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Where Have We Been? Where Are We Going? How Will We Know When We Are There? Life in the Community: It ’ s Not Just About A Change in Housing Prepared for: “ The Future Is Now: Supporting Real Lives, Real People. ” Steven M. Eidelman Columbia, Missouri March 15, 2012.

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The first duty of a revolutionary is to get away with it. Jerry Rubin

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Where Have We Been? Where Are We Going? How Will We Know When We Are There? Life in the Community: It’s Not Just About A Change in HousingPrepared for: “The Future Is Now: Supporting Real Lives, Real People.”Steven M. EidelmanColumbia, MissouriMarch 15, 2012

Subtitles:→The revolution, or is it an evolution, in the rights, services and supports for people with disabilities. →What has happened and what is left to be done. →People with disabilities taking their rightful place in society.

Thoughts on Revolution

The first duty of a revolutionary is to get away with it. Jerry Rubin

To be a revolutionary you have to be a human being. You have to care about people who have no power.Jane Fonda

Every revolution evaporates and leaves behind only the slime of a new bureaucracyFranz Kafka

Loneliness is a killer for people with Intellectual Disabilities

  • “We need others. We need others to love and we need to be loved by them. There is not doubt that without it, we, like the infant left alone, would cease to grow, cease to develop, choose madness and even death.”

    • Leo F. Buscaglia, Ph.D.

"Where, after all, do universal human rights begin? In small places, close to home - so close and so small that they cannot be seen on any maps of the world. Yet they are the world of the individual person; the neighborhood he lives in; the school or college he attends; the factory, farm, or office where he works. Such are the places where every man, woman, and child seeks equal justice, equal opportunity, equal dignity without discrimination. Unless these rights have meaning there, they have little meaning anywhere. Without concerted citizen action to uphold them close to home, we shall look in vain for progress in the larger world."

Eleanor Roosevelt March 27, 1958

“IN YOUR HANDS: A Guide for Community Action for the Tenth Anniversary of the Universal Declaration of Human Rights”

Things are not as they were, at least in the U.S.

Things are not as they were….From Christmas in Purgatory Published in 1966

Things are not as they were…

Or are they?

“Killing a disabled infant is not morally equivalent to killing a person. Very often it is not wrong at all.”

Professor Peter Albert David Singer, 2003

The Ira W. DeCamp Professor of Bioethics

Center for Human Values, Princeton University

And then there is….

Eight states are sending autistic, mentally retarded, and emotionally troubled kids to a facility that punishes them with painful electric shocks. How many times do you have to zap a child before it's torture?

— By Jennifer Gonnermanhttp://motherjones.com/politics/2007/08/school-shock

After a decade of trying, disability advocates in, led by Nancy Weiss, have finally gotten the U.S. Department

of Justice to investigate. 31 national disability organizations signed onto a letter in September, 2009 to the Department of Justice about practices at the Judge Rotenberg Center and DOJ has agreed to investigate and the investigation is underway.

Despite repeated requests, Human Rights Watch and Amnesty International express no interest in ending this practice.

And also….

And, of course…..


What People with Intellectual and Developmental Disabilities, and Their Families Expect and Demand has Changed

Available from….http://www.teddysts.com/

“In the 1960s you treated us like plants. You fed us, clothed us, kept us warm,and wheeled us out to feel the sun.

In the ‘70s & ‘80s you discovered 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 your plants. We are not your pets. We are people like you and we want to be treated as people. We want the same opportunities as anybody.”

Dirk Wasano -- Hawaii Planning Council on Developmental Disabilities, from John Agosta

The ID/DD System - Where Civil Rights and Science Intersect

  • Changes in the field in the past 50 years have been driven first by rights:

    • Programmatic

      • Early Intervention

      • Special Education

      • Deinstitutionalization and Community Living

      • Employment and drive towards economic self sufficiency

    • Law

      • Section 504 of the Rehabilitation Act

      • P.L. 88-164 created the predecessors to the UCEDDS/LEND

      • The Developmental Disabilities Act

      • The Americans with Disabilities Act

      • The Olmstead Supreme Court ruling

  • In many cases the science has not caught up

  • Nor have the environmental and attitudinal barriers

It began with a rejection of the Medical Model of Care in the 1970’s

It expressed itself in the rejection of institutional care.

