150 Years of Movement Toward Community in the United States

150 Years of Movement Toward Community in the United States

James W. Conroy, Ph.D.The Center for Outcome Analysiswww.eoutcome.org

What is the Purpose of Human Services? Are people better off? Is this measurable? Yes, No, and partly . Today: the case of segregated models for citizens with disabilities How do we know theres a better way than institutional segregation? 40 years of studies and learning about whats really important..One message: The evidence is very strong about DI

Outline1. History & Trends2. Personal Journey3. The Science: How do we know people are better off?4. Economy of Scale ConceptsThe overall message: Overwhelming data, the evidence is VERY STRONG for small, family-like, community living

Very Big Versus SmallInstitution versus CommunityThis is a settled issueMedia exposure, scandals, court decisions, and a large body of researchInstitutions have declinedCommunity options are preferred in every way

Source of The Institutional ModelBrought to the U.S. in 1848By Samuel Gridley HoweFrom a model program in GermanyThe vision was a self-sufficient agrarian communityFree from pressures of normal lifeProtected, safe, healthyMassachusetts School for Idiotic Children (Fernald)

Regimentation 1915

Howe Changed by 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.Such persons [with disabilities] ... should be kept diffused among sound and normal persons.

150 Years of Institutionalization

Chart2

Braddock2006ResCostAvgs

Braddock 2006 data

16+ Private ICF/MR16+ State Operated

Institutional Decline, Community Rise

Chart4

1250

12753

1300

13255

1350

14157

1480

15559

1640

16861

1730

17663

1800

18565

1920

19367

1941

1941.5

1872

1844

1816

1739

16612

15816

15420

14424

13928

13233

12638

12044

11549

11055

10662

10372

10075

9782

9490

9194

8899

82104

76110

72117

68123

63135

58150

54165

50185

48205

46220

45235

43255

43275

42300

41325

40350

39.5365

39380

38390

37400

Institution

Community

Inst&Comm2008

YearInstitutionCommunity

521250

53127

541300

55132

561350

57141

581480

59155

601640

61168

621730

63176

641800

65185

661920

67193Number of People in Home & Community Based Waiver Programs, Developmental Disabilities

681941

691941.5

701872

711844

721816

731739

7416612

7515816

7615420

7714424

7813928

7913233

8012638

8112044

8211549

8311055

8410662

8510372

8610075

879782

889490

899194

908899

9182104

9276110

9372117

9468123

9563135

9658150

9754165

9850185

9948205

0046220

0145235

0243255

0343275

0442300

0541325

0640350

0739.5365

0839380

0938390

1037400

Inst&Comm2008

125

127

130

132

135

141

148

155

164

168

173

176

180

185

192

193

194

194

187

184

181

173

166

158

154

144

139

132

126

120

115

110

106

103

100

97

94

91

88

82

76

72

68

63

58

54

50

48

46

45

43

43

42

41

40

39.5

39

38

37

Number of Americans in Public Institutions (DD) 1950-2010

CA2 Round 7

0

53

0

55

0

57

0

59

0

61

0

63

0

65

0

67

1

1.5

2

4

6

9

12

16

20

24

28

33

38

44

49

55

62

72

75

82

90

94

99

104

110

117

123

135

150

165

185

205

220

235

255

275

300

325

350

365

380

390

400

Number of Americans in Home & Community Based Waiver Programs (DD) 1950-2010

CA2 Transposed

1250

12753

1300

13255

1350

14157

1480

15559

1640

16861

1730

17663

1800

18565

1920

19367

1941

1941.5

1872

1844

1816

1739

16612

15816

15420

14424

13928

13233

12638

12044

11549

11055

10662

10372

10075

9782

9490

9194

8899

82104

76110

72117

68123

63135

58150

54165

50185

48205

46220

45235

43255

43275

42300

41325

40350

39.5365

39380

38390

37400

Institution

Community

Number of People in Home & Community Based Waiver Programs, Developmental Disabilities

OK 2009

PA 1992

IN 1999

Institution

Community

NCI data 2006

nlivherg PEOPLE IN THIS HOMEdcig DECISION CONTROL INVENTORY SCORE, 0 TO 100intg TOTAL # INTEGRATIVE ACTIVITIES LAST MONTHpiqlg PERSONAL INTERVIEW SATISFACTION SCALEqlng QUALITY OF LIFE NOW, 0 TO 100qlchngg CHANGE IN QUALITY OF LIFE FROM LAST YEAR TO NOWstfwwpgstfsatcglikewwpgipsg INDIVIDUALIZED PRACTICES SCALE, 0 TO 100ersg ENVIRONMENTAL RATING SCALEprogresg REPORTED PROGRESS ON GOALS, 0 TO 100eppg

1Mean78.63031573962.541666666789.92195767282.321335127549.8969780222.75510204080.7948717949993.310439560459.464285714381.362318840679.440187006

N494836493049393915284638

2Mean74.986947622750.207792207884.53157349983.202095784349.40916455343.02272727271.76666666679.049180327985.906394330358.032786885280.309523809583.2236612594

N777746765277606146617063

3Mean68.359617031658.63218390885.858375420982.658361753249.40237824852.67528735631.24193548399.584615384678.744658119762.518656716479.308943089482.556122449

N868748873987626548678270

4Mean53.764017728134.919191919280.252798252881.23947131336.79846938783.49183006541.51020408169.228260869669.167263895559.030612244977.363636363685.993299949

N100993710256102989292989979

5Mean47.825471293831.551724137978.741736694779.649330554540.24165649173.38706896551.67148014449.130434782668.683776829263.626325088377.797408716184.0037176365

N29029085290162290277276275283283224

6Mean42.740285021322.722037652377.822718448681.819133708738.22288056183.83204134371.69977678579.353535353569.208593003166.92093541276.241778774385.2384014517

N902903139903489903896891898898892749

7Mean52.078714633228.315789473776.782881075679.557582142238.21840122243.83395989972.57894736849.210526315869.22562817364.342105263278.194444444475.6425060447

N1331334113362133133133133133132115

8Mean47.859535182729.115183246178.312501918980.845853707735.8012063053.71727748691.82198952889.378947368468.959338721270.026315789578.453752181580.5754443531

N1911914719098191191190189190191181

9Mean43.313683465531.410526315883.778739778781.022493131931.46798853323.56944444441.8759.437575.53390186274.179687580.409722222279.0166325922

N959521966996969696969686

10Mean56.536960664140.830188679279.261405261487.137155297543.41256569523.46069182392.50980392169.607843137373.224161459580.673076923181.803921568684.6503326605

N535313532353515151525149

11Mean61.283470206335.181818181880.014430014488.592657342747.02380952383.0719696970.66666666679.772727272772.743764172362.857142857184.606060606196.4682539683

N2222722622212221212221

12Mean43.682773109215.62562.857142857169.419642857130.714285714340.8759.7565.947802197868.7580.458333333375.0595238095

N881858888886

13Mean75.238095238119.66666666678676.7857142857252.94444444443.3333333333967.216117216153.333333333377.666666666773.3333333333

N332323333331

14Mean54.117647058825.666666666785.25641025644.61111111110.66666666678.666666666777.301587301678.333333333386.666666666798.2142857143

N3333333333

15Mean19.21880.1923076923753.955.49.867.6666666667737190.4047619048

N55515555555

TotalMean48.916211158630.09122459180.573804143681.458205229939.188558943.60398120671.75347400939.316279069870.411543301266.335431654777.711380063983.4420966115

N20172017523202010942022194319351883194619831690

nlivherg PEOPLE IN THIS HOMEdcig DECISION CONTROL INVENTORY SCORE, 0 TO 100intg TOTAL # INTEGRATIVE ACTIVITIES LAST MONTHpiqlg PERSONAL INTERVIEW SATISFACTION SCALEqlng QUALITY OF LIFE NOW, 0 TO 100qlchngg CHANGE IN QUALITY OF LIFE FROM LAST YEAR TO NOWstfwwpgstfsatcglikewwpgipsg INDIVIDUALIZED PRACTICES SCALE, 0 TO 100ersg ENVIRONMENTAL RATING SCALEprogresg REPORTED PROGRESS ON GOALS, 0 TO 100eppg

