Follow the MoneyJim ConroyCenter for Outcome Analysiswww.eoutcome.org

Presentation PurposeTrace trends in money and funding patternsSee how and why our funding models influence how services and supports are set up and deliveredExplain why these models make it very hard to implement self-determination and related modern approachesRecommend things we need to do about it

150 Years of Institutionalization in the U.S.

Chart1

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

48

46

44

43

42

42

Year

1000s of People

HCB&ICF Trends

42245

Estimated

8283848586878889909192939495969798990001

GA0000000251603533593595568481,6192,3322,4002,8473,4004,000

Est.

8283848586878889909192939495969798990001

TX00007070412417485973968968156427283658475356666158126%

8283848586878889909192939495969798990001

U.S. Total1381560417972226901718022689286893507739838512716242986604122075149185190230221909239021261830291003327713

305.8%220.7%26.3%-24.3%32.1%26.4%22.3%13.6%28.7%21.8%38.7%41.0%22.2%27.5%16.7%7.7%9.5%

CA04336192,5002,9623,0272,4933,3553,6283,3603,36011,08513,26619,10129,13337,47833,20230,386

NY00000000003793,39818,87723,19927,27229,01930,61033,699

MT214469781922102862742763554445045466468078919319291,206

TN000002133514745815797045879641,3993,0213,2933,8234,3154,311

Texas Waiver GrowthU.S. Waiver Growth

From Figure 3-2, page 77

Number of People Living in ICFs/MR by Year

ICF/MR ResidentsState-Operated FacilitiesNonstate-OperatedGrand Total

1-15TotalYear1-1516+Total1-1516+Total

1710773569249892854135411958133121977106166

780078113083Est.

790079120000Est.

800080126917Est.

810081133834Est.

9985821627107081108708835823686320441982140752345866917.26918

830083141472Est.

840084142192Est.

850085142912Est.

860086143632Est.YearStateStateStateNonstateNonstateNonstate Total

23528872874884249129820654323985305219871443503598719.67181 to 15 Residents16+ ResidentsTotal1-15 Residents16+ Residents1-15 Total

880088144732197735692,49892,8541,35411,95813,3121,710

89008914511419821,627107,081108,7088,35823,68632,0449,985

90009014549619872,87488,42491,29820,65432,39853,05223,528

91009114587819926,36671,27977,64534,90833,70768,61541,274

4127492636671279776453490833707686151992146260191038238219971,26454,63654,63643,88028,18172,06145,144

93009314221120011,19745,24846,44541,04826,41467,46242,245

940094138162

950095134113

960096130064

45144971264546365463643880281817206197126015

980098121966

4263199115348502496554147826784682621999117917-28343-4049-4049

00

422450111974524846445410482641467462

Number of Americans Living in ICFs/MRNumber of Americans in Waiver Settings

New YorkCalifornia Waiver Recipients Over the Years

State198219831984198519861987Year198919901991199219931994199519961997199819992000

LA000000# People00569391,1341,5431,9262,1002,0482,4072,9733,629

Louisiana Waiver History

82838485868788899091929394959697989900

TN$1,824$5,832$6,412$7,909$11,390$14,431$10,134$16,031$23,777$71,431$72,739$96,593$135,111$159,937

TN000002133514745815797045879641,3993,0213,2933,8234,3154,311

$8,563$16,617$13,527$13,613$19,672$20,499$17,264$16,630$16,996$23,645$22,089$25,266$31,312$37,100

Large Public1460001390001320001260001200001150001100001060001030001000009700094000910008800083000770007100067000630005700052000500004900048000460004500043000

Waiver #s777879808182838485868788899091929394959697989900010203

U.S. Total000001381560417972226901718022689286893507739838512716242986604122075149185190230221909239021261830291003327713350,000370000

ICF #s171099852352841274451444263142245

Estimates interpolated17103365502066758330998512685153851808520785235282707830628341783772841274420484282243596443704514443887.54263142438422454200041700

