TEXAS’ “STATE-SUPPORTED LIVING CENTERS”: PAST, PRESENT, FUTURE David Braddock, Ph.D.,...

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TEXAS’ “STATE-SUPPORTED LIVING CENTERS”: PAST, PRESENT, FUTURE

David Braddock, Ph.D., Associate Vice President, University of Colorado

Professor and Executive Director, Coleman Institute for Cognitive Disabilities

Federal Reserve Bank of Dallas

Austin, TXSeptember 14, 2011

Presentation © 2011 David Braddock

2

PRESENTATION

I. FROM INSTITUTIONS TO COMMUNITY AND FAMILY SUPPORTS

II. THE IMPACT OF ECONOMIC UNCERTAINTIES

III. DEVELOPMENTS IN TECHNOLOGY APPLICATIONS IN DEVELOPMENTAL DISABILITIES

3

FIRST MENTAL DISABILITY INSTITUTIONS

BETHLEHEM, LONDON, ENGLAND (1403)

VALENCIA, SPAIN (1409)

ZARAGOZA (1425)

SEVILLE (1436)

VALLADOLID (1436)

PALMA MAJORCA (1456)

TOLEDO (1480)

GRANADA (1527)

SAN HIPOLITO (1566, Mexico City)

I.THE INSTITUTIONAL ERA: 1403-1963

4

ABILENE EPILEPTIC COLONY,ABILENE, TEXAS (1899)

D. Braddock, University of Colorado, 2007.

5

AUSTIN STATE SCHOOL (1917)

D. Braddock, University of Colorado, 2006.

6

NEW YORK STATE MENTAL RETARDATION INSTITUTION, CIRCA 1967

Source: Braddock, D., University of Colorado, 2008.

7

DECLINING NUMBER OF INSTITUTIONAL RESIDENTSWITH I/DD AND MENTAL ILLNESS IN THE U.S. (IN 1,000s)

1844 1858 1872 1886 1900 1914 1928 1942 1956 1970 1984 19980

100

200

300

400

500

600

700

Da

ily

Ce

ns

us

(T

ho

us

an

ds

)

559

195

Mental IllnessIntellectual/Developmental Disabilities

Sources: Mental Illness Data -- U.S. Bureau of the Census, cited in Hamilton (1944); Center For Mental Health Services,U. S. Department of Health and Human Services, 1996, 1999; NASMHPD, 2002, 2005 2007, 2008, 2009, 2010;SAMHSA, 2003, 2005, 2006,

Intellectual/Developmental Disabilities Data -- State of the States, Coleman Institute for Cognitive Disabilities and Departmentof Psychiatry, University of Colorado, 2011.

(1955)

(1967)

2009

48,344

33,732

8

II .TO COMMUNITY: KENNEDY & 88-164

9

TEXAS STATE PLAN (1966)

Source: Braddock, D., University of Colorado, 2008.

10

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

DECLINING I/DD STATE SCHOOLUTILIZATION RATES: 1977-2009

77 78 79 80 81 82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09Fiscal Year

0

20

40

60

80

100In

sti

tuti

on

al

Re

sid

en

tis

pe

r 1

00

,00

0 P

op

ula

tio

n

83

60

40

29

23 22 2220

69

45

31

23

16 14 13 11

Texas

U.S.

11

TEXAS GENERAL POPULATIONINCREASES 125% FROM 1970-2010

Source: U.S. Census Bureau (2011).

7071

7273

7475

7677

7879

8081

8283

8485

8687

8889

9091

9293

9495

9697

9899

0001

0203

0405

0607

0809

10

Fiscal Year

0

5

10

15

20

25

30

Ge

ne

ral

Po

pu

lati

on

(M

illi

on

s)

11.1

14.1

17.0

20.6

25.0

12

• Structure and Financingof Intellectual/Developmental Disability (I/DD) Services

II.1 TRENDS IN I/DD SERVICES IN TEXAS &THE U.S.

13

STATE-OPERATED I/DD INSTITUTIONS IN TX

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

1 Denton State School 620 2 Abilene State School 516 3 Mexia State School 539 4 Richmond State School 492 5 Lufkin State School 433 6 Austin State School 441 7 Brenham State School 395 8 Corpus Christi State School 364 9 State-operated ICF/ID 10

10 San Angelo State School 307 11 San Antonio State School 295 12 Lubbock State School 271 13 El Paso State Center 143 14 Rio Grande State Center 73

TOTAL 4,899

14

LARGEST CENSUS STATES, PER CAPITA*

*Per 100,000 of the state general population

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

1 Mississippi 46.5

2 Arkansas 37.5

3 New Jersey 31.3

4 Louisiana 26.1

5 Connecticut 20.9

6 Texas 19.9

7 North Dakota 19.1

8 North Carolina 19.1

9 South Dakota 18.1

10 Illinois 17.9

CENSUS PER CAPITA*, 2009

15

INSTITUTIONAL PER DIEM RATES IN TEXASAND THE U.S.: 2009

TEXAS: $317*LOUISIANA $539*NEW MEXICO $0*U.S.: $524Highest State (New York): $1,237Lowest State (Arkansas): $281

*Texas’ per diem ranked 3rd lowest of the 40 states with institutions, Louisiana’s ranked 19th highest. New Mexico closed it’s last institution (Los Lunas) in 1997.