1Mean78.662.589.982.349.92.80.89.093.359.581.479.4

2Mean75.050.284.583.249.43.01.89.085.958.080.383.2

3Mean68.458.685.982.749.42.71.29.678.762.579.382.6

4Mean53.834.980.381.236.83.51.59.269.259.077.486.0

5Mean47.831.678.779.640.23.41.79.168.763.677.884.0

6Mean42.722.777.881.838.23.81.79.469.266.976.285.2

7Mean52.128.376.879.638.23.82.69.269.264.378.275.6

8Mean47.929.178.380.835.83.71.89.469.070.078.580.6

9Mean43.331.483.881.031.53.61.99.475.574.280.479.0

10Mean56.540.879.387.143.43.52.59.673.280.781.884.7

11Mean61.335.280.088.647.03.10.79.872.762.984.696.5

12Mean43.715.662.969.430.74.00.99.865.968.880.575.1

13Mean75.219.786.076.825.02.93.39.067.253.377.773.3

14Mean54.125.785.34.60.78.777.378.386.798.2

15Mean19.218.080.275.04.05.49.867.773.071.090.4

TotalMean48.930.180.681.539.23.61.89.370.466.377.783.4

N20172017523202010942022194319351883194619831690

EconomyOfScaleCharts

nlivherg PEOPLE IN THIS HOME123456789101112131415Total

MeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. DeviationMeanNStd. Deviation

dcig DECISION CONTROL INVENTORY SCORE, 0 TO 10078.6303157394924.395776485974.98694762277721.984114215668.35961703168623.327316893253.764017728110026.03940727147.825471293829025.759970283342.740285021390223.099607125852.078714633213322.992857762947.859535182719120.009950792543.31368346559521.441833320256.53696066415321.112298362761.28347020632215.304017931243.6827731092824.459948459875.2380952381317.155550855954.1176470588310.188534162219.2514.609753521548.9162111586201724.9722367665

intg TOTAL # INTEGRATIVE ACTIVITIES LAST MONTH62.54166666674838.829117355550.20779220787736.830457098258.6321839088736.988406399434.91919191929928.876117088631.551724137929024.10959149122.722037652390318.517691889628.315789473713318.969021164929.115183246119121.671648465331.41052631589523.644303320440.83018867925325.694758406735.18181818182219.860552823215.62589.515964030419.6666666667317.009801096225.666666666732.309401076818512.845232578730.091224591201725.3856779734

piqlg PERSONAL INTERVIEW SATISFACTION SCALE89.9219576723611.886671650384.5315734994612.691748220385.85837542094814.67547790680.25279825283712.68531806378.74173669478512.2166490977.822718448613911.162981595576.78288107564114.159943569578.31250191894712.015487712783.7787397787218.545181064479.26140526141314.872393082380.014430014478.47049221862.85714285711.86225.455844122780.573804143652312.8122009869

qlng QUALITY OF LIFE NOW, 0 TO 10082.32133512754910.483875344583.20209578437613.37247970782.65836175328710.710864789281.23947131310213.515347670979.649330554529012.758568234881.819133708790312.041399143279.557582142213312.982744686780.845853707719012.243403174281.02249313199610.527851209887.1371552975539.295725605188.5926573427229.444687023469.4196428571812.570410296276.785714285733.092947870785.256410256438.882311833780.192307692359.430322719681.4582052299202012.1914444226

qlchngg CHANGE IN QUALITY OF LIFE FROM LAST YEAR TO NOW49.8969780223023.949228049749.40916455345224.398761284849.40237824853922.423708798136.79846938785622.918960681540.241656491716222.82497796138.222880561848918.404469163438.21840122246219.304621537535.8012063059822.200480721931.46798853326910.165019126743.41256569522317.251927902447.0238095238611.45069533730.7142857143512.71498794212520751.39.18855894109420.3266565064

stfwwpg2.7551020408495.06141129593.0227272727775.83523835382.6752873563873.7231821973.49183006541023.71834845193.38706896552904.06293133413.83204134379032.90417261543.83395989971332.57093178853.71727748691912.22790934163.5694444444962.38724273493.4606918239532.80265269333.071969697221.8057622814482.0873770282.944444444431.05847549354.611111111131.63582576273.9553.063902743.603981206720223.2929867237

stfsatcg0.7948717949392.64753596651.7666666667602.52020087081.2419354839622.20792524721.5102040816982.80001803371.67148014442772.71809868891.69977678578962.85442711242.57894736841333.06547372961.82198952881912.16180680281.875962.3541676372.5098039216512.67860074680.6666666667211.52752523170.87581.80772153353.333333333332.88675134590.666666666731.15470053845.454.92950301751.753474009319432.7346532784

likewwpg9391.37649440329.0491803279611.8746220029.5846153846650.89951910239.2282608696921.02820937789.13043478262761.49094765219.35353535358911.16389329399.21052631581331.14846822619.37894736841900.93919866079.4375961.36738320979.6078431373510.77661911839.7727272727220.75162162359.7580.70710678129308.666666666731.15470053849.850.44721359559.316279069819351.2153017017

ipsg INDIVIDUALIZED PRACTICES SCALE, 0 TO 10093.3104395604158.314363280985.90639433034615.070735240178.74465811974811.806997693269.16726389559217.828891477368.683776829227516.294203977769.208593003189814.061685899969.22562817313314.922742036668.959338721218913.238114509475.5339018629610.849773218273.22416145955111.850342771272.7437641723218.386773900665.9478021978813.94246332467.216117216135.075606762177.301587301631.099714798567.6666666667511.093040861570.4115433012188314.7443023365

ersg ENVIRONMENTAL RATING SCALE59.46428571432820.336943473458.03278688526118.263777642462.51865671646716.697640542459.03061224499814.725287935263.626325088328313.989933865766.92093541289814.806401580964.342105263213312.85074110970.026315789519015.391688202474.17968759618.104074240780.67307692315217.79592501762.85714285712113.469542361568.75819.039432764753.3333333333311.547005383878.3333333333328.86751345957357.582875444166.3354316547194615.7084701087

progresg REPORTED PROGRESS ON GOALS, 0 TO 10081.36231884064613.392613790280.30952380957012.434993145279.30894308948211.510450966377.36363636369910.880518998377.797408716128311.62487385976.241778774389211.413897468478.194444444413211.349714375278.453752181519110.8298934780.4097222222969.95480772781.8039215686519.814315274884.6060606061226.567223700280.458333333387.048443484677.666666666738.736894948186.6666666667312.85820101477159.433981132177.7113800639198311.392438818

eppg79.4401870063821.902570525183.22366125946317.855822324882.5561224497020.024738943885.9932999497915.27429153884.003717636522416.468694983385.238401451774914.419770725675.642506044711522.034621377780.575444353118117.985478357179.01663259228621.866804813284.6503326605499.486050600496.46825396832110.060286906375.0595238095610.189739069973.33333333331.98.214285714333.092947870790.404761904855.3891898683.4420966115169016.8492911255

CostXSizePA

Report

SizetPROD2 HOURS PRODUCTIVE DAY ACTIVITY/MONTH 09tCISATIS CONS INTVW SATISFACTION 09tCICHOIC CONS INTVW CHOICEMAKING 09tCIINTEG CONS INTVW INTEGRATION 09tepp2 Elements of the Planning Process Scale 09tDCI Decision Control Inventory 09tQLT Quality of Life Then 09tQLN Qualilty of Life Now 09tQLCHNG Quality of life change 09tfrnyrstfrnPCPtfrncont

1Mean44.334056399192.022023809587.986111111174.820075757680.03458517872.826223586477.950818537679.52221314482.08125716993.33760144920.49091847273.8502169197

N461200180176366460409461409460323461

Std. Deviation51.820605170611.420087859322.056174227219.741362935113.19757753719.205358515611.048899719510.85048552637.94812226464.35269019160.8915019875.1055468511

2Mean38.796791443994.577625570888.83597883678.359788359877.377533577557.75617064977.289240200978.77355487651.52264153015.21292335120.3795358656.3978609626

N187736363150187167187167187158187

Std. Deviation49.510848060511.159626872115.361926707718.609219550613.170196689121.991681407810.377510738110.92431030267.11209563255.80810193080.81943807835.1639773495

3Mean42.944444444498.98989898998087.96296296381.543778801861.297742849277.63204537477.17490842490.88177951087.32583333350.3212.0444444444

N36111093136313631363536

Std. Deviation57.36198066143.350126050915.811388300813.888888888913.371808287218.89693970210.55383145878.6714579959.70463382235.52790964110.70061597556.3460423863

6Mean6093.827160493889.814814814877.777777777856.732486263751.568100358479.662698412779.6626984127-05.03611111110.356.8888888889

N189991618181818181018

Std. Deviation52.58047054148.536615238213.028932666211.78511301989.932799840515.66760813359.49147610139.43200235370.61249494696.91247392410.7472170598.6875765855

TotalMean43.189458689592.975784170387.948473282476.251621271178.74754020467.668204436777.807535797579.20601181821.81256077264.08629576790.4434093795.026994302

N702293262257563701625702625701526702

Std. Deviation51.547850462411.163296243920.155652180419.184791661213.678292991921.134439074110.791887185610.73158672217.71407833965.03442143910.85640251295.6614232492

