January 11, 2014 Jaime HoyleSenior Staff Attorney/Health Policy Analyst

Needs of Individuals with Autism Spectrum

Disorder Transitioning from Secondary Schools

SJR 330– Senator Northam

Joint Commission on Health Care A standing Commission of the Virginia General Assembly, established in 1992 to continue

the work of Commission on Health Care for All Virginians.

Pursuant to the Code of Virginia, Title 30, Chapter 18, “The purpose of the Commission is to study, report, and make recommendations on all areas of health care provision, regulation, insurance, liability, licensing, and delivery of services. In doing so, the Commission shall endeavor to ensure that the Commonwealth as provider, financier, and regulator adopts the most cost effective and efficacious means of delivery of health care services so that the greatest number of Virginians receive quality health care.”

In July 2003, the definition of “health care” was expanded to include behavioral health.

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Joint Commission on Health Care The Joint Commission is comprised of

18 legislative members. Eight members of the Senate are appointed by the Senate Committee on Rules and 10 members from the House of Delegates are appointed by the Speaker of the House. In addition, the Secretary of Health and Human Resources serves as a non-voting, ex officio member of the Commission.

JCHC's two standing subcommittees focus on issues involving: (i) Behavioral Health Care and (ii) Healthy Living/Health Services.

2013 COMMISSION MEMBERSHIP Senator Linda T. Puller, Chair Delegate John M. O'Bannon, III, Vice-Chair Senator George L. Barker Senator Charles W.Carrico, Sr. Senator L. Louise Lucas

Senator Stephen H. MartinSenator Jeffrey L. McWatersSenator Ralph S. Northam 

Delegate Robert H. Brink Delegate David L. Bulova

Delegate Benjamin L. ClineDelegate Rosalyn R. Dance

Delegate T. Scott Garrett Delegate Algie T. Howell, Jr. Delegate Riley E. Ingram Delegate Christopher K. Peace Delegate Christopher P. Stolle The Honorable William A. Hazel, Jr., Secretary of

Health and Human Resources

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Study MandateSJR 330 (Senator Northam) directed the JCHC to study the service needs of individuals with ASD transitioning from public and private secondary schools, including needs related to:

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Housing

Day Support Services

Employment

Agenda Background Findings and Best Practice Recommendations

Transition Planning Higher Education Employment Housing Support Services

Policy Options Next Steps

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Background

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Prevalence of Diagnosed ASDs Increased Dramatically in Past 15 YearsSource (JLARC)

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1,521

Virginia Students With ASDs

in Special Education

National Estimated Prevalence Rate of ASDs

(Centers for Disease Control)

1990s 2008

1 in 150

1 in 2,500

9,136

2013

1 in 88

1998 2008 2013

14,624

+ 861%

+ 2741%

Prevalence of ASD in VA

Children with Autism in Virginia:

Source Virginia Department of Education

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Age 1999-2000 2010-2011

3-5 228 936

6-11 1,308 6,015

12-17 560 4,010

18-21 132 697

Transition planning

Prevalence of ASD in VASource: Virginia Department of Education

2012-2013PK 761

K 768

1 1,042

2 1,334

3 1,328

4 1,321

5 1,248

6 1,191

7 1,064

8 1,021

9 941

10 799

11 718

12 1,088

Total 14,624 9

Transition planning

Primary Needs of Adults with ASDWith better interventions and supports across the lifespan, a person with ASD can become more independent: Additional education or training Adequate income to be self supporting

Employment Supplement Security Income disability payments

Housing which may involve: Non-supported, independent living Group home Congregate care facility

Health care services (including therapy of all types)

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Adults with ASD Age out of Entitlement System

Services guaranteed through age 21 if eligible for Special Education

Age >21 No entitlement services Must voluntarily seek out services Must meet eligibility requirements Services are limited in availability.

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Costs Associated with ASD

Average lifetime cost to care for a person with ASD: $3.2 million.