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

16

STATES WITHOUT STATE-OPERATEDI/DD INSTITUTIONS

1.DISTRICT OF COLUMBIA (1991)2.NEW HAMPSHIRE (1991)3.VERMONT (1993)4.RHODE ISLAND (1994)5.ALASKA (1997)6.NEW MEXICO (1997)7.WEST VIRGINIA (1998)8.HAWAII (1999)9.MAINE (1999)10.MICHIGAN (2009)11.OREGON (2009)12.ALABAMA (2012)13.MINNESOTA (2000)*14.INDIANA (2007)*

Source: Braddock, D., State of the States in Developmental Disabilities, 2011. *Denotes ICF/ID units in mental health institutions.

17

CUMULATIVE NUMBER OF COMPLETED/IN PROGRESS CLOSURES OF STATE-OPERATED 16+ INSTITUTIONS, U.S.

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

1969 1970 1975 1980 1985 1990 1995 2000 2005 2012 2013

Year

0

25

50

75

100

125

150

175N

um

ber

of

Clo

sure

s

1 2 7 10

28

48

80

117

136

153 154

18

WHO’S NEXT?

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

1 Nevada 482 Montana 643 Delaware 764 Wyoming 835 Idaho 966 Colorado 1037 North Dakota 1238 Arizona 1269 South Dakota 146

10 Utah 236

SMALLEST INSTITUTIONAL CENSUS, 2009

19

WHO’S NOT?

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

1 Texas 4,8992 New Jersey 2,7034 Illinois 2,3083 California 2,1945 North Carolina 1,6386 New York 1,4927 Ohio 1,4238 Mississippi 1,3719 Pennsylvania 1,253

10 Virginia 1,184

LARGEST CENSUS, 2009

20

• Justice Department in 2008 found poor care and little protection from harm for Austin Center residents.

• Austin Center now out of compliance with 153 of 171 provisions that were outlined in a June 2009 agreement.

• Some improvements: increased staff pay, decreased staff turnover, and new policies to protect residents.

• However, half of the 350 Center residents have urgent dental needs, patient restraint records are incomplete, and there are continued employee problems.

• Between November 2010 and May 2011 twelve staff were fired for abuse or neglect of residents.

• Disability activists say the State must close state centers, move residents to community settings including group home.

A. Ball, American-Statesman, Austin, August 7, 2011.

U.S. DEPARTMENT OF JUSTICEREVIEWS TEXAS I/DD INSTITUTIONS

21

Utilization Rate: 194 per 100,000

INDIVIDUALS WITH I/DD IN OUT-OF-HOME PLACEMENTS IN THE U.S., 2009

33%

10%

6%

4%5%

Total: 593,483 Persons

7-15 Persons 58,136

Nursing facilities 16+32,469

United States

Group, foster, host homes, apartments

196,211 Persons

Supported Living246,822 Persons

6/Fewer Persons75%

State inst.16+33,732

Private 16+26,113

16+ Persons 16%

42%

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

22

Utilization Rate: 182 per 100,000

(32nd)

INDIVIDUALS WITH I/DD IN OUT-OF-HOME PLACEMENTS 33 YEARS LATER: 2009

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

11%

31%

36%

3%

11%

6%

Total: 44,782

<8 Persons (78%)Private ICF/MR 14+ - 1,374

State Schools - 4,899

Nursing Facilities - 2,880

TEXAS

9-13 Persons - 732 (2%)

ICF/MR Group Homes - 5,029

Supported Living - 16,194

Other Group Homes - 13,674

14+ Persons (20%)

23

I/DD REVENUE SOURCESIN 2009: UNITED STATES

3%

39%57%STATE

$20.91 BillionFEDERAL

$30.58 Billion

6%

25%

15%

52%

Total: $53.21 Billion

Title XX/SSBG (1%)

HCBS Waiver

Waiver SSI/ADC

ICF/MR

Other MedicaidOther Federal (1%)

LOCAL $1.72 Billion

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

24

I/DD REVENUE SOURCESIN 2009: TEXAS

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

32%

66%

STATE $593.7 Million

FEDERAL$1,229.7 Million

47%

13%

38%

Total: $1.86 Billion

HCBS Waiver

Waiver SSI/ADC

ICF/MR

Other Medicaid (1%)Other Federal Funds (1%)

LOCAL $32.8 Million (2%)

25

STATES VARY GREATLY IN THE AMOUNT OF I/DD MEDICAID FUNDING

NY Times, August 2, 2011

26

UNITED STATES

FEDERAL HCBS WAIVER SPENDING DOUBLES ICF/ID SPENDING IN 2009

73 75 77 79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09

Fiscal Year

$0

$5

$10

$15

$20

Bill

ion

s o

f 20

09 D

olla

rs

$9.4$8.5

$7.9

$7.7$10.1

$11.9

$15.9

ICF/ID

HCBS Waiver

Intercept(2001)

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

27

TEXAS

BUT TEXAS’ WAIVER SPENDING IS STILL BELOW ICF/ID SPENDING

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

71 73 75 77 79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09Fiscal Year

$0

$100

$200

$300

$400

$500

$600

$700

$800

Mil

lio

ns

of

20

09

Do

lla

rs

$202

$338

$669$702

$584

$46

$228

$328

$472

ICF/ID

HCBS Waiver

28

TEXAS

Source: Braddock, D., State of the States in Developmental Disabilities, 2009. *Includes Home and Community-Based Services (HCS) and Community Living Assistance and Support Services (CLASS) Waivers.