Some things that were thrown out, especially the thoughtful participation of physicians, dentists and nurses must be brought back, albeit differently, into our thinking and practice

The Tale of Four Ideals





Self-Deter- mination





Adapted with permission from Val Bradley (1999), President, Human Services Research Institute, Boston USA

Ideal 1 -- Illuminates Institutions

Large institutions are exposed as places that strip individuals of their humanity and connection with society; community system is the vision


Ideal 1 + 2 -- Attack Segregation

“Home-like” and “job-like” programs are criticized because they enforce segregation and do not lead to community membership




Ideals 1 + 2 + 3 -- Shift in Power

For people to have lives that they choose and to be supported in ways that facilitate their preferences, people must have control over the distribution of resources.






Ideals 1 + 2 + 3 + 4– The Supports Paradigm

For people to have lives that they choose and to be supported in ways that facilitate their preferences, we need to understand the what and how of supports.

The Supports Intensity Scale (SIS) was developed. SIS measures support requirements in 57 life activities and 28 behavioral and medical areas. The assessment is done through an interview with the consumer, and those who know the person well.

SIS measures support needs in the areas of home living, community living, lifelong learning, employment, health and safety, social activities, and protection and advocacy.








Ideals 1 + 2 + 3 + 4+?

Someday in the future there will be another powerful idea (s) that will help to enhance and sharpen our vision -- Our job is to make sure that we are ready to receive and act on it.








Creeping Normalcy

  • Def.- the way a major negative change, which happens slowly in many unnoticed increments, is not perceived as objectionable.

  • The intention was community inclusion, participation, self-determination

    • The goal was for people to have valued roles

      • That they themselves choose and that others also perceive as valued

  • The reality is, all too often, segregation, isolation and days filled with meaningless activity

    • Not what we had in mind

Why is it?

  • We live in the age of

  • But some still promote congregate care settings and even institutions as

    service models ……..

Unicorns, Active Treatment, The need for institutionalization, QMRP’s and other mythical creatures and concepts.

Medicaid Institutional Context

  • Because of Medicaid, people need to demonstrate the need for Institutionalization and Active Treatment to live in the community.

    • There is no such thing as the need for institutionalization.

    • No one has ever actually seen active treatment.

      • Apparently, it occurs on three days each year in select locations

Community Based Supports is Not A Place

  • Deinstitutionalization has mostly been about real estate.

  • Level of Care (how much support people need) has been mostly tied to real estate also, not how people want to live or what they need.

  • Intensity of supports* allows one to plan, regardless of need or the place where supports are delivered.


Deinstitutionalization is a Rectangle

Helping people leave institutions

Building Community Capacity for All



Preventing Institutionalization and Closing Admissions

You cannot be part of the community while institutionalized

Tasks relative to institutions:


Build community capacity for all

Increase provider and governmental capacity through training and technical assistance

Support Families

Enhance Communities

Prevent Institutionalization

School leading to productive adulthood for all children

Education of policymakers

“Second Order”Deinstitutionalization

Moving out of large non-governmental residential and day programs

Despite Progress in the US…

  • 35,000 people remain in large state institutions

    • They are trapped there due to the political clout of employee unions, rural legislators and families who have guardianship over them

    • 90,000 people are still in ICF/MR’s though the number continues to decline

    • 20,000 of the 90,000 in large private ICF/MR’s

    • ICF/MR = institutional care

  • 50,000 people in large private non-ICF/MR facilities = institutional care

  • 25,000 people are in nursing homes = institutional care

  • It is up to all of us to change these numbers.

What is an institution?

Institutions, by definition, deny access to the larger society to people with disabilities.

“An institution is any place in which people who have been labeled as having a disability are isolated, segregated and/or compelled to live together. An institution is also any place in which people do not have, or are not allowed to exercise control over their lives and their day-to-day decisions. An institution is not defined merely by its size."

(ECCL http://www.community-living.info/?page=280 Accessed 27/08/10)

People are institutionalized due to lack of resources and alternatives

  • The “need” for institutionalization:

    • is an artificial construct.

    • no research basis.

    • no research basis supporting institutions over well executed community inclusion.

Heard from the fashion students enthusiastically talking in the corridors in Allison Hall West …

“Brownis the new black.”

In our world…..

Sheltered workshops, Adult day programs, big group homes and segregated schools are the new institutions.

Sheltered workshops and segregated schools are the new institutions.

The Riot, Issue 14, October, 2007

There is nothing “Magic” about institutions, day programs or segregated schools

  • Magic is best left to magicians

  • Bricks and mortar, wood and tile,

    glass and carpet do not make a meaningful life

  • Meaningful lives are based on relationships, the ability to experience life and non-structured human interaction

    • You do not have a meaningful life in a large congregate facility surrounded only by paid caretakers

People need experience with choices to make them

  • Those who have been institutionalized should experience options and possibilities

    • Families, when involved, may choose the known over the unknown

    • The leadership task, for professionals, is to be aware of this tension

  • Effective strategies exist, especially for those with significant cognitive and psychiatric disabilities, to help people make informed choices

How do we deliver on the promise of genuine community inclusion, participation and acceptance for all, without qualifiers as to the nature of a person’s disability?

