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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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
"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
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
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, of course…..
“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
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
Adapted with permission from Val Bradley (1999), President, Human Services Research Institute, Boston USA
Large institutions are exposed as places that strip individuals of their humanity and connection with society; community system is the vision
“Home-like” and “job-like” programs are criticized because they enforce segregation and do not lead to community membership
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.
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.
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.
service models ……..
Unicorns, Active Treatment, The need for institutionalization, QMRP’s and other mythical creatures and concepts.
Helping people leave institutions
Building Community Capacity for All
Preventing Institutionalization and Closing Admissions
Tasks relative to institutions:
Build community capacity for all
Increase provider and governmental capacity through training and technical assistance
School leading to productive adulthood for all children
Education of policymakers
Moving out of large non-governmental residential and day programs
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)
“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
glass and carpet do not make a meaningful life
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 tile of this meeting: The Future Is Now: Supporting Real Lives, Real People
Real people are dependent on other real people.
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
* Facility Acquisition Syndrome
Walt Kelly, Pogo, Earth Day, 1970
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.
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
Weighty Legacy Services & Structures
There is no better time to be clear about values and driving forces…
It’s A Living Museum ...
IEP, ISP, IHP, IWRP, IFSP, IPP
1956... 1962... 1972 …1976...1983... 1987.. .1992... 1997.. 2000…2005...2012
We cannot afford this!
Change is about people
not about bylaws, structure, regulations or policies.
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
David Pitonyak, The Importance of Belonging
and are we listening?
do not necessarily equal
a quality life.
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
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
-- Michael Smull
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
Movement is growing
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
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…
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
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
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.
3. Stop building, repairing or improving institutions, “community” ICFMR’s, sheltered workshops and segregated schools.
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 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.
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 [email protected]