HCBS WAIVER PARTICIPANT GROWTH IS INCREASING IN TEXAS: 1982-2009*

82 83 84 85 86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09Fiscal Year

0

5,000

10,000

15,000

20,000

25,000

Nu

mb

er o

f P

arti

cip

ants

0 0 68 288 4201,335

2,3983,164

4,6015,140

7,1237,955

9,11110,204

12,447

14,455

16,433

18,619

20,045

29

• Case management; transition assistance;• Adaptive aids; minor home modifications;• Medical supplies; nursing;• Adult foster care; residential care and/or assistance;• Personal Emergency Response System (PERS)• OT, PT, Speech Pathology, Audiology; specialized therapies• Personal assistance;• Home delivered meals; dietary• Respite care;• Supported employment; day habilitation;• Dental, psychological services.

II.2: TEXAS HCBS WAIVER SERVICES

30

TEXAS HCBS WAIVER SERVICES (Cont.)

AMONG THE HCBS WAIVER SERVICES NOT PROVIDED:

• Assistive technology

• Community integration training

• Transportation

• Independent living skills training.

• Communication devices

• Nutritional counseling

• Private duty nursing

31

• Texas has two major HCBS Waivers for which persons with I/DD await services:

1. Home and Community Services (HCS) Waiver: 51,856 persons on “interest list”

2. Community Living Assistance and Support Services (CLASS) Waiver:36,770 persons on “interest list”

Source: Texas Department of Aging and Disability Services (DADS) interest list.*Duplicated Count. In March 2009, the HCS and CLASS “interest lists” were 41,011 and 25,289, respectively.

TEXAS “INTEREST LIST” FOR MEDICAID WAIVER SERVICES AS OF MAY 2011*

32

TEXAS RANKED 49th IN WAIVER UTILIZATION IN 2009, NEW MEXICO 8TH AND LOUISIANA 16TH*

* Federal-State HCBS Waiver spendingper citizen of the general population.

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

1 New York $247 18 South Dakota $113 35 Oklahoma $632 Maine $230 19 Wisconsin $106 36 New Jersey $573 Rhode Island $214 20 Kansas $104 37 Virginia $564 Minnesota $211 21 Delaware $100 38 Alabama $545 Vermont $205 22 Nebraska $93 39 California $526 District of Columbia$203 23 Maryland $91 40 North Carolina $517 Wyoming $178 24 Tennessee $90 41 South Carolina $518 New Mexico $139 25 Iowa $89 42 Florida $479 Connecticut $133 26 Massachusetts $88 43 Utah $47

10 Pennsylvania $131 27 Hawaii $82 44 Arkansas $4511 North Dakota $131 28 Michigan $80 45 Idaho $4412 West Virginia $127 29 Ohio $79 46 Kentucky $4213 New Hampshire $124 30 Washington $76 47 Illinois $3814 Alaska $124 31 Montana $72 48 Georgia $3415 Oregon $121 32 Indiana $72 49 Texas $2816 Louisiana $119 33 Missouri $66 50 Nevada $2717 Arizona $115 34 Colorado $63 51 Mississippi $13

UNITED STATES $82

33

II.3 MEASURING COMMITMENT TO I/DD SERVICES:FISCAL EFFORT & OTHER METRICS

Fiscal effort is a ratio that can be utilized to rank states according to the proportion of their total statewide personal income devoted to the financing of I/DD services.

Fiscal effort is defined as a state’s spending for I/DD services per $1,000 of total statewide personal income.

34

FISCAL EFFORT FOR I/DD SERVICES IN TEXAS LAGS U.S. AVERAGE FOR 33 YEARS, DECLINED 2003-09

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

7778

7980

8182

8384

8586

8788

8990

9192

9394

9596

9798

9900

0102

0304

0506

0708

09

Fiscal Year

$0.00

$1.00

$2.00

$3.00

$4.00

$5.00D

oll

ars

pe

r $

1,0

00

of

Pe

rso

na

l In

co

me

$3.40

$4.02$4.25 $4.34

$2.30

$2.28

$2.03 $1.93

(Texas ranked 50TH in 2009)

U.S.

TEXAS

35

LEADERS AND LAGGARDS INI/DD FISCAL EFFORT*: 2009

*Fiscal effort is I/DD spending per $1,000 of statewide aggregate personal income. (LOUISIANA 6TH, NEW MEXICO 15TH AND TEXAS 50TH)

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

1 New York $10.10 18 Wyoming $4.90 35 South Carolina $3.492 Maine $8.32 19 Arkansas $4.75 36 Arizona $3.493 Connecticut $7.69 20 Massachusetts $4.72 37 Missouri $3.454 Minnesota $7.54 21 Idaho $4.69 38 Washington $3.425 North Dakota $7.28 22 South Dakota $4.59 39 Oklahoma $3.396 Louisiana $7.13 23 Mississippi $4.26 40 Illinois $3.137 Ohio $6.84 24 Tennessee $4.17 41 Hawaii $3.118 Iowa $6.50 25 Nebraska $4.16 42 Utah $2.949 Rhode Island $6.31 26 Indiana $4.13 43 Maryland $2.89

