Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 92 January 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

Written by a parent, this article provides valuable tips for advocating within the health care system and partnering with professionals to assure you are heard: http://articles.complexchild.com/nov2009/00169.html

Disability Scoop offers this “How-To” guide to Self-Advocacy: http://www.disabilityscoop.com/2009/07/21/self-advocacy/4203/

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

If you are considering appealing insurance coverage denials there are several strategies that can bolster your case. An article from the Wall Street Journal offers some tips: http://online.wsj.com/article/SB122230334120773621.html

This article provides practical guidance to those who are utilizing COBRA coverage on steps to take when the federal COBRA subsidy expires: http://www.nytimes.com/2009/12/12/health/12patient.html

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

This article from the American Society for Deaf Children examines IDEA regulations regarding the use of assistive devices, including cochlear implants: http://www.deafchildren.org/resources/31_What's%20the%20IDEA%20- %20AT.pdf

ProjectIDEAL (Informing and Designing Education for all Learners) offers this tip sheet on accommodations and assistive technology that may be helpful to the student with an orthopedic disability. Guides for other disability categories are available as well: http://www.projectidealonline.org/orthopedicImpairments.php

4. Who helps with what? Which state agencies are involved in health care and health coverage? What do medical and managed care terms mean? What should families look for in selecting a provider? What questions should families ask?

Information on public and private funding sources available to help pay for or modify an accessible vehicle: http://projectaction.easterseals.com/site/DocServer/vehicle_funding.pdf?docID=10 203

Respite care is a service that offers temporary care for a child or adult with disabilities or chronic or terminal illnesses. The National Respite Locator Service helps parents, caregivers, and professionals find respite services in their state and local area to match their specific needs: http://chtop.org/ARCH/National-Respite-Locator.html

5. Parent-to-parent support skill-building (How can parents provide support and assistance to families without substituting their judgment? Understanding and respecting cultural diversity. How can parents be culturally competent in working with diverse families? How can parents emotionally support, inform, and educate parents so that they are strong, knowledgeable, and confident in caring for their child with special health needs?)

“Of Geese and Community”—a reminder of the strength inherent in supporting each other: http://nysccc.org/advocacy/advocacy-basics/advocacy-tools-for-parent-groups/of- geese-and-community/

“Disability and Emotions”-- emotions have to be recognized and validated in order to best advocate for and support our children with exceptional challenges: http://ddpcmonthlyupdate.us/archive/2009/november/11_09_disability_emotions.php

6. Keeping Records is a learned skill. Parents will learn what kinds of records are important and how to record necessary information. Your child’s health care providers rely on your records to help them make sound medical recommendations.

Medical Records 24/7 is a secure Internet "vault" for your family’s important medical records. There is a $19.95 annual charge for this service: http://www.medicalrecords247.org/

Learn More About Personal Health Records –A personal health record (PHR) is a confidential and easy-to-use tool for managing information about your health: http://www.medicare.gov/PHR/LearnMoreAboutPHR.asp#PHRWorkforme

7. Parent-professional collaboration strategies. How can families work with their health care provider to secure quality care and coverage for their child? How can health care provider and families communicate more effectively? What are effective health advocacy strategies? What is a “medical home” and how can parents access it for their child with special health needs?

This article discusses how Home Health Care Providers and the families they serve can partner together to create an Emergency Disaster Plan: http://www.dhs.gov/files/programs/gc_1221055966370.shtm

“Talking With your Health Care Provider” is a group leader guide for providing practice in preparation for health care visits. It includes good tips on questions to ask and how to choose a health care provider: http://www.wvu.edu/~exten/infores/pubs/fypubs/436.wlg.pdf

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

This article details the origins of waiver programs for children with skilled nursing needs: http://www.specialneedsanswers.com/resources/article.asp?id=19059

This article explains the Circle of Support and offers tips on creating one: http://www.iidc.indiana.edu/irca/education/CircleSupport.html

9. Legal information - what are the rights of children to medical coverage under Medicaid, SCHIP, fee-for-service coverage. How can families use complaint, arbitration, and grievance procedures to resolve disputes? What are the legal obligations of schools to provide health- related services and therapies?

This New York Times article looks at how the Children’s Health Insurance Program would be affected under health care reform legislation from both the Senate and the House: http://prescriptions.blogs.nytimes.com/2010/01/03/program-for-children-has- uncertain-future/

The National Health Law Program offers this Fact Sheet on Medicaid Early and Periodic Screening, Diagnosis and Treatment: http://www.healthlaw.org/images/stories/epsdt/3-ESDPT08.pdf

10. Transition from Pediatric to Adult Health Care and Self Determination in Health Care (the important leadership role that individuals with disabilities and their families must play in moving from pediatric to adult health care).

This article provides useful advice on how to help a young adult learn to access accommodations after high school: http://www.pacer.org/parent/php/php-c165.pdf

This is a brief overview of an array of mechanisms available to address medical and financial decision-making once a child with special needs reaches 18, the age of legal capacity: http://www.specialneedsanswers.com/resources/article.asp?id=5468§ion=4&st ate

11. Fathers – from Jim Swart, Fathers Network Coordinator

Flame, a band comprised of musicians who happen to have a disability, recently were profiled on Good Morning America. You can find their inspirational story here: http://www.flametheband.com/news.cfm/article/82093

Music is good for the soul. It also is a great therapy for individuals who have a disability. Here is a story showing the wonderful things that music can do: http://www.america.gov/st/washfile- english/2007/December/20071212155612bcreklaw6.284732e-02.html

12. Other Links:

This article describes the process for reporting a violation of IDEA (Individuals with Disabilities Education Act) to an official state agency: http://www.nichcy.org/EducateChildren/disputes/Pages/statecomplaint.aspx

It is a New Year! Monica J. Foster offers “5 Disability New Year’s Resolutions”: http://www.bellaonline.com/articles/art65025.asp

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected]

1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Parent to Parent of NYS is New York’s Affiliated Agency of Family Voices, Inc.

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 93 February 1, 2010

As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Employment Listening Sessions

The U.S. Department of Labor's (DOL) Office of Disability Employment Policy (ODEP) will hold a series of six Listening Sessions across the country on disability employment. Each Listening Session is an opportunity for members of the public to provide input to senior Federal officials on their ideas for more effective ways to employ all people with disabilities, including women, Veterans and minorities with disabilities. ODEP seeks input particularly from:

Individuals & Consumers: youth and adults with disabilities, parents and caregivers Employers: public and private Service Providers & Advocacy Organizations: Independent Living Centers, One- Stops, State Rehabilitation

March 3, 2010 Boston, MA - Open to residents of Connecticut, Maine, Massachusetts, New Hampshire, New Jersey, New York, Rhode Island, Vermont, Puerto Rico, Virgin Islands. (DOL Region I)

For more information, to register and/or to provide public comment online, visit: www.disabilitylisteningtour.com

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

The Office of Mental Retardation and Developmental Disabilities and the State Education Department have teamed up to build a new website, New York Acts,

which will provide current information on NYS services and supports available to individuals with autism: http://www.nyacts.org

The Brain Injury Research Center provides a step-by-step guide for developing an Advocacy Plan: http://www.headinjury.com/advoplan.htm

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

The American Academy of Pediatrics has released a revised policy statement on Supplemental Security Income (SSI) for children and youth with disabilities: http://aappolicy.aappublications.org/cgi/content/abstract/pediatrics;124/6/1702

HealthCareCoach.com offers advice on getting a non-formulary medication covered by insurance in this article: www.healthcarecoach.com/resources/index.php?view=detail&id=213&node=54

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

This link provides guidance regarding the rights and responsibilities of families, schools and students when a student has a chronic health care condition. It is not specific to students who have diabetes: http://www.diabetes.org/assets/pdfs/schools/studentchronillness_guidfamschools.p df

A study in the American Journal of Occupational Therapy cites a significant link between the use of assistive technology and the achievement of educational goals: http://blogs.edweek.org/edweek/speced/2010/01/assistive_technology_effective.ht ml?utm_source=feedburner&utm_medium=email&utm_campaign=Feed%3A+OnSp ecialEducation+%28Education+Week+Blog%3A+On+Special+Education%29

Learn about qualifications of the variety of professionals who can offer behavioral and mental health services: http://www.aap.org/publiced/BR_MentalHealth.htm

From the Food and Drug Administration, a new online guide intended for current and potential users of hearing aids.

http://www.fda.gov/ForConsumers/ConsumerUpdates/ucm185723.htm

When a psychological evaluation is recommended, parents sometimes fear the worst. The following article from the National Association of School Psychologists explains the purpose, procedures, limitations of testing, and use of results: http://www.nasponline.org/families/psycheval.pdf

Resources for Grandparents who are raising grandchildren: http://www.grandfactsheets.org/doc/New%20York%2008%20New%20Template.pdf

The following article from AARP talks about using a personal medical record as an advocacy tool, directly affecting the safety and quality of care received: http://www.aarp.org/health/staying_healthy/prevention/a2004-03-01- healthhistory.html

Developing a written care plan is a good way for teens to begin taking ownership of their care. The Center for Children with Special Needs offers these tips and sample care plans: http://cshcn.org/planning-record-keeping/care-plans-teens

“Working with Professionals” is an article from Family Connect, an organization which supports families who are raising a child with a visual impairment: http://www.familyconnect.org/parentsite.asp?SectionID=79&TopicID=367&Docume ntID=4053

Suggestions for communicating with professionals from NYS Citizens’ Coalition for Children:

http://nysccc.org/advocacy/advocacy-basics/communication-skills/communicating- with-professionals/

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

The following article discusses the fundamental principles of person-centered supports: http://www.thearclink.org/news/article.asp?ID=295

The Clearinghouse for Home and Community Based Services is a nationwide resource that promotes the development and expansion of home and community- based services by gathering tools and resources for research, policy making and program development: http://www.hcbs.org/

This resource gives a comprehensive list of the different Medicaid programs available in NYS, including eligibility requirements, budgeting rules, and an explanation of “spend-down”. Note it was written in January of 2009. Income and resource levels generally change annually in NYS and program rules can change at any time: http://www.empirejustice.org/assets/pdf/training-material/medicaid-101.pdf

The problems of obtaining informed anesthesia consent in emergencies is described in this article from Children’s Hospital Boston: http://www.childrenshospital.org/newsroom/Site1339/mainpageS1339P1sublevel51 4.html

"Talking with Your Doctor and Other Healthcare Professionals" provides skill- building information for teenage youth and young adults: http://hctransitions.ichp.ufl.edu/gladd/

The following article talks about the importance of giving teens a voice in their health care and offers tips for getting them involved: http://kidshealth.org/parent/positive/family/teen_health_care.html

11. Fathers – from Jim Swart, Fathers Network Coordinator

Facebook has become a great social networking site to meet up with friends and family. Facebook also has groups that you may become a “fan” of. Words 4 Autism allows families to post their autism success stories. This would be a wonderful place for dads to share hope with other parents, educators, and people with autism: http://www.facebook.com/pages/Words-4-Autism/323956325331?ref=ts

Here is a link to a unique fundraising contest that asks children and adults with autism to design wine labels. A portion of the proceeds benefit local autism programs: http://www.news-herald.com/articles/2010/01/25/news/nh1974597.txt

12. Other Links:

The NYS Inclusive Recreation Resource Center offers an online database of over 250 recreation inclusivity assessments. These assessments provide descriptive information about various facilities and recreation spaces allowing for better planning: www.nysirrc.org

A list of Do’s and Don’ts for parents when communicating with school personnel: http://health.blogs.foxnews.com/2009/10/06/dos-and-donts-for-parents-of- children-with-special-needs/

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 94 March 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Healthy Transitions: Transitioning from Pediatric to Adult Health Care & Services Saturday, March 20, 2010 9:00 am – 1:30 pm Latham, NY

Health is the foundation for all that we do. Planning for the transition from pediatric to adult health care and considering the impact health will have on adult services is essential. This workshop provides an introduction to the knowledge, skills and tools necessary to promote a successful transition; allows for the sharing of experience through a panel of parents who have navigated transition planning; and promotes self- advocacy and collaboration between youth, families, service providers, the medical community and school systems. The Healthy Transitions website, a tool for transition planning, will be introduced.

