Virginia’s Newest Opportunity: Improve Quality of Life & Support More People Through the Settlement James W. Conroy, Ph.D. The Center for Outcome Analysis www.eoutcome.org
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Virginia’s Newest Opportunity: Improve Quality of Life & Support More People Through the Settlement James W. Conroy, Ph.D. The Center for Outcome Analysis.
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Slide 2
Virginias Newest Opportunity: Improve Quality of Life &
Support More People Through the Settlement James W. Conroy, Ph.D.
The Center for Outcome Analysis www.eoutcome.org
Slide 3
Todays Outline 4 1. History & Trends -
Deinstitutionalization 4 2. Personal Journey 4 3. The Science: How
do we know people are better off? 4 4. Economy of Scale Concepts 4
5. Virginias great opportunity Better lives for 1000s of people
Better results for each public dollar Need: Independent,
Individualized, Annual, Quality of Life Tracking System To keep the
system honest and convince any skeptics
Slide 4
Very Big Versus Small Institution versus Community 4 This is a
settled issue Pennhurst Study et seq. 4 Media, scandals, courts,
Olmstead decision 4 Institutions have declined 4 Community options
are preferred in every way
Slide 5
Source of The Institutional Model 4 Brought to the U.S. in 1848
4 By Samuel Gridley Howe 4 From a model program in Germany 4 The
vision was a self- sufficient agrarian community 4 Free from
pressures of normal life 4 Protected, safe, healthy 4 Massachusetts
School for Idiotic Children (Fernald)
Slide 6
By 1866, Howe Said This: 4 all such institutions are unnatural,
undesirable, and very liable to abuse. 4 We should have as few of
them as is possible, and those few should be kept as small as
possible. 4 Such persons [with disabilities]... should be kept
diffused among sound and normal persons.
Slide 7
Regimentation 1915
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And This (In 1866!): 4 all such institutions are unnatural,
undesirable, and very liable to abuse. 4 We should have as few of
them as is possible, and those few should be kept as small as
possible. 4 Such persons [with disabilities]... should be kept
diffused among sound and normal persons.
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And Finally (in 1866!): 4 I would take heed, however, against
multiplying them unnecessarily. 4 I would keep them as small as I
could. 4 I would take the most stringent measurements for guarding
against those undesirable effect 4 and for dispensing with as many
of them as may be possible.
Slide 11
Skewed Values in America 4 1969: The average cost per person at
Pennhurst was $5.90 per day 4 The average cost of keeping a leopard
at the Philadelphia zoo was $7.15 per day 4 Was this the Economy of
Scale thinking at work?
Slide 12
Institutional Decline, Community Rise
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Movement from Institution to Community From large, segregated,
historically state of the art settings To small, integrated, more
recent models of what a home means
Slide 15
For 100+ Years, What Did America Do With People Like Mike? 4
Diagnose him 4 Exclude him from school 4 Tell his parents that he
needed medical care 4 That he could never learn and would bring no
joy to the family 4 That he needed to live in a large facility
Slide 16
Why Did Parents Do This? 4 Because professionals told them to 4
Primarily doctors 4 Doctors had authority 4 Knew whats best 4 With
the best intentions
Slide 17
Acceptance of the Institutional Model 4 First publicly funded
facilities --- 4 1848 Fernald Center, Massachusetts 4 1849 Dorothea
Dix Center, North Carolina 4 1849 California Prison Ship, San
Francisco Bay 30 inmates Stockton 1851
Slide 18
We Did Not Stop There 4W4We adopted and spread the eugenics
scare period of human history 4141880-1920 4A4America decided These
people are inferior 4T4They cannot be permitted to breed 4T4They
should be isolated from society for that and other reasons
Slide 19
Americas Sad History in the Disability Field 4 Americas great
judge, Oliver Wendell Holmes, was the source of many of these ideas
4 As we all know, the writings of Holmes were later used
extensively by the Nazis 4 At this time in U.S. history, the
facilities were named things like Pennhurst Home for the
Segregation of the Feeble Minded and Epileptic
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This Is Where I Came In 4 A personal note 4 1970, just out of
University 4 No idea what to do with a degree in Physiological
Psychology 4 Got a strange job by pure chance 4 Working on a
national survey of people with developmental disabilities 4 Right
at the national peak of institutions
Slide 22
The Pennhurst Longitudinal Study 4 Began in 1979 4 Largest such
study ever done 4 Tracked 1,154 people 4 Visited every person every
year 4 Surveyed every family every year 4 Measured qualities of
life and satisfaction and costs 4 (This process still continues in
2007)
Slide 23
Purposes of Pennhurst Longitudinal Study 4 Track 1,154 people 4
Are these people better off? 4 In what way(s)? 4 How much? 4 At
what cost? 4 What problems and deficiencies can be detected and
addressed?
Slide 24
Aspects of Quality of Life 4 power to make ones own life
choices (self determination) 4 skill development 4 emotional
adjustment 4 challenging behavior 4 attitudes and experience of
caregivers 4 health 4 use of medications 4 earnings 4 hours per
week of productive activity 4 relationships 4 family contacts 4
financial interest in the home 4 satisfaction 4 individual wishes,
and ambitions 4 home environment 4 family/next friend opinions and
satisfaction 4 integration 4 individual planning process
Slide 25
What Kind of People? 4 Average age 39 years at the beginning of
the study 4 Had lived at Pennhurst an average of 24 years 4 64%
male 4 33% had seizures 4 13% blind 4 4% deaf 4 18% unable to walk
4 50% nonverbal 4 47% less than fully toilet trained 4 40% reported
to be violent at times 4 86% severe or profound
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Pennhurst Class Members: Adaptive Behavior Development
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Pennhurst Class Members: Improved Self-Control of Challenging
Behavior
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Pennhurst: Strong Initial Family Resistance to Community
Idea
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Pennhurst: 1991 Community Family Satisfaction
Slide 30
Different Question: Has Your Relatives General Happiness
Changed Since Moving?
