IBI Service Delivery

1. IBI Service Delivery Laura and Bruce McIntosh 905-761-5226 bruce.mcintosh@rogers.com

2. 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 therapy—and he’s “off block” until September because there aren’t enough Speech Pathologists available • Despite our education and political skills, that’s all we’ve been able to get for him. It’s not enough.

3. Our Story (cont’d) • Don’t 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 • That’s almost half of Laura’s 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)

4. Goals and Objectives • Release existing funds sooner for IBI therapy • Eliminate waiting lists • Premier’s commitment is on the record • Avoid bad coverage in the media • Help more autistic children like Cliff

5. 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 trend—B.C., Nfld., several U.S. states

7. Waiting lists waste money • Delay in receiving service necessitates a re-assessment at intake—$2,000-3,000 per child • If there are 2,000 kids on the wait list province-wide, that’s $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 half—in their case that’s $1 million saved—per child (Jacobson, Mulick and Green, 1998) • 3 new referrals/week in York Region means about 18/week or 932/year province-wide

8. The Kinark situation • Stated in April ’03 that they would cut spaces from 120 to 80 to prevent going over budget through “aging out”—i.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” spent—only 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

9. 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 Kinark’s decision—they put their own program first

10. 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

11. 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

12. 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 families—income too high to qualify for Assistance for Children with Severe Disabilities (ACSD), but too low to afford private therapy out-of-pocket

13. 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

14. 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