Sponsored by: Parent to Parent of NYS and the NYS Institute for Health Transition Training

Contact Michele Juda at (518) 381-4350 x 27 or (800) 305-8817 for more information

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

Learn more about genetics and genetic counseling in this guide from the Genetics Alliance: http://www.geneticalliance.org/ksc_assets/publications/gc.final.pdf

This article describes the concept of Universal Design for Learning and explains how it can be helpful to a student with disabilities who is transitioning to middle school or high school: http://www.ncset.org/publications/viewdesc.asp?id=2165

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

“Your Medical Bills: A Consumer’s Guide to Coping with Medical Debt” is available from Families USA (look for the link to the right once this home page is open): http://www.familiesusa.org/resources/resources-for-consumers/coping-with- medical-debt.html

A Guide for Representative Payees from Social Security Online: http://www.ssa.gov/pubs/10076.html

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

This best practices tool kit from the Department of Justice helps state and local governments assure they are providing equal access to government programs, services, and activities for people with disabilities: http://www.ada.gov/pcatoolkit/toolkitmain.htm

Wrightslaw offers this guide to the differences between Section 504 accommodations and IDEA (which governs the development of IEPs): http://www.wrightslaw.com/howey/504.idea.htm

NY Health Access is a recently launched website that provides articles, guides and training materials on access to health care services and health insurance programs for low-income New Yorkers: http://nyhealthaccess.org

From the NYS Department of Health—Financial Guidelines for Child Health Plus and Medicaid: http://www.health.state.ny.us/nysdoh/chplus/who_is_eligible.htm

emotionally support, inform, and educate parents so that they are strong, knowledgeable, and confident in caring for their child with special health needs?)

This companion report to the 2009 study “Caregiving in the U.S.” which was conducted by the National Alliance for Caregiving discusses the issues specific to caring for a child with special needs under the age of 18: http://www.caregiving.org/data/Report_Caregivers_of_Children_11-12-09.pdf

Family Caregiving 101 provides this guide on communicating with caregivers: http://www.familycaregiving101.org/assist/communicating.cfm

This article, written for teens, provides information on the importance of medical records and how to manage them: http://kidshealth.org/teen/your_body/health_basics/medical_records.html

The NYS Department of Health offers this question and answer guide to access to health records: http://www.health.state.ny.us/publications/1443/

The Data Resource Center has partnered with the American Academy of Pediatrics to provide data to help state and family leaders quickly access data on how children and youth in each state experience receiving care within a medical home: http://medicalhomedata.org/content/Default.aspx

The American Academy of Pediatrics’ National Center for Medical Home Implementation offers “Tools for Youth” a guide to assist youth in understanding what to look for in a medical home: http://www.medicalhomeinfo.org/tools/youthindex.html

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

The Center for Medicare and Medicaid Services (CMS) offers this explanation of home and community-based waiver programs: http://www.cms.hhs.gov/medicaidstwaivprogdemopgi/05_hcbswaivers- section1915%28c%29.asp

CMS also offers information on “Promising Practices” in home and community-based services which enable persons of any age who have a long-term illness or disability to live in the most integrated community setting possible: http://www.cms.hhs.gov/PromisingPractices/HCBSPPR/list.asp#TopOfPage

Social Security announced in February the addition of 38 new Compassionate Allowance conditions. The Compassionate Allowance program targets certain diagnoses and conditions for expedited application processing for Social Security and Supplemental Security disability benefits: http://www.ssa.gov/pressoffice/pr/cal021110-pr.html

The Disability Law Handbook—a 73 page PDF file from the Disability and Business Technical Assistance Center, Southwest ADA Center: http://www.swdbtac.org/html/publications/dlh/index.html

This guide for transitioning to adult health care and services provides great tips on starting the transition process at a young age by teaching skills and setting goals. Although written for young adults with Osteogenesis Imperfecta, the message is appropriate for youth who are dealing with a variety of disabilities and special health care needs: http://www.oif.org/site/DocServer/Transition_from_Pediatric_to_Adult_Care.pdf?do cID=7236

Transitioning to adulthood with a special health care need may involve knowing how to ask for workplace accommodations. The Office of Disability and Employment Policy and the Job Accommodation Network offers this sample letter for requesting job accommodations: http://www.jan.wvu.edu/media/accommrequestltr.html

11. Fathers – from Jim Swart, Fathers Network Coordinator

As a father who has a daughter with a Down syndrome I felt close to this story. Will my daughter find love as Christi did? http://www.contracostatimes.com/news/ci_14383133?source=rss&nclick_check=1

How included in church services are our children? Are they accepted by the church and congregation? Here is an article that will give some insight into inclusion for our kids in their religion: http://www.christianitytoday.com/momsense/2000/novdec/7.70.html

12. Other Links:

The U.S. Department of Labor's (DOL) Office of Disability Employment Policy (ODEP) will hold the last of a series of six Listening Sessions on March 3rd in Boston, MA. This session is open to residents of NYS and public comment can be submitted online through March 5th: http://www.dol.gov/odep/disabilitylisteningtour.htm#boston

Parent to Parent of NYS has added the following resources to our website:

FACT SHEETS FOR FAMILIES AND INDIVIDUALS WITH SPECIAL HEALTH CARE NEEDS AND DISABILITIES.

The Fact Sheets included in this booklet were compiled by Parent to Parent of NYS to assist people in NYS locate information needed when navigating service systems. They are a resource for people learning about access to health care and services. Topical sheets are: Medicaid, Home and Community Based Waivers in NYS, Financial Aid for Special Health Care Needs, Doctor Selection and Section 504 http://www.parenttoparentnys.org/Family2Family/Fact%20Sheets/factsheetsbookle t.html

TIPS FOR FAMILIES OF INDIVIDUALS WITH SPECIAL HEALTH CARE NEEDS AND DISABILITIES.

Compiled by reaching out to families and learning from them, this is a booklet of tip sheets for parents and other caregivers on topics that all families think about: Stress Reduction Tips, Coping with Your Child’s Health Care Needs, Medical Prescription Tips, Tips on Handling Medical Appointments, Record Keeping, Researching Health Care Information on the Internet, Disability and Emotions and When Your Child is Diagnosed with a Disability - What Next? http://www.parenttoparentnys.org/Family2Family/Tips%20Sheets/tipssheetsbookle t.html

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 95 April 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Healthy Transitions: Transitioning from Pediatric to Adult Health Care & Services

Saturday, April 17, 2010 Wednesday, May 5, 2010 9:00 am – 1:30 pm 6:00 pm – 8:30 pm St. Mary’s Hospital for Children The Resource Center Bayside, NY Jamestown, NY

Sponsored by: Parent to Parent of NYS and the NYS Institute for Health Transition Training

Contact: Michele Juda at (800) 305-8817 for more information or to register (mandatory)

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

Parent to Parent of NYS was recently named the State Affiliate Organization for Family Voices. Family Voices offers this guide to being a health advocate for your child with special health care needs: http://www.medicalhomeinfo.org/training/materials/April2004Curriculum/Advocacy /Advocacy%20Appendices/App%20B%20-%20families%20as%20advocates.pdf

Family Voices has recently created a voluntary membership program. Membership in Family Voices is NOT necessary to access the services of Parent to Parent of NYS, nor many of the services at Family Voices (www.familyvoices.org). If you are interested in an individual or organizational membership in Family Voices, more information regarding the costs and benefits can be found at the link below. A portion of your membership dollar will benefit Parent to Parent of NYS: http://www.familyvoices.org/FVMembershipForm%20FINAL3.4.10.pdf

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

The Catalyst Center has released a summary of the strong provisions which will benefit consumers contained within the Patient Protection and Affordable Care Act, signed into law on March 23, 2010, and its companion legislation the Health Care and Education Reconciliation Act of 2010: http://www.communitycatalyst.org/doc_store/publications/Health_Reform_Will_Sec ure_Coverage_and_Improve_Quality_of_Care_3.23.10.pdf

“Consumers Guide to Health Reform” is a user-friendly Question and Answer article from Kaiser Health News regarding both the benefits and taxes included in the recently enacted health care reform law: http://www.kaiserhealthnews.org/Stories/2010/March/22/consumers-guide-healthreform.aspx

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

This guide offers answers to frequently asked questions about 504 plans for students with disabilities: http://specialchildren.about.com/od/504s/qt/504faq.htm

This guide is more specific providing examples of possible accommodations for 5 specific disabilities (asthma, attention deficit/hyperactivity disorder, bipolar disorder, emotional disturbance, and epilepsy): http://specialchildren.about.com/od/504s/a/504accom.htm

Written with input from families who have sought mental health services for their children, the Family Guide to Systems of Care for Children with Mental Health Needs explains what parents should know, what they should ask, what to expect, and what to do. Available in both English and Spanish: http://mentalhealth.samhsa.gov/publications/allpubs/Ca-0029/default.asp

Complex Child provides this guide to Federal and State assistance programs for children with special needs: http://articles.complexchild.com/May2009/00123.html

South Carolina has published a Resource Guide for Fathers. There are many references to South Carolina-specific programs in the financial section, but pages 4 through 10 are a wonderful primer on the impact of a child’s diagnosis on the relationship between couples and within the family at large: http://www.familyconnectionsc.org/public/files/docs/Fathers__Resource_Guide_200 9_6.1_Final.pdf

When a family is facing a medical crisis or chronic illness, community members often ask “what can I do to help?” Lotsa Helping Hands offers a free, online database for coordinating these volunteer efforts. A Coordinator, usually a close family member or friend, manages the site by adding volunteers as members and posting tasks the family could use assistance with: http://www.lotsahelpinghands.com/caregiving/home/

This article provides a good overview of keeping a personal health record, identifying information that should be kept on hand at all times and what should be filed at home: http://www.health.com/health/library/topic/0,,tstrc_tp17627,00.html

Parent to Parent of NYS has developed a Health Care Notebook which serves as the backbone of developing a comprehensive health care record, including day-to-day care routines. The notebook, available in both English and Spanish, can be found here: http://www.parenttoparentnys.org/Family2Family/Record%20Keeping/recordkeepin g.htm

The Youth Advisory Committee at the NYS Department of Health developed this portable health record which is perfect for carrying the basic health information that would be necessary in an emergency: http://www.health.state.ny.us/publications/0972.pdf

