Current AIDD Grant Period (2012-2017) Two data collection cycles: FYs 2012 and 2013—Completed FYs 2014 and 2015 (Start fall of 2015) Review.

The State of the States in Intellectual & Developmental Disabilities: Illinois

Key Partnerships

University of Colorado

Sibling Leadership

Network

National Conference of

State Legislatures

National Youth Leadership

Network

Advisory Committee

Data Collection

Current AIDD Grant Period (2012-2017)

Two data collection cycles: FYs 2012 and 2013—Completed

FYs 2014 and 2015 (Start fall of 2015) Review state budget and program document review;

Develop and implement 51 tailored state spreadsheets; collection with territories began in 2013

Obtain, interpret, and verify financial and programmatic data with

state officials; and

Disseminate and provide technical assistance.

Budget Categories

States report State Plan Medicaid (Personal Care, Rehab, Clinic, TCM); managed care (e.g. VT, WI); 1915(b/c) Waivers (e.g. MI) and Section 1115 Research and Demonstration Waivers (e.g. AZ)

State Local Federal

General Funds Local Funds Public ICF/IDMedicaid Match Local Medicaid Private ICF/ID

Other State Funds Match HCBS Waiver Rehab Services

Clinic ServicesTargeted Case Mgt.

Personal CareAdmin. Other

Other FederalTitle XX/SSGB

General Funds Local Funds Federal ICF/IDMedicaid Match Local Medicaid Other Federal

Other State Funds Match

General Funds Local Funds Federal ICF/IDMedicaid Match Local Medicaid Other Federal

Other State Funds Match

BUDGET CATERORIES/VARIABLES FORFOR STATE SPENDING/DATA COLLECTION

STATE INSTITUTIONAL SERVICES FUNDS (16 OR MORE PERSONS)

COMMUNITY SERVICES FUNDS (15 or Fewer Persons)

PRIVATE INSTITUTIONAL SERVICES FUNDS (16 OR MORE PERSONS)

SSI/ADC for HCBS Waiver

New Monograph

Overview of IDD Financial and Programmatic Trends through FY 2013

Just published by AAIDD

The Big Picture: Total I/DD Long Term Services and Supports Spending since 1977

The Impact of the Great Recession

Total I/DD Spending 1977-2013

7778

7980

8182

8384

8586

8788

8990

9192

9394

9596

9798

9900

0102

0304

0506

0708

0910

1112

13

Fiscal Year

$0

$10

$20

$30

$40

$50

$60

$70

Bill

ion

s o

f 20

13 D

olla

rs

$15.2

$31.3

$45.8

$54.4$57.8

$61.6

2011: $57.6

Source: Braddock, Hemp, Rizzolo, Tanis, & Haffer. State of the States in Developmental Disabilities, 2015

UNITED STATES

I/DD Spending Rebounds AfterThe Great Recession

7879

8081

8283

8485

8687

8889

9091

9293

9495

9697

9899

0001

0203

0405

0607

0809

1011

1213

Fiscal Year

-2.0%

0.0%

2.0%

4.0%

6.0%

8.0%

10.0%

12.0%

Pe

rce

nt

Re

al

Ch

an

ge 7.0%

3.3%

10.3%

7.1%

2.4%

6.0%

1.6%2.0%

1.5%

-0.6%

4.2%

2.4%


43 States Increased I/DD Spending From 2011-2013; 7 Reduced Spending

StateKentucky 40.3%Mississippi 38.8%Louisiana 35.3%Virginia 35.1%Missouri 34.8%Alaska 30.1%Pennsylvania 25.7%West Virginia 23.4%Montana 20.6%Georgia 19.9%Delaware 15.7%Connecticut 14.4%Maryland 13.2%South Carolina 13.0%Maine 12.7%North Dakota 12.5%Massachusetts 12.4%

% Change

Iowa 12.2%New Jersey 11.8%District of Columbia 11.4%Nebraska 10.8%Texas 10.8%Indiana 9.2%Utah 8.7%Tennessee 8.1%New Hampshire 8.0%North Carolina 8.0%Michigan 6.3%Alabama 5.8%Wisconsin 5.2%New York 4.6%Ohio 4.2%California 4.2%Oregon 4.0%

% Change

Illinois 3.9%Oklahoma 3.5%Wyoming 2.3%Nevada 1.6%South Dakota 1.4%Washington 1.3%Minnesota 0.7%Kansas 0.3%New Mexico -0.2%Idaho -0.7%Arizona -1.4%Colorado -1.6%Arkansas -2.7%Rhode Island -5.2%Vermont -7.2%Florida -9.4%Hawaii -11.4%United States 8.5%

