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Advocacy for an Everyday Life Presented by: KEPRO SW PA Health Care Quality Unit (KEPRO HCQU) December 2017 eh Disclaimer Information or education provided by the HCQU is not intended to replace medical advice from the individual’s personal care physician, existing facility policy, or federal, state, and local regulations/codes within the agency jurisdiction. The information provided is not all inclusive of the topic presented. Certificates for training hours will only be awarded to those attending the training in its entirety. Attendees are responsible for submitting paperwork to their respective agencies. 2 1 Objectives • Discuss the importance of promoting equal treatment for people with intellectual and developmental disabilities (I/DD) • State ways for caregivers to practice advocacy for persons with I/DD in all interactions • Recall ways that caregivers can help an individual to make choices and enjoy an “Everyday Life” 3 What is Advocacy? The act or process of supporting a cause; pleading in favor of something (American Heritage Dictionary, 2011) 4 2 The Need for Advocacy for People with I/DD • Historical treatment of people with I/DD • Stigma associated with having a disability • Disparities between people without disabilities and those with a disability 5 Results of Advocacy • Protection of the individual’s civil and constitutional rights • Improved services to meet individual preferences and desires 6 3 Results of Advocacy – continued • Full access to and participation in community life • Recognition of people with I/DD as valued and contributing members of society 7 Tools to Promote Advocacy • Self‐Determination • Positive Approaches • Everyday Lives • Laws • People First Language • Education 8 4 Self‐Determination • Freedom • Authority • Responsibility • Support (Self‐Advocacy Association of NY State, n.d.) 9 Everyday Lives • Choice • Freedom • Control • Success • Quality • Contributing to the Community • Stability • Accountability • Safety • Mentoring • Individuality • Collaboration • Relationships (PA Dept. of HS, Everyday Lives, 2016) 10 5 Everyday Lives: Choice • “Nothing about me without me” – Services received – Who provides support – Where to live and with whom – Where to work – Recreation and leisure – Individualized day activities (PA Dept. of HS, Everyday Lives, 2016) 11 Everyday Lives: Control • Relationships • Budgets • Medical Issues • Planning • Activities 12 6 Everyday Lives: Quality • Quality of life improves when people have a voice • Strive for quality in – Supports and services provided – Recognition of the person as an individual – All daily interactions with that person 13 Everyday Lives: Stability and Safety • Stability and safety lead to a sense of security – Knowing that needs will be met – Feeling safe at home, work, school and in the neighborhood – Feeling secure that all changes are made with input and permission 14 7 Everyday Lives: Individuality • Call a person by his or her name • Offer activities based on likes and interests • Allow privacy and freedom of choice • Allow the individual to do things his or her way, within safe measures 15 Everyday Lives: Relationships • People need people – Family – Partner – Friends – Neighbors – Community 16 8 Everyday Lives: Success • Freedom from poverty • Living independently with support • Being healthy • Having friends • Doing something meaningful 17 Everyday Lives: Contributing to the Community • Voting • Obtaining gainful employment • Volunteering • Leisure and recreational activities • Attending religious services of choice • Neighborhood activities 18 9 Everyday Lives: Accountability • Government • Agencies • Support People 19 Everyday Lives: Mentoring • Helping others know what to do – Individuals and families – Supports coordinators – Senior support staff – Community 20 10 Everyday Lives: Collaboration • Working together for the person’s best interest – Between all support service providers – Between the Office of Developmental Programs (ODP) and other offices within the Department of Public Welfare 21 People First Language Say… Instead of… People with disabilities The handicapped He has Down Syndrome He’s Down’s Accessible parking Handicapped parking She’s confined to a She uses a wheelchair wheelchair Communicates with a device Talks through a box (Kathie Snow, Disability is Natural, 2001) 22 11 Positive Approaches • A way of thinking about people and interacting with them • Supports people to grow and develop • Shifts the focus from control over the person to collaboration with the person. (Positive Practices/Approaches, PA ODP, 2016) 23 Laws • American Disability Act of 1990 • Protect civil and constitutional rights • PA Disability Law Project • PA Disabilities Rights Network 24 12 Education • Calms fears • Corrects