Confused about what a medical home is? This video from the National Center for Medical Home Implementation features interviews with physicians and families discussing the elements that promote a family-centered medical home: http://www.medicalhomeinfo.org/about/ChildHealthDay2009.html#Video

The Institute on Community Integration and the Research and Training Center on Community Living offers this collection of resources on partnering to achieve quality, inclusive early childhood education: http://ici.umn.edu/products/impact/221/221.pdf

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

The 2005-2006 National Survey of Children with Special Health Care Needs provides information on how NYS compares to the nation in providing family- centered, community-based, coordinated care and facilitating the development of community-based systems of services for such children and their families: http://mchb.hrsa.gov/cshcn05/SD/newyork.htm

The American Academy of Pediatrics released the following articles in December of 2009 in response to the survey results: http://pediatrics.aappublications.org/content/vol124/Supplement_4/

The Family Health Care Decisions Act was signed into law on March 16, 2010. It does not apply to individuals who have developmental disabilities or who reside in mental health facilities if decisions for these individuals can be made under other laws or regulations, such as the Health Care Decision Act for persons with developmental disabilities. An advisory committee will be convened to determine if decision making for these individuals should be incorporated into the Family Health Care Decisions Act:

http://www.state.ny.us/governor/press/031610FHCDA.html

Information regarding the previously enacted Health Care Decision Act for Persons with Mental Retardation signed in September of 2002: http://www.omr.state.ny.us/wt/wt_health_care.jsp

A successful transition to adult health care is a building block for being able to work. Choose Work is a comprehensive website sponsored by the Social Security Administration to explain the Ticket to Work program for those eligible for or receiving cash benefits under the Social Security Disability Insurance (SSDI) program and/or the Supplemental Security Income (SSI) program based on disability or blindness: http://www.choosework.net/

The PACER Center offers this guide to understanding school-based transition planning and provides tips on how to prepare a student for transitioning from school to further education, employment and independent living. Note that in NYS, a transition plan must be in place on the IEP that will be in effect when the student turns 15 years old (not 16 as mentioned in the article): http://www.pacer.org/publications/pdfs/ALL14.pdf

11. Fathers – from Jim Swart, Fathers Network Coordinator

Autism and the Latino Population. How does culture dictate how a family reacts to a child with a disability? Where do underserved populations go to learn about the condition of autism? Here is a story about parents who took matters into their own hands: http://www.bridges4kids.org/articles/2002/7-02/LATimes7-7-02.html

Proyecto Vision (Project Vision), a bilingual website for Latino youth with disabilities, seeks to connect youth to educational and employment opportunities. This link highlights their “Success Stories” page: http://www.proyectovision.net/english/success/index.html

12. Other Links:

The National Institute of Dental and Craniofacial Research offers this guide to helping your family member with a disability have good oral health, including examples of low-tech assistive technology for holding toothbrushes: http://www.nidcr.nih.gov/NR/rdonlyres/6BE70179-F1F8-4EB2-A561- 175F8D42F927/0/DentalCaregiverGuide.pdf

To find an oral health provider in NYS who accepts Medicaid or a particular managed public health benefit search this database courtesy of Insure Kids Now: http://www.insurekidsnow.gov/state/newyork/newyork_oral.html

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 96 May 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Happy Mother’s Day to all women who provide care and support!

The Experience of Uncertainty

The National Human Genome Research Institute at the National Institutes of Health is conducting a survey to learn more about how parents of children with an undiagnosed medical condition think and feel about their child's condition. A link to the survey is posted on the homepage of Syndromes Without A Name, but it is unclear how long the survey will be posted so act quickly: http://www.undiagnosed-usa.org/

Opportunity to Influence the Pediatric Research Agenda

The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) has extended a special invitation to Family Voices and affiliates to submit nominations of drugs, biologic or medical devices that need further study in children. This is a valuable opportunity as they have specifically reached out to families to be a part of the process.

The nomination form, background information, and the prioritization process by which all nominations will be considered and evaluated can be located in a Request for Information (RFI) in the National Institutes of Health Guide: http://grants.nih.gov/grants/guide/notice-files/NOT-HD-10-010.html.

The RFI is titled “Call for Nominations for NICHD’s 2010-11 BPCA Priority List of Needs in Pediatric Therapeutics.” The RFI contains a link to an online form and also provides the option to email, fax or mail the completed form to NICHD. Nominations will be accepted through May 30, 2010.

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

May 6th marks the 5th anniversary of National Children’s Mental Health Awareness Day. Learn about the initiative here: http://www.samhsa.gov/children/

And for more in-depth information on understanding and addressing children’s mental health needs, a report from the April 2009 interdisciplinary summit on children’s mental health sponsored by the Society for Research in Child Development can be found here: http://www.srcd.org/index.php?option=com_docman&task=doc_download&gid=838

May is National Foster Care Month. Learn about the American Academy of Pediatrics’ Healthy Foster Care America initiative here: http://www.aap.org/fostercare/PDFs/HFCA_flier%204.7.10.pdf

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

Governor Paterson has announced that New York State will participate in the temporary federal high risk pool made available through health care reform: http://www.ins.state.ny.us/press/2010/p1004302.htm

The health care reform bill outlaws denial of insurance to those with preexisting conditions. But this change won’t take full effect for years. The following article provides the basics as it relates to health care reform bill recently passed: http://www.csmonitor.com/USA/Politics/2010/0324/Health-care-reform-bill-101- rules-for-preexisting-conditions

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

The following “issue brief” gives an overview of school nursing services role in healthcare. It includes Federal and State laws: http://www.nasn.org/Default.aspx?tabid=348

An Individual Health Plan (IHP) is a tool that can be compiled by the school nurse, health care providers and parents and incorporated into the students IEP or 504 Plan for students with special health care needs. The link below includes comprehensive forms that can be used to develop a students IHP: http://www.opi.mt.gov/pdf/health/healthcareneeds.pdf

HealthReform.gov, an official government website managed by the U.S. Department of Health and Human Services, provides ongoing news and information regarding health care reform implementation. Secretary Sebelius and health care reform experts answer questions from the public via live weekly web chats; the site maintains an archive of previous chats. The effect that health care reform is anticipated to have on New York State specifically can also be found by utilizing the “Health Reform Where You Live” feature: www.healthreform.gov

In response to health care reform legislation, the Office of Consumer Information and Insurance Oversight has been created. This office will be responsible for ensuring enforcement of the new insurance market rules, providing guidance and oversight on the state-based health care exchanges, and administering the temporary high-risk pools that are currently being established. Additionally, it will compile and maintain data for public dissemination via the internet on available insurance options: http://www.hhs.gov/ociio/

The following article gives an in depth look at why it is important to understand cultural differences as it relates to supports and services for families who have special needs: http://www.ncset.org/publications/essentialtools/diversity/partIV.asp

The American Academy of Pediatrics has published “Racial and Ethnic Disparities in the Health and Health Care of Children” a technical report which reviews and synthesizes the published literature on racial/ethnic disparities: http://pediatrics.aappublications.org/cgi/content/abstract/125/4/e979

A glossary of medical abbreviations commonly used in hospital, medical, and dental records can be found here: http://www.jdmd.com/glossary/medabbr.pdf

Knowing your child’s medical history is important especially during an emergency. The following article includes information about personal health records, why it’s important and what it should contain: http://www.myphr.com/index.php/phr_news_stories/article/2247/

The following article from “PULSE”, the monthly newsletter from the Association of Maternal & Child Health Programs, explains the medical home model, its history, current practices and future development: http://www.amchp.org/AboutAMCHP/Newsletters/Pulse/April2010/Pages/article.asp x

This brief video from Champions for Inclusive Communities explains the 6 core elements of an effective system of care for children with special health care needs: http://www.championsinc.org/about/intro/

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

The following link provides information about person-centered and family-centered planning. It includes the basic concepts, key characteristics and possible limitations: http://www.aamr.org/content_191.cfm?navID=68

The Pathways to Independence Natural Supports project, conducted by the University of Wisconsin, seeks to discover, support and disseminate creative and promising practices for supporting youth with disabilities to participate more fully in school, work and community activities utilizing natural supports. There are many resources related to natural supports and inclusion available on the website: http://www.waisman.wisc.edu/naturalsupports/

Insure.com provides information on appealing a heath plan decision, sample letters to dispute denials and an explanation of the different type of appeals (internal or external): http://www.insure.com/articles/healthinsurance/claim-denial.html

The Commonwealth Fund provides information about the timeline for Health Care Reform implementation here: http://www.commonwealthfund.org/Content/Publications/Other/2010/Timeline-for- Health-Care-Reform-Implementation.aspx

The following link defines “self-determination” and includes suggestions on how educators from early elementary school through high school can promote self- determination by their students with disabilities: http://www.athealth.com/Consumer/disorders/selfdetermine.html

The Family Center on Technology and Disability (FCTD) has a guide to preparing for successful transitions (birth to grade 12 and post-secondary) for children and young adults who use assistive technology: http://www.fctd.info/show/newfig

11. Fathers – from Jim Swart, Fathers Network Coordinator

The Philly.com community page recently had a story regarding The Arc of Montgomery, Berks and Bucks Counties’ Father’s Group. This group helps dads understand and support their child who has a disability: http://www.philly.com/community/pa/bucks/89693942.html?cmpid=15585797

From The Iowa State University “Me and My Dad: Strengthening Relationships Between Dads and Kids” newsletter; Joani Gent, a freelance writer, shares thoughts from within families of children with disabilities. This also includes links to father’s groups, books to read with your child and activity ideas for father and child: http://www.extension.iastate.edu/dads/stages/4_2001.htm

12. Other Links:

Monica and David, a film about the relationship and struggle for independence shared by this couple with Down Syndrome won the award for Best Documentary Feature at the Tribeca Film Festival in April. See the story and a trailer for the film here: http://www.disabilityscoop.com/2010/04/30/monica-david/7878/

The Joshua O'Neil and Zeshan Tabani Enrichment Fund offers financial assistance to young adults (18+) with Down Syndrome who wish to continue to enrich their lives by enrolling in postsecondary programs or by taking classes that will help them enrich life through employment, independent living skills, life skills or another way. To download the application (deadline July 16, 2010), visit: http://www.ndss.org/

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 97 June 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Happy Father’s Day to all men who provide care and support!

