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Health and Health Care During America’s Deinstitutionalization and Disability Rights Movements Reflections on a Half Century of Progress James W. Conroy, Ph.D. The Center for Outcome Analysis, www.eoutcome.org Developmental Disabilities Nurses Association Orlando, May 3, 2014 Three Themes Today Community – People are better off – Deinstitutionalization has enhanced outcomes – quality of life, health, and longevity Mortality scare in community debunked – The past 18 years of “scare” about higher mortality in the community is the result of a simple counting error Future: Relationships & quality of life – Real life quality means relationships & participation – Without which health & safety are hollow – The real goal of health care for people is to be able to “have a good life” (or “to get my life back”) First, A Bit of History History is important Those who ignore history are doomed to... Major in something else…. For 100+ Years, What Did America Do With People Like Mike? Diagnose him Exclude him from school Tell his parents that he needed medical care That he could never learn and would bring no joy to the family That he needed to live in a large facility Why Did Parents Do This? Because professionals told them to Primarily doctors Doctors had authority Knew “what’s best” With the best intentions 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 18 50 18 60 18 70 18 80 18 90 19 00 19 10 19 20 19 30 19 40 19 50 19 60 19 70 19 80 19 90 20 00 20 02 20 04 20 06 20 08 20 10 20 12 1000s of People 150 Years of Institutionalization 200 180 160 140 120 100 80 60 40 20 0 Year 18 50 18 60 18 70 18 80 18 90 19 00 19 10 19 20 19 30 19 40 19 50 19 60 19 70 19 80 19 90 20 00 20 05 # of Institutions Number of Public Institutions 300 250 200 150 100 50 0 Number of People in Institutional and Community Homes (DD) 450 400 350 300 250 200 150 100 50 0 06 03 00 97 94 Community 91 88 85 82 79 76 73 70 67 64 61 58 55 52 Institution U.S. Deinstitutionalization – Developmental Disabilities Versus Mental Illness 600 500 300 200 100 Calendar Year Developmental Disabilities Mental Illness 20 05 20 07 20 09 20 11 20 13 20 00 19 95 19 90 19 85 19 80 19 75 19 70 19 65 19 60 19 55 0 19 50 1000s of People 400 Source of The Institutional Model Brought to the U.S. in 1848 By Samuel Gridley Howe From a “model program” in Germany The vision was a self-sufficient agrarian community Free from pressures of normal life Protected, safe, healthy Acceptance of the Institutional Model First publicly funded facilities -- 1848 Fernald Center, Massachusetts 1849 Dorothea Dix Center, North Carolina 1849 California Prison Ship, San Francisco Bay – 30 inmates – Stockton 1851 All meant to do good By 1866, Samuel Gridley Howe Was Saying This: “… 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.” Such persons [with disabilities] ... should be kept diffused among sound and normal persons. How Did America Respond to the Advice of its Greatest Expert? 300 Quick! Build more! Diagnose more people! Keep the facilities full! We need more staff! We need higher pay! # of Institutions Make them bigger! 250 200 150 100 50 WE STILL NEED 18 50 18 60 18 70 18 80 18 90 19 00 19 10 19 20 19 30 19 40 19 50 19 60 19 70 MORE STAFF! 0 The Dark Side of Good Intentions We adopted and spread the “Eugenics” period of American history, 1880 to about 1920 Social Darwinism was the key concept America decided “These people are inferior” They cannot be permitted to breed They should be isolated from society Thereby we could improve the human race Thinking later adopted by Germany’s Nazi party - using Oliver Wendell Holmes’ writings “This Is Where I Came In” 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 Went to Collect Scientific Data At an institution named “Pennhurst State School and Hospital” Located near Valley Forge, the cradle of American liberty I was stunned Saddened Disappointed in my country This – during Vietnam, civil rights, and women’s liberation movements? Pennhurst: Poor Conditions 2800 people lived there Horribly overcrowded People were left in cribs all day and night Broken bones went untreated “Problem” people had all teeth pulled “Bathing” was often a hose sprayed at a group in a room with a floor drain Skewed Values in the US 1969: The average cost per person at Pennhurst was $5.90 per day The average cost of keeping a leopard at the Philadelphia zoo was $7.15 per day Was this the Economy of Scale thinking at work? I Believed Then That We Should Improve the Institution Spent 12 years working on this We worked in a model institution, built in 1972, not overcrowded, and with access to huge resources in money and University faculty and students I was able to show scientifically that tremendous resources did result in minor skill development and small improvements in qualities of life But We Got A Big Surprise In the midst of America’s efforts to create “good” institutions A U.S. Federal Court declared Pennhurst to be “Unconstitutional by its very nature” Because it was specifically and consciously designed to segregate And because the people – had lost skills (they – had been harmed) Judge Ordered All People Should Have a Chance to Live in Society I was a skeptic Deinstitutionalization in the mental illness field had been a disaster and a disgrace I thought this would be, too So I wanted to do research on this 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 (This process still continues in 2007) Purposes of Pennhurst Longitudinal Study Track 1,154 people Are these people better off? In what way(s)? How much? At what cost? What problems and deficiencies can be detected and addressed? Aspects of Quality of Life power to make one’s own life choices (self determination) skill development emotional adjustment challenging behavior attitudes and experience of caregivers health use of medications earnings hours per week of productive activity relationships family contacts financial interest in the home satisfaction individual wishes, and ambitions home environment family/next friend opinions and satisfaction integration individual planning process What Kind of People? Average age 39 years 4% deaf at the beginning of the study Had lived at Pennhurst an average of 24 years 64% male 33% had seizures 13% blind 18% unable to walk 50% nonverbal 47% less than fully toilet trained 40% reported to be violent at times 86% “severe or profound” What Kind of Community Homes? “Community Living Arrangements 3 people Some with live-in staff Most with shift staff 24 hour staffing With licensing, monitoring, and case management oversight Pennhurst Results: Were People Better Off? Independence Yes, 14% gain Challenging Behavior Health Yes, 8% improvement Integration Choicemaking No change in general health, longevity increased Large increases in outings and friendships Increased opportunities to make choices Pennhurst Results: Were People Better Off? Consumer Satisfaction Family Satisfaction Those who could communicate with us were much happier in every way, would never want to go back Families initially opposed the move, changed their minds; overwhelmingly in favor; and very surprised Pennhurst Results: Were People Better Off? Qualities of Environments: Physical Quality Yes, scores increased from 76 to 86 (12% increase) Normalization Yes, scores increased from -232 to +172 Individualization Yes, scores increased from 58 to 65 (12% increase) Pennhurst Results: Were People Better Off? Productivity Services Services Services Costs Increased day program hours, employment, earnings, household chores Increased teaching time Increased Case Manager contacts Increased therapies Down from $47,000 to $40,000 (about 15%) The Pennhurst Longitudinal Study: 1154 People, 20 Years INDEPENDENCE Increased 14 scale points (100) SOCIAL BEHAVIOR Improved 8 scale points (100) SELF-DETERMINATION Increased Choice making Increased: Day program hours, Employment, Earnings, Household chores Increased Outings, Friendships More positive: Neighbors, General Public, Media Much happier (those able): In every area; never want to go back Radical, dramatic shift from anti to pro: Perceived improvements in every area Enhanced: Physical quality, Individualization, Normalization Increased services: More teaching/training, More therapies, Higher goal attainment, More Case Manager contact, More consumer involvement, Enhanced planning process, Increased monitoring Illustrated the outcomes PRODUCTIVITY INTEGRATION COMMUNITY ATTITUDES CONSUMER SATISFACTION FAMILY SATISFACTION QUALITIES OF ENVIRONMENTS SERVICE DELIVERY PROCESS CASE STUDIES COSTS Decreased by 26% (Matched comparison) Did the Pennhurst Results Meet the Scientific Test of Replication? 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 California Coffelt Study, 2001: Family Perceptions – “Much Better Off” in Every Way – Including Health and Dental Care! Privacy Getting out and getting around Happiness Comfort Overall quality of life Making choices What he or she does all day Treatment by staff/attendants Relationship with friends Safety Food Dental Health Relationship with family 0.0 1.0 2.0 Then 3.0 Now 4.0 5.0 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. The Mortality Issue Death Rates: Institution Versus Community In 1996, a few researchers published a paper It claimed that death rates were higher in California’s community homes than in the institutions Using a lot of complex math, they said death rate in community was 72% higher than in the institutions (Also 72% higher in FAMILY homes than in the institutions -- !!! No one noticed this finding. More about that later.) The First Study Strauss, D., & Kastner, T. (1996). Comparative Mortality of People with Mental Retardation in Institutions and the Community. American Journal on Mental Retardation, 101, 1, 26-40. Impact – Courts & Media This paper led to later papers Altogether 7 published studies (Citations) This body of work became a “death scare” Tactic used in every deinstitutionalization case Voice of the Retarded hired and paid: – Lawyers (Bill Sherman, Tom York) – Researchers (Ted Kastner, Kevin Walsh) They made sure the death scare was entered into every court record And they sought wide media attention Most recently raised in a joint legislative session on closures in New Jersey (by shouting advocates) The Entire Foundation of the Strauss Studies: DC Mortality All Strauss & Kastner studies are founded on their estimate of the Developmental Center (DC) mortality rate Original 1996 study, Strauss & Kastner reported: – 16.0 per 1,000 per year California state agency (DDS) actually counted each death, by name and date, and reported – 18.2 per thousand per year (There are more details & clues about errors) Which Figure Was Right? Lakin, K.C. (1999). – Observations on the California Mortality Studies. Mental Retardation, 36, 395-400. The difference between