ReportSize1236Total

MeanNMeanNMeanNMeanNMeanN

tPROD2 HOURS PRODUCTIVE DAY ACTIVITY/MONTH 0944.346138.818742.93660.01843.2702

tCISATIS CONS INTVW SATISFACTION 0992.020094.67399.01193.8993.0293

tCICHOIC CONS INTVW CHOICEMAKING 0988.018088.86380.01089.8987.9262

tCIINTEG CONS INTVW INTEGRATION 0974.817678.46388.0977.8976.3257

tepp2 Elements of the Planning Process Scale 0980.036677.415081.53156.71678.7563

tDCI Decision Control Inventory 0972.846057.818761.33651.61867.7701

tQLT Quality of Life Then 0978.040977.316777.63179.71877.8625

tQLN Qualilty of Life Now 0979.546178.818777.23679.71879.2702

tQLCHNG Quality of life change 092.14091.51670.931-0.0181.8625

tfrnyrs3.34605.21877.3365.0184.1701

tfrnPCP0.53230.41580.3350.4100.4526

tfrncont3.94616.418712.0366.9185.0702

Satisfaction 5 points

Integration

Size1234 PlusTotal

MeanMeanMeanMeanMeanN

tPROD2 HOURS PRODUCTIVE DAY ACTIVITY/MONTH 0944.338.842.960.043.2702

tCISATIS CONS INTVW SATISFACTION 0992.094.699.093.893.0293

tCICHOIC CONS INTVW CHOICEMAKING 0988.088.880.089.887.9262

tCIINTEG CONS INTVW INTEGRATION 0974.878.488.077.876.3257

tepp2 Elements of the Planning Process Scale 0980.077.481.556.778.7563

tDCI Decision Control Inventory 0972.857.861.351.667.7701

tQLT Quality of Life Then 0978.077.377.679.777.8625

tQLN Qualilty of Life Now 0979.578.877.279.779.2702EPP

tQLCHNG Quality of life change 092.11.50.9-0.01.8625

tfrnyrs3.35.27.35.04.1701

tfrnPCP0.50.40.30.40.4526DCI

tfrncont3.96.412.06.95.0702

Total Service Hours Per Month121.5127.7163.267.0

Quality of Life Change from Last Place Lived

Total Hours of Service & Support Per Month

CostXSizePA

92.0220238095

94.5776255708

98.9898989899

93.8271604938

CostXSizePA CLAs

74.8200757576

78.3597883598

87.962962963

77.7777777778

Size&AB OK

80.034585178

77.3775335775

81.5437788018

56.7324862637

Sheet1

72.8262235864

57.756170649

61.2977428492

51.5681003584

2.0812571699

1.5226415301

0.8817795108

-0

121.5

127.7

163.2

67

121.5

127.7

163.2

67

Report

size92categorizedlargestchga9278changemsidp92sihome92choice92intfrq92si92suma92summ92summs92thrs92srimp92ghms92pq92

1Mean17.8888888889-04.10204081637.857142857196.88775510250.979915775834.9387755102113.714285714319.938775510242.285714285713.03163265316.313541666727.244897959257.8

N937494949494949494949484940

Std. Deviation26.1459578352.857738033210.446779603414.484186779612.557478393611.900931383552.153382825421.35220519453.01667700234.330127018919.40565950671.4249244365.592147069213.1815722186

2Mean9.90909090910.05714285713.16847826093.668478260986.818149313546.9858617421.369565217493.793478260919.47282608742.326086956518.081256.412137681221.692307692357.1793478261

N44140184184184183184184184184184184182184

Std. Deviation13.65831918192.86072745338.70643790886.935604336220.693900105815.900249087729.025791203730.54908727263.05850434043.797061549119.14929965241.25333096757.31635918838.1102652089

3Mean14.7873831776-0.02883355180.93840985442.344904815279.723199969738.66963508069.109742441275.129899216119.438969764842.36618141124.21644270256.640767790317.314058956960.2056179775

N428763893893891893893893893893893890882890

Std. Deviation15.3277733773.05448460414.52838736065.626428001821.771286924714.575858040914.182635013329.79215993143.08146561363.968098498523.8780838291.16081718426.22506427899.5716686786

4Mean12.70149253730.28378378380.35465116281.895348837281.412278172437.91083099916.651162790779.372093023318.76162790742.029069767422.02810077526.644186046516.674418604762.4069767442

N67148172172170170172172172172172172172172

Std. Deviation14.54878410563.07290228332.75231564295.42795249620.440761139115.131189839211.896008905528.13149844843.38315982983.785826638916.95215024891.13627575686.40803928649.7745078481

5Mean12.21052631580.29473684211.11.7579.148757309935.90302787787.108333333380.891666666718.441.458333333328.77055555566.902542372917.704347826161.6

N3895120120120119120120120120120118115120

Std. Deviation12.94720651233.86163256245.84448314174.385326947616.113475830912.08560954611.858263674226.90374871053.31637140984.176556889522.43689768751.26467196955.50274877579.9040777613

6Mean19.21212121210.44736842111.53968253972.338624338681.45119743838.519503546111.015873015986.460317460319.507936507942.29100529124.29594356266.951146384518.058201058261.0634920635

N33114189189189188189189189189189189189189

Std. Deviation11.13484838183.0601408536.06303430685.894609890216.303350685211.523406217916.754001170425.1779784293.33041919224.101760590517.25508639520.8237786524.33341776347.0640075477

7Mean10.5714285714-0.47826086962.15277777782.333333333361.408450704236.61265432110.402777777874.097222222219.194444444442.041666666729.6442129636.798611111111.708333333364.8611111111

N723727271727272727272727272

Std. Deviation20.2308110142.72812898287.06241733795.096256565933.466354090916.257908010712.450080289630.63605522093.02402999883.628671040620.80764973841.20573015696.082617811211.215313419

8Mean10.02083333330.73134328360.36764705880.588235294170.653594771226.19631185813.455882352967.367647058820.117647058843.308823529420.56593137256.872549019614.920634920665.3382352941

N4867686868686868686868686368

Std. Deviation16.38043667532.35862112743.0316953131.260600355923.750843220416.16680449284.832828730535.60894756412.01878796032.558318903121.67094263850.91564513286.18870351557.4123944086

15Mean10.125-0.242.22222222220.194444444462.569444444419.51058201065.222222222250.666666666720.055555555643.194444444442.76759259266.11203703713.969696969760.8611111111

N1625363636363636363636363336

Std. Deviation23.28912478681.89912260446.02903029920.576662537822.428347107415.32309884127.830749320527.97039250962.61800845192.265510909832.45851123361.01694072126.82589210517.6984331533

TotalMean13.90144927540.09844192631.3269770052.438025799279.811343967138.642982127210.67302299579.282669657919.356702187342.297812675323.8342774356.663534046117.709163346660.6363636364

N6901412178317831778177817831783178317831783177717571771

Std. Deviation15.45146897213.04459141835.63361187166.047924106621.971533861215.240889844818.856364934530.58860961923.12399365693.894718680122.34051769131.15458791976.62441738839.4629762695

size92categorizedlargest1234567815Total

MeanMeanMeanMeanMeanMeanMeanMeanMeanMeanNStd. Deviation

chga927817.99.914.812.712.219.210.610.010.113.969015.4514689721

chgm92782.51.52.22.40.82.00.52.52.42.17094.4511753144

changea2.90.3-0.0-0.50.92.7-2.11.83.80.4141211.6649055703

changem-0.00.1-0.00.30.30.4-0.50.7-0.20.114123.0445914183

sidp924.13.20.90.41.11.52.20.42.21.317835.6336118716

sihome927.93.72.31.91.82.32.30.60.22.417836.0479241066

choice9296.986.879.781.479.181.561.470.762.679.8177821.9715338612

intfrq9251.047.038.737.935.938.536.626.219.538.6177815.2408898448

si9234.921.49.16.77.111.010.43.55.210.7178318.8563649345

suma92113.793.875.179.480.986.574.167.450.779.3178330.5886096192

summ9219.919.519.418.818.419.519.220.120.119.417833.1239936569

summs9242.342.342.442.041.542.342.043.343.242.317833.8947186801

thrs9213.018.124.222.028.824.329.620.642.823.8178322.3405176913

srimp926.36.46.66.66.97.06.86.96.16.717771.1545879197

ghms9227.221.717.316.717.718.111.714.914.017.717576.6244173883

pq9257.857.260.262.461.661.164.965.360.960.617719.4629762695

Report

Size99abc ADAPTIVE BEHAVIOR 98, 0 TO 100cbc CHALLENGING BEHAVIOR 98, 0 TO 100eppcprogresc REPORTED PROGRESS ON GOALS, 0 TO 100nsrvc NUMBER OF SERVICES IN WRITTEN PLANsrvhrscdphrscdcic DECISION CONTROL INVENTORY SCORE, 0 TO 100intc TOTAL # INTEGRATIVE ACTIVITIES LAST MONTHnqolnowanqolnowcqolnc QUALITY OF LIFE NOW, 0 TO 100qlchngc CHANGE IN QUALITY OF LIFE FROM LAST YEAR TO NOWstfsatccstfwwpclikewwpcipsc INDIVIDUALIZED PRACTICES SCALE, 0 TO 100pqc PHYSICAL QUALITY SCALE, 0 TO 100normc NORMALIZATION SCALE, 0 TO 100