8275135433549.2774

16552708.6

1655

Trends in Numbers of HCBS Waiver and ICF/MR (Small) Participants

HCB&ICF Trends

0

0

0

0

70

70

412

417

485

973

968

968

1564

2728

3658

4753

5666

6158

US 2002 Lakin

1381

5604

17972

22690

17180

22689

28689

35077

39838

51271

62429

86604

122075

149185

190230

221909

239021

261830

291003

327713

DI&Comm1

106166

113083

120000

126917

133834

140752

141472

142192

142912

143632

144350

144732

145114

145496

145878

146260

142211

138162

134113

130064

126015

121966

117917

DI&Comm2

1381

5604

17972

22690

17180

22689

28689

35077

39838

51271

62429

86604

122075

149185

190230

221909

239021

261830

DI MR&MH(C)

0

433

619

2500

2962

3027

2493

3355

3628

3360

3360

11085

13266

19101

29133

37478

33202

30386

DI#&$NeedsWork

0

0

0

0

0

0

0

0

0

0

379

3398

18877

23199

27272

29019

30610

33699

Recent DI 52-04

0

0

0

0

0

0

0

25

160

353

359

359

556

848

1619

2332

2400

2847

3400

4000

Georgia Waiver Growth

150 years data

0

0

56

939

1134

1543

1926

2100

2048

2407

2973

3629

# People

150 # people

21

44

69

78

192

210

286

274

276

355

444

504

546

646

807

891

931

929

1206

Montana HCBS Waiver Participants

#Inst1850-1969

0

0

0

0

0

213

351

474

581

579

704

587

964

1399

3021

3293

3823

4315

4311

Tennessee HCBS Waiver Growth

# Inst's1850-2004

1381

5604

17972

22690

17180

22689

28689

35077

39838

51271

62429

86604

122075

149185

190230

221909

239021

261830

291003

327713

TX ICF & Inst

1710

78

79

80

81

9985

83

84

85

86

23528

88

89

90

91

41274

93

94

95

96

45144

98

42631

00

42245

PA&CT OutcmDat

13819985

560412685

1797215385

2269018085

1718020785

2268923528

2868927078

3507730628

3983834178

5127137728

6242941274

8660442048

12207542822

14918543596

19023044370

22190945144

23902143887.5

26183042631

29100342438

32771342245

Waiver

ICF/MR

PA DI Graph

13819985

560412685

1797215385

2269018085

1718020785

2268923528

2868927078

3507730628

3983834178

5127137728

6242941274

8660442048

12207542822

14918543596

19023044370

22190945144

23902143887.5

26183042631

29100342438

32771342245

HCBS Waiver

ICF/MR (1-15)

PA DI $

1710

3365

5020

6675

8330

9985

12685

15385

18085

20785

23528

27078

30628

34178

37728

41274

42048

42822

43596

44370

45144

43887.5

42631

42438

42245

42000

41700

Number of Participants

ICF/MR (Small) Program, 1977-2003

PLS AB

0

0

0

0

0

1381

5604

17972

22690

17180

22689

28689

35077

39838

51271

62429

86604

122075

149185

190230

221909

239021

261830

291003

327713

350000

370000

Number of Participants

Waiver Participants (DD), 1977-2003

PLS CB

146000

139000

132000

126000

120000

115000

110000

106000

103000

100000

97000

94000

91000

88000

83000

77000

71000

67000

63000

57000

52000

50000

49000

48000

46000

45000

43000

Number of Residents

Large Public ICFs/MR, 1977-2003

FamSatPC79

From Lakin's book 2002

Prouty, R.W., Smith, G., & Lakin, K.C. (Eds., 2002), Residential services for persons with developmental disabilities: Status and trends through 2001. Minneapolis: University of Minnesota, Research and Training Center on Community Living, Institute on

Put US curve in here to compare pattern

US

Year1 to 67 to 151 to 1516+TotalUtil. Rate per 100KState Inst. PopnPer Diem of State Insts0-21 Year Olds as % State Inst.People With ID/DD in ICFs/MRPeople With ID/DD in HCBSPeople With ID/DD in Nursing Homes