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What Kind of People Made the Largest Proportional Gains?
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Pennhurst Mortality
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Pennhurst Costs Study, 1982
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Did the Pennhurst Results Meet the Scientific Test of
Replication? 4 Yes, 1356 people in Connecticut 4 Yes, 1000 people
in Oklahoma 4 Yes, 400 people in New Hampshire 4 Yes, 1100 people
in North Carolina 4 Yes, 200 people in Kansas 4 Yes, 400 people in
Illinois 4 Yes, 2400 people in California
Slide 35
Now We Have Followed More Than 7,000 People 4A4As they moved
out of institutions 4I4Into regular homes in communities 4O4Other
researchers have gotten the same results 4A4Australia, Canada,
England, New Zealand, France, Sweden, etc.
Slide 36
Movement from Institution to Community From large, segregated,
historically state of the art settings To small, integrated, more
recent models of what a home means
Slide 37
Questions? 4 What is the status of state institutions in your
state and the prognosis for the future? 4 Poll: How many states are
now free of state institutions for people with intellectual &
developmental disabilities? 4 Poll: In what year will the last
public institution close?
Slide 38
Economics 4 The notion of Economy of Scale 4 Would seem to
imply that larger settings would cost less per person 4 But how do
we explain $$$ of institutions? The epitome of assembly line
thinking Actually cost the MOST The most costly human service EVER
> $200,000 4 Is there such a thing as Diseconomy of Scale? 4
Yes
Slide 39
Economy of Scale 1: Larger Organization, Lower Cost Per
Unit
Slide 40
Economy of Scale 2: Diminishing Returns
Slide 41
Economy of Scale 3: Diseconomy of Scale
Slide 42
Economy of Scale 4 Large institutions are the highest cost
National average now over $200,000/person 4 Institutions must be
above the point of diminishing returns 4 Where is the tipping point
within community settings? 4 When we consider homes size 1 to 10? 4
What is the best size? (On the average)
Slide 43
Scientific Literature: Sociology 4 (Slaters classic ideal size
5 never too big, never too small)
Slide 44
Scientific Literature: Organizational & Industrial
Psychology 4 (Little known scientific questioning of entire Economy
of Scale assumption) 4 (Misapplication of industrial production
models to human service systems)
Slide 45
Tug of War & Individual Effort 4 Kohler, back in 1927 4
Measured Tug of War games by # of players 4 Up to size 12 4 Extra
person did NOT add full strength 4 Each new person pulled 10% less
energetically 4 Free Ride phenomenon in groups
Slide 46
Cost: Economy of Scale Idea 4 In economics, EFFICIENCY
(production of quality, salable products) increases with size
(modern doubts) 4 Human services quality product = better quality
of life 4 When size gets above 6, quality drops 4 So we try to fix
it by adding staff 4 Then the larger settings get more costly 4 But
the outcomes do not improve 4 Because the extra staff interact more
with EACH OTHER and NOT with the people in the home
Slide 47
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PA 1992: Per Diem Cost x Size
Slide 49
Did People with More Severe Disabilities Really Cost Much More
in the Community?
Slide 50
What Size Is Best? 4 We do have a lot of evidence 4 Size
studies published by Conroy 2011 4 A few examples
Slide 51
Progress in Independent Functioning by Size of Home: 2200
People in Oklahoma, US 1990-1996 (100 point scale) -0.4
Slide 52
Loneliness Negative Reponses National Core Indicators 2008,
N=1580
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Like Home? Negative Responses National Core Indicators, 2008,
N=1661
Slide 54
Choice & Self-Determination National Core Indicators
2006
Slide 55
Human Economy of Scale 4 Younger = More need for individual
attention 4 Severe disabilities = More need for individual
attention 4 Smaller home = More individual attention 4 More
individual attention = better development 4 Small 4 More Individual
Attention 4 Better Outcomes 4 Break point: around 6 above 6 we get
bad outcomes 4 Best outcomes 1 to 4 4 Book to read Small is
Beautiful: Economics As If People Mattered
Slide 56
Good or Bad Social Policy? Probably the most successful
American social experiment of the Boomer generation
Slide 57
You can always count on Americans to do the right thing - after
they've tried everything else. Winston Churchill
Slide 58
Virginias Time for Change is NOW YearCenterSize 2009
2014Southside Virginia Training Center (SVTC) Closes 254
2015Northern Virginia Training Center (NVTC) Closes 172 2016 0 2017
0 2018Southwestern Virginia Training Center (SWVTC) Closes 156 2019
0 2020Central Virginia Training Center (CVTC) Closes 490 1072
Slide 59
Virginia Will Really Need Evidence: A Cost/OutcomeTracking
Project 4 An independent scientific assessment 4 Are people better
off after leaving? 4 Independent 4 Annual 4 Every person, every
year, face to face 4 Qualities of life, services & supports,
costs, family surveys 4 Every year, with scientific confidence, we
can tell all stakeholders Are people better off, in what way(s), at
what cost?
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Thank You And Good Luck!
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Q & A Center for Outcome Analysis Havertown, PA
www.eoutcome.org [email protected] 610.668.9001