Guidelines for the transition phase before the planning and implementation of the New Ontario Autism Program in 2017: More questions and challenges?

Some historical background relative to this post: on 29 March 2016, the Ontario Ministry of Children and Youth has announced that they would take off funding from children five years old and above, diagnosed with autism spectrum, previously found eligible and suitable for services and funding for Intensive Behaviour Intervention (IBI). The main reason is to cut the wait list and offer services, therapy and funding for children who are in the appropriate developmental window (aged 2–4 years old).

On 28 June 2016, following the fiasco created by the previous announcement, the newly appointed MCYS Minister Michael Coteau has made a sort of “reversal” to the previous announcement and reinstated services and funding. The post is about the “reversal” and the guidelines stipulated for this.

This post has two tangents: (1) continuing services for children currently receiving services and funding for those five years old and above; and (2) the new guidelines released yesterday, 15 August 2016 (1.5 months after the announcement was made and with intense pressure from parents), about the rolling funding for children who were removed from the IBI list.

From the MCYS website, the capsule points from Minister Coteau’s announcement are as follows:

Children who are five years and older who are currently receiving IBI will not be removed from services. They will continue with their current service plans until their next regular clinical progress assessments, when their clinician will then work with the child’s family to develop an individualized service plan that will bridge them into the new Ontario Autism Program. The intensity of services will be based on the child’s individual needs and their individualized service plan.” (MCYS, 29 June 2016)

More information about children who are currently in-services were released by the MCYS in July 2016, and the said guidelines were just reinforcing what the Minister has said that there will be no transitions or “discharge” from services.

With a just interpretation, what this means is that children on the autism spectrum in Ontario, who are in the IBI program will continue to receive services and funding until there is a program in place called the new Ontario Autism Program (OAP). This new OAP is expected to pilot or start by June 2017.

Indeed, the said announcement was a relief for parents and families of children receiving services because their children who have been considered to have “aged out” as they patiently waited for years for these services and funding will not be penalized for their patience.

The following are the good points of this announcement:

  1. Children will receive services and funding and will not be discriminated on the basis of age;
  2. The Clinician-in-charge of a particular child, who is directly working with the child and his/her family has the most say in terms of programming. Read: the Regional Providers or the Autism Intervention Providers’ clinician-employees, do not have a decision power in terms of programming and discharge. This applies mostly to children who are in the Direct Funding Option (DFO). This is contrary to what has been practiced by the AIPs in having the full hand in decision making and funding management.
  3. The intensity of services is based on the needs of an individual child. I am certainly delighted by this, as the previous cap of 20–25 hours and then reducing it over the years as decided by the AIPs will no longer be in place.

However, there are some challenges to this tangent. The first is that while the MCYS has assured parents and families of children in services will not be discriminated on the basis of age, the “gatekeepers’ mechanism” of administration in terms of continuing the funding, was not totally clear. And I think that this is always a problem in line with administration of any government program and funding. Most often, the rationale is good and the spirit out of which the program is crafted is with good intentions, but corruption and violence set in with poor administration. Let me expound on this further.

When I conceptualize a “gatekeepers’ mechanism” in this particular government program — I could think about how the AIPs are given an extent of power to interpret the MCYS’ announcement as well as act in favour or not in favour of the children currently in services and their families. It was not so long ago, in 2013, when the Auditor General of Ontario has released a report that the intense problem of long waiting list for Autism Services in Ontario is due to the mismanagement of the programs and funding by some or even most of the Regional Providers. While it will be hasty to claim that these gatekeepers will not act in favour of the children and their families in this transition phase, historical accounts, documents and reports by the Auditor General and many other parents’ narratives have informed how the AIPs have used or “abused” their powers at the expense of children who deserve to receive services. Putting the current AIPs in the same implementation role and without any ongoing accountability measure in place, does not actually resolve the problem of corruption. It also ignores the struggles of parents and families have in dealing with these AIPs. If the MCYS really wants social critical transformation through a better program for children on the autism spectrum and claim that the new OAP’s goal is to embody this, I think that there should be a significant probe on the AIPs. There should be an extensive re-thinking of their roles in this transition phase and this new OAP in 2017. Now with the AIPs’ powers as gatekeepers still in place, the battle still holds. Also, the nine AIPs have their varying implementation of this program and these differences in implementation may challenge the right of the children to have fair and immediate access to services. Particularly one AIP may see transition as reduction of hours, while another AIPs may not deem it as such.