US7720,40020,02440,424207,356247,780115154,6384436%106,1660

79

78

80

81

US8233,18830,51563,703180,146243,849105122,5709022%140,6821,381

83

84

85

86

US8769,93348,637118,570137,103255,67310595,02214913%144,35022,689

88

US8988,28951,137139,426132,619272,04511087,07118411%139,09235,07737,143

90

US91108,47953,475161,954125,340287,29411478,3072069%146,65751,32739,208

92

US93126,24554,990181,235110,330291,56511470,7602230%148,72986,60439,501

US94144,80657,188201,994107,191309,18512166,2352316%142,118121,57537,955

US95161,88751,287213,17499,339312,51311962,4992350%134,855149,34233,943

US96172,54056,389228,92995,343324,56712258,3202525%129,449190,23030,591

US97194,96853,914248,88293,362342,24412655,7412700%126,697221,90924,958

US98202,26653,942256,20887,605348,26412952,4562855%124,248239,02124,144

US99225,31853,136278,45482,718361,17213250,0342950%117,917261,93025,533

US00236,32552,818289,14382,582374,59513347,3293124%116,441291,00332,195

US01256,21654,349310,56577,180387,74513645,9423330%113,907327,71335,155

US02264,24153,757317,99874,742392,74013643,3043455%110,572378,56634,820

03

04

FamSatPC79

154638

79

78

80

81

122570

83

84

85

86

95022

88

87071

90

78307

92

70760

66235

62499

58320

55741

52456

50034

47329

45942

43304

PLSFamPrePost

YEARINSTCOMMCOST

52125012510001.0

53

541300130

55

56135013514001.4

57

581480148

59

60164016418681.9

61

621730173

63

64180018022502.3

65

661920192

67

68194119530503.1

69

701872189

71

72181618764006.4

73

7416612178

75

76154201741500015.0

77

7813928167

79

80126381642494424.9

81

8211549164

83

84106621684082240.8

85

8610075175

87

8894901845722157.2

89

9088991876200062.0

91

92761101866800068.0

93

94681231917500075.0

956313519884000est.

965815020886000est.

975416521988000est.

9850185

9948205

0046220

0145235

0243255

0343275

04

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

YearMental RetardationMental Health198024944

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

5075

4974

20004873

4673

4573

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 Institutional PopulationsCosts Per Day Per PersonBraddock Data:

