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In Support of People With Developmental Disabilities and Their Families:

In Support of People With Developmental Disabilities and Their Families:. Working Toward Sustainable Futures. John Agosta, Ph.D. Human Services Research Institute 7420 SW Bridgeport Road (#210) Portland, OR 97224 503-924-3783 jagosta@hsri.org. Topics. A bit of background and history

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In Support of People With Developmental Disabilities and Their Families:

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  1. In Support of People With Developmental Disabilities and Their Families: Working Toward Sustainable Futures John Agosta, Ph.D. Human Services Research Institute 7420 SW Bridgeport Road (#210) Portland, OR 97224 503-924-3783 jagosta@hsri.org

  2. Topics • A bit of background and history • Some honesty about our surroundings • Facing the challenge to build a Sustainable Future • What can we do about it? • What are YOU going to do about it?

  3. Some History … • 1950s and 1960s – Expansion of public institutions – Segregation • 1970s – Institutional reform –Community services take root • 1980s – Supports paradigm emerges – Family support gains momentum • 1990s-2000s – Institutional closings – Accelerated community services growth – Community reform – Self-advocates speak up

  4. Standing Back... • Much was accomplished and learned over the past 30 years • The footprint left by these efforts is undeniable. Thousands of people and their families depend daily on supports received through developmental disability systems. And the bar was forever raised. • The significant changes made were generally driven by evolving beliefs … systems flexed and changed in response…

  5. Let’s Be Honest About Our Surroundings… • Budget stress and accelerating service demand • Workforce shortages • Reliance on legacy systems • Continued push for community integration, participation, contribution… self direction.

  6. Increasing ServiceDemand Wait List Budget Stress and Accelerated Service Demand Resources Gary Smith, HSRI

  7. Work Force Shortages Are Real Providers have trouble hiring and keeping staff. Families have trouble hiring respite workers. Pay is low. Benefits are not always the greatest. There are often issues to overcome related to culture and staff. We imagine systems that are well staffed by well trained people. We compensate with a mountain of rules, pre-scripted routines and paperwork. He’s broke. Must be a direct support worker…

  8. It’s A Living Museum ... Sheltered Work Customized Employment Day Habilitation Group Homes IEP, ISP, IHP, IWRP, IFSP, IPP Family Support Token Economies Apartments Public Institutions Supported Living Supported Work ICFs-MR 1956... 1962... 1972 ... !976...1983... 1987.. .1992... 1997.. 2000... 2003

  9. Reliance on Old Waysof Doing and Thinking • ISPs, IHPs, IPPs… oh my! • Direct support staff aretraditionally thought of as sitters, attendants and skill trainers. And please fill out those forms! • People with disabilities are “clients,” “consumers” … are often taught to be passive care receivers… to do as they are told… to follow a routine… to simply go along…

  10. "We offer our consumers choice and self-determination in the leastrestrictive environment. They can package plastic forks, knives, and spoons OR sort nuts and bolts." “Don’t buy it.” Helping Hands Workshop “Professionals know what words to say but they keep doin’ the same old thing. He’s not foolin’ me!” Jazzyé

  11. Continuing the Push… “In the 1960’ s and earlier we were treated likeplants. You fed us, clothed us, kept us warm,and wheeled us out to feel the sun. In the 1970s and 80s you discovered we could be taught -- we could learn -- and we were treated like pets. You taught us all types of tricks and we stood by your side. But now it is the 1990s. We are not plants. We are not your pets. We are people like you and we want to be treated as real people. We want the same opportunities as anybody.” Dirk Wasano -- Hawaii Planning Council on Developmental Disabilities

  12. Meeting of Self-Advocates from six states (1999) Self-Advocates Say... • I am a person like all people. • I make my own choices. • I am the boss of my own life. • I make my decisions in my own life. • I do for myself… and not depend on others so much. That Self-Determination means that...