The Ideal Planning Tool for Community Inclusion

  • A rheostat (dimmer switch) allows for infinite variation in the intensity of light, accommodating to the current needs of the user.

  • Supports can similarly be varied to accommodate individual needs, independent of the location of those needs.

  • Some call this person centered planning.

Saying to families that people are going to live independently

The tile of this meeting: The Future Is Now: Supporting Real Lives, Real People

Real people are dependent on other real people.

No one in this room lives independently

  • We are all interdependent

  • Interdependence builds social capital

  • Social capital strengthens communities

  • Talking about independent living scares families

    • It scares me

Steve’s Golden Rules of Working with Families

  • Start where the family is

  • Tell the truth

  • Demonstrate integrity

  • Provide information

  • Answer questions

  • Give families some time

  • Project confidence and competence

  • But be firm – People with disabilities are the ones whose human rights are at issue

Many of the programs developed in the past are now the very programs which must now change.

Physical presence in the community ≠ integration and inclusion.

Community supports are not a place.

Insufficient resources to maintain three levels of programs

Large Public/Private Institutions

Medium size facilities/older community programs

Community supports and services

We Also Must Prepare for Second Order Deinstitutionalization: The Transformation of Existing Community Services

Governments and funding organizations have both an edifice complex and FAS*.

  • When we see people who are different, we think “program”.

  • When we think “program” our default position is building.

    • In part, an artifact of our roots in education.

      * Facility Acquisition Syndrome

Community and Freedom Cannot Be Located on a GPS

  • The movement to deinstitutionalization people has mostly been about real estate.

  • Level of Care is mostly about real estate, not how people live or what they need.

  • Intensity of supports* allows one to plan, regardless of need or the place where supports are delivered.


Formidable FactorsLimiting Change

  • The very practices and systems that need to change are the ones developed, as innovative, by the current generation of leaders.

Walt Kelly, Pogo, Earth Day, 1970

Providers are doing what they were asked to do.

They are now being told they must change!

Debate and discussion are valuable, but not changing is not acceptable.

It is about the rights of people with disabilities, not the rights of organizations.


  • States need a plan to develop comprehensive community supports for those currently in institutions

    • Community support development takes place within the context of local culture, history and traditions

    • Culture is hard to change but changes with exposure and education

What To Do???

We can’t stay on this spot

We need to rethink what we do – affirm our values but resolutely search for “value”

This slide part of a series of slides- Sustainable Futures -A Joint Project of The Arc of the United States and HSRI

Heading for a crash!

Weighty Legacy Services & Structures

Budget Shortfalls

Rising Demand

Workforce Shortages


Quality Problems

Antiquated Technologies

There is no better time to be clear about values and driving forces…

It’s A Living Museum ...

Customized Employment

Day Habilitation


Group Homes

Family Support

Token Economies


Public Institutions

Supported Living






Sheltered Work

Supported Work

1956... 1962... 1972 …1976...1983... 1987.. .1992... 1997.. 2000…2005...2012

We cannot afford this!

Programs we need to change….they were what we knew how to do at the time. We have learned how to do better.

  • Sheltered workshops

  • Group homes where people are placed

  • Segregated education

  • Re-named institutions

  • Programs that separate people from the communities in which they live

  • Rejection of medical professionals

  • Others?

Why is changing how we support people so hard?

Change is about people

and behavior...

not about bylaws, structure, regulations or policies.

Fear Of Losing















Disability is both a fundamental cause and a consequence of poverty (Shawn Fremstad, Bridging the Gaps, Center for Economic and Policy Research, Washington, DC.)

The Confluence of Poverty and Disability

Dan Atkins & Christie Guisti, Disabilities Law Program at Community Legal Aid Society, Inc., Delaware

What we ask …

  • What’s wrong with him?

  • How can we fix him?

  • Why isn’t she more like us?

  • What are we supposed to do with her if we can’t fix her??

    David Pitonyak, The Importance of Belonging

What we should be asking:

  • What is he good at;

  • What does she like?

  • What is frustrating this person?

  • What would he change about his life?

  • Does she have a life that is meaningful to her?

  • What are his dreams?

  • Who cares about her…who does she care about?

  • Does he (and do others) believe in a better future?

  • Can she tell us what she wants or needs …

    and are we listening?

Quality services

do not necessarily equal

a quality life.

