In Support of People With Developmental Disabilities and Their Families:

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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_at_hs
ri.org
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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?

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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

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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

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Lets 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.

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Budget Stress and Accelerated Service Demand
Resources
Gary Smith, HSRI
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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.

Hes broke. Must be a direct support worker
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Its A Living Museum ...
Sheltered Work
Customized Employment
Day Habilitation
Group Homes
IEP, ISP, IHP, IWRP, IFSP, IPP
Family Support
Token Economies
Public Institutions
Apartments
Supported Living
Supported Work
ICFs-MR
1956... 1962... 1972 ... !976...1983... 1987..
.1992... 1997.. 2000... 2003
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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

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"We offer our consumers choice and
self-determination in the least restrictive
environment. They can package plastic forks,
knives, and spoons OR sort nuts and bolts."
Dont buy it.
Helping Hands Workshop
Professionals know what words to say but they
keep doin the same old thing. Hes not foolin
me!
Jazzyé
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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
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Self-Advocates Say...
That Self-Determination means that...

• 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.

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They
HEY!!! No eating in the TV Room!

• Wont let me eat in the TV room. drink soda on
  the couch or eat popcorn Or sleep in the TV
  room either
• Wont let us wear make-up.
• Make us go to bed at 9pm
• Wont let me out on a date.
• Wont 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.
• Dont let me see the movies I want.
• Wont let me give a birthday card to staff.
• Say that if I have something in my lunch that I
  dont like, I cant give it away.

Are you kidding me?
Silly Rules!!!
Jazzyé
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Working TowardSustainable Futures
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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.

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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.

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

• Governments role will be what it will be
  important essential yet modest.
• Medicaid funding is essential, but lets 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
  

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What Can We DoTo Develop a Sustainable Future?

1. Settle on where we are going
2. Commit to Self-Direction
3. Assure that our service system can get us there

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1. Settle on where we are going Two 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?
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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.

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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

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2. Believe in Self-Directed Systems

• Self Advocates want to take a lead in their own
  lives.
• Honor a persons disability
• Good support can help set a person free

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Heres 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
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But its not always easy It can be a jungle out
there!
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Two Myths About Disability

• People with disabilities cant do anything.
• People with disabilities can do anything if the
  persevere or try hard or get help.

Honor The Disability
Mark OBrienBreathing Lessons
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Considering the Rub... Who Is The Self In
Self-Determination?
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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.

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... 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?
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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
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Just OneThing More

• Self Advocacy. Its more than individuals
  wanting to command and live life
• Its grown into a movement
• Standing together self advocates have opinions
  opinions that matter

Check out Self Advocates Becoming Empowered at
www.sabeusa.org
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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
  programs.
• We have the right to make our own decisions with
  or without the support of others.
• WE CAN RUN OUR LIVES.

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A Word About YOUTH

• Younger self-advocates have progressiveexpectatio
  ns about their lives.
• They reject the status-quo that todaysservice
  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
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www.theriotrocks.org
Its Free but contributions are most welcome
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3. Assure that our service system can get us
there
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Meeting Individual Needs
A Three Legged Approach!
Individuals

Community
Government
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1st leg Government

• A need to settle on a direction
• A need for greater efficiency
• A need for greater collaboration

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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...)

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Collaboration
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

• Across-populations
• Across systems systems integration (state
  developmental disabilities services, social
  security, TANF, Medicaid, schools)
• Across provider networks

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2nd leg Community

• Enlisting community businesses
• Enlisting faith-based organizations
• Enlisting community serving organizations

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How We Think Of Some Communities
Lack of Services
Gangs
Drugs
Poverty
Violence
Language Barriers
School Failure
Unemployment
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Another Way To Think....
Community Assets
Local Institutions
Community Serving Organizations
Individuals Groups of People
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3rd leg People Helping People



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Who Are We?
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People Helping People

• Toy Exchanges Equipment Exchanges
• Exchange Networks
• Micro-Loans
• Peer Support Networks

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A Closer Look
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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.
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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
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Pathway to sustainablefutures will be different

• Each community, locality andstate is in a
  different spot
• Opportunities differ
• But its the same critical question What changes
  do we need to make to achieve the best possible
  outcomes for people and families going forward?

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The Challenge Is To Find Ways To ...

• Encourage, model and support an action
  biasconsistent 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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The Fundamental Issues to Overcome Are

• TechnicalCan we figure out ways to make the
  structure work in a technical sense?
• Political
• Do we have the will to make changes to the flow
  of money?
• Can we abandon program (slot) driven approaches?
• Can we move from supply centered to demand
  centered systems?

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So Lets Get Started!! Talk Discuss
Deliberate. Change!

• Change imposes choice.
• Choice imposes ambiguity.
• Ambiguity promotes discussion.
• Discussion promotes deliberation.
• Deliberation forms opinion.
• Opinion leads to action.

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Concluding Thoughts
Lets Agree to Change.

• Change imposes choice.
• Choice imposes ambiguity.
• Ambiguity promotes discussion.
• Discussion promotes deliberation.
• Deliberation forms opinion.
• Opinion leads to action.

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Need and Opportunity
A service system for people with disabilities
and others in need of support will have to be a
system in constant change. It has to be
continuously developed, if the 'customers' are
not to be left behind and to become hostages of
an outdated way of doing things." Alfred Dam
(undated)Denmark
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If not YOU, then who?