YearPeople

773058779877124

7828877811678143

7929327912079147

8029658013280165

8128608114681180

8228668215882176

8328028317683173

8426908417184185

8525778517185207

8624308619186227

8723428721787229

8821578823688225

8919438927789249

9017279027890249

9116269134191254

9215459234092239

931426-1199329793238

941333-939434894260

951273-609535295282

961218-559638496297

971142Est97412Est97310

981073Est98442Est98323

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

521250

53

541300

55

561350

57

581480

59

601640

61

621730

63

641800

65

661920

67

681941

69

701872

71

721816

73

7416612

75

7615420

77

7813928

79

8012638

81

8211549

83

8410662

85

8610075

87

889490

89

908899

91

9276110

93

9468123

9563135

9658150

9754165

9850185

9948205

0046220

0145235

0243255

0343275

&A

Page &P

PLSFamPrePost

125510

129520

133531

137542

141555

145559

149554

153549

157544

161538

164532

167527

173516

177505

180490

187475

192452

193426

193399

189370

186338

184308

181275

173249

166216

161193

154178

146163

139150

132141

126133

120125

115118

110111

106105

103100

10095

9790

9487

9185

8883

8382

7781

7180

6779

6378

5777

5276

5075

4974

4873

Mental Retardation

Mental Health

PLS T1 Fam

521250

53

541300

55

561350

57

581480

59

601640

61

621730

63

641800

65

661920

67

681941

69

701872

71

721816

73

7416612

75

7615420

77

7813928

79

8012638

81

8211549

83

8410662

85

8610075

87

889490

89

908899

91

9276110

93

9468123

9563135

9658150

9754165

9850185

9948205

0046220

0145235

0243255

0343275

PLS T1 Fam

1250

5353

1300

5555

1350

5757

1480

5959

1640

6161

1730

6363

1800

6565

1920

6767

1941

6969

1872

7171

1816

7373

16612

7575

15420

7777

13928

7979

12638

8181

11549

8383

10662

8585

10075

8787

9490

8989

8899

9191

76110

9393

68123

63135

58150

54165

50185

48205

46220

45235

43255

43275

a

PLS FamSat91

125510

129520

133531

137542

141555

145559

149554

153549

157544

161538

164532

167527

173516

177505

180490

187475

192452

193426

193399

189370

186338

184308

181275

173249

166216

161193

154178

146163

139150

132141

126133

120125

115118

110111

106105

103100

10095

9790

9487

9185

8883

8382

7781

7180

6779

6378

5777

5476

5276

5176

4976

MR

MH

Year

1000s of People

Deinstitutionalization in the United States:Mental Retardation vs. Mental Health, 1950-2003

PLS FHappy91

YEAR# PeopleCOMMCOST

52125012510001.0

53128

541300130

55133

56135013514001.4

57142

581480148

59156

60164016418681.9

61169

621730173

63177

64180018022502.3

65186

661920192

67193

68194119530503.1

69191

701872189

71184

72181618764006.4

73174

7416612178

75160

76154201741500015.0

77147

7813928167

79133

80126381642494424.9

81121

8211549164

83111

84106621684082240.8

85103

8610075175

8797

8894901845722157.2

8991

9088991876200062.0

9182

92761101866800068.0

9372

94681231917500075.0

956313519884000est.

965815020886000est.

975416521988000est.