1Mean54.719251336966.135084427859.091880341974.16726791734.731707317137.023437518.121951219561.789099919634.51411.268292682972.007853257914.69494047620.60606060610.97172619058.562586.674245294971.666162407771.2837837838

N40411833413241384041413332332832293837

Std. Deviation19.329786491820.867281235931.307155644513.16743480283.570884976134.755677151419.428323553524.70393716422.847319317605.375985445718.115825714727.1961167232.24915809161.14833781132.031009601217.164737109312.092730340721.4668444058

2Mean52.038027332168.119658119753.451132201170.90708070384.856.578767123323.008333333352.144206494238.713.966666666712.355555555680.148341242129.20090948940.31818181820.87752525259.057471264482.321480018173.820321263873.7689393939

N90904483907390909090908078886687898788

Std. Deviation19.444914000418.179972963234.10397611769.57173172133.288386100558.353149561421.580735856623.439601710422.81062732810.18051113454.37128297611.013511185916.31541459532.14714702210.70517314611.637896565416.457201698610.355798862214.7639890115

3Mean46.846384880273.603793466865.167855020868.02934731114.068493150761.074626865717.109589041146.091045252429.684931506813.958904109613.465753424780.389172642733.60580147550.41428571430.77935606069.042253521182.584579772176.078472489278.1828703704

N73733467736773737373737171704471727172

Std. Deviation21.266489837817.593965214633.170970665511.38659569632.194239726153.334511378915.638104854522.001540354217.18516536660.19988581222.369260267710.205772998714.45649123922.20337591540.83146979351.792337816713.09166484368.792054946814.9577694448

4Mean47.660427807585.536858974453.205128205166.84681637814.2553.948863636413.479166666747.704976395520.854166666713.645833333313.687583.335281739532.87240537240.27083333330.9662162162976.716870599874.085634277571.5277777778

N48481344484448474848484745483748474748

Std. Deviation19.160931389411.986589610937.462707002515.89619995333.205712985442.427077642513.681777885224.082307727812.20915175292.02631185072.02280876989.767251080119.21305159592.23834649580.73505150661.798344392314.47492298477.912273879112.2562925091

15Mean44.652406417160.98901098973.133012820571.45904195014.357142857153.535714285725.142857142940.110453545219.142857142913.928571428610.857142857175.730519480520.35714285711.92857142860.93055555569.285714285757.491496598669.608446294763.0952380952

N141481414141414141414111014614141114

Std. Deviation14.738940443522.16425743931.466747389912.09936742321.645840578257.42234364313.74412961624.631119834811.48147097820.26726124195.90771520149.722047367217.23520101992.49505004460.47556009861.266647387622.719483219712.060825798626.6975553705

TotalMean49.829482393372.086466165459.042235067969.84423368244.466165413554.479347826119.029135338350.417140935431.316981132113.909774436112.654135338379.527073018828.88453648520.46245059290.8881215478.992063492180.465451989473.995950348373.6486486486

N265266117241266230266262265266266242236253181252251254259

Std. Deviation19.801290816519.003901226633.661646621712.20482226132.986886742151.341569145118.34049923223.915412781920.36460960060.87703313433.951680058812.136590892219.17961972362.22619085360.81375763141.744637917216.78072042359.961974494316.6156291321

Size99123415Total

MeanMeanMeanMeanMeanMeanNStd. Deviation

abc ADAPTIVE BEHAVIOR 98, 0 TO 10054.752.046.847.744.749.826519.8012908165

cbc CHALLENGING BEHAVIOR 98, 0 TO 10066.168.173.685.561.072.126619.0039012266

eppc59.153.565.253.273.159.011733.6616466217

progresc REPORTED PROGRESS ON GOALS, 0 TO 10074.270.968.066.871.569.824112.2048222613

nsrvc NUMBER OF SERVICES IN WRITTEN PLAN4.74.84.14.34.44.52662.9868867421

srvhrsc37.056.661.153.953.554.523051.3415691451

dphrsc18.123.017.113.525.119.026618.340499232

dcic DECISION CONTROL INVENTORY SCORE, 0 TO 10061.852.146.147.740.150.426223.9154127819

intc TOTAL # INTEGRATIVE ACTIVITIES LAST MONTH34.538.729.720.919.131.326520.3646096006

qolnc QUALITY OF LIFE NOW, 0 TO 10072.080.180.483.375.779.524212.1365908922

qlchngc CHANGE IN QUALITY OF LIFE FROM LAST YEAR TO NOW14.729.233.632.920.428.923619.1796197236

stfsatcc0.60.30.40.31.90.52532.2261908536

stfwwpc1.00.90.81.00.90.91810.8137576314

likewwpc8.69.19.09.09.39.02521.7446379172

ipsc INDIVIDUALIZED PRACTICES SCALE, 0 TO 10086.782.382.676.757.580.525116.7807204235

pqc PHYSICAL QUALITY SCALE, 0 TO 10071.773.876.174.169.674.02549.9619744943

normc NORMALIZATION SCALE, 0 TO 10071.373.878.271.563.173.625916.6156291321

Table 17. Indicators of Basic Lifestyle Quality by Size of Home for Adult HCBS and

ICF/MR Recipients in Five* States

Persons with Disability in Residence

Lifestyle Indicator12 to 34 to 67+TotalTotal

N%N%N%N%N%

Ever Feel Lonely

No/rarely32555.40%26456.20%16551.70%8943.60%843

Sometimes19733.60%15533.00%8927.90%7838.20%51932.80%

Yes- often6511.10%5110.90%6520.40%3718.10%21813.80%

Total587100.00%470100.00%319100.00%204100.00%1580

Ever Afraid at Home

No/rarely49682.00%37879.40%25576.60%15676.50%1285

Sometimes8914.70%6914.50%5416.20%3718.10%24915.40%

Yes- often203.30%296.10%247.20%115.40%845.20%

Total605100.00%476100.00%333100.00%204100.00%1618

Likes Home/Place Lives

No254.00%183.70%246.90%2110.00%885.30%

In-between315.00%316.40%288.10%157.10%1056.30%

Yes56290.90%43889.90%29485.00%17482.90%146888.40%

Total618100.00%487100.00%346100.00%210100.00%1661

*Home size was not available in individual records for one of the 6 states

LonelyNo/RarelyYes/OftenEver AfraidNo/RarelyLikes HomeYes

155.411.1182.0190.9

2 to 356.210.92 to 379.42 to 389.9

4 to 651.720.44 to 676.64 to 685.0

7 plus43.618.17 plus76.57 plus82.9

Personal Choice Scale by Size, 2006, NCI

Level of Intellectual Disability

Persons with DD in HomeTotalSig.

MeanMeanMeanMeanMeanLevel of Personal Choice, 9 item scale

1.791.561.261.031.62511.62

1.561.391.220.771.3162 to 31.31

1.381.241.10.821.274 to 61.20

1.361.230.950.650.9987 plus0.99

TotalN=861N=467N=354N=405N=2,0871,2,3,4

Mean1.571.361.130.751.29

Main Effects: Level of Intellectual Disability (F=203.800, p < .001); Size of Residence (F=40.820, p < .001); Level of ID vs. Size of Residence (F=2.289, p < .05); R Squared = .373

1 Mild > moderate, severe and profound; 2 Mild > moderate > severe and profound; 3 Severe > profound; 4 Profound < mild, moderate, severe

5 1 person home > 2-3, 4-6, and 7 + person homes; 6 2-3 >1, 4-6, and 7+; 7 4-6 > 1, 2-3, and 7+; 8 7+ < 1, 2-3, and 4-6.

1.62

1.31

1.2

0.99

Disecomies of Scale: Too Big, Too Much Bureaucracy and Waste

Size # UnitsCost Per Unit

1000$100

2000$80

3000$65

4000$55

5000$50

6000$50

7000$50

8000$55

9000$63

10000$72

11000$89

12000$100

Economies of Scale: Efficiency


1000$100

2000$80

3000$65

4000$55

5000$50

6000

7000

8000

9000

10000

11000

12000

Steady Costs - More Size, Same Price


1000$100

2000$80

3000$65

4000$55

5000$50

6000$50

7000$50

8000

9000

10000

11000

12000

100

80

65

55

50

50

50

55

63

72

89

100

Number of Units Made

Cost Per Unit

100

80

65

55

50

6000

7000

8000

9000

10000

11000

12000


Cost Per Unit

100

80

65

55

50

50

50

8000

9000

10000

11000

12000


Cost Per Unit

55.81-3

50.866.4

50.765.9

52.266.4

CLA

ICF

$1000s Per Year

55.8

50.8

50.7

52.2

CLA

Size of Home

$1000s Per Year

Adaptive Behaviro Gain Over 6 Years

By Number of People Living in the Home

16.3

26.7

35.8

4-54.5

61.7

7-10-0.4

Oklahoma, 1990-1996

The version of the graph in this file is for transfer to PowerPoint, and therefore has no titles.