Source: 2006 study by the Harvard School of Public Health

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Public Funding/Programs for Adults with ASD (age>21)

Program Department/Office

Intellectual Disabilities Waiver Department of Behavioral Health and Developmental Services

Individual & Family Developmental Disabilities Support Waiver

Department of Behavioral Health and Developmental Services

Elderly or Disabled with Consumer Direction Waiver Department of Medical Assistance Services

Day Support Waiver Department of Behavioral Health and Developmental Services

Vocational Rehabilitation Department for Aging and Rehabilitation Services

Woodrow Wilson Rehabilitation Center Department for Aging and Rehabilitation Services

Centers for Independent Living Department for Aging and Rehabilitation Services

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Medicaid WaiversMedicaid waivers do not guarantee access to needed supports (Source: JLARC’s report, Assessment of Services for Virginians with Autism Spectrum Disorders (HD8 – 2009) Enrollment is capped Waiting lists exist (As of 2012, ID Waiver = 5,933; DD Waiver =1,078) Only most severely disabled meet functional needs eligibility Case management services not widely available

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Our review indicates this continues to be true

Waiver Reform Department of Behavioral Health and Developmental Services

(DBHDS) will: Expand case management capacity within community services boards

(CSBs). Plan jointly with the Department of Medical Assistance Services

(DMAS) for waiver changes over the next 2 years. Create 4,170 waiver slots by June 30, 2021. Move to needs-based waivers (based on level of functionality and not

diagnosis) Recommend needed rate changes to serve those with the most complex

needs and align incentives

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Findings & Best Practice Recommendations

Transition Planning

In Virginia, IEP process must include transition planning by age 14

Students between ages of 14-21

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The Importance of Transition Planning

According to National Studies, students with ASDs have less favorable employment outcomes than students with other disabilities.

Young adults with ASD are less likely to have ever lived independently after high school than adults with other disabilities.

Data from Virginia reflects the same.

Virginia ASD Transition Indicators

2010 2011 2012

Advanced Diploma 51 (.5%) 54 (.5%) 51 (.5%)

Standard Diploma 99 (.9%) 106 (1.0%) 148 (1.4%)

Modified Diploma 23 (.2%) 22 (.2%) 35 (.3%)

Special Diploma 73 (.7%) 121 (1.2%) 97 (.9%)

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Diplomas

Virginia ASD Transition Indicators

2010 2011 2012

2-4 Year College 110 (4.3%) 89 (3.6%) 123 (4.8%)

Training Program 18 (.3%) 14 (.2%)

Day Support 23 (.4%) 12 (.2%)

No participation in postsecondary education of training program

69 (1.1%) 70 (1.1%)

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Post Secondary Training/Education

Virginia ASD Transition Indicators

2010 2011 2012

In Business or Company 29 (1.1% 21 (.8%) 63 (1.6%)

Sheltered Employment 11 (.3%)

Employed, not competitively

39 50 56

Other Employment 53 59 68

Unengaged 33 (4.5%) 45 (5.3%) 41 (4.7%

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Employment

2009 JLARC Report Also Addressed Transition Services

“Transition planning and services may not address the unique needs of students with ASDs.”

JLARC recommended that VDOE: Develop transition guidelines Create transition specialist positions Expand vocational & life skills training.

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Since 2009 JLARC Report: VDOE has issued guidelines for transition planning rather

than policy regulations to afford flexibility in meeting varying needs of individuals with ASD.

Case managers assigned to each person with an IEP. Transition coordinators staff larger school divisions. Have collaborative agreements between the local school and

the local DARS field office however, it is the families responsibility to invite other agencies, such as DARS or CSBs, to the transition meetings.

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Findings: Coordination/Collaboration Transition planning is still variable depending on

where someone lives in what school division expertise and institutional knowledge of persons included

on the transition team

There needs to be collaboration between DOE, DARS, and CSBs to ensure adults with ASDs learn about and access available community resources as they transition.

