Secondary Transition Resources

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file:///D|/TOC.html (2 of 2) [3/12/2010 3:01:43 PM] 2010 Save the Date! Empowerment Pennsylvania Community on Transition Conference in Action: A The primary purpose of this conference is to expand the capacity of schools and communities, Unified Approach in partnership with youth, young adults and families, to promote the successful transition of youth/young adults with disabilities to post-school outcomes of employment, postsecondary education and training, community participation and healthy lifestyles. Participants will have July 21 - 23, 2010 the opportunity to learn about effective practices to assist youth/young adults with disabilities in achieving successful post-school outcomes. Penn Stater Conference Center & Hotel The primary focal points of this year’s conference are: State College, Pennsylvania • Empowerment • Models of Success • Unified, Holistic Approach • Leadership • Partnerships

The conference will feature: Scholarship Information: • Keynote and feature presentations The conference registration fee is $125 for all participants. Family and • Approximately 80 breakout sessions youth who need support in order to attend the conference can apply • Sessions and activities designed for youth and young adults by for a scholarship to cover the registration fee and hotel (one room the PA Youth Leadership Network up to a maximum of three nights). Scholarships will be available • Family engaging sessions and networking opportunities after May 1, 2010. To request a scholarship application, please email • Accommodations and Supports Expo, featuring a hands-on [email protected]. assistive technology lab, vendor displays and resource tables • Internet Café featuring www.sharedwork.org Hotel Information: A block of rooms at various hotels have been held for individuals Who should participate? who will be attending the conference. You are responsible for calling Stakeholders supporting post-school outcomes of youth with disabilities, such as… the hotel directly and making your own reservation. Participants will be responsible for the cost of their hotel rooms and must be billed Youth & Young Adults Local Service Providers directly. A list of hotels will be available in the conference brochure Youth served in Foster Care Juvenile Justice Affiliates on the PaTTAN website after May 1, 2010. Education Administrators Independent Living Staff Foster and Adoptive Parents Social Security Staff For Additional Information: Advocates CareerLink Staff School Nurses Secondary Educators For additional information, please email [email protected] Psychologists Social Workers or visit the PaTTAN website at www.pattan.net in the upcoming Family & Caregivers Vocational Evaluatorsl months. Local Government Officials Regional Dept. of Public Welfare Staff Transportation Affiliates Social Security Benefits Counselors Save the Dates for Future PA Community on Practice Mental Retardation Staff Mental Health Services Workers Conferences: Family Health Representatives Assistive Technology Professionals OT, PT, Speech Medical Assistance Program Staff July 20-22, 2011 Regional Career Education Partnerships Drug & Alcohol Program Workers July 24-27, 2012 for Youth Affiliates & Staff Regional Career Educators Special Educators Workforce Investment Board Members Agency Administrators Career & Technology Educators Business/Employers Vocational Rehabilitation Staff Local Youth Councils Higher Education Professionals Guidance Counselors Public & Private Child Welfare Workers SECONDARY TRANSITION Frequently Asked Questions (FAQ)

Why is it important to do secondary transition planning? Transition planning is required by federal law (IDEA 2004) and Pennsylvania regulations (Chapter 14). Research shows that a large number of students receiving special education services do not pursue education or training beyond high school and, when compared to the general population, are not as successful as adults in the work place and in living independently in the community. Effective transition planning and programming helps to close these gaps.

For whom is transition planning required? Transition planning is required for all students with disabilities, at the time the student turns 14 (or sooner if appropriate), who qualify for special education services.

When does secondary transition planning start? Transition planning and services are required by Pennsylvania regulations (Chapter 14) to be addressed in the Individualized Education Program (IEP) of the student in the year in which the student turns 14 years of age. Transition planning may begin at an earlier age if the IEP team decides that early planning is appropriate. These planned services should support the student’s post-school goals for education and training, employment, and independent living.

Who is involved in the transition planning process? Transition planning involves the student, the family, all relevant educational staff (including a representative from Career and Technical Education if the student is planning to attend or is involved in a career and technical education program), personnel from outside agencies, and other applicable community members who engage as a team in developing a purposeful transition plan. How do we determine what a student needs for effective transition programming? Transition planning begins with good assessment. This assessment should be completed before developing the IEP. Assessment data serves as the common thread in the transition process and forms the basis for defining goals and services to be included in the IEP. Transition assessments can be formal or informal. Formal assessments typically involve using a standardized procedure for administering, scoring, and interpreting an assessment. For example: adaptive behavior/daily living skills assessments; general and specific aptitude tests; interest inventories; intelligence tests; achievement tests; employability tests; and self-determination assessments. Informal assessments could be interviews and questionnaires, direct observations, curriculum-based assessments, or environmental analyses. Transition related assessment and student progress information should be described in the Present Levels of Academic Achievement & Functional Performance (PLAAFP) section of the student's IEP.

How is a transition plan written? Once all of the assessment information about the transition needs of the student is completed, including academic and functional strengths and needs, along with information from the student, the student's family, relevant education personnel, agency staff and applicable community members, an IEP team meeting is held. At this meeting, the IEP team discusses the student’s postsecondary goals for education, employment and independent living. Based on the student’s postsecondary goals, the IEP team reviews the student’s present educational levels, develops the transition services and activities section (the transition grid), writes measurable annual IEP goals that address the identified needs, and completes the remaining sections of the IEP based on the student’s postsecondary goals. How important is the participation of outside agencies in the secondary transition process? Collaboration with outside agencies is crucial. Federal law (IDEA 2004) requires if a community agency is likely to be responsible for providing a program for transition services prior to and/or after graduation, the school must invite, with parental consent, the agency representative to the IEP meeting. This includes agencies such as the Office of Vocational Rehabilitation, the Office of Developmental Programs, the Office of Mental Health, and other community agencies providing services to adults.

In the IEP, what is a coordinated set of activities? A coordinated set of activities is a long-range plan for adult life. This plan should reflect all the activities, experiences and services that need to be done beginning at age 14, or younger when appropriate, to help the student prepare for the transition to the adult world. In preparing the coordinated set of activities, several important questions should be asked, including: What are the student's current levels of educational performance based on the student's long-range goals for adult life? What activities and strategies can be included in the IEP to help the student move toward the realization of his/her postsecondary goals? What community linkages, services, supports, or programs will the student need in order to achieve the desired post-school goals and ensure success as he/she enters the adult world? The school's responsibility is to ask these questions and to help identify services and activities, involve appropriate agencies, and coordinate the process so that the student's goals are met.

What services and activities will students need to assist them in acquiring a desired job or career? Services and activities can focus on developing work-related behaviors, seeking employment, exploring careers, pursuing skills training, taking apprenticeship training, and finding actual employment. In order to succeed in the workplace, students may need to focus on basic employee behaviors, such as staying on task, responding appropriately to instructions, working with a team, working under pressure and developing skills for self-advocacy. Workplace readiness skills may be gained through part-time (supported or nonsupported) employment, community service, apprenticeship programs, or involvement in the local Official of Vocational Rehabilitation (OVR) and/or Career Link Offices. Students may also explore postsecondary educational programs and settings.

What experiences and activities outside the school building will prepare a student for participation in community life? Many students can benefit from planned experiences and activities in their communities. These activities can include social, recreational and leisure activities, routine appointments, shopping, banking, transportation, or experiences in local government settings. Some specific examples include: • Securing a driver's license • Applying for a state identification card • Visiting or joining a community recreation center or YWCA • Investigating opportunities for socialization (bowling, ice skating) • Participating in community and civic organizations • Investigating participation in a local church, temple, or synagogue youth group • Learning the location of convenient and affordable places to shop for food, clothes, etc. • Identifying transportation options within the community

What is a functional vocational assessment? The IEP team may need information about a student’s aptitudes, interests, and skills in relation to employment. A functional vocational assessment is information gathered through situational assessments, preferably in the setting where a job is performed. It can include observations, surveys, interviews, and formal or informal measures. It focuses on practical skills needed for job and career success. Information can be collected about personal/social interactions, ability to manage money, mobility, personal hygiene, following directions, ability to complete a task, etc. The information that is collected can be used to refine the transition services and activities in the IEP.

4/09 SECONDARY TRANSITION Getting It Right in the IEP (IDEA 2004/Chapter 14 2008) 1. Welcome and Introductions A student aged 14 or younger, if determined appropriate by the Individualized Education Program (IEP) team, must be invited to participate in the IEP meeting. Participation may include welcoming and/or introducing those in attendance, or if appropriate, leading the discussion. It is strongly recommended that the student be adequately prepared for this new role prior to the IEP meeting. 2. Complete Pages One and Two of the IEP Take special note of age, anticipated date of graduation, signatures of student, family members, community agency representative(s), and career and technical education representative in addition to the other required members of the IEP team. Note: Identify those members who will be providing written input and who have been excused from attending the meeting. 3. Discuss and Identify the Student's Post-School Goals Go to section III of the IEP – Transition Services – and in the space after the colon in each post-school goal area (postsecondary education/training, employment, if appropriate, independent living) indicate the transition post- school goal that the student has identified. (For example: Henry has a goal of attending community college.) A student must have a least one post-school goal, but many students will have two or three. Information for this section should be based on school and agency assessments, student/family surveys, interviews, etc., conducted PRIOR to the IEP meeting. 4. Discuss the Student's Present Levels of Academic Achievement and Functional Performance Indicate the student’s academic achievement levels (math, reading, CTE program, content areas, etc.) in relation to where he or she wants to go and what he or she wants to do beyond school for the post-school goal(s) selected (see #3 above). Next, indicate the student’s functional performance levels (employability, mobility, activities of daily living, etc.) in relation to where he or she wants to go and what he or she wants to do beyond school for the post-school goal(s) selected. Include strengths relative to those goal(s). The Present Levels should include a summary of data collected from progress reports from the last IEP as well as from other sources, such as teacher reports, classroom assessments, district- wide assessments, community-based checklists, agency evaluations, etc. At the end of the Present Levels, take special care to accurately describe the student's academic, developmental, and functional needs, as these will form the basis of the services and activities listed in the Transition Grid, and addressed throughout the IEP.

5. Go to Section III of the IEP - Transition Services The grid covers the period of time the IEP is in effect. Although the grid represents the current year of planning, IEP teams should also document a multi-year planning process. This step-by-step plan leading the student from high school to their post-school goals is called the coordinated set of activities. One way to document the coordinated set of activities might be to keep the grids from year to year. Upon graduation, the IEP team would then have a coordinated set of activities in the student’s file.

Another way might be to add to the grid each year so that the record of the coordinated set of activities is documented yearly – resulting in the final IEP containing all activities completed during the student’s school career. This would also provide the LEA with information to complete the Summary of Academic Achievement and Functional Performance as the student exits his or her educational program upon receiving a diploma or aging out. 6. Section III - CIP Code For students attending a career and technology center, indicate the Classification of Instructional Program (CIP) code related to the approved vocational program in which the student is enrolled.

7. Section III - Courses of Study The student’s courses of study should identify the courses he or she will be taking within the duration of this IEP that lead to each post-school goal. Place all courses under each goal area that apply. 8. Section III - Activity/Service Column In the Service/Activity column under each post-school goal area, identify specific actions that will be taken within the duration of this IEP. There must be at least one activity and/or service for each identified post-school goal. Each student need listed in the Present Education Levels should be addressed in this column either as an activity or service. This list includes activities such as visiting postsecondary programs or learning about employment options. The list also includes instructional services that will be offered to address skill deficits, such as improving reading comprehension, improving task completion, or developing independent travel skills. The list also includes services that may be provided as Specially Designed Instruction. When considering each service/activity, determine if instruction is needed to address a skill deficit. If instruction is needed, write a measurable annual goal in Section V of the IEP.

9. Section III - Location, Frequency, Beginning Date, Duration In the LOCATION column, identify where each service or activity will take place. Examples might include: regular education class, learning support classroom, community site, guidance office, etc. In the FREQUENCY column, identify how often each service or activity will take place. Examples might include: during the school day, weekly, once in the fall semester, etc. In the PROJECTED BEGINNING DATE column, identify when each service or activity will begin. Examples might include: the implementation date of the IEP (MM/DD/YYYY), or if the activity will take place only during the spring semester, indicate that date (MM/DD/YYYY). In the ANTICIPATED DURATION column, indicate when each service or activity will end. Examples might include: the anticipated duration date of the IEP (MM/DD/YYYY), or if the activity will conclude before the IEP duration date then indicate that date (MM/DD/YYYY).

10. Section III - Person(s)/Agency Responsible In the AGENCY RESPONSIBLE column, indicate the person’s title or agency that will ensure each activity/service is completed. Examples might include: OVR, MH/MR, LEA, guidance counselor, supports coordinator, special education teacher, etc. Adult service agencies that provide services to support youth and young adults with disabilities to be successful in their targeted post-school goal(s) should be invited to the IEP meeting.

11. Section III - Measurable Annual Goal - Yes or No In the Measurable Annual Goal block, indicate YES or NO whether there will be a measurable annual goal written for each applicable post-school goal. (See #8 above.) There must be at least one Measurable Annual Goal for each post-school goal. NO should be ONLY checked when the IEP team has determined that a particular post-school goal area is not applicable. 12. Complete the Remaining Sections of the IEP For all students for whom transition activities are being planned, the entire IEP should be considered as a comprehensive plan to assist the student in achieving their desired post-school outcomes. The following sections may include transition-specific information: • Program Modifications and Specially-Designed Instruction • Related Services • Supports for School Personnel • Extended School Year

4/09 Pennsylvania Department of Health Transition Health Care Checklist

A resource to help Youth with special health care needs make a successful transition to adult living that includes their health and health care.

REVISED: JUNE 2008 Pennsylvania Department of Health Transition Health Care Checklist

The Pennsylvania Department of Health southwest regional staff and their community partners recognized a gap in health services for youth with special health care needs. When these youth leave school, they transition from having different or no insurance coverage, from seeing pediatric specialists to searching for adult medical specialists, and from good coverage for medications to having to understand new systems for obtaining medicines. Working with the State Transition Team, agencies, and families, the Transition Health Care Checklist was created to guide youth, families, and professionals during this time of change. This publication is available on-line. Please visit the Department of Health website: www.health.state.pa.us/transitionchecklist

Permission is hereby granted to download, use, copy and widely distribute this publication for educational purposes or personal use only. No material may be modified, edited or taken out of context such that its use creates a false or misleading statement or impression. Table of Contents

Steps for Success in Using this Document ...... Page 1 Transition Planning in the Educational System ...... Page 3 Introduction to Checklist ...... Page 4 Checklist - Health Care: Skills Needed for Independence ...... Page 5 Checklist - Health Care: Explore Benefits and Services ...... Page 9 Flowchart of Health Insurance options ...... Page 10 Tips to Maintain Health Insurance ...... Page 11

Appendix A Communication ...... Page 12 Appendix B Transition Time Line ...... Page 13 Appendix C Financial & Legal Concerns ...... Page 14 Appendix D Healthy & Ready to Work National Center ...... Page 16 Appendix E HIPAA/COBRA ...... Page 18 Appendix F SSI/SSDI/Ticket to Work/Medicare ...... Page 19 Appendix G Medicaid/MAWD/CHIP/adultBasic ...... Page 22 Appendix H Medicaid-Funded Waivers ...... Page 25 Appendix I Special Health Conditions Programs & Clinics ...... Page 28 Appendix J Office of Developmental Programs (ODP) ...... Page 29 Appendix K Mental Health (MH) ...... Page 30 Appendix L Children, Youth & Families (CYF) ...... Page 31 Appendix M Office of Vocational Rehabilitation (OVR) ...... Page 32 Appendix N Assistive Technology (AT) ...... Page 33 Appendix O Medical Home ...... Page 35

Acknowledgements ...... Page 36 Steps for Success in Using this Document

1. Identify the health care needs of the individual in transition: • What are the current health care or medical needs • What are the expected future health care or medical needs

2. Identify an individual(s) who can assist you and/or your family in: • Transition health care planning • Completing the Transition Health Care Checklist

3. Learn about specific health care or medical needs

Transition Health Care Checklist page 5-8 Health Care: Skills Needed for Independence

It is suggested that this information is shared with all involved in developing the transition plan Appendix A - Communication

4. Determine whether all current providers have “age restrictions” for providing care

Transition Health Care Checklist page 9 Health Care: Explore Benefits and Services

5. Determine if current health care insurance plan has “age restrictions” for providing coverage

Transition Health Care Checklist page 9 Health Care: Explore Benefits and Services This process starts prior to age 18 Appendix D - Healthy & Ready to Work National Center Appendix E - HIPAA/COBRA

1 Transition Health Care Checklist Steps for Success in Using this Document continued 6. Learn about the Transition Time Line, Financial and Legal Concerns, and transition out of school

Appendix B – Transition Time Line Appendix C – Financial and Legal Concerns

www.sharedwork.org • transition out of school

7. Explore benefits and services that are provided to eligible adults • See Appendices F - N

8. The Transition Health Care Checklist has many contact numbers and websites

Locate the banners in the appendix sections for contact information

9. How to use the checklist with transition plans: • Have current assessment information from youth, family, doctors, therapists • Know current functioning level at home, school, and in real life situations • Set goals and make a plan • Are you receiving the help you need? Contact Parent Education Network (PEN) or Parent Education Advocacy Leadership Center (PEAL) • Individuals to include when transition planning: Regular Education Teacher, School Nurse, Doctor, Therapists Mental Health/Mental Retardation; Office of Vocational Rehabilitation; Social Security Administration; County Assistance Office; Children, Youth and Families; Case Managers; local advocate • Who else needs to be part of your team

Doctor/Therapist Sample Plan Teach Information Youth Skill to be Family Needs Learned Experiences Teacher

2 Transition Health Care Checklist Transition Planning in the Educational System

What Happens Next? Transition planning involves a partnership between the youth, their family, school-age services and program providers, post-school services and program providers, and local community members that results in higher education, employment, and independent living. Transition should be viewed as a bridge between school programs and the opportunities of adult life. The Secondary Transition Process entails recognizing the youth’s current strengths, interests, preferences, and needs and imagining what services and supports he or she will need to achieve future success. This Transition Health Care Checklist (pages 5-10), should be used as part of the transition planning process to ensure that a youth’s health care needs are recognized and incorporated into the plan.

Where Do I Begin? What Type of Services Are Secondary Transition is the process of preparing Available? youth for life after high school. Transition planning The Pennsylvania Department of Education in Pennsylvania is legally required in the IEP by age (PDE) through the Bureau of Special Education 14; however, thoughtful transition planning can (BSE) and local school districts offer a variety of begin at any age. In a youth’s high school program supports to students, parents, and family members there are three main postsecondary goals that must in ensuring a successful transition to postsecondary be addressed: post-secondary education or training, life. These supports include special education employment, and community living. These three teachers, transition coordinators, rehabilitation areas are often referred to as “post-school counselors, guidance counselors, and school health outcomes” and are the driving force behind the programs. Regionally throughout Pennsylvania Individual Education Program (IEP) written for there are 29 Intermediate Units (IU) each with at students in high school. Transition planning least one designated transition coordinator. continues through high school as instruction and Information regarding Pennsylvania’s Intermediate community experiences support these Units can be found on the PDE website at postsecondary goals. By beginning to discuss www.pde.state.pa.us. The Pennsylvania Training transition as early as possible, the IEP team can and Technical Assistance Network (PaTTAN) works work with each youth and their family to plan for collaboratively with local school districts and the future. This includes selecting classes, activities, Intermediate Units to provide professional and services that will be meaningful and motivating development, technical assistance and information to the youth and lead to his/her postsecondary goal. regarding transition projects, products, and Throughout the planning process it is important to activities that promote successful outcomes for remember that once a student graduates from high transitioning youth. More detailed information on school or reaches age 21, s/he is no longer entitled supports and services provided by PaTTAN can be to services through the educational system. A youth found at www.pattan.net. must apply and meet eligibility requirements for services provided by adult agencies. 3 Transition Health Care Checklist “How does the individual’s health impact the transition activity?”

Introduction: Read the Steps for Success

Review your transition postsecondary goals

Work through the Transition Health Care Checklist to determine what the individual can do now, what needs to be learned, and what supports may be needed

Make a comprehensive transition plan

Continue to use this checklist at key transition times to adjust the plan according to the changing needs of the individual in transition

Name of Youth

Date of birth

Date of review

Who is completing this review? Check all that apply. Please Sign

Youth

Family Member or Guardian

Health Care Professional

Educator

Agency

Other

Other 4 Transition Health Care Checklist I. Health Care: Skills Needed for Independence A. Communication Knows communication methods Verbal—how often are they understood by others Signs/Reads Lips—knows how to arrange for interpreters Devices—knows how to care for, gets routine maintenance, and uses independently Written If non-verbal, has a support person available who is familiar with the individual’s methods of communication Knows when, why, and how to sign name Knows how to communicate by phone/TTY/TTD

B. Vision/Hearing Corrective lenses Knows who provides service and how/when to get a new prescription Uses eye glasses or contact lenses independently Hearing devices Knows who provides service and how/when to get equipment repaired Uses hearing devices independently Asks for accommodations for Vision/Hearing as needed

C. Self Awareness Knows who is involved with decision making and who to trust Knows name, address, telephone number, and who else may have this information Knows height, weight, and birth date Carries personal I.D. when leaving home Knows where their social security card and birth certificate are and when to use them Knows present medical condition and past medical history Has received training in and understands human sexuality Understands who can help Knows health emergency telephone numbers Knows how to dial emergency numbers

5 Transition Health Care Checklist I. Health Care: Skills Needed for Independence continued D. Activities of Daily Living (ADL) and Safety Understands Hot and Cold Knows how to use and read different types of thermometers Can treat minor cuts, scrapes, burns Knows how to use household chemicals properly and does not mix them Knows how to protect themselves by wearing gloves and safety glasses Can read labels or knows who to ask Understands the proper use of matches Has emergency, fire, and disaster plans made Responds appropriately to fire alarms/knows fire exits—knows meeting place Has a fire extinguisher and smoke detector and knows how to use and maintain correctly

E. Transportation Knows who can provide transportation and how to make arrangements Knows about equipment needed Knows about funding or saving money to purchase a vehicle, needed adaptations, or services Knows how to apply for PENNDOT’s accessible parking placard Understands safety aspects of walking

F. Nutrition Understands and can deal safely with food allergies Understands specialized diets, foods, and medical follow up Understands healthy food choices Understands funding and budgeting for the purchase of food

G. Fitness Understands the benefits of a health and fitness program Participates in physical activity with modifications as needed Knows and understands the dangers of drugs, alcohol, and abusive behaviors Knows where and how to get help to maintain a healthy lifestyle

6 Transition Health Care Checklist I. Health Care: Skills Needed for Independence continued H. Self Advocacy Knows how to stop and think and when to say “NO” Knows how to make contact with community advocacy organizations Is aware of Self Determination Can call and ask for information, materials, and booklets with needed modifications

Has good communication with doctors and other professionals (Appendix A)

I. Job Search Considerations Is able to discuss with employer conditions that require individualized accommodations Has considered the pros and cons of full time and part time work and benefits offered

Knows how to work with the Office of Vocational Rehabilitation (OVR) (Appendix M) Knows if the work place has people trained for medical emergencies until 911 arrives Has an Emergency Information Form (EIF) completed and given to all who will need this according to the directions on the form www.aap.org/advocacy/eif.doc

J. Post-Secondary Considerations Is able to discuss conditions that require individualized accommodations Has toured schools and visited the Office for Students with Disabilities Has considered the pros and cons of full time and part time enrollment and the effect on benefits offered Knows how to work with the Office of Vocational Rehabilitation (OVR) Has worked with health services to plan for medical emergencies Has an Emergency Information Form (EIF) completed and given to all who will need this according to the directions on the form www.aap.org/advocacy/eif.doc Has met with the staff at the Office for Disability Services Knows rights and responsibilities under the ADA and the 504 Rehabilitation Act

K. Managing Medical Information/Record Keeping Knows how to write down and follow recommendations of the doctor or dentist Knows who can help fill out medical and dental forms Has a way of keeping medical and dental records Immunizations/medical tests and results/summaries/functional assessment

7 Transition Health Care Checklist I. Health Care: Skills Needed for Independence continued L. Managing Appointments Keeps a calendar of doctor and dentist appointments Keeps a notebook of names, phone numbers, and office hours Knows when to call and communicate when sick or hurt Knows the difference between an emergency (go to hospital) and illness (call your doctor) Knows about making appointments for specialists, family planning, genetic counseling, hospital and laboratory tests Calls for referrals if needed

M. Pharmacy Develops a working relationship with pharmacist Knows where to go and which prescription cards to show Understands “co-pay” Knows to ask the doctor or pharmacist for help

N. Medication Knows medication: name, purpose, side effects, restrictions, how to get filled Knows when and who to call for prescription refills Recognizes medication and when to take it Knows how your medications are to be taken (oral, sub-lingual, rectal, vaginal, topical, eye or ear drops/ointments, inhalants, injections) Opens “child resistant” caps or can ask for bottles that can be opened Fills daily/weekly pillbox Knows how to purchase and properly use over-the-counter medication Knows who to call with questions or to get help

O. Equipment and Treatments Understands and uses remedial/prosthetic devises and equipment as prescribed Understands and can do their own treatments and therapies Knows who does their treatments and therapies and how often they occur Demonstrates responsibility for compliance Can arrange for equipment maintenance—both routine and emergency

The hope is that skills can be taught and learned. If a particular skill can not be achieved for independence, a plan is then developed 8 Transition Health Care Checklist II. Health Care: Explore Benefits & Services A. Locating Adult Health Care Providers, Finding a Medical Home (Current Doctors, Clinic Staff, and other Practitioners can assist you) Understands health insurance to select a doctor Considers living arrangements to be accessible to doctors and medical facilities Evaluates accessibility of the office and exam rooms Prepares questions for doctors, dentists, nurses, and therapists Can respond to questions from doctors, dentists, nurses, and therapists Plans a meeting with providers of health care Knows the difference between primary care, specialists and what each provides

B. Understands that Each Insurance Plan has Approved Providers Understands managed care plans vs. traditional insurance Identifies providers who will accept insurance Identifies services covered by the insurance plans Knows when and how to ask for assistance from Special Needs Unit or Case Managers in the plan chosen

C. Knows How Each Benefit is Identified Understands how to use insurance and when, out of pocket expenses, and carries insurance cards Understands who assists with coordination of services and how to contact them

D. Considers all Options and Limitations Flow Chart of Health Insurance Options ...... Page 10 Transition Time Line ...... Appendix B Financial and Legal Concerns ...... Appendix C Healthy & Ready to Work National Center ...... Appendix D HIPAA/COBRA ...... Appendix E SSI/SSDI/Ticket to Work/Medicare ...... Appendix F Medicaid/MAWD/CHIP/adultBasic ...... Appendix G Medicaid-Funded Waivers ...... Appendix H Special Health Conditions Programs & Clinics ...... Appendix I Office of Developmental Programs (ODP) ...... Appendix J Mental Health ...... Appendix K Children, Youth and Families ...... Appendix L Office of Vocational Rehabilitation ...... Appendix M Assistive Technology ...... Appendix N Medical Home ...... Appendix O

9 Transition Health Care Checklist Flow Chart of Health Insurance Options

If you are 18 years Then: old and have: Apply for MA programs including MA for No Medical Assistance (MA) Workers with Disabilities (MAWD) No Medical Assistance for Apply for CHIP/adultBasic Children with Disabilities Obtain private health insurance No Private Insurance College - apply for student plan

Apply for SSI (Adult Criteria) MA with SSI MA Continues* MA for Children with Disabilities Apply for MA programs including MA for Workers with Disabilities (MAWD)

Children’s Health Insurance Program (CHIP) Apply for adultBasic (waiting list or purchase) This will end the month of Explore Private Health Insurance Options your 19th birthday

Student status or disability group insurance Check HIPAA Portability Private Insurance Group Plan through Employer Opt for COBRA Apply for adultBasic

Ask about Health Insurance Premium Payment (HIPP) - A Medical Assistance Program that will pay your premium for insurance plan at work if you qualify

*You may be dropped from Medical Assistance if you do not meet SSI adult disability criteria

10 Transition Health Care Checklist Tips to Maintain Health Insurance

• Private Insurance - Youth may be able to continue on their family’s insurance plan as long as they are considered an “ adult disabled dependent child.” (page 17 of the Transition Health Care Checklist) Ask Human Resources or Benefits Department for information/application. This information should include the process and form for the doctor to complete Include all medical conditions This may be available as the youth leaves high school • HIPAA - The Health Insurance Portability and Accountability Act - stands also for portability (page 18 of the Transition Health Care Checklist) When changing Group Health Insurance get a Certificate of Coverage for portability. This will waive the waiting time and any increased costs for pre-existing conditions. A formula may be applied • Social Security as an adult is one pathway to public insurance (Medical Assistance) (page 19 of the Transition Health Care Checklist) • Youth receiving SSDI benefits as a child will need to reapply as an adult with disabilities (page 20 of the Transition Health Care Checklist) • Youth may want to apply for MAWD-Medical Assistance for Workers with Disabilities (page 23 of the Transition Health Care Checklist) • It is critical to have current evaluations and assessments including educational, medical and psychological. These are needed to apply and qualify for many services and programs • Remember to return to the doctor for prescriptions and referrals for testing and services paid by public and private insurance • Depending on whether private or public insurance is used as primary, explore the type and level of services available. Check if covered services meet the needs of the youth • Be sure to show all service providers all insurance cards

11 Transition Health Care Checklist Appendix A: Communication Consumer and Provider Checklist for Working Together

Am I an equal partner? Have I mentally reversed roles? Have I accepted my share of the responsibility? Do I respect the other? Do I listen, respond, and listen again? Am I open to new ideas and concerns? Do I create a comfortable environment? Do I bring “what I say” and “what I feel” closer? Am I clear about needs? Do I clarify fact and opinion? Do I respect and discuss confidentiality? Do we see each other in more than one dimension: looking beyond the condition or disability? Do we value each other’s experience? Do we care about each other’s emotional needs? Do we encourage communication with others to increase knowledge and to decrease isolation? Do we make every effort toward solutions and finding resources? Do we plan together? Do we all understand the directions? Do we follow-through with the shared plan?

Condensed from a CASSP discussion paper from a program, “Parent/Professional Collaboration: The Current Reality and Challenges for the Future”. (2002)

Notes:

12 Transition Health Care Checklist Appendix B: Transition Time Line

Before Age 14 Age 14 Age 18 Age 21

If determined Transition services A youth has the right This is the last year appropriate by the must be included as to make all his/her the youth is entitled IEP team, transition part of the IEP own decisions about to special education services may be health care OR services through PA included in the IEP evaluate and Department of consider other Education (PDE) decision-making options that need to be investigated

Begin to consider Youth has the right A youth may choose interests and to be part of the IEP not to continue in preferences that can transition team school. Parent may be connected with override this the education & decision until age 21 medical plans

Review attached Start thinking and Transition to adult Transition to adult appendices to talking about health care providers health care providers determine eligibility transition from could be completed should be complete for services and pediatric to adult unless special when to apply health care providers provisions are made

Begin to update Apply for SSI and As of the 21st evaluations and reapply for MA birthday, if the assessments programs youth still qualifies including medical for MA, then limited and psychological at Contact private adult MA services age 16 insurance about will begin. continued coverage

Males need to register for selective service

A youth can register to vote

Continue the development of social skills and interests in community and recreational activities throughout these years

13 Transition Health Care Checklist Appendix C: Financial and Legal Concerns A. Is able to provide a signature. At age 18, a youth has the right to make health care decisions B. Considers the following in their Financial and Estate Planning • Income or funding SSI/SSDI/employment/waiver • Estate planning • Special Needs Trusts

C. Has been informed of confidentiality laws such as HIPAA regulations

D. Has determined decision-making capabilities • Is able to make own decisions • Has options in place for decision making assistance where needed Signed HIPAA release to hear and see medical information Power of Attorney to help with legal and health insurance matters Representative Payee to help with social security income and expenses Client Advocate to help get services Co-Signer to help with banking and obtaining credit Guardianship (full, limited, emergency) for individuals over the age of 18 who have been declared “incapacitated” (this term is used in PA) • Definition: The legal test to determine whether or not a person is incapacitated in Pennsylvania is an adult whose “ability to receive and evaluate information effectively and communicate decisions in any way is impaired to such a significant extent that he is partially or totally unable to manage his financial resources or meet essential requirements for his physical health and safety” • Petition filed by attorney; decision made by judge • Individual needing guardianship must be included in proceedings unless they would be harmed by being present • Guardianship proceedings should be initiated only if there are no other solutions to address an identified problem

E. Considers the advantages and disadvantages of what it means to be Emancipated • Definition varies with different agencies—have you asked your agency • Generally Emancipated Minor means: Person is under 21, employable, and no longer under the care and control of parents or legal guardians Not claimed as a dependent on another individual’s federal income tax form The minor is married, divorced or widowed Acceptable Written Proof of Verification of Emancipation • Marriage License/Income Tax Form/Court Order

F. Other Considerations • Is able to fill out Income Tax forms or knows who can assist • Knows about unemployment and how to apply or knows who can assist

14 Transition Health Care Checklist Appendix C: Financial and Legal Concerns continued Special Needs Trusts

Does your child, youth, adult, sibling with special needs have assets over $2,000 in their own name? (1)

NO YES

Will your child inherit anything of value Is it a substantial NO from you or someone else? (1) amount?

See a Special Needs YES/MAYBE Planning Specialist NO • Google: Special Needs Planning YES/MAYBE • Call your local special Does your needs organization child earn YES • Google: MetDESK® more than the SSI limit? (1)

What needs to be done: • Prepare/review your (& spouse's) Will, Power of Attorney, and Medical Directive • Consider a Special Needs Trust • Prepare a Letter of Intent (also called a "Life Care Plan") - this details directions for daily routines and needs • Review your (& spouse's) long-term care plan • Review/update all beneficiary designations • Notify family and other interested parties

(1) You, or your child, must meet income, resource, and other eligibility requirements in order to be eligible for Medicaid, SSI, and related programs.

For more information in Pennsylvania, contact your local County Assistance Office or online at www.compass.state.pa.us.

