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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?