150 Years of Movement Toward Community in the United States

1. 150 Years of Movement Toward Community in the United States James W. Conroy, Ph.D. The Center for Outcome Analysis www.eoutcome.org

2. What is the Purpose of Human Services? “Are people better off?” Is this measurable? Yes, No, and partly …. Today: the case of segregated models for citizens with disabilities How do we know there’s a better way than institutional segregation? 40 years of studies and learning about what’s really important….. One message: The evidence is very strong about DI

3. Outline • 1. History & Trends • 2. Personal Journey • 3. The Science: • How do we know people are better off? • 4. Economy of Scale Concepts • The overall message: Overwhelming data, the evidence is VERY STRONG for small, family-like, community living

4. Very Big – Versus Small“Institution versus Community” • This is a settled issue • Media exposure, scandals, court decisions, and a large body of research • Institutions have declined • Community options are preferred in every way

5. Source of The Institutional Model • Brought to the U.S. in 1848 • By Samuel Gridley Howe • From a “model program” in Germany • The vision was a self-sufficient agrarian community • Free from pressures of normal life • Protected, safe, healthy • Massachusetts School for Idiotic Children (Fernald)

6. Regimentation 1915

7. Howe Changed by 1866: • “… all such institutions are unnatural, undesirable, and very liable to abuse. • We should have as few of them as is possible, and those few should be kept as small as possible.” • Such persons [with disabilities] ... should be kept diffused among sound and normal persons.

8. 150 Years of Institutionalization

9. Institutional Decline, Community Rise

10. From large, segregated, historically state of the art settings To small, integrated, more recent models of what a “home” means Movement from Institution to Community

11. For 100+ Years, What Did America Do With People Like Mike? • Diagnose him • Exclude him from school • Tell his parents that he needed medical care • That he could never learn and would bring no joy to the family • That he needed to live in a large facility

12. Change Began in 1970 • A personal note • 1970, just out of University • No idea what to do with a degree in Physiological Psychology • Got a strange job by pure chance • Working on a national survey of people with “developmental disabilities” • Right at the national peak of institutions

13. Went to Collect Scientific Data • At an institution named “Pennhurst State School and Hospital” • Located near Valley Forge, the cradle of American liberty • I was surprised… • And sickened

15. Pennhurst: Poor Conditions • 2800 people lived there • It was designed for 700 • People were left in cribs all day and night • Broken bones went untreated • “Problem” people had all teeth pulled • “Bathing” was often a hose sprayed at a group in a room with a floor drain • Why treat human beings this way?

16. Skewed Values in America • 1968: The average cost per person at Pennhurst was $5.90 per day • The average cost of keeping a leopard at the Philadelphia zoo was $7.15 per day • In the richest nation on Earth…..

17. I Believed Then That We Should Improve the Institutions • Spent 12 years working on this • We worked in a model institution, built in 1972, not overcrowded, and with access to huge resources in money and University faculty and students • I was able to show scientifically that tremendous resources did result in minor skill development and small improvements in qualities of life

18. But We Got A Big Surprise • In the midst of America’s efforts to create “good” institutions • A U.S. Federal Court declared Pennhurst to be “Unconstitutional by its very nature” • Because it was specifically and consciously designed to segregate • And because the people • had lost skills (they • had been harmed)

19. Judge Ordered All People Should Have a Chance to Live in Society • I was a skeptic • Deinstitutionalization in the mental illness field had been a disaster and a disgrace • I thought this would be, too • So I wanted to do research on this

20. The Pennhurst Longitudinal Study • Began in 1979 • Largest such study ever done • Tracked 1,154 people • Visited every person every year • Surveyed every family every year • Measured qualities of life, satisfaction, costs • (This process still continues in 2013)

21. Purposes of Pennhurst Longitudinal Study • Track 1,154 people • Are these people better off? • In what way(s)? • How much? • At what cost?

22. Adaptive behavior Challenging behavior Health Health care Medications Services Productive activity Employment Physical quality Self-determination Individualization Integration Third party opinion Personal interviews (satisfaction) Family surveys (satisfaction) The Outcomes

23. Average age 39 years at the beginning of the study Had lived at Pennhurst an average of 24 years 64% male 33% had seizures 13% blind 4% deaf 18% unable to walk 50% nonverbal 47% less than fully toilet trained 40% reported to be violent at times 86% “severe or profound” What Kind of People?

24. What Kind of Community Homes? • “Community Living Arrangements • 3 people • Very different policy from Finland • Live-in or shift staff • 24 hour staffing • With licensing, monitoring, and case management oversight

25. Pennhurst Class Members:Adaptive Behavior Development

26. Pennhurst Class Members: Improved Self-Control of Challenging Behavior

27. Pennhurst: Strong Initial Family Resistance to Community Idea

28. Pennhurst: 1991 Community Family Satisfaction

29. Different Question:Has Your Relative’s General Happiness Changed Since Moving?”

30. What Kind of People Made the Largest Proportional Gains?

31. Pennhurst Mortality

32. Pennhurst Costs Study, 1982

33. More Recent: CaliformiaSix Research Designs • Family Survey (memory and satisfaction) • Nonequivalent comparison groups • Mathematical controls • Matched comparison • Pre-post • External comparisons

34. Adaptive Behavior Development • Adaptive behavior development means growth toward more independent functioning • Average score increased from 44.7 to 46.7 (statistically significant at p<.05) • People have become slightly less dependent

35. Adaptive Behavior Gains in Deinstitutionalization Studies

36. Challenging Behavior Control • Challenging behavior control means control by the individual, not by others • Average score increased from 68.1 to 76.4 (highly statistically significant, p<.001) • People have become sharply more able to control their behavior

37. Challenging Behavior Changes in Deinstitutionalization Studies

38. Medications and Health Care

39. Services and Employment

40. Self-Determination, Integration

41. The Quality of Life Changes Scale: Then=DC, Now=Comm.

43. The Voices of the Class Members • We attempted to interview the person • On every visit • Regardless of level of disability • Using any alternative means of communication available • Language board, computer, signing, non-English, gestures • Over 4,000 attempts, about 25% answered.

44. Personal Interviews: How do you feel about living here?

46. Would you want to go back? Why? LIKED IT AT SONOMA LIKED LIVING AT AGNEWS LIKED IT AT STOCKTON HAD OWN SPC AT DC THEY TOOK CARE OF ME MISS FRIENDS AT CAMARILLO MISS FRIENDS CAMARILLO GIRLFRIEND LIVES THERE SOC INTERACTION W/STAFF & PEERS MORE FREEDOM AT CAMARILLO A LOT OF RULES [here] SEE GRANDMA DON'T KNOW WHY NOT SURE

47. If you had one wish ... First: wishes about family Move closer to Mom, move back to Phillipines with family Second: wishes about other relationships: Romance, marriage, visitors, going to visit friends Third: wishes about move Get an apartment, move to Washington, get out of this dump Favorite: “I wish you’d leave”

48. FAMILY SURVEYS:We asked the families • What has changed? • Is it better or worse? • How happy is your relative? • Would you want him/her to go back? • What is most important to you? (40 to 50 percent response, one mailing)

49. What do the Coffelt Movers’ Families Think?Answer: Improvements in Every Quality Area.

50. Family Survey: Happiness