10 Vermont $6.21 27 Kansas $4.11 44 Kentucky $2.8711 District of Columbia $5.91 28 North Carolina $4.06 45 Virginia $2.7312 Pennsylvania $5.70 29 Alaska $3.95 46 Alabama $2.2813 West Virginia $5.70 30 California $3.82 47 Colorado $2.2314 Wisconsin $5.46 31 Michigan $3.80 48 Georgia $2.1415 New Mexico $5.34 32 New Hampshire $3.79 49 Florida $2.0916 Oregon $5.18 33 Montana $3.77 50 Texas $1.9317 Delaware $5.00 34 New Jersey $3.62 51 Nevada $1.59

UNITED STATES: $4.34

36

District of Columbia $71,044 26 LOUISIANA $38,4461 Connecticut $56,001 27 Wisconsin $38,4322 Massachusetts $51,552 28 Iowa $38,2813 New Jersey $50,781 29 Maine $37,3004 Maryland $49,025 30 Oregon $37,0955 New York $48,821 31 Nevada $36,9976 Wyoming $47,851 32 Missouri $36,9797 Virginia $44,762 33 Oklahoma $36,4218 Alaska $44,174 34 Ohio $36,3959 New Hampshire $44,084 35 North Carolina $35,638

10 Washington State $43,564 36 Michigan $35,59711 Illinois $43,159 37 Georgia $35,49012 California $43,104 38 Montana $35,31713 Minnesota $42,843 39 Tennessee $35,30714 Colorado $42,802 40 Arizona $34,99915 Rhode Island $42,579 41 Indiana $34,94316 Pennsylvania $41,152 42 Alabama $33,94517 Hawaii $41,021 43 NEW MEXICO $33,83718 North Dakota $40,596 44 Kentucky $33,34819 Vermont $40,283 45 South Carolina $33,16320 Delaware $39,962 46 Arkansas $33,15021 Kansas $39,737 47 West Virginia $32,64122 Nebraska $39,557 48 Utah $32,59523 TEXAS $39,493 49 Idaho $32,25724 Florida $39,272 50 Mississippi $31,186

25 South Dakota $38,865 UNITED STATES $40,5841District of Columbia not ranked by Bureau.

STATES RANKED BY PERSONAL INCOME PER

CAPITA, 20101

Sources: Estimates for 2010 based on 4/1/10 decennial census data (released 12/10); U.S. Bureau of Economic Analysis and Bureau of the Census (2011).

37

III.RECENT TRENDS IN: Family Support, Supported Employment,& Aging Caregivers

1. FAMILY SUPPORT

2. SUPPORTED EMPLOYMENT

3. IMPACT OF AGING CAREGIVERS

38

III.1: FAMILY SUPPORT DEFINED

FAMILY SUPPORT INCLUDES

• Respite

• Family counseling

• Architectural adaptation of the home

• In-home training, education, behavior management

• Sibling support programs, and

• Purchase of specialized equipment

“CASH SUBSIDY FAMILY SUPPORT” INCLUDES:

Payments or vouchers directly to families; families determine what is purchased

39

FAMILIES SUPPORTED IN TEXAS ARE 12% OF TOTAL ESTIMATED I/DD CAREGIVING FAMILIES

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

99 00 01 02 03 04 05 06 07 08 09

FISCAL YEAR

0.0

50.0

100.0

150.0

200.0

250.0

300.0T

HO

US

AN

DS

OF

FA

MIL

IES

5% 5% 9% 12%

201.0220.3

228.4 234.1

Total I/DD Caregiving FamiliesFamilies Supported by State I/DD Agencies

40

FAMILIES SUPPORTED: TEXAS LAGSTHE U.S. AVERAGE

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

State

Families Supported

% of All Caregiving

FamiliesNational

RankNew Mexico 33% 3Louisiana 26% 10UNITED STATES 17%Texas 12% 31

41

“While supported employment has made significant gains since its formal introduction in 1984 (P.L. 98-527), segregated services continue to outpace the growth of supported employment nationally.”

True in 2004 and true today.

(Rusch & Braddock, Research and Practice for Persons with Severe Disabilities, 2004)

III.2: SUPPORTED EMPLOYMENT

42

PER CAPITA* SUPPORTED EMPLOYMENTWORKERS IN LOUISIANA AND TEXAS LAST IN U.S.

National Rank State

Workers per Capita

(General Population)

1 Vermont 146 2 Connecticut 129 3 Iowa 111 4 Oklahoma 93 5 South Dakota 90 6 Maine 87 7 Maryland 82 8 Pennsylvania 75 9 Alaska 71

10 District of Columbia 71 13 New Mexico 63 49 Texas 3 50 Louisiana 2

UNITED STATES 34

*Per 100,000 of General Population

43

III.3: IMPACT OF AGING CAREGIVERS

44

• 1970s: 59.1 years

• 1993: 66.2 years

• U.S. General Population: 70.4 years

• In the future “…those without severe impairment can be expected to have a life span equal to that of the general population.”

LONGEVITY INCREASES FOR PERSONS WITH AN INTELLECTUAL DISABILITY

Source: M. Janicki. (1996). Rehabilitation Research and Training Center on Aging and Mental Retardation, University of Illinois at Chicago.

45

20% OF PERSONS WITH I/DD LIVE AT HOME WITH CAREGIVERS AGED 60 YEARS OR MORE

TEXASAGING CAREGIVERS AGED 60+

46,752

Caregivers Aged 41-59 82,121

Caregivers Aged <41105,224

TOTAL FAMILY CAREGIVERS: 234,097

35%

45%

20%

Source: Braddock et al., Coleman Institute and Department of Psychiatry, University of Colorado, 2011, based on Fujiura (1998).

