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

1. 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

2. 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.

3. 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 bureaucracy Franz Kafka

4. 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.

5. "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”

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

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

8. Things are not as they were…

9. 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

10. 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.

11. And also….

13. And, of course….. http://www.texastribune.org/stories/2010/jan/20/abuse-power/

14. What People with Intellectual and Developmental Disabilities, and Their Families Expect and Demand has Changed Available from….http://www.teddysts.com/

18. “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

19. 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

20. 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

21. The Tale of Four Ideals Normalization Supports Paradigm Inclusion Self-Deter- mination 1970’s 1980s 2000s 1990s Adapted with permission from Val Bradley (1999), President, Human Services Research Institute, Boston USA

22. 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 Normalization

23. Ideal 1 + 2 -- Attack Segregation “Home-like” and “job-like” programs are criticized because they enforce segregation and do not lead to community membership Normalization + Inclusion

24. 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. Normalization + Inclusion + Self-Determination

25. 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. Normalization + Inclusion + Self-Determination + Supports

26. 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. Normalization + Inclusion + Self-Determination + Supports

27. 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

28. Why is it? • We live in the age of • But some still promote congregate care settings and even institutions as service models ……..

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

30. 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

31. 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. *http://www.siswebsite.org/

32. Deinstitutionalization is a Rectangle Helping people leave institutions Building Community Capacity for All Supporting Families Preventing Institutionalization and Closing Admissions

33. You cannot be part of the community while institutionalized Tasks relative to institutions: Closure 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

34. 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.

35. 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)

36. 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.

37. Heard from the fashion students enthusiastically talking in the corridors in Allison Hall West … “Brownis the new black.”

38. In our world….. Sheltered workshops, Adult day programs, big group homes and segregated schools are the new institutions.

39. Sheltered workshops and segregated schools are the new institutions. The Riot, Issue 14, October, 2007

40. 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

41. 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

42. 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?

43. 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.

44. 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.

45. 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

46. 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

47. 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

48. 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

49. 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. *http://www.siswebsite.org/

50. 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