15 Transition Health Care Checklist Appendix D: Healthy & Ready to Work National Center

Public & Private Insurance Plans: Understanding the Options for Youth with Special Health Care Needs (YSHCN)

For more information about the Healthy & Ready to Work National Center, please see the following website: http://www.hrtw.org/healthcare/hlth_ins.html

The following is for PA residents. Here is what we know: • N0 Health Insurance - Two out of five college graduates and one-half of high school graduates who do not go on to college will experience a time without health insurance in the first year after graduation (Commonwealth Fund 2003) • Dropped from Health Insurance - Youth are often dropped from their parent’s policies or public insurance programs at age 19, or when they graduate from college and struggle to find jobs with health benefits. Youth are far more likely to be uninsured than older adults: 4 of 10 youth between the ages of 19 and 29 can expect to be uninsured at sometime during the year--twice the rate of adults ages 30 to 64 (Commonwealth Fund 2003) • Barriers to Getting and Keeping Health Insurance - “Americans with disabilities face a number of distinct barriers in obtaining, maintaining, and using health insurance and in accessing and using health care services. At the same time, Americans with disabilities also confront the barriers, problems, and frustrations with which most Americans routinely struggle in the insurance and health care systems" (National Council on Disability 2002 Annual National Disability Policy: A Progress Report)

Public Health Insurance: Changes after Reaching Majority Age

Maintain Medicaid • Passed SSI Redetermination - continue benefits • Emancipated Minor - by marriage or court decision may qualify or continue Medicaid due to income or disability status Dropped from Medicaid • Former childhood SSI recipient at age 18 did not qualify under SSI redetermination and loses benefits (income too high or does not meet disability criteria) Not Approved - Section 301: Provision to Continue Receiving SSI Benefits Individuals found ineligible during SSI redetermination may continue to receive SSI benefits IF they began receiving state vocational rehabilitation agency services before their 18th birthday. Section 301 allows the youth to retain benefits (SSI & Medicaid) while he/she participates in approved vocational rehabilitation program www.socialsecurity.gov New to Medicaid Child did not qualify for SSI under 18 due to family income At age 18, may qualify for SSI and Medicaid as an adult single head of household

16 Transition Health Care Checklist Appendix D: Healthy & Ready to Work National Insurance continued

Public Health Insurance: Continued Medicaid Eligibility

While Working: Section 1619(b) • Still meets SSI criteria, • Needs Medicaid in order to work; and • Gross earned income is insufficient to pay for other supports Medical Assistance for Workers with Disabilities (MAWD) • Worker could opt to buy-in and receive Medicaid benefits adultBasic for Uninsured • Meets income eligibility • See Appendix G

Private Health Insurance: Continued Benefits via Family Plan

Adult Disabled Dependent Child - Depending on Company and Policy • May continue on family plan if dependent for life • Be on family plan prior to turning 18 • Annual re-certification - disability & dependent Student Status - Depending on Company and Policy • Proof of college class load each semester (often requires full-time status) • Ages 18 - 22, sometimes older • Annual re-certification

Private Health Insurance: Youth Pays Premium

Options to buy Private Insurance Health Care Benefits: • College - student plan • Employed - group plan • Self-pay - single plan • COBRA

Concern: What happens if health status changes and affects continuous employment or attending school? There is no safety-net or ease on/off for health benefits

Tip Sheet Developed by: Patti Hackett & Glen Gallivan, Ocala, FL

The opinions expressed herein do not necessarily reflect the policy or position nor imply official endorsement of the funding agency or working partnerships.

17 Transition Health Care Checklist Appendix E: HIPAA/COBRA

Health Insurance Portability and Accountability Act (HIPAA) US DEPARTMENT OF LABOR www.dol.gov/dol/topic/health-plans/portability.htm Consumer Hot Line 1(877)881-6388 or www.insurance.state.pa.us

HIPAA - The Health Insurance Portability and Accountability Act • Provides rights and protections for participants and beneficiaries in group health plans, including protection for coverage that limit exclusions for pre-existing conditions • Allows for opportunities to enroll in or purchase group or special health plans

HIPAA has Implications for Youth with Disabilities • States are required to provide people losing group coverage access to individual insurance regardless of their health status as long as they meet certain criteria. This can help adult children who qualify through their parent’s group coverage but may lose eligibility when they reach the age limit • Youth with disabilities can apply for individual coverage as a “HIPAA eligible individual” through the Blues Eligible individuals include those who have had insurance for at least 18 months where the most recent coverage was under a group health plan or COBRA (Consolidated Omnibus Budget Reconciliation Act of 1986) coverage Applications must be made within 63 days of losing the group coverage It is critical that the person who has paid the premiums for the insurance request a certificate of coverage for portability from the Benefits office of their company. This proves the person with a disability had insurance • The youth then needs to present this document to their new employer. This will eliminate or reduce the waiting period for pre-existing conditions

COBRA - Consolidated Omnibus Budget Reconciliation Act of 1986 • Allows individuals and their dependent children the right to temporarily continue health coverage at group rates when the employee is laid off, resigns, and sometimes when fired • Continued coverage will cost more than the normal group rate (COBRA plans include the employer’s share and the employee’s share of the health plan), but it is less expensive than many individual health plans and provides time to find other health insurance • The law generally covers group health plans for employers who have 20 or more employees (to include part-time employees) except for plans sponsored by the federal government

18 Transition Health Care Checklist Appendix F: Social Security Administration (SSA)

To Apply for Social Security Benefits: Get more information or apply Call toll-free online at 1(800)772-1213 www.socialsecurity.gov

A. General Information • Considers filing for benefits • Knows how to contact their Social Security office located in their county • Is aware of the appropriate use of SSI or Social Security payments • Complies with reporting requirements to prevent penalties/loss of benefits Change in income, resources, or living arrangements Change of address, drop out of school, get or change a job, get married If going on to post-secondary schooling • Considers contacting an advocacy agency for assistance in getting a job OVR, County MH/MR, ARC, Ticket to Work, Employment Network • Recipients may be scheduled for review/determination of continued eligibility • Is aware that appeals can be filed and follows them through • Knows and follows time lines

B. Supplemental Security Income (SSI) • Under age 18 years Eligibility is based on income and resources of the parents and of the child Eligibility is also based on applicant’s approved disability • 3 months before the 18th birthday Contact the Social Security office for adult eligibility determination and to prevent loss of benefits Eligibility will be based only on applicant’s income and resources at age 18 • Over age 18 years Consider filing for SSI and cooperate with the Medicaid re-evaluation Eligibility is based on the income and resources of the applicant Eligibility is based upon applicant’s disability determination • Consider taking advantage of Ticket to Work

C. Social Security Benefits as a Disabled Adult Child (SSDAC) • Definition: An adult child who is disabled may be eligible based on the parent’s work history if the parent retires, becomes disabled and collects benefits, or if the parent is deceased • Benefits may begin at age 18 • Medicare will take effect 24 months after this benefit begins (not before age 20) • Payment of benefits can be sent directly to a child, under the age of 18, if the child: Is on active duty in the armed forces/Is living alone/Is self-supporting Is a parent and filed for their own or their child’s benefits Is within 7 months of attaining age 18 Demonstrates the ability to handle finances and no qualified payee is available 19 Transition Health Care Checklist Appendix F: Social Security Administration (SSA) continued D. Social Security Disability Benefits (SSDI) • Definition: Benefits may be payable if the child has enough Social Security work credits to be “insured” for disability and meets the medical criteria. The amount of work required depends on the age of the child. The minimum work credits needed is six • Medicare will take effect after 24 months of SSDI checks • Payment amount is based on the actual earnings of the child

Ticket to Work • The Ticket To Work And Self-Sufficiency Program (The Ticket Program) is a new part of Social Security. It is for people who receive SSDI benefits and/or SSI benefits because of a disability. The program offers greater choices in getting the services needed to go to work and earn more money. The goal is to earn enough money so Social Security cash benefits are not needed • Under the Ticket Program, employment, vocational, and other services can be received to assist going to work and earning more money. These services are provided by Employment Networks which are private organizations or government agencies that have agreed to work with Social Security in providing employment services to beneficiaries with disabilities (See Benefits Planning Assistance and Outreach) • www.yourtickettowork.com • Must be over 18 and under 65 and have a determined disability • Must have had a re-determination from child to adult disability standard

Work Incentive Planning and Assistance (WIPA) • Provides work incentive planning and assistance to beneficiaries with disabilities • Can meet with the families to think through options of working and SSA benefits/Can assist with Individual Education Program (IEP) • This service is available after the person is getting SSA benefits • For individual assessment contact your local work incentive counselor

This service is available statewide by calling the following numbers: Southwestern PA . . .(866)802-4333 Northwestern PA . . .(866)627-8610 Southeastern PA . . .(877)375-7139 Northeastern PA . . .(866)541-7005 Central PA ...... (866)541-7005

Section 301 – Provision to Continue Receiving SSA Benefits • Can continue to receive SSA cash benefits and also medical benefits if participating in an approved vocational rehabilitation program prior to age 18, or has an active IEP • This section of the Social Security law can be used when a youth, at age 18 years, no longer meets the SSA medical qualifications • www.hrtw.org/healthcare/sect_301.html

20 Transition Health Care Checklist Appendix F: Social Security Administration (SSA) continued Medicare 1-800-MEDICARE (1-800-633-4227) • Our national health insurance program for people age 65 and older and those individuals who have been on SSDI or SSDAC benefits for 2 years. Coverage may also be available for those who have End Stage Renal Disease and those with Lou Gehrig’s Disease (ALS) • Understands who is eligible and how to contact SSA • Carries a Medicare card with them and contacts SSA if it is lost • Is aware of Medicare premiums and coinsurance • Knows how to look for a physician/supplier • Is familiar with Medicare prescription drug act/Medicare savings programs • Knows Medicare rights and appeals process • Is aware of the Medicare web site www.medicare.gov • Understands they may be eligible for both Medicare and Medical Assistance (Medicaid) • Medicare Prescription Drug Program Enrolls in a Medicare Prescription Drug Plan www.medicare.gov Applies for Extra Help with Social Security Administration (those who are on Medical Assistance do not need to apply for Extra Help) www.socialsecurity.gov Considers all needs and is aware of Medigap insurance and Medicare Advantage Plans and knows where to go for help in deciding whether to purchase one and how to choose www.medicare.gov/Choices/Overview.asp

Additional Information from www.youthlaw.org The article, “Establishing Disability For Young Adults” was written for www.youthlaw.org November 3, 2003. The article alerts families to look more deeply into this benefit. This helps them to strategize, therefore limiting interruption or loss of benefits at a time when it is most crucial

• A youth must show a disability using the adult SSI standard which states that, for adults age 18 or older, SSA defines “disability” as the inability to engage in any substantial, gainful activity by reason of medically determinable physical or mental impairment, which can be expected to last for at least 12 months or result in death • If a youth is working, there is the possibility that SSA may determine that the youth is gainfully employed and therefore is no longer disabled. It is important to have as much documentation as possible to support the claim that the youth is still disabled even though able to work • The childhood disability regulations provide a guide to assessing the functional limitations of a youth. Find common ground between this childhood standard and the adult disability standard that the youth must meet. Use this information to communicate to SSA the true impact of the functional limitations

21 Transition Health Care Checklist Appendix G: Medicaid/MAWD/CHIP/adultBasic

Apply for Medicaid/MAWD/CHIP/adultBasic on the same application: Call toll-free 1(800)986-KIDS • Call toll-free 1(800)GO BASIC Contact toll-free number of contractor by referencing: www.insurance.state.pa.us keyword: CHIP or adultBasic Apply online at www.compass.state.pa.us Contact your County Assistance Office under Government in the Blue Pages or www.dpw.state.pa.us keyword: CAO Medical Assistance/Medicaid Call for assistance 1(800)692-7462 • TTY/TTD 1(800)451-5886

Medical Assistance/Medicaid In this document the word Medicaid is interchangeable with the term Medical Assistance Medicaid is a Federal/State program designed to provide comprehensive and quality medical care for low-income families with special emphasis on children, pregnant women, the elderly, the disabled, and parents with dependent children. In Pennsylvania, this process is known as Medical Assistance (MA) because it includes Medicaid as well as benefits that are not part of Medicaid At age 18: • Apply for SSI benefits. This can be done either on your own or with the help of the County Assistance Office (CAO) • After applying, a Disability Advocate Program (DAP) worker, located in your CAO, will contact you to assist you with your application for SSI • Provide disability documentation to both your CAO and SSA offices • If SSI denied, complete SSI appeals process working with DAP worker

County Assistance Office (CAO) • Report all changes to your caseworker. Contact the CAO if unsure of your caseworker’s name • Follow through with the county recertification process once a year • Indicate on all applications or reapplications that there is a child with a disability in the household. Remind your caseworker when applying or reapplying that you have a child with a special need • Know how and when to use the ACCESS/Managed Care card Do not destroy your ACCESS/Managed Care card. If a replacement is needed, contact your caseworker If a notice has been received that your Medicaid claim will be closed, appeal within 30 days of the notice date. If you were receiving benefits as a family when Medicaid was closed, be sure to alert the CAO that you have a child with special needs. If additional help is needed, contact Legal Services in your county 22 Transition Health Care Checklist Appendix G: Medicaid/MAWD/CHIP/adultBasic continued Managed Care Special Needs Unit • If unfamiliar with Managed Care, ask your caseworker or Case Manager in the Special Needs Unit. To contact a Special Needs Unit in your area: AmeriHealth Mercy Health Plan ...... 1(888)991-7200 ...... TTY 1(888)987-5704 Gateway Health Plan ...... 1(800)642-3550 ...... TTY 1(800)654-5988 Unison Health Plan/MedPLUS+ ...... 1(877)844-8844 ...... TTY 1(800)473-0989 AmeriChoice of Pennsylvania, Inc...... 1(800)321-4462 ...... TTY 1(800)654-5984 Health Partners of Philadelphia, Inc...... 1(866)500-4571 ...... TTY 1(877)454-8477 UPMC for You ...... 1(800)286-4242 ...... TTY 1(800)361-2629 Keystone Mercy Health Plan ...... 1(800)521-6860 ...... TTY 1(800)684-5505 Access Plus ...... 1(800)657-7925 ...... www.accessplus.org

Medical Assistance for Workers with Disabilities - MAWD • Full Medicaid coverage is available for those: • Age 16 years to 64 years • Who are considered disabled by meeting social security criteria and are employed or self employed • Who meet income and resource criteria Is more generous than traditional Medicaid There are deductions that may apply • Participants pay a monthly premium based on their income • For more information visit www.dpw.state.pa.us

Children’s Health Insurance Plan - CHIP CHIP General Information and Tips • Free and Low-Cost coverage for uninsured children up to age 19 • Must be a PA resident • Child must be a US citizen or be in lawful status • Eligibility determination considers age of child and household income • Determination considers child for either CHIP or Medicaid • Pre-existing conditions and assets are not a consideration • Enrollment is for 12 consecutive months; renewals occur yearly • Benefits are a comprehensive package; no deductibles • No co-pays with Free CHIP. There are co-pays with Low-cost and Full-cost programs. • Identification cards are from insurance carrier and are not unique to CHIP • Notices are sent to advise of changes • An Eligibility Review Process (ERP) exists to allow for a review of an eligibility decision • A single application can be used to apply for CHIP or Medicaid

23 Transition Health Care Checklist Appendix G: Medicaid/MAWD/CHIP/adultBasic continued adultBasic Insurance Plan adultBasic General Information and Tips • Low-cost coverage for uninsured adults, age 19 through age 64 • Must be a resident of PA for 90 days, a US citizen, or be in lawful status • Must have had no health insurance coverage in last 90 days, except for a person or their spouse who lost health insurance coverage because they are no longer employed • Pre-existing conditions and assets are not a consideration • Eligibility determination considers household income, age, and number of persons in the household • Determination considers adult for either adultBasic or Medicaid • If enrolled, a low monthly premium payment is required as well as co-pays; no grace period if premium payment not made • If eligible and there is a waiting list for enrollment; option to purchase coverage exists. For cost, please see www.insurance.state.pa.us keyword: adultBasic • If eligible and placed on a waiting list for enrollment, there is an option to purchase coverage at full-cost at any time. If eligible, purchasing or canceling full-cost adultBasic coverage while on the waiting list will not affect position on the waiting list. For coverage of adultBasic, please contact the adultBasic insurance contractor in your county • Renewals occur yearly • Benefits are basic; do not include prescriptions, vision, dental, or mental health services • Notices are sent to advise of changes • An Eligibility Review Process (ERP) exists to allow for a review of an eligibility decision • A single application can be used to apply for CHIP, Medicaid, or adultBasic

General Insurance Options Other Insurance to Consider • Life and Car Insurance, Liability Insurance, Property and Casualty Insurance • Private Health Insurance Options Examples are Special Care from the Blues, Advantage from Aetna

24 Transition Health Care Checklist Appendix H: Medicaid-Funded Waivers

To apply for waivers: Office of Social Programs 1(800)757-5042 Welfare Helpline 1(800)692-7462 or www.dpw.state.pa.us Online Application - www.compass.state.pa.us

Where do I Begin • Most services have functional and financial requirements. The eligibility requirements for each waiver are listed below • To apply for services you will need to complete a Medicaid application that can be obtained at any of the following: Local County Assistance Office Area Agencies on Aging Centers for Independent Living Hospitals County Human Service Agencies • You will need to bring the following: Proof of Income Proof of Assets Information on any transfer of assets during the past 3 years • You should receive a written notice within 30 days after you apply

What Happens Next • Some waivers may have a waiting list, particularly the waivers for people with Mental Retardation • If services are available, you may have a choice of service providers • If you want to use a service provider who is not enrolled in that program, ask how they can be enrolled

What Types of Services are Available • The type and amount will depend on the program(s) in which you are enrolled

25 Transition Health Care Checklist Appendix H: Medicaid-Funded Waivers continued

Support Services Waivers Go to: www.dpw.state.pa.us/ServicesPrograms/MedicalAssistance/SuppServWaivers/ (select waiver) As you apply for waivers, consider there may be waiting time

AIDS Waiver The AIDS Waiver provides home and community based services to eligible persons age 21 or older who have symptomatic HIV Disease or AIDS

Attendant Care/Act 150 • PA residents ages 18 through 59 who are mentally alert, have physical disabilities, are capable of managing their own legal and financial affairs and capable of selecting, supervising and terminating an attendant • Attendant Care Medicaid Waiver Program has income and resource requirements • Attendant Care Act 150 Program has NO income and resource requirements, but includes sliding scale co-pays

COMMCARE Waiver • PA residents age 21 and older who experience a medically determinable diagnosis of Traumatic Brain Injury (TBI), have substantial functional limitations, and require a Special Rehabilitative Facility (SRF) level of care • TBI is defined as a sudden insult to the brain or its coverings, not of a degenerative, congenital or post-operative nature, which is expected to last indefinitely

Consolidated Waiver for Individuals with Mental Retardation The Consolidated Waiver for Individuals with Mental Retardation provides services to eligible persons with mental retardation so that they can remain in the community

Elwyn Waiver The Pennsylvania Elwyn Waiver Program provides home and community-based services to eligible persons age 40 and older who are deaf, blind, or deaf and blind, and who reside in Delaware County

Independence Waiver Pennsylvania residents age 18 and older with a severe physical disability requiring a nursing facility level of care. The disability must result in substantial functional limitations in three or more of the following major life activities: mobility, communication, self-care, self-direction, capacity for independent living, and learning

26 Transition Health Care Checklist Appendix H: Medicaid-Funded Waivers continued

Support Services Waivers continued Go to: www.dpw.state.pa.us/ServicesPrograms/MedicalAssistance?SuppServWaivers/ (select waiver) As you apply for waivers, consider there may be waiting time

LIFE (Living Independence for the Elderly) LIFE is a managed care program for frail, over 55 years, elderly recipients who have been determined to need "nursing facility level of care" but wish to remain in their home and community as long as possible

Michael Dallas Waiver The Michael Dallas Waiver provides home and community based services to eligible persons of any age who are technology-dependent. Technology dependence is defined as requiring technology to sustain life or replace vital bodily function and avert immediate threat to life

OBRA Home and Community-Based Waiver Provides services to people with developmental physical disabilities to allow them to live in the community and remain as independent as possible • Pennsylvania residents age 18 and older with substantial functional limitations in three or more of the following major life activities: mobility, communication, self-care, self-direction, capacity for independent living, and learning • Other related conditions (ORCs) include physical, sensory, or neurological disabilities which manifested before age 22 • A limited number of individuals with an Autism Spectrum Disorder diagnosis can be served under the OBRA Waiver

Pennsylvania Department of Aging (PDA) Waiver The PDA Waiver provides nursing facility eligible Pennsylvanians age 60 or older, services to live independently in their homes and communities

Person/Family Directed Support Waiver The Person/Family Directed Support Waiver provides services to eligible persons with mental retardation so that they can remain in the community

27 Transition Health Care Checklist Appendix I: Special Health Conditions Programs & Clinics Purpose: The Pennsylvania Department of Health will reimburse medical care providers for medical services provided to eligible Pennsylvania residents who do not have the financial resources or health insurance coverage to enable them to access these services

Conditions: Medical Payment Services are available to children and adults with the following conditions: Services for Individuals Under 22 Years of Age Children and Youth: • Cardiac • Galactosemia • Maple Syrup Urine • Child Rehabilitation • Hearing and Speech Disease (MSUD) • Phenylketonuria (PKU) • Cleft Palate Impairment • Orthopedic • Ventilator Dependency Any Age: • Cooley’s Anemia • Hemophilia • Spina Bifida • Cystic Fibrosis • Sickle Cell Disease • Chronic Renal Disease

Over 21 Years of Age: • Traumatic Brain Injury Services Reimbursed services are limited by condition, but may include inpatient, outpatient, specialized therapies, laboratory, radiology, medications, medical equipment, supplies, and care coordination

Eligibility Criteria for eligibility are: U.S. citizenship, Pennsylvania residency, medical confirmation of a diagnosis of one of the medical problem listed above, lack of monetary resources or health insurance (including Medical Assistance and Children’s Health Insurance Program). Depending on income some families share in the cost of treatment based on a sliding scale. If the eligible individual has health coverage, it must be used first to pay for care since the Department is the “payer of last resort”

To Enroll Contact the Bureau of Family Health’s Eligibility Unit listed below to request an enrollment application. Eligibility is based on review of a client’s health care coverage, income, age and medical confirmation of condition. Once enrolled, a client must reapply annually for eligibility verification

Pennsylvania Department of Health • Bureau of Family Health Health and Welfare Building - 7th Floor East Wing 7th & Forster Streets • Harrisburg, PA 17120 1(800)986-4550 TTY: 1(877)986-5432 www.health.state.pa.us

28 Transition Health Care Checklist Appendix J: Services through the Office of Developmental Programs (ODP)

For assistance call ODP’s Customer Service Number: 1(888)565-9435 Web address: www.dpw.state.pa.us/ServicesPrograms/MentalRetardation

Where do I Begin • Call to register with the County Office of Mental Health and Retardation (MH/MR). Number for your county MH/MR office is in the phone book • The county offices serve individuals of all ages • Take documents such as medical, psychological, and school records. The County Office of Mental Retardation will then determine if you are eligible for services. Onset of MR must occur and be diagnosed prior to age 22 • If eligible, you may choose a Supports Coordinator • If eligible, consider applying for Medical Assistance Programs • Ask for the brochure about waivers and talk with a Supports Coordinator about eligibility

What Happens Next • Depending on services available and your needs, the Supports Coordinator may: Attend your IEP meeting to help you with planning for your future Talk with you about your needs and goals Help you develop your individual plan Offer you an opportunity to complete an application for the Consolidated or Person/Family Directed Support Waivers Help you arrange to work with individuals or agencies in the community Offer you the opportunity to complete a Prioritization of Urgency of Need for Services (PUNS) form and place you on the waiting list Help to identify other types of community supports and services that would help you while you are waiting • Youth or families should report changes in needs to Supports Coordinators

What Types of Services are Available • Home and Community Services • Employment Services • Respite Services • Transportation Services • Other Community Services: Adult Day Services Home Finding Services Contact your county MH/MR office for specific information about these services 29 Transition Health Care Checklist Appendix K: Mental Health (MH)

Phone Book Blue Pages under County - Look for local county MH/MR office Web address: www.dpw.state.pa.us/About/OMHSAS Regional Office: Central (717) 705-8396 Northeast (570) 963-4335 Southeast (610) 313-5844 Western (412) 565-5226 Where do I Begin • Call the local County Office of Mental Health and Mental Retardation (MH/MR) The county MH/MR offices serve as a referral source. Most mental health services are delivered by contracted local provider agencies If experiencing mental health crisis, contact your county Crisis Intervention or go to your nearest emergency room • The county MH/MR office determines a person's eligibility and discusses funding options, assesses the need for treatment or other services, and makes referrals to appropriate programs to fit the needs. If determined eligible, a case/care manager will be assigned, and frequency and type of contact between consumer and case/care manager will depend on need • A case/care manager in your insurance plan may assist you to locate services • The cost of these services will vary and may be covered by: Private insurance, Medical Assistance Programs through behavioral health managed care or fee-for-service, Children’s Health Insurance Program (CHIP) pays for some of these services. For eligible individuals – see page 10 of this checklist People who use services but are not on Medical Assistance and are without access to other insurance, will be assessed for their ability to pay for services by the county MH/MR office Physicians (primary doctor or psychiatrist) or psychologist may need to complete an evaluation or assessment to document medical necessity for a specific level of care or treatment What Happens Next • Depending on services available and your needs, the case/care manager may: Help you get needed insurances or benefits (ex. Social Security, Medical Assistance) Talk with you about your needs and goals At age 18, help you develop a plan to transition from the children’s service system to the adult service system (children’s services are more intensive than adult services) Help you arrange for and work with individuals or agencies in the community Attend and participate in the IEP with the permission and invitation of consumer and parent • Youth or families should report changes in needs to case/care manager What Types of Services are Available • Short-term Inpatient Treatment • Emergency Services • Residential Arrangements • Partial Hospitalization • Specialized Rehabilitation Training • Housing • Outpatient Care • Vocational Rehabilitation Eligibility for Behavioral Health Rehabilitation Services continues until the youth reaches his or her 21st birthday. An adolescent may continue in treatment in a JCAHO (Joint Commission on Accreditation of Health Care Organizations) accredited Mental Health Residential Treatment Facility program until the age of 22, as long as they are in treatment at the program prior to their 21st birthday If a consumer is lost to their County System, they may re-enter by calling their county MH/MR office, their behavioral health managed care plan case/care manager, or primary care physician 30 Transition Health Care Checklist Appendix L: Children, Youth and Families (CYF)

If you have any questions please contact the appropriate CYF Regional Office: • Central (717) 772-7702 • Northeast (570) 963-4376 • Southeast (215) 560-2825 • Western (412) 565-2339

Children Receiving Services while Living in their own Home • Children who are living in their own home and receiving services from the County Children and Youth Agency (CCYA) or Juvenile Probation Office (JPO) will carry their health insurance coverage and receive health care services in the same manner as they did prior to receiving CCYA or JPO services Children Receiving Services while Living in Out-of-Home Placement • Children or youth living in out-of-home placement are in the legal custody of the county children and youth agency or under the jurisdiction of the juvenile court • Out-of-home placement settings include: shelter homes; foster homes; group homes; supervised independent living; residential treatment facilities; child residential facilities; juvenile detention centers; and youth development centers • When it is determined that a child needs out-of-home placement services, a family service plan and child permanency plan is completed. The ultimate goal is for the youth to have adults in their lives who have made a commitment to care for and support them to the age of maturity and beyond • While a child or youth is in out-of-home placement, a caseworker or probation officer should work with other appropriate agencies to assist the child or family in planning for transition out of the CCYA/JPO system prior to the youth’s discharge At the Youth’s 18th Birthday • The youth may return to their own home • The youth, the youth’s attorney, or the attorney who is appointed as the Guardian Ad Litem may petition the court to continue out-of-home placement services in order to complete a course of treatment or educational instruction up to age 21 • The youth who is adjudicated dependent and/or delinquent may participate in an Independent Living (IL) Program anytime from age 16 up to 21, including after discharge from placement services. IL services available to youth include: Life Skills Stipend Education and Housing Employment Support Services Training Prevention Services While in Out-of-Home Placement, many Youth are Covered under the Pennsylvania Medical Assistance (MA) Program • The youth needs to ask their Health Insurance Plan or MA Plan for a “portability statement” of the insurance coverage they have, including the length of time they have been covered under the plan • Youth remaining in the custody of the CCYA will remain covered under MA while in out-of-home placement • Prior to the 18th birthday, the youth can follow the suggestions on page 10 and ask for assistance, as needed, to apply for appropriate programs • If a youth is no longer in out-of-home placement at age 18, the youth must apply or re-apply for the MA program

31 Transition Health Care Checklist Appendix M: Office of Vocational Rehabilitation (OVR)

1-800-442-6351 • TTY 866-830-7327 Labor & Industry Website: www.dli.state.pa.us Click: disability services

Where do I Begin • Any youth with a disability interested in working, who may meet the eligibility criteria should be referred to the local OVR district office Referral can be made up to 2 years prior to graduation and can be made by anyone • Initial Interview – Take with you the following: A medical history related to the youth’s disability (names and addresses of doctors and specialists, hospital admissions, names of medications) Expect to discuss how the youth’s disability may affect their ability to work Education History/Individual Education Program (IEP) and Job History Vocational tests and reports that are available What are the Eligibility Criteria • Unlike the entitlement services provided by special education, OVR is an eligibility program, which means a referred youth must meet the following criteria to qualify for services: Have a disability that is a physical, mental, or emotional impairment which results in a substantial impediment to employment Benefit in terms of an employment outcome from services provided Vocational rehabilitation services are required to prepare for, enter, engage in, or retain gainful employment • Eligibility for services is determined within 60 days by a qualified VR counselor What Happens Next • If eligible, services will be provided based on severity of disability (federal law) • An Individualized Plan for Employment (IPE) will be jointly developed by the individual and OVR counselor. The goals of the IPE and IEP should support the youth’s employment outcome • A financial needs test will determine what costs will be covered by OVR and what the youth or family may be required to contribute • Diagnostic services, vocational evaluations, vocational counseling and guidance, and job placement services are always provided by OVR

What Types of Services may be Included in the IPE • Diagnostic & Vocational Evaluations; Counseling, Guidance & Placement Services; Training Services & Supports; Physical Restoration Services; Assistive Technology Services Employment and Completion of the Program • OVR services will end when the youth achieves the IPE goals and is successfully employed for at least 90 days. The case will then be closed • If necessary, OVR post-employment services are available after the case is closed Additional Programs Offered by OVR • Bureau of Blindness and Visual Services (specialized children services, orientation and mobility, rehabilitation teaching) • Office for the Deaf and Hard of Hearing (information and referral, advocacy, interpreter database) • Hiram G. Andrews Center (comprehensive vocational training program) 32 Transition Health Care Checklist Appendix N: Assistive Technology (AT)

Visit Pennsylvania’s Initiative on Assistive Technology (PIAT) www.disabilities.temple.edu Click: Programs: Assistive Technology: Companion Guide to the Transition Health Care Checklist 1-800-204-7428 or TTY 1-866-268-0579

What is Assistive Technology (AT) • Assistive Technology (AT) means any item, piece of equipment or product system, whether acquired commercially, modified or customized, that is used to increase, maintain or improve functional capabilities of individuals with disabilities AT includes DEVICES such as wheelchairs, hearing aids, and reachers AT also includes the SERVICES you need to find and use the devices, including evaluation, customization, maintenance and repair, and training for you and the people who support you • Assistive Technology devices can help you with activities related to work, school, and community living. Examples of AT devices include: For work or school: Devices or software that enlarge and/or read print For work or school: Keyboards with large keys and hands-free mouse For community living: Changes to your home or vehicle so you can get around For community living (recreation): Special gloves and handles that allow you to participate in hunting, fishing, gardening, and other activities

What are the Resources for Learning about and Getting Assistive Technology • Assistive technology may have been provided to you from your school As you prepare for transition, you will need to know who owns the AT devices and whether or not you can take it with you As you plan for transition, think about other AT devices you don’t have now. Some insurances may pay for AT while you are still in school • In school, your Individualized Education Program (IEP) team can help you identify the devices you will need and help you use them Your school district may have staff who is knowledgeable about AT Your Intermediate Unit has at least one Assistive Technology Consultant who can help If you need AT for employment, contact your OVR counselor and consider including AT in your Individualized Plan for Employment (IPE) • At any age, Pennsylvania’s Initiative on Assistive Technology (PIAT) can help you learn about, borrow, and try AT devices that might be helpful to you in education (including post-secondary education), employment, and/or community participation and independent living

33 Transition Health Care Checklist Appendix N: Assistive Technology (AT) continued What Programs are Available through PIAT • PIAT’s programs are free and available throughout Pennsylvania • Information and Referral: Call 1-800-204-7428 or TTY 1-866-268-0579 or contact [email protected]. PIAT can also work with you to identify vendors and service providers, locate used equipment, and learn about funding • Device Demonstrations and Loans: Call 1-800-204-7428 or TTY 1-866-268-0579 or contact [email protected] or [email protected]. Our staff can assist you in making a decision about the AT that is right for you, through device demonstrations and equipment loans

• Free adapted telecommunication equipment: The Telecommunication Device Distribution Program (TDDP) is a source for FREE equipment for qualified Pennsylvanians with Disabilities that necessitate the use of special equipment in order to use the telephone. Equipment includes amplified phones, large button phones, hands free headsets, TTYs, talking keyboards, and other specialized equipment. For more information on eligibility or to request an application, contact PIAT at 1-800-204-7428 voice, TTY 1-866-268- 0579, or email [email protected]

34 Transition Health Care Checklist Appendix O: Medical Home

PEDIATRIC MEDICAL HOME PA ACADEMY OF FAMILY PHYSICIANS EPIC Integrated Care Program (PAFP) www.paaap.org PAFP Foundation Medical Home Project Renee M. Turchi, MD, MPH, Molly Gatto, www.pafp.com/Foundation/MedicalHome Principal Investigator Associate Program Director [email protected] [email protected] Dana Boyd, Medical Home Coordinator [email protected] PA Chapter, American Academy of Pediatrics EPIC Integrated Care PAFP Foundation Rose Tree II, 1400 N. Providence Road 2704 Commerce Drive Media, PA 19063 Harrisburg, PA 17110 800-414-7391 • 484-446-3005 • Fax 484-446-3255 800-648-5623 • 717-564-5365 • Fax 717-564-4235

What is a Medical Home A medical home is not a building, house or hospital, but rather an approach to providing health services in a high-quality and cost-effective manner. A medical home is defined as health care that includes: • Provision of preventative care • Assurance of ambulatory and inpatient care for acute illness 24 hours daily • Provision of care over an extended period of time • Identification of the need for subspecialty consultation and referrals • Interaction with school and community agencies • Maintenance of a central record and database with all pertinent medical information • Coordination of care

What does it Mean for Youth With health care services for adolescents who have special needs, the focus is on the following: • Offering a comprehensive approach to providing adolescent health care services • Increasing access to health care services for adolescents, including the documentation of health needs • Promoting health and mental well being as part of a successful transition from youth to adulthood • Reducing health disparities among adolescents • Finding connections to other medical and non-medical community resources • Providing an environment of trust and mutual responsibility • Identifying and facilitating transition in the myriad of areas where change is required

What can Families and Youth D0 • Contact the PAAAP or the PAFP to see if there is a medical home practice near you • Talk with your doctors to see if they are connected to the PAAAP or PAFP and are they interested in participating in the Medical Home Projects • You or your doctors may contact the above programs

35 Transition Health Care Checklist Acknowledgements

This document, the core committee and the This effort has been facilitated by a core state wide efforts have been encouraged and committee: supported by The Pennsylvania Department of Patti Agosti, Parent Health as part of the PA MOU (Memorandum Of Understanding) State Transition Leadership Susanne Durler, Parent Team. This team provides the spring broad for Carol J. Gettemy, RN, BSN cross agency, community, and family Special Health Care Needs Consultant collaboration. PA DOH Sharon Gretz The Concern: that youth are leaving Systems of Care Coordinator school to discover they have no health Special Kids Network insurance or doctor and difficulty Larry Klinger obtaining medications and treatments. Assistant Director of Special Projects The Population: youth with complex Allegheny Intermediate Unit (AIU) medical conditions who are working with Joy Smith multiple government and private agencies. Work Incentives Coordinator AHEDD The Goal: to provide a checklist, resources, and steps to assist youth and families to make Michael Stoehr a successful transition to adult living that Education Consultant, PATTAN includes health and health care. Pittsburgh office The Disparity: people with disabilities are Member of PA MOU truly a minority population with disparities in State Transition Leadership Team obtaining health care due to issues of access, for the PA Department of Education provider availability, income, discrimination, and communication The Collaborative Group: • Listened to families who struggle with The History: this effort began in questions about access to adult medicine, September 2003, in SW Pennsylvania and has changes in health care insurance, time lines grown to involve statewide and national for change, and employers who do not interest understand unique health concerns • Reviewed checklists, literature, Healthy People 2010 Objectives, the March 2002 New Freedom Initiative • Built on this knowledge • Then began with the question: Does the individual's health impact on the transition activity?