46

STATES WITH GREATEST AND LEAST PROPORTIONS OF RESIDENTS AGED 65+ YEARS, ‘09

Source: U.S. Bureau of the Census, 2010

0% 5% 10% 15% 20% 25%

PERCENT OF STATE POPULATION AGED 65+

FLORIDA (1st)

WEST VIRGINIA (2nd)

MAINE (3rd)

PENNSYLVANIA (4th)

IOWA (5th)

U.S.

COLORADO (47th)

GEORGIA (48th)

TEXAS (49th)

UTAH (50th)

ALASKA (51st)

17.2%

15.8%

15.6%

15.4%

14.8%

12.9%

10.6%

10.3%

10.2%

9.0%

New Mexico 32nd and Louisiana 38th

47

AGED 65+ YEARS: 2010-2050

AGING POPULATION DOUBLES 2010-40, U.S.

Source: U.S. Bureau of the Census, 2009

2010 2020 2030 2040 2050Year

0

20

40

60

80

100

Am

eric

an

s A

ged

65

+ (

Mill

ion

s)

40

55

71

80

87

48

III.4: ECONOMIC UNCERTAINTYIN THE STATES

49

ONLY THE DISTRICT OF COLUMBIA IS CONFIDENT ABOUT THE U.S. ECONOMY

11-13-16-17-17-19-19-20-20-20-22-24-25-26-26-26-27-27-27-28-28-28-29-29-29-30-30-30-31-31-31-31-31-31-33-33-33-33-33-33-34-34-34-35-35-35-36-37-37-39-44

-45 -40 -35 -30 -25 -20 -15 -10 -5 0 5 10 15

DISTRICT OF COLUMBIANebraska

North DakotaSouth Dakota

MarylandMassachusetts

UtahIowa

MinnesotaVirginiaAlaska

ColoradoWisconsin

TexasCalifornia

HawaiiSouth Carolina

GeorgiaKansas

New YorkIllinois

New HampshireNew Jersey

PennsylvaniaNorth Carolina

WashingtonNew MexicoConnecticut

VermontIndiana

AlabamaMissouriMichigan

OklahomaArizona

MontanaWyomingArkansas

OregonTennessee

Rhode IslandFlorida

OhioDelawareKentucky

NevadaMississippi

LouisianaIdahoMaine

West Virginia

ECONOMIC CONFIDENCE INDEXLeast Pessimistic

Most Pessimistic

Gallup Poll, in C. Rampell, "Why Washington Likes Itself," NY Times, 8/28/11

50

U.S. RANK STATE INDEX

U.S. RANK STATE INDEX

1 North Dakota 4.68 27 Arkansas 0.002 Texas 1.29 28 Michigan -0.033 Oklahoma 1.08 29 Arizona -0.084 Nebraska 0.91 30 Hawaii -0.085 South Dakota 0.75 31 Pennsylvania -0.116 Utah 0.75 32 New Mexico -0.127 Alaska 0.70 33 Rhode Island -0.128 Wyoming 0.69 34 District of Columbia-0.139 Colorado 0.36 35 Connecticut -0.1310 Wisconsin 0.26 36 Tennessee -0.1311 Washington State 0.23 37 New Hampshire -0.1912 Louisiana 0.19 38 South Carolina -0.2413 Illinois 0.18 39 West Virginia -0.2514 Idaho 0.15 40 Florida -0.2915 Oregon 0.14 41 North Carolina -0.3316 Vermont 0.13 42 Mississippi -0.38

17 Virginia 0.08 43 Missouri -0.4118 Montana 0.07 44 Indiana -0.4219 Delaware 0.06 45 Alabama -0.4920 Massachusetts 0.06 46 Georgia -0.5121 Kansas 0.05 47 Maryland -0.5222 Iowa 0.04 48 New York -0.5823 California 0.04 49 Maine -0.7624 Minnesota 0.03 50 Nevada -0.9225 Kentucky 0.03 51 New Jersey -1.0226 Ohio 0.01

UNITED STATES 0.00

INDEX OF ECONOMIC MOMENTUM1 IN THE STATES: JUNE 2011

1Weighted average growth in personal income, employment and population (Federal Funds Information for States, June 2011).

51

CHANGING POPULATION MIGRATIONIN THE STATES 2006-09

Source: Federal Funds Information for States (2009). State Policy Reports, Vol. 27, No. 21.