  13. “They”… HEY!!! No eating in the TV Room! Won’t let me eat in the TV room…. drink soda on the couch or eat popcorn … Or sleep in the TV room either Won’t let us wear make-up. Make us go to bed at 9pm Won’t let me out on a date. Won’t let me use the phone to call my girlfriend. Say if I want to go somewhere, everyone in the house has to want to go there too. Don’t let me see the movies I want. Won’t let me give a birthday card to staff. Say that if I have something in my lunch that I don’t like, I can’t give it away. Are you kidding me? Silly Rules!!! Jazzyé

  14. Working TowardSustainable Futures

  15. Potential Solutions... • Uncle Sam Saves The Day. Keep trying to get more money... • The Squeeze Play. Balance pressures with available funds... Lacking significant additional resources people are squeezed out or denied entry, or the services available are modified. • Tough Love. Restructure and retool... Work for a “Sustainable Future.”

  16. Tough Love! • Systems had serious problems before state budgets crashed. • As long as the pie was growing, systems could “afford” to work around their problems. • Funding growth will be slower than in the past and insufficient to buy our way out of problems. • In the present climate and for the foreseeable future, not addressing the problems will make a bad situation worse.

  17. Sustainable Futures … An action agenda anchored in values and committed to making the changesnecessary to secure the best outcomes possible for people with developmental disabilities and families.

  18. Assumptions • Government’s role will be what it will be… important… essential… yet modest. • Medicaid funding is essential, but let’s not define “support” by what is “Medicaid reimbursable” • We must look to each other and our communities to promote a culture of mutual aid… mutual support…

  19. What Can We DoTo Develop a Sustainable Future? • Settle on where we are going… • Commit to Self-Direction… • Assure that our service system can get us there…

  20. 1. Settle on where we are goingTwo World Views to Think Through A Society for All Choice Is the primary consideration so that… Is the primary consideration so that… Policy favors options that promote community integration and discourages, even eliminates, options that segregate people from their community. Choices that exemplify community integration or segregation are ALL equally acceptable Which is it in this room?

  21. Be Principled About… • A belief in community integration…. People want to live in the community and live a life like anyone else. • A belief in self-direction… People want to be in control of their own lives.

  22. The values foundation … • We have learned … • Individual/family direction works • Effective person-centered planning works • Integration and inclusion amplify resources • Supporting people to make contributions amplifies resources • Action pathway – Resolute pursuit of principles of person-centered supports based in inclusive communities

  23. 2. Believe in Self-Directed Systems… • Self Advocates want to take a lead in their own lives. • Honor a person’s disability • Good support can help set a person free

  24. Here’s a Thought… In life, there are four essential needs… • To have something to do… • To have someone to love… • To have something to believe in… • To have something to hope for… Lou Holtz addressing the Notre Dame football team, 2005

  25. But it’s not always easy… It can be a jungle out there!

  26. Two Myths About Disability • People with disabilities can’t do anything. • People with disabilities can do anything if the persevere… or try hard… or get help. Honor The Disability Mark O’BrienBreathing Lessons

  27. Self Directed? Family Directed? Provider Directed? State Directed? BrokerDirected? Considering the “Rub”... Who Is “The Self” In Self-Determination?

  28. When We Ask Self-Advocates... (In New Hampshire, Texas, Oregon, Colorado, North Carolina, Arizona, Idaho, Virginia, Missouri, Montana ...) • What or who helps you to be in control of your life? Very quickly someone will say... “My Parents.” And many will agree. • What or who keeps you from being in control of your life? Very quickly someone will say... “My Parents.” And many will agree.

  29. ... Yet Good SupportCan Set You Free! • Place the individual in meaningful position of power where his/her opinion is taken seriously (assume competency). • Listening well to the individual, including a 3rd party listener. • Provide the person good information. • Apply useful assistive technology. • Plan for meaningful supports to counterbalance the effects of intellectual disability. And so... What is “Bad” Support?