misconceptions • Empowers people to be advocates 25 EVERYDAY LIVES ARE FOR EVERYONE 26 13 Using the Tools of Advocacy in Your Daily Work • Lead by example • Practice patience 27 Using the Tools of Advocacy in Your Daily Work ‐ continued • Explore laws and policies and knows the channels to seek justice • Promote inclusion of people with developmental disabilities 28 14 Using the Tools of Advocacy in Your Daily Work ‐ continued • Focus on abilities, not disabilities • Work to remove barriers 29 Using the Tools of Advocacy in Your Daily Work ‐ continued • Challenge assumptions • Encourage self‐advocacy 30 15 Living vs. Existing • Getting a birthday card in the mail • Choosing a job and feeling like a productive member of society • Holding hands with someone special • Having someone tell you they love you • Being able to take part in a relationship with someone of your own choice • Choosing how to spend time 31 Be an Advocate • Work to provide a good quality of life • Allow individuals to choose for themselves • Assist with community integration • Model appropriate behavior 32 16 Related Training Topics • Behavior is Communication • Positive Approaches 33 References • American Association on Intellectual and Developmental Disabilities (aaidd). (n.d.). Definition of Intellectual Disability. Retrieved November 30, 2017, from http://www.aamr.org/About_AAIDD/MR_name_change.htm • American Association on Intellectual and Developmental Disabilities (aaidd). (2015, December). Issue Brief: Self‐Determination and Self‐ Advocacy by People with IDD. Retrieved November 30, 2017, from http://aaidd.org/docs/default‐source/National‐Goals/self‐determination‐ and‐self‐advocacy‐by‐people‐with‐idd.pdf?sfvrsn=0 • American Heritage® Dictionary of the English Language, Fifth Edition by Houghton Mifflin Harcourt Publishing Company. (2011). Advocacy. Published by Houghton Mifflin Harcourt Publishing Company. Retrieved November 30, 2017, from http://www.thefreedictionary.com/advocacy • Disability Advocacy. (2015). Individual Advocacy. Retrieved November 30, 2017, from http://da.org.au/advocacy/individual‐advocacy/ 34 17 References • Disability is Natural. (2001) People First Language Articles. Kathie Snow. Retrieved November 30, 2017, from https://www.disabilityisnatural.com/pfl‐articles.html • Disability Rights Washington. (2012, June) What is Advocacy? Retrieved November 30, 2017, from http://www.disabilityrightswa.org/what‐ advocacy • Legal Information Institute (LII) –Cornell University Law School. (n.d.). Civil Rights. Retrieved November 30, 2017, from https://www.law.cornell.edu/wex/civil_rights • Pennsylvania Department of Human Services. (2016). Everyday Lives. Retrieved November 30, 2017, from http://www.dhs.pa.gov/publications/EverydayLives/ • Pennsylvania Department of Human Services. (n.d.) Intellectual Disabilities Services. Retrieved November 30, 2017, from http://www.dhs.pa.gov/citizens/intellectualdisabilitiesservices/index.htm #.VyoTck_ruM9 35 References • Public Broadcasting System (PBS). (2009, October). Body & Soul: Diana & Kathy. Retrieved on November 30, 2017, from http://www.pbs.org/programs/body‐and‐soul/ • Searle, J. (n.d.) My Life –My Story. Retrieved November 30, 2017, from http://slideplayer.com/slide/8600573/ • Self‐Advocacy Association of New York State. (n.d.) Principles of Self‐ Determination from the Robert Wood Johnson Foundation’s National Program Self‐Determination for Persons with Developmental Disabilities. Retrieved November 30, 2017, from http://www.sanys.org/determination/deter_2.htm • The Center for Self‐Determination. (2012). Principles of Self‐ Determination. Retrieved November 30, 2017, from http://www.centerforself‐determination.com/ 36 18 To register for future trainings or for more information on this or any other physical or behavioral health topic, please visit hcqu.kepro.com 37 Test and Evaluation Please take a few moments to complete the test and evaluation forms for this training. Thank you! 38 19 Treatment of People with Disabilities: An Historical Perspective Throughout history society has held differing views regarding people with disabilities. It is important to understand the past in order to improve the future. Historical societal views of those with mental retardation include the following: Antiquity Period: Renaissance Period: Charitable Obligation vs. Biological Causes vs. Superstition Punishment by God By the 1500’s, there were advances in studies During this period, society felt an obligation to those surrounding how the human body functions. with a disability, but they also believed that the Despite these advances, the belief in the possession child’s disability was a punishment from a higher or bestial nature of people with mental disabilities power. In records dating back to 2000
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