36 Transition Health Care Checklist Acknowledgements continued

Valuable Key players who supported, encouraged and for whom this document could not have emerged:

Ellen Romett, Retired as Director of PaTTAN Pittsburgh Joan Kester, current position-HRD Specialist, Mid-Atlantic Rehabilitation Continuing Education Program the George Washington University Abbie Barwick, Pennylvania Department of Health, Bureau of Family Health, Program Administrator for the Special Kids Network Systems of Care

Valuable contributors to the writing of this document have been the following:

Assisted: Robert D. Corcoran-Senior Financial Planner; Lori Froehlich-Office Manager, The Special Kids Network Southwest PA; Amy Goldman-Associate Director Institute on Disabilities Temple University; Patti Hackett-HRTW; Linda Loar-PEN (Parent Education Network); Aaron Moody-Financial Planner; Terri Reighard-Early Childhood Operation Coordinator, Systems of Care Initiative, Allegheny County; Staff of Specialty Clinics-Children’s Hospital of Pittsburgh Children, Youth and Families: Darlene Black, Lora Casteline, Gail Holloway Medical Home: Dana Boyd and Stephanie DeMuro, Medical Home Coordinators, Pennsylvania Academy of Family Physicians Foundation; Molly Gatto, Associate Program Director, at the Pennsylvania Academy of Pediatrics; Dr. Ken Keppel, Children’s Community Care (Medical Home Practice), Kittanning, PA Mental Health: Doris Arena, Julie Barley Office of Developmental Programs: Melissa Mecke, Dana Olsen, Ryan Walters Parents: Nancy Janicak, Terri Medvetz, Joanne Taylor, Barbara Telthorster, Gay Vroble PA Department of Health: Artis Hall, District Executive Director; Anita Lukacs, District Nurse Administrator; Jessica Bower, Barbara Caboot, Karen Espenshade, Janice Maker, Cindy Thomas, Jane Wolfe PA Department of Public Welfare: George L. Hoover (Currently with the PA Insurance Department); Carol M. Case, Holly Duncan, Joseph M. Foner, Trudy Johnson, Jane E. Marsteller, Joan Morgan, Carol Tooker, Carol Quick PA Health Law Project: Grace Egan, David Gates Pa Insurance Department: Kathleen Burk, Jeannette Hoffman, Kristen Wolfe Social Security Administration: Steve Andreas-Greensburg; Gary Johnston-Johnstown; Dan Majewski-Pittsburgh; Patricia Schuster; Louise Sprowls-Somerset; Sherra Zavitsanos-Central PA

37 Transition Health Care Checklist Acknowledgements continued

A special thank you to all who have typed, emailed, traveled, added to, presented, distributed, and shared in the vision

PA Department of Education, Maggie Beall Bureau of Special Education Certified School Nurse Practitioner PaTTAN (PA Training and Technical Moniteau School District Assistance Network) PASNAP www.pattan.net NASN Director PSEA, President DPS • NASN, Liaison to the NEA PA Youth Leadership Network • [email protected] PA Department of Health • Bureau of Family Health Youth Presenters Angela Collins George Agosti Mary King-Maxey Josie Badger • Jennifer Durler Paul Fogle PA Department of Health Joshua Whitney Division of School Health Beth Ann Bahn • Rosemary Moyer Children’s Hospital • of Pittsburgh PA Department of Health • Special Health Care Needs Consultants Penn State Children’s Hospital • Hershey Special Kids Network • Systems of Care Coordinators, supported Children’s Hospital by the PA Department of Health of Philadelphia

A thank you to all the agency representatives on the local, regional, and state levels who promote and support this vision.

38 Transition Health Care Checklist Notes

39 Transition Health Care Checklist

HD0532P (Rev. 6/08)

The Least Restrictive Environment

PEN Parent Education Network

2107 Industrial Highway

York, PA 17402

800.522.5827 V/TTY 800.441.5028 (Spanish)

www.parentednet.org

Prepared by Lyn Caruso Spaar

What IDEA Says About LRE “Respecting the Rights of Parents to Make The Least Restrictive Environment supplementary aids and services cannot Educational Decisions for (LRE) requirements of the Individuals be achieved satisfactorily.‖ Their Children” with Disabilities Act, 2004 (IDEA) state What does this mean for my child? that , ― to the maximum extent appropriate, children with disabilities, The least restrictive environment means The LRE presumption is that including children in public or private that placement discussions for your child IEP teams BEGIN institutions or other care facilities are begin with consideration of the regular education classroom. placement discussions for educated with children who are your child with the non -disabled…‖ A student with disabilities should have consideration of the

the opportunity to be educated with REGULAR education The Act also states that, ― special non-disabled peers. He or she should classroom. classes, separate schooling or other have access to the general education removal of children with disabilities curriculum, extracurricular activities and Discussions should focus from the regular educational any program that is available to non- on the supplementary environment occurs only if the aids and services disabled students. Curriculum nature or severity of the disability is modifications, with the assistance of needed to help your child such that education in regular supplementary aids and services, benefit from educational classes with the use of provide the student access to the services.

general education curriculum.

Supplementary Aids and Services

Comprehensive planning by the IEP disability can have an equal 1. Available to all students Team is the key to determining the opportunity to participate in the who need them least restrictive environment (LRE). general education program. Parents, 2. Designed to provide The IEP team must assess whether as part of the IEP team, can help educational benefit students with disabilities can decide which supplementary aids and 3. Provided in a manner participate and progress in the services are necessary for their child’s that avoids stigmatizing general education curriculum. educational success. students

Specialized instructional strategies Supplementary Aids and Services (Gaskin Settlement Agreement, 2005) and accommodations must be part Should Be: of the IEP, so that a student with a

Designing Educational Programs That Support Student Needs

The IEP team’s responsibility is to develop a One framework for considering the full range of plan that will support the success of your supplementary aids and services (Etscheidt & child’s educational program. To accomplish Bartlett, 1999) includes four categories that can this goal, the Team should focus on the help you evaluate your child’s general education student’s: environment:  Individual needs—strengths and 1. Physical- consider the classroom, tables, weaknesses and student’s position in the room  Curriculum demands 2. Instructional- visual aids, reading guides,  Instructional settings –can be multiple oral tests, electronic aids, and shorter tests settings 3. Social/Behavioral- social skill instruction,

counseling, behavior management plan, The team’s efforts should produce an peer or group support ―individual‖ program, and not a plan that 4. Collaborative- study skill training, attempts to FIT the student into current paraprofessional aide assistance, or programs. The use of aids and services will be instructional specialist support an important part of accomplishing this task.

How Can Parents Support LRE Placement?

Parents can assist in their child’s placement in the least restrictive environment through an active role on the IEP Team. As an IEP team participant, parents help develop, review and revise their child’s IEP. Parents can provide information about their child’s abilities, interests, performance, and education history.

Preparation for the IEP meeting is always very important. Gathering the following information with the IEP team can help necessary supplementary service, and how often establish the correct LRE placement for the service will occur your child:  Determine where the service will be provided  Determine your child’s areas of  Develop opportunities within the IEP for your child difficulty to interact with non-disabled peers (Non-  Determine your child’s areas of academic and extracurricular activities might educational success include meals, recess, transportation,  Discuss with the team recreational activities, athletics, field trips and supplementary aids, services, clubs.) and modifications that are  Determine and be specific about how much necessary for your child time with non-disabled peers is necessary to  Establish who will provide the meet IEP goals  Educate yourself about the LRE process and work PEN would like to thank the with the IEP team to follow these steps Harrisburg and King of Prussia Offices of the Pennsylvania Training and Technical Prepared by PEN- December 2008 Assistance Network (PaTTAN) for their contributions to this document.

Pennsylvania Youth Leadership Network Secondary Health Care Transition Toolkit

Developed by youth for youth

1st Edition July 2009 PYLN

PYLN TOOLKIT PYLN

What’s in the toolkit?

Pa Youth Leadership Network: Who We Are…………………………………3 Friendship and Relationships…………………………………………………………………13  Family involvement  Peer pressure  How to socialize and meet new people  Relationship building  Sexual assault, predators

Individual Interests and Community………………………………………………….27  Hobbies and interests  Community involvement  Arts, music, drama  Community based services Balance……………………………………………………………………………………………………….39  Balance and dealing with stress  Time management  Living a balanced life  Rest  Spirituality  Accessible faith communities Diet and Exercise……………………………………………………………………………………55  Diet and healthy eating  Alcohol and medications  Sports and exercise

Health Practices……………………………………………………………………………………..69

 Talking to doctors –

 First aid and medical emergencies  Women’s sexual health  Maintaining medical equipment

 Working with personal care attendants TOOLKIT PYLN

PA Youth Leadership Network: Who We Are

Developed by youth for youth

1st Edition July 2009

PYLN

PYLN TOOLKIT PYLN

What is the Pennsylvania Youth Leadership Network (PYLN)?

The mission of the PYLN is: ―To develop the self-determination, empowerment, and leadership of youth, that promotes successful post school outcomes in the areas of education, employment, independent living, and health and wellness among youth and young adults throughout Pennsylvania.‖ Furthermore, the purpose of ―this group is to foster an open dialogue with youth and young adults to create, enhance, or change important issues that affect their everyday lives including: transition from high school to adult life; policies and practices that affect individuals with disabilities; and promote the inclusion of youth and young adults with disabilities into all aspects of society at the national, state and local level.‖

Since 2005 the goals of the PYLN have been:

1) Collectively work and collaborate with a variety of groups to ensure a successful transition of youth with disabilities. 2) Establish and maintain a mentoring coalition between youth with disabilities and young adults who have accomplished successful transitions. 3) Develop, distribute and implement self-determination/ empowerment resources for use in educational programs. 4) Develop a youth friendly disability resource guide/template that highlights basic definitions, general information regarding transition services, and resources at the state and local levels. 5) Ensure equitable policies, practices, and attitudes that affect individuals with disabilities.

activities for youth at the following events: three Pennsylvania Statewide

Transition Conferences, the Youth Outcome Expo, Temple University Institute on Disability C2P2 program, and the PA Statewide Independent Living Council’s conference. We have also collaborated with other states to expand youth development and youth leadership efforts across the country. TOOLKIT PYLN

Meet the PYLN members who contributed to the Toolkit

Josie Badger

Age- 25

Disability- Muscular Dystrophy

Location- Wampum, PA/Pittsburgh, PA Activities- Josie completed graduate school for Rehabilitation Counseling at the University of Pittsburgh in May 2009. In May of 2007 she graduated summa cum laude from Geneva College, in Pennsylvania, majoring in Disability Law and Advocacy. On the state level, Josie is a founding member and youth coordinator of the Pennsylvania Youth Leadership Network. She is working with the Center for Disease Control and Prevention on a book addressing youth with disabilities transitioning out of high school. Josie is a member of the Governor’s Council for People with Disabilities and the Pennsylvania Rehabilitation Council. She also works for the Pennsylvania State Implementation Grant to support youth in their healthcare transition.

Collan Baker

Age- 19

Disability- Aspergers Syndrome and Attention Deficit Disorder

Location- Bear Lake, PA

Activities- Collan currently attends the Hiram G. Andrews Center, in the Building Maintenance program. While in high school he was involved the high school chorus and in high school track for 5 years, lettering twice. He has been a junior counselor at the Gertrude Barber Institute and volunteered at Head Start. He received the Temple Grandin Award for his work and accomplishments. For the past three summers he has worked for Allegheny Coupling in Warren County.

PYLN TOOLKIT PYLN

Bond Collard

Age- 18

Disability- Asperger's Syndrome

Location- West Chester, PA

Activities- Bond Collard has been speaking publicly about his Asperger's Syndrome since 2005. He has presented at the National Autism Conference, the PA Community on Transition Conference, Center for School Mental Health Conference and others. Bond was featured in a 2007 Emmy-Award winning episode of Nick News entitled "Private Worlds - Kids With Autism". He volunteers at his local library and SPCA and works part-time at a CD manufacturing company. Bond is a member of the National Honors Society and will be entering his senior year of high school this fall. This is Bond's first year as a member of the PYLN governing board.

Lewis Hall Age- 19

Disability- Cerebral Palsy

Location- Honeybrook, PA

Activities- Lewis currently attends college at Penn State Berks. Lewis has been involved in wheelchair sports for several years. He plays wheelchair basketball and wheelchair rugby. He has competed in the Devon Horse Show for twelve years and has won numerous awards. He also holds a green belt in Ti-Kwon-Do. Lewis has been completing his degree in accounting at a local college for the past year.

Jeff Hladio

Age- 28

Disability- Cerebral Palsy

Location- McMurray, PA

Activities- Jeff is involved in many activities inside and outside of the disability community. His hobbies include computers and sports. He works as a sales representative for Treasured Auctions (an online store). He has been a member of the Pennsylvania Youth Leadership Network since it began two years ago. TOOLKIT PYLN

Rachel Kallem

Age – 24

Disability - Bipolar Disorder, ADHD

Location - Pittsburgh, PA

Activities - Rachel Kallem graduated from the University of Virginia in May 2007 where she majored in psychology and minored in anthropology. Rachel is currently pursuing her Master’s in Community Mental Health/Special Education Support at Duquesne University. Rachel is co-chair of the National Youth Leadership Network’s Public Outreach Committee and serves on the Governing Board of the Pennsylvania Youth Leadership Network. She currently works for Mental Health America – Allegheny County, doing disability advocacy work and outreach. Rachel also does work with the Allegheny County Coalition for Recovery (ACCR). In her spare time Rachel is a voracious reader and loves to spend time with her two cats, Celeste and Roxie, and guinea pig, Teadora Thunder Jackson!

Chaz Kellam

Age- 26

Disability- Osteogenesis Imperfecta

Location- Pittsburgh, PA

Activities- Chaz currently works with the Pittsburgh Pirates as the Manager of Diversity Initiatives within the Community and Public Affairs Department. After graduating from Edinboro University with a degree in Sports Administration, Chaz changed his focus and became dedicated to improving the quality of life for people with disabilities in the Pittsburgh region. Serving on several non-profit boards such as Consumer Health Coalition, UCP Pittsburgh, Achieva and others, Chaz is very active in the region trying to make a difference. In the summer of 2005,

Chaz also became involved in semi-professional football working with the

Pittsburgh Colts in a variety of front office capacities.

PYLN TOOLKIT PYLN

Joe Kleppick

Age- 23

Disability- Aspergers Syndrome, Attention Deficit Disorder

Location- Pittsburgh, PA

Activities- Joe serves on many different boards in the Greenfield Community and is also involved with many different political campaigns. He works at Wal-Mart currently. He has been an active member of the Pennsylvania Youth Leadership Network since 2006. He is a member of the PEAL Center Board and an advocate for youth with disabilities.

Kelly Lauth

Age- 24

Disability- Generalized Anxiety Disorder, Panic Disorder, Attention Deficit Disorder

Location- Pittsburgh, PA

Activities- Kelly graduated magna cum laude from Geneva College in May, 2007 with a degree in Communications and Theater, and a minor in music. She has won numerous awards for her dedication to the performing arts, such as winning the Junior Miss scholarship program for her county in 2003. She is a member of Alpha Psi Omega, an exclusive theater fraternity, and International Thespian Society. She is a member of the band The Manifolds, alongside her husband and brother-in-law, and has recently recorded a new album, on which she sings and plays guitar, piano, and drums.

PYLN TOOLKIT PYLN

Kate Matelan

Age- 21

Disability- Spinal Cord Injury—Quadriplegic

Location- Emmaus, PA

Activities-Kate Matelan is a senior at Bucknell University. She was recently named 2009 Ms. Wheelchair Pennsylvania, an award honoring the accomplishments of women with disabilities, and will represent the Commonwealth in the Ms. Wheelchair USA competition. Kate is a Business Management major with a minor in Legal Studies. She is the editor of BE, Bucknell's fashion magazine and this summer she is interning in the fashion industry in New York City. Kate is a strong advocate for individuals with disabilities with a platform that advocates for communication between students and faculty to identify barriers faced by college students with disabilities

Allison Mervis

Age- 24

Disability- Blindness

Location- Munhall, PA

Activities- Allison received a Presidential Merit scholarship and voice scholarship throughout her undergraduate education at Chatham University. In the summer of 2005, she volunteered in the access technology center at Blind and Vision Rehabilitation Services of Pittsburgh. She completed her master’s from the University of Pittsburgh in Rehabilitation Counseling. She is currently working for Blind and Visual Rehabilitation Services.

PYLN TOOLKIT PYLN

Rachel Reimert

Age- 19

Disability- Learning Disabilities

Location- Kempton, PA

Activities- Rachel is currently a college student, pursuing a degree in education. In addition to being involved with the PYLN, Rachael has been involved in chorus, Credo, and drama club at school. She was a back stage helper/manager of a school play. She has received the ―X‖ Award, Aspiring Student Award, and has been a peer tutor, and a High Honor Roll student.

William Schoy Age- 17

Disability- Hard of Hearing

Location- McKeesport, PA

Activities- Bill became a member of PYLN in 2008. He is a student at McKeesport Area High School where he participates in Track and Field and takes courses in preparation for college. In addition to his efforts with the PYLN, Bill participates on the DePaul School for Hearing and Speech Gala and Alumni Fund-Raising Committees. This summer he is also working for Project H.E.A.R.T., an HIV/AIDS Education and Research Training Collaborative based in McKeesport. With the onset of football season this fall, he will continue his work as a High School Sideline Shooter/Videographer for Channel 11 news.

Gillian Withey Age- 24

Disability- Epilepsy /Uncontrolled Seizure Disorder

Location- Pittsburgh, PA

Activities - Gillian is new to the PYLN Governing Board this year. In addition to being involved in the PYLN, she participates in a symphony in her community and plays the trumpet. She is still looking for

employment, but graduated from Edinboro University of Pennsylvania in 2008, majoring in social science with an emphasis in statistics and research. She minored in music as well, being part of the school bands. Hobbies of hers include cross- stitch sewing and making thread bracelets. It makes her feel good being part of

the PYLN and she plans to continue to be part of it. TOOLKIT PYLN

PYLN Adult Allies

Adult allies support the work of the PYLN and follow the leadership and vision of its members. Michael Stoehr Title- Educational Consultant Employer- The Pennsylvania Training and Technical Assistance Network (PaTTAN) Location- Pittsburgh, PA

Joan Kester Title- Senior Research Associate Employer- The George Washington University, Center for Rehabilitation Counseling Research & Education Location- Mount Joy, PA (Lancaster)

Linda Loar Title- Parent Advocate Employer- Parent Education Network Location- Pittsburgh, PA

Joan Badger Title- Family to Family Health Information Coordinator Employer- Parent Education Advocacy Leadership Center Location- Wampum, PA

Marty Kester Title- Disability Advocate Employer- Retired Bureau Director, PA Office of Vocational Rehabilitation Location- Mount Joy, PA (Lancaster)

Sally Jo Snyder Title- Community Organizer Employer- Consumer Health Coalition Location- Pittsburgh, PA

Sharon Gretz Title- Executive Director Employer- Childhood Apraxia of Speech Association of North America

Location- Pittsburgh, PA TOOLKIT PYLN

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FRIENDSHIPS AND RELATIONSHIPS

Developed by youth for youth

1st Edition July 2009

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Family Involvement

Family Involvement: Bond’s Story

Hello, my name is Bond. I have Asperger’s Syndrome, I

am 18-years-old and will enter my senior year of high school this fall. I come from a very close knit family that has always been very supportive of me. I feel that a person’s family is the strongest influential factor in one’s life. I live with my brother, who is one year older than me, and also my mother. My mother has always been a strong advocate for my needs, both personally and academically. She has helped me find ways to deal with personal challenges, such as zoning out, being socially appropriate, controlling the volume and tone of my voice, etc. Academically she has made sure that my needs were always met both in IEP meetings and throughout the school year. Also, very importantly, she has always strongly supported and encouraged my advocacy for Asperger’s Syndrome. Socially my brother

Blaize has helped me a lot. He has a close group of good friends and over the years I too have become friends with them. I do have friends of my own, but I wouldn’t consider those relationships to be as strong as the ones

I’ve made with my brother’s friends. I’ve also had much support from other members of my family such as my dad and his girlfriend (who both live in

Chicago) and my grandmother. Just like my mother and brother, they too have always been supportive in helping me address my challenges and achieve

my goals. PYLN TOOLKIT PYLN

Family Involvement

Introduction

Family involvement is the way members of your family participate in your life. This is especially important when you have a disability, because your family is the closest support system you could have. They can help you learn more about your disability by helping you research information about it and find tips on how to get through life with it. They should be there for you when times are rough and you need guidance. They are the ones who love and understand you the most.

Support vs. Control

While it is important that your family gives you support and guidance, it is also important to understand the difference between support and control.

Support is when your family cooperates with you to help make important decisions about your life and encourages you to learn how to be as independent as possible.

Control is when your family makes decisions on your behalf. These decisions may be made without your input, or they may make you feel uncomfortable.

Here are examples of both:

 Support: Your family helps you plan what you want to do after you graduate high school (ie. Going to college, assisting with options concerning independent living).  Control: Your family wants to have you placed in assisted living after high school without discussing it with you because they think you can’t handle being independent.

Emotional Support

One of the most important things a family can provide is emotional support. Studies have shown that negative behavior in students is often linked to a low level

of family involvement. This is often because the student feels frustrated and PYLN TOOLKIT PYLN

thinks there isn’t anyone he/she can turn to for support. This type of support includes:

 Comfort  Encouragement  Patience

Your family can also help you learn how to appropriately deal with:

 Frustration  Anger  Disappointment  Sadness  Anxiety  Fear

Ways Your Parents Can Help You

Your parents are the ones who can provide the most support. Depending on your age group, the types of support they can provide vary:

Youth:

 Organize movie nights with your friends at your home or the theater.  Drive you and your friends to social gatherings (such as parties, school dances or any kind of meeting that encourages networking between individuals with similar disabilities).  Give you reminders to stay in touch with your friends via emails and/or

phone calls.  Assist with homework as needed, meeting with teachers to review progress or concerns, etc. to promote academic success.

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Transitioning Youth:

 Look at colleges and vocational schools with you.  Help you learn to navigate public transportation, learn how to drive, or find any other methods of transportation.  Assist in the research of independent living options.  Have discussions with you concerning course selection in both secondary and post-secondary education.

Sibling and Extended Family Support

Your parents aren’t the only members of your family who can provide support. Siblings (brothers and sisters) or extended family are another source of support. Siblings can help provide socialization opportunities by including you in their activities with their friends. They can also be resources in helping you learn about your questions and concerns about navigating life in general. In addition, grandparents (if they live close by) can be very important to your health and well- being because they are often retired and have more free time.

Family Involvement: Do’s and Don’ts

Do:

 Research your disability with your family to gain a better understanding of it. Some ways include: o Online research o Reading books about your disability o Networking with others who have had experiences with your disability o Looking for resources in your community, such as family support

groups and/or sibling support groups. Studies have shown that external support can lead to more family participation in a youth’s life.

 Learn how to be patient and tolerant of each other. PYLN TOOLKIT PYLN

 Acknowledge and embrace your disability and find ways to navigate the challenges that go along with it.  Take opportunities to learn how to be independent while you’re still living with your family. This will make the transition to independent living easier.  Find ways to navigate your surroundings (ie. wheelchair accessibility, guide dog, etc.).  Maintain open lines of communication between family members.  Be informed, respectful and cooperative with the school staff when discussing one’s IEP.

Don’t:

 Assume you’re less important than anyone in your family due to your disability.  Allow your disability to get in the way of family togetherness.  Reject support from your family.  Be afraid to ask for help from your family when needed.

Conclusion

Active family involvement is the most influential factor in a youth’s development. Studies have shown that family involvement leads to increased academic success through better grades and test scores, a more positive attitude about life, and more ambitions for one’s self. Studies have also shown that family involvement has a positive effect on a youth’s life regardless of ethnicity or the

family members’ levels of education.

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Peer Pressure

Peer Pressure: Bill’s Story

Hi, I’m Bill, I am hard-of-hearing and I am going to be a

sophomore in high school. This year, I’ve worked hard in school

and made good grades. I started all of my assignments ahead of time and made sure I tapped all of the resources I needed to access information. My hearing support teacher and my interpreter have been extremely helpful. I began to encounter some problems in January when a couple of other students started to pressure me to do their homework for them. They even offered to pay me to write papers for them and complete their worksheets. I didn’t feel comfortable telling my teachers-that would be snitching and would make more trouble for me with my peers.

I talked to my mom and older sister and her boyfriend. We discussed the problem over dinner. Talking really helped, especially with my sister and her boyfriend because they are only a few years older than me. They helped me understand that if I did homework for other people, it was not only dishonest but would ―open the door‖ for me to be used again. I would be known as a push-over.

I faced the bullies and told them to back off. After a week or two, they

stopped pressuring me. PYLN TOOLKIT PYLN

Peer Pressure

Everyone experiences peer pressure: children, teens, and adults; It is a normal part of social interaction. Peer Pressure can be positive or negative.

o Positive peer pressure encourages helpful, goal-fulfilling behaviors. Responding to positive peer pressure benefits your family, society, and YOU. Positive forms of peer pressure can direct you to apply to college, look for a good job, or join an organization that helps others or our environment.

o Negative peer pressure on the other hand leads you to take part in bad behavior. Negative peer pressure can be obvious or hidden. It can influence you to do things that may cause problems for you and others. Giving in to negative peer pressure can lead you to drink, smoke, take illegal drugs, bully others or destroy property.

Can youth with disabilities be more influenced by negative peer pressure?

YES!

Youth with disabilities may feel different from other youth. They may feel left out or alone and may lower their values to try to fit into a group. Teen- agers and young adults, youth with disabilities can be taken advantage of and manipulated.

How can youth with disabilities deal with negative peer pressure?  Take each day at a time  Talk about your feelings and experiences with youth who care  Learn to understand emotions and respect your self  Think ahead to avoid problems; think before you act  Avoid situations that can lead to trouble  Speak up and get help when you need it; advocate for yourself  Before making a decision, ask yourself:

o What would my family think?? o Would this go against my values?? o What would the consequences be?? o Is it worth it??

o How would this affect me?? TOOLKIT PYLN

How to Socialize and Meet New People: Bond’s View

Socialization is a term used to describe casual interactions between people. Most people already know or have been shown how to socialize, but for some this ability doesn’t come as easily. Some people have problems with reading body language, facial expressions, tone of voice, making friends and/or knowing what is or isn’t appropriate in social settings. This section will help you learn about all of these.

Body language and facial expressions are very important forms of non-verbal communication. They can effectively display one’s emotions and/or what one might be thinking. For example: if a person was smiling, he/she would most likely be in a happy mood. If a person was frowning or had his/her head down he/she would most likely be feeling sad or upset. You can use body language and facial expression to gauge a person’s mood and determine how to approach him or her.

Tone of voice is also a good indicator of how one might be feeling. If a person’s voice was loud while telling you what you should do, he/she would be being demanding. If a person’s voice is soft and/or quiet he/she might be feeling shy or not in the mood for talking. Tone of voice is also a good indicator of how one might be feeling.

You can also use body language, facial expression, and tone of voice as you communicate. Being aware of your expressions and tone of voice can help you get your ideas and feelings across. You can also avoid expressions or tones that could negatively affect how people interpret your interaction with them.

Making friends is difficult for those who aren’t very good at socializing. When meeting new people, it’s difficult to start a conversation with them because you don’t know what they like to talk about. Common topics you can bring up to help break the ice include music, current events, movies, the weather, etc. ( avoid bringing up controversial topics) . If you find that you have something in common,

take the conversation from there. If you can’t, the other person might not be

interested in talking and you should politely leave the conversation and look for someone else you could talk with. When the conversation is over, tell the person you were talking to that you enjoyed your time with them and hope to keep in touch

if you’re getting along well with him/her. TOOLKIT PYLN

Relationship Building

Chaz & Allison on Relationship Building

Relationship building is something that we learn throughout our lives and is something we get better at as we develop. It can be a key part in transitioning at any point in life. It is critical to develop a group of local and community contacts to be able to provide you a source of information. It is important to be able to reach out to someone and they can guide you to the source of information you need. Relationship building gets easier with time as we start to learn more do’s and don’ts of socializing and networking.

Here are some DOs and DON’Ts to get you started:

DO: . LISTEN – be attentive and focused when listening to others . Pay close attention to body language when having in-person meetings. . Use your friends as an information source. . Keep all your phone numbers in an accessible place. . If you keep an electronic device to store contact information, be sure you back-up your lists (such as phone numbers and addresses) in another location.

DON’T: . Discuss controversial topics such as religion and politics when you first meet someone.

Tips  Follow-up with your community contacts on a regular basis.

 Have a purpose when contacting folks – an objective you want to complete.  People are all around you to help you…don’t be afraid to ask!

 Finally – BELIEVE IN YOURSELF! PYLN TOOLKIT PYLN

Mentors

A Mentor is someone that you can trust as a counselor or guide to assist you with career planning, program planning, and overall support. This person is someone to use as an adviser, supporter, and sometimes friend. This person is usually older and always more experienced. It is there to help and guide in overall development.

 Where to get a Mentor (some sites to get you started) . www.pa-ementor.org/contact.shtml . www.mentoring.org/

 How a Mentor can help – a Mentor can guide you along your chosen career path. They can be a valuable source of information as most often they have already been through many of the things you are dealing with currently. Trust them!!!

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Sexual Assault/Predators

Allison on Sexual Assault/Predators

Definition

Sexual assault is any unwanted physical or sexual contact. This can include unwanted touching and/or sex.

Statistics

-Between 40-90% of females with disabilities are raped -3-10% of rapes are reported -Only 5% receive counseling

What to do if you are a victim of sexual assault

If you feel that you have been sexually assaulted, the first and most important step is to tell someone that you trust. Don’t be afraid. You have been abused, and abuse should never go unreported. The person you tell will most likely encourage you to call the police. If you’re by yourself and don’t have a trusted person around to talk to, call the police yourself. If you suspect that you might be pregnant or may have contracted an STD (sexually transmitted disease) as a result of sexual assault, it is extremely important that you see a doctor. In fact, seeing a doctor right away could help to catch the assaulter, because DNA samples can be collected during the examination.

Seeking additional help

While it is certainly important to ensure your physical safety following sexual assault, it is just as important to make sure that you heal mentally as well. It is probably a good idea to seek counseling. Many insurance companies will cover

counseling sessions, but there is usually a free counseling center in most local PYLN TOOLKIT PYLN

communities. There are also specific national and local organizations which deal with recovery from sexual assault. They often provide individual and group counseling as well. Examples of some agencies include Pittsburgh Action Against Rape, and The Center for Victims of Violence and Crime.

Preventing sexual assault through internet safety

It’s very common for people to meet over the internet. However, there can be definite safety risks. It’s important to be very careful when talking to people over the internet, because while many people are who they say they are, many others lie about their identity. Here are some general internet safety tips to follow.

1. Never give out personal information such as your last name, address, or phone number in a chat room, or on a site like MySpace. You can also set your account as private so that only certain people can contact you.

2. If you feel that someone is chatting to you in a threatening or openly sexual way, block him or her immediately.

3. Always be cautious of adults who try to chat with you. Obviously, there are many good adults out there, but many sexual assault crimes that begin with online chatting are adults preying on youth.

4. If you do make a friend your own age and want to meet with them, decide on a public location, and take trusted friends with you.

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Individual Interests and Community

Developed by youth for youth

1st Edition July 2009

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Hobbies and Interests

Rachel and Jeff on Hobbies and Interests

Hobbies and interests are activities or things that you enjoy doing and find fun. It is something special that should be important to you. There are so many hobbies/interests in the world, so finding the right one for you can be hard to do. When you do find the right hobby/interest, it can help you in many parts of your life. Once you find something that makes you happy and you find interesting, it could grow into something more like a job or career.

Here are some questions to help you think about different hobbies and interests:

1. What does hobby/ interest mean to you? ______

2. Do you like working outside? Often Rarely Never

What do you like to do outside?

______

3. Do you like working indoors? Often Rarely Never

What do you like to do indoors?

______

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4. Do you collect anything? Yes No

What do you collect?

______

5. Do you like to play or watch sports? Yes No Sometimes

What kind of sports do you like?

______

6. Do you like to build or plant things? Yes No Sometimes

What do you like to build or plant?

______

7. Do you like to do arts and crafts? Yes No Sometimes

What kind of arts and crafts:

______

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8. Do you like to travel? Yes No

Where would you travel to?

______

9. Do you like working with or helping people, animals, or being alone? Circle all that apply: People Animals Alone

What kind of work do you like to do?

______

10. Do you like learning new things? Yes No Sometimes

If so what is it: ______

11. What do you like to do for fun? ______

After finishing this worksheet, you should have some ideas of what your interests are. For example, if you put down that you like working with animals, volunteering at an Animal Shelter may be the hobby for you. To find a hobby that is a good fit, it is important to think about your interest first, and pick something that relates to it. If you need help finding the right fit ask a friend, teacher, or professional. If you find a hobby you like, and have opportunities to experience and practice the hobby, it could lead to an exciting career. Whether or not your hobby becomes a

career, it is important to do things you enjoy in order to live a balanced life. PYLN TOOLKIT PYLN

Joe and Rachel’s Ideas on Community

Involvement There are many ways to get involved in your community, including accessing your neighborhood resources, participating in events and activities, and volunteering.

First, it is important to figure out what your interests are, and what kinds of things you can do in your community. These could include organizations such as the YMCA, youth groups, church groups, recreational facilities, libraries, theaters, or sports facilities. Look for those that offer activities and programs around your interests.

Next, consider what you will need in order to participate in these activities or facilities. Examples include transportation, funding, and any accommodations that you might need.

Another way to access your community is to volunteer. Using websites, research what organizations in your community offer volunteering opportunities. These could include hospitals, personal care homes, or foundations such as MDA or Autism Speaks. Then contact the organizations or foundations and ask for information, or possibly set up a meeting with the volunteer coordinator.

Community involvement brings out the best in people and shows that they

care.

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Arts, Music, Drama

Kelly and the Arts

My name is Kelly and for most of my life I have been expressing myself artistically. My passions continued throughout college, where I studied in theater, music, and philosophy. Nowadays, I sing and play the piano, bass guitar, and drums in a band. I also have performed in over 25 theatrical productions. Expressing myself through art gives me an outlet to express what sometimes words cannot explain. I've also found strengths within my disabilities through the Arts. Performing on stage, many of my talents are actually helped by my symptoms; for example, my excessive energy helps me be a better performer whether I am singing, playing an instrument, or acting on stage. I believe that even my anxiety disorder has helped me become more aware of my emotions and ―presence‖, which can be very beneficial for an actor. All of the Arts have allowed my always-active mind to explore while remaining relatively grounded. I believe that everyone should attempt to create; to realize this rewarding experience, but also to attempt to connect to others through art.

