Disability%20Policy%20Issues%20in%20the%2021st%20Century

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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

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• 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

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Avoiding Mistakes

• 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

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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.

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70 Years of Evidence 1940s

• 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

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70 Years of Evidence 1960s

• 1965 Harlows 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

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70 Years of Evidence 2007

• 2007 Nelson et al. Bucharest Early
  Intervention Project
• Nelson CA 3rd1, 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 21318(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 131 (2010), pp 4661.

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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

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Europe and Americas 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

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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

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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.

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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)

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Next Closing An InstitutionFamilies Were
Against It
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Later, the Families Were Strongly in Favor
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People Lived Much Longer
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Costs Lower in Community
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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.

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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

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The Issue of People with the Most Severe
Disabilities (600 people, 6 years)
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What Kind of People Made the Largest Proportional
Gains?
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Did People with More Severe Disabilities Really
Cost Much More in the Community?
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The Issue of the Size of the Home(2,200 people
in Oklahoma, 7 years)
-0.4
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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.

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Moving Away from Congregate Care Orphanages and
Institutions

• The most successful American social change in the
  past 100 years

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Winston Churchill on America

• You can always count on Americans to do the
  right thing - after they've tried everything
  else.

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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?

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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/institutio
  ns 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

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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