California (793,578)New York (639,918)Michigan (356,139)New Jersey (229,605)Illinois (229,524)

Texas 644,310North Carolina 373,278Arizona 298,480Georgia 298,235South Carolina 183,159

OUT-MIGRATION: TOP 5 STATES

IN-MIGRATION: TOP 5 STATES 7th Louisiana (184,145)20th New Mexico 21,712

52

STATE BOND RATINGS: AUGUST 2011

Delaware AAA Alaska AA+ Alabama AA Arizona AA-

Florida AAA Idaho AA+ Arkansas AA Kentucky AA-Georgia AAA Kansas AA+ Colorado AA Michigan AA-Indiana AAA New Mexico AA+ Connecticut AA New Jersey AA-

Iowa AAA North Dakota AA+ Hawaii AAMaryland AAA Ohio AA+ Louisiana AA

Minnesota AAA Oklahoma AA+ Maine AA

Missouri AAA Oregon AA+ Massachusetts AA Illinois A+Nebraska AAA South Carolina AA+ Mississippi AA California A-

North Carolina AAA South Dakota AA+ Montana AAUtah AAA Tennessee AA+ Nevada AA

Virginia AAA Texas AA+ New Hampshire AAWyoming AAA Vermont AA+ New York AA

Washington AA+ Pennsylvania AA Canada AAA

Rhode Island AA France AAAWest Virginia AA Germany AAAWisconsin AA Sweden AAA

United Kingdom AAAUSA AA+Chile AASpain AA

Source: Standard & Poor's Ratings, August 11, 2011 China AA-Up in rank since January 2010: ID, LA, NE, OR, SD, & OR; down in rank: NV, NJ. Japan AA-

Italy A+Ireland BBB+Russia BBB+India BBB-Portugal BBB-Greece CCLibya NR(August 11, 2011; NR - No rating)

SELECTED SOVEREIGN

NATIONS

TIER 1 TIER 2 TIER 4TIER 3

TIER 5

53

1. GENERAL ADVANCES

2. SMART HOME TECHNOLOGIES

3. PERSONAL SUPPORT TECHNOLOGIES

4. CLOUD COMPUTING

IV. DEVELOPMENTS IN TECHNOLOGY

54

THE ARC’s PROPHECY: 22 YEARS AGO

There is a prevailing belief …in the field of assistive technology that people with mental retardation are not appropriate consumers of assistive technology…

People with mental retardation should be named as a ‘traditionally underrepresented group’…It is the belief of the Association for Retarded Citizens of the United States that advances [in AT] will not occur without strong leadership from our federal government (Cavalier, 1988)

Source: Testimony of A. Cavalier before the Senate Subcommittee on the Handicapped, 1988.

IV.1 GENERAL ADVANCES IN TECHNOLOGY

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ADVANCES IN MICROELECTRONICS

Dramatic increase in price-performance of computing technology

Advances in wireless technology, GPS, broadband, and web-based services

Improved access to computers & the Internet including voice recognition systems

Easier to use Personal Digital Assistants (PDA’s) with “prompting capabilities” and “context-awareness”

Source: D. Braddock, State of the Science Conference, Denver, 2006.

56

A NEW GENERATION OF TECHNOLOGIES

Sources: Adapted from Business Week, August 25, 2003.

AS SOME MARKETS MATURE…

NEW HIGH-GROWTH MARKETS EMERGE…

57

“I think we can do a ‘virtual nursing home’ with technology”…

Andy GroveCo-Founder, Intel Corp.

In USA Today, 2006

IV.2: DOWN TO EARTH:SMART HOME TECHNOLOGY

58

U.S. DEMAND FOR ID RESIDENTIAL SERVICES IN THE NEXT DECADE IS 165,000

1980 1990 2000 2010 2020

Fiscal Year

0.0

300.0

600.0

900.0

Th

ou

san

ds

of

Per

son

s

259.9

345.2

440.2

607.1

772.76 or Fewer Person Settings7-15 Person SettingsPublic and Private 16 + Person Settings

Projected from 2000-2009

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

UNITED STATES

59

I/DD RESIDENTIAL SERVICES EXPECTED TO GROW BY 31,000 PERSONS 2010-2020

Projected from 2000-2009

Source: Braddock, D., State of the States in Developmental Disabilities, 2011.

1980 1990 2000 2010 2020

Fiscal Year

0

20

40

60

80

100

Th

ou

san

ds

of

Per

son

s

10.216.0

19.9

45.9

76.7

6 or Fewer Person Settings7-15 Person SettingsPublic and Private 16 + Person Settings

TEXAS

60

INTEGRATED WIRELESSSENSOR NETWORKS

IN THE FUTURE:

A combination of wireless cell phone, Internet, and sensor technology will connect people, objects, and events.

Smart homes/care will play key roles in assisted living for persons with I/DD, allowing seamless connectivity between clients, caregivers/health care providers, and parents.

61

WHERE TO PUT WIRELESS SENSORS?

TWO PRIMARY METHODS TO REMOTELY MONITOR A PERSON’S PHYSICAL AND MENTAL STATE AND LOCATION:

1. Via instrumenting the environment(Sensors located in rooms, on doorways, drawers, faucets, light switches, mattresses, pill bottles, etc.)

2. Via sensors located directly on people

Both have advantages: environmental sensors are less instrusive, and do not require user compliance. Person sensors offer more direct measurement.

62

MIT PLACELAB - BEHIND THE SCENES

Context-aware PDA with wireless sensors/motes

Source: MIT PlaceLab website at http://architecture.mit.edu/house_n/placelab.html

63

Source: Braddock, D., Coleman Institute, University of Colorado, 2010.