An Emerging Paradigm: More Adults are Living with their Families

Over half (57%) of all individuals with MR/DD

receiving publicly financed supports live in the home of a family member.

Five states reported that 70% or more of all persons receiving support resided with their families.

Lakin Residential Services Patterns and Trends 2007

Slide: Nancy Thaler, NASDDDS

Support Models are Changing:

The day is rapidly approaching when people won’t accept congregate services and funding models will encourage individualized supports.

A recent survey of progressive service providers found that almost without exception, when offered options, no one chose to live in a group home or work in day programs/sheltered environments

What? He wants a night job? Can’t you see I’m a day program provider!?

We have built a system on low wage workers

The average starting wage for Direct Support community service staff in 2003 was $7.33

The same year, the average wage of Wal-Mart Grocery workers (a company not known for valuing employees) was $8.50

Wages of Direct Support Professionals Serving Persons with Intellectual and Developmental Disabilities: A Survey of State Agencies and Private Residential Provider Trade Associations; Research and Training Center on Community Living, University of Minnesota, Volume 14 • Number 2 • March 2003

Wal-Mart, Driving Workers and Supermarkets Crazy, New York Times, Steve Greenhouse, October 19, 2003

“The goal is to have a

beautiful life, not a

beautiful plan.”

-- Michael Smull

  • The significant problems we face can not be solved at the same level of thinking we were at when we created them….

  • Insanity: doing the same thing over and over again and expecting different results….

  • Albert Einstein

Policy Challenges and Major Issues

  • Autism –Reports of increasing numbers of children and adults with Autism demanding services

    • Not looking for the same things as previous generation of parents of people with id/dd

    • Whether this is an “epidemic” or diagnostic issue(s) remains unclear and highly disputed on multiple sides of the issue

    • Infighting among groups fragments message

    • Science on efficacy lagging behind how people are spending $

Policy Challenges and Major Issues

  • Aging – of people with id/dd

    • And of their parents

    • Over 800,000 people with id/dd in US living with parent over 65 years of age

    • First generation of elderly people with significant disabilities in the history of the world

      • Unclear as to what/how to support them

      • Unclear as to health/medical conditions

      • No meaningful training for clinicians

Policy Challenges and Major Issues

  • Family Poverty

    • Increasing

    • Income Disparities and wealth concentration

      • Middle class incomes not keeping pace

    • Costs of care giving

      • Out of pocket costs

      • Opportunity costs

        • Work less, turn down promotions, turn down overtime

        • Women working part time instead of full time

          • Impact on their retirement, SS earnings, Pensions

Policy Challenges and Major Issues

  • Deficits

  • SSI

  • Working/retirement age-of parents caring for people with intellectual/developmental disabilities

  • Medicaid growth rate

Policy Challenges and Major Issues

  • Waiting lists for services

    • Special Education an entitlement

    • Adult services – community supports, are not except in California and Michigan

    • Appropriateness of what is provided

    • Waiting lists will grow

    • Family stress will increase

    • No policy/conceptual models for serving adults living with families

      • Prior models assumed people would move out of family home

Policy Challenges and Major Issues

  • Divorce-Single Parenting

    • No evidence of higher divorce rate in families of PWD

    • But, lots of people are divorced

    • Family support programs not keeping up with demand

  • Siblings assuming major roles

    • Needs and expectations different than their parents’

Policy Challenges and Major Issues

  • Direct Support workforce inadequate

  • System was build on presumption of “cheaper” than institutions

    • “Cheaper” due to lower staff salaries

    • Cost of living increases below actual cost for decades

  • Quality of staff and need for training

  • Turnover rates

  • Recruitment

    • Immigration policy

Supporting Families

The movement was begun primarily by families after WWII

That generation is fading away

Families of younger children: different priorities and perspectives

When the family voice in strong in all people with intellectual and developmental disabilities are better off

Self Advocacy

Movement is growing

Lacks infrastructure

Different than the parents movement

Self-advocates need to be incorporated into leadership, governance and planning

A rights approach-people demanding respect and a voice

Policy Challenges and Major Issues

  • Health Disparities

    • When we threw out the “medical model” we forgot that good health takes work.

    • No focused federal responsibility for or financial support of training of medical personnel to work with adults

      • most people with intellectual disability are adults

    • Reimbursement models frequently do not account for intensity of time

    • Many paid caregivers lack knowledge of health care and health system

    • Significant gaps in care & health disparities for people living in communities in the US

Policy Challenges and Major Issues

  • The Roberts Court

    • Negative Right Theories (right not to be segregated) not in favor

      • Roberts, Thomas, Scalia, Alito, Kennedy(?)

