[PPT] - Administration for Community Living U.S. Department of Health and PowerPoint Presentation

SLIDE 1

Administration for Community Living

U.S. Department of Health and Human Services

Efforts to Support Community Integration

Molly Burgdorf Administration on Intellectual and Developmental Disabilities

Administration for Community Living

SLIDE 2

AIDD Overview

SLIDE 3

The DD Act

Purpose:

To assure that individuals with developmental

disabilities and their families participate in the design

f and have access to needed community services,

individualized supports, and other forms of assistance that promote self-determination, independence, productivity, and integration and inclusion in all facets of community life

3

SLIDE 4

Principles of the DD Act

Independence: To have control
Productivity: To work or make other contributions to a

household and community

Integration: Right to the same opportunities, services,

community resources as all other Americans

Inclusion: Acceptance and encouragement of presence

and participation in social, educational, work and community environments.

4

SLIDE 5

Self-Determination

Individuals with developmental disabilities have:

Ability and opportunity to communicate and make

personal decisions

Choice and control over type and intensity of services
Authority to control resources to get needed supports
Opportunity to participate in community
Support for self-advocacy, develop leadership skills,

educate policymakers, develop public policy

6

SLIDE 6

Community Integration

“Most integrated setting”

DD Act

– Integration and inclusion in all facets of community life

Americans with Disabilities Act

– End isolation and segregation of individuals with disabilities

Olmstead Decision

– "institutional placement of persons who can handle and benefit from community settings perpetuates unwarranted assumptions that persons so isolated are incapable of or unworthy of participating in community life." – "confinement in an institution severely diminishes the everyday life activities of individuals, including family relations, social contacts, work options, economic independence, educational advancement, and cultural enrichment."

SLIDE 7

DD Network

The DD Councils, P&As, and UCEDDs have unique—

although complementary—roles to play

DD Network roles have included:

– Providing resources to test new service models – Providing training on innovative strategies and evidenced-based best practices – Research and evaluation of outcomes and effectiveness – Protecting and advocating for the legal and human rights of people with I/DD

8

SLIDE 8

AIDD works to promote systems change

toward being person-centered, best supporting people with developmental disabilities and their families, and maximizing integration and inclusion in the community.

Trends in I/DD services and financing in the

U.S.

– Deinstitutionalization and the Growth of Home- and Community-Based Services

SLIDE 9

Institutional Residents with I/DD in the U.S.: 1848-2011 (in thousands)

Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary. *Excludes nursing facilities [31,234 persons in 2011]. 1848 1853 1858 1863 1868 1873 1878 1883 1888 1893 1898 1903 1908 1913 1918 1923 1928 1933 1938 1943 1948 1953 1958 1963 1968 1973 1978 1983 1988 1993 1998 2003 2008 2011

50,000 100,000 150,000 200,000 250,000

D a i l y C e n s u s 195 33.7 29.8 2011 2009

SLIDE 10

Source: Braddock et al., Coleman Institute and Department of Psychiatry, University of Colorado, 2011

SLIDE 11

Federal-State HCBS Waiver and ICF/ID Spending 1972-2011

Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary.

73 75 77 79 81 83 85 87 89 91 93 95 97 99 01 03 05 07 09 11

Fiscal Year

$0 $5 $10 $15 $20 $25 $30

Billions of 2011 Dollars $17.1 $15.5 $14.5 $12.8 $12.5 $18.6

$26.2

$27.8

ICF/ID HCBS Waiver

SLIDE 12

HCBS Waiver Spending by Disability Group: 1977 – 2008 UNITED STATES

97 98 99 00 01 02 03 04 05 06 07 08

Fiscal Year

$0 $5 $10 $15 $20 $25 $30

Billions of 2008 Dollars (Federal-State)

$0.1 $1.4 $1.5 $1.9 $2.1 $2.3 $2.4 $2.6 $2.9 $3.0 $3.2 $3.4 $3.7 $9.5 $10.9 $13.1 $14.1 $15.3 $17.5 $18.6 $20.0 $20.9 $21.9 $23.1 $23.8 Intellectual Disability Physical Disability Mental Health

Source: Braddock (2011), Univ ersity of Colorado School of Medicine, Department of Psy chiatry . Mental Health Waivers ($72.1 million)

SLIDE 13

27 States Cut in I/DD Spending in 2011: the Most in 34 Years of Data Collection

Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary.

1978 - 7 1990 - 4 2002 - 2 1979 - 6 1991 - 6 2003 - 20 1980 - 18 1992 - 11 2004 - 16 1981 - 15 1993 - 18 2005 - 21 1982 - 14 1994 - 8 2006 - 23 1983 - 17 1995 - 6 2007 - 15 1984 - 10 1996 - 10 2008 - 25 1985 - 5 1997 - 8 2009 - 24 1986 - 5 1998 - 4 2010 - 21 1987 - 7 1999 - 10 2011 - 27 1988 - 6 2000 - 6 1989 - 5 2001 - 10

SLIDE 14

Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary.

