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A “Big Tent” meeting of advocates was organized in August 2009 to look for ways to find consensus in the Autism community.
A pre-meeting survey was sent out to seek input on a wide-cross section of issues affecting individuals and families who live with Autism. After the “Big Tent” meeting, that survey was the subject of much discussion. The text of the survey was subsequently converted to a list of recommendations. (Draft #1)
In December, a number of advocates met with the Minister of Children and Youth Services (Laurel Broten) and the (then) Minister of Education, Kathleen Wynne. At that meeting we agreed that in the near future, we would present the government with a list of recommendations about how to improve services for people with Autism.
In January, advocates commented on and edited Draft #2. Comments and suggestions have been incorporated into this version, Draft #3.
We hope to have a final text into the government and released to the public by late March.
INTRODUCTION
The recommendations in this report were compiled from a wide variety of sources and represent a united position from Ontario’s most vocal autism advocates. Many of these recommendations have already been presented to government officials at prior meetings. It is our sincere hope that this time, our voices will be heard and that our report will be a starting point for an honest dialogue between the government and those who live with autism. We would be pleased to meet with the ministers to discuss any of these recommendations in further detail. Sources of recommendations include:
• The Ontario Association for Behaviour Analysis
• Autism Ontario
• Autism Resolution Ontario
• Individualized Funding Coalition for Ontario
• The Ontario Autism Coalition
• The Special Services at Home Coalition
• The Toronto Star
• The Ontario Ombudsman
RECOMMENDATIONS
Diagnosis of Autism:
1. Ontario should adopt mandatory early screening for autism as per the recommendations of the American Academy of Pediatrics: once at 18 months, and once at 24 months.
2. There should be no delays, and no waitlists, for an initial diagnosis of an autism spectrum disorder.
3. Early Intervention Services should begin for children who are waiting for a formal diagnosis of autism, and who have been followed for delayed development. A progressive approach being used by other jurisdictions, (such as California) would optimize the child’s developmental trajectory. (Footnote needed here)
Autism Intervention Program (AIP) (Diagnosis to Grade 1):
4. Once a child has been diagnosed with an ASD, a case manager should be assigned who can assist the parent(s)/guardian(s) with accessing services, completing paperwork and developing an individualized treatment plan. Ideally, the same case manager or agency would follow the child from early childhood into adulthood.
5. A diagnosis of an autism spectrum disorder should be the sole requirement for eligibility for the Autism Intervention Program. (AIP). When intervention is deemed necessary by an appropriate independent autism professional, therapy must be provided according to the best available evidence. Currently, this intervenion is intensive applied behavioural analysis. Children should not be offered subtherapeutic intervention (e.g. inadequate hours, support, or supervision).
6. Children should not be deemed ineligible for IBI because they are “too severe” or “too high functioning.” Literature has demonstrated that children with varying severity of autism will benefit from IBI.
7. IBI therapy should begin within a few weeks of diagnosis, not years. Parents continue to go bankrupt waiting for their child to receive government funding for IBI. In 2003, families could expect to wait 2-3 years to receive funding. Today, they can expect to wait 3 to five years. This extreme delay in receiving this essential therapeutic intervention can severely compromise these children’s development, and so is unacceptable.
8. When Ontario merges the sales taxes into a single HST, the cost of IBI will increase 8%, translating to costs of about $2,000-$5,000 per year, per child. Both levels of government should exempt essential therapeutic services from sales taxes.
9. The government of Ontario should create one agency, independent of all organizations, delivering therapy under the AIP, to administer the program for the entire province. This recommendation will ensure fairness and consistency in program delivery across regions.
10. Parents must be able to choose freely between Direct Funding Option (DFO) and Direct Service Option (DSO) without financial penalty and without delaying access to service.
11. Funding for DFO and DSO must be equitable. Parents who chose DFO should have all services billed and paid for reimbursed. No parent who chooses DFO should suffer financial penalty.
12. Private DFO providers should bill the AIP directly. Parents should not be required to engage in extensive administrative paperwork. DFO services should be paid without delay.
13. ABA/IBI programming should include appropriate elements of parent training and support. In the Lovaas and Smith studies, parents received training, were supervised, and were expected to extend the work undertaken during ABA programming at home as well. (Footnote needed here) This was felt to be an element required for optimal outcomes.