    • Increasing rights of states and organizations as opposed to individuals

    • Family rights are products of individual rights (Turnbull et. al.)

    • Many landmark decisions impacting people with disabilities when could not get action through Congress or state legislatures

Population with Disabilities Will Grow at an Increasing Rate

American Community Survey, 2006,

*Assume rates of disability and institutionalization remain the same as 2006

So given all of that…..

We, as a field, beginning with those with intellectual disabilities and their families, and including professionals, advocates and policymakers need to have some serious and difficult conversations and develop solutions to many of the challenges facing us.

We Need to Begin Some Very Difficult Conversations To Be Certain of Where and How We Want to Go Before People Who Do Not Care Much Make the Decisions for Us.

And I need to find more diverse clip art…

Conversation #1What are families responsible for when their family member with a disability is an adult?

  • The old assumption of people moving out of their parent’s home in their twenties, with public support, may no longer be operable

Conversation #2Inside baseball

  • Are we willing to tolerate those who continue to advocate for (and are frequently successful) segregated, isolating and expensive services?

Conversation #3How much is enough?

  • Some of the early designs of self-determination, person centered, individually controlled supports went to people with well informed families.

  • Can we afford it? What about those who have nothing?

  • Are we willing to review what is now paid for and change the nature of supports for some people so that those with little or nothing can have something?

Conversation #4There is no excuse not to know.

  • Information dissemination and knowledge management crucial to future success

  • Research dissemination in useable formats a shambles

  • Much research is the CAT scan framework

  • Can we have conversations about reallocation of research dollars?

Conversation #5Can we get serious about technology?

  • We have barely scratched the surface.

  • The issues about “big brother,” privacy and control must be addressed

  • Given labor force demographics and systems model challenges, the upside of technology is significant.

Conversation #6How to take leading edge practices to scale?

  • Many organizations doing innovative things

  • Most are small by design

    • Most people who get supports get them from larger organizations

Conversation 7Why Do We Tolerate Lousy Quality?

  • It is everywhere.

  • It hurts everyone.

  • It wastes precious resources.

    • It is rarely because there is not enough $

Quality of Community Supports is SpottyIf All Supports and Services Available Today Were As Good As the Best That Are Available with Current Technology and Resources...

The quality of life for people with intellectual and developmental disabilities would improve more than all the progress in the past 50 years.

Everyone here is part of the solution to this issue.

This is a Human Rights Issue

Conversation #8How do we fully integrate the medical community into our agencies, programs and practices?

  • Serious health disparities for people with intellectual and developmental disabilities.

  • Some islands of excellence.

  • Blaming “the medical model” was an easy out, but enough already.

Conversation #9We must learn to make use of all resources available

  • It is easy to rely on Medicaid Waivers

  • Funds in health, housing income support, job training, education, higher education, rehabilitation, community development, etc. must be come part of our programmatic armamentarium.

Conversation #10No Excuses-invest in staff

  • We are a service field with weak investment in ongoing development of people who work in the field

  • Make it a priority

  • Leadership development a must

If I had an hour to save the world, I’d spend 55 minutes defining the problem.- Albert Einstein

Some solutions.

1. Everyone must work with elected officials to solve whatever problems we all face. “Get involved in politics as if your life depends on it…because it does.”Justin Dart

Some solutions.

2. A five (or three or ten) year plan to get rid of the old, segregated ideas and programs…the ones that separate people from their communities.

Some Solutions

3. Stop building, repairing or improving institutions, “community” ICFMR’s, sheltered workshops and segregated schools.

Some Solutions

4) Ramp up training of clinicians and other support models to improve both primary and specialty care for people with intellectual and developmental disabilities

We could take a tip from Copernicus

  • Copernicus asserted that it was the sun, not the earth that is at the center of the universe

  • We will realize that we are not at the center of the “human service universe” but rather the people we support are

  • Our job is to help people assume their rightful place at the hub of their own universe and support their discovery of their own power that awaits them there.

Community Inclusion, and Inclusive Education for All are Both Possible

We know how to do it

Some are doing it well

It will be hard work

Most important work is hard

It is better for people with disabilities

It is better for families

It is better for our communities and our country.

So given all our constraints, what now?

The future ain't what it used to be.

Yogi Berra

The trouble with our times is that the future is not what it used to be.

Ambroise Paul Toussaint Jules Valery 1871-1945

Steven M. Eidelman H. Rodney Sharp Professor of Human Services Policy and Leadership

The National Leadership Consortium on Developmental Disabilities

Department of Human Development and Family Studies

University of Delaware312 Alison Hall West Newark, DE USA 19716

Phone 302-831-8536sme@udel.edu

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