1-34-89-1617+

CLA55.850.850.752.2

ICF66.465.966.4

6.3

6.7

5.8

4.5

1.7

-0.4

Size of Community Home

Points Gained

Gains in Self-Care Over 6 Years:Oklahoma Data, 1990-1996, 850 People

Movement from Institution to CommunityFrom large, segregated, historically state of the art settingsTo small, integrated, more recent models of what a home means

For 100+ Years, What Did America Do With People Like Mike?Diagnose himExclude him from schoolTell his parents that he needed medical careThat he could never learn and would bring no joy to the familyThat he needed to live in a large facility

Change Began in 1970A personal note1970, just out of UniversityNo idea what to do with a degree in Physiological PsychologyGot a strange job by pure chanceWorking on a national survey of people with developmental disabilitiesRight at the national peak of institutions

Went to Collect Scientific DataAt an institution named Pennhurst State School and HospitalLocated near Valley Forge, the cradle of American libertyI was surprisedAnd sickened

Pennhurst: Poor Conditions2800 people lived thereIt was designed for 700People were left in cribs all day and nightBroken bones went untreatedProblem people had all teeth pulledBathing was often a hose sprayed at a group in a room with a floor drainWhy treat human beings this way?

Skewed Values in America1968: The average cost per person at Pennhurst was $5.90 per dayThe average cost of keeping a leopard at the Philadelphia zoo was $7.15 per dayIn the richest nation on Earth..

I Believed Then That We Should Improve the InstitutionsSpent 12 years working on thisWe worked in a model institution, built in 1972, not overcrowded, and with access to huge resources in money and University faculty and studentsI 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 SurpriseIn the midst of Americas efforts to create good institutionsA U.S. Federal Court declared Pennhurst to be Unconstitutional by its very natureBecause it was specifically and consciously designed to segregateAnd because the peoplehad lost skills (theyhad been harmed)

Judge Ordered All People Should Have a Chance to Live in SocietyI was a skepticDeinstitutionalization in the mental illness field had been a disaster and a disgraceI thought this would be, tooSo I wanted to do research on this

The Pennhurst Longitudinal StudyBegan in 1979Largest such study ever doneTracked 1,154 peopleVisited every person every yearSurveyed every family every yearMeasured qualities of life, satisfaction, costs(This process still continues in 2013)

Purposes of Pennhurst Longitudinal Study Track 1,154 people Are these people better off? In what way(s)? How much? At what cost?

The Outcomes Adaptive behavior Challenging behavior Health Health care Medications Services Productive activity Employment Physical quality Self-determination Individualization Integration Third party opinion Personal interviews (satisfaction) Family surveys (satisfaction)

What Kind of People?Average age 39 years at the beginning of the studyHad lived at Pennhurst an average of 24 years64% male33% had seizures13% blind4% deaf18% unable to walk50% nonverbal47% less than fully toilet trained40% reported to be violent at times86% severe or profound

What Kind of Community Homes?Community Living Arrangements3 peopleVery different policy from FinlandLive-in or shift staff24 hour staffingWith licensing, monitoring, and case management oversight

Pennhurst Class Members:Adaptive Behavior Development

Pennhurst Class Members: Improved Self-Control of Challenging Behavior

AB Growth

59.7

79

80

81

82

70.8

71.7

72.9

75.2

AB Average Score

Pennhurst Longitudinal Study:Adaptive Behavior Growth, 1978-1986

CB Improvement

18.04

79

80

81

82

18.27

18.47

18.67

18.8

CB Average Score

Initial Fam Att

0.09

0.05

0.14

0.09

0.63

Pennhurst Longitudinal Study:Initial 1979 Family Attitude Re: Community Placement

FamSat91

6

20

18

104

272

# of Families

Pennhurst Class Members in 1991:Family Satisfaction with Community Homes

PLS Costs

25000210001000

3000360001000

Federal

State

Local

Pennhurst Longitudinal Study:Who Pays?

Fam Perc Happy

43

32

25

0

0

Number of Families

Pennhurst Longitudinal Study:Family Perceptions of ChangeIn Person's General Happiness Since Moving, 1985

CT Fam PP

1859

1113

136

63

330

1986

1990

Number of Families

Mansfield Longitudinal Study:Changes in Family Attitudes Re: Community Placement

CTFamSat90

2

14

12

51

111

Number of Families

CT Family Survey 1990: How Satisfied Are You With Your Relative's Community Home?

Movers LMR

38.5

30.1

16.1

15.3

Percent

Percent of Movers

Level of Retardation Labels of People Who Moved from Institution to Community in CT, 1985-1991

CT Percent Gain by LMR

28.4

9.5

1.3

5.3

AB Gain

Percent Gain from Baseline

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

Costs by LMR

182

168

191

161

Avg. Cost

Per Diem Costs

Total Costs by Level of Retardation

CT Cons Sat 90

0.52188552190.7044025157

0.36026936030.241509434

0.11784511780.0540880503

Congregate

Community

How Satisfied Are You With Your Current Home?1092 CT Class Members in 1990

Age X AB Gain

3.9

4.7

Points of Gain

Movers Who Were Under 60 and Over 60 in 1985:Adaptive Behavior Gains from 1985 to 1990

PA&CT DI Data

Pennhurst Longitudinal Study: Adaptive Behavior Growth, 1978-1986

7859.7

79

80

81

82

8370.8

8471.7

8572.9

8675.2

Pennhurst Longitudinal Study: Challenging Behavior Improvement, 1978-1986

7818.04

79

80

81

82

8318.27

8418.47

8518.67

8618.80

Pennhurst Class Members in 1991:

Family Satisfaction with Community Homes

Dissatisfied6

Somewhat Dissatisfied20

Neutral18

Somewhat Satisfied104

Very Satisfied272

Pennhurst Longitudinal Study: Initial Family Attitudes Toward Community Placement, 1979

Strongly Agree9%42

Agree5%24PLS Family Satisfaction with Pennhurst, 1979

Unsure14%66Very Satisfied0.54

Disagree9%42Satisfied0.29

Strongly Disagree63%297Neutral0.11

472Dissatisfied0.05

Very Dissatisfied0.02

1.01

Pennhurst Longitudinal Study: Family Perceptions of Change in General Happiness, 1985

Much Happier43

Happier32

Same25

Less Happy0

Much Less Happy0

Pennhurst Longitudinal Study: Who Pays?

InstitutionCommunity

Federal$25,000$3,000

State$21,000$36,000

Local$1,000$1,000

$47,000$40,000

Mansfield Longitudinal Study: Changes in Family Attitudes Toward Community Placement

19861990

Strongly Agree1859

Agree1113

Unsure136

Disagree63

Strongly Disagree330

8181

CT Family Survey 1990

How Satisfied Are You With Your Relative's Community Home?

Very Dissatisfied2


Neutral12


Very Satisfied111

190

CT SPI Comparisons

CT Deinstitutionalization of Mansfield 1985-1991


LevelPercent

Profound38.5

Severe30.1

Moderate16.1

Mild15.3

100

Percentage Gain in Adaptive Behavior

LevelAB Gain

Profound28.4

Severe9.5

Moderate1.3

Mild5.3


LevelAvg. Cost

Profound182

Severe168

Moderate191

Mild161

CT Data for AB Gain by Age

Amount of Adaptive Behavior Gain From 1985 to 1990

Under 60 in 19853.9

60 or Over in 19854.7

CT Data for Gain by Health Status

CT Data for Consumer Satisfaction 1990

How satisfied are you with your current home or living arrangement?