9852

9950

0048

0146

0244

0342

0440

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

955445544595282Est95282

964823482396297Est96297

974200420097310Est97310Est19704635

984100410098323Est

9939343934

0038803880

0138003800

0237503750197511000

033533

California Institutional Population

The figures from 1995 onward are from DDS website 10/15/03

779,764

789,480

799,165

808,828

818,557

828,145

837,699

847,458

857,230

866,958

876,804

886,772

896,738

906,722

916,720

926,683

936,412

946,048

955,469

964,815

974,299

984,032

993,930

003,873

013,782

023,735

033,596

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

184308Costs Per Day Per Person

18127577119

17324978127

16621679129

197516119380136

15417881137

14616382134

13915083128

13214184127

198012613385134

12012586150

11511887164

11011188185

10610589207

198510310090224

1009591229

979092235

948793234

918594244

1990888395268

838296272

778197282

718098292

6779

19956378

5777

5276Costs Per Day Per Person

4975

46747798

2000457478116

447379120

437380132

437381146

2004437282158

83176

84171

Kansas Institutional Populations85171

77145686191

78140687217

79137988236

80132789277

81130590278

82131691341

83132792340

84136093297

85134594348

86129495352

87122396384

88114997412

891052673898442

901017672299472

9110156720

929436629Costs Per Year Per Person

93897YearCT

948367735770

957417842340

966967943800

97596Est8048180Est

98496Est8153290Est

8257670

8364240

8462415

Connecticut Public Institutional Populations8562415

8669715

7730588779205

7828878886140

79293289101105

80296590101470

81286091124465

82286692124100

83280293108405

84269094127020

85257795128480

86243096140160

87234297150198

88215798161330

89194399172189

901727

911626

921545

931426-119

941333-93

951273-60

961218-55

971142EstEst

981073EstEst

Est

Costs Per Day Per Person

YearCost/Day

77151Nation

7817217000

7918319000

8015822000

8116726000

8219330000

8319134000

8418638000

8519340822

8617644000

8718648500

8819153000

8921457221

9021459000

9121562000

9222865000

9322768000

9422972000

9525075000

9626184000

9727686000

9829188000Est

9930691000Est

94000Est

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

Pennsylvania Public Institutional Populations

YearPeople2002 data

7791899870

7881968196

7977787778

8080548054

8178127812

8268437124

8367796779

8463626362

8558075807

8656005600

8749625127

8844264426

8941514082

9040434043

9139253878

9238073807

9337393671

943616356321

953460339211

963272316415

9730003298Est

9826502909Est

9923502622Est

001969

011716

021666

"03

"04

"05

&A

Page &P

PLS FHappy91

9764

9480

9165

8828

8557

8145

7699

7458

7230

6958

6804

6772

6738

6722

6720

6683

6412

6048

5469

4815

4299

4032

3930

3873

3782

3735

3596

California DC Population, 1977-2003

PLS Costs

9870

8196

7778

8054

7812

7124

6779

6362

5807

5600

5127

4426

4082

4043

3878

3807

3671

3563

3392

3164

3298

2909

2622

1969

1716

1666

CT Fam PP

YEAR# People

52125

53128

54130

55133

56135

57142

58148

59156

60164

61169

62173

63177

64180

65186

66192

67193

68194

69191

70187

71184

72181

73174

74166

75160

76154

77147

78139

79133

80126

81121

82115

83111

84106

85103

86100

8797

8894

8991

9088

9182

9276

9372

9468

9563

9658

9754

9852

9950

0048

0146

0244

0342

0440

CT Fam PP

125

128

130

133

135

142

148

156

164

169

173

177

180

186

192

193

194

191

187

184

181

174

166

160

154

147

139

133

126

121

115

111

106

103

100

97

94

91

88

82

76

72

68

63

58

54

52

50

48

46

44

42

40

# People

YEAR

# People

CTFamSat90

1950125

Entire United States, 1850 to 2005129

YearPeople 1000sNumber 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

2000482000140.115

2001462001137

2002442005132

200343

200442

200542

CTFamSat90

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

0

Year

1000s of People

CT Cons Sat 90

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

48

46

44

43

42

1000s of People

Movers LMR

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

CT Percent Gain by LMR

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

137

132

# of Institutions

Costs by LMR

Corrected 1/04, based on Lakin 2002

Texas Institutional PopulationsHCBSCosts Per Day Per Person

Year# PeopleYearPer DiemYearUSA

7712,11410,84307710077146

1,7947811,50010,56207810278139

5987910,90010,29407910579132

8010,32010,15208010180126

8110,5009,91808110381120

8210,7619,81108211382115

1,1238310,3809,76008311283110

374.33333333338410,0009,71808412284106

859,6389,62508512185103

868,7879,013708612586100

877,9368,12670871278797

Estimates887,9357,662412881488894

897,9337,447417891708991

907,4077,290485901769088

916,8807,094973911789183

926,8087,041968921759277

936,7366,580968931919371

946,1246,2421564941939467

955,8555,8792728951949563

965,7355,5173658961819657

Percent 98 of 77975,6525,476475397191Percent Increase9752Percent 98 of 77

50.1%985,4365,434566698200100.0%984933.6%

995,2945,294

005,470

015,372

025,188

Percent decrease035,003Percent decrease

5,40997

49.9%66.4%

Thus, TX lags behind the nation in decreasing institutional populations

There were 15 facilities, 2 have closed in the past 15 years.