Disability and the Arts

It seems like all too often our lives are so full of stress and ―business‖ that we don't have a way of releasing all of the tension and exploring that ―other side‖ of our brain. For people with disabilities, it can be especially difficult-- for a variety of reasons-- to express ourselves. The Arts are a perfect venue for exploring self-expression and creativity. So, what do we mean by ―The Arts‖? In this context, we are referring to various types of self-expression, such as music, drama, dance, and also fine arts like painting and photography. Learning to express yourself artistically might not be easy for everyone, but remember, it's more about the process than the result.

People with disabilities historically have a big connection with the Arts. An obvious example would be a musician like Ray Charles, who expresses himself musically and is blind. But it is astounding to see how many actors, musicians,

artists, and comedians, to mention a few, have invisible disabilities such as A.D.D or TOOLKIT PYLN

Bi-Polar Disorder. Perhaps it is a certain way of thinking that is related to these types of disabilities that makes us creative, but there is definitely seems to be a correlation. The success of many of these artists should be an example of how beneficial some disabilities are in connection with the Arts.

Certain people with disabilities often have a high level of self-understanding and awareness, which is one of the keys to self-expression. Self- expression is a truly therapeutic aspect of life, and is one I believe everyone should posses in some regard. So perhaps take some time after reading this and research some areas that you could get involved in the Arts; whether through your school or community, there are several resources out there for you (the website www.vsarts.org is a great place to start)! And if you ever feel discouraged, www.disabled-world.com has a great section of Famous People with Disabilties that

should show you that you are not alone!

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Community Based Services

As you transition from school to the rest of your life, you will no longer have the support you receive from teachers, transition coordinators and school. Help is out there! You might want someone to help you with finding a job, going to school and living on your own. Here’s a list of organizations that you can contact:

The Department of Health is an organization that provides information about health care and health care related services. This organization is run by the United States government. Some of the topics they deal with are:

 Preventing disease, including immunization services  Assuring food and drug safety  Health information technology  Improving maternal and infant health  Faith-based and community initiatives  Substance abuse treatment and prevention  Medical preparedness for emergencies  Department of Heath  Website: http://www.dsf.health.state.pa.us/health/site/default.asp  Toll Free: 1-877-724-3258

The Department of Public Welfare’s mission is:

 Promote, improve and sustain the quality of family life;  Break the cycle of dependency;  Promote respect for employees;  Protect and serve Pennsylvania’s most vulnerable citizens; and  Manage our resources effectively.  Programs operated by the Department of Public Welfare include Medicaid medical benefits and services for individuals and families with disabilities  Many of the programs are operated at the county level, so check the blue pages of your phone book

 Department of Public Welfare . Website: http://www.dpw.state.pa.us/

. Phone #: (717) 787-4592 PYLN TOOLKIT PYLN

Office of Vocational Rehabilitation:

OVR’s mission is: To assist Pennsylvanians with disabilities to secure and maintain employment and independence.

 Office of Vocational Rehabilitation (OVR)  Website: www.dli.state.pa.us then click disability services  Phone #: 1-800-442-6351  TTY: (866) 830-7327

Centers for Independent Living (CIL)-- affiliated with the National Council on Independent Living (NCIL) whose mission is to:

Advance independent living and the rights of people with disabilities through consumer- driven advocacy. NCIL envisions a world in which people with disabilities are valued equally and participate fully. Centers for Independent Living (CILs) are managed and staff by a majority of people with disabilities and provide independent living skills training, information and referral, peer counseling and advocacy.

 Centers of Independent Living  Website: http://www.ncil.org/index.html  Phone #:  Voice: (202) 207-0334  TTY: (202) 207-0340  To find a CIL in your area, visit: http://www.pcil.net/

Office of Developmental Programs (ODP) Mission:

Our mission is to provide individuals with mental retardation, autism, and their families the services and supports they need and the opportunity to make real choices about living, working and options for social activities to enable them to live in and participate fully in the life of their communities. The services are provided through the county MH/MR office.

ODP Services

. Website: http://www.dpw.state.pa.us/About/ODP/ . Central: (717) 705-8396 . Northeast: (570) 963-4335 . Southeast: (610) 313-5844

. Western: (412) 565-5226 TOOLKIT PYLN

Office of Mental Health & Substance Abuse Services (OMHSAS) Mission and Vision:

Every person with serious mental illness and/or addictive disease, and every child and adolescent who abuses substances and/or has a serious emotional disturbance will have the opportunity for growth, recovery and inclusion in their community, have access to services and supports of their choice and enjoy a quality of life that includes family and friends.

OMHSAS Goals:

 Transform the children’s behavioral health system to a system that is family driven and youth guided.  Implement services and policies to support recovery and resiliency in the adult behavioral health system.  Assure that behavioral health services and supports recognize and accommodate the unique needs of older adults.

 Mental Health Services . Website: www.dpw.state.pa.us/About/OMHSAS . Regional Phone #: . Central: (717) 705-8396 . Northeast: (570) 963-4335 . Southeast: (610) 313-5844 . Western: (412) 565-5226

PA Workforce Development/CareerLinks

From this website portal you will be able to access a number of online resources that will provide information on conducting a job search, Unemployment Compensation, disability services, labor market information, the Trade Act program, training and education, Veterans benefits, grants and financial aid.

https://www.cwds.state.pa.us/cwdsonline/Admin/ViewHomePage/PublicHomePage.aspx

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Social Security

 The Social Security Administration (SSA) manages programs like SSI, SSDI, work incentives and benefits planning to help you plan for work, even if you’re on SSI.  The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources.  The Social Security disability insurance program (sometimes referred to as SSDI) pays benefits to you and certain family members if you worked long enough and paid Social Security taxes.

 Social Security Administration (SSA)  Website: www.socialsecurity.gov  Phone #: 1 (800) 722-1213  Benefits planning list for PA: www.dpw.state.pa.us/Resources/.../Pdf/Fall2005BPAODirectory.pdf

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BALANCE

Developed by youth for youth

1st Edition July 2009

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Balance and Dealing with Stress

Balance and Dealing with Stress: Rachel’s Story

Hi, my name is Rachel Kallem and I have Bipolar Disorder.

I was diagnosed when I was 17 years old and while it has been a struggle, I have learned how to cope. Having Bipolar Disorder means I don’t just have ups and downs, but I have manic episodes and depressive episodes.

When I’m manic I don’t need a lot of sleep and I have a ton of energy, I’m impulsive – which means sometimes I make bad decisions, and I can even become paranoid. When I have a depressive episode I feel hopeless and helpless – I don’t take joy in anything and I just want to be alone. Having

Bipolar Disorder is a challenge, but I’ve learned how to manage it. By living a balanced life I can better control my disorder. Triggers that can lead to cycling (having an episode) are not sleeping enough and when I don’t take care of myself. If I eat right, exercise, and get enough sleep I have fewer episodes and I feel better. Through taking care of myself I can manage my disorder and be happier. It’s simple steps like going to bed at a reasonable hour and making sure I go to the gym that really make the difference for me and help improve my quality of life. Even if you don’t have a psychiatric disability it is important to take care of yourself and live a balanced life – it can make anyone feel better and be happier! You are responsible for taking

care of you, so take it seriously and take care of yourself – you deserve to

be happy! PYLN TOOLKIT PYLN

Rachel’s Suggestions for Dealing with Stress

Everyone deals with stress – stress is a normal part of life! But learning how to cope is key. While all people experience stress, for some, stress has more severe consequences like leading to anxiety/panic attacks or manic episodes.

Stress can be devastating for me because when I am really stressed out it can trigger a manic episode. Thus, I have to be careful and manage stressful situations so they do not result in a manic and depressive episode. A good way to manage stress is identifying your triggers. Some common triggers that can cause stress are:

 School work/job pressure  Social situations/family situations  Phobias – which are severe fears (like the fear of flying)  Sensory overload – which means being overwhelmed by too many distractions

For me, school work and job pressure can be overwhelming and stressful. If I have a big assignment due, I find myself getting really stressed and worried about being able to complete the project.

Stress is normal since life is made up of some stressful situations, so what is important is learning how to cope with stress. Stress can’t always be avoided, so learning how to manage your stress is critical!

Here are some strategies people use to cope with stress. See which ones work for you:

 Listening to music  Exercising/taking a walk/doing yoga  Talking with a friend/family member/therapist  Taking prescribed medication

 Hobbies  Relaxing techniques – like taking a bubble bath  Spiritual outlets, like going to your place of worship

 Physical contact – like getting a hug from a friend or family member PYLN TOOLKIT PYLN

It is important to find a coping style or coping techniques that work for you. For me, if I get stressed out I like talking with a friend or family member and listening to music. But, I also take medication to help me reduce stress. Medication allows me to calm down and cope better with stressful situations.

Choosing a healthy lifestyle is also essential. Eating well, exercising, and getting enough sleep is really important and will help you manage your stress much better. For me, if I eat a healthy diet, exercise regularly, and sleep enough I am more likely to handle stressful situations better and better yet, things are less likely to stress me out. By pairing a healthy lifestyle with coping techniques (like listening to music) I can live happily and handle my stress much better!

Stress is unavoidable in reality, but recognizing toxic situations can help you avoid some stressful environments. A toxic situation is a scenario in which you set yourself up for disaster by making bad choices. For example, I know if I take a full course load in school I am more likely to get overwhelmed by all the work. Thus, I take a reduced course load (fewer classes) and therefore avoid a toxic situation which might lead to a manic episode. Recognizing a toxic situation is really helpful in avoiding stress. Another example of a toxic situation is if I do not take my medication. I am definitely more likely to be stressed if I skip my medications, so I avoid that scenario all together by taking my medications as prescribed by my doctor.

So remember:

 Know how stress affects you! What happens when you are stressed out and what can you do to cope?  Identify your triggers! What things are likely to make you experience stress?  Pick coping techniques! What coping techniques work well for you to help you feel less stressed out?  Live a healthy life style! Make sure to eat right, sleep enough, and

exercise because a balance life is a balanced approach to managing stress.  Avoid toxic situations! By avoiding toxic situations you are more likely to be successful. TOOLKIT PYLN

Time Management

Bond on Time Management

Time management is the development of strategies used to efficiently maximize the use of one’s time. It is a very important form of organization. When making schedules, routines or plans, one of the best ways to manage your time is to form an outline that will help you determine what you need to do and when to do it.

Here are some tips which may help you with this:

 Prioritize (What needs to be done the soonest?)  Assess how long it will take to complete each task.  Incorporate a reasonable amount of free-time into your schedule to avoid any potential stress.  Know what other people are planning in order to avoid conflicts in schedule. (For example, if two of your friends were having birthday parties on the same day you couldn’t plan on going to both of them. You would need to choose which one to go to.)  Be aware and respectful of the possibility that the plans of others may not fit into your plans.  Make sure the plans you are making are realistic based on the time you have available.  Keep in mind what time of the day you are most productive when fitting work in.  Use a watch or a cell phone clock to help you keep track of the time.

Even though it is important to stick to a schedule it is also important to be

flexible in case things don’t go as planned. If you invited someone to your house at 4:00 p.m., and he gave you a call at 3:55 p.m. to tell you he would be a half-hour late, it would be best to accept the fact and modify your plans. Personally, I have

some trouble with being flexible when the time calls for it because I’m too PYLN TOOLKIT PYLN

concerned with punctuality (I believe this is probably due to my Asperger’s Syndrome). For example, if I had a guest over who said he would stay until 7:00 p.m. and the clock reads 6:58 p.m. I would inform the person of the time and try to help him get ready to leave in a way that might accidentally imply that I was trying to kick him out. When trying to keep or make a schedule, one must consider the feelings, needs, and plans of the people around him/her.

If you have homework to do, a book to read and/or a school project to complete, it is best to split the work up into sections (or chapters in the case of books). For example: if there’s a project that seems to require much work and is due in two weeks it’s possible to do a single part of it each day if you get an early start on it. With a book, you could just read a chapter or a certain number of pages each day. The worst way to handle a project is to procrastinate. Putting it off until the last minute will force you to do the whole project at once, and this causes a huge amount of unnecessary stress. It could even cause you to forget you ever had a project to do and, if it was a school assignment, you would get a failing grade for not turning it in.

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Living a Balanced Life

Kate on Living a Balanced Life

Part of everyday life includes completing all of your activities and responsibilities in your day, but sometimes it may seem that 24 hours in a day just is not enough! However, living a balanced life means getting done what needs to get done, having some leisure time for yourself, and of course, catching those very important zzz’s.

Activity Time Management: How a Normal Day Flows

Worksheet: Mapping out your daily schedule to squeeze in you, your disability, and pretty much everything in between!

The PYLN knows having a disability can sometimes add more responsibilities to your day.

Filling out your ideal schedule below can give you insight into how you would like to

spend your 24 hours each day.

Remember to include sleeping, eating, and other activities you want to get done during your ideal schedule.

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Ideal Schedule

12am-1am

1am-2am

2am-3am

3am-4am

4am-5am

5am-6am

6am-7am

7am-8am

8am-9am

9am-10am

10am-11am

11am-Noon

Noon-1pm

1pm-2pm

2pm-3pm

4pm-5pm

5pm-6pm

6pm-7pm

7pm-8pm

8pm-9pm

9pm-10pm

10pm-11pm

11pm-Midnight TOOLKIT PYLN

Now choose a typical day and fill out your ACTUAL schedule below.

12am-1am

1am-2am

2am-3am

3am-4am

4am-5am

5am-6am

6am-7am

7am-8am

8am-9am

9am-10am

10am-11am

11am-Noon

Noon-1pm

1pm-2pm

2pm-3pm

4pm-5pm

5pm-6pm

6pm-7pm

7pm-8pm

8pm-9pm

9pm-10pm

10pm-11pm

11pm-Midnight TOOLKIT PYLN

Follow-Up Questions:

1. How does your actual daily schedule compare to what your ideal schedule looks like (ex: are you sleeping more/less in your actual schedule)?

2. Why do these differences exist? Were there any differences that surprised you?

3. How can you change your actual schedule to look more like your ideal schedule (ex: should you be doing your school work earlier so you can get more sleep)?

Procrastination

When you put off your work until the night before it is due or an activity that needs to be done by a certain date, your entire schedule can be affected. Maybe you will not get to watch your favorite TV show or maybe you will not get to ―shop till you drop‖ with your friends because you procrastinated. So how do you have your cake and eat it too? Well, here’s how:

Helpful tips to Stop Procrastinating:

 Work ahead and plan accordingly.  Break up jobs or assignments into smaller, more manageable parts.  Set deadlines and make priorities.  Use a calendar or planner to keep track of all your assignments, deadlines,

and progress.  Complete your work in a non-distracting environment to stay focused.  Think about your ideal schedule and what you want to get done; set goals

for yourself! PYLN TOOLKIT PYLN

 Rest

Sleep - Living a balanced life certainly includes sleep!

Chaz on Rest

Calculating Your ZZZ’s

Activit y

Worksheet: You may have never sat down and taken a hard look at your sleeping habits, but those precious hours can definitely help get you on the path towards living a balanced life.

1. How many hours a night do you actually sleep?

2. How many hours a night do you think you should be sleeping?

3. What can you do before bed to get a good night’s rest? Do you read, listen to music, etc.?

For a balanced life, it is suggested by professionals that every person gets eight hours of sound sleep per night to be at their best. Be sure to relax before turning out the light because worrying about deadlines, exams, and other stressors can prevent someone from falling asleep or sleeping throughout the night. Without a proper amount of sleep, your body will not be able to recharge; you may not be

alert or have enough energy to take on the next day’s busy schedule. PYLN TOOLKIT PYLN

Tips for a Good Night’s Rest:

 Avoid long naps or naps in general.  Minimize noise and light in your room.  Stay away from caffeine before bedtime.  Stick to light snacks close to bedtime—no heavy meals!  Relax and unwind before sleeping.

A Balanced Life Takes Work!

Keep in mind all that goes into living a balanced life, such as creating a schedule (and sticking to it!), working ahead and not procrastinating, and maintaining an adequate sleep routine. You live a very busy life, but it is important to remember all that goes into keeping yourself healthy and happy. A little bit of

effort on your part can go a long way in creating and maintaining a balanced life!

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Spirituality

Kelly and Her Faith

Spirituality is a topic that is not often discussed openly, even though it is a vital part of many people's lives. Recent polls have revealed that nearly 87% of Americans consider themselves religious, and 92% believe in God. Spirituality can sometimes be a subject people avoid for fear that they are infringing on other people's beliefs, but when faced with these statistics, it is obvious that many share a need for spirituality in their lives. Spirituality can be connected with an organized religion or a personal one, and involves finding meaning in this world and what it means to exist in it.

People with disabilities often struggle with understanding ourselves and our disabilities (which are often deeply connected with who we are as a person and how we view ourselves). We also tend to wonder how we fit into the rest of our culture, and the ―big picture‖ of our world. In this search for meaning and purpose in our lives, many of us find spirituality to help us in answering the ―big questions.‖ In believing in a higher power, we find the hope and strength that can help us through some of the hardest times (and also some of the better times) of our lives. We also can realize that we do have a very special place in the ―big picture‖ of our world, and perhaps can teach others about life as well!

Being aware of my spirituality has been very beneficial in trying to make sense out of my Attention Deficit Disorder and General Anxiety Disorder. I have often been tempted to view my disabilities as a weakness in this world, but over the years I have come to realize that they sometimes can be blessings. I believe that God has given me creative talents that I have discovered are very common in people with A.D.D. My symptoms of both of my disability actually make me a

stronger performer on stage. Of course there have been negative affects as well, but I have even learned and grown through my negative experiences with my faith and my disabilities. Part of making sense of my disability involved my faith in God. Because of my faith, I have more purpose, motivation, and connection to others in my life. TOOLKIT PYLN

Even if you don't believe in a higher power, you can believe in your inner spirit, which has benefits like self- empowerment and motivation. Many people who believe in themselves also believe in a higher power, which can give them strength. A way to feel connected with yourself and/ or a higher power is to practice meditation—such as yoga and prayer. Both of these activities involve a quiet time of reflection, apart from others, and can make you more relaxed and focused. Any way you view your spirituality, it is often a very healthy and therapeutic practice. So next time you are talking with a friend, family member, or even a counselor, don't feel afraid to bring up the subject of spirituality-- it's a natural and beneficial part of life!

My Leap of Faith- Josie

―I thank God for my handicaps, for, through them, I have found myself, my work, and my God.‖ -- Helen Keller

This quote by Helen Keller sums up a lot about how I have come to accept my disability and faith. For me, disability and faith have a symbiotic relationship. I grew up in a Christian home and have had my disability since birth so these were always normal parts of life. However, it was not until I truly accepted my disability and grew in my faith that I began to understand myself and my role in the world. Once I started viewing my faith with an acceptance of my disability I was able to see the true role of disability in creation. Disability is not an accident, it happens for a reason and people need to treat it with dignity and respect. Life, especially with a disability, is often out of our control. My faith helped me in managing these situations and being able to handle whatever comes my way. My faith helped me to accept my disability and find pride in who I am as a creation that was purposefully made. My disability is not a mark of an erroneous state, but rather it is a symbol of my unique identity. If I had the opportunity to be medically cured I would refuse because I would no longer be who I was meant to be. I would lose my identity and purpose in life. I feel that I am meant to spread disability awareness

and to speak for the people who cannot speak for themselves. TOOLKIT PYLN

Accessible Faith Communities

Allison’s Story on Faith Communities

Spiritual health is just as important as physical and mental health. Therefore, it’s important for many people to find a faith community in which they can fully participate and feel accepted. I am fortunate in that I was always accepted in my faith community. I grew up attending a Catholic church near my home. When I was seven, I decided to join the children’s choir. The director was very accommodating, and recorded the songs for me so that I could learn them by ear. As my vocal talent developed, I was given various opportunities to sing solos. I always felt respected by the other members of my church, and I don’t feel that anyone thought less of me because of my disability.

Barriers to Inclusion in Faith Communities

Barriers often exist in the form of stigma caused by negative attitudes of people without disabilities towards people with disabilities. Some people also mistakenly believe that disability is a form of punishment from God, and therefore do not want people with disabilities to be a part of their faith community. Others simply are not educated about the things that they can do to help people with disabilities to feel included. These are the people that one might be able to reach most easily.

Another major barrier to inclusion in faith communities exists in the form of inaccessibility of the actual buildings in which worship takes place. For example, in many churches, you must climb stairs in order to reach the sanctuary. This essentially isolates individuals in wheelchairs who may wish to worship at that particular church. The leaders at that church should be educated about options for

making the church accessible, such as wheelchair ramps and stair lifts. PYLN TOOLKIT PYLN

Participation in a faith community is a right which must be extended to individuals both with and without disabilities.

Ways to Ensure Inclusion

 Ask for the accommodations you need. Outreach and helping others is a form of ministry.  Educate others about disabilities and accommodations.  Volunteer for various activities in your church like spaghetti dinners, bingos, choir, etc.  Whenever possible, try to take on a leadership role. For example, offer to lead a prayer.

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DIET AND EXERCISE

Developed by youth for youth

1st Edition

July 2009 PYLN

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Diet and Healthy Eating

Lewis and Rachel on Diet and Healthy Eating

It is important to take care of yourself – and life on your own can pose some unique challenges to your health. For example, finding time to eat balanced meals while taking classes, doing homework, or working can be tough. It can also be hard to make healthy food choices because life on a budget means eating cheaper, which makes fast food more affordable. When people get busy, they are more likely to eat a quick fast food meal instead of a healthier one to save time. However, despite your busy schedule there is a lot of value to eating well, eating on a schedule, and avoiding unhealthy foods or only eating them in moderation (small amounts).

Stress can also make people gain weight. Some people will overeat when they are stressed out, and for most people life has some stressful moments. However, some people do the opposite when they are stressed and do not eat a lot of food, and this can be dangerous too. It is important to keep a healthy diet because you will be at your absolute best!

In addition to stress, your emotions can affect what you eat and thus impact your weight. When some people are anxious or depressed they will eat unhealthy foods which can lead to weight gain. However, some people are affected differently and if they are depressed they will not each very much which can lead to unhealthy weight loss. Some people may develop eating disorders, which is basically when you have trouble eating healthily. This can either mean you eat too much (binge eating disorder), or you do not eat enough (anorexia nervosa), or you eat and then purge (bulimia nervosa). For more information on eating disorders you can talk to a professional or check out the following website: http://www.nationaleatingdisorders.org/

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Eating disorders are dangerous and can cause physical and emotional problems for people. If you suspect a friend has an eating disorder it is important to refer them to help right away. If you are worried that you may have an eating disorder please talk to a health care professional! Eating disorders are easier to recover from if an individual gets early treatment, so be sure to get help sooner than later.

Something to keep in mind: if you are on any psychiatric medications a related side effect can be weight gain or weight loss. It is important to know what side effects could affect you, so talk to your doctor about what to watch for. If your medications can lead to weight gain, be sure to exercise regularly to prevent becoming unhealthy. If your medications might lead to weight loss, monitor your food and make sure you are eating a balanced diet.

Dieting

America has become the most overweight country in the world. The United States has an obesity problem and it is mainly because of the availability of fast foods and the lack of physical activity. Hollywood has been no help; they show images of everyone being so thin. These images of thin people make everyone question what a normal weight really should be. The pressure to be thin has caused many of our young people to turn to dieting. Some young children see the people around them dieting and they start to think that they should be worried about their weight too. If a young person was to start dieting, they could experience some unexpected repercussions like eating disorders or they could develop a distorted body image of themselves. Everyone has become obsessed with dieting. Everywhere that you look, you see advertisements for diet programs. There is the Jenny Craig diet plan, the Weight Watchers diet plan, NutriSystem, and The Atkins diet to name a few. There is no magic to dieting. The one way to really lose

weight is to eat fewer calories than you burn, it is just that simple. PYLN TOOLKIT PYLN

A Proper Diet

One of the most important things for many people is their self image. Everyone wants to be comfortable in their own skin. If everyone ate properly and exercised several days a week, there would not be a need for dieting. If you do find that you need to lose a few pounds, there is a right way to lose the weight. To start a diet, you will need to learn what a balanced diet really is and you will need to learn about what is meant by a portion size. Eating a balanced diet means eating a wide variety of foods. A traditional way of getting a balanced diet has been to eat a certain number of portions from certain food groups. The five basic groups are vegetables; fruit; bread and cereal; dairy; and meat, poultry, fish, and legumes (dry beans, lentils and peas).

TOOLKIT PYLN

Everyday everyone should have four servings from the fruit and vegetable groups. From the bread and cereal groups, it is recommended that you have six servings, which include some whole-grain breads and cereals. The recommended servings from the milk and cheese group vary with age; the highest recommendations for these are for teenagers and for nursing mothers and they need at least four servings each day. Every day you should have two servings from the meat, poultry, fish or bean group.

Know your Portions

Portion sizes can be confusing. Use some of these comparisons to help you to understand what is meant by a portion size or a serving size. Add an updated food pyramid (visual)

 Vegetables and fruits should be about the size of your fist.  A serving from the meat, fish, or poultry group should be the size of a deck of cards.  Limit snacks like pretzels and chips to about the size of a cupped handful.  A serving of pasta should be about the size of one scoop of ice cream.  A potato should be about the size of your computer mouse.  A piece of cheese should be the size of your thumb.

http://mypyramid.gov/

MyPyramid offers personalized eating plans and interactive tools to help you plan

and assess your food choices based on the Dietary Guidelines for Americans. PYLN TOOLKIT PYLN

Alcohol and Medications

Rachel on Alcohol and Medications

A normal part of getting older is meeting new people and making friends. This can take place in classes, clubs, work, or at parties. Sometimes social events with these new friends involve drinking alcohol. Some people choose to drink alcohol, but it is important to know that this is a CHOICE. If you are 21 and want to drink alcohol you can do so, but no one should pressure you into drinking. If you do choose to drink, it is important to do it safely.

There is a common stereotype that drinking is ―normal‖ and everyone does it, but for many people drinking alcohol is not part of their every day experience. If you do however choose to drink it is important to remember that drinking in moderation (small amounts) is important. It is okay to drink a little bit of alcohol, but going over board is never a good idea and could be very dangerous. Many people have fun without drinking and it is important to know you can drink responsibly and still have a good time!

Remember:

Drinking a little can be considered normal behavior, there is nothing wrong with one drink if you are legally allowed to drink alcohol, but drinking to excess is NOT normal.

The dangers:

Drinking can be dangerous, and some people who start drinking alcohol experience problems. For example, some people start drinking when they are upset or angry as a way to escape their problems and this is very unhealthy. Sometimes, people will

self-medicate with alcohol and this is very dangerous. Drinking never solves your

problems, but it can create new ones! PYLN TOOLKIT PYLN

Here are some warning signs that you might have a problem with alcohol:

 If you drink alone  If you can only have fun after a few drinks  If you pass out because you drink too much  If you drink to escape your problems  And if you ―need‖ a drink to function

Having a disability and what it means in regards to drinking:

Having a disability can sometimes mean you have to be more careful with consuming alcohol. Don’t try to keep up with your friends. Alcohol effects everyone differently with or without a disability! Both your gender and weight can affect how your body handles alcohol too, so it is important to know your limits and take it easy.

If you take medications, it is important to talk to your doctor and see if there are any negative interactions that can result if you drink while on your medications. Your safety is the number one priority, so make sure you communicate with your doctor and find out what is safe for you!

Another safety issue is making sure you watch your drink at all times if you are at a party or social event. Drinks can be ―spiked,‖ meaning drugs or more alcohol can be added to some’s drink without his or her knowledge. This can be very dangerous, so be smart and always pour your own drink and hold onto your drink at all times. Remember you need to be 21 or older to legally drink!

Be safe, be healthy – drink responsibly or don’t drink at all!

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Sports and Exercise

Chaz and Lewis on Sports and Exercise

Maintaining Your Body

Physical activity is critical to maintaining a healthy mind and body. Working out does not mean you have to spend hours in the gym lifting a thousand pounds. Working out can mean doing anything that involves physical activity.

Exercise

Why is exercise important? - Exercise keeps us active and overall healthy. - Exercise is one of the best ways to control weight. Exercising will overall boost your metabolism which will assist in controlling your weight. - Exercising regularly, builds strong muscles, gain stamina, and increase energy.

Workout information

- Before starting a new diet or exercise program, it is wise to check with your health care professional.

- Before any type of workout, make sure you stretch well to prevent injury.

- Always workout with a partner to be sure you do the exercises safely and

properly.

- If you are new to working out, don’t overexert yourself.

- If you’re working out with someone else that is a workout veteran, don’t

under any circumstances, try to keep up with them. Go at your own pace. TOOLKIT PYLN

More Tips for Exercising: http://www.walgreens.com/library/contents.html?docid=000029&doctype=10

 Do not eat for 2 hours before vigorous exercise.  Drink plenty of fluids before, during, and after a workout.  Do warm-up exercises for 5 - 10 minutes at the beginning of an exercise session. Low-level aerobic exercise is the best warm-up.  Adjust your activity level according to the weather, and reduce it when you are fatigued or ill.  When exercising, listen to the body's warning symptoms.

Examples of Exercise:

 Cardiovascular Workouts . Pushing (propelling a wheelchair) a mile or a certain distance . Running on a treadmill . Going for a bike ride or using an arm bike . Playing any sport . Swimming

 Sample Weight Workout . 10- repetitions (Reps) of the bench press . 10 reps butterflies . 1 minute plank . 10 Dumb bell curls . 10 pull ups

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The Role of Playing Wheelchair Sports in Lewis’s Life

Playing wheelchair sports has had a profound effect on my life. I have had a disability since birth and unfortunately, I could not play conventional sports intended for the non-disabled. Ever since I could remember, I loved sports. I have always had a very competitive side and playing wheelchair sports has given me the chance to channel this. I play wheelchair basketball and wheelchair rugby.

Wheelchair basketball started 60 years ago when disabled veterans began returning home from World War II. Today, there are more than 200 basketball teams throughout the U.S. and Canada. Wheelchair basketball is the most popular wheelchair sport in North America. Playing wheelchair basketball has been a great way for me to meet other athletes and to make friends as I get to challenge my competitive side.

I started playing junior wheelchair basketball when I was 8 years old. I played for the Katie Kurlin’s Basketball Team of Philadelphia. This team is made up of children 6 to 16. We traveled throughout the United States competing against other teams. By playing basketball, I finally had the chance to feel normal. Up until I started playing wheelchair basketball, I was never really around other people in wheelchairs; this opportunity gave me the chance to see that I was not alone.

Today, I play wheelchair basketball and wheelchair rugby at a semi- professional level. I play basketball for the Philadelphia 76’er Wheelchair Basketball Team and I play rugby for the Philadelphia Eagles Wheelchair Rugby Team. Both teams travel extensively as they compete for the national title.

I am very fortunate; playing wheelchair sports has provided me with many opportunities that I might not have had otherwise. I have had the chance to meet many other athletes like myself and a lot of famous ones too. Wheelchair sports have given me the chance to make new friends and even enjoy some healthy competition. I have had the opportunity to travel to places that I might not have ever got the chance to see. It has provided me with a fun way of staying in shape on a regular basis. I am thankful that I have had the chance to play wheelchair sports.

TOOLKIT PYLN

Adapted Sports and Recreation

Sports and recreation are very important to learn about and participate in throughout life. They not only can assist in a healthy lifestyle, but they also assist in the development of coordination, reaction, build stamina, and overall increase physical fitness. Being disabled does not mean you cannot be a competitive, healthy person. There are several sports that are available for people with disabilities such as:

- Basketball – a team sport in which two teams of five players each try to score points by putting the ball through the hoop (10 feet tall). The game is played with organized rules and is one of the most popular wheelchair sports known worldwide. There are over two hundred teams for all genders, ages, and disabilities. Played by Manual Wheelchair Athletes o Resource Site: www.nwba.org

Basketball Wheelchair

- Goalball – is a team sport played by blind athletes. Developed in 1946 for rehabilitation purposes of visually impaired World War II veterans. The International Blind Sports Federation is the governing body for the sports Played by Visually Impaired Athletes

o Resource Sites: www.ibsa.es/ --- www.usaba.org

- Wheelchair Rugby (Murderball) – This is a full contact sport that is most often played on a volleyball court or basketball court. The game is played with a ball and points are scored by crossing the goal line with possession of the ball. The opposing team is defending that goal and the winner is

determined by the team with the most points when time runs out. Quad TOOLKIT PYLN

rugby is a sport for people with a disability in at least three limbs. It gives a chance to everyone with more severe disabilities to be competitive. Played by Athletes with some dysfunction in all four limbs

o Resource Sites: www.quadrugby.com --- www.iwrf.com

- Wheelchair tennis- this sport is played just like standup tennis with only one change is the rules; you may return the ball on the second bounce. It must bounce three times on the opponent’s side to score a point.

o Resource Sites: http://www.itftennis.com/wheelchair/

Tennis Chair

- Table tennis- is played just like normal table tennis except you will only compete against people with a similar disability.

o Resource Sites: http://www.midy.com/~usatt/parapong/

- Volleyball- it is played sitting down with a shorter net and smaller teams. The scoring is the same as regulation volleyball.

o Resource Sites: www.usavolleyball.org/

- Wheelchair softball- is played on any hard surface with fences of two

hundred feet and ten players on each team. The rules are the same as a slow pitch softball team.

o Resource Sites: http://www.wheelchairsoftball.org/index.htm PYLN TOOLKIT PYLN

- Ice Hockey – played as team sport on ice and is known across the world as a fast paced and very physical sport. Six players are on the ice at one time and one remains as the goalie to protect the goal. Scoring is done by placing the puck into the net of the opposing team. Played by Athletes with hearing impairments and physical disabilities

o Resource Sites: www.ahiha.org www.amateurpenguins.com/index.php?team_id=14398

- - Other resourceful sites available: o Wheelchair Softball - www.wheelchairsoftball.org/ o Wheelchair Track & Field - www.wsusa.org o Paralympics Information - www.paralympic.org o Deaf Ski & Snowboard Association - www.usdssa.org o Deaf Team Handball - www.usadth.org o United States Assoc. of Blind Athletes - www.usaba.org

Other Adapted Sports Equipment

Source: http://www.topendwheelchair.com

Hand cycles Racing Chair

TOOLKIT PYLN

Colleges

There are several colleges around the country that offer some sort of adapted sports and recreation for students with disabilities. Here are a few to help with the search:

 Edinboro University of PA – www.eup.edu  University of Illinois - www.disability.uiuc.edu/athletics  Southwest State Minnesota - www.smsumustangs.com  University of Arizona – www.drc.arizona.edu/athletics/index.html  White Water Wisconsin University  Wright State University – www.wright.edu/crec/programs/adaprec.html  Penn State University - www.athletics.psu.edu/ability

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HEALTH PRACTICES

Developed by youth for youth

1st Edition

July 2009 PYLN

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Talking to Doctors

Rachel on Doc Talk!

Everyone has to go to the doctor, but some types of disabilities mean you have to see doctors more often. For example, if you have a psychiatric disability you often have to check in with your psychiatrist, a doctor who deals with mental health issues, to make sure your medications are on track. If you have a physical disability, it is important to see your doctor or specialist, someone who is an expert on your disability, to make sure that you are healthy. Everyone should see a doctor at least once a year to get a checkup or physical and make sure you are running in tip top shape!

When you see your doctor, don’t just listen, speak up! It is important to talk to your doctor about what is going on in your life. Only you know how you really feel and can provide the best insight or look into what is going on and what you think will help. It can be intimidating or scary to talk to your doctor, but remember, your doctor’s job is to help YOU. So speak up! They might be the ―professional‖ but you are the expert on you.