Strauss and the state agency’s department of institution (DDS) was about 149 people. Can we believe that both DDS reported MORE deaths than actually occurred in the institutions? – When have bureaucrats every reported MORE bad news than they have to? The Strauss & Kastner count was WRONG. What Was the Cause? Strauss & Kastner obtained all mortality data from the California Department of Health Services – These Vital Statistics tapes contained all deaths in the state, including locations A standard practice at California institutions:: People who were dying were moved to local community hospitals for specialized intensive care When they died in these community hospitals, Strauss & Kastner counted them as “community deaths” They were not counted as institutional DC deaths That’s how Strauss & Kastner undercounted DC deaths The Foundation of the Work was Fatally Flawed A gross underestimate of DC mortality Made all subsequent multiple regression models and comparisons invalid The true situation is likely to be the opposite of Strauss & Kastner’s conclusions Replication? Strauss & Kastner continued to claim that they had not undercounted And that they had plenty of publications But – It’s actually replication that’s the criterion of good science Cold fusion was published – but not replicated by other scientists No one has replicated Strauss & Kastner Strauss was repudiated by his own colleagues at his university Most recently contradicted by a controlled research design: – Paul Lerman, Dawn Hall Apgar, and Tameeka Jordan. Deinstitutionalization and Mortality: Findings of a Controlled Research Design in New Jersey. Mental Retardation: Vol. 41, No. 4, pp. 225-236. The Real Facts: Pennhurst Mortality 250 Cumulative Deaths 200 150 Pennhurst Model Nat'l DC Model Actual 100 50 0 1978 1979 1980 1981 1982 1983 1984 1985 Year 1986 1987 1988 1989 Phases of Disability History Medical Model 1850-1970 Professional Model 1970-1990 Self-Advocacy, rights, and self-determination 1990-present All about control and power – Who’s in charge of my life? One of our central dilemmas has been Medicaid Accepting tons of money through the old Medical Model is a very mixed blessing “Health & Safety” Primary goal of Medicaid, HCBS, Waivers But – What promotes health most efficiently? Relationships – intimacy – someone is “there for me” More powerful predictor of health than whether or not you smoke – or your weight – or your blood pressure! “Connectedness,” Health, and Survival “TWINS STUDIES” -- For similar groups of people 100 men with congestive heart disease 50 of them had 3 or more contacts with close or intimate or trusted friends per week The other 50 had fewer than 3 contacts The difference in survival rate after 5 years was: 7 times higher for the “connected” men Ornish, Dean. (1999). Love & Survival : 8 Pathways to Intimacy and Health. New York: Harper & Collins. The Roseto “Mystery” Malcolm Gladwell’s Outliers book Pennsylvania town of Roseto All immigrants from village of Roseto Valfortore in Italy Became its own “tiny self-sufficient world” Dr. Stewart Wolf discovered incredibly low rate of heart disease over 50 years – half the average for the U.S. Smoked, drank, ate lots, worked way too hard Decades of study – not genes, habits, weight, or diet Only the social fabric of overwhelming interconnectedness has explained the data All of the Roseta houses contained three generations of the family. Rosetans took care of their own. Heart attacks practically absent in men over 65. A Call to Rethink and Recommit We should not be fostering medical “dominance” The purpose of health care is to allow people to enjoy life Real life quality is about friends, engagement, freedom Just as the Direct Support Worker profession is adopting the “servant leadership” model We are here to serve, not to dictate We are here to liberate, respect rights, and encourage inclusion in the mainstream We are lucky to be part of such a noble movement Thoughts About the Future The Affordable Care Act Great changes coming Some will bring reductions in “medical model” of support Example: NY ADAPT occupied NYSNA office in March over 100 hrs About nurse delegation of some care to non-nurses Essential for full use of Community First Choice rule We must – and will – end Medicaid’s “Institutional Bias” What Is the #1 Thing That Would Improve Health Care Quality? My opinion: A simple checklist approach In a very decentralized community support system, people can’t be seen by docs & nurses every week or month Call it a scale, instrument, tool, or checklist Give a way for Direct Support Workers to “know what to look for” Make sure it’s applied regularly The signs of health deterioration are 90% simple and easy to detect This would, in my opinion, extend lives and avoid health crises more than any other action The Checklist Manifesto: How to Get Things Right – Atul Gawande, Holt & Company, 2009 Good or Bad? Probably the most successful “social experiment” in America this century “You can always count on Americans to do the right thing - after they've tried everything else.” Winston Churchill Thank You www.eoutcome.org Values People Families Professionals Legislators People Having friends Having money Being able to go places Having control Families Health Health care Safety Permanence Freedom from abuse Professionals Integration Independence Employment Sexuality Self-determination Legislators Never mind all that What does it cost?