The Dad’s Place at Parent to Parent of NYS is celebrating two years of connecting and supporting fathers, grandfathers, uncles, in fact any male who is important in the life of a child with a disability. The group is currently requesting input to assure that they are meeting your needs. Voice your opinions and suggestions via the 5- 10 minute survey posted here: http://www.surveymonkey.com/s/SS2PVQ6

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

CNN Health offers their “Top Empowered Patient Tips for 2010” in this article: http://www.cnn.com/2009/HEALTH/12/31/top.empowered.patient.lessons/index.ht ml

The Cornell Research Program on Self-Injurious Behavior in Adolescents and Young Adults has several new fact sheets on a variety of topics related to self-injury, including what to expect from therapy: http://www.crpsib.com/

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

For information on various health care reform issues, go to the Kaiser Family Foundation’s health care reform page at: http://healthreform.kff.org/

or the Families USA website at: http://www.familiesusa.org/health-reform-central/

The Patient Advocate Foundation offers multiple resources regarding financing healthcare services, including the co-pay relief program (for specific diagnoses) and the National Underinsured Resource Directory: http://www.patientadvocate.org/index.php

3. 504 Accommodation Plans related to Health Conditions (i.e. what are the legal obligations of schools to provide health-related services and therapies? Accommodations needed for equal access)

Individual Health Plans (IHP) are used when a student’s health needs impact the school day. The IHP may be a related service as part of an IEP or it may be an accommodation as part of a Section 504 plan. Cincinnati Children’s Hospital provides more information here: http://www.cincinnatichildrens.org/svc/alpha/c/special- needs/resources/education/school-health.htm

“Campus Mental Health: Know Your Rights” is a guide from the Bazelon Center for Mental Health Law. It includes a chapter regarding academic accommodations and is available in print for a nominal cost or as a free pdf download: http://bazelon.org.gravitatehosting.com/News- Resources/Publications/List/1/CategoryID/19/Level/a/ProductID/18.aspx?SortField =ProductNumber%2cProductNumber

The mission of Easter Seals Project ACTION (Accessible Community Transportation in Our Nation) is to promote universal access to transportation for people with disabilities. The website offers technical assistance, guides, and answers frequently asked questions: http://projectaction.easterseals.com/site/PageServer?pagename=ESPA_homepage

The NYS Medical Equipment Providers Association maintains an online membership directory which can serve as a reference tool for locating NY based durable medical equipment providers: http://www.nymep.org/

emotionally support, inform, and educate parents so that they are strong, knowledgeable, and confident in caring for their child with special health needs?)

Hopeful Parents is an online community that describes itself as “a place of common ground”. Connecting parents of children with special needs through shared stories, it offers a place to be reminded we are not alone by sharing with those who understand: http://www.hopefulparents.org/

Stories That Heal, a national public service advertising campaign, aims to encourage, educate, and inspire young people within the African American community to talk openly about mental health issues. The program is sponsored by SAMHSA, the Ad Council, and the Stay Strong Foundation: http://www.samhsa.gov/samhsaNewsletter/Volume_18_Number_2/MentalIllnessAfr icanAmericans.aspx

Create Your Own Care Plan for Parents from The Center for Children with Special Needs offers three different types of plans parents can use: http://cshcn.org/planning-record-keeping/care-plans-parents/parents-create-care- plan

Maintaining Child Health Records in Child Care Settings—from California Childcare Health Program: http://www.ucsfchildcarehealth.org/pdfs/healthandsafety/recorden081803_adr.pdf

The AAP National Center for Medical Home Implementation released a new monograph, “Measuring Medical Homes: Tools to Evaluate the Pediatric Patient- and-Family-Centered Medical home.” While this is a 47-page document, with many different tools available, parents will want to be sure to take note of pages 6 & 7. These pages list various components of a qualified medical home which would be helpful to know: http://www.amchp.org/AboutAMCHP/Newsletters/member- briefs/Documents/Monograph_FINAL_March29.pdf

Tips for talking with your child's doctor can be found in this article from Kids Health. Be sure to scroll through the pages for all of the tips: http://kidshealth.org/parent/system/doctor/talk_doctor.html#

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

The Kaiser Family Foundation offers an online database of Medicaid services provided in each state, including information regarding available waiver programs. This would be a good starting point in developing the questions to ask for anyone considering a move: http://medicaidbenefits.kff.org/state_main.jsp

NYS Medicaid Provider Manuals are available online from eMedNY.org. These service-specific manuals are written for providers to guide them regarding the specific rules governing the provision of care and service to Medicaid recipients: http://www.emedny.org/providermanuals/index.html

The 11th Anniversary of the Supreme Court’s decision in Olmstead v. L.C., which held that the unjustified institutional isolation of people with disabilities is a form of unlawful discrimination under the Americans with Disabilities Act (ADA), will be celebrated on June 22, 2010. Visit the Community Living Initiative page at the U.S. Department of Health and Human Services to learn about their commitment to community integration: http://www.hhs.gov/od/topics/community/olmstead.html

From the U.S. Department of Justice, a commonly asked questions guide to the obligations of child care centers under the Americans with Disabilities Act: http://www.ada.gov/childq%26a.htm

The Disability Law Lowdown offers this podcast for teens on preparing to take an active role in the development of your IEP. Many questions to consider are offered; don’t forget to think about how health issues affect your planning: http://dll.ada-podcasts.com/shownotes/DLLPod47.php

Kids Health offers this great article packed with tips on helping your teenager take responsibility for their health care. It includes information for teenagers with special health care needs and/or developmental disabilities: http://kidshealth.org/parent/system/ill/teen_health_care.html

11. Fathers – from Jim Swart, Fathers Network Coordinator

Many disability related projects help our children express themselves. Photography is a great way of achieving the goal of expression. Jack Ebert, the father of a 5- year-old with autism, and a Chicago-based photographer gave kids with autism cameras to capture their vision of their lives. The photos are part of an exhibit and this link includes a news story regarding the project: http://www.disabilityscoop.com/2010/05/21/kids-with-cameras/8159/

Physical activity is important for all but when a disability is involved it is important that any modifications that can be made for the person are made. The website PE Central has pages for parents and educators with tips on how to include adapted physical education in a school curriculum: http://www.pecentral.org/adapted/adaptedmenu.html

12. Other Links:

Think College: College Options for People with Intellectual Disabilities will present a free webinar on June 21st from 3 - 4:30 PM EDT. The webinar will provide an in- depth presentation of the five-year postsecondary education experience of Micah Fialka-Feldman, a 25 year old student with an intellectual disability, at Oakland University. The presentation will include discussion of a range of practical strategies and supports used to enhance Micah’s active participation in the classroom, course work, student activities, and dorm living. Critical components which contributed to a successful experience will be shared, such as: the immediate and inclusive participation of Micah on the campus in all domains of student life and learning, the intentional engagement of other students in planning with and supporting Micah, the creation of opportunities for Micah to participate in student activities, and others.

The registration link (space is limited) can be found on their home page: http://www.thinkcollege.net/

The Campaign for Disability Employment reinforces that people with disabilities want to work and that their talents and abilities positively impact businesses both financially and organizationally. Their website, “What Can You Do?” has links for employers, families, educators and people with disabilities, including youth: http://www.whatcanyoudocampaign.org/

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 98 July 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Health Reform Implementation

Health and Human Services Secretary Kathleen Sebelius announces the new preexisting condition insurance plans (also known as the high-risk pool program) which will provide a new health coverage option for Americans who have been uninsured for at least six months, have been unable to get health coverage because of a health condition, and are a U.S. citizen or are residing in the United States legally. This is transitional coverage until 2014 when health insurance exchanges become available and pre-existing condition exclusions are prohibited.

Note that NYS will not be participating in the high-risk pool administered by the federal government, but will instead receive federal funding to operate their own pool meeting the statutory requirements included in health reform legislation. NYS expects to begin accepting applications for this pool in August: http://www.hhs.gov/news/press/2010pres/07/20100701a.html

For more information, please refer to this Fact Sheet from the Department of Health and Human Services “Temporary High-Risk Pool Program”: http://www.hhs.gov/ociio/initiative/hi_risk_pool_facts.html

Healthcare.gov will provide a portal for obtaining up-to-date information regarding insurance options in each state. Expect to see more information added in the coming months. The site also provides information explaining the Affordable Care Act, including information specific to various populations (i.e. families with children, persons with disabilities, young adults, etc.): www.healthcare.gov

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

Harvard Family Research Project offers “A User’s Guide to Advocacy Evaluation Planning”. This tool explains the four basic steps of how to evaluate advocacy and policy change efforts: http://www.hfrp.org/var/hfrp/storage/fckeditor/File/file/Supporting%20files%20for %20publications/UserGuideAdvocacyEvaluationPlanning.pdf

Preemie Voices offers tools and information useful for anyone who wants to advocate on behalf of premature infants and their families: http://www.preemievoices.com/

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

NYS lawmakers passed legislation in June that would require insurers to cover autism-related screenings, diagnoses and treatments: www.nytimes.com/2010/06/23/nyregion/23autism.html

Health Rights Hotline offers a 4 page booklet with strategies and suggestions for appealing a health plan or medical group decision: http://hrh.org/wp-content/uploads/ag%20appeals.PDF

3. Meeting health needs at school (i.e. What are the legal obligations of schools to provide health-related services and therapies? What are 504 accommodations to assure equal access?)

The Center for Health and Health Care in Schools at George Washington University offers a summary of the laws that affect the provision of health services for students with disabilities or students enrolled in a special education program: http://www.healthinschools.org/Health-in-Schools/Health-Services/Special- Education-Related-Services/Summary.aspx

The Nurse Practice Act, found in Article 139 of New York State’s Education Law, is often referred to when navigating health services within systems. The Office of Professions has issued “Nursing: Guide to Practice”. The text of Article 139 begins on page 74 where nursing is defined in Section 6902 and exemptions to the licensure requirement are found beginning at page 76 in Section 6908: http://www.op.nysed.gov/prof/nurse/nurse-guide-april09.pdf

The CDC Parent Portal is a great source for credible, accurate information in helping parents raise healthy kids. In addition to general health and development information, including how to make good health habits a routine for your child, information on diseases and conditions is also provided: http://www.cdc.gov/parents/

Learn more about your county health department by visiting the website for the New York State Association of County Health Officials. A directory is provided that includes county-specific information, including a staff directory, contact information and a listing of services provided. Under services, a designation of CSHCN would indicate a Children with Special Health Care Needs program is offered by the county. Services vary county to county so contact the local office for specifics. A designation of PHCP indicates that the county operates a Physically Handicapped Children’s Program, which is the financial assistance component of the CSHCN program: www.nysacho.org/i4a/member_directory/feSearchForm.cfm?directory_id=2&pageid =3289&showTitle=1

Although the focus of this article from Beyond Intractability is on mediation, it offers a valuable review of the qualities of an empathic listener: http://www.beyondintractability.org/essay/empathic_listening/

The National Spinal Cord Injury Association Resource Center offers a Fact Sheet on starting a support group or a discussion group: http://www.makoa.org/nscia/fact18.html

The Mayo Clinic offers a free online tool called the Health Manager which can help organize your family’s health information: http://www.healthvault.com/msn-health/websites/mayoclinic- mayoclinichealthmanager.html?ref=M09041501&WT.mc_id=M09041501>1=310 36

The New York State Department of Health offers a “Health Summary for your Child with Special Health Care Needs”. This would be useful to complete especially in

preparation for meeting with new health care providers: http://www.health.state.ny.us/community/special_needs/docs/health_summary.pdf

“Partnering with your Doctor: The Medical Home Approach” was developed by the Region 4 Genetics Collaborative Medical Home Education Workgroup as a guide intended to help families connect with their child's doctor, other medical professionals and caregivers through a medical home. Although it was written for families whose children have genetic conditions, it is useful for all families who seek to achieve accessible, continuous, comprehensive, coordinated, compassionate, culturally effective, and family-centered care for their children: http://region4genetics.org/information_pages/Region_4_Medical_Home_Guide.pdf

The National Committee for Quality Assurance offers recognition to primary care practices that offer a patient-centered medical home. Learn more here: http://www.ncqa.org/tabid/631/default.aspx

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

Links to the NYS DOH Resource Directory for Children and Young Adults with Special Health Care Needs (offered in several languages) is available here: http://www.health.state.ny.us/publications/0548/

The Nursing Home Transition and Diversion Medicaid Waiver Program manual is available here: http://www.nyhealth.gov/facilities/long_term_care/waiver/nhtd_manual/

Published on the website of the New York Statewide School Health Services Center is this “Bill of Rights for Students with Chronic Diseases at School”: http://www.schoolhealthservicesny.com/files/news/SED%20Bill%20of%20Rights% 20final.pdf

On June 22, 2010 the Obama Administration announced new regulations issued by the Department of Health and Human Services summarized in a Fact Sheet entitled “The Affordable Care Act’s New Patient’s Bill of Rights”:

http://www.kaiserhealthnews.org/Stories/2010/June/22/Document-Patients-Bill-of- Rights-Fact-Sheet.aspx

MY PLACE, a component of the Healthy Transitions website, is a network of personal health sites that connects young adults who have developmental disabilities with their “Circles of Support.” Each individually owned MY PLACE site includes a personal health summary, a shared calendar, a goal setting area, a discussion board, and other tools for transition planning and care coordination. MY PLACE seeks to promote self-determination, improve communication, raise awareness, and build effective partnerships during the transition process.