It can be difficult to remember everything you want to ask or tell your doctor during a visit, so it is a good idea to keep a list of things you want to discuss. You can add to your list as you get more ideas. Below is an example of the list I bring to my psychiatrist:

1) I talk to my doctor about how I am feeling that day and how I have felt since my last visit – I have Bipolar Disorder (a mood disorder like Depression) which affects my mood. If I have been having a lot of mood swings, that can be a warning sign that things are not going well and I might need my medications adjusted or changed. Even if you do not have a diagnosed mental health disorder it is still important to share your feelings

with your doctor. Being honest with your doctor about how you’ve been

feeling is important because if you are depressed or have been experiencing

trouble they can help you. PYLN TOOLKIT PYLN

2) I talk to my doctor about my sleeping patterns and eating habits since my last visit. For example, with Bipolar Disorder you can experience increased energy and a need for less sleep and sometimes appetite changes. It is important to share this type of information with your doctor so they know if you are in a stable place or not. It is important for everyone to talk about odd appetite and sleep patterns because this can reflect different health problems.

3) I talk to my doctor about any stressors that may be coming up – Stressful life events can cause mood disorders to get worse and these events can also cause physical health problems if you do not manage them well. Talking to your doctor about stressful life events is important because your doctor can help you with coping techniques so you are better prepared to handle them. This way you avoid having emotional or physical problems as a result of stress.

4) I share personal facts with my doctor – It is important to build a relationship with your doctor so they really know you and can help you. I tell my doctor about my triumphs and struggles so we have a personal relationship. For example, I share with my doctor when I get good grades and when I have rough days. It helps my doctor get to know me and this leads to better care.

Think of some questions you might want to ask your Activity doctor! Having a parent or guardian help brainstorm possible questions or information to share can be really helpful too.

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Organization of Medical Information

The organization of medical information is necessary in order to maintain your health. It is important to keep all information, especially insurance cards, in one central place where you can retrieve it quickly. A folder or binder is a great place to store medical information. The folder can be divided up with tabs which can be purchased at an office supply store. The folder needs to be kept in a safe convenient place. Paper records should be kept in conjunction with online records. Any paperwork or documentation that you have must be kept for at least seven years.

The organization of medical information can be done at home or on the go. The items you should always carry with you in a wallet or purse include insurance cards, social security card, the names/numbers of doctors or clinics, and driver’s license or identification card. These items are necessary in an emergency or when you visit any health care facility.

If you’re organized, you will be able to find all information in an instant.

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First Aid and Medical Emergencies

Gillian on First Aid and Medical Emergencies

Going through my years of education at Edinboro University of Pennsylvania with an uncontrolled seizure disorder of epilepsy helped me create a personal story of what I went through and managed.

Before starting college, I had a meeting with many faculty members of the school including the Office for Students with Disabilities, the Personal Care Assistants, and some Deans about what assistance I needed and what would need to be done in certain situations when I had a seizure. As a result of the meetings, it was decided that I would stay in the dorms for students with disabilities who needed personal care assistance in their daily lives.

As it turned out, when I needed to be given an emergency medication the EMS was required to be called even though it was no emergency. It was because it was a controlled medication I needed to be given, and it was inserted rectally. It was then also required for me to go to the hospital if I was given the special medication by the EMS. Doing that the EMS was wasting taxes on ambulance calls.

Going through the next year, things started to change some. The campus security would be called during an emergency and would try to transport me over to the campus medical center for the registered nurses there to give me the special medication. Being registered nurses, I was then not required to go to the hospital if I was given it. That went well for a while but then no longer did because an officer almost ran over a student as he was transporting me to the medical center. Once that went on, things went back to the way they were before.

To solve things I had my doctor write letters, an attorney become involved, and someone from the epilepsy foundation be involved. The president of the EMS had to be talked to so he would understand things, and how taxes were just being wasted as well. That was pointed out to him. The school policy would not change,

so it was only the EMS who was permitted to give me the special medication. PYLN TOOLKIT PYLN

Things eventually were worked out in a good way. The EMS learned that after they gave me the special medication they only needed to stay with me until I was completely out of the seizure and did not need to take me to the hospital. I then eventually learned to talk with the EMS president in a fun and friendly way.

First Aid and Medical Emergencies

It is good to know how to handle a medical emergency that may occur, being a person with a disability. There are varieties of things that can help you be prepared.

Who Needs To Know

There are people you should give explanations to on what to do when you may have a medical emergency. You may also need to explain the times when you need it and when you do not so they do not get confused. I needed to do that so people understood what seizures of mine were considered ordinary and what were considered an emergency. The people you should make sure know what to do are:

- parents/siblings - friends - roommates - neighbors - teachers/professors

Make a Contact List

You should also make yourself a contact list of who to contact in case of an emergency and always carry it with you. Some people who could be on your contact list include ones given an explanation to. They could be:

- parents/siblings - friends

- roommates - neighbors

TOOLKIT PYLN

Women’s Sexual Health

Allsion on Sexual Health

Maintaining Confidentiality

Anything that you discuss with your doctor pertaining to your sexual health should remain completely confidential. Parents and family members cannot ask the doctor to divulge information that you don’t want them to know for whatever reason. Most doctors are respectful of this, but some might feel that because you have a disability, it gives them the right to discuss confidential information with other people. If you fear that this might happen to you, it is important to tell your doctor that you are capable of making your own decisions, and that you want to be treated with the same respect as others.

Basics of Obtaining Contraception

Although abstinence (not having sex) is the safest form of birth control, when you choose to be sexually active, there are various places to obtain contraception. You could get it from your Primary Care Physician or gynecologist. You could also go to an agency like Planned Parenthood (http://www.plannedparenthood.org/health-topics/birth-control) if you don’t have insurance or can’t afford co-pays.

Finding an Accessible Gynecologist

As a woman with a disability, it may be difficult to find gynecologists whose offices and medical equipment are accessible. Fortunately, there are hospitals and clinics which serve the needs of women with disabilities. The examination tables and equipment are specially designed to meet the needs of women with disabilities, and the staff is trained to accommodate different types of disabilities. Many hospitals and physicians can provide referral service to help you find an accessible facility in your location. You can always call various doctors and ask if their office

is accessible. PYLN TOOLKIT PYLN

Maintaining Medical Equipment

Maintenance of Medical Equipment

The first thing a person should understand is the difference between durable medical equipment and assistive technology. Durable medical equipment is any device, such as a wheelchair or scooter, which is medically necessary to perform daily activities. It is a classification typically used by Medicare.

Assistive technology is any technology that improves the daily functioning of a person with a disability. Assistive technology, such as screen reading software or environmental controls, utilizes technology that needs maintenance as well.

The maintenance of your medical equipment or assistive technology is just as important as the maintenance of a car.

Here are a few tips to keep your equipment or technology in working order:

 Clean the devices on a regular basis. Dust or dirt could affect the overall performance.  Make yearly appointments for general repair and preventative maintenance with supplier of devices.  Keep equipment or technology out of the rain if possible.  Budget money for future problems or upgrades.  Use the devices as the manufacturer intends. For instance, a wheelchair is not an all-terrain vehicle or boat.  Charge any rechargeable device on a regular basis.  Check to see if batteries in devices are working properly.  Fix minor problems before they get any worse.

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Center for Assistive Technology

Pennsylvania’s Initiative on Assistive Technology (PIAT) is a great source to find out about assistive technology (AT) and medical equipment. Their mission is to enhance the lives of people with disabilities through access of AT devices and services, which allow for choice, control and independence at home, work, school, and in their neighborhoods.

PIAT’s website is filled with great resources: http://disabilities.temple.edu/programs/assistive/piat/. Here are a few examples:

 Access to Assistive Technology (AT), or "How Do I Know What I Need?" o Device Demonstrations—A hands-on opportunity to learn more about different AT devices so individuals can make an informed choice about what will work best for them. For more information, email [email protected]. o Device Loans—Pennsylvanians of any age and ability can borrow AT devices, at no cost, to try at work, school, and home or in their neighborhoods. This short-term loan program has a "try before you buy" philosophy, and helps people with disabilities and their families make the right choice of AT devices before they obtain a device. For more information, email [email protected].

 Acquisition of Assistive Technology, or "How Do I Get What I Need?"— Device Reutilization and Recycling: Previously owned devices are an affordable option instead of buying new, and several options are available to Pennsylvanians, including classified listing of used devices (REEP), an online auction site (www.ATMATCH.com) and refurbishing programs (Into New Hands and Liberty Wheels). For more information, email [email protected].

In addition to these Access and Acquisition activities, PIAT also provides:

 Training—Outreach to service providers to increase their AT-related knowledge and skills to better support people with disabilities. For more information, email [email protected]. TOOLKIT PYLN

 Technical Assistance—Outreach to public and private agencies to develop and improve policies related to AT as well as transition from school to work or from nursing home to community living. For more information, email [email protected].

 Public Awareness Activities—Information and referral which educates consumers, via phone, email or letter, about their choices of AT devices and services; AT exhibits and presentations at conferences, group meetings, staff in-services, and other events; and Case Management to help consumers navigate the maze of funding options available to obtain needed AT. For more information, call 1- 800-204-9428 or email [email protected].

Center for Assistive Technology

The Center for Assistive Technology is a place that assists individuals with disabilities in obtaining appropriate assistive technology. It is a great resource for medical equipment and assistive technology. It is located in the Oakland section of Pittsburgh at the Forbes Tower. It is known as the CAT by many people. The CAT provides comprehensive services from technology consultation to adaptive driving evaluation and training. There are experts at the CAT who are caring and helpful. They provide either commercially available or customized assistive technology to improve the lives of persons with disabilities. The technology suppliers who work with the CAT have extensive knowledge regarding both simple and complex assistive technology. Here is the contact information for the Center for Assistive Technology:

UPMC Health System Forbes Tower, Suite 3010 200 Lothrop St.

Pittsburgh, PA 15213-2582

Voice: 412-647-1310 TDD: 412-647-1325 Fax: 412-647-1322

Website: http://www.cat.pitt.edu TOOLKIT PYLN

Working with Personal Care Assistants

Josie’s Views: Juggling having a Personal Care Attendant (PCA) and a personal life

I have had nurses for my entire life and have hired my own PCAs for the past six years. Although I love having PCAs and the freedom it has given me, it can be hard to maintain privacy or a private life. While having PCAs I have had to figure out how to manage friendships, dating, and personal problems.

One question I always struggle with is ―how can I have privacy when I have somebody with me 24 hours a day?‖ I cannot give you the perfect solutions, but I will try to give you a few tips that have helped me stay sane and continue to have a private life.

Personal Space and Alone Time

I have had to learn that it is ok to ask for alone time. For a few years, I felt that I needed to entertain my PCAs and keep them busy. This was draining and made me realize how much I needed alone time. Now, I try to set time aside everyday and on the weekends to be alone. When you have full time attendants, it is easy to lose ―alone time‖ and time to reflect. It is critical to make an effort to do this, even if it is only for 15 minutes a day. You may be able to use the following suggestions to help you manage having alone time

 Before going to sleep every night, spend some alone time reflecting, writing, reading, or listening to music. Do something that you enjoy doing and that can help you unwind.

 After school or work take a half hour nap. Sometimes it is helpful to not

talk to anyone for a bit of time after a stressful day.

 Set time aside to take a relaxing bath or shower. Even a 10 minute shower

can give you time to ―get away‖ and think. PYLN TOOLKIT PYLN

 Find a mode of art. Sometimes art can help you to explain your feelings and release your stress. This may be a great way to have alone time to reflect.

Friendships

Every person has different ways of interacting with their friends and PCAs. Sometimes it is hard to figure out where to have a care attendant go with you and how involved they should be in your friendships. It is OK to keep your PCAs and friendships separate. However, when I hire PCAs, I prefer to hire people that I know that I could form friendships with. In doing this, I am able to have an attendant and spend time with a friend. Don’t forget though, that these friends are still working for you and that you are paying them to help you.

Dating

Needing a care attendant and being in a dating relationship can be one of the most difficult situations to balance. On one hand, you do not want your significant other to be providing all of your care so it is nice to have a care attendant around. On the other hand it can be very awkward to have your PCA with you during intimate times. Here are a few suggestions that have worked for me:

 Have your PCA get everything set up and taken care of before your significant other arrives. This will help you to be as independent as possible without having your attendant with you.

 Have your attendant stay in a room near you but not in the same room. This will allow you to call them if you need them but also give you some privacy.

 Plan a double date with your boyfriend/girlfriend, PCA, and their

boyfriend/girlfriend. This will allow you to have an attendant but make it

seem less awkward. PYLN TOOLKIT PYLN

Important Definitions

Many helpers are health care professionals, and they usually have different skills depending on their training. This training will enable your helper to take on different responsibilities. These helpers each have different job titles to clarify their different job duties. There titles are often represented by acronyms. All those acronyms can be confusing and make you wonder ―what does that actually mean?‖

Here are a few common helpers and what their responsibilities entail:

RN: Registered Nurse  The RN role is mainly a supervisory position and requires two to four years of nursing school in order to obtain an Associate’s Degree. A RN provides direct care and also dispenses medication to individuals.

LPN: Licensed Professional Nurse  An LPN usually provides direct care to individuals while in a medical setting and has attended a vocational school to attain their title.

CNA: Certified Nurse’s Aides  A CNA works under the supervision of nurses, rehabilitation therapists, etc. and the certification for this position varies by state. Most CNAs work at home care agencies and aid persons with daily living activities.

PCA: Personal Care Attendant  A PCA provides direct care to individuals usually in the home care

setting and requires training or a certification.

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Directing One’s Own Helpers

People with disabilities may have personal care attendants (also known as personal attendants, aides, PCAs, or PAs) for various reasons. Personal Care Attendants can assist individuals with all types of disabilities and can provide various services. Some PCAs may help with cooking, shopping, cleaning, staying on task, navigation, and various other tasks. Many agencies help pay for personal care attendants, however, the client (person with the disability) should always be in charge of the care they are receiving from their PCA. Sometimes it is difficult to know how to direct your own care and lead an independent life.

Self-advocacy and self-determination are important in learning how to direct your care. You must be able to communicate your needs and wants with your PCA while also respecting the needs and feelings of your attendant.

To have a successful relationship with your PCA:

 Show respect- even though your PCA is there to support YOU, they are not your slave. Just like any person with any job, your PCA’s work with you is only one part of their life. S/he has a life too, and may not be able to work for you every time you need it. Make sure to have enough PCAs to cover all the shifts you might need and fill in when necessary.

 Communication is KEY- Even though your PCA may know you very well he or she is not psychic. We are all human, even your PCAs. There will be times that you will need to remind them of things that need to be done or explain to them what you want (or re-explain to them how to do something). You need to be able to tell them what you need and want and how that should be done. While you should not be afraid to be specific, you should also keep the previous point of RESPECT in mind.

 Building a Relationship with your PCA- Although the main purpose of having

a PCA is to provide for your care, friendships can also be formed within this relationship. For example, a PCA may help you with cleaning your apartment,

however, they may also go to a movie with you and your other friends. PYLN TOOLKIT PYLN

Just like no person is the same, no PCA-client relationship is the same. Some relationships are very open while others are more strict and business like. Every PCA is different and they will not do things in exactly the same way. Sometimes it can be difficult to get used to the style of each PCA but as long as they get the job done correctly, that is all that should matter.

You and Your Helper: Safety Comes First

Your comfort and safety should be the top priority when dealing with helpers! Because the role of a care attendant can be very intimate (helping the client change clothes, manage money, etc), you need to understand the importance of selecting staff who can work well with you. Not everybody is meant to be a PCA or nurse, and unfortunately most of us who need care attendants have hired at least one of these people.

There are cases in which care attendants have taken advantage of the client, including sexual abuse, theft (including identity), and many other criminal acts. Having a care attendant means that you need to know how to avoid hiring people who could put you in dangerous situations, and what to do if you do hire one.

Clearly communicate to your helper if he/she is not properly assisting you or if you feel unsafe at any moment. Give suggestions on what your helper can do to correctly give you the best care in order to remain safe, secure, and comfortable.

If problems do arise and your safety is jeopardized, TELL SOMEONE! Report any problems with your helper to other medical care professionals, nursing agencies, family members, etc. It is completely acceptable to report any wrongdoings because you need to be helped safely and appropriately.

How to avoid hiring a bad care attendant

 Create an application that asks:

o Past job experience and work experience. o Why they want the job.

o Address and phone number. TOOLKIT PYLN

o Personal and professional references.

 Do interviews:

o Take notes so you don’t forget who each person is. o See if another person (friend, family member, etc) can listen in to the interviews with you.

 Call references and current/former employers:

o Ask about their character, how they know the person o Ask employers about their attendance record, and would they hire them again.

What to do if you do hire a bad personal care attendant:

 If they are doing something illegal call the police- Dial 911

 Contact a disability service provider- if you get your attendants through an agency, call them immediately

 If you are hurt or have been raped go to the Emergency Room- Dial 911

 Call or email an advocate to help you talk to authorities- Pennsylvania Protection and Advocacy and Centers for Independent Living can help

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Activity Everyone’s Helper is Different

Worksheet: We each need different types of help and we each have our own definition of what a helper is! For some a helper can be their parent, for others it is a hired professional – different help comes from different people.

1. How would you define a helper?

2. What types of helpers do you have? What do they generally do for you?

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Now that you can identify some of the different roles of helpers, it is important for you to identify the assistance you need. Your helper can provide better care if you know what assistance is necessary.

Activity Creating a Checklist for Your Helper

Worksheet: There can be many duties your helper may need to provide, so it is extremely important to be organized and prepared.

1. What can your helper assist you with on a daily/weekly/etc. basis?

2. Create a checklist that you can have for reference and your helper can view as well. Be sure to include all of the activities you listed above so that you do not forget all of the necessary help you need.

3. Communicating to your helper how each item on the checklist should be done is very important. What is your personal routine or way of doing each item? Write

specific notes about each item in the space below.

TOOLKIT PYLN

Activity Safety is ALWAYS a Priority

Worksheet: You need to be aware of how to handle any problems that may arise with your helper.

1. What would you do if you felt unsafe with your helper?

2. Who would you contact if a problem existed with your helper? What would you say to whomever you contacted?

Think You Have the Hang of It?

Directing one’s helpers takes some effort, but mapping out what you need help with and being prepared for their assistance can make a huge difference in the entire experience. Speak up about how your helper can provide better care and keep the lines of communication open.

Your helper wants to be there for you in any way he/she can and make you feel comfortable, so remember that when directing your helpers. Always keep your safety as a priority, and therefore, you can feel safe while obtaining the assistance you need!

Communication is Key

In summary, make sure your helper knows your needs! Communication is helpful to both you and your helper to create a comfortable, positive environment. Keep in mind that every person has different needs and you should be direct in terms of expressing the best process for each activity. TOOLKIT PYLN

Sexual Assaul t/Pred ators

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PA Youth Leadership Network

Resources

What is the Pennsylvania Youth Leadership Network (PYLN)?

The PYLN is a team of youth leaders with disabilities from across Pennsylvania with a purpose to develop the self-determination, empowerment, and leadership of youth that promotes successful post school outcomes in the areas of education, employment, independent living, and health and wellness among youth and young adults throughout Pennsylvania.

Goals of the PYLN Developed BY • Provide a youth voice at the table on important boards and committees Youth FOR Youth! that impact the lives of youth with disabilities.  Pennsylvania Youth Leadership Network • Recruit and match mentors who are Secondary Transition Toolkit

young adults with high school youth • Youth driven, youth written tool for youth to help them prepare for their future • 110 page guide and workbook for the transition success. process • Develop and share transition, self- • Accessible determination, self-advocacy, and • Divided into three phases empowerment resources geared – Phase One : ACCEPT YOURSELF! toward youth in high school. – Phase Two: DECLARE YOURSELF! • Ensure unbiased policies, practices – Phase Three: EMPOWER YOURSELF!

and attitudes that affect individuals  PYLN Health Care Toolkit with disabilities As a follow up to the 2008 Pennsylvania Youth Leadership Network’s (PYLN) Secondary The PYLN Wants to Connect Transition Toolkit the PYLN, with funding support from a Heinz Endowment Youth-Philanthropy with YOU! grant, has created the PYLN Health Care Toolkit.

With a focus on living a fulfilled healthy life, The • Connect to the PYLN by visiting our PYLN Health Care Toolkit is designed to further website: http://payouthleaders.ning.com assist youth in their transition into the adult world. The best thing about the toolkit is that it was • This URL address will connect you to written and designed by youth with disabilities informational videos, materials and who are members of the Pennsylvania Youth updates regarding the PYLN. Leadership Network (PYLN) for youth. It can also be used with families and professionals as a youth-friendly resource for transition.

Pennsylvania Youth Leadership Network Secondary Transition Toolkit

Developed by youth for youth

1st Edition July 2008 PYLN Welcome to the Toolkit!

Dear Youth, Families, and Professionals,

The Pennsylvania Youth Leadership Network (PYLN) has created secondary transition toolkit to assist youth in their transition into the adult world. The best thing about the toolkit is that it was written and designed by youth with disabilities who are members of the Pennsylvania Youth Leadership Network (PYLN) for youth. It can also be used with families and professionals as a youth-friendly Toolkit for transition.

Within the Toolkit there are three phases: Phase One: Accept Yourself!

Phase Two: Declare Yourself!

Phase Three: Empower Yourself!

Each phase is filled with PYLN members’ transition stories, along with information and activities to help you take charge of your life!

This is our first attempt at the Toolkit and we plan to keep changing it and adding information to meet your needs. If you have any ideas to share, please email the PYLN at [email protected] .

Since we plan to continually update the Toolkit, you can find the latest version online. It’s as simple as going to this website: www.sharedwork.org/patransition. You do have to register to use the site, remember to write down your user name and password since you’ll need it next time you visit the site. On the left side of the Pennsylvania Community on Transition homepage, please click on the PYLN Secondary Transition Toolkit.

Thanks,

PA Youth Leadership Network Member What’s in the toolkit?

PA Youth Leadership Network: Who We Are ...... 7

Phase One ACCEPT YOURSELF! ...... 15 PYLN personal story - Allison’s story ...... 16 PYLN personal story – Lewis’s story ...... 17 PYLN personal story – Kelly’s story ...... 18

So you have a disability ...... 20  Definition of disabilities  Things to never forget  Getting to know yourself

Help is out there ...... 23  Understanding your accommodations and supports  Your health is important!  Who to talk to about your disability – working with trusted adults  Learning about your disability

Sometimes you feel like you just don’t fit in ...... 26  Using the problem solving method  Common problems in social situations  Social issues: 10 samples questions and answers

It’s all about you! Tips to get the most out of assessments ...... 32  PYLN personal stories o Everett’s story o Joe’s story  What is assessment and why should you care?  What assessment accommodations can you get?  What are the different types of assessment  What to expect from formal assessments  Lifelong career journey  Understanding your strengths and talents What’s in the toolkit?

 Understanding your weaknesses – learning about the supports that can help  Knowing your interests – helping you plan for the future  Celebrating your strengths  Pulling it all together!

In summary ...... 58  Reality check and review questions

Phase Two DECLARE YOURSELF! ...... 62 PYLN personal story – Joe’s story ...... 63 PYLN personal story – Collan’s story ...... 64

Speak up for yourself ...... 65  What is advocacy and how do you advocate for yourself?  The four keys to being a good self advocate  Healthcare advocacy  Self advocacy DO’s and DON’Ts

Help in school: The IEP and the secondary transition process . 69  What is IDEA?  What is an IEP?  What is transition planning in the IEP?  How do I set post-school goals?  What can be scary about your IEP?  How you can participate in your IEP.  Getting involved in my IEP.  How to participate in my IEP.  How to make sure my IEP is going as planned.

Checklist for preparing for successful post school outcomes...... 81

What’s in the toolkit?

In summary ...... 95  Reality check and review questions

Phase Three EMPOWER YOURSELF! ...... 97

PYLN personal story – Everett’s story ...... 98 PYLN personal story – Rachel’s story ...... 100

Empowerment ...... 102  What is empowerment?  Why is empowerment important?

Help is out there ...... 103  Drawing the line (between support and control)

Ensuring you are headed in the right direction ...... 104  Tips for getting services

Becoming empowered ...... 106  How to get empowered  Activity: What can these youth do to empower themselves?

PYLN personal story – Josie’s story ...... 110 PYLN personal story – Mike’s story ...... 111

In summary ...... 112  Review questions and reality check

Thank You! ...... 115 6

PA Youth Leadership Network: Who We Are

Developed by youth for youth

1st Edition July 2008 PYLN What is the Pennsylvania Youth Leadership Network (PYLN)?

Since 2005 the goals of the PYLN have been:

1) Collectively work and collaborate with a variety of groups to ensure a successful transition of youth with disabilities 2) Establish and maintain a mentoring coalition between youth with disabilities and young adults who have accomplished successful transitions. 3) Develop, distribute and implement self-determination/ empowerment resources for use in educational programs. 4) Develop a youth friendly disability resource guide/template that highlights basic definitions, general information regarding transition services, and resources at the state and local levels. 5) Ensure equitable policies, practices, and attitudes that affect individuals with disabilities.

To achieve these goals the Pennsylvania Youth Leadership Network has completed multiple activities, trainings, and documents throughout the past few years. Some of these have included: creating and managing all training and activities for youth at the following events: three Pennsylvania Statewide Transition Conferences, the Youth Outcome Expo, Temple University Institute on Disability C2P2 program, and the PA Statewide Independent Living Council’s conference. We’ve also collaborated with other states to expand youth development and youth leadership efforts across the country.

PYLN TOOLKIT 8

Meet the PYLN members who contributed to the Toolkit

Josie Badger

Age- 24

Disability- Muscular Dystrophy

Location- Wampum, PA/Pittsburgh, PA

Activities- Josie Badger is attending graduate school for rehabilitation counseling at the University of Pittsburgh. In May of 2007 she graduated summa cum laude from Geneva College, in Pennsylvania, majoring in Disability Law and Advocacy. On the state level, Josie is a founding member and youth coordinator of the Pennsylvania Youth Leadership Network. She is working with the Center for Disease Control and Prevention on a book addressing youth with disabilities transitioning out of high school. Josie is a member of the Governor’s Council for People with Disabilities. She also consults with Children’s Hospital of Pittsburgh and the Pennsylvania Training and Technical Assistance Network.

Everett Deibler

Age- 24

Disability- Cerebral Palsy

Location- Lebanon, PA

Activities- Everett has been very involved in the disability community for most of his life. One of his major activities is wheelchair sports. From 2001 through 2003, Everett was team captain for his junior wheelchair basketball team in Philadelphia. He received a varsity sport letter at Edinboro University in 2004. He was also a member of the 2006 National Champion United States Quad Rugby team. Beyond sports, Everett has been active in disability leadership. He was a planner and key presenter at the PA Statewide Independent Living Council’s Youth Conference and at Temple University’s Institute on Disability C2P2. He is also a committee chair for the National Youth Leadership Network’s Public Outreach committee.

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Paul Fogle

Age- 24

Disability- Congenital Central-Hypoventilation Syndrome

Location- Oley, PA

Activities- Paul is involved with many activities at his school, Penn State Harrisburg, including College Republicans, Student Government Association, and Faculty Senate. At the state level, Paul is a member of the Pennsylvania Youth Leadership Network Governing Board, Pennsylvania Statewide Independent Living Council, and Children with Special Healthcare Needs Stakeholder Group.

Jeff Hladio

Age- 26

Disability- Cerebral Palsy

Location- Peters Township, PA

Joe Kleppick

Age- 22

Disability- Aspergers Syndrome, Attention Deficit Disorder

Location- Pittsburgh, PA

Activities- Joe serves on many different boards in the Greenfield area of Pittsburgh. He is also involved with many different political campaigns and boards. He currently works at Wal-Mart. He has been an active member of the Pennsylvania Youth Leadership Network since 2006.

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Tammy Klinger

Age- 27

Disability- Learning disability (dyslexia), Social Anxiety disorder

Location- Kennett Square, PA

Activities- Tammy graduated from Marywood University in May 2005 with a Bachelor’s degree in Special Education. She now teaches for the Upper Darby School District as a full-time building substitute. Tammy enjoys the outdoors and looks forward to going kayaking as often as possible.

Rachel Reimert

Age- 18

Disability- Learning Disabilities

Location- Kempton, PA

Activities- Rachel is new to the PYLN Governing Board this year. In addition to being involved with the PYLN Rachael has been involved in chorus at school, Credo, and drama club. She was a back stage helper/manager of a school play. She has received the ―X‖ Award, Aspiring Student Award, and has been a peer tutor, and a High Honor Roll student.

Collan Baker

Age- 18

Disability- Aspergers Syndrome and Attention Deficit Disorder

Location- Bear Lake, PA

Activities- Collan has been involved in high school track for the past 5 years, lettering twice. He has also been actively involved in chorus. He has been a junior counselor at the Gertrude Barber Institute and has been a volunteer at Head Start. He has received the Temple Grandin Award for his work and accomplishments. For the past two summers he has worked for Alleghany Coupling in Warren County.

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Crystal Davis Age- 19

Disability- Bipolar Type I Disorder, Generalized Anxiety Disorder, Attention Deficit Disorder

Location- Yardley, PA

Activities- Crystal is currently involved in an apprenticeship program through which she is learning to train assistance dogs for individuals with physical and/or psychiatric disabilities.

Kelly Lauth

Age- 23

Disability- Generalized Anxiety Disorder, Panic Disorder, Attention Deficit Disorder

Location- Pittsburgh, PA

Activities- Kelly graduated magna cum laude from Geneva College in May, 2007 with a degree in Communications and Theater, and a minor in music. She has won numerous awards for her dedication to the performing arts, such as winning the Junior Miss scholarship program for her county in 2003. She is a member of Alpha Psi Omega, an exclusive theater fraternity, and the International Thespian Society. She is a member of the band The Manifolds, alongside her husband and brother in law, and has recently recorded a new album, on which she sings and plays guitar, piano, and drums.

Allison Mervis

Age- 23

Disability- Blindness

Location- Munhall, PA

Activities- Allison received a presidential merit scholarship and voice scholarship throughout her undergraduate education at Chatham University. In the summer of 2005, she volunteered in the access technology center at Blind and Vision Rehabilitation Services of Pittsburgh. She is currently pursuing her master’s in rehabilitation counseling at the University of Pittsburgh.

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Lewis Hall Age- 18

Disability- Cerebral Palsy

Location- Honeybrook, PA

Activities- Lewis has been involved in wheelchair sports for several years. He plays wheelchair basketball and wheelchair rugby. He has competed in the Devon Horse Show for twelve years and has won numerous awards. He also holds a green belt in Ti-Kwon-Do.

Alexa Brill

Age- 18

Disability- Cerebral Palsy

Location- Mechanicsburg, PA

Activities- Alexa was involved in ice hockey for 4 years. She served as the team’s statistician. She will be attending Edinboro University in the fall as a Freshman. In her free time she likes to create canvas paintings. Alexa is a new member to the PYLN governing board.

Mike Matthews

Age- 27

Disability- Cerebral Palsy

Location- Washington, PA

Activities- Mike is a youth pastor and is actively involved in his church. He also lends his talents to Tri-county Patriots for Independent Living’s (TRIPIL), a center for independent living, and has been part of their efforts to get 100% of Washington county’s polling places accessible. This year he will lead TRIPIL’s youth group.

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PYLN Adult Allies

Adult allies support the work of the PYLN and follow the leadership and vision of its members.

Michael Stoehr Title- Educational Consultant Employer- The Pennsylvania Training and Technical Assistance Network (PATTaN) Location- Pittsburgh, PA

Joan Kester Title- Human Resource Development Specialist Employer- The George Washington University, Mid-Atlantic Rehabilitation Continuing Education Program Location- Mount Joy, PA (Lancaster)

Linda Loar Title- Parent Advocate Employer- Parent Education Network Location- Pittsburgh, PA

Marty Kester Title- Disability Advocate Employer- Retired Bureau Director, PA Office of Vocational Rehabilitation Location- Mount Joy, PA (Lancaster)

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Phase One: ACCEPT YOURSELF!

Developed by youth for youth

1st Edition July 2008 PYLN

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PYLN personal stories

Accepting my disability: Allison’s story

I have to admit, I’ve However, my vision and mobility never really had much instructors also played a major role in trouble accepting my helping me to succeed. They encouraged disability. I was born me to learn everything I could, and not three months premature, to settle for less because of my and as a result, I am disability. I learned from a young age totally blind. However, my family and that the ability to travel independently friends never treated me differently would lead to greater overall because of my disability. From my independence. I was also encouraged to earliest memories, I was just an ordinary participate in my IEP, believing that my kid, allowed to play, run, and fall just like future was my own, and that it was anyone else. I was always encouraged to important for me to work with others do well in school, and learned to read and and advocate for myself in order to write Braille very quickly. I always ensure that my individual goals were met. managed to keep up with my sighted Through the constant support of classmates, and therefore, I never felt friends, family, and teachers, I had an different or singled out. I was teased by easy time accepting my disability. Being some of my peers who didn’t understand involved in every aspect of my future my blindness or my capabilities, but no plans has made me more confident and more so than the other kids. aware of myself as a person with a My family has a lot to do with my disability. My greatest wish is to help acceptance of my disability because they others accept their disabilities through always treated me normally and gave me my example. the same responsibilities as my siblings.

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Accepting my Disability: Lewis’s Story

I was born three months great people and I have traveled all over early, weighing in at two the United States playing wheelchair pounds. Being born sports. premature, I acquired I play wheelchair basketball and the disability that is wheelchair rugby. Playing sports has called Cerebral Palsy, which is a given me the opportunity to accept my disability that affects the use of my disability and compete on an equal legs and arms. I use a wheelchair to playing field. I like playing on a team move around. Living with cerebral palsy with other people that are similar to my has been a struggle at times but I have self. My rugby team has even won a learned how to live with it. I have national title. My Basketball team has gained far more then I have lost by also had the chance compete for a having Cerebral Palsy. Having a physical national championship. Playing sports has disability is not the end of the world. I allowed me to learn about and accept my have had the opportunity to meet many disability.

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Accepting My disability: Kelly’s story

For much of my life, my and later with Anxiety Disorder, I've invisible disability was strived to never make excuses for my invisible to even me. disability. I've accepted it, and request Nowadays, a diagnosis others to do the same. I have learned to for Attention Deficit not only "cope" with having ADD, but to Disorder (ADD) is almost embrace it and succeed in learning, commonplace, but when I was in despite my disability. On the surface I elementary school, it was practically may appear to be absent minded, but to unheard of in my small hometown. As I search a little deeper is to realize a recall my childhood education from the mind that is awake and devoted to the perspective of being an adult, I can art and philosophy and math and music remember the numerous times that I and all of the things that I plan on felt slow and un-intelligent. It wasn’t continuing to learn about for the rest of until high school that I finally was given my life. A person that seeks to gain as a test that measured my I.Q. My score much knowledge and wisdom as possible was quite high, but my "Processing in her lifetime sure sounds different Speed" was lower. It finally made sense from a little girl who can't finish a math to me: I understood the information quiz by the end of class. Now, how's that my brain was processing, just at a that for a Learning Disability? different pace. With this new Nowadays, my disabilities are so breakthrough, I no longer felt the normal to me. I am actually surprised embarrassment and guilt that can when someone points it out. Living as an accompany situations like asking a adult with a disability is no easier than teacher for additional time on a test, or doing so as a student—I still struggle to asking someone to repeat what they have pay attention and suffer the occasional just said. With the accommodation of panic attack—but experience has taught understanding and patience from my me that I am capable of accommodating teachers, I excelled at school, even my shortcomings and achieving my goals. earning the Honor Roll throughout high Graduating from college with honors was school and the Deans List in college. an example of a recent goal realized. Ever since I was diagnosed with ADD, Being a person with a disability has given

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me the strength, perspective, and blessing of my disability, because it character it takes to overcome the makes me stronger each day. These obstacles that may block my life’s path, days, things keep getting better. I am and be the person I strive to be. You happy to have recently married someone may interpret this feeling I have who knows and accepts me with as much towards my disability as pride, and you ease as I’ve learned to accept myself. would be correct. I’m thankful for the

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So you have a disability

Definition of disability

The Pennsylvania Youth Leadership Network (PYLN) accepts the Integrative Model of Disability. People with disabilities may have some limitation or illness that may not allow them to fully participate in certain areas of daily living (such as problems with walking, writing, reading, or anxiety.) However, many of the barriers that people with disabilities face are due to the inaccessible environments and negative beliefs that exist about people with disabilities.

