In Brant, those of you that might qualify for restricted funding… asking you to catch the can that carries some cash and then, move on…must advocate on behalf of your child. Read the detail, share the story and then speak up! Your children will thank you. 

Ontario Minister of Children, Community and Social Services Lisa MacLeod announced sweeping changes last week to impact autism services and support:

Included:

– a move to a complete direct-to-parent funding model

– additional funds for diagnostic hubs to tackle the provincial backlog (the Regional Hub relating to Brant is Hamilton’s Ron Joyce Children’s Health Centre)

– funds will purchase as yet undefined behaviour therapies, respite and social inclusion

– It will involve income testing and limits based on a child’s age. 

– The high end lifetime budget of $140,000 for all needed services for ages 2-18      (averaging $8700/year)

– As of entry at age 7-18 that will reduce to $55,000 (averaging $4500/year)

– Some immediate effects locally will be felt as of April 1, 2019.

– The MCCSS Regional Office will be provided by Autism Ontario, A new independent intake agency will be developed by the province to assist families in registering for the program and assess their funding eligibility,

– The use of public funds for the purchase of services from private providers will be introduced to this sector starting April 1.

Excluded: 

– The funding cannot be used for the purchase of OT, PT nor SLP services

Note: Clinical assessment will play no role in the awarding of funds. 

Parents who are dedicated to the welfare of their children diagnosed with various levels of autism on the overall autism spectrum are understandably cynical of recent announcements from Premier Ford’s government. Over the precious younger years of treatments and services for this demographic, it seems that shuffling the chairs on the Titanic is the strategy du jour of provincial agencies.

Realistically, there is no magic bullet or miracle cure on the horizon, but to identify an unrealistic goal as the initiative rather than listen to the families and their children’s care-givers apparently is more politically expedient.

Apparently, the Ontario Ministry developed their initiative after the British Columbia autism funding model and considerations from Australia. B.C., by comparison, offers $182,000 over the ages 2-18 excluding: home costs; child care; respite; general recreational lessons and equipment; any items used specifically in school settings; medical services; and psychoeducational reports. The costlier services such as O.T., P.T and Language Therapies are included in B.C.

The role of child care institutions such as Lansdowne Children’s Centre in Brantford are already working to clarify the consequences of this announcement and develop a business plan to address them.

Executive Director at Lansdowne Rita-Marie Hadley comments:

“We know from waitlists and the continuing referrals to LCC and Ontario–wide that there is a huge demand.  There is a sense that the sector has a capacity issue around enough trained professional staff and that is where LCC has an advantage given our professional team is knowledgeable and experienced and as an agency we’ve earned the trust and accountability for public funds via our local work for more than 4 decades.  LCC’s child development services are nationally accredited”

However, as stated by Dr. Adrienne Perry, Ph.D., C. Psych., BCBA-D, York University in Toronto, (a co-author on an extensive review of what interventions are evidence-based for autism ),  demonstrates the waitlist numbers are beyond credibility, 

“Waitlist of 23,000 and only one-quarter of kids being served. This is blatant propaganda, frankly. First of all, there is not just one waitlist. There are waitlists for initial diagnosis. There are waitlists in each of the 9 regions for intensive behavioural intervention and waitlists for the less intensive behavioural services of various types. It is unclear what waitlist it is that has 23,000 children on it. The Minister speaks as if there are 23,000 kids who have received no service at all (and how cruel that is…) but that is simply false and is very misleading. I don’t have access to exact numbers but thousands of those kids have received the intensive service and thousands more have received the less intensive service blocks. After receiving these blocks of less intensive service (such as a social skills 10-week program) they can go back on the waitlist for another block of ABA. The vast majority of children who received the intensive service went on to receive some of the less intensive services once they entered full time school.”

It appears the Ontario Government has determined the solution to autism care is to emphasize a reduction in doubtful waiting times for access without understanding the impact on the service providers or the families. Yes, waitlists are an easy number to collect and report on. We could imagine some government report heralding the reduction of wait times on a provincial report, likely just before the next election, without any relevance to the actual level of service or quality of care offered to our children. There is no question wait listing is horrific to families, but with this new strategy, what changes will become unintended consequences for the children? What measurement tool is appropriate under the diverse complexities of ASD needs? With the gutting of actual dollars towards the available resources and staffing for children with autism, what will become the casualty to this myopic strategy… the kids?

Lansdowne’s Executive Director Hadley adds a local perspective on the complexities of treatment,

“As the autism spectrum includes a wide range of neurodevelopmental disorders, kids with ASD have a broad range of needs which LCC already delivers beyond autism treatment in the rehab, respite and recreation areas. Our focus is on making sure kids and their families receive quality, evidence-based services that meet their particular treatment goals. LCC needs to tool up to be able to provide our families an option to continue using our services with their allocated funds in the new system as we have the benefit of working within our provincial system of counterpart Children’s Treatment Centre to develop models that we’re uniquely positioned to implement without re-inventing the wheel on our own. 

“LCC is also providing support around impending transition to our valued 22-member Autism Program staff team.”

This Ontario direction excludes Occupational Therapy, Physiotherapy and Speech Therapy.

All of these regulated healthcare providers service many clients with autism currently. Another bureaucracy with inherent new costs to the taxpayer is being formed by the province to administer it. As well, the introduction of private service providers introduces a whole new layer of confusion where no current accountability and regulation exists and is a foreboding of challenging the Canada Health Act,

“The CHA establishes criteria and conditions related to insured health services and extended health care services that the provinces and territories must fulfill to receive the full federal cash contribution under the Canada Health Transfer (CHT).

The aim of the CHA is to ensure that all eligible residents of Canada have reasonable access to insured health services on a prepaid basis, without direct charges at the point of service for such services.”

The up-front dollars for younger children at 2 years, starts to diminish dramatically by age 5 and completely disappears by age 18. You are on your own at that point. It can be confusing, insofar as the innocent child’s needs change considerably during these latter years before becoming adults, and a possible alternative for medically complex cases at that age can’t be to simply look for institutional solutions.

Dr. Adrienne Perry adds,

“There are annual caps of $20,000/year for younger kids (2-5 years) in low income families which will only pay for maybe 8-10 hrs./wk. of the 25-40 hrs. they need (Notably, 10 hrs./wk. is what the control group got in one of the seminal studies on this intervention, which resulted in no change in outcome!”

Autism Ontario, http://www.autismontario.com/ a provincial organization representing the families and children with ASD across Ontario, offers another concern regarding current issues.

“These challenges also continue to be shaped by geographic, language or cultural barriers, and a provincial system that continues to operate in a siloed fashion. To support people on the spectrum, we need a commitment across all ministries, including adult services, education, health, mental health, post-secondary, and employment sectors. Without this, families will continue to struggle for support and our society will continue to fail Autistic people and their families across their lifespan.”

Each child diagnosed with autism is an individual with individual needs and individual complexities combined with individual care plans and individual outcomes defined. Notably, Minister McLeod, has determined it is a one-size-fits-all resolution that must prevail.

What Ministry is most appropriate for dealing with, a child issue, a health issue, an education issue, a cultural issue and a socio-economic issue? Is part of the problem that the resources available in all those departments combined would be more efficiently applied as a single distribution point minus the duplication of multiple administrative costs?

Seeking clarification, contact M.P.P. Will Bouma at will.bouma@pc.ola.org