Learn more by reviewing the MY PLACE handbook here: http://healthytransitionsny.com/data/2010MyPlaceHandbook.pdf or visit Healthy Transitions to set up a MY PLACE website here: www.healthytransitionsny.org

This article from SAMHSA, the Substance Abuse & Mental Health Services Administration, offers important thoughts on parenting a teen who has a disability. Please note it does use the word “normal” in ways that may be offensive to some readers: http://www.enotalone.com/article/9721.html

11. Fathers – from Jim Swart, Fathers Network Coordinator

Families that include children both with and without disabilities often struggle with concepts of fairness and equity among siblings. Additionally, they might question the role and responsibilities of the non-disabled child both day-to-day and long- term. Including a brother/sister in the life of sibling who has a disability, and assuring that the needs of all the children within a family are met, is very important. The links below provide resources: http://www.athealth.com/Consumer/disorders/disabsibling.html http://www.child-autism-parent-cafe.com/siblings-of-children-with-special- health.html http://www.disabilityscoop.com/2009/04/21/inside-the-world-of-siblings/2940/

12. Other Links:

Parent to Parent of NYS and the Direct Support Professional Alliance of NYS (DSPANYS) are launching an initiative called the Difference Makers. The goal is to

recognize direct support professionals who have made a difference for a family or for a person with a disability or special health care need. Learn more about the program, including information on how to make a nomination here: http://www.parenttoparentnys.org/PDFs/difference%20makers.pdf

Youth Rally is an annual gathering held in July providing the opportunity for 11 to 17 year olds with bowel and bladder dysfunction to be with others their age who share the same issues. More information can be found on their website: www.Rally4Youth.org

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

Links Digest- Volume 99 August 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Health Reform Implementation

Secretary of Health and Human Services, Kathleen Sebelius, issued a letter to Governors on July 26, 2010 regarding the opportunities available through the Affordable Care Act for people with disabilities: http://www.nga.org/Files/pdf/100726HHSLETTER.PDF

This briefing details the preventative care services that will be available with no cost sharing under the Affordable Care Act: http://www.healthcare.gov/law/about/provisions/services/index.html

The Urban Institute and Robert Wood Johnson Foundation offer this analysis of how health reform under the Affordable Care Act will impact young adults: http://www.urban.org/UploadedPDF/412130-ppaca-young-adults.pdf

From Kaiser Health News, “Seven Health Care Changes You Might Have Missed”: http://www.kaiserhealthnews.org/Stories/2010/July/09/health-overhaul- changes.aspx

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

This article explores the link between the state of the economy and the utilization of dental services, with attention paid to increasing costs that result from the lack of routine care: http://www.thefiscaltimes.com/Issues/Health-Care/2010/07/20/Lack-of-Dental- Care-is-Costing-a-Bundle.aspx

The following article was written over 10 years ago but it provides a refresher course on parenting children with chronic illnesses: www.parenting-ed.org/handout3/Specific Concerns and Problems/coping with chronic illness.htm

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

This article from the Chicago Tribune shares one family’s story when faced with the rescission of their daughter’s health insurance policy. This practice will no longer be allowed for state-regulated individual and small group policies except in cases of fraud or intentional misrepresentation of material facts beginning in September of 2010: http://www.chicagotribune.com/health/ct-biz-0706-rescissions-health- reform20100706,0,7052695.story

NYS has a policy which allows low-income pregnant women to receive pre-natal care under a presumption of Medicaid eligibility. This ensures access to treatment while Medicaid eligibility is determined. NYS does not require proof of income in order to obtain presumptive Medicaid status. Learn more about presumptive eligibility and the benefits to the health of women and children here: http://nashp.org/sites/default/files/Presumptive%20Eligibility%20Monitor.pdf?q=fil es/Presumptive%20Eligibility%20Monitor.pdf

3. Meeting health needs at school (i.e. What are the legal obligations of schools to provide health-related services and therapies? What are 504 accommodations to ensure equal access?)

“Supporting Students with Bone Marrow Failure Diseases: A Guide for Parents & School Personnel” is a useful guide from the Aplastic Anemia & MDS International Foundation. While much of the information is specific to bone marrow failure diseases, there are several checklists and a list of recommended reading for children, teens and adults that would be useful regardless of the nature of the chronic and/or serious illness: http://www.aamds.org/aplastic/files/dms/SupportingStudentsGuide.pdf

Read the position statement of The National Association of School Nurses regarding the use of Individualized Healthcare Plans (IHP) here: http://www.nasn.org/Default.aspx?tabid=226

On July 21, 2010 the Senate’s Health Education Labor & Pensions Committee held a full committee hearing on the subject of Treating Rare and Neglected Pediatric Diseases: Promoting the Development of New Treatments and Cures. Links to the testimony presented, which includes testimony from a parent whose child has Epidermolysis Bullosa (EB), can be found here: http://help.senate.gov/hearings/hearing/?id=d132692d-5056-9502-5da9- 23c77808a20f

NYConsumerHealth.org is a project of the Public Policy and Education Fund of NY. The website provides both state and county-specific information on health care coverage options, access to care, and the rights afforded to health care consumers in NYS: http://nyconsumerhealth.org/

The Summer 2010 edition of Autism Spectrum News is dedicated to “Helping Families and Individuals Cope with Stress”. Parent to Parent of NYS Regional Coordinator, Mary Jo Hebert, authored an article which is relevant to all parents raising a child with a disability regardless of specific diagnosis entitled “Helping Parents of Children with ASD Cope with Stress”. The article can be found on page 27: http://www.mhnews-autism.org/

Family Voices of Wisconsin offers “Shared Participation: Strategies to Increase the Voice of Families from Diverse Backgrounds as Partners and Advisors”: http://www.fvofwi.org/Publications/SharedParticipation.pdf

The following article provides information on how to develop an emergency treatment plan for kids with special or chronic health issues. It also includes information on communicating with your local EMTs, your child’s teacher and preparing for a disaster: http://knol.google.com/k/emergency-treatment-plans-for-kids-with-special-or- chronic-health-issues#Emergency_Treatment_Plans

In June of 2010, the U.S. Department of Education issued this guidance to answer questions concerning FERPA, the Federal Educational Rights and Privacy Act, and the release of personally identifiable student information during emergencies and/or disasters. The guidance stresses that FERPA is not meant to be an obstacle in responding to emergencies and protecting the safety of students. Learn how, when, and what information can be shared with outside parties: http://www2.ed.gov/policy/gen/guid/fpco/pdf/ferpa-disaster-guidance.pdf

The following article talks about the “Medical Home” and includes examples of how it’s working in a rural area in upstate New York: http://www.huffingtonpost.com/james-r-knickman/health-care-innovation- in_b_627872.html

Positive parent-professional relationships are essential for successful advocacy and lead to better outcomes for people with special needs. AMCHP, the Association of Maternal and Child Health Programs, recognizes, values and commends families who participate in developing family-centered systems of care: www.amchp.org/AboutAMCHP/Newsletters/Pulse/July2010/Pages/article.aspx

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

This US District Court Case from the state of Illinois will be one to watch. At issue is the reduction in funding that occurs when young adults “age-out” of Illinois’ Medically Fragile/Technology Dependent Waiver program at the age of 21. The plaintiffs allege that the reduction in funding available through the adult service system results in insufficient home-based medical care for Medicaid-eligible adults putting those adults at risk of institutionalization in violation of Title II of the Americans with Disabilities Act: http://www.ada.gov/briefs/interest_Hampe_br.pdf

OPWDD, the Office for People with Developmental Disabilities (formerly OMRDD), released Final Regulations--Eligibility for Children who are Aging Out in October of 2009. These regulations address the procedures for applying for OPWDD services for an individual who will be aging out of either the school or foster care system and has not been previously found eligible for services through OPWDD: http://www.omr.state.ny.us/regs/hp_regs_agingout_finalregs.jsp

disputes? What are the legal obligations of schools to provide health- related services and therapies?

The U.S. Departments of Justice and Health and Human Services have jointly issued a new guide for medical providers entitled “Access to Medical Care for Individuals with Mobility Disabilities”. The guide provides information on the requirements to offer accessible care including accessible facilities, examination rooms, and equipment under Titles II and III of the ADA and Section 504 of the Rehabilitation Act of 1973: http://www.ada.gov/medcare_mobility_ta/medcare_ta.pdf

The Elizabeth M. Boggs Center on Developmental Disabilities at the Robert Wood Johnson Medical School has issued a pamphlet entitled: “Transplants for Children with Disabilities: Information for Parents”: http://rwjms.umdnj.edu/boggscenter/news/documents/TransplantPampletFINAL6- 11.pdf

Healthy Transitions has filmed 40 video vignettes that depict situations which occur in real life and demonstrate skills that young adults can develop in order to become more actively involved with their own health care. In addition, they have developed an accompanying moderator guide designed for group sessions with an instructor and 5-15 young adults with developmental disabilities, although the guide is useful in enhancing one-on-one learning as well.