You might have heard the saying that no two snowflakes are alike. The same thing can be said about a person with a disability. People with disabilities have many different characteristics. Each person may need different accommodations (or help), even if they have the same disability.

Most disabilities fall into one of five groups:

1. Physical Disability: People with this type of disability may have difficulties with moving or mobility. They may use assisted devices such as wheelchairs or walkers. Example: Muscular Dystrophy

2. Sensory Disability: People with this type of disability may have difficulty hearing or seeing, or both. Individuals with visual impairments may use Braille, canes, or large print to assist them. People who are hard of hearing or deaf may use hearing aids or cochlear implants and/or use sign language. Example: Deaf or Blind

3. Cognitive Disability: People with this type of disability may have difficulty learning, communicating, and remembering information. They may also have trouble with problem-solving, paying attention, or understanding reading, math, or visual information. They may use daily planners, more time on tests, or quiet areas to study. Example: Down Syndrome

4. Psychiatric and Emotional Disability: People with these types of disabilities may have difficulty with emotions, feelings, and behaviors. Often these individuals

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are diagnosed with Depressive Disorder, Anxiety Disorder, Psychotic Disorder, and/or Mood Disorder. People with this type of disability may use medications, coping skills, or counseling. Example: Manic Depression and/or Anxiety Disorder

5. Health-Related Disability: People with this type of disability might have a physical condition that affects their overall health. They may have limited strength, vitality, or alertness due to chronic or acute health problems such as a heart condition, rheumatic fever, asthma, hemophilia, and leukemia. Things to never forget

Your disability is not a bad thing!

Your disability is a part of you but it does not define who you are as a person. You need to fully understand what your disability means to you and how it affects your life. If you let it get you down, you will never be able to make your dreams come true.

Everyone has things they are good and bad at in life. Everyone has strengths and weaknesses. Everyone has things they are good at and things that they are not so good at. It is important to understand what you are good at, and what you aren’t good at so that you can do things that allow your talents to show. Find out what you are really good at and like to do and go for it! Keep a positive attitude!

There are going to be times in life that you get frustrated with your disability. It is important to know that this is a part of life, and with a little patience you will find the light at the end of the tunnel. Do not let your disability get in the way of the dreams that you have set for yourself. Guess what… you have a disability

Part of accepting yourself means knowing that you have a disability and understanding what it means to you in your life! The next worksheet will help you to understand what your disability is and will give you helpful tips to get to know your disability... Many people with disabilities notice that they have barriers they need to overcome unlike their friends without disabilities. Knowing that you are different can make you uncomfortable about yourself, and possibly get in the way of your success.

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Getting to know yourself

Activity Worksheet: Questions to help you get to know yourself and your disability

The PYLN knows how important it is to accept your disability and understand how it impacts your life. Answering these questions should help you get a better understanding of yourself and the role your disability plays in your life and future.

1. What is your disability?

2. Describe what barriers your disability presents to you.

3. Describe your strengths

4. What are your weaknesses?

5. How do you learn best? (Do you learn by seeing, hearing, or actually doing something?)

6. What kind of help do you get at school so that you can do your best?

7. What kind of things do you think you still need to improve on? (examples: time management and organization)

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Help is out there

Understanding your accommodations and supports

Accommodations are so important!

You may be asking yourself ―what are accommodations‖? Hopefully this will help you understand what they are and how they help you.

The definition of accommodations is: Supports that help you succeed at a given task. Schools and colleges are required to give you the accommodations you need while in school. It is important to know what accommodations you are getting now so that you can ask for them and succeed in the future. As an adult, you are expected to know what you need and what your accommodations are; people are not going to be able to read your mind

Some examples of accommodations are:

 Extended time to finish tests  Wheelchair Ramps  Braille Menu at a restaurant  Assistance in reading a book or a test  Books on tape  Large print handouts  TV monitor connected to microscope to enlarge images  Class assignments made available in electronic format  "Real-time" captioning  Audio-taped class sessions  Computer with voice output,  Computer with spellchecker and grammar checker  Adjustable tables; lab equipment located within reach  Reasonable adjustments with attendance policy

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Worksheet: What are some of the accommodations Activity you get to help you succeed in school? How do they help you?

Note: If you do not know what accommodations you receive, ask your teacher or ask to read your IEP or 504 plan. That way you know what accommodations you have and are eligible to use.

Your health is important! Once you turn 18 you are considered an adult by your doctors. You need to be knowledgeable about what your medical needs are:  Know how to explain your disability  Know what medications you take, how much to take, and when to take them  Know your medical history

Who to talk to about your disability – working with trusted adults

Becoming aware that you have a disability can be scary. However, you do not want to ignore the fact that you have a disability. Naturally you are going to have questions about what your disability is, and what it means for your life. This next worksheet lists people you can talk to so that you can gain more knowledge about what your disability is.

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Activity Worksheet: Learning about your disability People you should ask about your disability:  Family (Parents or Guardian)  Teachers or counselors you trust  Your Doctor  Search the Internet  Go to the library

Questions you can ask these people:

1) What is the name of my disability?

2) What does it mean?

3) How does it affect me?

4) What supports or accommodations do I get to help me?

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So now that you know that you have a disability and what it consists of, you can begin to explain it to others. It may be awkward to tell people at first about your disability, but understand that you do not need to tell everyone right away.

People you should educate about your disability:

 Parents and Extended Family (If they don’t already know)

 Close friends or girlfriend or boyfriend

 Teachers

 Employers (in some cases)

 Colleges, universities and other training programs

It is important to know how to explain your disability because you are going to need to do throughout your adult life. It is a part of you but not all of you!

Sometimes you feel like you just don’t fit in

Using the problem solving method

So you think you have a problem? What do you do to solve it? Here is a list of steps to follow to help solve your problem.

1) Determine the problem- Is there a problem? 2) Define the problem- What is the problem? 3) Generate options- What could I do to solve this problem? 4) Evaluate the options- Out of all of the options, which is the best? 5) Make a plan- Now that I have an option, what is a plan to carry it out? 6) Try it out- Now, put your plan into action. 7) Evaluate and restart- Did my actions work? Did the problem go away? Is it still there? If it is still there restart the problem solving method and choose another option to try.

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Activity WORKSHEET: Problem solving methods

Use this worksheet to help you solve problems you may have. It’s okay to ask people you trust to help you learn this skill. You can use it for the rest of your life!

1) Is there a problem?

2) What is my problem?

3) What could I do to solve this problem?

4) Out of all my options to solve the problem, which is the best?

5) Now that I’ve decided on how to solve my problem, how do I make it happen?

6) Take steps and action to carry out my plan.

7) Is my plan working, did my problem go away? If not, restart this process and try another way.

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Common problems in social situations Always make an effort to be social, because friends and family can support you through a lot of good and hard times in your life! Attitudes of others and other factors which may inhibit your social Life:

o Fear o Ignorance o Pity o Hate o Lower expectations o Superiority o Charity

In summary, people may focus more on your disability then your abilities! Things that may affect your social interactions:

o Inferiority o Self- Pity o Lack of self confidence or advocacy o Fear o Lack of knowledge or awareness o Lack of encouragement to get involved o Other factors that affect your social life: o Lack of transportation o Lack of a good support network at home

Remember, there are many accommodations that can help you live your life:  Wheelchair use--ramps, elevators  hearing impairments—interpreters, close captioning  Visual impairments—Braille, taped, or electronic copies of written information which can be read by screen readers  Written communication—voice activated systems, computers  Transportation—accessible vehicles, ACCESS  Aids like service dogs and personal care attendants

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Worksheet: Social issues: 10 sample questions Activity and answers

To help you work through social issues you may experience, here are a few examples for you to think about and answer. It might be helpful to use your problem solving skills. In the blanks at the end of samples, list any social issues you may have and think about how you can solve them. We’ll start with an example:

Q: I love to meet new people, but I have Social Anxiety Disorder and get extremely nervous in large groups. How do I find a way to meet new people but also avoid these crowds?

A: A good way to meet new people is finding a common interest group to get involved in. While social gatherings at school can be congested, an independent group may be much smaller and more relaxed. An additional bonus is that these people have the same interests as you, so it will be easy to strike up a conversation and make new friends! Whether your interests involve things like art or sports, or even church or volunteering in your community, there are usually several clubs and organizations to become a part of, without the hassle of large crowds.

Q: I just received an awesome new laptop for my birthday! It's perfect, except that I can't use it! I have a visual disability and do not have the software necessary to use it. Where do I find this software, so that I can connect with all of my online friends?

Q: My friend invited me to his birthday party at his house in a week. I'd love to go, but my family and none of my friends are able to drive me. I am not able to drive myself because of my physical disability. How can I still see my friend when I have no way to get to his house?

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Q: My best friend and I have a common love: movies. We love watching all of the newest films that come out. But one of my friend's favorite things to do is to go out to the movies and see the newest releases. I usually use closed captioning because of my hearing impairment, but in the movie theater, there seems to be no such thing! Are there any resources for me?

Q: I have lots of friends and love hanging out with them at lunch. The only problem is that, at the next table a couple of boys are always laughing and making fun of me for having Down's syndrome. I usually just tell them to shut up, but this doesn't usually work and I just go and sit at another table. I know that I should be able to sit wherever I want at lunch, so how do I deal with these boys?

Q: I have muscular dystrophy, a physical disability requiring the use of a wheelchair, and have wanted to visit a coffee shop that many of my friends go to, but I am unable to because of a small set of stairs which lead to its door. How can I join my friends at this location?

Q: I made the school play! I am so excited because I love theater and I am a very talented actor, but being in a play also requires something that is not very easy for me: memorizing lines. The director just told the cast that we are on a tight schedule for practices, and that we must have all of our lines memorized in 3 weeks! Because of my learning disability, Dyslexia, it is very difficult for me to memorize my lines, and I have a lot of them. I'm nervous to talk to the director about this, because I'm afraid he will cut me, and theater is my absolute favorite thing. How do I talk to him about my issues?

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Q: I am a guy who loves sports. My friends and I always watch rugby, and love talking about it. A couple of my friends tried out for our school's team, and made it! I am really happy for them, but I have always wanted to play sports myself, and cannot make the school's team because my Cerebral Palsy requires me to use a wheelchair. Are there any opportunities for a guy like me?

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It’s all about you! Tips to get the most out of assessments

Assessment: Everett’s Story

I wish I would have that these assessments were pointless. known about how This led me to have a negative attitude assessments work and towards high school and I thought of what I could have done dropping out. I only was excited about to improve my graduating when I realized that college experience during the assessment was an option for me. process that took place over my entire When in high school, I had to take education. standardized tests like the PSSA and In kindergarten, I transferred schools. SAT. I became increasingly frustrated In order to be enrolled in regular with the limited time I had to complete education classes, I had to take an IQ the tests. I wish that I had known test. I took the test and got a score of about the accommodations that could 114 and people felt that it could not be have been available to someone like me. true because I had a disability. So I had I believe that it would have improved my to take the test again and the results scores and taken away some of my came back virtually the same. I was worries about taking such scary tests. then enrolled in regular education Now that I am in college, I have classrooms, which opened many made a decision about what my career is opportunities for me. I realize that going to be. I would like to be a high people made assumptions about my school teacher in the hopes of exposing intelligence, just because I walked students to the abilities of other young funny. people with disabilities and helping them I started taking career learn to accept differences just by assessments in high school to help me being around me as their teacher. find a career path. However, most of When exploring a career, I first the assessments that I did suggested thought I wanted to be a Dr. Phil type jobs that I knew were not accessible to (psychiatrist), because I liked helping my people that use wheelchairs. This was friends with their relationships and very disheartening to me because I felt social issues. So I went into college as a

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psychology major and realized that all it Leadership Network, I have been did was make me worry about myself and exposed to many education professionals my own mental health. And after all this and realized that I am cut out of the thinking, I realized that life was passing same mold as many of them, and share me by and I wanted to find something the same passions. Through my that truly lit a fire in my heart. volunteer work with PYLN I get a rush from working with youth and seeing the Sometimes assessment happens impact I can have on their lives. I would through relationships with adult mentors love to do this every day, as a teacher, and volunteer experiences. Through my when I finish college. experience with the PA Youth

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Assessment: Joe’s Story

When I was in first assistant. I didn’t want to do any of grade, I was put through these jobs. I felt that I needed to go a bunch of assessments find my own job and forgot about the because of attention assessment. This is an example of how deficit and hyperactivity assessment should not go, because it is disorder. I didn’t really to help generate options, not limit them. understand what was going on because I I have learned a lot about myself was so young, but my parents thought through my volunteer experience with that these tests would be beneficial to the Greenfield Organization. I worked me. on numerous agency projects such as I was sent for testing in 11th and putting together a newsletter, doing set- 12th grade when I got connected with up for fundraising events, and helping to the Office of Vocational Rehabilitation. raise money. This experience showed me I went to a psychologist and went how to work with people and becoming a through a tough, three-hour assessment. leader. Through feedback, I learned I was very agitated because I had just that I have a very good personality and finished school that day and had to go to am a person who is happy when I am work after the test. When I told the helping people. psychologist that I wanted to be a public Through my volunteer experience official, he said it wouldn’t be a good with the PA Youth Leadership Network, choice because you have to go to college it showed me a lot about being a and he didn’t think that was an option disability advocate and how to advocate for me. This made me feel that I wasn’t for people who do not have a voice. Now going to amount to anything and I felt I volunteer much of my time helping that I was going to be someone with a advocate for people with disabilities. I disability, letting life pass me by. When learned that someone with a disability is the report came back I met with the to be in charge of their own life, not psychologist and the jobs that came just to be told what to do. back were janitor, cook and nursing

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What is assessment? Why should you care?

Assessment is all about learning about what you can do in life. It’s a process that you go through to try to map out your future. Assessment is a very important part of your transition plan because it helps you:

 get concrete ideas about what you want to do  plan your next steps are  learn about yourself  challenges you to think about yourself  understand your interests  know your strengths  learn about your needs and accommodations that might help  plan for your future goals.

What assessment accommodations can you get?

Accommodations are changes to a classroom or work site that enables you to learn, work and show off your skills. Sometimes you need to ask for accommodations on assessments when you feel it will help you do your best. Accommodations can be things like asking for extra time on a test, using a calculator, having a reader or a note taker or having an accessible work area. There are usually rules about how to get accommodations and you need to find out what they are.

What is the difference between formal and informal assessments?

There are two ways of doing assessment - formal and informal. Formal assessments are tests that are scored and help you understand where you stand compared to others. Informal assessments can be done by a variety of people like your teacher, counselor, family member, your boss or yourself. Information can be collected through a survey, someone watching you, or having you experience work in different settings (school, volunteer, paid work). You can learn a lot about yourself by trying a lot of different things in different places.

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What can you expect from a formal assessment?

Formal assessments are where you take a test; it’s not just to get you out of class for the day. Sometimes when you are scheduled to take a formal assessment, you will be taking more than one test at a time. Whenever you participate in an assessment, it is important to understand why you’re doing it and what it can do for you. Before you take it, ask the following questions:

1) What is this for? 2) How can it help me? 3) What is the test like? 4) How long will the test take? 5) Am I allowed accommodations? 6) How will I learn about the results of the test?

When you are scheduled for the assessment, make sure you have had a good night’s sleep and a good meal. Make sure you know how long you’ll be there, how you’re going to get there and what accommodations you are going to be given. During the test, it is important for you to ask questions if you do not understand something. Within a few weeks after the formal assessment you should meet with someone you trust to review the results of the assessment. This information is to help you understand your strengths and needs and to come up with ideas to be used in your IEP and post school goals.

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What are the different types of assessments?

Transition assessment looks at your whole life. Career assessment helps you plan for your career throughout your lifetime. Vocational assessment and evaluation help you understand yourself as a worker. This chart shows the relationship between the different types of assessment:

What is transition assessment?

Transition assessment looks at every part of your life by seeing you as a student, a worker, a friend, a family member and a person who lives in a neighborhood. It helps you look at what supports you may need to reach your goals in life. It helps you identify your strengths, needs, what you like the most and your interests.

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Activity Worksheet: Transition assessment

Here are some questions to help you think about different parts of your life. These transition assessment questions can help you plan for your future:

1) How would you describe your home and family life?

a) What do you do for yourself?

b) How do you help your family (chores, laundry, dogs, etc.)?

c) How much does your family help you?

d) Are there things you could do on your own to be more independent?

2) What do you do to stay healthy?

a) Do you exercise or play sports?

b) What are your eating habits like?

c) Do you manage your own medications, if you take any?

d) Do you know how to set up your own doctors’ appointments?

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3) What do you do for fun?

a) What sports do you play?

b) What clubs are you in school?

c) What music do you like?

d) What do you do in your spare time?

e) What hobbies do you have?

f) Do you do any volunteer work with any organization that interests you?

g) Do you help out in your neighborhood (neighborhood clean-up, helping with elderly, etc.)?

4) What are your relationships like?

a) Do you have what you would call ―close friends‖?

b) How do you get along with your family?

c) Do you have a girlfriend or boyfriend?

d) Are you able to talk to people about your problems?

e) Are you able to communicate your feelings well?

f) Do you get along well with adults?

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5) How do you plan for your future?

a) What do you do in school to plan for your future?

b) What are your goals in life?

c) Do you know how to budget your money?

d) Do you use your time wisely?

6) Who runs your life?

a) Are you making your own decisions?

b) Are you doing what you really want to do in life?

c) Do you talk about your future with your family?

d) How do you deal with disagreements about your future with other people?

7) How are you preparing for your future career? Do you want to go on to school after high school?

a) Career assessment, vocational assessment, and evaluation can help you plan for your future (see information below).

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Vocational Assessment and Evaluation

Vocational assessment and evaluation looks at you as a worker. The best way to learn about you as a worker is to do work in different places. During these experiences, it’s important for you and those who are helping you (boss, teacher, job coach, counselor, or family member) to collect information on how you do in different settings. This can help you gain good experience that can help you make a good career choice. The different places you can experience work include: in school, in your town working for a company, volunteering, internships and summer work.

Lifelong career journey

Career assessment is another part of transition assessment and it deals with plans for your career throughout your lifetime. We all go through four stages of planning for our careers throughout our lives, which include awareness, exploration, preparation and adjustment.

Where Do You Want to Go? What Do You Want to Do?

How Do You How Do You Get Move Ahead? What You Want?

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Activity Worksheet: Lifelong career journey

Here are some questions to help you along your lifelong career journey.

Special thanks to Dr. Pam Leconte from The George Washington University for giving us permission to adapt the checklist from Sitlington, Neubert, Begun, Lombard, & Leconte. (2nd edition). (2007). Assess for Success: A practitioner’s guide for transition assessment. CA: Sage Publications (Permission received from Dr. Leconte to reproduce for educational purposes only) Where do you want to go?

 Why do people work? Why do you want to work?

 What are some jobs you know about?

 What kind of work do people do on these jobs?

 What have you dreamed of doing when you finish school?

 What kind of job do you want?

 Where do you want to live, and with whom, when you are grown up?

 What do you enjoy doing when you are not in school?

 What jobs do your mother, father, and other family members have?

 What types of things do they do on their jobs?

 What is college? Why do people go to college? What is vocational training?

 What is public transportation? How would you get there you want to go if your parents did not drive you?

 What is voting?

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What do you want to do?

 What jobs are you interested in visiting?

 What hobbies do you have?

 What activities do you do in your spare time?

 What volunteer or community service work do you do?

 If you have had a summer job, did you enjoy it? What parts did you like best?

 Do you like being inside or outside better?

 Do you prefer being with other people, or do you enjoy being by yourself?

 Do you enjoy working with your hands and with tools, or do you prefer to solve

problems in your head?

 Did you get along well with your classmates? If so, why did you? If not, why didn’t

you?

 What skills do you have that you can use in these or other courses?

 How do you get what you want?

 What courses do you need to take to get ready for your job?

 Will you need to take courses during high school and after to get ready for the job?

 What things will you need to get into these courses?

 How will you prepare to live on your own?

 Do you and your family plan for you to attend college or other training?

 How will you gain the skills needed to succeed in college or other training?

 Will you be able to get a job based on your high school and/or college coursework?

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 Does the school or college help you find a job?

How do you move ahead?

 Can you continue your training and education after you start to work?

 Does the employer help pay for extra schooling?

 How can you get promoted at your company?

 What benefits does your company offer (insurance, vacation, retirement)?

 What will you do if you get laid off or lose your job?

 Do you have options to take classes in areas that you enjoy (hobbies)?

 Can you transfer your job skills to another company, if needed?

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Understanding your strengths and talents

What is a strength? A strength is something you are naturally good at, also called an ability. For those of us with disabilities, our strengths are often overlooked because people might focus on our disability, rather than our abilities. Sometimes we will have different strengths than most people, but these abilities are just as important.

Perhaps some of you are already thinking about strengths that you know you have. But others of you might be wondering, ―Do I even have any strengths‖? Everyone has strengths and weaknesses, and everyone has something positive to contribute to their community. People can have all different types of strengths. Some people may have physical strengths (like being good at sports), or mental strengths (like problem-solving or being good at math.) Other people have moral strengths, which makes them good at determining right and wrong. Below is a list that might help you to figure out what your strengths are.

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Activity Worksheet: Self-assessment quiz: knowing your strengths

Knowing what your strengths are can help you to discover what kind of job you might be best at. Figuring out what you want to do begins with knowing yourself. The better you understand your own wants and needs, the better you will be able to make decisions about your career goals and dreams. This self-assessment inventory can help.

Check how good you think you are at the following activities. For each strength listed below, you can check if you are ―Really Good at This‖, ―OK at This‖, or ―Not Very Good at This‖ to describe how good you think you are at doing these things.

I am: Really Good OK Not Very Good At This At This At This

Sports    How are you using this ability?

______

Working with other people    How are you using this ability? ______

Working with animals    How are you using this ability? ______

Working or exploring outdoors    How are you using this ability? ______

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Giving others advice    How are you using this ability? ______

Math    How are you using this ability? ______

Reading    How are you using this ability? ______

Music    How are you using this ability? ______

Science    How are you using this ability? ______

Art    How are you using this ability? ______

Computers    How are you using this ability? ______

Drama/ Theater    How are you using this ability? ______

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Mechanics    How are you using this ability? ______

Making decisions    How are you using this ability? ______

Managing money    How are you using this ability? ______

Communicating    How are you using this ability? ______

Spelling and Vocabulary    How are you using this ability? ______

Directions and understanding maps    How are you using this ability? ______

Gardening/ Agriculture    How are you using this ability? ______

Writing    How are you using this ability? ______

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Exercise    How are you using this ability? ______

Politics    How are you using this ability? ______

Ethics    How are you using this ability? ______

Helping and caring for others    How are you using this ability? ______

Imagining    How are you using this ability? ______

Housework and cleaning    How are you using this ability? ______

Decorating    How are you using this ability? ______

Working with my hands    (Building and putting things together)

How are you using this ability? ______

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Cooking    How are you using this ability? ______

Time management    How are you using this ability? ______

Organizing    How are you using this ability? ______

Crafts    How are you using this ability? ______

Memorization    How are you using this ability? ______

Other- ______

How are you using this ability? ______

Other- ______

How are you using this ability? ______

Other- ______

How are you using this ability? ______

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Understanding your weaknesses: learning about the supports that can help

Okay, so now that we know what your strengths are, let’s ask ourselves another question: what is a weakness? Perhaps there are certain things you aren’t as good at. These things would be described as your weaknesses. However, there is something really cool about weaknesses: sometimes they can help you grow in ways you never would have guessed. For example, a person who uses a wheelchair because they have trouble walking may have improved upper body strength from pushing the wheelchair. This changes this person’s disability in one area to ability in another area. It is important to see the positive parts of every situation. Go back and look over the worksheets you just completed to help you answer these questions.

Activity Worksheet: Understanding your weaknesses and the supports you need

What skills might you need to improve? ______

______

What accommodations and supports could you use to improve on your weaknesses?

______

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Knowing your interests: Helping you plan for your future

The first step to thinking about our future is what we like or what we are interested in. This information can help you explore jobs and careers, as well as training after you complete high school.

Activity Worksheet: Knowing your Interests

Check the areas that most interest you. After you’re finished circle your top ten.

 Providing a practical service for people

 Self-expression in music, art, literature, or nature

 Organizing and record keeping

 Meeting people and supervising others

 Helping others in need, either mentally, spiritually, or physically

 Solving practical problems

 Working in forestry, farming, or fishing

 Working with machines and tools

 Taking care of animals

 Physical work outdoors

 Protecting the public via law enforcement or fire fighting

 Selling, advertising or promoting

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Circle True (T) or False (F) for the following questions

I get satisfaction not from personal accomplishment, but from T F helping others. I’d like to have a job in which I can use my imagination and be T F inventive. In my life, money will be placed ahead of job security and personal T F interests. T F It is my ambition to have a direct impact on other people’s lives. I am not a risk-taker and would prefer a career that offers little T F risk. T F I enjoy working with people rather than by myself. T F I would not be happy doing the same thing all the time.

What matters most to you?

For each item check the box that says how important each item is to you.

This is: Really Important Somewhat Important Not Important To Me To Me To Me Good health   

Justice   

Marriage/family   

Faith   

Fame   

Beauty   

Respect   

Accomplishment   

Seeing the world   

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This is: Really Important Somewhat Important Not Important To Me To Me To Me

Love   

Fun   

Power   

Individualism   

Safety   

Friendship   

Charity   

Honor   

Intelligence   

Wealth   

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Activity Worksheet: Celebrate your Strengths

Take the time to celebrate who you are and how far you have come. Each one of us is created special and unique (one of a kind). We all have something important to give to the world, so let your strengths show.

1) Review your strengths

2) Find a good listener to help you review everything you have done. It’s helpful to have other people give you input, since it’s sometimes hard to be objective about yourself.

3) Discuss work and non-work projects you have been involved in over the last 5 years.

4) Regularly review your strengths

5) Make a list of your strengths and read it to yourself regularly, adding to it as you go.

6) Praise yourself for what you have achieved.

7) Review your strengths whenever you are feeling particularly defeated.

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What does this all mean to you? Pulling it all together!

In this section you have learned a lot about what assessment is and how it can help you in your transition planning and lifelong career journey. Since assessment is always happening throughout your transition process, how do you keep track of it all? Here’s an idea on how you can you do that. Portfolios

Portfolios are a collection of assessment information about you. They can help you communicate what your dreams, goals, interests and abilities are to people who can help you get to where you want to go. Portfolios can help you grow by learning about yourself, by putting your assessment information all in one place. You are in control of your portfolio and can include anything you feel that is important in telling your story. Some examples of information to put in your portfolio would be: background information, writing your story or journal, job history, samples of your work, video clips of you working, and assessment information. Portfolios can be in a kept in an electronic form or in a binder. Sometimes people use PowerPoint to create their Portfolio. Pick the way that works best for you. Don’t forget, you are in the driver’s seat!

Build your portfolio through your years in school. To start, use the worksheets you completed from this Toolkit. It will help you plan for your future. It can be shared with your family, teachers, OVR counselor and other agencies that can support you. Some information can be used to show your talents and abilities to employers.

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Summary of Performance

Another document to help you pull together information you need to plan for your future when you leave high school is called a summary of performance. In Pennsylvania this summary is call a Summary of Academic Achievement and Functional Performance. Your teacher will complete this form with you prior to leaving school.

There are four parts to a summary of performance:

Part 1 includes general information about you, such as your name, address and contact information.

Part 2 includes information about your academic levels in reading, math, etc. and accommodations you received in school. Also included is assessment information in the following goal areas and accommodations you use: career/jobs; social skills and behaviors; and your ability to live and do things on your own (budgeting money, laundry, shopping, etc). Ideas are given on what you might want to think about in your future plans.

Part 3 focuses on your goals in the following three areas:  Postsecondary education and training (college or tech school goals)  Employment (career and job goals)  Independent living (where you want to live, transportation, money)

This section also gives you suggestions about next steps, agencies that might be able to help you, their contact information and ideas on how they may be able to help.

Part 4, which is optional, gives you a chance to voice your opinion in the following areas:

 What things that have helped you do well in school (accommodations, supports, services, equipment)?  What accommodations and supports worked best for you?  What do others need to know about you to help you achieve your goals?

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In summary Phase One: Accept Yourself!

Reality check The definition of disability

The five general categories of disabilities

1. Physical disability: People with this type of disability may have difficulties with movement or mobility. They may use assisted devices such as wheelchairs or walkers.

2. Sensory disability: People with this type of disability may have difficulty hearing or seeing, or both. Individuals with visual impairments may use Braille, canes, or large print to assist them. People who are hard of hearing or deaf may use hearing aids or cochlear implants.

3. Cognitive disability: People with this type of disability may have difficulty learning, communicating, and remembering information. They may also have trouble with problem-solving, paying attention, or understanding reading, math, or visual information. They may use daily planners, more time on tests, or quiet areas to study.

4. Psychiatric and emotional disability: People with these types of disabilities may have difficulty with emotions and behaviors. Often these individuals are diagnosed with Depressive Disorder, Anxiety Disorder, Psychotic Disorder, and/or Mood Disorder. People with this type of disability may use medications, coping skills, or counseling.

5. Health-related disability: People with this type of disability might have a physical condition that affects their overall health. They may have limited strength, vitality, or alertness due to chronic or acute health problems such as a heart condition, rheumatic fever, asthma, hemophilia, and leukemia.

Things to never forget!  Having a disability is not a bad thing  Know your strengths and weaknesses  Stay positive 

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Guess what… you have a disability

Part of accepting yourself is knowing that you have a disability and how it affects your life. Want to learn about your disability? Here are some places you can go

 Your Parents  Your Teachers  The Internet (Google it!)  Go to the Library!

Accommodations -- what are they?

The definition of accommodation is: Things that help you succeed at a given task. Your high school is required to give you the accommodations you need. Colleges and employers will help; you just have to let them know what you need. Once you are in college or working it is up to you to get the supports you need.

Examples:  Extended test time  Braille Menus at a restaurant  Assistance in reading a book or a test  Books on tape

Don’t let your disability negatively affect your social life!

Just because you have a disability doesn’t mean you can’t get out and do things. A lot of youth with disabilities are afraid of being social because they: o Feel different or stupid o Feel sorry for themselves o Lack self confidence o Feel like people will be mean to them or pity them

Always make an effort to be social, because friends and family can support you through a lot of hard times in your life!

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Activity Review Questions: Phase One

To help you learn about the things we covered in Phase I, answer these questions:

1) Looking back over the five categories of disability which one do you belong to?

2) To be ready to talk to other people about your disability, write down a brief description.

3) How can you remain positive about having a disability?

4) What is an accommodation, and what are some accommodations that you use often?

5) Do you sometimes find it difficult to be social? If so, what are some ways that you help yourself be more confident around other people?

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Phase Two: DECLARE YOURSELF!

Developed by youth for youth

1st Edition July 2008 PYLN

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PYLN personal story

Transition: Joe’s story

From my elementary transition plan and what an IEP was. school through middle Then my teachers and counselors told school years I never had me about my IEP and transition plan and a problem with my IEP or let me become involved. A lot of the th th transition plan. This was students in my 9 and 10 grade because my mom and my classes didn’t know what their disability dad were very involved. I also had my was either, thanks to the programs in elementary school principal and my the my school, now students know about learning support team helping in the their disability. After high school I effort as well. But during my high school attended Empire Beauty school and years I became involved with my applied what I learned in school by transition plan and my IEP. Before I was getting better grades on tests since I in high school I never knew what a knew how to advocate for my accommodations.

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Transition: Collan’s story

My name is Collan Baker. I had visited Hiram G Andrews I am a 2008 graduate when I was in 10th grade, along with job from Youngsville High fairs, and college expos. I decided that School. I participated in Hiram G. Andrews was where I wanted track, and chorus to go. It took my whole senior year to lettering in both through complete all the requirements to attend out high school. I also received a Hiram G. Andrews. scholarship from the Choral Music When it comes to making career Boosters at my graduation. choices this can be a hard thing for I have always found it difficult to anyone to do. That’s why it is important advocate for myself. It would have been to start your search early in high school. easier if others could have read my I have worked during the summer for mind. I didn’t attend my own IEP the past 3 years, this has also helped me meetings until 10th grade. I didn’t like with decision making about my future. hearing others talk about me. In 11th All youth need to be a part of their IEP grade I finally realized the importance from the beginning. If you don’t of letting the IEP team know what I understand something ask questions, and wanted to do after high school. you can be an important member of the team. Remember this is about you.

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Speak up for yourself

What is advocacy and how to do you advocate for yourself?

Advocacy can be easily defined as an action that produces change.

American’s with Disabilities Act- ADA

If you’re a person with a disability you can live an independent productive life, but you will find yourself in situations that will try to hinder your independence. Society’s stereotypes are among the barriers you will face. However, you can do something about it. You can take a stand and let your voice be heard. You can be an agent of change, either as an individual or as a part of a larger group.

The PYLN believes that one of the most important parts of becoming independent is learning how to advocate for what you want. If you advocate for yourself, you are speaking up for what you want, and not letting other people speak for you. Too many times young people allow other people (usually adults) to make decisions for them. While advice and assistance from adults is a good thing, your future is your decision! This sheet is going to give advice on how to be your own self advocate.

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The 4 keys to being a good self advocate

1) Do Research In order to tell people what you want, you need to know what is out there. What are your options? What do you have to do to get the things you want? It is up to you to do your homework about things like colleges, accommodations, and places you can go to get the things you need (example: Office of Vocational Rehabilitation). You need to know the pros and cons about decisions, and be able to make an educated decision.

2) Communication Learning how to communicate with people is key to advocating for your needs.  Be polite- No yelling, manners go along way, BUT DON’T LET PEOPLE WALK ALL OVER YOU. (Don’t forget to smile )  Be confident- You need to know what you want to say! (You did research; you know what you’re talking about)  Be heard- It is your life, make your feelings known, people can’t read your mind.

3) Compromise While the decisions that are being made are about you, it is important to be open minded about other people’s advice and ideas. Make sure that you are realistic about your goals (example: if you are not a good athlete, wanting to be in the NBA is probably not a good career goal).

4) Teamwork You have a great number of people you can count on for good advice. Know who the people are who you can count on. Let the professionals do their jobs, and let your parents be your parents. Let your friends be your friends. They all have an important role in your transition process. Listen to their advice but always understand….ITS ALL ABOUT YOU!

