IBI Service Delivery

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IBI Service Delivery

• Laura and Bruce McIntosh
• 905-761-5226
• bruce.mcintosh_at_rogers.com

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Our Story

• Cliff was diagnosed in February, 2003 at
  Markham-Stouffville Hospital
• Falls at the mild end of the severe range on
  spectrum, is verbal (50 of autistic children are
  not) and also hyperlexic and suffers from petit
  mal seizures
• Is on wait lists with the following Kinark,
  Geneva Centre, York Behaviour Management and
  Thistletown
• The only government-funded therapeutic service he
  has received is 36 hours of speech therapyand
  hes off block until September because there
  arent enough Speech Pathologists available
• Despite our education and political skills,
  thats all weve been able to get for him. Its
  not enough.

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Our Story (contd)

• Dont qualify for ACSD
• Turned down by Jennifer Ashleigh Foundation and
  other charities
• Private IBI therapy (at home) will cost 30/hour
  x 20 hrs/wk (min) 2400/month or 30,000/yr
• Thats almost half of Lauras annual salary
• We know Cliff could be one the 47 of kids who go
  on to be indistinguishable from his peers in
  Grade one IF he gets IBI now (Lovaas, 1987)

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Goals and Objectives

• Release existing funds sooner for IBI therapy
• Eliminate waiting lists
• Premiers commitment is on the record
• Avoid bad coverage in the media
• Help more autistic children like Cliff

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The Big Picture

• Increasing rate of diagnosis (1 in 200)
• 18 new referrals per week (province-wide)
• Lengthening waiting lists (potentially 4,100)
• Court action for those 6 yrs. and older
• Human rights appeals for those 5 yrs. and under
• Ombudsman complaint (Martel, Sept. 02)
• Media attention

Part of a continent-wide trendB.C., Nfld.,
several U.S. states
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Waiting lists waste money

• Delay in receiving service necessitates a
  re-assessment at intake2,000-3,000 per child
• If there are 2,000 kids on the wait list
  province-wide, thats 6 million (and growing due
  to new referrals)
• State of Pennsylvania research shows that
  receiving IBI will cut future use of health and
  social services by halfin their case thats 1
  million savedper child (Jacobson, Mulick and
  Green, 1998)
• 3 new referrals/week in York Region means about
  18/week or 932/year province-wide

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The Kinark situation

• Stated in April 03 that they would cut spaces
  from 120 to 80 to prevent going over budget
  through aging outi.e. attrition will not
  create vacancies without new money
• 2003 budget was 6.3M, more than 02 budget, but
  less than the amount they accidentally
  spentonly created 29 spaces with the 800,000
  budget increase (23 in the Regional Program and 6
  DFO)
• An additional 600,000 allocated in September 03
  created 11 spaces, all DFO
• Hired two Wait List Coordinators and a Program
  Manager so admin costs will grow

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Private sector therapy costs less than Kinark
therapy

• Kinark was over budget in 2002 (spent 7.4M on a
  budget of 5.5M)
• Admin costs were 10 or 740,000
• 80 DFO kids cost about 2.85M or 35,625 per
  child (hourly rate is capped at 26.58)
• 40 regional kids cost about 3.81M or 95,250 per
  child
• DFO families pay for 10-15K of expenses that
  are covered under the regional program, even
  though guidelines say they are covered
• Private providers can do the same job for 50
  less than the government agency
• Decision to allocate funding to Regional Program
  or Direct Funding Option is Kinarks
  decisionthey put their own program first

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Private sector capacity

• Estimates given in early May, 2003, before Kinark
  cuts freed up any private spaces and before new
  money arrived
• Belief that private capacity does not exist is
  simply not accurate

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How Did We Get Here?

• The Harris government began funding IBI in 1999
• Funds are not being released due to inaccurate
  belief that additional service cannot be provided
• Inter-regional disparities in cost and delivery
  of service
• Regional Program Managers choose to allocate
  funds to Regional Program or cheaper Direct
  Funding Option
• Allowing third-party service providers to
  allocate government funding has tilted the
  playing field and prevents parents from accessing
  available services

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Option One Status Quo

• Potentially heavy back-end cost if government is
  legally cornered
• Increasing attention to the issue will highlight
  slow pace of government action
• Current program fails to help a large number of
  Ontario familiesincome too high to qualify for
  Assistance for Children with Severe Disabilities
  (ACSD), but too low to afford private therapy
  out-of-pocket

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Option Two Faster Roll-out

• Take allocation decision away from Regional
  Program Managers because they have a vested
  self-interest
• Helps more autistic children
• Money is already committed
• Allows the government to show commitment
• Respects parents right to choose
• Highlights partnership with private sector
  service providers
• Avoids fallout from Human Rights appeals and the
  Ombudsman
• Huge savings in the long run

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Let funding find the capacity

• Private IBI providers must comply with MCSS
  guidelines and are reviewed every 90 days
• Adequate funding will weed out unqualified
  providers by forcing guideline compliance, which
  is not required in the therapy black market
• Government should cover same services in DFO as
  in Regional Program provide fairness and
  parental choice (see Behaviour Institute letter)
• Fear of over-committing funds is unjustified
• Addressing the issue provides a good news
  announcement in every riding in Ontario
• Incidentally, it will also give Cliff a chance