14. Each child should receive sufficient IBI that is customized according to their individual therapeutic needs. The length of time that a child receives IBI, and the number of hours per week he/she receives, should be determined based strictly on the best therapeutic interests of the child and best practice guidelines.
15. Therapeutic decisions about when therapy should be initiatied and discontinued should be made by the appropriately qualified autism practitioner who is undertaking the care of the child with autism spectrum disorder. Such practitioners must never be in a position of conflict of interest with their clients by virtue of having to manage governmental budgetary issues. The decision to discontinue IBI should be a clinical decision only, based on the best therapeutic interests of the child and best practice guidelines. Personal biases of care providers or budgetary considerations should not override ethical practices of service delivery.
16. Currently, there is no evidence to support the use of “Benchmarks” as developed by the Ontario Benchmarks Panel. Indeed, external benchmarks, based on specific cut-offs for whether children will continue to receive service are in direct opposition to currently available evidence. In the original Lovaas study, children who were not making sufficient gains had therapy intensified, not discontinued. (Footnote needed here) Intensive ABA is premised on the fact that children make gains at variable rates, and in varying areas. Programming is advanced on the basis of the child’s gains as determined by ongoing data collection, not on the basis of subjectively determined, non-evidence based, rigid criteria.
17. An external (not internal) appeal of a discharge from the IBI program should be available.
18. IBI/ABA services must be consistent with the laws, statutes and regulatory requirements of Ontario, including the Ontario Education Act, and also the Canadian Charter of Rights and Freedoms.
Children with autism in the school system:
19. New school-based programs to support children with autism must be developed, as recommended by the Ontario Court of Appeal in their decision on the Deskin/Wynberg case. See paragraph 76 of the court’s decision: www.ontariocourts.on.ca/decisions/2006/july/C43425.htm
20. Children receiving intensive ABA through the AIP and students attending school should receive the same quality of ABA services.
21. IBI instructor therapists currently working within the AIP should be allowed entry into the school system to support students in the classroom, so that scientifically valid, supervised ABA can be implemented.
22. A one-on-one IBI/ABA approach will remain necessary for some children who enter Grade 1. Where individuals cannot be accommodated in schools, they should be allowed to remain in appropriate programs, including, if needed, the AIP. Some school-aged children may require elements of both home or centre-based IBI in addition to school based ABA/IBI. Programming at home/centre and at school should not be mutually exclusive. Evidence in the Lovaas and Smith studies used these co-ordinated approaches. Programming for children should be seamless, consistent across venues, and communication and co-ordination across these programs should be not only allowed but mandatory.
23. In order to provide appropriate supports to students with autism (and all special needs students), special education funding should be “attached” to the student and used specifically to address that support that individual student’s success at school, rather than the current system of going into the general revenue stream of the school board.
24. While recent autism and ABA workshops and training sessions for teachers and educational assistants (EAs) and special needs assistants (SNAs) are acknowledged, ABA in the schools has not been implemented. Much of this training has been relatively superficial and has not provided enough training to allow educational staff to actually deliver evidence-based ABA intervention. ABA intervention undertaken without training or supervision may, in fact, be harmful. Effective and professionally delivered ABA must be provided in Ontario schools at all grade levels. EAs and SNAs who are supporting children with autism must be appropriately trained in ABA and should be periodically supervised to ensure the integrity of their technique (e.g. successful completion of 1 year college course in ABA or equivalent). Union issues must never supercede children’s rights to an appropriate special education.
25. The Ministry of Education should recognize that implementation of ABA programs is an ongoing process, involving regular data collection, supervised evaluation of that data, and regular revision of programs and strategies to support the student.
Capacity Building for the Delivery of ABA:
26. The government of Ontario should increase its investment in a proper training and recruitment system for IBI therapists, supervising therapists and clinical supervisors, to ensure accountability and capacity within the system.
27. The government of Ontario should develop a formal regulatory framework and credentialing system for IBI therapists. IBI Centres should be followed by an independent organization that will ensure that standards of practice are being met, that environments in which service is being delivered are safe and staff who are delivering services are qualified and competent. However, such a regulatory framework must not be used to limit the capacity of currently available ABA professionals.