U.S. SMART HOME SERVICE PROVIDERS FOR PERSONS WITH ID

• IMAGINE!BOULDER AND LONGMONT, COLORADO

• REST ASSURED, LLC., LAFAYETTE, INDIANA

• SOUND RESPONSE,MADISON, WISCONSIN

64

IMAGINE! SMART HOME, BOULDER, COLORADO: COMPLETED 2009

Imagine! Smart Homes in Boulder and Longmont, Coloradohttp://www.imaginesmarthomes.org/

65

IMAGINE! SMART HOME, BOULDER, COLORADO: GREEN TECHNOLOGIES

Geothermal systems heat and cool the home

Photovoltaic cells generate electricity

66

IMAGINE! SMART HOME, LONGMONT, CO, OPENED MAY 2011

Imagine! Smart Homes in Boulder and Longmont, Coloradohttp://www.imaginesmarthomes.org/

67

• Private donations

• HUD

• Cities of Boulder and Longmont

• State of Colorado/Medicaid

FUNDING FOR HOMES

68

• Employee/manager portal for centralized information collection and reporting

• Web-based medication prompt system

• Location based activity prompting/logging

• Web based training courses

• Lifelogging of resident histories

• Family portal for daily activities and health status with text and picture-sharing

STAFF SYSTEMS

IMAGINE! SMART HOMES, BOULDER/LONGMONT

69

• Accessible control of environment and appliances

• Accessible, safe kitchen and bathroom

• Cameras monitor high-risk areas

• Automated windows and doors

• Task prompters and reminders

• Specialized, accessible PC, Internet, journalingand web conferencing

CONSUMER, ENVIRONMENTAL AND COMMUNICATIONS ADAPTATIONS

IMAGINE! SMART HOMES, BOULDER/LONGMONT

70

• Activity and safety sensors are utilized: bio-metric, motion, pressure, contact, security, fire, temp, nurse call, door threshold.

• Residents’ badges provide location, call for assistance.

• Real-time resident monitoring, alerts, reporting and care planning.

ELITE CARE/CUROTEK WEB-BASED MONITORING SYSTEM

IMAGINE! SMART HOMES, BOULDER/LONGMONT

71

IMAGINE! SMART HOME ADAPTS ELITECARE WEB-BASED MONITORING SYSTEM

72

Creating Autonomy-Risk Equilibrium

• Infrared/RF tracking• Pendant Assistance calls• Bed weight, threshold, motion• Control lights, locks, appliances• Programmable events/alerts• Building sensors/controls• Real-time Intra/Intranet• DB Reports, trends, queries

www.elitecare.comOregon Assisted Living

Oatfield EstatesJefferson Manor

Holistic care model

Open building design

Supportive technology

Elite Care Technologies CARE Systems

73

EliteCARE Copyright 2001

Assist resident Badge detects when resident

reaches his/her room Unlock their doors Turn lights on/off Turn ceiling fan on/off Disable unsafe appliances

Predict/prompt activity (future) Using statistical modeling

Source: Elite Care Corp.

SMART HOUSE BADGE

74

REST ASSURED PROGRAM

Staff person monitors several apartments simultaneously.

75

• Uses PTZ (Pan, Tilt, Zoom) cameras for monitoringin high risk areas like the kitchen

• Remote supervision via two-way audio/video communication with caregiver

• Motion, temperature, carbon monoxide, and door brake sensors used in, in addition to a Personal Emergency Response System

• Consumers report increased independence; caregiveris not a constant physical presence in the house

• Reduced overall cost of care

• Currently used primarily for third-shift support

Source: Rest Assured, Wabash, Indiana.

REST ASSURED PROGRAM

76

• Developed in collaboration with EPICS (Engineering Projects In Community Service) at Purdue University

• Serves consumers with ID

• Nearly 300 homes and apartments withover 400 consumers served in eight states: FL, GA, IL, IN, KS, MD, OH, & WI

• Recent agreement with Humana to market technology to 500,000 elderly caregivers

Source: Dustin Wright, General Manager, Rest Assured, LLC, Wabash, Indiana.

REST ASSURED PROGRAM–ATTRIBUTES

77

Monitoring Station• Professional Monitors• Communication between

Monitor and staff/ individuals served

• Access to protocols and personal intervention strategies

• Provider agency back-up• Individualized alarm

readings• Generates reports

SOUND RESPONSE SYSTEMS: MADISON

78

SENSORS

Personal Pagers

Door/Window Security Sensors

Smoke Detectors

Carbon Monoxide Detectors

Flood/Moisture Sensors

Motion/Sound Sensors

Stove Sensors

Incontinent Detectors

Other Sensors Available Upon Request

79

Completely Wireless in the Home

Cellular Transmission- No Phone or Internet Connection is Required

2-Way Communication

Event Sequencing

Data Tracking

Portable and Adaptable to People’sHomes and Abilities

EQUIPMENT FEATURES

Sound Response costs average between $25 to $850 per person per month

80

INDIANA GOVERNOR MITCH DANIELSENDORSES SMART HOME TECHNOLOGY

“We can alleviate some of the demand for Direct Support Professionals (DSPs) by identifying new service options for people who do not need intensive DSP support.

The system is tailored to the needs of each person who uses it and has been shown to improve personal independence, as well as alleviating the needs for a direct support professional where one is not needed.”

