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Toward a Day Program for Young Adults with Autism in Fairfax County

Long Term Care Coordinating Council (LTCCC)Services CommitteeMarch 2006Draft

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Problem

Approximately 1,000 students enrolled in FCPS with Autism Spectrum Disorder (ASD) as primary disability

Many are higher functioning and may earn Standard high school diplomas

No entitlements after aging out of high school at age 21-22

Pervasive social disabilities preclude employment and independent living without lifetime support

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Needs

Assistance with daily living – Meal preparation– Shopping for necessities– Behavior management– Medical care management– Emergency/Crisis response management

How to find and use public transportation – very few are able to drive

Support in employment (finding and keeping job) Assistance with daily living

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Needs, cont’d.

Support in use of leisure time and networking Continual education/improvement of skills:

– Job-based skills– Social skills– Independent living skills

Affordable, supported residential settings:– Parents lose ability to care for grown children– Parents cannot be forced to care for grown children

Manage care giver turnover Financial management services Information sources/Web sites for common interests

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Autism: Special Considerations

Autism is primarily a social disability Even those with high IQs can have the social skills of

toddlers– Violent behavior can result from inability to communicate

No effective therapies for adults have been identified Medication has limited effects Schools and agencies have underestimated the

degree to which social disabilities affect individuals’ ability to function in the community.

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Autism’s Lifelong Effects

Severe social disabilities affect all aspects of individuals’ lives – inability to understand and function in:

– Workplace– Home – Community

Families, friends, caregivers all “burn out”– Great stress, few rewards– Difficulty in finding and maintaining community supports

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Comparison to Mental Retardation

Individuals with mental retardation are eligible for VA MR Medicaid waiver

– Funded through Community Services Board; services coordinated and/or provided by CSB or its contracted agencies

– Covers vocational and independent living services– Covers residential services (group homes) in some cases– Additional funds provided by Fairfax County– MR waiver has long waiting lists– Low reimbursement rate for provides ($10.10/hr) has

resulted in 2/3 of MR waiver holders not being able to obtain services funded by waiver

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County Changes

For 18 years, Fairfax County supplemented state funds to provide day support for HS graduates with mental retardation.

When funding was available, some persons with autism and other disabilities also were served.

Over the last three years, the county has reduced the amount of support.

To cut costs, CSB voted to fund only individuals with MR (No services to those with ASD unless IQ is less than 70)

CarefaxLTC (new non profit supporting LTCCC) could fund a pilot project for day program

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Developmental Disabilities Waiver

Relatively new Medicaid waiver for developmental disabilities (DD) in Virginia

Underfunded Not enough waiver slots provided by VA Designed to be consumer-driven

– Does not directly fund group homes

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Options for Autism Grads, Others

HS Grads with autism (but not MR – i.e., higher-functioning) have limited options:– A few can attend college with supports– Work with temporary DRS support– Apply for DD waiver to fund variety of supports– Families pay for support services (“private pay”)– Move out of state– Stay at parents’ home and do nothing

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Problems with Each Option

Each option has its own problems (As Follows):

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Attending College

Very few HS grads with autism have the cognitive ability to attend college or community college

Without full-time support, they cannot handle the social challenges of a college campus

Solution is temporary– Still need nearly the full range of lifetime supports

upon completing college– George Mason LIFE Program is a good start

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DRS

VA Department of Rehabilitative Services provides temporary support designed for short-term rehabilitation of workers– Autism is a lifelong disability; support is needed

though out the individual’s life– Most adults with autism are unable to work an

eight-hour day– Short-term nature of assistance sets up

individuals for failure

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DD Waiver

Long waiting lists Under funded services

– Providers cannot be found due to low reimbursement rates Many vendors do not accept DD waiver Restrictive eligibility criteria

– Many who need help do not qualify for the waiver Nonetheless, the DD waiver is the main source of

funding available to this population for necessary lifetime supports.

Only 46 DD waivers for the entire Fairfax Falls Church Area – all disabilities

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Private Pay

Cost of services is very high - $10,000 - $100,000 or more/year

Most parents can pay these fees only for a limited number of years before draining savings

SSI income ($579/month in 2005) pays only a fraction of fees (also must cover food and rent)

Many vendors do not accept private pay clients

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Moving

Other states have better services -- but waiting lists are as long or longer than Virginia’s

Families wait years to qualify for services Families cannot be uprooted from jobs and

communities Virginia cannot and should export its

disability services problem

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Staying at Home

Unfortunately, this is the default option for much of this population

Skills learned during 20 years of costly public education are lost

Individuals isolated at home lose the few social skills they have; self-esteem plummets

Eventually parents die or cannot care for their grown children

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Search for Solutions

LTCCC Services Committee is exploring options– Pilot DayBridge program proposed for young

adults with physical disabilities plus related cognitive disabilities

Needs funding Volunteers can help but cannot run program Proposed to operate only 3 partial days per week McLean Bible Church may not be able to fulfill earlier

commitment to provide space

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Search for Solutions

Fairfax County Escrow Fund– County consultant – with input from and The Arc

of NoVA, CSB, and families – is studying how to best allocate the $500,000 “escrow” fund, and to deliver services more cost-effectively (?)

– The Arc suggests that LTCCC Services Committee meet with Verdia Haywood to discuss “marrying” our search for solutions with theirs (?)

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One Near-Term Possibility

Mt. Vernon-Lee Enterprises (MVLE) is an existing service provider that accepts DD waiver payment

MVLE has unused space available at its new facility in Chantilly

– However, program should involve interaction with the community

– Transportation needs to be provided or funded MVLE may be willing to train personnel in working with

persons with autism and design a day program– LTCCC could work with County staff in identifying grant funding

for start-up funds, including training

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Entrepreneurship

Maryland’s Division of Rehabilitation Services (DORS) has integrated persons with developmental disabilities into its RISE (Reach Independence Through Self-Employment) program, www.riseprogram.com

Client with DD needs a business advocate Client must be involved with the business and majority owner DORS provides start-up grants of up to $15,000 for equipment,

tools, initial rent, supplies, inventory, specialized training, etc. Several Arc clients in MD have started successful businesses

with support from The Arc: shredding and recycling for businesses, vending machines, food service, landscaping, producing crab mallets, even baking treats for horses!

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Functional Approach

Individuals in need of care should be assessed and grouped by functional need, not by disability label

This approach will conserve scarce dollars The Arc of NoVA is the main service and advocacy

organization for adults with mental disabilities in NoVA, and should be central to the search for solutions.

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Search for Solutions

Long-term across-the-board support is needed for this population:– Parents can not house their grown children

forever; supported, affordable residential settings are desperately needed

– Lifetime employment supports are needed– Lifetime independent living supports are needed

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Contact

This draft report was prepared by:– Leslie A. Braunstein

Member, Fairfax Area Disabilities Services Board Member, LTCCC, Services Committee Member, The Arc of Northern Virginia Board of Directors Parent of a 20-year-old son with autism Phone: 703/871-1831; email lhbcom@comcast.net

– Woody Witt Member, Fairfax Area Disabilities Services Board Member, LTCCC , Services Committee Board Member, Autism Society of America, NO VA Chapter Parent of a 15-year-old son with autism Phone :571/723-3676: email ewittjr@cox.net