Furthermore, while I am very delighted to hear that the Clinician-in-charge of an individual child’s programs have the responsibility to decide about the specifics of program, if the AIPs and their “clinician-employees” still hold the power regarding funding, I think the battle continues. To hold the money even if it is not yours make make one to feel he or she is an dominant or privileged position.

The second tangent of this post is about the rolling funding, as a stop-gap measure for children removed from the waiting list. In the 29 March 2016 MCYS’ announcement, children who were removed from the IBI waiting list have access to an immediate funding of $8,000 to individually purchase private services available in their respective communities. This of course is an insult to the children and their families who have been waiting for years, as the $8,000 can not even cover 2 months of therapy. Perhaps, realizing that this is a problem of miscalculation (well, I am kindly giving the MCYS benefit of the doubt), the 28 June 2016 announcement made by Minister Couteau resolves this challenge by promising a rolling funding of $10,000 every 10 weeks. Through this children aged five and above who were removed from the waiting list can access immediate services. This is a good thing for this means that:

  1. Children will have immediate access to services and funding they need through private therapies.
  2. Gearing towards a DFO model of funding, parents and families may find the appropriate people to work with and for their children.
  3. It seems that AIPs have lesser power within this rolling funding system.

However, with the release of the 15 August 2016 Guidelines, there are more concerns: (1) administration capacity and power given to AIPs; and (2) the lack of professionals to serve therapies and intervention for children, especially those in the rural areas.

In the guidelines that was released yesterday, it was mentioned that,

“AIP lead agencies will offer to meet with families individually to explain their options of additional direct funding and/or priority access to ABA-based services and supports. At these meetings, providers will review the terms and conditions of both options, review eligible and ineligible expenses for the initial or additional direct funding and may offer suggestions and advice about helpful available resources” (MCYS, 15 August 2016, p. 7).

I am afraid of the above-mentioned clause. Without any intense probe on the “gatekeepers’ mechanism” of the AIPs, how can MCYS actually allow children, parents and families to once again battle with these providers? The fear is real that there will be ongoing stress and struggles as some AIPs would play a role in an implementation process. Why would one trust an agency or a provider for administration when these agencies have, over the years have manifested corruption?

On a final note, what is not taken up, when this “reversal” announcement was made are two things: (1) children were diagnosed with autism, some of whom have become adolescents or adults already, who are not previously deemed “eligible and suitable” by the AIPs for early intervention, are “forgotten”. While the MCYS Minister said that every child with autism in the Ontario province will have the access to intensive forms of services that they individually need, the previous tests employed by the AIPs have eliminated and discriminated those who are rendered to be not eligible and suitable on the basis of their function. I hate these labels but for you to understand what I am referring to — high functioning and children diagnosed with Asperger’s were expected to stride through without any key services and those who are labelled low functioning were totally discriminated because the system deems them to have no hope in learning. These extremes are often categorized as not eligible and suitable. These children were discriminated at the onset and without any mention of them in the guidelines, they are further placed in the absent centre. There needs to be something that must be done for them; and (2) the transition plan and perhaps new OAP in 2017 is clinging to ABA model of intervention. Of course scientific studies would manifest that among the interventions for Autism, ABA is the most effective. However, with only considering ABA to be the option in a narrow pipeline, some other forms of intervention and services which may be suitable and appropriate for children in their unique individuality and positionality are ignored. Remember, whether one is in autism spectrum or not, each person is unique and this must be respected through honouring and considering their individual needs.

References:

Auditor General Ontario (2013a). News Release on Autism Services in Ontario. Retrieved from http://www.auditor.on.ca/en/content/news/13_newsreleases/2013news_3.01autism.pdf

Auditor General Ontario (2013b). Autism Services. Annual Report. Retrieved from http://www.auditor.on.ca/en/content/annualreports/arreports/en13/301en13.pdf

Ministry of Children and Youth Services (2016a). Ontario Investing 333million to Improve Autism Services. Retrieved from https://news.ontario.ca/mcys/en/2016/03/ontario-investing-333-million-to-improve-autism-services.html

Ministry of Children and Youth Services (2016b). Action on Autism: Online Engagment Sessions, PowerPoint Slides. Retrieved from http://www.children.gov.on.ca/htdocs/English/documents/topics/specialneeds/autism/OAP-web-presentation-EN.pdf

Ministry of Children and Youth Services (2016c). Statement by the Honourable Michael Coteau. Retrieved from http://www.children.gov.on.ca/htdocs/English/news/speeches/06292016.aspx

The Star (2013). Auditor general’s report: Echoes of years of complaints about autism services in disarray. Retrieved from: http://www.thestar.com/news/queenspark/2013/12/10/auditor_generals_report_autism_services_in_disarray.html>

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