Mitch Daniels, Governor, State of IndianaThe Arc of Indiana, Meet the Candidates, Summer 2008

81

CURRENTLY HAS MEDICAID WAIVER AMENDMENT APPROVED BY CMS

• INDIANA, KANSAS, LOUISIANA, OHIO, & WEST VIRGINIA

SELF-DIRECTED WAIVER ALLOWING FOR TECHNOLOGIES

• WISCONSIN

STATES EXPRESSING INTEREST IN SUBMITTING WAIVER AMENDMENTS FOR TECHNOLOGIES TO CMS

• KENTUCKY, MASSACHUSETTS,& NEW JERSEY

STATES WITH MEDICAID SUPPORT FOR SMART HOME TECHNOLOGIES

82

RECOMMENDATIONS:o Adopt early: learn from experienceo Start small: expand incrementallyo Adopt gradually: change care procedureso Assess needs, cost-benefits, & risk o Plan pilot & evaluation with R&D partner

o Source: Rodney Bell, Coleman Institute consultant (2007)

2000 2005 2015 2020

Care information systems … on web Predictive modeling Cognitive Assistance

EVOLUTION OF SMART HOME TECHNOLOGY

We are here

83

1. PDA Task Prompting Software

2. Adapted Web Browser

3. Adapted E-mail

4. Audio Books

5. Location Tracking

6. Personal Support Robots, Teaching Technologies

II.3: PERSONAL SUPPORT TECHNOLOGIES

84

PDA TASK PROMPTING SOFTWARE

Visual Assistant (Prompting System)

Source: Ablelink Technologies, Colorado Springs (Terry & Jonathan).

85

A pocket personal computer with an integrated PC-slot digital camera;

Staff/caretakers take pictures of—and narrate--the steps in a task;

SOURCE: Ablelink Technologies, Colorado Springs.

The verbal instructions and images guide users through the steps:– Grocery shopping– Medications– Personal hygiene– Using public transportation, etc.

VISUAL ASSISTANT

86

Adapted Web Browser

The Web Trek adapted web browser improves access to the World Wide Web for people who have difficulty with reading and writing.

ADAPTED WEB BROWSER AND E-MAIL

SOURCE: Ablelink Technologies, Colorado Springs.

Adapted E-mail Program

87

Source: Ablelink Technologies, Colorado Springs; www.ablelinktech.com

ROCKET READER AUDIO BOOKS

88

LOCATION TRACKING Nextel mobile locator:

http://www.nextel.com/en/services/gps/mobile_locator Wherifone:

http://www.wherify.com/wherifone/ Accutracking:

http://www.accutracking.com/ 911 to go:

http://www.travelbygps.com/articles/tracking.php/

Contact your cell phone provider for phones/services

89

TREKKER BREEZE GPS

Verbally announces the names of streets, intersections and landmarks as you walk.

Source:http://

www.visabilitystore.org/browse.cfm/trekker-breeze-

gps/

90

INDOOR WAYFINDING SUPPORT

SOURCE: http://cognitivetech.washington.edu/assets2006_liu.pdf.

Participants preferred images with arrows, not audio alone

[In Development]

91

PERSONAL SUPPORT ROBOTS

Can serve as “life support partner” to follow a person from place to place, respond to commands, aid in activities of daily living, help with route finding, interact with others.

Source: Maja J Mataric, University of Southern California, Viterbi School of Engineering

92

Animated Teaching/Learning Tools Students choose animated images representing

themselves and their teacher.

Then students use the animated characters to engage in learning activities such as reading instruction.

Each of the 7 characters makes hundreds of emotions and expressions in real time.

For more information contact Sarel Van Vuuren at sarel@colorado.edu http://ics.colorado.edu/

TEACHING TECHNOLOGIES

93

• Envisions systems with wearable or environmental sensors that infer a user’s context and cognitive state.

• Prompts, reminders, and other forms of automatic intervention.

• Tasks addressed include navigation, remediation of memory impairments, behavioral self-regulation, and monitoring and guidance in the performance of ADLs.

Henry KautzDepartment of Computer Science

University of Rochester, January 2010

COGNITIVE ASSISTANCE FRONTIER

94

PETER BLANCK, PhD, JD, Chairman, Burton Blatt Institute, Syracuse University

DAVID BRADDOCK, PhD, Chair of Conference, Associate VP, University of Colorado

ANN CALDWELL, PhD, Chief Research and Innovations Officer, The Arc of the US

HENRY CLAYPOOL, Director, Office on Disability, US DHHS

BILL COLEMAN, founding donor, partner, Alsop-Louie Partners, San Francisco

DIANE COYLE, PhD, economist, internationally acclaimed author of The Economics of Enough: How to Run an Economy as if the Future Matters, Princeton Univ. Press

MARK EMERY, CEO, Imagine! Colorado

JIM GARDNER, PhD, President and CEO, The Council on Quality and Leadership

SHARON LEWIS, Commissioner, Administration on Developmental Disabilities, US Department of Health and Human Services (USDHHS)

WILLIAM POUND, Executive Director, National Conference of State Legislatures

JO ANN SIMMONS, Board Chair, National Down Syndrome Society

SUE SWENSON, Deputy Assist. Secretary for Special Education and Rehabilitation

NANCY THALER, Executive Director, National Association of State Directors of Developmental Disabilities Services (NASDDDS)

Coleman Institute Conference, October 13, 2011 in Westminster, CO

State of the States, State of the Nation: 2011

ColemanInstitute.org

95

CONTACT INFORMATION

David Braddock, Ph.D.Coleman-Turner Professor of Psychiatry

& Executive Director

Coleman Institute for Cognitive DisabilitiesUniversity of Colorado System (SYS 586)

3825 Iris Avenue, Suite 200Boulder, CO 80301

E-mail: braddock@cu.eduPhone: 303-492-0639

http://ColemanInstitute.org