Why Do Parents Have To Fight So Hard For Autism Supports?

Imagine a not-for-profit charity paying 33 executives over $4.1 million in salaries, and imagine families of autistic children left languishing on wait-lists with no immediate help, or services drastically cut during COVID. This is the state of Ontario's Regional Autism Services.

In 2016 then Minister of Child and Youth Services Michael Coteau was interviewed by the Toronto Star while the previous Liberal government was in the process of overhauling autism supports in Ontario on parents' concerns that these agencies are paying an insane amount of money to executives while families are left with little to no support.  To quote the article:

As part of the current overhaul, Coteau said his implementation team is reviewing everything from how children are assessed to salaries and administrative costs at the children’s regional centres.

“What we can’t afford is a system that’s top-heavy and low-resourced at the bottom,” he said. “I don’t know those numbers yet, but I’ve asked for them.”

In June of 2021 I asked Coteau during a roundtable meeting for parents with autism appearing in his role as the Liberal critic for children and youth, if they actually audited the regional autism providers while they were in government and followed up on concerns regarding a lack of funds reaching the front lines. Coteau stated:

"We keep asking for those numbers but we never get them."

 

Coteau went on to say that the Liberals implemented a direct funding option as a preliminary mechanism for accountability, which would give families the choice of choosing a provincially funded provider like Kinark or providing direct funds to a family to find a private provider. The thought process behind this was that these publicly funded regional providers would have to up their game on customer service and adjust operational overhead to be competitive with the private providers since many families would opt for a choice in providers. 5 years later, there has been little change on how the publicly funded regional providers act or spend transfer payments they receive from the province.

Part of the problem I've identified and wrote about last week, is that these agencies have traditionally been tasked to self regulate and audit themselves both with respect to monetary and policy compliance.

Recently the province has allocated $62 million to increase capacity at these regional autism providers. Many parents are worried that the money won't reach the front lines, especially in Northern Ontario where services for families affected by autism are basically non-existent. Sara Kitler-Pothier, who chairs a committee that fights for better autism care in northern Ontario stated in a recent interview:

"What we've done with the Northern Capacity Building Advisory Committee, is we're just trying to maintain what we do have. There's no building going on there. Until we have a long-term sustainable plan, which has to include getting more children into core service now, particularly in northern Ontario."

 

Many families have had their services cut by these publicly funded regional providers due to COVID. Many have only received virtual consultations during the pandemic not one to one support in which the province is paying for. How much money these regional autism providers have saved during the pandemic that should have gone to supporting families during the a public health crisis both in service and who are waiting for service has yet to be determined or even looked at by the province. What will the money go towards? Kids that are in service now have lost a year of support through the Ontario Autism Program. What will be done to play "catch up" with these families? Kids waiting for service and their families had no to very little support from the province during the pandemic.

To their credit (although not nearly enough has been done to address systemic issues the disabled face in this province when seeking supports), Ontario PC's have recognized the problem with the lack of oversight on financial audits conducted by these and other agencies tasked with providing support in the health care system. The PC's passed the Connecting Care Act which came into effect April 2nd, 2021.

In the Connecting Care Act these agencies now must report directly to the Auditor General every year with respect to their monetary audits. If the ministry finds a questionable situation with these agencies, the ministry and the auditor general can now intervene in real time. Section 17 of the Connecting Care Act states:

17 (1) The accounts and financial transactions of the Agency shall be audited annually by the Auditor General.

Other audits

(2) In addition to the requirement for an annual audit,

(a) the Minister may, at any time, review or audit any aspect of the operations of the Agency; and

(b) the Auditor General may, at any time, audit any aspect of the operations of the Agency.

 

Why hasn't this been done yet with the regional autism providers? And more importantly why haven't we heard from the Auditor General yet about the regional autism providers? While the Connecting Care Act does provide ministerial fiscal oversight, it does not address significant and systemic problems with staff following agency policy or professional codes of conduct of these publicly funded agencies. In fact, the Connecting Care Act encourages agencies to hire their own investigators:

"26 (1) The Agency may, where the Agency considers it in the public interest to do so, appoint one or more investigators to investigate and report on,

(a) the quality of the management of a health service provider or Ontario Health Team;

(b) the quality of the care and treatment of persons by a health service provider or an Ontario Health Team; or

(c) any other matter relating to a health service provider or Ontario Health Team. 2019, c. 5, Sched. 1, s. 26 (1); 2020, c. 13, Sched. 1, s. 2 (1, 4)."

 

As I stated in my blog last week:

When dealing with staff complaints, formal complaints procedures against staff at these agencies require the agency to hire an “independent” investigator tasked with investigating these complaints. The way these formal investigations are set up, are meant to be a deterrent for lodging a complaint against staff in the first place. A formal investigation will often include interviews conducted by a hired lawyer these NGOs task with investing a complaint. For a family or an individual dealing with a disability, having to be interviewed by a hired lawyer is intimidating, and discriminating against what most families impacted by a disability already have to deal with.

These investigations often lean on the side of the employee rather than the client. Often these investigations come down to hearsay because vulnerable clients haven’t collected direct evidence or facts needed to resolve these complaints, and rather than the customer knows best policy, the client is often the one responsible for proving a complaint has merit.

 

In 2016 Christine Elliot was handed a binder of well over 1000 pages of complaints from parents and caregivers regarding the misconduct of publicly funded regional providers and staff in her role as the Patient Ombudsman. A copy of this binder was also provided to then Liberal Minister of Children and Youth Michael Coteau at the time.  Coteau stated in an interview regarding parents’ complaints:

“When you have so many people complaining about a particular system, the status quo cannot be maintained.”

 

Why did Elliot in her current role as the Minister of Health stop short in ensuring ministerial oversight of policy compliance of these agencies?  Again, from my blog last week:

In York Region we have one NGO (York Support Services) tasked with ensuring policy and compliance of another NGO (Developmental Services of Ontario). Compliance audits should be done specifically by the ministry overseeing these agencies. These agencies should not be auditing themselves for policy and legal compliance especially when dealing with vulnerable clients. This should be totally and completely unacceptable to law makers and the public at large.

 

Over the past 15 years I've dedicated a huge block of my time having to advocate and fight for supports for my family. Almost all families effected by any type of disability have to go through the exact same situation. It's not fair, ignorant and discriminating. Fighting this horribly unaccountable system is exhausting, stressful, and has a tremendous impact on the physical and mental health of caregivers/parents. The moment I let my guard down, is the moment when policy isn't adhered to by staff, we're not told about services we qualify for, and my son starts to slip through the cracks. Every time without exception! These agencies intentionally complicate things for vulnerable families who already have way too much responsibility on their backs to begin with.

It's unacceptable to put the responsibility of agency oversight and policy compliance on the backs of parents/caregivers because these agencies are failing in their fiduciary duty to adequately protect and serve the vulnerable populations under their care as a result of self auditing their own policy and monetary compliance for decades. Logic would dictate that the focus should be on the protection of vulnerable clients and families both in service and waiting for service, rather than the focus being on protecting the interests - or staff's interests - of these agencies. Remember that it's your tax dollars that support these agencies. Demand better!