MR/DDTotal

Facility NameOpenedClosedPop'n 98Pop'n 98Per DiemMR/DD Pop'n 2003

Abilene State School1957601601158529

Austin State School1917446446228438

Brenham1974478482131392

Corpus Christi1970386386163366

Denton1960671671163653

El Paso1973121121139145

Lubbock1969378378188346

Lufkin1962456456147426

Mexia1946574574178516

Richmond196863963916180

Rio Grande19739090177524

San Angelo1969316316197296

San Antonio1978300300207292

5003

545617262,808

200323083,950

Fort Worth19761996000

Travis19611996000

ICF/MR$Fed %Fed Pay# Res$/ResState Pop'nICF/MR $ / Res% of all Fed ICF

Texas646,617,509.000.62402,842,708.0012,832.0050,391.0219,760,00032.727.19%

USA9,833,092,080.000.575,605,886,402.00124,248.0079,140.85270,810,00036.31

Percentage distribution of money in TX

PercentPercent

State Institution ICF/MR51.8CongregateTotal Cong59.8

Private ICF/MR

HistoryFamily and local responsibilityState aid institutionsMedical model/dominationKennedy CMH Act and concernScandals in institutions (Willowbrook, etc.)Federal aid Medicaid to institutions1971

History, 1970sBehaviorismDeinstitutionalization (graph)Public education PL 94-142, now IDEAProfessional model/domination Interdisciplinary the PsGrowth of community provider system

History, 1980s and 1990sMedicaid use by states in communities (!)1981 the ICF/MR (Small) program (little institutions 4 to 15) interpretive guidelines1981Waiver program created Katie Beckett & ReaganEventually brought huge $ - but set the framework for decades as a medically-oriented provider payment systemEmployment supported, competitive, and self (sputtered and sputtering)Person-centered planning Mount, OBrien, then othersTruly revolutionaryConsolidation and growth of community providersScandals in communities in the 1990sCA (mortality), WA, IN, PA, and 10 othersGrowth of interest in quality systems & approaches, but financial stagnation trying to do better with less

So Now We Are Ensnared in MedicaidWas it a good thing?Definitely no other way to get such increases in $ year after yearAre there drawbacks?Definitely we still struggle with the Medical Model, restricted attention on Health & Safety to the exclusion of a lifeAnd the Provider Payment nature of Medicaid makes self-determination, self-direction, consumer-direction, and all such shifts of power, VERY difficult.A few examples of courageous actions within Medicaid:

SeanJust graduated from high schoolTerrible car accident, fell into a comaSeans state did not have any nursing homes for head injuryProfessionals sent Sean to another states nursing home

Sean Lived in a Nursing HomeFor several years100 miles from his parentsHe didnt get much individual attentionAnd he didnt improveHis care was costing $120,000 per yearNo one was happy

Seans Parents Asked:Isnt there another way?How much is all this costing government?$120,000? Really?If we had control of that money, we would do things very differently.

Local Authorities Asked:Oh? What would you do differently?That nursing home is the only one around that specializes in head injury.What could you non-professionals do for Sean?

Seans Parents Said:We would adapt a house for himWe would hire his high school friends to work as his attendantsWe would hire nurses part time to oversee his careAnd we would have him close to us

Local Government Thought This Just Might Make SenseCourageous local leaders went to state and federal officialsExplained the situationAsked permission to experiment with putting family in charge of how the money was spentCourageous state and federal officials agreed to look the other way while regulations were being bent

Sean Came HomeGovernment dollars were used to buy a houseAnd to make it accessibleAnd to put in special bathroom and a liftFriends were hired as attendantsThey took Sean into town on outingsFamily visited frequently, reading to Sean, talking in his presence, and touching him

Outcomes:Total dollars spent, even with the down payment on the new home and the payments on the mortgage, went down below $70,000 (Even in the first year)Much lower nowIn 1996, Sean began to open his eyes and focusIn 1997, he began to speakMost of us think that would not have happened in the nursing home --- EVER

New Idea / Theory:When families decide how to spend the public dollarsThey tend to spend more precisely according to needsAnd perhaps more wisely than professionals

Was This Easy To Do?No!Bringing Sean out of a fully accredited Nursing Home?Into what, is the new facility a certified Medicaid Provider?Buying house?Renovating privately owned home?Hiring non-professionals?Letting Seans family and friends decide how to use public funds?

