11

In Support of People With In Support of People With Developmental Disabilities and Developmental Disabilities and

Their Families:Their Families:

John Agosta, Ph.D.John Agosta, Ph.D.Human Services Research InstituteHuman Services Research Institute7420 SW Bridgeport Road (#210)7420 SW Bridgeport Road (#210)

Portland, OR 97224Portland, OR 97224503-924-3783503-924-3783

jagosta@hsri.orgjagosta@hsri.org

Working TowardWorking Toward Sustainable Futures Sustainable Futures

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TopicsTopics

A bit of background and historyA bit of background and history

Some honesty about our surroundingsSome honesty about our surroundings

Facing the challenge to build a Sustainable Facing the challenge to build a Sustainable FutureFuture

What can we do about it?What can we do about it?

What are YOU going to do about it?What are YOU going to do about it?

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Some History …Some History …

1950s and 1960s1950s and 1960s – Expansion of – Expansion of public institutions – Segregation public institutions – Segregation

1970s1970s – Institutional reform – – Institutional reform –Community services take rootCommunity services take root

1980s1980s – Supports paradigm emerges – Supports paradigm emerges – Family support gains momentum – Family support gains momentum

1990s-2000s 1990s-2000s – Institutional closings – Institutional closings – Accelerated community services – Accelerated community services growth – Community reform – Self-growth – Community reform – Self-advocates speak upadvocates speak up

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Standing Standing Back...Back...

Much was accomplishedMuch was accomplished and and learned over the past 30 yearslearned over the past 30 years

The footprint left by these efforts is undeniable.The footprint left by these efforts is undeniable. Thousands of people and their families depend Thousands of people and their families depend daily on supports received through developmental daily on supports received through developmental disability systems. And the bar was forever raised. disability systems. And the bar was forever raised.

The significant changes made were The significant changes made were generally generally driven by evolving beliefsdriven by evolving beliefs … systems flexed and … systems flexed and changed in response… changed in response…

55

Let’s Be Honest About Let’s Be Honest About Our Surroundings…Our Surroundings…

Budget stress and accelerating service Budget stress and accelerating service demanddemand

Workforce shortages Workforce shortages

Reliance on legacy systems Reliance on legacy systems

Continued push for community integration, Continued push for community integration, participation, contribution… self direction. participation, contribution… self direction.

66Gary Smith, HSRI

Wait List

Increasing

Service Demand

Resources

Budget Stress and Budget Stress and Accelerated Service DemandAccelerated Service Demand

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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.

He’s broke. Must be a direct support worker…

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It’s A Living Museum ...

Group Homes

Sheltered WorkDay Habilitation

Public Institutions

IEP, ISP, IHP, IWRP, IFSP, IPPFamily

Support

Supported Work

Token

Economies

Supported

Living

1956... 1962... 1972 ... !976...1983... 1987.. .1992... 1997.. 2000... 2003

Customized Employment

Apartments

ICFs-MR

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Reliance on Old WaysReliance on Old Waysof Doing and Thinkingof Doing and Thinking

ISPs, IHPs, IPPs… oh my!ISPs, IHPs, IPPs… oh my!

Direct support staff areDirect support staff aretraditionally thought of as sitters, attendants and traditionally thought of as sitters, attendants and skill trainers. And please fill out those forms! skill trainers. And please fill out those forms!

People with disabilities are “clients,” People with disabilities are “clients,” “consumers” … are often taught to be passive “consumers” … are often taught to be passive care receivers… to do as they are told… to care receivers… to do as they are told… to follow a routine… to simply go along… follow a routine… to simply go along…

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Jazzy

Helping Hands

Workshop

"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."“Don’t buy

it.”

“Professionals know what words to say but

they keep doin’ the same old thing. He’s

not foolin’ me!”

Continuing the Push…Continuing the Push…

““In the 1960’ s and earlier we were treated likeIn the 1960’ s and earlier we were treated likeplants. You fed us, clothed us, kept us warm,plants. You fed us, clothed us, kept us warm,and wheeled us out to feel the sun.and wheeled us out to feel the sun.

In the 1970s and 80s you discovered we could be taught -- In the 1970s and 80s you discovered we could be taught -- we could learn -- and we were treated like pets. You we could learn -- and we were treated like pets. You taught us all types of tricks and we stood by your side.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 But now it is the 1990s. We are not plants. We are not your pets.your pets.

