Disability Policy Issues in the 21 st Century

1. Disability Policy Issues in the 21st Century James W. Conroy, Ph.D. President, The Center for Outcome Analysis www.eoutcome.org Volunteer, Disability Rights International Ukraine

2. This project was supported by the Democracy Grants Program of the U.S. Embassy in Ukraine. The views of the authors do not necessarily reflect the official position of the U.S. Government

3. In other countries…. Especially in the U.S. We already made most of the dumb mistakes I hope …. Our mistakes can help Ukraine …. Avoid some of the worst Avoiding Mistakes

4. Congregate Care – Designed with Good Intentions • And a belief in “economy of scale” • Has turned out to be a poor model • For children and for adults • With and without disabilities • The high points of 70 years of studies • Spitz, Harlow, Nelson et al., Tottenham et al.

5. 1945 – Spitz – “Hospitalism’ Spitz, R.A. (1945). Hospitalism – An Inquiry Into the Genesis of Psychiatric Conditions in Early Childhood. Psychoanalytic Study of the Child, 1, 53-74. Studied children in orphanages, found permanent damage Number of months – critical periods Films online 70 Years of Evidence: 1940s

6. 70 Years of Evidence: 1960s • 1965 – Harlow’s Monkeys • Total Social Isolation • Harlow HF, Dodsworth RO, Harlow MK. (1965). Total social isolation in monkeys. Proceedings of the National Academy of Sciences of the U S A. 1965. • Permanent damage • Biological basis

7. 70 Years of Evidence: 2007 • 2007 – Nelson et al. – Bucharest Early Intervention Project • Nelson CA, Zeanah CH, Fox NA, Marshall PJ, Smyke AT, Guthrie D. (2007). Cognitive recovery in socially deprived young children: the Bucharest Early Intervention Project. Science. 2007 Dec 21;318(5858):1937-40. • Controlled experiments (controversial) • Conclusive science • 2010 – Tottenham et al – Brain damage  emotional problems in orphanage children • Tottenham, et al. (2010). Prolonged institutional rearing is associated with amygdala volume and difficulties in emotion regulation. Developmental Science 13:1 (2010), pp 46–61.

8. One Example: Deinstitutionalization of People with Developmental Disabilitiies • One of the forms of congregate care • Internats, institutions, for people with intellectual / developmental disabilities • We have studied whether people are “better off” when they leave • And whether it costs more

9. Europe and America’s Greatest Expert - In 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.” • Samuel Gridley Howe

11. I 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

12. I Believed Then That We Should Improve the Institution • Spent 12 years working on this • Model institution, built in 1972 • Most expensive in the U.S. • Plenty of staff, students, faculty • Very little improvement in quality of life • Triple the cost • This “improved institution” path was tried and failed.

13. 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 and satisfaction and costs (Still continues as quality assurance)

14. Next: Closing An InstitutionFamilies Were Against It

15. Later, the Families Were Strongly in Favor

16. People Lived Much Longer

17. Costs – Lower in Community

18. Costs – Not a Simple Issue • Pouring money into institutions • Seems to be a terrible idea • Our average cost of institutional care is now $220,000 per person per year • Community $105,000 • Countries will differ • Stancliffe, R.J. & Lakin, C. (2004). Costs and outcomes of community services for persons with intellectual and developmental disabilities. Policy Research Brief 14(1). Minneapolis: University of Minnesota, Research and Training Center on Community Living.

19. Did the Pennhurst Results Meet the Scientific Test of Replication? • Yes • In every study – Better qualities of life in almost every way we know how to measure • Yes, 1356 people in Connecticut • Yes, 1000 people in Oklahoma • Yes, 400 people in New Hampshire • Yes, 1100 people in North Carolina • Yes, 200 people in Kansas • Yes, 400 people in Illinois • Yes, 2400 people in California • Studies repeated by other researchers • In other countries • Same results

20. The Issue of People with the Most Severe Disabilities (600 people, 6 years)

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

22. Did People with More Severe Disabilities Really Cost Much More in the Community?

23. The Issue of the Size of the Home(2,200 people in Oklahoma, 7 years) -0.4

24. Now We Have Followed More Than 7,000 People • As they moved out of institutions • Into regular homes in communities • Other researchers have gotten the same results • Australia, Canada, England, New Zealand, France, Sweden, etc.

25. Moving Away from Congregate Care – Orphanages and Institutions The most successful American social change in the past 100 years

26. Winston Churchill on America “You can always count on Americans to do the right thing - after they've tried everything else.”

27. Aim for One Common Vision? • All nations have multiple agencies • With different agendas and territoriality • Is there any kind of simple value statement that all could agree on? • Ours was the “Community Imperative” • All people, regardless of the severity of their disabilities, are entitled to community living. • Advocacy groups and agencies “signed” it • What advocacy group could lead this effort?

28. Options for Strong Focus • #1: Study the money! • Congregate care has high cost, high waste, poor outcomes • Pilot projects with strong scientific component • Must convince skeptics • Early intervention – stop the flow into segregation • (cost effectiveness is extremely well studied – contact COA) • Diversion from baby homes • Work in many countries shows orphanages/institutions cost more • Money follows person (individual budgets) • 21 years of research available from COA • Community pilot for people with the most severe disabilities • If we can show it works with them, …. It will work for all. • Small – family-like – seems to be the key to quality • Book of studies available from COA

29. Sharing • All of our studies, methods, instruments • Are free to use here • I envy you, here, today • You will be part of a wonderful change • Thank you for this chance to visit