Letter to Minister MacLeod regarding recent changes to the Ontario Autism Program

Feb. 17, 2019

The Thunder Bay and Muskoka Family Networks have collectively sent the following letter to Minister MacLeod regarding recent changes to the Ontario Autism Program. We have spent considerable time looking in to the announced changes and gathering information and feedback. While we understand some families and partners may be in support of this, we believe there are some real concerns to be addressed, particularly the lack of consultation with families in the North and an absence of specifics on a plan for Northern/rural/First Nations families. We look forward to a reply from Minister MacLeod.

February 17, 2019

The Honourable Lisa MacLeod, MPP
Minister of Children, Community and Social Services
6th Floor, Hepburn Block
80 Grosvenor Street
Toronto, Ontario M7A 1E9

Dear Minister MacLeod:
We, the members of Thunder Bay Family Network and Muskoka Family Network, are writing to collectively express our concerns with the recent changes announced to the Ontario Autism Program regarding how services are delivered as well as the process by which family consultation was done.

During the announcement, reference was made several times to this being a "province wide" solution, however this does not appear to be the case. As per comments made by MPP Amy Fee, who listed those communities where round tables with families occurred, the lack of consult within Northeastern and Northwestern Ontario was glaringly noted. There are unique circumstances in the North for families due to geography, lack of service providers, and limited access to services in general, all of which does not appear to have been considered or understood in this process. We are extremely disappointed that no details for a Northern/remote First Nations/rural plan were addressed in the announcement, which have left families in our areas anxious and unsure of the future.

We fully support direct funding for families so they may make the choices that work best for them. However the amounts allocated to families do not allow for services based on needs and for many these funds may not cover the full behaviour therapy that is necessary for their child or may exceed what is required. This is a misuse of public funds and does not promote the unique and varying needs of each individual child. We feel that government should be required to provide this evidence based treatment, based on needs, as a right for children much the same as health care and education are necessary for quality of life.

While your plan's intention is to clear the waitlist and that is a concern we all share, we believe that the formula provided will actually do the opposite and leave families unable to access and/or continue the treatment their children so desperately need. Specific to Northern Ontario, lack of services providers will be a huge barrier for families who already have great difficulty finding workers through programs such as Special Services at Home and Passport. Now they must attempt to seek out qualified therapists of which we are in short supply.

We have detailed below some specific questions that we are seeking a timely response to:

  • What is the specific plan for Northern/remote First Nation/rural families and will additional funds be provided for items such as mileage, travel, etc.
  • How will you ensure there are enough trained and qualified staff to fulfill the needs of all families?
  • What is the specific role that Autism Ontario will play in this new process?
  • Will the independent agency being set up to assist families in managing these funds take a fee or percentage from the allocated amounts for doing so?
  • Will the allotment of funds including respite services mean a decrease to other funding such as Special Services at Home and respite care agencies?
  • Is there an action plan/follow up for families when their funds run out and their children are unable to continue with therapy?
  • Will you, in future, commit to consultation with families and groups in both Northeastern and Northwestern Ontario for all matters related to services for those with developmental disabilities so as to ensure truly "province wide" solutions?

Family Networks provide a safe and autonomous place for families to connect, support, and educate one another. Our families seek the best lives possible for their loved ones based on the strengths, gifts, and desires each person possesses as the fundamental right all of us have to live a good life. Canada has signed and ratified the United Nations Convention on the Rights of Persons with Disabilities and as such Ontario's Developmental Services must uphold the rights afforded under this convention. However, after fifteen years of working to transform developmental services into an "accessible, fair and sustainable system of community-based supports", people and families are still waiting for that regular life in community just like their siblings, cousins, friends and neighbours. We support change and reform that reflects these rights and consultation with families that is based on the needs of the entire province, which includes Northern Ontario.

Sharon Bak, Thunder Bay Family Networ
Carla O'Neill, Muskoka Family Network

cc Norman Miller, Michael Gravelle, Judith Montieth-Farrell, Greg Rickford, Guy Bourgouin

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