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
 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
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
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.
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
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
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.
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
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
Number of People With Developmental Disabilities in State
Institutions versus Community Residential Settings 1952-2013
450
400
300
250
200
150
100
50
Institution
Community
12
09
06
03
00
97
94
91
88
85
82
79
76
73
70
67
64
61
58
55
0
52
1000s of People
350
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
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.
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)
Next: Closing An Institution
Families Were Against It
Strongly Agree
9%
Agree
5%
Unsure
14%
Disagree
9%
Strongly Disagree
63%
0%
10%
20%
30%
40%
50%
60%
70%
Later, the Families Were Strongly
in Favor
Very Satisfied
272
Somewhat Satisfied
104
Neutral
18
Somewhat Dissatisfied
20
Dissatisfied
6
0
50
100
150
# of Families
200
250
300
People Lived Much Longer
250
Cumulative Deaths
200
150
Pennhurst Model
Nat'l DC Model
Actual
100
50
0
1978 1979 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989
Year
Costs – Lower in Community
Pennhurst Longitudinal Study:
Who Pays?
$50,000
$1,000
$45,000
$1,000
$40,000
$21,000
$35,000
$30,000
$25,000
$36,000
$20,000
$15,000
$25,000
$10,000
$5,000
$3,000
$0
Institution
Community
Local
State
Federal
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.
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
The Issue of People with the Most
Severe Disabilities (600 people, 6 years)
Level of Retardation Labels of People Who Moved from
Institution to Community in CT, 1985-1991
45
40
38.5
Percent of Movers
35
30.1
30
25
20
16.1
15.3
15
10
5
0
Profound
Severe
Moderate
Mild
What Kind of People Made the
Largest Proportional Gains?
Connecticut Movers, 1985-1991:
Percentage Gain in Adaptive Behavior
30
28.4
Percent Gain from Baseline
25
20
15
9.5
10
5.3
5
1.3
0
Profound
Severe
Moderate
Mild
Did People with More Severe Disabilities
Really Cost Much More in the Community?
Total Costs by Level of Retardation
200
191
182
180
168
161
160
Per Diem Costs
140
120
100
80
60
40
20
0
Profound
Severe
Moderate
Mild
The Issue of the Size of the Home
(2,200 people in Oklahoma, 7 years)
8
7
6.7
Points of Gain in Independence
6.3
5.8
6
5
4.5
4
3
1.7
2
1
-0.4
0
-1
1
2
3
4-5
Number of People in the Home
6
-0.4
7-10
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.
Moving Away from Congregate Care
– Orphanages and Institutions
The most
successful
American
social change
in the past 100
years
Winston Churchill on America
“You can always count on
Americans to do the right
thing - after they've tried
everything else.”
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?
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
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