% ChangeState


States With Inflation Adjusted I/DDSpending Cuts Year-year: 1978-2013

1978 - 7 1990 - 3 2002 - 4

1979 - 6 1991 - 6 2003 - 16

1980 - 16 1992 - 11 2004 - 17

1981 - 14 1993 - 18 2005 - 24

1982 - 14 1994 - 8 2006 - 15

1983 - 16 1995 - 11 2007 - 15

1984 - 8 1996 - 11 2008 - 17

1985 - 5 1997 - 10 2009 - 23

1986 - 5 1998 - 4 2010 - 22

1987 - 7 1999 - 10 2011 - 31

1988 - 7 2000 - 6 2012 - 13

1989 - 6 2001 - 10 2013 - 14

Funding for LTSS for People with I/DD

Institutional vs Community SpendingFY 2013: United States

3%

10%

5%3%

58%

13%

7%

$61.46 Billion

Public Institutions (16+)6 Person or Fewer

Residential & Related Community

Services

Family Support

Private Institutions (16+)

7-15 Person Settings

Supported Living/Personal Assistance

Supported Employment (1.4%)

ICF/ID (6 or fewer)


Compare Fiscal Effort Across Programs And States

IL Total Fiscal Effort: $2.70 Ranks 43rd US $4.40

IL Community Fiscal Effort: $2.01 Ranks 47th

US $3.81

Fiscal Effort is a measure of how much a state spends on I/DD LTSS per $1,000 of statewide personal income.

…in other words, how

much does your state spend after you control for state wealth – this allows you to compare your state to any other state regardless of state wealth.


Why is Medicaid Important?

Home and Community Based Services (HCBS) Waiver:

• Authorized in 1981 as a way of keeping people out of institutions while lowering costs

• Supported almost 686,000 people with DD in FY 2013

• Reimburses states for a variety of community-based services and supports

• Allows states to determine how many people they will serve and what services they will offerTotal I/DD Spending: $61.48 Billion

OtherState Funds (12%)

Other Federal Funds(10%)

OtherMedicaid (5%)

Home and Community

Based Services (HCBS) Waiver

(51%)

Intermediate Care Facilities

for Persons with I/DD

(21%)

…It made up 78% of total I/DD spending in 2013

HCBS Waiver Spending Per Capita

1 New York $277 18 Maryland $128 35 Virginia $782 Maine $241 19 South Dakota $125 36 Oklahoma $763 Vermont $240 20 Nebraska $124 37 Hawaii $744 District of Columbia $232 21 Oregon $122 38 Georgia $665 Minnesota $231 22 Massachusetts $118 39 Colorado $636 Connecticut $212 23 Indiana $117 40 Alabama $627 Alaska $211 24 Ohio $117 41 North Carolina $618 Rhode Island $198 25 Kansas $113 42 Arkansas $619 North Dakota $193 26 Kentucky $107 43 California $6010 Wyoming $182 27 Delaware $106 44 South Carolina $5911 West Virginia $181 28 Missouri $104 45 Utah $5712 New Hampshire $161 29 Arizona $98 46 Illinois $4913 Louisiana $157 30 Michigan $97 47 Florida $4414 Wisconsin $152 31 Tennessee $96 48 Texas $4215 Pennsylvania $140 32 Montana $91 49 Idaho $4016 New Mexico $137 33 New Jersey $88 50 Mississippi $3017 Iowa $130 34 Washington $87 51 Nevada $27

UNITED STATES $100


Federal-state Waiver Spending Per Capita: Fy 2013, By Region: FY 2013

$218

$167

$124

$115

$112

$98

$83

$65

$64

$58

$100

$0 $50 $100 $150 $200 $250

Federal-State Waiver Spending per Capita (General Population)

Northeast

New England

Mid-Atlantic

Great Plains

Great Lakes

Northwest

Rocky Mountain

Southwest

Pacific

Southeast

U.S.

Reg

ion

2. Northeast (NJ, NY, PR, VI) 10. Northwest (AK, ID, OR, WA)

1. New England (CT, ME, MA, NH, RI, VT) 8. Rocky Mountain (CO, MT, ND, SD, UT & WY)

3. Mid-Atlantic (DE, DC, MD, PA, VA, WV) 6. Southwest (AR, LA, NM, OK, TX)

7. Great Plains (IA, KS, MO, NE) 9. Pacific (AS, AZ, CA, CNMI, GUAM, HI, NV)

5. Great Lakes (IL, IN, MI, MN, OH, & WI) 4. Southeast (AL, FL, GA, KY, MS, NC, SC, TN)

HCBS Waiver study: What did we look at?