View the videos here: http://www.healthytransitionsny.org/skills_media/video_show

The Moderator Guide is available here: http://www.healthytransitionsny.org/data/2010.ModeratorGuide.pdf

The National Collaborative on Workforce and Disability/Youth funded by the Office for Disability Employment Policy has released “Making the Move to Managing Your Own Personal Assistance Services (PAS): A Toolkit for Youth Transitioning to Adulthood”. The toolkit assists youth in strengthening some of the most fundamental skills essential for successfully managing their own PAS, skills that are inherently valuable across many settings: effective communication, time- management, working with others, and establishing professional relationships. The toolkit can be found here: http://www.ncwd-youth.info/PAS-Toolkit

11. Fathers – from Jim Swart, Fathers Network Coordinator

We do not like to think it will happen to us, but disasters do happen. Do we know what to do in a disaster and will our children with a disability be able to respond? The tips in the link below from The American Red Cross will be helpful in preparing our families: http://www.redcross.org/portal/site/en/menuitem.d8aaecf214c576bf971e4cfe4318 1aa0/?vgnextoid=25920c45f663b110VgnVCM10000089f0870aRCRD&vgnextfmt=de fault

From Surfers Healing website: “Surfers Healing was founded by Israel and Danielle Paskowitz. Their son, Isaiah, was diagnosed with autism at age three. Like many autistic children, he often suffered from sensory overload-- simple sensations could overwhelm him. The ocean was the one place where he seemed to find respite.” The link below takes you to this unique opportunity for children with autism: http://surfershealing.org/index.html

12. Other Links:

Effective July 13, 2010, the New York State Office of Mental Retardation and Developmental Disabilities (OMRDD) officially became the New York State Office For People With Developmental Disabilities (OPWDD). Congratulations to Parent to Parent representatives and Jim Swart’s family who were present for the signing: http://www.omr.state.ny.us/news/name_change.jsp

The United States Department of Justice settled a lawsuit in July of 2010 with NYS and its public university systems regarding access to voter registration services at campus offices serving students with disabilities: http://www.justice.gov/opa/pr/2010/July/10-crt-803.html

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

And NYS Affiliate Organization of Family Voices

Links Digest- Volume 100 September 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Health Reform Implementation

NY Bridge Plan—Temporary Coverage for those with Pre-Existing Conditions

New York State is now enrolling participants for the NY Bridge Plan. The Bridge Plan will provide temporary insurance for a limited number of legal NYS residents who have pre-existing conditions and have been without insurance for the last 6 months. The NY Bridge Plan will be in effect until health care exchanges become available in 2014.

The press release is available here: http://www.ins.state.ny.us/press/2010/p1008231.htm

The application and information regarding rates, coverage, and providers is available here in both English and Spanish: http://www.ghi.com/nybridgeplan/index.html

Follow Health Care Reform Implementation in NYS

A website was recently launched that will provide up-to-date information about the implementation of health care reform in NYS, solicit public comment, and serve as a resource on available insurance options in New York: http://www.healthcarereform.ny.gov/

Input Sought on How Health Care Reform is Affecting Families

Family Voices is partnering with researchers at Georgetown University to track how health reform is affecting families, and in particular, families who have children with

special health care needs. If you are willing to help with this effort, more information is available here: http://www.parenttoparentnys.org/headlines.htm

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

The Partners in Policymaking program provides an excellent opportunity for people with developmental disabilities, parents and family members to improve advocacy skills and to prepare to assume leadership roles in policymaking. The program is free of charge and for the first time ever in 2011 will be offered in an interactive distance learning format.

Learn more about the program here: http://www.ilr.cornell.edu/edi/pip/index.cfm or to apply for the 2011 class (the application deadline is October 15th) visit here: http://www.ilr.cornell.edu/edi/pip/class_application.cfm

The University of Michigan offers this article regarding children with chronic health conditions. It includes information about the effects of chronic illness on children and their families and tips for coping: http://www.med.umich.edu/yourchild/topics/chronic.htm

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

The Hearing Loss Association of America offers tips and resources on securing insurance coverage and/or financial assistance for hearing aides: http://www.hearingloss.org/support/financial.asp

This report from CNN highlights medical billing statement danger zones which warrant careful attention: http://www.cnn.com/2010/HEALTH/04/29/insurance.bill.hot.zones/index.html

3. Meeting health needs at school (i.e. What are the legal obligations of schools to provide health-related services and therapies? What are 504 accommodations to assure equal access?)

The United States Department of Agriculture provides several resources on accommodating special dietary needs within child nutrition programs, including school-based services: http://healthymeals.nal.usda.gov/nal_display/index.php?info_center=14&tax_level =3&tax_subject=527&topic_id=2207&level3_id=6621&level4_id=0&level5_id=0&pl acement_default=0

The American Academy of Pediatrics offers these tips on what health information to share with your child’s school (if a registration screen pops up, hit “visitor” to view the page without registration): http://www.healthychildren.org/English/health- issues/conditions/chronic/pages/Chronic-Conditions-and- School.aspx?nfstatus=401&nftoken=00000000-0000-0000-0000- 000000000000&nfstatusdescription=ERROR%3a+No+local+token

The American Academy of Pediatrics offers this question and answer guide on how to effectively use a managed care plan: http://www.aap.org/family/mancarbr.htm

The following article provides some tips about choosing a pediatrician for a child with special needs: http://specialchildren.about.com/od/medicalissues/bb/pickaped.htm

The Commission on the Public’s Health System, with funding by the United Hospital Fund and in partnership with the Brooklyn Perinatal Network and The Bronx Health Link, recently released “Culturally Competent Care: Some Examples of What Works!” The publication can be downloaded from their home page: http://www.cphsnyc.org/

Caregivers and Your Health: How to Manage Stress—tips from National Family Caregiver Association: http://www.thefamilycaregiver.org/pdfs/Evercare_caregiver_stress.pdf

Have you ever wondered what happens when HIPAA privacy rights are violated? These two web pages provide some insight: http://www.mclane.com/newsroom/articles/health_care/hipaa_compliance- consequences_becoming_more_real.php

and: http://www.privacyrights.org/fs/fs8a-hipaa.htm#11

MedicineNet.com offers an online medical dictionary: http://www.medterms.com/script/main/hp.asp

The following link from the Maternal & Child Health Bureau describes the six critical indicators of systems of care for CSHCN that are family-centered, community- based, coordinated and culturally competent: http://www.mchb.hrsa.gov/programs/specialneeds/measuresuccess.htm

Some medical home practices have implemented the use of a pre-visit interview. The interview assists parents in planning for a visit and also allows the office staff to be prepared in order to maximize the benefits of the appointment. A sample interview form is available here: http://www.medicalhomeinfo.org/downloads/pdfs/Previsit_Contact_Form.pdf

8. Understanding Medicaid funded Waiver Services (including the philosophy of individual and family-centered supports)

Champions for Inclusive Communities provides this primer on analyzing results from the National Survey of Children with Special Health Care Needs, specifically the results related to Outcome 5. Outcome 5 measures if services are organized so families can use them easily. Learn how the National Survey measures this desired outcome, view the national results, and learn how to compare state-specific data utilizing the tools available from the Data Resource Center for Child and Adolescent Health: http://www.eiri.usu.edu/projects/champions/factsheets/DrillingDownOutcome5.pdf

Learn about Family Support Services and the Family Support Consumer Councils here: http://www.omr.state.ny.us/hp_fss_all.jsp

In July, the US Department of Justice reached a settlement agreement with a private day care center in California regarding the provision of diabetes-related care to a student enrolled in their program. The complaint alleged violations of Title III of the Americans with Disabilities Act of 1990: http://www.ada.gov/rainbow_river/rainbow_river_sa.htm

Dealing With treatment denials from Mental Health America: http://www.mentalhealthamerica.net/go/help/how-to-pay-for-treatment/dealing- with-treatment-denials

The Healthy Transitions website has a “Tools” section which provides a collection of publications related to transition planning from a variety of NYS organizations and government offices. Additionally, there are several checklists available that serve to both teach transition skills and support individuals in utilizing those skills in daily life: http://www.healthytransitionsny.org/skills_media/tool_show

The Office of Disability Employment Policy and the National Collaborative on Workforce and Disability offer two guides, one written for youth and one written for adults who advise youth, regarding the considerations involved when deciding if a disability should be disclosed and if so, how much to disclose: http://www.ncwd-youth.info/411-on-disability-disclosure-for-adults

11. Fathers – from Jim Swart, Fathers Network Coordinator

A story from The Autism News website regarding a martial arts studio that helps children with special needs enjoy the benefits of martial arts: http://www.theautismnews.com/2010/08/20/inspiring-possibilities/

Lee Stagni, the father of a 21 year old daughter who has a rare metabolic disorder called Propionic Acidemia, has started a blog for fathers that chronicles his experiences and asks for input from other dads who have a child with a disability: http://thespecialparent.blogspot.com/

12. Other Links:

The Drug Enforcement Agency is hosting National Take-Back Day on Saturday, September 25, 2010 to provide an opportunity for the public to surrender expired, unwanted, or unused pharmaceutical controlled substances and other medications for destruction. For more information or to find a collection site near you visit: http://www.deadiversion.usdoj.gov/takeback/

Protect Tomorrow is a national education awareness campaign that reminds parents about the importance of childhood immunizations: http://www.aap.org/protecttomorrow/

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

And NYS Affiliate Organization of Family Voices

Links Digest- Volume 101 October 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Deadline to apply for Partners in Policymaking is October 15th

Learn more about the program here: http://www.ilr.cornell.edu/edi/pip/index.cfm or to apply for the 2011 class visit here: http://www.ilr.cornell.edu/edi/pip/class_application.cfm

Health Reform Implementation

September 23rd marked the implementation of several key features of healthcare reform. HealthCare.gov provides a review here: http://www.healthcare.gov/news/factsheets/overview.html

HealthCare.gov has been developed as a one-stop shop for learning more about health care reform implementation and available insurance options, both public and private, in each state. A companion website www.CuidadodeSalud.Gov has just been launched to provide the same services for Spanish-speaking Americans. The press release announcing the site is available here: http://www.hhs.gov/news/press/2010pres/09/20100908a.html

This site from the NYS Insurance Department provides a listing of proposed rate increases health insurance companies have filed with the department for prior approval and their approval status. Employees should receive notice of these rate filings from their employers directly. Information regarding public comment periods is included and once compiled, public comments will be posted. The site will be updated as more filings are received, public comments are released, and rate increases are either approved or denied. State regulation is the primary safeguard in preventing unjustified insurance rate increases, so it is important that consumers monitor and participate in the process: http://www.ins.state.ny.us/health/prior_app/prior_app.htm

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

How does a bill become a law in NYS? Learn more here: http://www.bcnys.org/inside/sb/billlaw.htm

Pamela Wright, MA, MSW of Wrightslaw offers “The Art of Writing Letters”: http://www.wrightslaw.com/advoc/articles/letters.draft.htm

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

Access for Athletes is a program of the Challenged Athlete Foundation which enables participation in sports by providing financial resources for adaptive sports equipment, sports prosthetics, training and competition. The 2011 grant application process is now open. Deadline to apply is December 1st: http://www.challengedathletes.org/programs/access_for_athletes.htm

This chart from the Medicare Rights Center lists charities that assist with prescription co-payments. Although written to assist Medicare beneficiaries with out-of-pocket drug costs, the programs are available to those who are not enrolled in Medicare drug plans as well: http://www.medicarerights.org/pdf/copay_charities.pdf

3. Meeting health needs at school (i.e. What are the legal obligations of schools to provide health-related services and therapies? What are 504 accommodations to assure equal access?)