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Healthcare advocacy

Did you know that transition affects more than your education? Almost all parts of your life will transition in some way. Healthcare transition is a very important step for all youth to become independent. Often this transition includes finding new doctors, possibly changing hospitals, services you receive, and getting different insurance coverage. When you turn 18, you are considered an adult by the medical community. This means that you are in charge of your medical decisions. Your doctors will be asking you about your medical needs, your history, and should ask what procedures you may or may not want. However, your family or guardians can still be involved in the decisions. You need to be prepared to handle these changes and begin to understand your care as an adult. Self advocacy DO’s and DON’T’s

Advocacy is not always easy; in fact, it rarely is. Advocacy takes time, knowledge, and dedication. Often when we have to advocate we may be in positions where we are upset, angry, and ―caught in the heat of the moment.‖ Although these moments may seem right to advocate, it is often better to wait and become more informed before advocating. Below is a list of things that should and should not be done when advocating. Advocacy is a skill that takes practice, the more you practice advocacy the better you will get.

DO’s DON’T’s Be polite Yell or demand Ask questions Be shy Know your information Come to a meeting unprepared Keep a record of important papers, Lose your records, phone numbers, names phone numbers and names: Be of people who helped and hindered you organized Send thank you notes and show your Be ungrateful for people’s time and effort appreciation Give your contact information, and Don’t network also remember to get theirs too! Be Confident Be a push over or arrogant (overconfident)

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How to find supports There are some important things to remember when trying to locate supportive people to aid you throughout your transition process. The first thing to remember is that almost anyone can be a source of support; parents, teachers, friends, rehabilitation counselors, church leaders, etc. The second important thing to remember is that a supportive person needs to be someone who believes in you and your abilities. Likewise he or she is someone who can help you generate new ideas about transition-related goals.

It is important to first consider the supports you may already have in your life. These could be friends, family, teachers, and many other people who believe in your abilities and want to see you do well. Talk to them about what you have learned so far about your disability and transition process. Once they understand your disability and transition plans, they will be able to become fellow advocates, and will be a source of ideas for future transition related goals.

If for any reason you do not already have some sort of support system in place, there are a lot of places where you can look for supportive people. Perhaps you have a parent or guardian who can help you discover your abilities and aide in the transition process. You may have a teacher or counselor who might have some new ideas about realistic goals and how you can accomplish them. Speak regularly with your rehabilitation counselor or supports coordinator, if you have one, and use him or her as a source of help and information. Chances are he or she will be impressed by your willingness to learn. If you don’t have a vocational rehabilitation counselor, contact your regional Office of Vocational Rehabilitation and they can give you an application for services. Contact other agencies for people with disabilities, and tell them that you want to make sure that you have access to all of the support services that you need.

Finding supports may be as easy as talking to your parent or guardian, or it may require a little more thought and work. No matter what your situation, however, there are always people out there who will believe in you and help you through the transition process. Sometimes it’s just a matter of knowing where to look.

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Help in school: The Individualized Education Plan (IEP) and the Secondary Transition Process

Many youth hear about their IEP’s and their transition plans, but few students actually know what their school is talking about. This section will help you to:

 understand the federal law that protects your rights

 discuss the parts of an IEP and why it is important for you to participate

 use the transition process to plan for your future

What is IDEA?

IDEA stands for the Individuals with Disabilities Education Act. This is a national law which determines the accommodations and supports provided to students with disabilities from ages 3 to 21. IDEA works to ensure that all students have a Free Appropriate Public Education (FAPE), which means all students should be taught in a public school for free while getting an education that is right for the person. This education should help the student goals of further education, employment, and/or independent living. IDEA requires that students with disabilities have an IEP, or an Individualized Education Program.

What is an IEP?

When you have a disability, you have certain legal rights to help you succeed. The Individualized Education Program (IEP) is one of those rights. An IEP is a form that summarizes what you do well, the needs you have, how your disability affects your learning, what skills you need to work on in school this year, what services your school will provide, and where your learning will take place. It also lists the accommodations you receive and what your goals are for high school and after high school. It is created by a team of people who include your teachers, your family, and most importantly, you! You are also allowed to invite whoever else you feel needs to be a part of your ―team‖ (such as friends, a pastor, or a counselor.) Since your IEP is all about you, you have a unique opportunity to be in control of your life and your experiences in high school. Having

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input and actively participating in your IEP can help you be successful long after you graduate.

Your school and teachers are responsible for making sure that the goals, accommodations, and supports that are written in your IEP are working for you. Each year, your IEP must be reviewed. This is done at what is called an IEP meeting. Your IEP is reviewed once a year, and updated as needed.

What is transition planning in the IEP?

Transition planning must be included in your IEP beginning at age 14. Transition planning helps you figure out what you are going to do after you graduate from high school. Transition is an organized set of activities that helps you move from high school to college, post-secondary training, independent living or work. It is focuses on what you need and what you want to do.

Once you graduate from high school, the assistance and services you receive from your teachers such as occupational therapy, physical therapy, speech therapy, wrap around services and the people who help you with math, reading, behavior, test taking, etc. will no longer be there to help you. But as you know life does not end after you leave high school. Therefore, you need to have a plan to be able to achieve your goals and live life as an adult. The transition process was created to help you set your goals and get the things you need to achieve your dreams.

Your school is required to help you develop post-school goals for when you leave school. Your post-school goals are found in your IEP.

The three ―post-school goals‖ that you need to think about when planning your future are:

1. Post secondary education or training (going to a 2-4 university, community college, technical school, or anything that furthers your education)

2. Employment (getting a job)

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3. Independent Living ( how to live on your own successfully – where do you want to live, how will you get around in your community, what do you want to do in your free time)

How do I set post-school goals?

To be able to set post-school goals, you need to know about yourself including your interests, strengths and weaknesses. Assessment is a process where you learn about yourself and your post school goals. Even though assessment may involve taking some tests, it can also involve things like learning about jobs through real life experiences. When you are asked to take a test, it’s important for you to learn about why it is happening, what to expect and how you can get accommodations to take the test. After take the test it is important to sit with someone you trust to talk about what happened, how you are feeling and review your results. This information can be used to help you develop your post school goals.

Your post school goals directly influence the classes and activities you will take during high school. Transition planning helps the IEP team know about what you are interested in doing and includes agencies that my help you transition out of high school more easily.

What can be scary about your IEP?

Going to your first IEP meeting can be overwhelming. You will probably see:

1. A bunch of people wearing shirts and ties. 2. A couple people you do not even know 3. Your principal and your parents in the same room 4. That it can be hard to speak your mind. 5. That teachers use their own language

Even though an IEP meeting can be scary it is your chance to have a say in the classes, activities, and supports you have in high school.

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How You Can Participate in your IEP?

1. Do Research- Ask to know what your IEP says before the meeting. You should try to truly understand what it says

2. Write it Down- Think about what you want to say and write it down so you don’t lose track of your thoughts

3. Communicate- Your IEP is about you! Know your strengths and weaknesses and tell people what you could use to help to do better. Tell your IEP team what you see for your future (if you don’t know that’s ok).

4. Be a part of the team- Get to know the people that are on your IEP team, know what they can do for you. Letting the adults know what you want is important, but also keep in mind that adults might have some good ideas and suggestions-they are ―professionals.‖ Remember, be polite but be willing to fight for what you need.

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Getting Involved in My IEP

Activity Worksheet: Guide of questions to help you take charge of your IEP and transition plan

Questions to ask your teacher about your IEP

1) What is my IEP?

2) What are my IEP goals?

3) How does my IEP effect my education?

4) How does my IEP prepare me to live independently?

5) What is your role in my IEP?

6) What is my role in my IEP?

7) What is my parent/guardian’s role?

8) Who else is part of my IEP team?

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Questions to ask your teacher about your transition plan Transition Planning Worksheet: What are my goals for after high school?

3) What am I doing in school that is helping me achieve my goals? ______

______

What supports and services are out there to help me with the following? a. Going to College , Business, Technical or Trade school

ii.

iii.

b. Getting a job (Employment)

ii.

iii. c. Living on my own

ii.

iii.

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2) What does my local Office of Vocational Rehabilitation (OVR) do and how can they help me? What is their address, phone number and website address?

3) What does my local MH/MR office do and how can they help me? What is their address, phone number and website address?

4) What is a Center for Independent Living and how can they help me? What is their name, address, phone number and website address?

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Activity

How to Participate in MY IEP

Because the IEP is about YOU, you need to be the one in charge during the IEP meetings. Everyone will be talking about your education and life, so it is important for you to express your opinions. If you feel that something needs to be created or changed in your IEP, there are steps you can take to do so.

Getting ready for the IEP meeting

Before your IEP meeting get prepared.

Review your IEP from last year and make notes on the changes or additions you would like to see. Also highlight things you don’t understand. Talk to a trusted adult about what you would like to see in this year’s IEP

Before the meeting do your homework so that you are able to:

Before you enter your next IEP meeting, be prepared to answer the following questions:

1) discuss your post-school goals

2) describe your disability

3) talk about your strengths and needs

4) describe your learning style (how you learn best and what gets in the way of your learning)

5) tell team members the accommodations you need and why you need them

6) describe any medications you are taking or medical needs you have

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At the IEP meeting

1. Don’t just sit there:

By the time you are in high school, you should consider running your own IEP meeting. If you don’t know how to run a meeting, ask a family member, favorite teacher, or a trusted adult for help. Before the IEP meeting you can get together a small group of people (family members, friends, or other trusted adult) to help practice what you want to say. At first you may feel uncomfortable talking at your IEP meeting. If it helps write down what you want to say and have someone you trust read it. Or you could, put together a PowerPoint, or short video of what you would like to have discussed at your IEP.

2. Review IEP pages one and two

Make sure your age and the correct date you expect to graduate are both listed. You will also be required to sign the IEP form to prove that you were at the meeting.

3. Discuss and Identify Your Post School Goals (IEP Section 3)

4. Talk about how you are doing in school (present levels of academic achievement and functional performance)

At this part of the IEP meeting you and the other team members will talk about how you are doing in school in connection to what you want to do after you graduate.

5. Talk about the classes and activities you will be taking this school year.

Go back to section 3 the Transition Chart Section of the IEP. In this chart the classes that you will be taking this year are listed along with the activities or services you will receive that will help you reach your post school goals. Included in this section is information on where and when the activity will take place and who will help you.

For each of your post school goals you will need to be working on at least one annual goal. In the chart at least one activity or service should have ―yes‖ checked that there is annual goal in your IEP. PYLN TOOLKIT 77

6. Annual Goals

Things to think about when discussing and reviewing your goals:

 What skills do you need to work on to reach your post school goals?

 Are there any health issues that interfere with learning or being in class all day?

 Do you have any behavioral issues that you need to work on?

 Are the annual goals in your IEP are based on your post school goals?

 Are your IEP goals should be written so that you understand what you need to work on this year?

 Did you agree to work on this year goals for this year?

 Are you able to understand how your progress will be measured throughout the year and how you will know that the goal has been reached?

7. Complete the other sections of the IEP

Based on your transition post school goals you and the other team members will discuss any accommodations, supports or related services that you will need to be successful during this school year.

 Modifications and Specially Designed Instruction (accommodations) are the changes to the class work or things that help you succeed in your classes and other activities.

 It is important to know what accommodations you are getting now so that you can ask for them and succeed in the future. As an adult you are expected to know what you need and what your accommodations are.

Some examples of Specially Designed Instruction are:

1. Extended time to finish tests 2. Wheelchair Ramps 3. Braille Menu at a restaurant PYLN TOOLKIT 78

4. Assistance in reading a book or a test 5. Books on tape

 RELATED SERVICES: Are the extra services that you need in order to be successful in your education program.

Some examples of Related Services are:

Physical Therapy (PT) Occupational Therapy (OT) Speech Language Therapy

When is your next IEP meeting?

Write the date below, and be prepared to participate!

______

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Activity

How to Make Sure My IEP is Going as Planned

Throughout the year, i.e. at the end of each grading period, you should ask yourself the following questions to make sure you are making progress on your goals and that you are getting the right supports:

Are you getting the accommodations and related services discussed at your IEP meeting? If not, what are you not getting?

If you are not getting the accommodations and related services discussed at your IEP meeting who can you talk to about getting them?

What are your IEP goals?

Who can you talk to if you are not where you would like to be with your annual goal(s) progress?

What successes are you having in reaching your post school goals?

What challenges are you encountering in reaching your post school goals?

Have you contacted any agencies or talked to any who can help you with your post school goals?

Are you learning better and growing?

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Checklist For Preparing for Successful Post-School Outcomes:

Middle School

Special thanks to: The Office for Disability Services, Penn State University, 814-863- 1807, Web site: www.equity.psu.edu/ods/ (modified to be youth-friendly, with permission)

Middle School: Students should:

_ Identify personal learning styles and the necessary accommodations to be a successful learner and worker. (for example, do you learn something best by reading it, hearing it, or doing it?)

_ Develop an understanding of your disability.

_ Make sure that you have good class attendance.

_ Begin to think about your career options.

_ Begin speaking to your guidance counselor about what high school classes will best prepare you to meet your goals.

_ Ask your guidance counselor what career assessments may be most appropriate for you to take.

_ Eat healthy and exercise daily.

_ Participate and volunteer in school, extracurricular, and community activities.

_ Develop a portfolio you will use throughout your high school education. To start, use the worksheets you completed from this Toolkit. It will help you plan for your future. It can be shared with your family, teachers, OVR counselor and other agencies that can support you. Some information can be used to show your talents and abilities with employers.

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Checklist for Preparing for successful post school outcomes: NINTH GRADE Ninth Grade:

Students should:

_ Attend and be involved in IEP meetings with parents, teachers and special

education personnel.

_ Develop a clear understanding of your disability and how it affects your life.

_ Broaden experiences through community activities and expand friendships.

_ Find out if you are eligible to get financial supports such as Supplemental

Security Income (SSI), Medicaid, and state waiver programs.

_ Ask the school about career assessments and exploration programs at the high

school (e.g., Does the school provide career counseling or testing?).

_ Meet with guidance counselors about courses required for employment, vocational

training, and college or postsecondary school (i.e., Foreign Language, Math,

English, Science, etc).

_ Be able to describe your disability and advocate for supports and

accommodations.

_ Have an identification card and be able to communicate personal information.

_ Discuss plans/goals with parents about what you will do after you graduate.

_ Start thinking about where you would like to live and the supports needed to live

there.

_ Meet with guidance counselors about future plans. Obtain information about

employment, vocational training, and colleges or postsecondary schools.

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_ Search Web sites for employment, vocational training, colleges and postsecondary

schools to learn more about course requirements, potential majors, costs, services

for students with disabilities, living arrangements, activities, student life etc.

_ Look into driver’s education when the time is right. And pursue and use local

transportation systems outside of your family.

_ Explore assistive technology (such as wheelchairs, reachers, and TTY, etc.) to be

more involved in your community and to reach your goals.

_ Consider volunteer opportunities in your community to better yourself and your

opportunities for careers.

_ Start practicing skills in decision making, time management, and organization

skills.

_ Understand your health care needs and be able to communicate this to you

medical team.

_ Participate in extracurricular activities.

_ If you are considering vocational training, participate in an open house at a Career

and Technical Education Center.

_ Become informed about sexuality and family planning.

_ Continue to build your portfolio you will use throughout your high school education. To start, use the worksheets you completed from this Toolkit. It will help you plan for your future. It can be shared with your family, teachers, OVR counselor and other agencies that can support you. Some information can be used to show your talents and abilities with employers.

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Checklist for Preparing for successful post school outcomes: TENTH GRADE Tenth Grade:

Students Should:

_ Broaden experiences through community activities and expand friendships.

_ Continue attending IEP meetings and become more involved in the decisions made.

_ Find out if you are eligible to get financial supports such as Supplemental Security Income (SSI), Medicaid, and state waiver programs.

_ Search the Internet and other resources (i.e., books, articles) to learn more about your disability.

_ Identify how your disability impacts you in the classroom, at work, and in social settings. You should be able to discuss your disability and its affect on your education.

_ Learn more about the differences between accommodations adjustments in college, employment, or independent living versus high school.

_ If you are considering college, think about taking the PSAT, which is a practice test for the SAT, which many colleges require for entrance. Explore possible accommodations for the test. Go to the College Board Web site for more information: http://www.collegeboard.com/testing/.

_ Begin to use accommodations that are more in line with what is used in college or training and employment after high school. Individualized instruction and certain modifications used in high school will not be provided after high school.

_ Participate in a career assessment and make appropriate career choices. These choices should match your individual strengths and goals for postsecondary education.

_ Research the requirements needed to achieve your goals in postsecondary employment, education, or independent living.

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_ Participate in volunteer and paid work experiences.

_ Meet with your guidance counselor to determine if the courses you are taking can help you reach your goals in postsecondary education, employment, and independent living.

_ Visit and tour colleges and postsecondary school campuses.

_ Become involved in activities beyond the classroom (i.e., clubs, sports, student government, community service, volunteer organizations, etc). Postsecondary schools look for these activities in addition to grades and test scores when determining admissions.

_ Discuss options and choices for employment, postsecondary living, and independent living with parents.

_ Practice and learn independent living skills such as budgeting, cooking, shopping, and housekeeping.

_ Identify adult health care providers.

_ Know how your interests can help you learn about jobs you might like to do.

_ Take part in job shadowing experiences.

_ Talk to your family, friends, and people in the community about employment opportunities.

_ Investigate support services available through vocational rehabilitation, public welfare, local transportation systems.

_ Identify needed personal care attendant (PCA’s) services, and if appropriate, learn to direct and manage these services.

_ Practice job interviewing skills.

_ Know what accommodations you need to work and be able to explain them to someone you trust, so you’re ready to talk to an employer.

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_ Find out if your school or OVR counselor has employers that would help you practice interviews.

_ Go to job fairs to learn about jobs.

_ Use tools and resources on the internet to learn about jobs, like what training is needed, salaries and whether the jobs are in your community.

_ Apply for jobs.

_ Participate in a community-based work assessment and learn your strengths and weaknesses are, and the supports you need.

_ Ask your teacher if you can explore work through unpaid work experiences as part of your transition plan.

_ Use the assessment worksheets in this toolkit to help you explore and prepare for a job.

_ Be honest with yourself about what you’re good at and work on this things you could improve.

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Checklist for Preparing for successful post school outcomes: ELEVENTH GRADE

Eleventh Grade:

Students Should:

_ Continue attending IEP meetings and become more involved in the decisions made.

Invite individuals from the Office of Vocational Rehabilitation (OVR) and other

service agencies.

_ Broaden experiences through community activities and expand friendships.

_ Participate in volunteer and paid work experiences.

_ Continue to develop self- advocacy skills (asking for help, communicating needs to

others, etc.)

_ If you are having trouble locating a specific school or program on your own, make

an appointment with your guidance counselor.

_ Learn how to ask for job accommodations Postsecondary Education

_ Attend college fairs.

_ Research college disabilities services web sites or call the office to learn about

eligibility for services, documentation guidelines, and services offered. Also, pay

particular attention to admissions criteria, admissions deadlines, financial aid

information, scholarship information, programs, cost, housing and food services.

_ Contact the disability services office for a face-to-face meeting. Learn more

about the academic accommodations and supports that are offered and for which

you qualify.

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_ Meet with a representative from the admissions office to find out admissions

criteria. What will be needed in addition to filling out an application?

_ Be aware that accommodations and supports in postsecondary education may be

different than they are in high school. Begin to think more independently and

practice stronger self advocacy. For example, if you are using an aid, begin to

think about how you would work more independently.

_ Continue to research college web sites. Research application procedures, course

requirements, and entrance requirements for colleges of interests.

_ Identify tests required for admission at the college or colleges chosen: (e.g., SAT

I, ACT Assessment, or SAT II Subject Tests).

_ Register and take the SAT and the ACT, if not taken in the tenth grade. Explore

possible accommodations for the test, and apply for them. For information

regarding SAT testing for students with disabilities, go to the following web site:

http://www.collegeboard.com/ssd/student/index.html. Discuss the results with

guidance counselor and parents.

_ Contact the Office for Vocational Rehabilitation (OVR) for information about

services for high school and college at http://www.dli.state.pa.us, click on

disability services, click on OVR.

_ Complete an assistive technology assessment for college, if you plan to use

assistive technology in college.

_ Obtain documentation of disability from current assessments (within two years of

graduation date) because colleges require assessments.

_ The summer prior to senior year, visit the disability office, learning centers,

computer labs and assistive technology labs at postsecondary schools and colleges

of interest.

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_ Ask your teacher or OVR counselor is there are any pre-college experience

programs that you could attend over the summer, or take a college course for the

experience. Employment _ Know how your interests can help you learn about jobs you might like to do.

_ Take part in job shadowing experiences.

_ Talk to your family, friends, and people in the community about employment opportunities.

_ Investigate support services available through vocational rehabilitation, public welfare, and local transportation systems.

_ Identify needed personal care attendant (PCA’s) services, and if appropriate, learn to direct and manage these services.

_ Practice job interviewing skills.

_ Know what accommodations you need to work and be able to explain them to someone you trust, so you’re ready to talk to an employer.

_ Find out if your school or OVR counselor has employers that would help you practice interviews.

_ Attend job fairs to find out about jobs.

_ Use tools and resources on the internet to learn about jobs, like what training is needed, salaries and whether the jobs are in your community.

_ Apply for jobs.

_ Participate in a community-based work assessment and learn your strengths and weaknesses are, and the supports you need.

_ Ask your teacher if you can explore work through unpaid work experiences as part of your transition plan or an internship.

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_ Use the assessment worksheets in this toolkit to help you explore and prepare for a job.

_ Be honest with yourself about what you’re good at and work on the things you could improve.

Independent Living _ Independent living is about more than just where you live, it is about choosing how, where, and with whom you live. _ Begin making connections to agencies that could help you, like centers for independent living and housing authorities.

_ Find out if you are eligible to get financial supports such as Supplemental Security Income (SSI), Medicaid, and state waiver programs.

_ Eat healthy and exercise daily.

_ Practice and learn independent living skills such as budgeting, cooking, shopping, and housekeeping.

_ Start thinking about how you are going to pay for living on your own. If living on a fixed income, think about getting on a waiting list for low income housing.

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Checklist for Preparing for successful post school outcomes: TWELFTH GRADE Twelfth Grade:

Students Should:

_ Continue attending IEP meetings and become more involved in the decisions made. Invite individuals from the Office of Vocational Rehabilitation (OVR) and other service agencies.

_ Broaden experiences through community activities and expand friendships.

_ Practice effective communication by developing interview skills, asking for help, and identifying necessary accommodations at post secondary and work environments.

_ Prepare transition packet for disability documentation that includes: evaluation reports, transcripts, test scores, current IEP, medical records, writing samples, and letters of recommendation.

_ Participate in volunteer and paid work experiences.

_ Become involved with advocacy and support groups.

_ Take responsibility for arriving on time to classes, work, appointments, and social activities.

_ Assume responsibility for health care needs, such as making appointments, and filling and taking prescriptions.

_ Register to vote at age 18 (and register for selective service.)

_ Identify adult support provided by community based agencies.

_ Obtain letters of recommendation for employment and education (remember to get letters from teachers before graduation.)

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Postsecondary Education

_ Begin completing postsecondary school and college applications. Applying early may increase the chance of getting into school or college of choice.

_ Learn about advocating and talking to your instructors about academic accommodations.

_ Research the disability services office Web site to review documentation guidelines and obtain what is needed.

_ After you have been accepted into a college, contact disability service offices at colleges to schedule and participate in an intake appointment.

_ At the intake meeting for disability services, provide the correct documentation about your disability and services to the office. Discuss requested academic adjustments to determine if your request is reasonable (academic adjustments received in high school are not always appropriate for college).

_ Submit documentation to the disability services office at the postsecondary schools or colleges that you have chosen.

_ Meet with a professor, academic advisor, or representative of the college major you intend to pursue.

_ Meet with financial aid office to discuss and apply for scholarships, grants and aid.

_ Schedule an appointment with the Office for Vocational Rehabilitation (OVR) http://www.dli.state.pa.us/landi/cwp/view.asp?a=128&q=61197 to discuss assistance available.

_ Request and schedule an assistive technology assessment through OVR, if applicable.

_ Talk with students who are receiving services at the college and other postsecondary education training settings about their experience.

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Employment

_ Know how your interests can help you learn about jobs you might like to do.

_ Take part in job shadowing experiences.

_ Talk to your family, friends, and people in the community about employment opportunities.

_ Investigate support services available through vocational rehabilitation, public welfare, local transportation systems.

_ Identify needed personal care attendant (PCA’s) services, and if appropriate, learn to direct and manage these services.

_ Practice job interviewing skills.

_ Know what accommodations you need to work and be able to explain them to someone you trust, so you’re ready to talk to an employer.

_ Find out if your school or OVR counselor has employers that would help you practice interviews.

_ Develop a career portfolio to show your talents and skills.

_ Use tools and resources on the internet to learn about jobs, like what training is needed, salaries and whether the jobs are in your community.

_ Apply for jobs.

_ Participate in a community-based work assessment and learn your strengths and weaknesses are, and the supports you need.

_ Ask your teacher if you can explore work through work experiences or internships as part of your transition plan.

_ Use the assessment worksheets in this toolkit to help you explore and prepare for a job.

_ Be honest with yourself about what you’re good at and work on ways you could improve.

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_ Ask your teacher or OVR counselor if you can participate in an internship.

Independent Living

_ Make detailed plans for independent living. Continue development of independent living skills.

_ Find out if you are eligible to get financial supports such as Supplemental Security Income (SSI), Medicaid, and state waiver programs.

_ Eat healthy and attempt to exercise daily.

_ Practice and learn independent living skills such as budgeting, cooking, shopping, and housekeeping.

_ Begin to think about what kind of insurance you will receive after high school.

_ Independent Living is about more than just where you live, it is about choosing how, where, and with whom you live.

Think about the following questions:

_ Do you want a house or an apartment?

_ Will you have roommates or pets?

_ Do you have any accessibility or transportation needs?

_ Develop a list of questions you want to ask each landlord

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In Summary

Phase Two: Declare Yourself!

Reality check

Terms to know

1) Transition - An organized set of activities that helps you move from high school to college, post-secondary training, independent living, or work successfully. Transition focuses on what you need and what you want to do with your future 2) Self advocate - A person who speaks up for themselves and what they want! 3) Post school goal - Things that students decide to do with their life after they leave school 4) Individualized Education Plan (IEP) - A form that outlines your abilities, skills you need to work on in school, and your accommodations and helps you plan for your future goals. 5) Americans’ With Disabilities Act (ADA) - Law passed in 1990 by Congress to ensure that people with disabilities would have equal access and equal rights

The three post school outcomes

1. Post secondary education or training (going to a 2-4 university, community college, technical school, or anything that furthers your education)

2. Employment (getting a job)

3. Independent Living ( how to live on your own successfully – where do you want to live, how will you get around in your community, what do you want to do in your free time)

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Keys to being a good self advocate:

1) Do research - Know your options! 2) Communication - Talk to people! Be assertive, but polite! 3) Compromise - Let your teachers and parents lend a helping hand they know their stuff. 4) Teamwork - Know who you can ask to be a part of your IEP team.

DO’s and DON‖Ts of being a self advocate

DO’s DON’Ts Be polite Yell or Demand Ask questions Be Shy Know your information Come to a meeting unprepared Keep a record of important papers, Lose your records, phone numbers, names phone numbers, names: Be organized of people who helped and hindered you Send Thank You notes and show your Be ungrateful for people’s time and effort appreciation Give your contact information, and Don’t network also remember to get theirs too! Be Confident Be a push over or arrogant (overconfident)

Review questions 1. What is transition and what are the three transition goal areas?

2. What is advocacy?

3. What are the four keys to being a good self advocate?

4. What are the DO’s and DON’Ts of advocacy?

5. What questions should you ask your teacher and others about your IEP and transition plan?

6. How do you find supports you need?

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Phase Three: EMPOWER YOURSELF!

Developed by youth for youth

1st Edition July 2008 PYLN PYLN personal stories

Learning empowerment the tough way: Everett’s story

I only really started university. I could not believe I was paying attention to this going to get my chance to play basketball transition stuff my in college! That is all I cared about; I freshman year of college. thought school work would take care of Up until that point I itself like it always did. knew I had an IEP while I was in high As one can imagine I was very school and that people had meetings excited about move-in day. I did not about me. My mom took care of all the think anything could ever go wrong. ―adult‖ things, and she was darn good at However, I can remember my first night it. So, I felt like I had no reason to in my dorm room, I laid down to go to worry about my education and supports sleep and something in my heart just did since adults took care of these for me. not feel right. I can remember I had one dream growing up, that thinking…‖Why do I feel so empty inside, was to play wheelchair basketball at this is not how I am supposed to be Edinboro University of Pennsylvania. feeling right now.‖ Months went by and I When people would ask me what I was was still feeling down. I just thought I going to do when I grew up I didn’t say I was homesick, and that I would soon get wanted to be a teacher or a over it. sportswriter. I said I wanted to play When winter came we got a lot of wheelchair basketball at Edinboro snow, and getting around campus in a University. School was not a priority, my wheelchair was not exactly easy for me. entire life revolved around my friends I didn’t go many places and I quickly got and getting better at basketball. very depressed about my life, and about My hard work in basketball did being at Edinboro. My first semester I pay off; I was recruited for the had 1.8 GPA and did not attend many wheelchair basketball team at Edinboro classes regularly and didn’t hang out with University the summer of my junior year many people, and 2nd semester started of high school and was accepted into the exactly the same way. Until one of my

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friends on the basketball team said: financial aid worked. I had to talk to my ―What’s wrong with you?‖ You are not OVR counselor about maintaining my the same Ev I knew before you got services. I never did any of the talking here.‖ A red flag went off in my head, I on my own. It was scary. I got a crash didn’t even mention to anyone that I was course in transition. feeling depressed. It was obvious to I came home for the summer and people who knew me. The next day I planned to attend a community college went to any University employee that I for a year. However, I did not have a car thought could help me, and told them or a job. I had to call the bus company that I was depressed and needed to and employers on my own. I didn’t realize transfer to another school. how hard it was for people in Now came the hard part: telling wheelchairs to get accessible my parents that I wanted to transfer to transportation if they did not live in the another school. I called my mom and told city. her how I was feeling. For lack of a My parents made a conscious better word she freaked out. She asked: effort to make me do everything on my ―Why would you want to do something own. It was hard for them to watch me crazy like that? This was your dream.‖ I struggle. I think that it helped me learn told her that basketball was no longer what being an adult really means, and my dream. Having a family was now my that you can’t expect your parents to dream, and that I knew that staying at take care of things that are about you Edinboro was not going to help me and your future. I can say very proudly achieve my dreams. My mom told me she that I will soon be graduating from felt I was making the wrong decision but college with the hopes of becoming a what if I really wanted to leave I had to high school teacher. I hope my story can figure out what the next step was on my teach you a few things own.

This is when I realized I had no clue what steps to take to transfer to another school. I had no idea how my

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Empowerment leading to college: Rachel’s story

Every kid at some point Board to approve my accommodations. thinks about life after There was just one problem, my high school. Either they counselor would not sign the papers I are going to go onto needed to send to College Board, college, go right to work, because she thought I didn’t use the or attempt to reach their independent accommodations I was requesting often living goals. I knew from a very young enough on tests. She was extremely age that college was going to be my wrong. I used my accommodations all the choice. time

My dream has always been to Needless to say I was a little become a teacher. One of the first irritated. Simply because all my teachers steps of getting into college is to take knew I used my accommodations, and the the SAT’s, a test that takes about half one person who is supposed to be helping of the day. I have a learning disability me get in to college didn’t know anything (LD for short) and the SAT would have about me and how much getting accepted taken me the whole day to finish if I into school meant to me. I left school didn’t have accommodations. that day determined to find my own solution to this little problem. Knowing myself and how my disability effects me on tests, I knew I I went home and told my mom, we had to tell my guidance counselor to needed to schedule a meeting with my make sure I had all the accommodations guidance counselor. My mom being the I typically used while taking a test. advocate on my behalf called the school When I take tests, I am allowed to have right away and asked for an appointment. extended time and a person who reads Minutes later my telephone rang. It was the test to me. my counselor telling us that she felt we did not need to have a meeting. At first I went to my guidance counselor mom and I agreed the meeting was not thinking that getting my accommodations necessary. Then when we were in the car for the SAT would be simple. I came to after the call to cancel the meeting, we find out that I was wrong. We had to fill began talking about the whole SAT mess. out paper work and wait for College PYLN TOOLKIT 100

Days after my mom called the school my I was able to take my SAT on a guidance counselor walked into the level playing field because I was able to library and saw me taking a test using my take charge and tell people exactly what accommodations…isn’t it ironic, don’t you I need to succeed. It makes me feel think? Soon after she saw me in the good to know that I have learned how to library, I got the papers saying that I advocate for myself and not back down! was granted my accommodation request. NEVER BACK DOWN!

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What is empowerment?

Empowerment is a process which helps people gain power and control of their life. People who are empowered have the knowledge and ability to lead.

Empowerment includes:

 Having decision-making knowledge and power  Having access to information and resources  Having a range of options from which you can make choices  Positive outlook on being able to make change  Increasing one's positive self-image and overcoming stereotypes or discrimination Why is empowerment important?

 To be able to make decisions about your life  To show others that you have control of your own life  To take responsibility for your own actions  To be true to yourself

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Help is out there

Drawing the Line

There is a fine line between support and control. Because people with disabilities often need more support to do things than other people, it may be difficult for people to figure out the difference between support and control.

Support- providing assistance which is directed and guided by a person with a disability to do the things that he or she has decided they want to do.

Control- providing assistance to a person with a disability which is not directed or guided by that person or when decisions are made for that person and not directed by him or her.

Youth with disabilities must have the right to direct their care and make decisions about their life.

How do you know when someone is controlling you?

 They don’t ask you what you want  They speak for you  They do things without asking you if it is ok with you.

So what do you do when someone has crossed the line from support to control?

 Find out if they realize that they are controlling you.  Ask them why they are controlling you  Explain to them that you have ideas too and that you would like them to respect your ideas  If they do not change their behavior you may want to ask another person to intervene (assist in helping you get rid of the problem)

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Tips for getting services

As a person with a disability, you will be eligible for assistance from a service provider. With this sheet the PYLN hopes to give you tips to help contact the services that can help you best. We will also give helpful questions to ask any service provider you may come in contact with along the way. When you turn 18, agencies expect you to speak for yourself, not your parents. For example, if you request accommodations in college or training after high school, it is up to you to talk to the college since they will not talk with your parents.

Things you should know for filling out an application for employment or services

 Your full name (middle name included)  Social Security number (Try to memorize)  Your official disability diagnosis and when it happened  What accommodations you need and/or are asking for  Medical history (blood type, surgeries, illnesses, shots, and medication allergies, and other allergies)  Employment history (where and when you worked)  Education history (How much school you have finished so far)  What is you or your family’s household income  Your parents’ names (also names before they got married)  Addresses (past and present)  County or township you live in  Phone numbers (past and present)  Have an emergency contact and phone number  References (people who know you well-NOT YOUR PARENTS)

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The things you will need A copy of your:

 Valid Photo ID (Driver’s License or state identification card or Visa)  Social Security Card  Birth Certificate  Insurance Cards (if necessary)  Recent Pay stubs (if necessary)  At least 2 letters of recommendation

Questions you can ask an agency or service provider

1. What kind of services does your agency provide?

2. Where does your funding come from? (In other words: where do they get their money)

3. How does your agency help youth who are transitioning?

4. What can I expect in your application process and how long will it take?

5. Who can I contact if I don’t get the services we agreed upon?

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Becoming empowered

How to get empowered

Earlier, you read about the definition of empowerment. Now, let’s look at some of the ways that you can become more empowered. Supportive people in your life can be a big help. As we mentioned earlier, these can include people like family members, friends, teachers, or counselors. But it’s also important to realize that there agencies out there which can help you to become more empowered as well. The agencies which might help you will depend a lot on which outcome areas you choose after high school.