88 HCBS Waiver Applications for 2010:

types of services▪ definitions of services (n=1,329)

# of “users”

average units per user

average cost per unit

93 HCBS Waiver Amendments reasons for filing amendments

Rizzolo, M. C., Friedman, C., Lulinski-Norris, A., & Braddock, D. (in press – Feb/2013). Home and Community Based Services (HCBS) Waivers: A nationwide study of the states. Intellectual and Developmental Disabilities.

What services do states offer?

Over 1,300

definitions

Gobbledygook

Jargon

Community Transition Supports

Care Coordination

Companion/ Homemaker/ Chore/PA/SL

Assistive and Medical

Technologies

Residential Habilitation

Supported Employment

Adult Day Health

EducationIndividual

Goods and Services

Prevocational Services

Family Training and Counseling

Day Habilitation

Self-Advocacy Training

Health and Professional

Services

Financial Support Services

Recreation and Leisure

RespiteTransportation

Where did states propose to spend their money?

Residential Habilitation

53%

Homemaker/Chore/PA/SL11%

Day Habilitation19%

Supported Employ-

ment3% Remainder

15%

- Prevocational Services (3%)

- Family Training and Counseling (2%)- Transportation (2%)- Care Coordination (2%)- Health and Professional Services (2%)

- Respite (1%)- Assistive and Medical Technologies (1%)

o AT and Environmental Mods (0.5%)o Med Equip and PERS (0.7%)

- Community Transition Supports (<1%)- Financial Support Services (<1%)- Adult Day Health (<1%)- Individual Goods and Services (<1%)- Self Advocacy Training (<1%)- Education (<1%)- Recreation and Leisure (<1%)

Where do People with I/DD Live?

Source: Braddock, D., et al., State of the States in Developmental Disabilities, 2015, based on Fujiura (1998, 2013) and Larson et al. (2001).

Most People With I/DD Live WithFamily Caregivers

United States 2013

634,509

786,156

3,557,246

TOTAL: 4,977,911 PERSONS

13%

16%71%

Supervised Residential Setting

Alone or with RoommateWith Family Caregiver

Persons With I/DD Served By SettingIn The U.S., 2013

6%3% 33%

46%

4%

4%

4%

7-15 Group Homes35,908

Nursing Facilities 16+26,678

Private Institutions 16+22,256

Public Institutions 16+24,675

7-15 ICFs/ID20,095

6/fewer Total:504,897 (79.6%)

6/FewerSupported Living

293,956

6/Fewer Group, Foster & Host Homes, ICFs/ID,

Apartments210,941

634,509 Individuals Served


Roughly One Quarter Lived At Home With Aging Caregivers

United States 2013Caregivers Aged 60+

863,314

Caregivers Aged 41-59 1,247,882

Caregivers Aged <411,446,051

TOTAL: 3,557,246PERSONS

35%

40%

25%

Source: Braddock, D., et al., State of the States in Developmental Disabilities, 2015, based on Fujiura (1998, 2013) and Larson et al. (2001).

While Most People With I/DD Live with Family Caregivers, Only a Fraction of Families Receive Formal Supports

88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 12 13

FISCAL YEAR

0.0

0.5

1.0

1.5

2.0

2.5

3.0

3.5

4.0

4.5

MIL

LIO

NS

OF

FA

MIL

IES

0.10 0.16 0.29 0.38 0.41 0.48 0.46 0.46

2.89 2.993.14

3.32 3.38 3.48 3.51 3.56

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


Inflation-adjusted Family Support Spending Declined 2011-2013 - 78% is Waiver Funding in 2013

86 87 88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 12 13

Fiscal Year

$0.0

$1.0

$2.0

$3.0

$4.0

$5.0

Bil

lio

ns

of

2013

Do

llar

s

28%37%

43%53%

64%

71%80% 82%

$0.2$0.5

$1.2

$1.7

$2.4

$2.9$3.2

$4.2 $4.2 $4.1Non-Waiver Family Support SpendingFederal-State HCBS Waiver Spending


Trends in Utilization of State Institutions

States Continue To Close State Institutions

1969 1970 1975 1980 1985 1990 1995 2000 2005 2010 2015 2020

Year

0

25

50

75

100

125

150

175

200

Nu

mb

er o

f C

losu

res

1 2 7 10

27

46

77

113

133147

171 176


Source: Braddock, D., et al. Coleman Institute and Department of Psychiatry, University of Colorado, 2015.

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. INDIANA (2013)11. MICHIGAN (2009)12. OREGON (2009)13. MINNESOTA (2011)14. ALABAMA (2012)

States Without I/DDState-Operated Institutions


Who’s Next?Smallest Institutional Census, FY 2013

1 Idaho 36

2 Nevada 47

3 Montana 55

4 Delaware 61

5 Wyoming 78

6 North Dakota 92

7 Arizona 106

8 Nebraska 126

9 Maryland 129

10 South Dakota 140

11 Colorado 149

12 Tennessee 182

Who’s Not?