CongregateCommunity

3.Very satisfied155560

2.Somewhat satisfied107192

1.Unsatisfied or very unsatisfied3543

2977951092

CongregateCommunity

3.Very satisfied52%70%

2.Somewhat satisfied36%24%

1.Unsatisfied or very unsatisfied12%5%

Studies

PANHLAOKCTCANCKSINNJ

Court-Ordered?YesYesYesYesYesYesYesNoNoNo

Number of People1100600268380590120090088200575383

Number of Years14359544212

Community Model3 person4 to 6VariedSupp LivVaried4 to 64 to 62 by 4Supp Liv4 to 6

Average Age43392525443746433936Age at placement, average

% Severe/Profound86%66%68%8686%68%26%100%67%7%Only for Movers

% Nonambulatory18%21%17%27%23%28%12%58%23%13%Only for Movers

Areas of Study

MTS only

Court-Ordered?Number of PeopleNumber of YearsCommunity ModelAverage Age% Severe/ Profound% Nonamb-ulatoryYears

PAYes1100143 person4386%18%78-92

NHYes60034 to 63966%21%79-86

LAYes2685Varied2568%17%80-86

OKYes3809Supp Liv2586%27%90-99

CTYes5905Varied4486%23%85-90

CAYes120044 to 63768%28%94-99

NCYes90044 to 64626%12%92-99

KSNo8822 by 443100%58%97-99

INNo2001Supp Liv3967%23%98-99

NJNo5724 to 6367%13%89-93

STSNoVaried5578%

5383

MTS Beh Change

CT 569 People Longitudinal Design

Adaptive

19851990

49.554.0

Challenging

19851990

79.080.2

MTS Beh Change

AB Growth

Points on Scale of 100

Adaptive Behavior Growth Among Mansfield Movers, 1985-1990

State Outcomes

79

80.2


Improvement in Control of Challenging Behavior Among Mansfield Movers, 1985-1990

DC Costs

Adaptive Behavior Data

State# of YearsTime-1AverageAdaptiveBehaviorScoreTime-2AverageAdaptiveBehaviorScoreGainon100PointScalesPercent from Baseline

Pennsylvania14 years39.850.210.4

New Hampshire8 years53.062.39.3

Louisiana7 years56.264.28.0

Oklahoma6 years41.347.46.2

Connecticut5 years49.554.04.5

California3 years44.746.72.0

North Carolina2 years52.754.82.2

Kansas1 year33.134.81.7

Indiana.5 year46.448.82.4

New Jersey2 years78.280.62.457 people moved to community

Challenging Behavior

State# of YearsTime-1AverageChallengingBehaviorScoreTime-2AverageChallengingBehaviorScoreGainon100PointScales


New Hampshire8 years79.678.6-1.0







Indiana.5 year72.169.9-2.2

New Jersey2 years92.989.8-3.1Negative outcome!

Integration Changes

State# of YearsTime-1 Integrative Activities ScoreTime-2 Integrative Activities ScoreChange

Pennsylvania14 years9.2

New Hampshire8 years10.0

Louisiana7 years







New Jersey3 years4.511.97.4

CT Inst's

3577017000

4234019000

4380022000

4818026000

5329030000

5767034000

6424038000

6241540822

6241544000

6971548500

7920553000

8614057221

10110559000

10147062000

12446565000

12410068000

10840572000

12702075000

12848084000

14016086000

150197.588000

16133091000

172188.7594000

CT

US

$ Per Person Per Year

Growth of Costs of Public Institutions, CT and US

DI #s & $

3058

2887

2932

2965

2860

2866

2802

2690

2577

2430

2342

2157

1943

1727

1626

1545

1426

1333

1273

1218

1141.5

1073.1

Number of People

YEARINSTCOMMCOST

52125012510001.0

1300130

56135013514001.4

1480148

60164016418681.9

1730173

64180018022502.3

1920192

68194119530503.1

1872189

72181618764006.4

16612178

76154201741500015.0

13928167

80126381642494424.9

11549164

84106621684082240.8

10075175

8894901845722157.2

9088991876200062.0

92761101866800068.0

94681231917500075.0

956313519884000est.

965815020886000est.

975416521988000est.

Small ICFHCB

81

829985

83

84

85

8621165

87

88

89

90

913847951027

92

93

94

California Institutional PopulationCosts Per Day Per PersonBraddock Data:My old data from Harvard Graphics

What's This??YearPeopleCost

7797647751771241950746

789480786278143

799165797079147

808828808680165

8185578110381180

828145821078217619551285

8376998311183173

8474588412484185

8572308514520785207207

8669588616622786227227

876804871722298722922919601868

8867728817722588225225

89673867388920424989249249

90672267229021124990249249

91672067209122525491254254

9266836629922292399223923919652361

93641293238Est93238

94604894260Est94260

95544595282Est95282

96482396297Est96297

974200Est97310Est97310Est19704635

984000Est98323Est

197511000

National Institutions, MR and MH

YEAR

YearMRMH198024944

1950125510

129520

133531

137542

141555198544271

195514555947556

14955454516

15354957221

157544

161538199065000

196016453270000

16752775000

17351680000

17750583300

180490199586500

196518747589000

19245293500

193426199897500

193399

189370

1970186338

184308

181275

173249

166216

1975161193

154178

146163

139150

132141

1980126133

120125

115118

110111

106105

1985103100

10095

9790

9487

9185

19908883

8382

7781

7180

6779

19956378

5777

5276

49

46

200043

Kansas Institutional PopulationsCosts Per Day Per Person

77145677119

78140678127

79137979129

80132780136

81130581137

82131682134

83132783128

84136084127

85134585134

86129486150

87122387164

88114988185

891052673889207

901017672290224

911015672091229

92943662992235

9389793234

9483694244

9574195268

9669696272

97596Est97282Est

98496Est98292Est

Connecticut Public Institutional PopulationsCosts Per Day Per Person

7730587798

78288778116

79293279120

80296580132

81286081146

82286682158

83280283176

84269084171

85257785171

86243086191

87234287217

88215788236

89194389277

90172790278

91162691341

92154592340

931426-11993297

941333-9394348

951273-6095352

961218-5596384

971142Est97412Est

981073Est98442Est

99472Est

Costs Per Year Per Person

YearCTNation

773577017000

784234019000

794380022000

804818026000

815329030000

825767034000

836424038000

846241540822

856241544000

866971548500

877920553000

888614057221

8910110559000

9010147062000

9112446565000

9212410068000

9310840572000

9412702075000

9512848084000

9614016086000

9715019888000Est

9816133091000Est

9917218994000Est

In 1996, CT expended $639 million in the developmental disabilities area# Dollars% Dollars# People

Of the $639, $173 was expended for congregate careCongregate17300000027073552%171627%100815.850815851

The remaining $466 was expended for community services and supportsCommunity46600000072926448%464873%100258.17555938

639000000100000000%6364100%

No point to be made from that analysis

&A

Page &P

Pennhurst: Strong Initial Family Resistance to Community Idea

DI #s & $

YEARINSTCOMMCOST

52125012510001.0

1300130

56135013514001.4

1480148

60164016418681.9

1730173

64180018022502.3

1920192

68194119530503.1

1872189

72181618764006.4

16612178

76154201741500015.0

13928167

80126381642494424.9

11549164

84106621684082240.8

10075175

8894901845722157.2

9088991876200062.0

92761101866800068.0

94681231917500075.0

956313519884000est.

965815020886000est.

975416521988000est.