Inflation-Adjusted Growth & Decline in I/DD Spending for FY2011 by State & Percentage

State % Change State % Change State % Change Texas 11% Ohio 1% District of Columbia

1%

Kentucky 10% Nebraska 1% Washington

1%

Idaho 10% Vermont 1% Louisiana

1%

Wisconsin 7% Montana 1% Iowa

1%

North Dakota 6% Arizona 0% Maryland

2%

New Jersey 6% Georgia 0% Colorado

3%

Alaska 5% Michigan 0% Indiana

3%

Oregon 4% Connecticut

0.03%

Massachusetts

3%

Arkansas 4% North Carolina

0.03%

Pennsylvania

4%

New Hampshire 4% Minnesota

0.1%

Florida

4%

South Carolina 3% California

0.5%

Tennessee

5%

Alabama 3% Delaware

1%

Maine

5%

Virginia 3% South Dakota

1%

Utah

6%

Wyoming 3% Hawaii

1%

Mississippi

6%

Kansas 2% West Virginia

1%

New Mexico

6%

Missouri 2% Nevada

1%

Oklahoma

7%

New York 1% Illinois

1%

Rhode Island

9%

UNITED STATES

0.5%

SLIDE 15

Decline in Number of Families Supported in 2009-11

Source: Braddock, D., State of the States in Developmental Disabilities, 2012, preliminary.

*Drop (-13,819) in families supported 09-11 due to reductions of 35,035 families across 25 states. Four states, KS, NJ, TN, & UT, terminated cash subsidies in 2011.

88 89 90 91 92 93 94 95 96 97 98 99 00 01 02 03 04 05 06 07 08 09 10 11 100,000 200,000 300,000 400,000 500,000 600,000

Number of Families Supported

103,819 212,558 282,017 319,591 372,847 393,598 435,422 481,282 467,463

$4.02 BILLION, 2011

SLIDE 16

Community Living

Successfully community living may include housing, services and supports, accessible transportation, employment, asset development, meaningful opportunities for self- determination, civic participation, assistive technologies and more

SLIDE 17

Examples from AIDD and the DD Network of Efforts to Support Community Integration

SLIDE 18

Self-Advocacy

Self-Advocacy Summits

– AIDD held nine regional self-advocacy summits in 2011 and 2012 to:

Find out what is happening in the states on self-advocacy
Make state team plans to strengthen self-advocacy
Make national recommendations to strengthen self-advocacy

– Envisioning the Future Report, http://alliesinselfadvocacy.org/2011- summit-report/

National Gateway to Self-Determination Project

– A consortium of 5 UCEDDs, established a Web-based clearinghouse on resources, training, and information on Self-Determination.

– http://www.aucd.org/NGSD/template/index.cfm

19

SLIDE 19

Self-Advocacy

Partners in Policymaking, developed by the

Minnesota DD Council, evolved into a national training model

– Teaches leadership skills and techniques to develop positive partnerships with policy decision makers (e.g., elected officials, school personnel) and others who make policy decisions about services used by people with developmental disabilities and their families. – Many graduates have gone on to serve as advocates in the community.

SLIDE 20

Growth of HCBS

Iowa’s Money Follows the Person (MFP) demonstration

grant, funded through CMS

– Collaborative partnership between the Iowa Department of Human Services’ Medicaid Division and the Center for Disabilities and Development (CDD), Iowa’s University Center for Excellence in Developmental Disabilities.

CDD assisted DHS in leveraging Iowa’s $54 million MFP grant

that has three goals:

– Provide transition services necessary to assure consumers can successfully move from ICF/IDs to the least restrictive living environment of their choice. – Strengthen the HCBS system with an array of services provided under Iowa's traditional ID waiver to assure the supports in place are sufficient to sustain all eligible individuals in the community of their choice. – Rebalance the expenditures in long term care to provide improved access to home and community based services.

21

SLIDE 21

Iowa’s Money Follows the Person

Impact on Individuals’ Lives

207 individuals have transitioned

to the community

Opening first bank account
Seeing family members for

holidays for first time in many years

Having own mailbox
Getting first pay check

Impact on System

Served as an on-going needs

assessment successful.

Training support for 70 providers

and nearly 6,000 direct support professionals.

Assisting with adding services to

waiver program.

22

SLIDE 22

Growth of HCBS

Example of DD Network Collaboration -Wisconsin P&A and

UCEDD joined efforts to:

– Reduce the waiting lists for children's services by half; – Established the Children's Medicaid Waivers as a viable program with sufficient capacity to impact a significant number of children and families in every one of Wisconsin's 72 counties. – Created momentum for the program in the legislature, which contributed to the governor's decision to propose a second major increase in the 2009–2011 biennium. – Greatly reduced the risk of children with disabilities having to move into out-of-home placements as a result of having no in-home services available.

