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

1
Toward a Day Program for Young Adults with Autism
in Fairfax County

• Long Term Care Coordinating Council (LTCCC)
• Services Committee
• March 2006
• Draft

2
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

3
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

4
Needs, contd.

• 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

5
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.

6
Autisms 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

7
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

8
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

9
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

13
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 individuals life
• Most adults with autism are unable to work an
  eight-hour day
• Short-term nature of assistance sets up
  individuals for failure

14
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

15
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

16
Moving

• Other states have better services -- but waiting
  lists are as long or longer than Virginias
• Families wait years to qualify for services
• Families cannot be uprooted from jobs and
  communities
• Virginia cannot and should export its disability
  services problem

17
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

18
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

19
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

21
Entrepreneurship

• Marylands 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!

22
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.

23
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

24
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 [phone] email lhbcom_at_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 [phone] email ewittjr_at_cox.net