504 plan templates and suggested accommodations for various disabilities and medical conditions can be found at: http://specialchildren.about.com/od/504s/qt/sample504.htm

The Technical Assistance Center on Social Emotional Intervention for Young Children explains the 6 steps involved in creating a positive behavior support plan for pre-school aged children here:

http://www.challengingbehavior.org/explore/pbs/process.htm

Managed Care Resources, Inc. provides a listing of terms and definitions commonly used in the managed care industry: http://www.mcres.com/mcrdef.htm

The Social Security Administration offers a guide to Social Security benefits for children with disabilities, linked here in both English and Spanish: http://www.ssa.gov/pubs/10026.pdf http://www.ssa.gov/espanol/10926.html

The hallmark of parent to parent support is the moment when you see your life reflected in the life of another parent and know that there is much you share, often regardless of specific diagnosis or even if you have ever previously met. This recent blog entry from Hopeful Parents will likely provide such a moment: http://www.hopefulparents.org/blog/2010/9/28/im-no-expert.html

Family Voices of Wisconsin has released “Shared Participation: Strategies to Increase the Voice of Families from Diverse Backgrounds as Partners and Advisors.” The report is based on the experience of Latino, African-American, and Native American parents of children and youth with special needs and discusses perceived barriers to working in partnership with professionals on decision-making, recommendations for supporting partnerships and decision-making, and recommendations for parent participation on advisory committees: http://www.fvofwi.org/Publications/SharedParticipation.pdf

For youth who are learning to manage their health needs, Healthy Transitions offers this video on the value and use of health diaries: http://healthytransitionsny.org/skills_media/video_show/5

A guide to maintaining emergency health information from the Savvy Health Care Consumer Series, a project of The Center for Disability Issues and the Health Professions: http://www.cdihp.org/pdf/emergencyv1.pdf

Preparing for a disaster or emergency situation should be a collaborative effort between an individual, their family, and those in the family’s support network. This guide from FEMA and The American Red Cross is written to assist in planning for persons with disabilities and other special needs: http://www.fema.gov/pdf/library/pfd_all.pdf

Confused about whether the goal of a medical home should be patient-centered care, family-centered care, or both? The Institute for Patient-and Family-Centered Care explains the subtle, but important differences: http://www.ipfcc.org/faq.html

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

National Direct Support Professionals Recognition Week was celebrated in September. The press release from the U.S. Departments of Health and Human Services and Labor can be found here: http://www.hhs.gov/news/press/2010pres/09/20100916a.html

To nominate a Direct Support Professional for recognition through the Difference Makers Program, a combined effort of Parent to Parent of NYS and the Direct Support Professional Alliance of NYS, visit: http://www.parenttoparentnys.org/PDFs/difference%20makers.pdf

This article, written by a graduate student from the LBJ School of Public Affairs at The University of Texas at Austin, explores the benefits of participation by individuals with developmental disabilities in traditional volunteer opportunities to both the individuals who are volunteering and the organizations they serve. It offers practical strategies for implementing and managing a volunteer program that is inclusive of people with disabilities: http://www.utexas.edu/lbj/rgk/serviceleader/instructors/studentpaper9.php#top

disputes? What are the legal obligations of schools to provide health- related services and therapies?

Ian’s Law will take effect in NYS on January 1, 2011 providing enhanced protections for consumers with serious medical conditions who are affected by an insurer’s decision to discontinue a class of policies or contracts. Details of the enhanced protections are offered here: http://www.ny.gov/governor/press/081910PatersonSigns_IansLaw.html

The Social Security Administration has published proposed rules on revisions to the criteria for evaluating mental disorders, including intellectual disability/mental retardation, autism and other pervasive developmental disorders, and ADHD. These criteria are relevant to benefit eligibility determinations. The proposed rules are available for public comment until November 17, 2010: http://edocket.access.gpo.gov/2010/pdf/2010-20247.pdf

Healthcare is not all about specialty care for youth with special healthcare needs; it also includes maintaining and promoting general health and wellbeing. Healthy Transitions offers a module with many useful tools and links to foster self- determination in the process of setting health goals: http://healthytransitionsny.org/data/CEM_9_Setting_Health_Goals_2010.pdf

The National Dissemination Center for Children with Disabilities (NICHCY) offers detailed information on transitioning to adulthood: http://www.nichcy.org/EducateChildren/transition_adulthood/Pages/Default.aspx

11. Fathers – from Jim Swart, Fathers Network Coordinator

Bullying has been a topic of news programs and talk shows recently; the story of a father who went on a school bus to confront the bullies who were harassing his child with special needs is still making news. Sometimes our children are easy targets for bullies and as a parent what are we to do? The links below from families.com give tips on how to protect your child and stop the bullying: http://special-needs.families.com/blog/protect-your-special-needs-child-from- bullying http://special-needs.families.com/blog/can-bullying-be-stopped-before-it-starts

Fathers who are divorced are often pegged as “deadbeat dads” in the news. Rarely are stories heard about the dads who will make sacrifices to be with their children as much as they can. Kelly Jackson writes a wonderful article for Parenting Special Needs magazine about a dad who “gets it”: http://parentingspecialneeds.org/article&article=331

12. Other Links:

The NYS Parent Education and Awareness Program educates divorcing or separating parents about the impact of their breakup on their children. Parents are taught ways they can reduce stress of family change and protect their children from the negative effects of ongoing parental conflict: http://www.nycourts.gov/ip/parent-ed/

“Get Covered. Get in the Game.” is an outreach campaign directed at coaches and parents of children who play (or would like to play) team sports to ensure that families are aware of insurance coverage options offered through Child Health Plus and Medicaid. Lack of insurance can be a barrier to sports participation due to factors such as the cost of physical exams and fear of injuries. The following link provides numerous fact sheets and outreach materials that can be used by team coaches and parents to get the word out. Share one with your child’s coach today and ask that your school district share the information as well: http://www.insurekidsnow.gov/professionals/campaigns/getcovered/newyork/index .html

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

And NYS Affiliate Organization of Family Voices

Links Digest- Volume 102 November 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Health Reform Implementation

The Joint Center for Political and Economic Studies has issued a report detailing how health care reform addresses the issue of racial disparities in health related services and health care outcomes. The report entitled: “The Patient Protection and Affordable Care Act of 2010: Advancing Health Equity for Racially and Ethnically Diverse Populations” is available for download at no charge from their website: http://www.jointcenter.org/hpi/sites/all/files/PatientProtection_PREP_0.pdf

In 2014 under a provision of the Affordable Care Act, insurers will be required to pay for “routine care” regardless of whether an insured is participating in a clinical trial. This means that care that would have been covered under the health insurance policy if the insured was participating in a standard treatment must be covered even if they elect to enroll in a clinical trial. This applies to all clinical trials that treat cancer or other life-threatening diseases: http://www.cancer.gov/ncicancerbulletin/051810/page5

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

Healthy Transitions offers a video on how to help someone with a developmental disability prepare for surgery. The video, “Preparing for an Operation”, can be found in the “Scheduling an Appointment” section on their video page: http://www.healthytransitionsny.org/skills_media/video_show

The following link provides information about preparing for a Social Security disability benefits or SSI disability benefits hearing: http://www.disabilitysecrets.com/disability-reflection-10.html

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

The following article discusses various types of Managed Care Plans and their impact on children’s’ health care. It includes a discussion of issues related to access, quality of care, and cost: http://education.stateuniversity.com/pages/2196/Managed-Care-Children.html

The Center for Medicare and Medicaid Services provides an overview of CHIP dental coverage: http://www.cms.gov/CHIPDentalCoverage/

3. Meeting health needs at school (i.e. What are the legal obligations of schools to provide health-related services and therapies? What are 504 accommodations to assure equal access?)

The Oley Foundation has outlined the importance of having an Individual Health Plan (IHP) for students with chronic health conditions. Although an IHP is not a legal document, if it’s included in your Childs IEP or 504 Plan it becomes part of that legal document. An IHP expands upon the health condition and how it relates to the individual child: http://www.oley.org/lifeline/IHP_IEP.html

New York State does not require schools to have a school nurse; however, if the school hires a school nurse, NYS Education law requires that they must hire a Registered Professional Nurse (RN). In this position statement, the NYS Association of School Nurses advocates that Licensed Practical Nurses (LPNs) can also play a valuable role under the supervision of a RN: http://www.nysasn.org/LPNPositionStatement.pdf

November is National Adoption Month. The NYS Citizens’ Coalition for Children provides support, information and advocacy for foster and adoptive parents and professionals in New York State, including those caring for children with developmental disabilities and special health care needs: www.nysccc.org

November is also a time to recognize military families. The National Defense Authorization Act (NDAA) for Fiscal Year 2010 has expanded the Exceptional Family

Member Program (EFMP). This program identifies service members who have family members with special medical or educational needs and determines whether these needs can be met at a new location when the service member is being considered for an assignment overseas. Under the expansion increased information and referral services will be available and families moving within the states will also be served: http://blog.govdelivery.com/usodep/2010/07/department-of-defense-exceptional- family-member-program.html

“Supporting Family Life for Children with Disabilities: What We Know and Don't Know” discusses children with disabilities within the child welfare system, specifically the difficulties in identifying and meeting their needs within the context of families: http://ici.umn.edu/products/impact/191/over2.html

Understanding cultural disparities and cultural diversity is important while providing support and assistance to families. The following article provides some current statistics and perspective on cultural disparities as it relates to family-centered care: http://esciencenews.com/articles/2010/05/19/study.finds.racial.ethnic.disparities.fa mily.centered.care.kids.with.special.health.needs

OpenNotes is a demonstration project started in the summer of 2010 which studies the effect of increased transparency in the medical record. Approximately 100 physicians and 25,000 patients have agreed to share information electronically, including electronic access to the medical record for 12 months. Learn more here: http://www.myopennotes.org/

The Center for Children with Special needs at Seattle Children’s Hospital has a variety of record keeping systems available, many of which help your child become involved in the process: http://cshcn.org/planning-record-keeping

7. Parent-professional collaboration strategies. How can families work with their health care provider to secure quality care and coverage for

their child? How can health care provider and families communicate more effectively? What are effective health advocacy strategies? What is a “medical home” and how can parents access it for their child with special health needs?

The following link provides some tips for communicating effectively with your child’s health care providers: http://www.medicalhomeportal.org/living-with-child/caring-for-children-with- chronic-conditions/managing-and-coordinating-care/communication-guide

The following article talks about family-centered rounds which are designed to get parents more involved in decisions about their child’s care during hospitalizations: http://www.reuters.com/article/idUSTRE65R4A620100628

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

Changes in how Medicaid Service Coordination services are delivered to eligible families took effect on October 1, 2010. OPWDD (Office for People with Developmental Disabilities) provides information regarding the new program framework and associated changes here: http://www.omr.state.ny.us/images/hp_msc_framework.pdf

A comparison of Home and Community Based Services Waivers offered through the Office of Mental Health, OPWDD, and the Bridges to Health program (for children in foster care or under the supervision of the Division of Juvenile Justice and Opportunities for Youth) is offered here: http://www.ccf.state.ny.us/Initiatives/ChildPlan/cpResources/ComparisonOfWaivers .pdf

The Office of Mental Health offers this guide to patient rights for those who receive outpatient mental health services: http://www.omh.state.ny.us/omhweb/patientrights/outpatient.pdf

The Office of Mental Health offers this guide to patient rights for those who receive inpatient mental health services: http://www.omh.state.ny.us/omhweb/patientrights/InRtsWeb.pdf

"Embedding Health Outcomes in the Individualized Education Program" is a video recording of a 40 minute teleconference that provides information and specific examples of health related goals for an IEP. This recording is available, at no cost, from the Wisconsin Department of Public Instruction web site: http://dpimedia.wi.gov/main/Viewer/?peid=f44dfa70439241dd85e99cce0cb70e26

New Hampshire's Center for Medical Home Improvement has been awarded $1.3 million by the federal government to create a National Health Care Transition Center for Youth with Special Health Care Needs. Mallory Cyr is working with the center and shares some of her experiences in making the transition to adult care providers and college as a young adult with chronic health issues here: http://www.seacoastonline.com/articles/20100705-NEWS-7050328