Largest Institutional Census, FY 2013

1 Texas 3,932

2 New Jersey 2,341

3 Illinois 1,790

4 California 1,348

5 North Carolina 1,300

6 Mississippi 1,157

7 Pennsylvania 1,069

8 Ohio 1,066

9 New York 1,015


37 States Finance The Remaining 153 Institutions

0 5 10 15 20 25Number of Remaining Institutions

New YorkTexas

OhioIllinois

New JerseyConnecticut

ArkansasCalifornia

MississippiNorth Carolina

PennsylvaniaSouth Carolina

VirginiaFlorida

KentuckyMassachusetts

MissouriWashington

GeorgiaOklahomaWisconsinColorado

IowaKansas

LouisianaMaryland

TennesseeArizona

DelawareIdaho

MontanaNebraska

NevadaNorth DakotaSouth Dakota

UtahWyoming

37 S

tate

s w

ith

Rem

ain

ing

Inst

itu

tio

ns

2413

1077

6

5

4

3

2

1

•10 States have one state institution remaining

• New York’s 24 “units” had an average size of 42 daily residents.

• 13 states and DC have closed all state-operated institutions.


State Institution Average Daily Costs Continue To Rise

7980

8182

8384

8586

8788

8990

9192

9394

9596

9798

9900

0102

0304

0506

0708

0910

1112

13

Fiscal Year

$0

$100

$200

$300

$400

$500

$600

$700

$800

Ad

just

ed C

ost

s P

er D

ay

$236

$245 $267$317

$397$433

$488$522

$562

$551

$612

$701


Projected Trend In Public Institutional Census: 1977-2029

77 82 87 92 97 02 07 12 17 22 27 30Year

0

20

40

60

80

100

120

140

160

Th

ou

san

ds

of

Res

iden

ts

2002-13 Projection1992-2013 Projection

150,207

24,727 (2013)

0 (2029)0 (2024)


http://www.stateofthestates.org/

You Can Make Your Own Graphs

http://www.stateofthestates.org/index.php/intellectualdevelopmental-disabilities/interactive-charts





Personalize A Chart For YourState Or Region

www.StateoftheStates.org

1. Total Fiscal Effort for I/DD Services 2. Community Fiscal Effort for I/DD Services 3. Institutional (16+) Fiscal Effort for I/DD Services 4. Community Spending as a Percent of Total I/DD Services 5. Percent of Total Out-of-Home Placements in Settings for 6 or Fewer Persons 6. Percent of Total Statewide I/DD Care-giving Families Supported by State I/DD Agencies 7. Aging I/DD Caregivers as Percent of Total Persons with I/DD 8. Individual and Family Support Spending per Capita 9. Home and Community Based Services (HCBS) Waiver Federal-State Spending per Capita 10. Average Annual Cost of Care in State-Operated 16+ Person I/DD Institutions 11. Average Daily Cost of Care in State-Operated 16+ Person I/DD Institutions 12. Nursing Facility Residents with I/DD, Per 100,000 of the State Population 13. Six-or-fewer Person Community Spending as a Percent of Total I/DD Spending 14. Unmatched State Funds Potentially Available to Match Additional Federal Medicaid Funding 15. Medicaid Percent of Total I/DD Spending 16. Public Spending for Family Support and Supported Living as a % of Total I/DD Spending

You Can Download A State Profile

Illinois Facts And Rankings Fy 2013

Out-of-Home Placements 50th in the % of people with I/DD in supervised residential settings for 1-6 people

- p. 21

Aging Caregivers Approximately 33,000 people with IDD living with caregivers over age 60

(estimated) – p. 65

Individual and Family Support use of supported living/personal assistance $9.70 per capita (US average

$24.92) – p. 48 supported employment per capita $0.68 per capita (vs. $2.76 US average) - p.

54 24th in spending per family (in family support programs) - p. 58 44th in # of families supported (in family support programs) per capita – p. 58


Financial Commitment

43rd in total fiscal effort (down from 42nd in 2011) – p.18

this is a measure of state commitment to funding services with DD

47th in community fiscal effort (down from 45th in 2011) – p.18 this measures how much the state spends in the community including

residential settings for 15 or fewer people and other support services (family supports, supported employment, personal care)

45th in spending "per capita" on HCBS Waiver - p.39

Illinois Facts And Rankings (Cont’d)


Current AIDD Grant Period (2012-2017) Two data collection cycles: FYs 2012 and 2013—Completed FYs 2014 and 2015 (Start fall of 2015) Review.

Documents

az slide

aaidd slide

state wealth

state officials

great recession slide

review state budget

developmental disabilities

united states source