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

0

50

100

150

200

250

300

350

400

450

52 55 58 61 64 67 70 73 76 79 82 85 88 91 94 97 00 03 06 09 12

1000

s of

Peo

ple

Institution Community

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 InstitutionFamilies Were Against It

63%

9%

14%

5%

9%

0% 10% 20% 30% 40% 50% 60% 70%

Strongly Disagree

Disagree

Unsure

Agree

Strongly Agree

Later, the Families Were Strongly in Favor

6

20

18

104

272

0 50 100 150 200 250 300

Dissatisfied

Somewhat Dissatisfied

Neutral

Somewhat Satisfied

Very Satisfied

# of Families

People Lived Much Longer

0

50

100

150

200

250

1978 1979 1980 1981 1982 1983 1984 1985 1986 1987 1988 1989

Year

Cum

ulat

ive

Dea

ths

Pennhurst Model

Nat'l DC Model

Actual

Costs – Lower in Community

$25,000

$21,000

$1,000

$3,000

$36,000

$1,000

$0

$5,000

$10,000

$15,000

$20,000

$25,000

$30,000

$35,000

$40,000

$45,000

$50,000

Institution Community

Pennhurst Longitudinal Study:Who Pays?

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

38.5

30.1

16.115.3

0

5

10

15

20

25

30

35

40

45

Profound Severe Moderate Mild

Per

cen

t o

f M

ove

rs

What Kind of People Made the Largest Proportional Gains?

Connecticut Movers, 1985-1991:Percentage Gain in Adaptive Behavior

28.4

9.5

1.3

5.3

0

5

10

15

20

25

30

Profound Severe Moderate Mild

Perc

en

t G

ain

fro

m B

aseli

ne

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

Total Costs by Level of Retardation

182

168

191

161

0

20

40

60

80

100

120

140

160

180

200

Profound Severe Moderate Mild

Per

Die

m C

osts

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

6.36.7

5.8

4.5

1.7

-0.4-1

0

1

2

3

4

5

6

7

8

1 2 3 4-5 6 7-10

Number of People in the Home

Po

ints

of

Gai

n in

Ind

epen

den

ce

-0.4

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