11. Fathers – from Jim Swart, Fathers Network Coordinator

How does an MTV series fit into the world of disability? The “World of Jenks”, from award-winning documentary filmmaker Andrew Jenks, tells the story of inspirational strangers living their everyday lives. This episode focuses on Chad, a 20 year old living with Autism. Jenks finds that autism is not what he thought it was and witnesses the struggles Chad encounters everyday in order for people to understand and accept him: http://www.mtv.com/videos/world-of-jenks-ep-2-cant-make-me- be/1647734/playlist.jhtml

What do you think about disability, sports and the fact that losing is part of sport? One father thinks his child should be allowed to lose in a sport, just as any child will: http://www.parentdish.com/2010/05/13/opinion-disabled-children-should-be- allowed-the-dignity-of-losi/

12. Other Links:

The following information may be of interest to families of children with IEPs. Under a cooperative agreement with the U.S. Department of Education’s Office of Special Education Programs (OSEP), Project Forum at the National Association of State Directors of Special Education (NASDSE) surveyed all states to examine their current practices regarding the implementation of standard-based IEPs. Standard- based IEPS are developed around the framework of state grade-level academic standards. A summary of what was learned in the study is available here. A total of 41 states responded; NYS was one of 5 states that indicated they were not using, implementing, or developing a standards-based IEP: http://projectforum.org/docs/Standards-BasedIEP-ImplementationUpdate.pdf

The California Department of Developmental Services provides this guide to adaptations, changes, and tools that can be used to support the participation of those with developmental disabilities on boards and committees. Editor’s note: it would have been preferable if the guide was entitled “Ways to Make Complex

Information Understandable” http://www.dds.ca.gov/ConsumerCorner/WaysComplex.cfm

The Early Intervention Partners Training Project is scheduled to be held in Saratoga Springs for the Northeast Region (Albany, Clinton, Columbia, Essex, Franklin, Fulton, Greene, Hamilton, Montgomery, Otsego, Rensselaer, Saratoga, Schenectady, Schoharie, St. Lawrence, Warren, and Washington counties). For more information go to http://www.eifamilies.com/training.asp

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986

Parent to Parent of NYS

New York's Family to Family

Health Care Information and Education Center

And NYS Affiliate Organization of Family Voices

Links Digest- Volume 103 December 1, 2010 As part of the Family to Family Health Care Information and Education Center, Parent to Parent of NYS has established the Links Digest to provide links relevant to the issues of health care. Below is the most recent listing of website links which we have found valuable and hope they will be of benefit to others.

Wishing all a happy holiday season!

Health Reform Implementation

The Department of Health and Human Services has issued its first guidance to the States regarding the establishment of a Health Insurance Exchange. It is expected that public comment regarding proposed regulations will be sought in 2011. Learn more about the process here: http://www.healthcare.gov/center/regulations/guidance_to_states_on_exchanges.h tml

The Affordable Care Act includes increased funding for home visiting programs. Healthy Families NY offers culturally sensitive home-based services to isolated and at-risk expectant and new parents. Long-term in-home services are available until the child goes to school or Head Start: http://www.healthyfamiliesnewyork.org/

1. Advocacy 101 – items that help strengthen advocacy skills – (Communication skills, parenting skills, letter writing, speaking with professionals, asking questions)

The Suicide Prevention Center of New York has released their first newsletter. View it here: http://www.preventsuicideny.org/uploads/SPCNY_Newsletter.pdf

Terri Mauro, About.com Guide to Special Needs Children shares “Special-Needs Advocacy: Seven Ways to Get Involved”: http://specialchildren.about.com/od/disabilityrights/tp/getinvolved.htm

2. Financing issues – health insurance and other ways to finance the costs of needed services (including grievances, denials and appeals – i.e. Strategies for Appealing Health Plan Decisions)

Family Voices offers this checklist of items to evaluate when considering coverage through a private insurance plan: http://www2.familyvoices.org/pub/hcf/pi-checklist.pdf

NYS offers a premium assistance program to assist families who would otherwise qualify for Family Health Plus obtain private, employer-sponsored insurance. More information is available here: http://wnylc.com/health/entry/82/

3. Meeting health needs at school (i.e. What are the legal obligations of schools to provide health-related services and therapies? What are 504 accommodations to assure equal access?)

KASA, Kids As Self Advocates, recently conducted a webinar/teleconference "Working with a Paraprofessional (one on one aide) in School: Using the KASA Paraprofessional Toolkit". A free recording of the webinar (no recording key is required) is available at : https://www323.livemeeting.com/cc/familyvoices/view?id=JJ2PRS

To order your copy of the Paraprofessional Toolkit, click “Download the order form” on the right side of the page at: http://fvkasa.org/index.php

The American Academy of Pediatrics offers this list of potential services and accommodations for adolescents with ADHD who will be transitioning to undergraduate study (click visitor to view the page if you prefer not to register): http://www.healthychildren.org/English/health- issues/conditions/adhd/pages/College-Support-Services-and-Accomodations-for- Adolescents-with-ADHD.aspx

The Institute for Basic Research in Developmental Disabilities (IBR), a program of the Office for People with Developmental Disabilities (OPWDD), has served New Yorkers for more than 40 years. They conduct research into the causes and manifestations of developmental disabilities; develop methods to improve the diagnosis, prevention, and treatment of developmental disabilities; provide specialized biomedical, psychological, and laboratory services to individuals with developmental disabilities and their families; and educate the public and

professionals regarding the causes, diagnosis, prevention, and treatment of developmental disabilities. Learn more about IBR here: http://www.omr.state.ny.us/ibr/index.jsp

The Consortium for Citizens with Disabilities (CCD) has a new web site dedicated to information about the critical importance of the Social Security disability, survivor, and retirement insurance programs for people with disabilities and their families. There is also a helpful Fact Sheet that explains how the Social Security & SSI Disability programs differ: http://disabilityandsocialsecurity.org/index.html

Understanding cultural diversity and disparities is important while providing support and assistance to families. The following article provides some current statistics on racial and ethnic disparities in the provision of family centered care: http://esciencenews.com/articles/2010/05/19/study.finds.racial.ethnic.disparities.fa mily.centered.care.kids.with.special.health.needs

“Cultural Competence: It All Starts at the Front Desk”, an article from the National Center for Cultural Competence, explores the cultural competency issues that can be encountered at the “front desk”, encourages parents to speak-up and advocate for improvements when necessary, and offers suggested guidelines for agencies, practices, clinics, and hospitals: http://www11.georgetown.edu/research/gucchd/nccc/documents/FrontDeskArticle. pdf

It is important to keep medical professionals updated regarding school progress both academically and as it relates to any school-based therapies. Find a checklist for keeping educational records here: http://www.familyconnect.org/parentsite.asp?SectionID=72&TopicID=346&Docume ntID=3944

Momentum to adopt electronic health records that include patient access to those records is increasing. MyChart is one example of such a system currently being used by the University of Iowa Hospitals and Clinics in Iowa City: http://www.desmoinesregister.com/apps/pbcs.dll/article?AID=201011240326

“Special Needs Parents Need Emotional Support” addresses the powerful support sensitive and empathic professionals can provide to parents during developmental milestones and transitions: http://www.eduguide.org/Parents-Library/Special-Needs-Parents-Need-Emotional- Support-1129.aspx

The American Academy of Pediatrics offers this one-page fact sheet on provisions to support the development of medical homes in the health reform law: http://www.aap.org/advocacy/washing/MedicalHomeOnePager.pdf

8. Understanding Medicaid funded Waiver Services (Including the philosophy of individual and family-centered supports)

The Department of Health offers an online database with information about home health agencies and hospice programs in New York searchable by county: http://www.homecare.nyhealth.gov/index.php

CHIPRA, the Children’s Health Insurance Program Reauthorization Act of 2009, streamlined citizenship documentation requirements for those applying for Medicaid and Child Health Plus: http://www.familiesusa.org/assets/pdfs/Streamlining-Cit-Doc.pdf

In November of 2010, the Centers for Medicare and Medicaid services issued new rules that require equal visitation rights for all patients: http://www.whitehouse.gov/blog/2010/11/17/new-rules-require-equal-visitation- rights-all-patients

This Executive Summary from the Institute for Patient-and Family-Centered Care, issued prior to the more recent legislation above, explains why it is necessary to shift the paradigm from family members and trusted friends as “visitors” to family members and trusted friends as partners in the care and support of a hospitalized patient:

http://www.ipfcc.org/visiting.pdf

GINA, the Genetic Information Nondiscrimination Act, is a landmark federal law that protects individuals from the misuse of genetic information in health insurance and employment: http://www.ginahelp.org/

The resource “Health Care Choices: Who Can Decide?”, issued by the Office for People with Developmental Disabilities in March 2008, discusses informed consent, health care proxies, do-not-resuscitate orders, the health care decisions act, and living wills. It familiarizes the reader with the health care decision options available in NYS and discusses how treatment preferences can be documented in advance: http://www.omr.state.ny.us/hp_healthtext.jsp#Introduction

The following guidebook from the Elizabeth M. Boggs Center on Developmental Disabilities at the Robert Wood Johnson Medical School is an excellent tool for learning about transition from pediatric to adult health care. Entitled “Being a Healthy Adult: How to Advocate for your Health and Health Care” it includes terms and definitions, self advocacy tips, and tools on how to prepare for appointments to ensure the best outcome. It is available in English and Spanish: English: http://rwjms.umdnj.edu/boggscenter/products/documents/TransitiontoAdultHealthc are-EN-complete.pdf

Spanish: http://rwjms.umdnj.edu/boggscenter/products/documents/TransitiontoAdultHealthc are-SP-complete.pdf

11. Fathers – from Jim Swart, Fathers Network Coordinator

From the news:

Dogs have long been “Man’s best friend”; however they are also being used as therapeutic companions to help children with autism: http://www.nj.com/news/index.ssf/2010/10/bergen_county_dogs_unique_tric.html iPads have become a popular therapeutic tool opening up avenues of communication and entertainment for some people with disabilities: http://www.nytimes.com/2010/10/31/nyregion/31owen.html

12. Other Links:

The National Institute of Dental and Craniofacial Research at the National Institutes of Health offers “Dental Care Every Day: A Caregiver's Guide”: http://www.nidcr.nih.gov/OralHealth/Topics/DevelopmentalDisabilities/DentalCareE veryDay.htm

“Preparation for Postsecondary Life for Students with Disabilities” is a policy brief which seeks to identify collaborative strategies states have implemented to address the needs of students with disabilities whose IEP transition services specify postsecondary career and technical education, vocational rehabilitation and/or immediate employment upon departure from secondary school: http://www.projectforum.org/docs/PreparationforPostsecondaryLifeforStudentswith Disabilities.pdf

● Have you found valuable links that you would like to share? Please send them to Michele Juda at [email protected] 1-800-305-8817

● If you would like to speak to someone regarding your child with special health care needs, contact Michele at the above-referenced number.

● Would you like to speak to Jim Swart, Regional Coordinator supporting our Fathers’ Network? Call 1-800-305-8817 or email [email protected]

√ our website at www.parenttoparentnys.org

Janice Fitzgerald, Executive Director, Parent to Parent of NYS P.O. Box 1296, Tupper Lake, NY 12986