  30. Giving Back Belonging Community Integration Citizenship Self-Determination AGE of the PersonWith Disabilities Families can help -- Strong, positive support -- Self-determined individuals Adult Self-Advocates Young Children Self-advocates make decisions about their life. Families make most important decisions Family-Directed Supports Self -Directed Supports

  31. Just OneThing More… • Self Advocacy…. It’s more than individuals wanting to command and live life… • It’s grown into a “movement” • Standing together… self advocates have opinions… opinions that matter Check out Self Advocates Becoming Empowered at: www.sabeusa.org

  32. SABE Tells It Like It Is!(September, 2005) Listen To Us! • Close institutions. • Get us real jobs. • Close sheltered workshops. • Give US the money to run OUR lives. • Money follows the person means it is OURS not the program’s. • We have the right to make our own decisions with or without the support of others. • WE CAN RUN OUR LIVES.

  33. A Word About… YOUTH Younger self-advocates have progressiveexpectations about their lives. They reject the status-quo that today’sservice systems ladle out to them Life means more to them than a group home and a sheltered work placement. Tattoos all around! The future rests with them! Check out the National Youth Leadership Network at: www.nyln.org

  34. www.theriotrocks.org It’s Free… but contributions are most welcome

  35. The System Stinks! Agosta, ‘96 You can trust us.We’re professionals! What a relief. 3. Assure that our service system can get us there…

  36. Meeting Individual Needs A Three Legged Approach! Individuals Community Government

  37. 1st leg… Government • A need to settle on a direction… • A need for greater efficiency… • A need for greater collaboration

  38. Efficiency • Reform: person-centered system architecture • Disinvest from low value/high cost services • Medicaid! • New business models… Open markets • “Non-traditional” providers/direct purchase such as “self directed systems, microboards...)

  39. Collaboration …a mutually beneficial and well-defined relationship entered into by two or more organi-zations to achieve common goals. The relationship includes a commitment to a definition of mutual relationships and goals; a jointly developed structure and shared respons-ibility; mutual authority and accountability for success and sharing of resources and rewards. Michael Winer Collaboration • Across-populations • Across systems… “systems integration” (state developmental disabilities services, social security, TANF, Medicaid, schools…) • Across provider networks

  40. 2nd leg… Community • Enlisting community businesses • Enlisting faith-based organizations • Enlisting community serving organizations

  41. How We Think Of Some Communities Lack of Services Gangs Drugs Poverty Violence Language Barriers School Failure Unemployment

  42. Another Way To Think.... Community Assets Local Institutions Community Serving Organizations Individuals & Groups of People

  43. We Me Me Me 3rd leg… People Helping People = + +

  44. Who Are We?

  45. People Helping People • Toy Exchanges… Equipment Exchanges • Exchange Networks • Micro-Loans • Peer Support Networks

  46. Establishing a Sustainable Future for Individual and Family Supports Guiding Principles Individual and Family Outcomes State Agency Family Input and Guidance Multi-Tiered Approach to Individuals & Families Supportive Learning Community A Closer Look

  47. Family Support Cooperative Access to peer support and other supports available through a variety of community resources. Family Support Funds Those with higher needs receive additional services through “traditional” family support programs. Entry HCBS Waivers Other Programs Establishing a Sustainable Future for Individual and Family Supports Potential Demand for Services Includes all individuals with a developmental disability. Most live home with their family. Individuals withDevelopmental Disabilitiesand Their Families Entry Family-to-Family Peer Assistance and Exchange Networks Assistance from Businesses and Organizations, and other Public Agencies Families & Staff Family Support Funds Case mangers develop Support Plans for individuals n and families Other Service Programs Individuals and families with still higher needs access more intensive services.

  48. What Are You Going To Do About It? • What traditions, commitments and vision define us? • What assets can wecount on and leverage? • What alliances canwe forge? • What opportunities will we create? If I am only for myself, who is for me? And if I am only for myself, what am I? And if not now, when? Hillel

  49. Pathway to sustainablefutures will be different • Each community, locality andstate is in a different spot • Opportunities differ • But it’s the same critical question: What changes do we need to make to achieve the best possible outcomes for people and families going forward?

  50. The Challenge Is To Find Ways To ... • Encourage, model and support an “action bias”consistent with retooling... • Encourage, nurture andsupport alliances thatwork to mobilize energyto act... Anyone who has never made a mistake has never tried anything new. AlbertEinstein 

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