Small ICFHCB

81

829985

83

84

85

8621165

87

88

89

90

913847951027

92

93

94

197511000


YEAR

YearMRMH198024944

1950125510

129520

133531

137542

141555198544271

195514555947556

14955454516

15354957221

157544

161538199065000

196016453270000

16752775000

17351680000

17750583300

180490199586500

196518747589000

19245293500

193426199897500

193399

189370

1970186338

184308

181275

173249

166216

1975161193

154178

146163

139150

132141

1980126133

120125

115118

110111

106105

1985103100

10095

9790

9487

9185

19908883

8382

7781

7180

6779

19956378

5777

5276

49

46

200043



7797647751771241950746

789480786278143

799165797079147

808828808680165

8185578110381180

828145821078217619551285

8376998311183173

8474588412484185

8572308514520785207207

8669588616622786227227

876804871722298722922919601868

8867728817722588225225

89673867388920424989249249

90672267229021124990249249

91672067209122525491254254

9266836629922292399223923919652361

93641293238Est93238

94604894260Est94260

95544595282Est95282

96482396297Est96297

974200Est97310Est97310Est19704635

984000Est98323Est


77145677119

78140678127

79137979129

80132780136

81130581137

82131682134

83132783128

84136084127

85134585134

86129486150

87122387164

88114988185

891052673889207

901017672290224

911015672091229

92943662992235

9389793234

9483694244

9574195268

9669696272

97596Est97282Est

98496Est98292Est


7730587798

78288778116

79293279120

80296580132

81286081146

82286682158

83280283176

84269084171

85257785171

86243086191

87234287217

88215788236

89194389277

90172790278

91162691341

92154592340

931426-11993297

941333-9394348

951273-6095352

961218-5596384

971142Est97412Est

981073Est98442Est

99472Est


YearCTNation

773577017000

784234019000

794380022000

804818026000

815329030000

825767034000

836424038000

846241540822

856241544000

866971548500

877920553000

888614057221

8910110559000

9010147062000

9112446565000

9212410068000

9310840572000

9412702075000

9512848084000

9614016086000

9715019888000Est

9816133091000Est

9917218994000Est




639000000100000000%6364100%


Pennsylvania Public Institutional PopulationsCosts Per Day Per Person

YearPeopleYearCost/Day

77918977151

78819678172

79777879183

80805480158

81781281167

82684382193

83677983191

84636284186

85580785193

86560086176

87496287186

88442688191

89415189214

90404390214

91392591215

92380792228

933739-6893227

943616-1239422921

953460-1569525011

963272-1889626115

973000Est97276Est

982650Est98291Est

992350Est99306Est

&A

Page &P

#Inst1850-1969

0

1

2

3

4

6

8

10

13

20

35

55

80

110

145

180

212

213

211

209

220

233

248

262

283

# of Institutions

150 years data

1950125

Entire United States, 1850 to 2000129

Number of PeopleNumber of Facilities

1850018500133

18550.118551137

18600.318602141

18652186531955145

1870418704149

1875618756153

1880818808157

188511188510161

1890141890131960164

189518189520167

190027190035173

190536190555177

191045191080180

19155519151101965187

1920651920145192

1925751925180193

1930851930212193

1935951935213189

194010519402111970186

19451151945209184

19501251950220181

19551451955233173

19601641960248166

196518719652621975161

19701861970283154

19751611975275146

19801261980255139

19851031985230132

19908819901951980126

1995631995170120

2000432000140.115

150 # people

0

0.1

0.3

2

4

6

8

11

14

18

27

36

45

55

65

75

85

95

105

115

125

145

164

187

186

161

126

103

88

63

43

1000s of People

150 # Inst's

0

1

2

3

4

6

8

10

13

20

35

55

80

110

145

180

212

213

211

209

220

233

248

262

283

275

255

230

195

170

140

# of Institutions

PA&CT OutcmDat


7859.7

79

80

81

82

8370.8

8471.7

8572.9

8675.2


7818.04

79

80

81

82

8318.27

8418.47

8518.67

8618.80



Dissatisfied6


Neutral18


Very Satisfied272


Strongly Disagree63%297Strongly Agree9%42

Disagree9%42PLS Family Satisfaction with Pennhurst, 1979Agree5%24

Unsure14%66Very Satisfied0.54Unsure14%66

Agree5%24Satisfied0.29Disagree9%42

Strongly Agree9%42Neutral0.11Strongly Disagree63%297

472Dissatisfied0.05


1.01


Much Less Happy0Much Happier43

Less Happy0Happier32

Same25Same25

Happier32Less Happy0

Much Happier43Much Less Happy0



Federal$25,000$3,000

State$21,000$36,000

Local$1,000$1,000

$47,000$40,000


19861990

Strongly Agree1859

Agree1113

Unsure136

Disagree63


8181



Very Dissatisfied2


Neutral12


Very Satisfied111

190

CT SPI Comparisons



LevelPercent

Profound38.5

Severe30.1

Moderate16.1

Mild15.3

100


LevelAB Gain

Profound28.4

Severe9.5

Moderate1.3

Mild5.3


LevelAvg. Cost

Profound182

Severe168

Moderate191

Mild161



Under 60 in 19853.9

60 or Over in 19854.7




CongregateCommunity




2977951092

CongregateCommunity




PLS AB

59.7

79

80

81

82

70.8

71.7

72.9

75.2

AB Average Score


PLS CB

18.04

79

80

81

82

18.27

18.47

18.67

18.8

CB Average Score

PLS T1 Fam

0.63

0.09

0.14

0.05

0.09

PLS FamSat91

6

20

18

104

272

# of Families

Pennhurst Class Members in 1991:Family Satisfaction with Community Homes

PLS FHappy91

0

0

25

32

43

Number of Families


PLS Costs

25000210001000

3000360001000

Federal

State

Local


CT Fam PP

1859

1113

136

63

330

1986

1990

Number of Families


CTFamSat90

2

14

12

51

111

Number of Families


CT Cons Sat 90

0.52188552190.7044025157

0.36026936030.241509434

0.11784511780.0540880503

Congregate

Community


Movers LMR

38.5

30.1

16.1

15.3

Percent

Percent of Movers



28.4

9.5

1.3

5.3

AB Gain



Costs by LMR

182

168

191

161

Avg. Cost

Per Diem Costs


Age X AB Gain

3.9

4.7

Points of Gain


AB Gain Graph, OK

6.3

6.7

5.8

4.5

1.7

-0.4

Number of People in the Home

Points of Gain in Independence

Size&AB OK



16.3

26.7

35.8

4-54.5

61.7

7-10-0.4

Oklahoma, 1990-1996


Studies



Number of People1100600268380590120090088200575383






Areas of Study

MTS only


PAYes1100143 person4386%18%78-92

NHYes60034 to 63966%21%79-86

LAYes2685Varied2568%17%80-86


CTYes5905Varied4486%23%85-90

CAYes120044 to 63768%28%94-99

NCYes90044 to 64626%12%92-99

KSNo8822 by 443100%58%97-99

INNo2001Supp Liv3967%23%98-99

NJNo5724 to 6367%13%89-93

5383

STSNo730Varied5578%29%

MTS Beh Change


Adaptive

19851990

49.554.0

Challenging

19851990

79.080.2

MTS Beh Change

49.5

54

AB Growth



State Outcomes

79

80.2



DC Costs

























Integration Changes




Louisiana7 years








CT Inst's

3577017000

4234019000

4380022000

4818026000

5329030000

5767034000

6424038000

6241540822

6241544000

6971548500

7920553000

8614057221

10110559000

10147062000

12446565000

12410068000

10840572000

12702075000

12848084000

14016086000

150197.588000

16133091000

172188.7594000

CT

US



US Deinst

3058

2887

2932

2965

2860

2866

2802

2690

2577

2430

2342

2157

1943

1727

1626

1545

1426

1333

1273

1218

1141.5

1073.1

Number of People

People in Connecticut's Institutions, 1977-1998

PA DI #s

PA DI #s

Thousands

Deinstitutionalization of People with Mental Retardation in the United States

PA DI $

PA DI $

9189

8196

7778

8054

7812

6843

6779

6362

5807

5600

4962

4426

4151

4043

3925

3807

3739

3616

3460

3272

3000

2650

2350

People in Pennsylvania's Public Institutions, 1977 to 1999

151

172

183

158

167

193

191

186

193

176

186

191

214

214

215

228

227

229

250

261

276

291

306

Cost/Day

Dollars Per Day

Costs of PA's Public Institutions

Pennhurst: 1991 Community Family Satisfaction

DI #s & $

YEARINSTCOMMCOST

52125012510001.0

1300130

56135013514001.4

1480148

60164016418681.9

1730173

64180018022502.3

1920192

68194119530503.1

1872189

72181618764006.4

16612178

76154201741500015.0

13928167

80126381642494424.9

11549164

84106621684082240.8

10075175

8894901845722157.2

9088991876200062.0

92761101866800068.0

94681231917500075.0

956313519884000est.

965815020886000est.

975416521988000est.