Some of these agencies may include:

 Statewide Independent Living Councils o Contact them at www.pasilc.org or call them at 717-364-1732  Centers for Independent Living o Find your local CIL a www.pasilc.org  Pennsylvania Youth Leadership Network o Email them at: [email protected]  National Youth Leadership Network o Contact them at: www.nyln.org

If one of your post school outcomes is independent living, then a center for independent living, or CIL, might be what you need to become empowered. CILs are located in different parts of the state, and their purpose is to teach people with many different kinds of disabilities the skills that are needed to live independently. Once you learn the skills you need, your confidence in your ability to reach your goals will increase.

If your outcome goals include further education or training, it’s very important to arrange a meeting with someone at the office for students with disabilities at your college or training center. This office will be called by different names at different places, but its purpose is to make sure that students with disabilities receive the accommodations they need in order to do their school work. It’s important to find a school or training center whose staff at the office for students with disabilities is

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willing to work with you in order to make sure that you receive all of your accommodations.

If your goals include employment, then you should get involved with your local Office of Vocational Rehabilitation, or OVR. The purpose of this agency is to help people with disabilities find jobs. They may help you to get financial aid for school or pay for you to receive independent living training if they feel that this will help you find a job more easily. They also may provide job coaches, and can help you to find out what job is right for you if you are not sure.

If you qualify, you may want to get support from your local mental health or mental retardation agency. They may be able to help you achieve your goals of independent living and employment.

This is just a brief look at some of the agencies which can help you to feel empowered. It’s important to remember that it’s up to you to contact these agencies, and to have an idea of what your goals might be.

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Worksheet: what can these youth do to empower Activity themselves?

Scenario 1: Tommy Tommy, 17, is a senior in high school and will be graduating soon. He wants to move into an apartment after high school and attend a trade school. He was born with muscular dystrophy and uses a power wheelchair. His parents think he’ll never be able to do anything because of his disability, despite him being an A student. They tell him he can’t ever live a normal life and when he turns eighteen, they’re placing him in a nursing home. What can Tommy do? Tommy’s parents are a harsh example but even well meaning family members can be barriers to your independence due to stereotypes. It might be difficult but Tommy must be proactive and go to a school counselor and get connected with the agencies that can assist him with his goals. Such as an office of vocational rehabilitation who can assist him with school and employment. Tommy might even go to a Center for Independent Living, which advocates for people with disabilities civil rights. Whatever he does, he must do something because his independence and dreams will never happen if he silently sits saying nothing.

In the next two scenarios think about what the people should do to advocate. Please use the other sections of this toolkit to help you answer the questions.

Scenario 2: Sara Sara, 17, was injured as a child in a diving accident and now uses a wheelchair. Over the summer her family moved to a new town. Sara recently got her driver’s license and plans to drive to school when it starts. She decides to go check out the school. When she arrives she notices that there is no accessible parking or signage to an accessible entrance.

What can Sara do?

Hint: see ADA Title II: Public Services PYLN TOOLKIT 108

Scenario 3: Frank

Frank, 22, has cerebral palsy and just been hired by a company as one of its computer programmers. However, to be efficient at his job he needs some low cost accommodations so he can use his computer. He needs a point it II joystick instead of a mouse and a smaller keyboard. His boss is unwilling to buy the equipment Frank needs.

What can Frank do?

Hint: see ADA Title I: Employment

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PYLN personal stories

College: Josie’s story

It is hard enough when to my dorm and classrooms, and you don’t know what accommodations for in-class activities. services you need for Preparing to go to college took about two college or how to get years, but it was worth it. them. But it’s even Even with all of the questions harder when no one else about how I was going to live knows either. Getting services for going independently, I was able to not only to college was a time consuming and survive, but thrive at Geneva College. I ―trial and error‖ process. Although I had 24 hour care from nurses and have had excelled throughout high personal attendants (who were fellow school academically, I had no idea what classmates and friends from Geneva.) I all I would need to be able to live learned how to manage my own health independently in college. I was a care, accommodations, and needs during nineteen year old girl with a physical my four years in college. I was class disability called Muscular Dystrophy. president for two years in a row, and Because of my disability, I needed a graduated Suma Cume Laude in May wheelchair or scooter, a computer for 2007. I discovered that having a writing, a ventilator during rest, and a disability allowed me to understand the service dog. Up to graduating from high experiences of many individuals, and I school, I had lived with my parents and was able to share my experiences with they had provided me with everything I others. Now, I am a first year graduate had needed. Having both a physical and student, living in Pittsburgh and health-related disability, moving to the attending the University of Pittsburgh. ―real world‖ was not going to be easy. I With faith, hope, and perseverance, had to find services for 24 hour goals can be met, and dreams can attendant care and nurses, accessibility become reality.

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Advocacy in action: Mike’s story

I was born with cerebral what my life could be. Through my 10 palsy on April 26, 1981, years of involvement at TRIPIL I have and ever since my life met a lot of people with disabilities who has been filled with have taught me not to settle for the trials, troubles, and triumphs. But for stereotypes that others have for people the purpose of this toolkit on transition with disabilities and to chase my dreams. I’ll speak about my transition from I also learned that I have a voice and I dependence to independence. I was 17 need to use it to fight for my right to years old when I got hooked up with my live independently. At 27 years old I now local Center for Independent Living in work at TRIPIL as a civil rights Washington PA called Tri-County specialist advocating for people with Patriots for Independent Living disabilities and empowering them with (TRIPIL). The people who worked there the same knowledge TRIPIL equipped me had disabilities just like me, and opened with over the years so they too can be my eyes to the truth that our lives are independent. I have been an advocate, worthwhile to live. We can go to college, youth pastor, preacher, and the greatest we can get jobs, we can date or get title I have is husband. My marriage to married, and do anything else we set are my wife Robin is just another proof that minds to. TRIPIL taught me to do things people with disabilities can live like for myself and not to depend on my everybody else. People always told me family or other agencies to do that because of my disability I wouldn’t everything for me. I grew up thinking have a job, no one would love me, or my that I wasn’t going to be much because life wouldn’t mean much. But my life so of my disability but my introduction to far has been blessed. Don’t ever let TRIPIL was the beginning of my other’s views of your disability stop you. understanding that there are no limits to

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In Summary Phase Three: Empower Yourself! Reality check

What is empowerment and why is it important? Empowerment is a process which helps people gain power. People who are empowered have the knowledge and ability to lead.

Empowerment includes:  Having decision-making power  Having access to information and resources  Having a range of options from which you can make choices  Positive outlook on being able to make change  Increasing one's positive self-image and overcoming stereotypes or discrimination

Why is empowerment important?  To be able to make decisions about your life  To show others that you have control of your own life  To take responsibility for your own actions  To be true to yourself

Self awareness and self assessment It’s important to evaluate your skills and know what your strengths, weaknesses and coping skills and accommodations can be to support you.

Help is out there There are agencies out there to help you be empowered. Make the connection!

Drawing the Line There is a fine line between support and control. Because people with disabilities often need more support to do things than other people, it may be difficult for people to figure out the difference between support and control.

It’s your IEP -- you need to be involved! An IEP is a set of forms that summarizes what your disability is, and the needs you have. It also lists the accommodations you receive and what your goals are for high school and after high school. Since your IEP is all about you, you should play a key role in creating your IEP. PYLN TOOLKIT 112

GOLDEN RULE: YOUR IEP IS ALL ABOUT YOU! SPEAK YOUR MIND SO YOU GET WHAT YOU REALLY WANT

Tips for getting services As a person with a disability, you will be eligible for assistance from a service provider. Use the list of questions to ask any service provider you may come in contact with along the way.

Becoming empowered Earlier, you read about the definition of empowerment. Now, let’s look at some of the ways that you can become more empowered. Supportive people in your life can be a big help. Learn about how youth can empower themselves!

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Activity Review Questions

1. What is empowerment and why is it important?

2. What are your strengths, weaknesses and coping skills and accommodations?

3. What agencies can help you be empowered?

4. What is the difference between support and control?

5. What questions can you ask to get the support you need from agencies?

6. What steps will you take to be empowered?

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Thank You! We would like to thank all the organizations and individuals who have supported the Pennsylvania Youth Leadership Network for the past three years and the production of this Toolkit.

The Pennsylvania Department of Education has been a major supporter of the PYLN and we appreciate all of the support, without it we would not be here.

The Pennsylvania Training and Technical Assistance Network (PaTTAN) has been the primary supporter of the PYLN since it began and we cannot show how much we appreciate the help and support through the ups and downs of the group.

Finally thank you to all of the families, adult allies, and YOUTH who have been in the trenches of transition doing all of the work. You are amazing individuals and we know that you all have the knowledge.

In summary, this is our first attempt at the Toolkit and we plan to keep changing it and adding information to meet your needs. So if you want to have a say, please email the PYLN at [email protected].

Since we plan to continually update the Toolkit, you can find the latest version online. It’s as simple as going to this website: www.sharedwork.org/patransition. You do have to register to use the site, but after that you can go to the site and log in with your email address and password. The page you want to click on in the left side is called the PYLN Secondary Transition Toolkit. Secondary Transition Road Map Secondary Transition is the process of preparing students for adult life after they leave high school. Transition planning begins at age 14, or younger if determined appropriate by the IEP team, as students explore and discover what they want their post-school outcomes to be through career awareness exploration activities. The transition process continues through high school as academic instruction and community experiences support these outcomes. The entire process is based on the individual student’s needs, taking into account the student’s strengths, preferences, and interests. Transition can be thought of as a bridge between school programs and the opportunities of adult life, including higher education or training, employment, independent living and community participation. Educators facilitate students’ successful transition by guiding them through the following activities, thus preparing students to cross the bridge into adult life.

Conduct Assessment (Identify interests, preferences, Identify Post-School Goals: Federal law requires “appro- aptitudes, abilities, and skills) priate, measurable postsecondary goals based upon age The Division on Career Development and Transition appropriate transition assessments related to training, (DCDT) of the Council for Exceptional Children defines education, employment, and, where appropriate, transition assessment as an “…ongoing process of col- independent living skills” (§300.320[b][1]). lecting data on the individual’s needs, preferences, and interests as they relate to the demands of current and Characteristics of Post-School Goals: future working, educational, living, and personal and social environments. Assessment data serves as the • Are based on student’s assessment data common thread in the transition process and forms the • Identify where student will be AFTER high school basis for defining goals and services to be included in the Individualized Education Program (IEP).” Transition • NOT intended to describe events that occur IN assessments can be formal or informal. Formal assess- high school ments typically involve using a standardized procedure • NOT the same thing as an IEP annual goal for administering, scoring, and interpreting an assess- • Used for planning course(s) of study ment. For example: adaptive behavior/daily living skills assessments; general and specific aptitude tests; interest • Lead to measurable annual IEP goal(s) inventories; intelligence tests; achievement tests; career • Address education/training, employment, maturity or employability tests; and self-determination independent living assessments. Informal assessments could be interviews and questionnaires, direct observations, curriculum-based • Are observable, countable assessments, or environmental analyses. • Link to agencies/community to support outcome

Develop Annual IEP Determine Present Levels of Academic Achievement & The IEP team (made up of the student, parents, teachers, Functional Performance administrators, and related service providers) writes the Present levels of academic achievement refer to a stu- Individualized Education Program (IEP). The team must dent’s performance in his or her current educational discuss what the student would like to do when high program within the general education curriculum school is completed. These plans must include the kind including reading, writing, and math. Functional of education or training the student will receive, the performance is related to activities of daily living, such kind of job the student might have, where the student as hygiene, dressing, social skills, basic consumer skills, will live, and how the student will spend time in the ability to access public transportation, and community- community. based instruction. Characteristics of Present Levels: • Can occur both in school and in the community • Include statements of academic and functional • Combined from first year to final year of transi- skills as they relate to post-school goals tion planning = coordinated set of activities • Provide the baseline for development of annual goals Create Measurable Annual Goals: Measurable Annual • Identify student strengths and prioritize needs IEP Goals are measurable estimates of expected student outcomes in an academic year based on the • Are measurable and observable student’s present levels of academic achievement • Guide development of other areas of the IEP and functional performance and anticipated rate of • Describe effect of the student’s disability on learning. Measurable Annual Goals are based on performance the student’s present levels and should lead to the achievement of the post-school goals. Each measur- Select Courses of Study: Courses of study refer to the able goal must include the student’s name; describe list of academic courses that the students will com- the condition in which the student will perform plete each year that support the achievement of their the behavior; clearly define the behavior (what the individual post-school goals. student will do) in measurable, observable terms; and indicate the performance criteria for each goal Characteristics of Courses of Study: (the level the student must demonstrate for mastery, how consistently the student needs to perform the • Support post-school goals skill(s) before it’s considered “mastered,” and over • Focus on improving academic and functional what period of time the behavior must be observed achievement at the level of mastery.) • Facilitate movement from school to post school by aligning curriculum with identified transition Conduct Progress Monitoring and Review Progress outcomes Progress monitoring is a scientifically-based practice • Should promote graduation by meeting district that is used to assess students’ academic performance standards and evaluate the effectiveness of instruction. It involves collecting and analyzing data over time, • Combined from first year to final year of transition to determine if classroom instruction is meeting planning = coordinated set of activities the needs of students. Choose Related Activities (Transition services, activities, and agency linkages): Transition services and activities Provide a Summary of Academic Achievement and refer to the list of related activities that students will Functional Performance complete each year that support the achievement IDEA 2004 requires that local school districts of their individual post-school goals. The person(s)/ provide a Summary of Academic Achievement and agency responsible are those key people, businesses, Functional Performance (SAAFP) to students with governmental and private agencies, educational staff, disabilities who are exiting high school. The SAAFP and organizations that together promote students’ contains a summary of the student’s academic and pursuit of successful outcomes during the transition functional performance, as well as recommendations process. on how to assist the student in meeting post-school goals. The SAAFP should clearly state what students Characteristics of Transition Activities and Services: need to do to achieve their post-school goals. It • Are action steps should also help students to identify needed supports to achieve their post-school goals, to articulate • Occur during the current IEP individual strengths, and to better understand the • Lead to the achievement of post-school goals impact of their disabilities as they enter adult life. For students who are 14 years of age or older (or younger if determined appropriate Secondary Transition Road Mapby the IEP team), a transition plan must be developed that includes appropriate- mea surable postsecondary goals related to training, education, employment, and when appropriate, independent living skills.

CONDUCT Assessmen t (Interests/Preferences)

If the student’s Provide Summary of interests change Academic Achievement and Functional identify or there is a Performance Post school need to change Goals the student’s program, go back to assessment.

CONDUCT Assessmen t (Aptitudes/Abilities/Skills)

Ready to Graduate DETERMINE Presen t CONDUCT Levels of Academic progress Achievement and monitoring DEVELOP Functional and REVIEW ANNUAL IEP Performance PROGRESS ACHIEVE POST-SCHOOL If the student is making GOALS progress and there is no need to change the program, continue the transition process as the student prepares for graduation.

SELECT COURSES CREATE OF STUDY and MEASURABLE choose related Annual Goals AND services and Short-Term activities Objectives 4/09 - Fact Sheet -

Supplementary Aids and Services

Definition and Purpose:

“Supplementary aids and services means aids, services, and other supports that are provided in general education classes, other education-related settings, and in extracurricular and nonacademic settings, to enable children with disabilities to be educated with nondisabled children to the maximum extent appropriate in accordance with §300.114 through §300.116.” (34 CFR 300.42)

The purpose of providing supplementary aids and services is to support students with disabilities as active participants with nondisabled peers as well as to enable their access to the general curriculum. To that end, supplementary aids and services include modification to the general curriculum and [a child with a disability is not removed from education in age-appropriate regular classrooms solely because of needed modification in the general curriculum]. (34 CFR 300.116 (e))

Full Range of Supplementary Aids and Services

34 CFR 300.114 (ii) states that, “Special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs ONLY if the nature or severity of the disability is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” [emphasis added]

Supplementary Aids and Services Should Be:

n Available to all students who need them. n Designed to provide meaningful educational benefit. n Provided in a manner that avoids stigmatizing students (Gaskin Settlement Agreement, 2005).

There are an infinite number of possible supplementary aids and services to be considered and implemented by Individ- ualized Education Program (IEP) teams. Court decisions have required school districts to make a concerted and good faith effort to use supplementary aids and services to address behavioral issues in the general classroom. The provision of positive behavioral interventions, strategies, and supports is designed to foster increased participation of children with disabilities in general education environments or other less restrictive environments, not to serve as a basis for placing children with disabilities in more restrictive settings.

It is important that IEP teams contemplate educational placement in the general education classroom with the provision of supplementary aids and services as needed.

One framework that may assist IEP teams in considering the full range of supplementary aids and services includes four categories of supplementary aids and services for consideration: Collaborative, Instructional, Physical, and Social-Behavioral (Etscheidt & Bartlett, 1999). The chart that follows provides illustrative examples for each of the categories. The Oberti decision includes reference to four specific supplementary aids and services that Local Education Agencies (LEAs) must consider: modified curriculum, teacher training, effective behavior support, and provision of an aide, if necessary (Oberti v. Board of Education of the Borough of Clementon School District, 995 F.2d 1204 (3rd cir.1993)). Framework for Considering the Full Range of Supplementary Aids and Services (SAS)

Category Examples

Collaborative • Scheduled time for coplanning and team meetings • Instructional arrangements that support collaboration (e.g., coteaching, Adults working together to paraeducator support) support students • Professional development related to collaboration • Coaching and guided support for team members in the use of assistive technology for an individual student • Scheduled opportunities for parental collaboration • All school personnel collaborate in the development and delivery of SAS

Instructional • Providing modified curricular goals • Providing alternate ways for students to demonstrate learning Development and delivery of • Providing test modification instruction that addresses diverse • Providing alternate materials and/or assistive technology (e.g., materials learning needs on tape, transcribe text into Braille, large print, alternate computer access) • Providing instruction on functional skills in the context of the typical routines in the regular classroom • Changing method of presentation • Using reader services • Providing research-based supplementary materials • Providing instructional adaptations (e.g., preteaching, repeating directions, extra examples and nonexamples)

Physical • Furniture arrangement in environments • Specific seating arrangements Adaptations and modifications to • Individualized desk, chair, etc. the physical environment • Adaptive equipment • Adjustments to sensory input (e.g., light, sound) • Environmental Aids (e.g., classroom acoustics, heating, ventilation) • Structural Aids (e.g., wheelchair accessibility, trays, grab bars)

Social-Behavioral • Social skills instruction • Counseling supports Supports and services to increase • Peer supports (e.g., facilitating friendships) appropriate behavior and reduce • Individualized behavior support plans • Modification of rules and expectations disruptive or interfering behavior • Cooperative learning strategies

References Burns, Edward. (2003). A Handbook for Supplementary Aids and Services. Springfield, Ill: Charles C. Thomas. Etscheidt, S. and Bartlett, L. (1999). The IDEA Amendments: A Four Step Approach for Determining Supplementary Aids and Services. Exceptional Children, 163-74. This fact sheet provides an overview of a topic related to obligations contained in the Gaskin Settlement Agreement and should not be relied upon for a complete understanding of the terms of the Settlement Agreement.

• View the entire Settlement Agreement at: www.pde.state.pa.us/special_edu/lib/special_edu/Settlement_Agreement.pdf. • For more information for families and advocates of children with special needs, contact The Special Education ConsultLine: 1-800-879-2301 (Voice/TTY/TDD) or view additional information at: http://parent.pattan.net.

10/08 SECONDARY TRANSITION Summary of Academic Achievement and Functional Performance

Background

Many students with disabilities graduate from high school and attempt to transition to adult life without the documentation they need to access appropriate adult services in a timely manner. They may or may not have been significantly involved in their transition assessment and understand the full implications of the vocational evaluation and work experiences they have had. Consequently, these students face the difficult task of navigating through the complex systems of adult service providers.

In response to these problems, the reauthorization in 2004 of the Individuals with Disabilities Education Act (IDEA) required that local school districts provide a Summary of Academic Achievement and Functional Performance (SAAFP) to students with disabilities who are exiting secondary school. The SAAFP contains a summary of the student’s academic and functional performance, as well as recommendations on how to assist the student in meeting postsecondary goals. The language as stated in IDEA 04 regarding the SAAFP is cited below:

For a child whose eligibility under special education terminates due to graduation from secondary school with a regular diploma, or due to exceeding the age of eligibility, the local education agency shall provide the child with a summary of the child’s academic achievement and functional performance, which shall include recommendations on how to assist the child in meeting the child’s postsecondary goals. 300.305 (e)(2)(3)

Rationale

Special and regular education professionals accumulate a wealth of information regarding their students, including: life goals, preferences and interests, functional and academic strengths and needs, needed accommodations, strategies for success, etc. In the past, much of this information simply was not used, or was not presented in a useful and current format for use in the adult world.

We know effective practices support the fact that the completion of the SAAFP is not the beginning of a student’s post-school transition planning, but the culmination of a thoughtful and comprehensive transition plan that was initiated in the later stages of a student’s middle school career or at the latest, the early stages of high school.

There are a number of reasons why the summary of performance report is a good idea. For one thing, it can provide a type of summative evaluation that should lead to better transition planning. This should result in increased family, school, and community dialogue that will provide greater continuity in obtaining transition services for students with disabilities. This will help close the gaps that might currently exist in the planning and implementation process. The SAAFP is most useful when linked with the IEP process, and the student has the opportunity to actively participate in the development of the SAAFP.

Usefulness

By providing recommendations on how to assist the student in meeting his or her postsecondary goals, the SAAFP report can also serve as a “bridge” that addresses the next steps necessary to complete the transition process that has been ongoing for several years. It should clearly state to students what they need to do to continue to work toward realizing their goals after their high school program has ended.

The SAAFP report should lead educators in preparing students with disabilities to become self-advocates. The SAAFP serves as a means to transfer the responsibilities of securing employment, training, or education, living arrangements, and support services to the student, because the student will need to be prepared to assume these responsibilities.

The SAAFP should be based upon age-appropriate transition assessments and be completed over time with the student. The SAAFP then becomes a valuable teaching tool. Starting in the freshmen year, students with disabilities could begin creating as part of their transition portfolio a working document that they will continue to build on all through high school. This could be further streamlined if the SAAFP is part of a general education initiative or part of a portfolio development.

A Student’s Document

Because the SAAFP provides the student with information about his or her present level of performance at the first year of life after high school, developing the SAAFP as part of an integrated and deliberate portfolio process could teach some students the skills they need to update a less formal version of the document periodically beyond high school. The SAAFP should:

• Be completed during the final year of a student’s high school education • Be useful and relevant • Summarize individual student abilities, skills, needs, and limitations • Provide recommendations to support successful transition to adult living, learning, and working • Include input from a number of individuals including the student, parent, special education teacher, regular education teacher, school psychologist, related services personnel or agency representatives • Be designed to assist the student in identifying supports in postsecondary settings, the workplace, and the community • Help the student better understand the impact of his/her disability and articulate individual strengths and needs as well as supports that would be helpful after high school

4/09 SECONDARY TRANSITION Resources • Pennsylvania Youth Leadership Network (PYLN) Documents PYLN Resources (English Only) PYLN Secondary Transition Toolkit (English Only) PYLN Secondary Healthcare Transition Toolkit (English Only) Connect to the PYLN website: http://payouthleaders.ning.com

• Secondary Transition: What Families Need to Know

• Secondary Transition: What Educators Need to Know

• Secondary Transition: What Administrators Need to Know

• Secondary Transition Road Map

• Secondary Transition: Getting it Right in the IEP

• Secondary Transition: Summary of Academic Achievement and Functional Performance

• The Least Restrictive Environment: What IDEA Says About LRE

• Supplementary Aids and Services Fact Sheet

• Secondary Transition: Frequently Asked Questions

• Transition Health Care Checklist

• Pennsylvania Secondary Transition Conference Informational Flyer

Para la version espanola de estos documentos satisfaga chascan aqui. Notify [email protected] if this CD appears to be defective.

11/09 SECONDARY TRANSITION What Administrators Need to Know What is secondary transition? Secondary transition services can be thought of post-school activities, including postsecondary as a bridge between school programs and the education, vocational education, integrated opportunities of adult life. In the federal law employment (including supported employment), (IDEA 2004) it is defined as “a coordinated set continuing and adult education, adult services, of activities for a child with a disability that is independent living, or community participation.” designed within a result-oriented process, that is Secondary transition activities facilitate the focused on improving the academic and func- change from special education services provided tional achievement of the child with a disability by the local school district to adult life for youth to facilitate the child’s movement from school to with disabilities. What does transition planning accomplish? Studies have shown that a large number of required by federal law (IDEA 2004) and by students receiving special education services do Pennsylvania regulations (Chapter 14). Transition not pursue education or training beyond high planning helps students and their families think school and are not as successful as adults in about the future and jointly plan with school the workplace when compared to the general and supporting agencies to make the school population. Transition planning and programming experience contribute directly to achieving helps to close this gap. Transition planning is necessary skills for a successful adult life.

When does it begin? As part of the Individualized Education Program that support the student’s post-school outcomes (IEP) process, transition planning (including a in the areas of education/training, employment, course of study) must be addressed in the IEP and independent living. Transition planning may of a student in late middle school or early high begin earlier if the IEP team decides that such school. The course of study is a list of the planning is appropriate. rigorous academic classes, activities, and services How do we determine what a student needs for good transition programming? Transition planning begins with good assessment. students to participate in job shadowing or This assessment should be completed before mentoring to assess their interests, aptitudes, developing the IEP. Assessments might include and abilities. The assessment data should guide interest inventories, vocational assessments, and the transition planning. career planning tests, as well as opportunities for Who is involved in this planning? Transition planning involves the student, the prepare a student for work after school. If a family, school staff, and personnel from outside student with a disability is considering career or agencies. Career and technical education pro- technical education, a representative from that grams can be part of the transition plan to help program should be present at the IEP meeting. How important is the participation of outside agencies? In order to support the post-school outcomes of includes agencies such as the Office of the student, collaboration with outside agencies is Vocational Rehabilitation, Mental Health and crucial. If an adult and/or community agency is Mental Retardation (MH/MR) agencies, and likely to be responsible for providing a program other community agencies providing services for transition services, the school must invite an to people with disabilities. agency representative to the IEP meeting. This

What are the components of transition planning? After gathering information about the transition These include instruction, related services, needs of the student regarding where the student community experiences, the development of would like to live and work in the future, an IEP employment and other post-school adult living team meeting is held to develop a program that objectives, and if appropriate, acquisition of daily incorporates transition services and activities. living skills and functional vocational evaluation.

How can administrators support secondary transition? Administrators must be sure that their staff desired post-school outcomes. Administrators has the expertise, the programmatic and fiscal must make certain that school personnel know resources, and the time to properly assess about and can utilize appropriate assessment students, plan with families and outside instruments and techniques so that they have agencies, and implement individualized pro- adequate data upon which to base good grams that support students in achieving their transition planning.

Where can administrators get assistance in collaborating with outside agencies or help with other aspects of transition planning? Local Transition Coordinating Councils (LTCCs) agency personnel. Administrators can contact exist in many communities in Pennsylvania. They their local intermediate unit (IU) or regional provide a forum for school districts to learn more Pennsylvania Training and Technical Assistance about community agencies, find out about the ser- Network (PaTTAN) office for information and/or vices they offer, and make valuable contacts with technical assistance about secondary transition.

Resources deFur, S. H., & Patton, J. R., Eds. (1999). Transition and School-based Services: Interdisciplinary Perspectives for Enhancing the Transition Process. Austin, TX: Pro-Ed.

Storey, K., Bates, P., & Hunter, D., Eds. (2002). The Road Ahead: Transition to Adult Life for Persons with Disabilities. St. Augustine, FL: Training Resource Network, Inc.

Wehmeyer, M. L., Agran, M., & Hughes, C. (1998). Teaching Self-Determination to Students with Disabilities: Basic Skills for Successful Transition. Baltimore, MD: Paul H. Brookes Publishing Co.

For additional information, contact a secondary transition consultant at: PaTTAN – Pittsburgh Office PaTTAN – Harrisburg Office PaTTAN – King of Prussia Office 412-826-2336 or 800-446-5607 717-541-4960 or 800-360-7282 610-265-7321 or 800-441-3215 Or visit PaTTAN online at: www.pattan.net

4/09 SECONDARY TRANSITION What Educators Need to Know The transition service requirements of IDEA 2004 recognize that education can improve the post-school outcomes of students with disabilities by doing a better job of preparing students and their families for the complexities of the adult world.

Start at the beginning… When planning for a special education student’s whether formal or informal, is the beginning of transition to life after high school, educators an appropriate transition plan. should begin the journey on a solid foundation. This is best accomplished by making sure that This information should be included in the the transition planning team knows the interests, Present Levels of Academic Achievement and aptitudes, and abilities of the student in the early Functional Performance section of the years of high school. Transition assessment, Individualized Education Program (IEP).

Invite the right people… Each transition planning team is made up of individuals who will assist the student in achieving their post-high school goals. These may include, but are not limited to: • The student • Career/tech center personnel • Family members • Transition coordinator • Special education teacher • Guidance counselor • Regular education teacher(s) • Agency/community representatives Reminder: When inviting outside agencies, please provide as much advanced notice as possible! Identify the outcomes… The transition team plans for post-school outcomes. Here are some examples:

Postsecondary Education Employment Independent Living and Training • None – student expresses • Competitive employment • Access community resources no interest without support and programs without support • Student is undecided • Competitive employment with • Access community resources • Two- or four-year support and programs with family college/university • Employment training program supports • Technical/trade school • Employment in a specific • Access community resources and programs with agency • Military training career cluster such as: carpentry, retail sales, or supports • Adult education classes the food industry • Other

Independent living outcomes include recreation/leisure and residential options, as well as community participation issues such as transportation! Develop the plan… The IEP document contains a grid in which implemented during this IEP. An abbreviated list educators place information regarding the of examples of activities/services could include: transition services and activities being

Postsecondary Education Employment Independent Living and Training • Scheduling SAT • Participating in: • Training in: accommodations - in-school work experiences - pedestrian safety • Attending college fairs - community service projects - public transportation • Practicing self-disclosure - job shadowing visits - shopping/money skills • Touring program campus - work experiences - apartment living • Training in note-taking - interest inventories - recreation and leisure strategies - mentoring experiences activities • Contacting campus Offices - volunteer work - accessing community of Students with Disabilities medical services • Developing organizational - healthy lifestyles skills • Registering to vote

Reminder: Include the courses of study and other educational experiences in which the student will be engaged! See the big picture… The grid covers the period of time the IEP is in coordinated set of activities in the student’s file. effect. However, IEP teams must also document Another way might be to add to the grid each a multi-year planning process. This step-by-step, year so that the record of the coordinated set of year-to-year plan leading students from high activities is documented yearly – resulting in the school to their post-school outcomes is called final IEP containing all activities completed the coordinated set of activities. One way to during the student’s school career. document the coordinated set of activities might be to keep the grids from year to year. Upon Reminder: Transition plans should be tailor- graduation, the IEP team would then have a made for each student!

Resources Brinckerhoff, L. C., McGuire, J. M., Shaw, S. F. (2002). Post-secondary Education and Transition for Students with Disabilities. 2nd Ed. Austin, TX: Pro-Ed.

Sands, Deanna J. (1999). Best Practices: A Study to Understand and Support Student Participation in Transition Planning. Denver, CO: University of Colorado at Denver. ([email protected])

Wagner, M., Newman, L., Cameto, R., Garza, N., and Levine, P. (2005). After High School: A First Look at the Postschool Experiences of Youth with Disabilities. A report from the National Longitudinal Transition Study-2 (NLTS2). Menlo Park, CA: SRI International. [Online]. Available: www.nlts2.org/pdfs/afterhighschool_report.pdf.

6/09 SECONDARY TRANSITION What Families Need To Know The challenge is to keep all students in school and engaged in meaningful educational experiences so they will be prepared for postsecondary education/training, employment, and independent living.

Effective transition planning… …depends on looking at your son or daughter as he or she is today, and imagining what services and supports will be needed to achieve his or her dreams tomorrow.

Research shows that:

• School administrator support and solid • Student, family, and school factors all influence communication among the student’s team student involvement in transition-related members (including educators, family members, services. the student, and perhaps community agency personnel) lead to effective transition planning. • Students with disabilities are more actively involved in their own transition-related activities • Students are more actively involved in when they receive special education services in transition-related activities when their school general education classes. provides them with frequent opportunities to plan, express, and actively pursue their goals, • Students are more likely to become employed as well as chances to evaluate progress and after they complete school if they had work adjust their actions accordingly. experience during high school.

What families can do to support their son or daughter

• Talk with your son or daughter about the • Help your child learn about his or her disability future and what he or she wants it to be. Help and how to ask for the supports he/she needs. your child identify his or her own strengths. Provide opportunities for your child to express Information about your child's interests and his or her desires, learn his or her strengths, abilities is important. Make sure your son or and to advocate for his or her needs. These daughter's Individualized Education Program skills are important in both employment and (IEP) is developed. Your son or daughter needs postsecondary education settings. to have opportunities to plan for himself or herself even if it means that he or she sometimes • Offer information and assistance to your son or chooses incorrectly. Your child will be making daughter’s IEP team when they are determining many choices after graduation and needs your child’s strengths and needs. You are a practice in weighing options available to him critical member of this team. . . no one knows or her socially and educationally. your son or daughter as well as you do. Remember that you have the right to invite others to IEP agencies that provide services to support stu- meetings who have a special knowledge about dents including counseling, job coaching, and your son or daughter. Help the IEP team to job training. The guidance counselor, the high develop annual goals leading toward desired school principal, and families of other students post-school outcomes. with disabilities are good resources for this information. Contact your Local Task Force or • Teach your son or daughter social skills such parent groups for information. Check the as how to accept constructive criticism, how Procedural Safeguards Notice for names of to be courteous, and how to respond appro- other organizations and their phone numbers. priately to authority. • After graduation, available supports will • Create occasions for your child to be socially probably be different from those your child active in your community, provide opportunities experienced during high school. This is to make purchases, to use public transportation, because you son or daughter was "entitled" to and to do his or her own banking. certain services while in school, and they must become "eligible" for services after school. • Help your child learn job-related skills such as Learn the difference between the two and punctuality, dressing appropriately, and being what you need to do by talking to those interested in doing a good job. organizations mentioned above.

• Find out everything you can about transition • Maintain copies of all school records and services in your school district. Know your rights medical information. Keep lists of all contacts and responsibilities and keep abreast of laws, that you make with other agencies such as the regulations, and policies regarding transition Office of Mental Health/Mental Retardation and adult services. Learn about community and the Office of Vocational Rehabilitation.

Resources Brinckerhoff, L. C., McGuire, J. M., Shaw, S. F. (2002). Post-secondary Education and Transition for Students with Disabilities. 2nd Ed. Austin, TX: Pro-Ed.

Parent Education Network. (2005). Transition: The Bridge to Adult Living - A Guide for Parents. York, PA: Parent Education Network. ([email protected])

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