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Findings: Coordination/Collaboration Families report often DARS representative not

involved in transition planning.

Families are not the experts on ASD/community resource availability. They should not have to determine which agency representatives attend initial transition meetings

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Higher Education/Employment

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Virginia DOE Diplomas Advanced Diplomas: required for most four-year colleges

and universities. Standard Diplomas: generally required for community

colleges. Special Diplomas: ensure a person has left school with a

certain skill-set (vocation)

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2010 2011 2012Advanced Diploma 51 (.5%) 54 (.5%) 51 (.5%)

Standard Diploma 99 (.9%) 106 (1.0%) 148 (1.4%)

Modified Diploma 23 (.2%) 22 (.2%) 35 (.3%)

Special Diploma 73 (.7%) 121 (1.2%) 97 (.9%)

Post-Secondary Education Depending on where a person is on the spectrum, post-

secondary education is a realistic goal that can be successfully prepared for during transition.

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2010 2011 20122-4 Year College 110 (4.3%) 89 (3.6%) 123 (4.8%)Training Program 18 (.3%) 14 (.2%)Day Support 23 (.4%) 12 (.2%)No participation in postsecondary education of training program

69 (1.1%) 70 (1.1%)

ASD and Employment Employment provides the income to allow a person to live

independently Persons with ASD are employed at much lower rates than

those with other disabilities.

.

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2010 2011 2012

In Business or Company 29 (1.1% 21 (.8%) 63 (1.6%)

Sheltered Employment 11 (.3%)

Employed, not competitively 39 50 56

Other Employment 53 59 68

Unengaged 33 (4.5%) 45 (5.3%) 41 (4.7%

ASD and Employment Employment is a realistic goal for most if

appropriate planning has taken place appropriate level of supports are available across the

lifespan

For persons with higher needs training and services are available: Segregated employment- “sheltered workshops” Constant or intermittent oversight by job coach

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DARS Services DARS is responsible for providing employment supports for

individuals with ASD (if eligible) Examples of DARS Programs and Services

The Woodrow Wilson Rehabilitation Center’s Life Skills Training Program, which has been expanded to meet the needs of more individuals with ASD.

Postsecondary Education Rehabilitation Transition (PERT) which provides special education high school students, 16+, a comprehensive evaluation in the areas of vocational skills, independent living skills, and leisure and social skills.

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Current DARS Data Show: Steady increase in applications for services by

people with ASDs. In 2012, there were 1,580 individuals on the waiting list. 2008: 737 2010: 1,029 (88% of those served were transition age youth)

Individuals with ASDs require higher levels of employment supports to achieve and maintain successful employment (usually longer than 90 days allowed under supported employment)

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Current DARS Data Show:

It’s difficult to gain Access to Long-Term Employment Support Services (longer than 90 days) given funding cuts Such support services have the potential to ensure that

individuals with ASDs remain successfully employed. Lack of such supports remains a consistent

complaint from individuals with ASD and their families

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DARS Order of Selection Since the JLARC report, DARS has been using its budget to

improve vocational services for individuals in transition.

Currently operating under a Federal Order of Selection due to insufficient funds. Eligible individuals who have applied are placed on waiting lists

according to disability categories. The order of selection and waiting lists deter many from even

applying for needed services at all.

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Case Management Case management services only exist for adults enrolled in

waivers or DARS programs.

“Programs that offer case management services are not consistently available to coordinate the care of Virginians with ASDs”. Source: 2009 JLARC Autism Report

Our findings indicate that this is still the case.

CSBs could take the lead in case management for adults with ASD, but they lack staff trained in the specific needs of individuals with ASD.

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Other Employment Initiatives Project SEARCH DBHDS Employment First Initiatives:

Governor’s Executive Order 55 Virginia must provide integrated day activities & significantly shift

number of individuals in day support programs to integrated day opportunities, including supported employment.

Strategize on ways to reach out to business communities to educate and increase awareness of employing persons with disabilities.