We are people like you and we want to be treated as real We are people like you and we want to be treated as real people. We want the same opportunities as anybody.”people. We want the same opportunities as anybody.”

Dirk Wasano -- Hawaii Planning Council on Developmental DisabilitiesDirk 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.

Meeting of Self-Advocates from six states (1999)

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“They”…

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.

Silly Silly Rules!!!Rules!!!

Jazzy

Are you kidding me?

HEY!!!No eating in the

TV Room!

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Working TowardWorking TowardSustainable FuturesSustainable Futures

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Potential Potential Solutions...Solutions...

Uncle Sam Saves The Day.Uncle Sam Saves The Day. Keep trying to Keep trying to get more money... get more money...

The Squeeze Play.The Squeeze Play. Balance pressures with Balance pressures with available funds... Lacking significant available funds... Lacking significant additional resources people are squeezed additional resources people are squeezed out or denied entry, or the services available out or denied entry, or the services available are modified.are modified.

Tough Love.Tough Love. Restructure and retool... Work Restructure and retool... Work for a “Sustainable Future.” for a “Sustainable Future.”

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Tough Love!Tough Love!

Systems had serious problems Systems had serious problems before state budgets crashed.before state budgets crashed.

As long as the pie was growing, As long as the pie was growing, systems could “afford” to work systems could “afford” to work around their problems.around their problems.

Funding growth will be slower than in the past and Funding growth will be slower than in the past and insufficient to buy our way out of problems.insufficient to buy our way out of problems.

In the present climate and for the foreseeable future, not In the present climate and for the foreseeable future, not addressing the problems will make a bad situation addressing the problems will make a bad situation worse.worse.

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Sustainable Sustainable Futures …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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AssumptionsAssumptions

Government’s role will be what it Government’s role will be what it will be… important… essential… will be… important… essential… yet modest.yet modest.

Medicaid funding is essential, but Medicaid funding is essential, but let’s not define “support” by what let’s not define “support” by what is “Medicaid reimbursable”is “Medicaid reimbursable”

We must look to each other and We must look to each other and our communities to promote a our communities to promote a culture of mutual aid… mutual culture of mutual aid… mutual support… support…

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What Can We DoWhat Can We DoTo Develop a To Develop a

Sustainable Future?Sustainable Future? 1.1. Settle on where we are Settle on where we are

going…going…

2.2. Commit to Self-Direction…Commit to Self-Direction…

3.3. Assure that our service Assure that our service

system can get us there… system can get us there…

2020

1. Settle on where we are going1. Settle on where we are going Two World Views to Think ThroughTwo World Views to Think Through

Is the primary consideration so that…

Choices that exemplify community integration or segregation are ALL equally acceptable

Is the primary consideration so that…

Policy favors options that promote community integration and discourages, even eliminates, options that segregate people from their community.

Which is it in this room?

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Be Principled Be Principled About…About…

A belief in A belief in community integrationcommunity integration…. …. People want to live in the community and People want to live in the community and live a life like anyone else.live a life like anyone else.

A belief in A belief in self-directionself-direction… People want to … People want to be in control of their own lives.be in control of their own lives.

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The values foundation …The values foundation …

We have learned …We have learned … Individual/family direction worksIndividual/family direction works Effective person-centered planning worksEffective person-centered planning works Integration and inclusion amplify resourcesIntegration and inclusion amplify resources Supporting people to make contributions Supporting people to make contributions

amplifies resourcesamplifies resources

Action pathway – Resolute pursuit of Action pathway – Resolute pursuit of principles of person-centered supports principles of person-centered supports based in inclusive communitiesbased in inclusive communities

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2. Believe in Self-Directed 2. Believe in Self-Directed Systems…Systems…

Self Advocates want to Self Advocates want to take a lead in their own take a lead in their own lives.lives.

Honor a person’s Honor a person’s disability disability

Good support can help Good support can help set a person freeset a person free

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Here’s a Thought…Here’s a Thought…

To have something to do…

To have someone to love…

To have something to believe in…

To have something to hope for…

In life, there are four essential needs…

Lou Holtz addressing the Notre Dame football team, 2005

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But it’s not always easy…

It can be a jungle out there!

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Two Myths About Disability Two Myths About Disability

People with People with disabilities can’t do disabilities can’t do anything.anything.