Small ICFHCB

81

829985

83

84

85

8621165

87

88

89

90

913847951027

92

93

94

197511000


YEAR

YearMRMH198024944

1950125510

129520

133531

137542

141555198544271

195514555947556

14955454516

15354957221

157544

161538199065000

196016453270000

16752775000

17351680000

17750583300

180490199586500

196518747589000

19245293500

193426199897500

193399

189370

1970186338

184308

181275

173249

166216

1975161193

154178

146163

139150

132141

1980126133

120125

115118

110111

106105

1985103100

10095

9790

9487

9185

19908883

8382

7781

7180

6779

19956378

5777

5276

49

46

200043



7797647751771241950746

789480786278143

799165797079147

808828808680165

8185578110381180

828145821078217619551285

8376998311183173

8474588412484185

8572308514520785207207

8669588616622786227227

876804871722298722922919601868

8867728817722588225225

89673867388920424989249249

90672267229021124990249249

91672067209122525491254254

9266836629922292399223923919652361

93641293238Est93238

94604894260Est94260

95544595282Est95282

96482396297Est96297

974200Est97310Est97310Est19704635

984000Est98323Est


77145677119

78140678127

79137979129

80132780136

81130581137

82131682134

83132783128

84136084127

85134585134

86129486150

87122387164

88114988185

891052673889207

901017672290224

911015672091229

92943662992235

9389793234

9483694244

9574195268

9669696272

97596Est97282Est

98496Est98292Est


7730587798

78288778116

79293279120

80296580132

81286081146

82286682158

83280283176

84269084171

85257785171

86243086191

87234287217

88215788236

89194389277

90172790278

91162691341

92154592340

931426-11993297

941333-9394348

951273-6095352

961218-5596384

971142Est97412Est

981073Est98442Est

99472Est


YearCTNation

773577017000

784234019000

794380022000

804818026000

815329030000

825767034000

836424038000

846241540822

856241544000

866971548500

877920553000

888614057221

8910110559000

9010147062000

9112446565000

9212410068000

9310840572000

9412702075000

9512848084000

9614016086000

9715019888000Est

9816133091000Est

9917218994000Est




639000000100000000%6364100%


Pennsylvania Public Institutional PopulationsCosts Per Day Per Person

YearPeopleYearCost/Day

77918977151

78819678172

79777879183

80805480158

81781281167

82684382193

83677983191

84636284186

85580785193

86560086176

87496287186

88442688191

89415189214

90404390214

91392591215

92380792228

933739-6893227

943616-1239422921

953460-1569525011

963272-1889626115

973000Est97276Est

982650Est98291Est

992350Est99306Est

&A

Page &P

#Inst1850-1969

0

1

2

3

4

6

8

10

13

20

35

55

80

110

145

180

212

213

211

209

220

233

248

262

283

# of Institutions

150 years data

1950125

Entire United States, 1850 to 2000129

Number of PeopleNumber of Facilities

1850018500133

18550.118551137

18600.318602141

18652186531955145

1870418704149

1875618756153

1880818808157

188511188510161

1890141890131960164

189518189520167

190027190035173

190536190555177

191045191080180

19155519151101965187

1920651920145192

1925751925180193

1930851930212193

1935951935213189

194010519402111970186

19451151945209184

19501251950220181

19551451955233173

19601641960248166

196518719652621975161

19701861970283154

19751611975275146

19801261980255139

19851031985230132

19908819901951980126

1995631995170120

2000432000140.115

150 # people

0

0.1

0.3

2

4

6

8

11

14

18

27

36

45

55

65

75

85

95

105

115

125

145

164

187

186

161

126

103

88

63

43

1000s of People

150 # Inst's

0

1

2

3

4

6

8

10

13

20

35

55

80

110

145

180

212

213

211

209

220

233

248

262

283

275

255

230

195

170

140

# of Institutions

PA&CT OutcmDat


7859.7

79

80

81

82

8370.8

8471.7

8572.9

8675.2


7818.04

79

80

81

82

8318.27

8418.47

8518.67

8618.80



Dissatisfied6


Neutral18


Very Satisfied272


Strongly Disagree63%297Strongly Agree9%42

Disagree9%42PLS Family Satisfaction with Pennhurst, 1979Agree5%24

Unsure14%66Very Satisfied0.54Unsure14%66

Agree5%24Satisfied0.29Disagree9%42

Strongly Agree9%42Neutral0.11Strongly Disagree63%297

472Dissatisfied0.05


1.01


Much Less Happy0Much Happier43

Less Happy0Happier32

Same25Same25

Happier32Less Happy0

Much Happier43Much Less Happy0



Federal$25,000$3,000

State$21,000$36,000

Local$1,000$1,000

$47,000$40,000


19861990

Strongly Agree1859

Agree1113

Unsure136

Disagree63


8181



Very Dissatisfied2


Neutral12


Very Satisfied111

190

CT SPI Comparisons



LevelPercent

Profound38.5

Severe30.1

Moderate16.1

Mild15.3

100


LevelAB Gain

Profound28.4

Severe9.5

Moderate1.3

Mild5.3


LevelAvg. Cost

Profound182

Severe168

Moderate191

Mild161



Under 60 in 19853.9

60 or Over in 19854.7




CongregateCommunity




2977951092

CongregateCommunity




PLS AB

59.7

79

80

81

82

70.8

71.7

72.9

75.2

AB Average Score


PLS CB

18.04

79

80

81

82

18.27

18.47

18.67

18.8

CB Average Score

PLS T1 Fam

0.63

0.09

0.14

0.05

0.09

PLS FamSat91

6

20

18

104

272

# of Families

PLS FHappy91

0

0

25

32

43

Number of Families


PLS Costs

25000210001000

3000360001000

Federal

State

Local


CT Fam PP

1859

1113

136

63

330

1986

1990

Number of Families


CTFamSat90

2

14

12

51

111

Number of Families


CT Cons Sat 90

0.52188552190.7044025157

0.36026936030.241509434

0.11784511780.0540880503

Congregate

Community


Movers LMR

38.5

30.1

16.1

15.3

Percent

Percent of Movers



28.4

9.5

1.3

5.3

AB Gain



Costs by LMR

182

168

191

161

Avg. Cost

Per Diem Costs


Age X AB Gain

3.9

4.7

Points of Gain


AB Gain Graph, OK

6.3

6.7

5.8

4.5

1.7

-0.4

Number of People in the Home

Points of Gain in Independence

Size&AB OK



16.3

26.7

35.8

4-54.5

61.7

7-10-0.4

Oklahoma, 1990-1996


Studies



Number of People1100600268380590120090088200575383






Areas of Study

MTS only


PAYes1100143 person4386%18%78-92

NHYes60034 to 63966%21%79-86

LAYes2685Varied2568%17%80-86


CTYes5905Varied4486%23%85-90

CAYes120044 to 63768%28%94-99

NCYes90044 to 64626%12%92-99

KSNo8822 by 443100%58%97-99

INNo2001Supp Liv3967%23%98-99

NJNo5724 to 6367%13%89-93

5383

STSNo730Varied5578%29%

MTS Beh Change


Adaptive

19851990

49.554.0

Challenging

19851990

79.080.2

MTS Beh Change

49.5

54

AB Growth



State Outcomes

79

80.2



DC Costs

























Integration Changes




Louisiana7 years








CT Inst's

3577017000

4234019000

4380022000

4818026000

5329030000

5767034000

6424038000

6241540822

6241544000

6971548500

7920553000

8614057221

10110559000

10147062000

12446565000

12410068000

10840572000

12702075000

12848084000

14016086000

150197.588000

16133091000

172188.7594000

CT

US



US Deinst

3058

2887

2932

2965

2860

2866

2802

2690

2577

2430

2342

2157

1943

1727

1626

1545

1426

1333

1273

1218

1141.5

1073.1

Number of People

People in Connecticut's Institutions, 1977-1998

PA DI #s

PA DI #s

Thousands

Deinstitutionalization of People with Mental Retardation in the United States

PA DI $

PA DI $

9189

8196

7778

8054

7812

6843

6779

6362

5807

5600

4962

4426

4151

4043

3925

3807

3739

3616

3460

3272

3000

2650

2350

People in Pennsylvania's Public Institutions, 1977 to 1999

151

172

183

158

167

193

191

186

193

176

186

191

214

214

215

228

227

229

250

261

276

291

306

Cost/Day

Dollars Per Day

Costs of PA's Public Institutions

Different Question: Has Your Relatives General Happiness Changed Since Moving?

DI #s & $

YEARINSTCOMMCOST

52125012510001.0

1300130

56135013514001.4

1480148

60164016418681.9

1730173

64180018022502.3

1920192

68194119530503.1

1872189

72181618764006.4

16612178

76154201741500015.0

13928167

80126381642494424.9

11549164

84106621684082240.8

10075175

8894901845722157.2

9088991876200062.0

92761101866800068.0

94681231917500075.0

956313519884000est.

965815020886000est.

975416521988000est.

Small ICFHCB

81

829985

83

84

85

8621165

87

88

89

90

913847951027

92

93

94

197511000


YEAR

YearMRMH198024944

1950125510

129520

133531

137542

141555198544271

195514555947556

14955454516

15354957221

157544

161538199065000

196016453270000

16752775000

17351680000

17750583300

180490199586500

196518747589000

19245293500

193426199897500

193399

189370

1970186338

184308

181275

173249

166216

1975161193

154178

146163

139150

132141

1980126133

120125

115118

110111

106105

1985103100

10095

9790

9487

9185

19908883

8382

7781

7180

6779

19956378

5777

5276

49

46

200043



7797647751771241950746

789480786278143

799165797079147

808828808680165

8185578110381180

828145821078217619551285

8376998311183173

8474588412484185

8572308514520785207207

8669588616622786227227

876804871722298722922919601868

8867728817722588225225

89673867388920424989249249

90672267229021124990249249

91672067209122525491254254

9266836629922292399223923919652361

93641293238Est93238

94604894260Est94260

95544595282Est95282

96482396297Est96297

974200Est97310Est97310Est19704635

984000Est98323Est


77145677119

78140678127

79137979129

80132780136

81130581137

82131682134

83132783128

84136084127

85134585134

86129486150

87122387164

88114988185

891052673889207

901017672290224

911015672091229

92943662992235

9389793234

9483694244

9574195268

9669696272

97596Est97282Est

98496Est98292Est


7730587798

78288778116

79293279120

80296580132

81286081146

82286682158

83280283176

84269084171

85257785171

86243086191

87234287217

88215788236

89194389277

90172790278

91162691341

92154592340

931426-11993297

941333-9394348

951273-6095352

961218-5596384

971142Est97412Est

981073Est98442Est

99472Est


150 Years of Movement Toward Community in the United States

Documents

community livingvery

normal persons

years of studies

years of movement

public institutions

2010ca2 round

institutional segregation

institutional modelbrought