28. The Ontario government should hire Board Certified Behaviour Analysts (BCBAs) for the exclusive purpose of mentoring others to achieve this designation.
29. Funding should be made available to enable and encourage teachers to pursue BCBA designation. For a “best practices” example, see www.mciu.org/Services/ServicesAthroughC/tabid/164/Default.aspx
Funding for Individuals with Autism
30. The lack of adequate Special Services at Home (SSAH) funding must be addressed. Waitlists for SSAH must be eliminated, so that families needing this funding to help cover their children’s extra special needs costs can access it promptly. Similarly, funding under the Services and Supports to Promote the Social Inclusion of Persons with Developmental Disabilities Act, 2008 must be provided in a timely way, notwithstanding the legislated contemplation of waitlists, which are unacceptable.
32. The government of Ontario should move to a system of direct individualized funding for all people with disabilities, including autism. Such funding should be flexible and portable. www.individualizedfunding.ca/about.html
33. The Ministry of Children and Youth Services must immediately ensure that Children’s Aid Societies identify situations (and report them to the ministry) in which children with severe disabilities have come into their custody because the costs related to their special care are not being covered by the provincial government, and are excessively high for their parents to meet. Parental rights must be restored in these situations, and sufficient funded services must be provided to these children.
34. The Ministry of Children and Youth Services must ensure that children with severe disabilities who require residential care are provided funding for such care outside of the child welfare system.
35. The Ministry of Children and Youth Services should remove the moratorium on funding of Special Needs Agreements. Parents should never have to give up custody of their children in order to access the services they need. www.thestar.com/news/ontario/article/670450
36. MCYS must ensure that earning ceilings for eligibility of funding through Special Needs Agreements are amended yearly to reflect economic trends.
Adult Services:
37. Transition planning for individuals with ASD to prepare for adulthood must start as early as possible, i.e. age 14 / Grade 9. The Ministry of Children and Youth Services and the Ministry of Education should work co-operatively with the Ministry of Community and Social Services to plan for this transitional period.
38. The government of Ontario should ensure sufficient and regulated services for adults with ASD in the adult/child mental health, social service, colleges/universities and developmental sectors through an Ontario-wide cross-sector policy framework and devoted funding based on a provincial needs assessment.
39. The government of Ontario should create and maintain financial supports that are not tied to “claw-backs” through ODSP, Registered Disability Savings, and welfare programs.
40. The government of Ontario should develop more day supports for adults with ASD, including vocational and employment, educational, social and recreational services/opportunities.
41. The government of Ontario should create programs devoted to monitoring and promoting the well-being and safety of adults with ASD.
42. Adults with ASD should be able to access a range of supported-living and supported work/daily activity options.
43. Adults with an ASD should be able to access professional supports including psychological, medical, and psychiatric assistance, dental care, person-centered planning, case coordination, respite care, crisis supports and legal assistance. If necessary, these services should be subsidized for individuals who are not self-sufficient.
44. The government of Ontario should implement standard eligibility criteria to services for adults with ASD based on their functional needs rather than intellectual functioning through an Ontario-wide cross-sector policy framework.
45. The government of Ontario should facilitate access to best practices education and research specific to adults with ASD across adult/child mental health, social service, colleges/universities and developmental sectors through a provincial knowledge exchange centre. This centre would:
a) Lead a provincial needs assessment;
b) Guide or seed, translate and disseminate best practice research;
c) Provide information to specialized and generic or developmental service providers;
d) Provide information to families and individuals with ASD; and
e) Track adult services available throughout the province.
46. Ontario should undertake to measure the outcomes of all children involved in all autism intervention programming. This will ensure that programs that do not provide sufficiently positive outcomes are reviewed, and those that provide superior outcomes are expanded. Quarterly reporting of all programs is important. This will also contribute to the overall body of knowledge regarding autism best practices. If possible, look at linking with Bloorview and other providers to measure outcomes and comparisons for those non verbal children with access to ABA learning both functional communication/literacy accessing low tech/high tech devices.
47. Ontario should undertake an autism census, similar to the one completed by the State of Pennsylvania in 2005. Important policy decisions about autism services must be driven by a full understanding of the number of individuals and families affected. www.dpw.state.pa.us/…/AnnualReports/AutismCensusReport-Oct2009.pdf |
The 'Ask' 