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

Mark O’BrienBreathing Lessons

Honor The Disability

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Considering the “Rub”...Who Is “The Self” In Self-Determination?

Family Directed?

Self Directed?

State Directed?

Provider Directed?

Broker

Directed?

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When We Ask Self-Advocates...When We Ask Self-Advocates...

What or who helps you to be in control What or who helps you to be in control of your life?of your life?

Very quickly someone will say... “My Very quickly someone will say... “My Parents.” And many will agree.Parents.” And many will agree.

What or who keeps you from being in What or who keeps you from being in control of your life?control of your life?

Very quickly someone will say... “My Very quickly someone will say... “My Parents.” And many will agree.Parents.” And many will agree.

(In New Hampshire, Texas, Oregon, Colorado, North Carolina, Arizona, Idaho, Virginia, Missouri, Montana ...)

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... Yet Good Support... Yet Good SupportCan Set You Free!Can Set You Free!

Place the individual in meaningful position of Place the individual in meaningful position of power where his/her opinion is taken seriously power where his/her opinion is taken seriously (assume competency).(assume competency).

Listening well to the individual, including a 3Listening well to the individual, including a 3 rdrd party listener.party listener.

Provide the person good information.Provide the person good information.

Apply useful assistive technology.Apply useful assistive technology.

Plan for meaningful supports to counterbalance Plan for meaningful supports to counterbalance the effects of intellectual disability.the effects of intellectual disability.

And so... What is “Bad” Support?

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AGE of the PersonWith

DisabilitiesFamilies can help -- Strong, positive support -- Self-determined individualsFamilies can help -- Strong, positive support -- Self-determined individuals

Families make most important decisions

Self-advocates make decisions about their

life.

Family-Directed Supports

Self -Directed Supports

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Just OneJust OneThing More…Thing More…

Self Advocacy…. It’s more than individuals Self Advocacy…. It’s more than individuals wanting to command and live life…wanting to command and live life…

It’s grown into a “movement”It’s grown into a “movement”

Standing together… self advocates have Standing together… self advocates have opinions… opinions that matteropinions… opinions that matter

Check out Self Advocates Becoming Empowered at: www.sabeusa.org

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Close institutions. Close institutions.

Get us real jobs. Get us real jobs.

Close sheltered workshops.Close sheltered workshops.

Give US the money to run OUR lives.Give US the money to run OUR lives.

Money follows the person means it is OURS not Money follows the person means it is OURS not the program’s.the program’s.

We have the right to make our own decisions We have the right to make our own decisions with or without the support of others.with or without the support of others.

WE CAN RUN OUR LIVES.WE CAN RUN OUR LIVES.

SABE Tells It Like It Is!SABE Tells It Like It Is!  (September, 2005)(September, 2005)

ListenTo

Us!

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A Word About… A Word About…

YOUTHYOUTHYounger 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

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www.theriotrocks.org

It’s Free… but

contributions are

most welcome

3. Assure that our service 3. Assure that our service system can get us there… system can get us there…

What a relief.You can trust us.We’re professionals!

The System Stinks!

Agosta, ‘96

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Meeting Individual NeedsMeeting Individual Needs

Individuals

Community

Government

A Three Legged Approach!

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11stst leg… Government leg… Government

A need to settle on a A need to settle on a direction…direction…

A need for greater A need for greater efficiency…efficiency…

A need for greater A need for greater collaborationcollaboration

3838

EfficiencyEfficiency

Reform: person-centered system architectureReform: person-centered system architecture

Disinvest from low value/high cost servicesDisinvest from low value/high cost services

Medicaid!Medicaid!

New business models… Open marketsNew business models… Open markets

““Non-traditional” providers/direct purchase such Non-traditional” providers/direct purchase such as “self directed systems, microboards...)as “self directed systems, microboards...)

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CollaborationCollaboration

Across-populationsAcross-populations

Across systems… “systems Across systems… “systems integration” integration” (state developmental (state developmental disabilities services, social security, disabilities services, social security, TANF, Medicaid, schools…)TANF, Medicaid, schools…)

Across provider networksAcross provider networks

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

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22ndnd leg… Community leg… Community

Enlisting community Enlisting community businessesbusinesses

Enlisting faith-based Enlisting faith-based organizations organizations

Enlisting community Enlisting community serving organizationsserving organizations

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How We Think Of Some CommunitiesHow We Think Of Some Communities

GangsGangs

DrugDrugss

ViolenceViolence

Lack of Lack of ServicesServices

PovertyPoverty

UnemploymenUnemploymentt

Language Language BarriersBarriersSchool School

FailureFailure

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Another Way To Think....Another Way To Think....