23

SLIDE 23

End the Waiting List Campaigns

In Pennsylvania, the P&A, DDC, and UCEDD

implemented a Waiting List Campaign that resulted in:

– increased resources – the development of a Prioritization of Urgency of Needs (PUNS) evaluation that establishes the need for services and helps prioritize individuals with the most urgent needs.

24

SLIDE 24

Pennsylvania – Waiting List Campaign

Impact of the Initiative:

– The state has the tools to anticipate and plan for level of need on an

ngoing basis.

– From 2003 to 2011, $317 million new dollars were appropriated for persons on the waiting list. – Due to unmet needs identified by PUNS, the 2011 proposed budget includes an additional $228 million to meet the needs of individuals currently underserved through the state's Medicaid waiver program. – The PUNS methodology is a successful model for assessing service needs and priorities and with support from the UCEDD has been adapted for use in five states with an additional three states using an approach modeled on PUNS.

25

SLIDE 25

Employment

An important component of community living

– Economic benefit, opportunity to engage with the community, build social relationships, etc.

Key components for success include:

– High expectations – Flexible supports – Person-centered planning and self-determination – Preparation and education

For example, AIDD funds the Consortium to Enhance

Postsecondary Education for Individuals with Developmental Disabilities

http://www.thinkcollege.net/

SLIDE 26

Employment

Access to Integrated Employment: National Data Collection on Day and

Employment Services for Citizens with Developmental Disabilities, http://www.statedata.info

Partnerships in Employment Systems Change grants

– Awarded six projects to develop and implement initiatives to improve the employment outcomes of individuals with I/DD to participate in competitive employment in integrated settings and improve statewide system policies and practices.

DD Network entities work in collaboration with the national State Employment

Leadership Network (SELN) and state agency partners

Partners in Employment

– On-line training course from Minnesota DD Council

Employment First - integrated employment as the first employment option for

individuals with significant disabilities, including intellectual and developmental disabilities (I/DD). AIDD partnership with ODEP on this effort

27

SLIDE 27

State Success in Integrated Employment Varies Widely

0% 20% 40% 60% 80% 100%

Source: U Mass Boston ICI I/DD Agency Survey 2009

Washington State (88%) Oklahoma (60%) Connecticut (54%) Louisiana (47%) New Hampshire (46%)

SLIDE 28

Employment

Implications of Olmstead in an employment context

The Oregon P&A is part of a class action lawsuit

challenging Oregon’s failure to provide supported employment services to more than 2,300 state residents who are segregated in sheltered workshops

– Claims the state is violating the ADA and the Rehabilitation Act by not offering competitive integrated employment

pportunities

SLIDE 29

Data Collection and Quality Measures

Data Collection Projects include:

– The State of the States in Developmental Disabilities, http://sos.arielmis.net/ – The National Residential Information System Project: Ongoing Data Collection and Information Dissemination on Residential Services for Persons with Developmental Disabilities (RISP), http://www.rtc.umn.edu/risp/main/index.asp – Community of Practice for Supporting Families of Persons with I/DD

National Core Indicators (NCI), http://www.nationalcoreindicators.org

– Origin as multi-state collaboration of state DD agencies to measure how well public systems for people with developmental disabilities perform – Measure performance of I/DD services and supports within & across states, while improving the well-being and participation of people with I/DD in community life.

AIDD’s funding to expand the availability of system performance data across all 50 states

and the District of Columbia

individual outcomes; family outcomes; health, welfare and rights; staff stability; and

system performance.

SLIDE 30

Community Monitoring

Ensuring Safety (balanced with dignity of risk)
Continuous education to providers, ourselves,

and people with disabilities, about true person-centered and directed supports

Not just integrated setting but most integrated

setting

31

SLIDE 31

Community Monitoring

AIDD funded the North Carolina and Alabama

P&As to:

– Monitor at least 20 community settings (6 or fewer residents with intellectual disabilities) – Provide advocacy to at least 10 individuals identified through the monitoring process.

– NDRN report: Keeping the Promise: True Community Integration and the Need for Monitoring and Advocacy, http://ndrn.org/images/Documents/Resources/Publication s/Reports/Keeping_the_Promise.pdf

32

SLIDE 32

Community Monitoring

Project Findings:

Environmental Safety Hazards
Medical Issues (e.g., Deaths of Individuals with

Medically Complex Needs)

Communication Issues
Education Issues
Employment Issues

33

SLIDE 33

Community Monitoring

Project Findings:

Individuals and their families were generally
satisfied. They liked:

– more independence – making their own choices – interacting with others

However, there is still much progress to be

made to ensure that they have the meaningful, full lives.

34

SLIDE 34

Administration on Intellectual and Developmental Disabilities

Administration for Community Living U.S. Department of Health and Human Services

200 Independence Ave. Room 405 D Washington, D.C. 20201 (p) 202-690-6590 (f) 202-205-8037

AIDD website: http://transition.acf.hhs.gov/programs/add

ACL website: http://www.hhs.gov/acl