Revise Waiver Day Support regulations to increase flexibility & emphasis on employment as the priority.

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Housing

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Transition to Housing Affordable and accessible housing is inadequate in Virginia.

Affordable housing requires income. Many persons with ASD are unemployed and receive SSI payments SSI

which typically is too low to allow a person to afford housing. SSI can become a disincentive to finding employment

Currently the housing options with adequate services are limited and expensive.

Current waiver system is based on diagnosis and acts as a barrier to persons with ASD in finding housing. DD waiver does not cover housing costs. ID Waiver covers In-Home Residential Support in congregate facilities and

congregate sponsored services.

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Housing Options could include…

Living Independently

Independent Living with Supports

Living at Home with Family

Group Homes

Sponsored Placement

Home Sharing

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DBHDS Current Housing Efforts and the DOJ Settlement

The DOJ Settlement requires DBHDS: To serve individuals in the most integrated setting consistent with

their informed choice and needs; To include a term in the performance contract with CSBs to require

case managers to continue to offer education about less restrictive community options on at least an annual basis to any individual living outside their own home or family’s home;

To assemble baseline information regarding the number of individuals who would choose independent living options;

To develop a plan to increase access to independent living options; and,

To undertake a $800,000 rental assistance pilot in an effort to address these housing needs.

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In Summary… It still remains difficult for families to navigate the

system. Families continue to report they do not understand: Waivers Options for financial assistance, employment, and housing.

One of the goals of having DBHDS as the lead agency for ASD was to create collaboration and coordination and provide the opportunity to address service gaps.

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Policy Options

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Policy OptionsOption 1: Take no action.Option 2: By letter of the JCHC Chair, encourage the Department of Behavioral Health and Developmental Services to publicize its role as lead agency for services for individuals with ASD and to highlight the link to Commonwealth Autism Services as a valuable resource on ASD information, including information related to transition services.Option 3: Introduce a budget amendment of $2,600,000 General Fund dollars to expand the case management services provided by the Department for Aging and Rehabilitative Services in order to address the increasing demand for ASD services and to enable more consistent involvement in transition planning.Option 4: Introduce a budget amendment (amount to be determined) for the Department of Behavioral Health and Developmental Services to allow community services boards (CSBs) to be involved with transition planning and provide case management services for adults with ASD (after the Department of Education is no longer involved).

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Policy OptionsOption 5: By letter of the JCHC Chair, request that the Department of Behavioral Health and Developmental Services work to improve collaboration between its agency, the Department for Aging and Rehabilitative Services, and community services boards for ASD-related services for adults (beginning with transition planning). Option 6: By letter of the JCHC Chair, request that the Department of Behavioral Health and Developmental Services form a stakeholder workgroup to develop CSB-staff competencies for providing case management for adults with ASD. Option 7: Introduce a budget amendment of $506,000 to $1,000,000 in General Fund dollars to expand Long-Term Employment Support Services administered by the Department for Aging and Rehabilitative Services.Option 8: By letter of the JCHC Chair, request that the Joint Legislative Audit and Review Commission conduct a follow-up to its 2009 report on ASD and consider our findings in completing the study.

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Next Steps

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Next Steps The JCHC voted for Option 1, Take no action.

As a result, our current work ends. The written report is complete, but has not been published. (Hoping by the end of January).

Check the Virginia General Assembly website for updates: virginiageneralassembly.gov. Click on Law & Resources on the left, then Publications on the top, then Reports to the General Assembly.

The final report will also be available by the end of January on the JCHC website.

We will continue to monitor and track related legislation during the General Assembly.

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Contact Information Website: jchc.virginia.gov Name: Jaime Hoyle

Senior Staff Attorney/Health Policy Analyst

E-mail: jhoyle@jchc.virginia.gov Fax: 804-786-5538 Mail: Joint Commission on Health

Care P.O. Box 1322

Richmond, Virginia 23218

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