Local Local InstitutionsInstitutions

Individuals &Individuals &Groups of Groups of People People

Community Community Serving Serving

OrganizationsOrganizations

Community Community AssetsAssets

4343

33rdrd leg… leg… People Helping PeoplePeople Helping People

+

+

Me

=

Me

We

Me

4444

Who Are Who Are We?We?

4545

People Helping PeoplePeople Helping People

Toy Exchanges… Toy Exchanges… Equipment ExchangesEquipment Exchanges

Exchange NetworksExchange Networks

Micro-LoansMicro-Loans

Peer Support NetworksPeer Support Networks

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A Closer Look

Individual and Family Outcomes

Multi-Tiered Approach to Individuals &

Families

Supportive

Learning

Community

Family Input and

Guidance

Guiding Principles

State Agency

Establishing a Sustainable Future for Individual and Family Supports

4747

Establishing a Sustainable Future for Establishing a Sustainable Future for Individual and Family SupportsIndividual and Family Supports

Potential Demand for Services

Includes all individuals with a developmental

disability. Most live home with their family.

Other Service Programs

Individuals and families with still higher needs access more intensive

services.

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.

Individuals withDevelopmental Disabilities

and Their Families

Entry

Family Support Funds

Case mangers develop Support Plans for individuals n and families

Family-to-Family Peer Assistance and Exchange

Networks

Assistance from Businesses and

Organizations, and other Public

AgenciesFamilies & Staff

Entry

HCBS Waivers Other Programs

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What Are You Going What Are You Going To Do About It?To Do About It?

What traditions, What traditions, commitments and vision commitments and vision define us?define us?

What assets can weWhat assets can wecount on and leverage?count on and leverage?

What alliances canWhat alliances canwe forge?we forge?

What opportunities will we What opportunities will we create?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 sustainablePathway to sustainablefutures will be differentfutures will be different

Each community, locality andEach community, locality andstate is in a different spotstate is in a different spot

Opportunities differOpportunities differ

But it’s the same critical question: But it’s the same critical question: What What changes do we need to make to achieve changes do we need to make to achieve the best possible outcomes for people the best possible outcomes for people and families going forward?and families going forward?

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The Challenge Is To The Challenge Is To Find Ways To ...Find Ways To ...

Encourage, model and Encourage, model and support an support an “action bias”“action bias”consistent with consistent with retooling... retooling...

Encourage, nurture andEncourage, nurture andsupport alliances thatsupport alliances thatwork to work to mobilize energymobilize energyto act... to act...

Anyone who has never made a mistake has never tried anything new.

AlbertEinstein 

The Fundamental Issues The Fundamental Issues to Overcome Are:to Overcome Are:

TechnicalCan we figure out ways to make Can we figure out ways to make the structure work in a technical sense? the structure work in a technical sense?

PoliticalDo we have the will to make changes to the flow of money? Do we have the will to make changes to the flow of money?

Can we abandon program (slot) driven approaches?Can we abandon program (slot) driven approaches?

Can we move from supply centered to demand centered Can we move from supply centered to demand centered systems? systems?

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So Let’s Get Started!! So Let’s Get Started!! Talk… Discuss… Talk… Discuss…

Deliberate…. Change!Deliberate…. Change!Change imposes choice.Change imposes choice.

Choice imposes ambiguity.Choice imposes ambiguity.

Ambiguity promotes discussion.Ambiguity promotes discussion.

Discussion promotes Discussion promotes deliberation.deliberation.

Deliberation forms opinion.Deliberation forms opinion.

Opinion leads to action.Opinion leads to action.

Concluding ThoughtsConcluding Thoughts

Change imposes choice.Change imposes choice.

Choice imposes ambiguity.Choice imposes ambiguity.

Ambiguity promotes discussion.Ambiguity promotes discussion.

Discussion promotes Discussion promotes deliberation.deliberation.

Deliberation forms opinion.Deliberation forms opinion.

Opinion leads to action.Opinion leads to action.

Let’s Agree to Change.

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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

Need and Opportunity

5555

If not YOU, then who?If not YOU, then who?