Mike Lived in a Group HomeWith five other menHe didnt like itHe had behaviorsSometimes extremeHe yearned for more family-like situationPCP revealed a sisterShe wanted more contact, too

Following Mikes MoneyFrom state, plus Fed Waiver, residential funds were $50,000From state, day program funds were $17,000From state and local sources, transportation added another $3,000Several other sources made another $2,000Mike was at a total of about $72,000

Create an Individual BudgetAnd use state of the art individual planningPerson-centered planningEssential lifestyle planningOr any variation thereof(Michigan law requires PCP)Find out what Mike really wants, what kind of life makes sense to himHe wanted to be with family more than anythingCareful, considerate contact with his sister

Take the Same Money, And ...Spend it differentlyMikes twin, Michelle, wanted to support her brotherBut she had to work to make money and have a home and benefitsWith Mikes money, Michelle was hiredPublic dollars were then spent very differently!

Mike Eventually Moved InWith Michelle and her husbandWhen Michelle went back to school and moved across the stateMike left his job and went with herFound another jobIs doing very wellNo more behaviorsTotal cost MUCH less

Was This Easy To Do?No!Leaving the group home?Paying a relative?Not certified as a Medicaid provider?Moving counties and keeping same benefits?Extremely difficult to do, and tough to maintain constant challenges, questions

Carls Medicaid Cash CowWanted to work with animalsFarm internshipBought Carls own calf for $200 with Medicaid dollarsHe raised itThe cow was worth over $800But two problems arose:1) Is everybody going to Medicaid jail?2) Are there Capital Gains on Medicaid profits???

$200 = A LIFE

MEDICAID CASH COW

$$$$$$$$$$

MOO-NEY

MOO-NEY

MOO-NEY

EMBED Word.Picture.8

MACROW Networks of NE

Slide #7

_938695691.doc

Post Self-DeterminationCash & Counseling experiments in aging, now expandingSelf-direction movement in mental health and the recovery modelSweeping changes in Waiver approaches; Independence Plus, Freedom Initiatives, experimental 1115 WaiversMedicaid reform efforts led by ADAPTAdvocate to end the Institutional Bias in WaiversRidiculous structure of Waivers: One has to need and be eligible for institutional care before being allowed to be supported in community

Abstract: Providers Must Keep Informed and be Poised to Switch Business ModelsCross-group alliance (aging, DD, and MH and maybe a generic health care SD movement too)Watch for any opportunity to partner with, or merge with, or start a subsidiary on, in-home supports for eldersLook at the Comfort Keepers model - brandingMedicaid changes are urgently needed National advocacy participation via ANCOROrganized labor roles and vast changes recentlyIHSS model extremely important to studyWatch for the Money Follows the Person grants!

Money Follows the Person GrantsFunds Available for the DemonstrationThe following funds are made available in each respective fiscal year:FY 2007 $250,000,000 (Available January 1, 2007)FY 2008 $300,000,000FY 2009 $350,000,000FY 2010 $400,000,000FY 2011 $450,000,000

Future Providers and Funding FlowWill we be able to create new accounting systems that will suit the individual budgeting future?Without becoming hopelessly complicated?Looks like a YesVermont has shifted to individual budgets statewideCalifornia always had it that way, sort of without knowing it or realizing its unusual, via the Lanterman ActCompanies and providers are now springing up all over the states that want to do business in the new wayIts worth remembering that self-determination began, not with advocates, self-advocates, or bureaucrats, but with providers who wanted to stop overly dominating the people they supported.

SummaryImprovements in Americas developmental disabilities support systems are inextricably intertwined with Medicaid(Also called Medical Assistance, from Title XIX of the Social Security Act)To understand why its so hard to move forward with self-determination and related models, its essential to understand Medicaid and Waivers and how state rules and regulations were shaped by the constant struggle for FFP getting Federal $$$.

SummarySo, its important to learn about Medicaid HCBS Waivers, which is easy on the NetOnce understood to some degree, the next step is to review the latest Waiver models Independence Plus Find out whats going on in OregonFigure out how to be part of these efforts

The End, Thank You

Comments?Questions?