The Care We Need Now for Intellectual Disabilities

Meet Hailey Davis (MTA)

Earlier this month, Hailey emailed me several questions about my platform that they felt were not adequately addressed on my public page. Their questions were thoughtfully sorted into four categories: “On Disability,” “On Autism,” “On Healthcare,” and “Others.” Truthfully, I did not have the answers for many of the questions in this category and admitted that I would need guidance from the community. Hailey very kindly responded to my reply by offering their knowledge and research to help me be a better advocate.

Hailey Davis (MTA) is a music therapist who works in Southern Ontario and specializes in working with disabled children with communication differences and is a low residency graduate student at Concordia University. They have lived in Waterloo their entire life.

Whether elected or not, I intend to listen to the stories and lived experiences of people in the community to determine what the best actions forward would be. One way to begin this process is to share our conversation, Hailey’s thoughts, and the information they imparted.

On Disability

Hailey expressed their concerns about improving the quality of life and reducing the system barriers people with disabilities encounter in Ontario. They inquired about the concrete actions I would take to reduce poverty and inequities faced by disabled individuals across the province.

Among these barriers is the outdated Accessibility for Ontarians with Disabilities Act (AODA), which needs an urgent update. 

The update needs to reflect current needs, and the lack of adequate funding and space for housing individuals with developmental disabilities, which often leaves many relying on aging family members and abandoned after their deaths. Strengthening home and community care services is also critical to ensure people with disabilities can maintain their independence. 

Shefaza’s Response: The Green Party Platform is to double the Ontario Disability Support Program (ODSP), it is but a start and more can be done through consultation. Similarly, to update the AODA productively, my plan is to review it with focus groups that include all members of the community across the spectrum of abilities to figure out inclusive solutions. The lack of funding for home care, elderly care, and public healthcare in general is of great concern to me as someone with aging parents and a toddler. Instead of funding highways, I would direct these funds to bolster the public health supports that we need now and for the future.

Hailey's addition: Intellectual disabilities have been historically underrepresented at the polls worldwide (A study in the UK found that 16.5% of ID people voted compared to 60.8 % of the general population). People with ID didn't even gain the right to vote in Canada until 1993 (and technically still have restricted rights in Quebec and Nunavut). The Greens are really forward thinking, and while you probably have a lot of engagements already, you could probably make a huge difference by visiting some residential homes where adults with intellectual disabilities live in Waterloo. Hailey doubts any candidate has done that before.

And because Hailey was researching it, they share some citations (as every good grad student does).

Citations

Johnson, K., & Basser, L. A. (2019). Barriers to enrolling and voting for people with intellectual disability (Research report). La Trobe University. https://www.latrobe.edu.au/__data/assets/pdf_file/0017/1016801/D19-18543-La-Trobe-University-Research-Report-Barriers-to-enrolling-and-voting-for-people-with-intellectual-disability-15-April-20191.pdf

Lai, J. (2020). The accessibility of elections to Canadians with cognitive disabilities (Unpublished research paper). York University.

United Nations Development Programme (UNDP). (2021). Political participation of persons with intellectual or psychosocial disabilities. https://www.undp.org/sites/g/files/zskgke326/files/2021-12/UNDP-II-UNPRPD-Political-Participation-of-Persons-with-Intellectual-or-Psychosocial-Disabilities-V2.pdf

On Autism

Here, Hailey expressed concern for a similar lack of needed funding for and accessibility to autism services for the autistic children and youth of Ontario.

Lengthy waiting lists are preventing families from accessing support, with individuals aging out before receiving the help they need. 

Hailey emphasized the need for a commitment to providing equitable, clinically appropriate, and need-based services, particularly by removing discriminatory age caps on funding and establishing clear and reasonable timelines for service delivery. Furthermore, they advocated for the expansion of approved services under the Ontario Autism Program (OAP) to include evidence-based therapies like music therapy, which remains not covered despite years of advocacy.

Shefaza’s Response: I have heard about the ridiculously long wait lists for autism and other special needs education and services from other parents. We definitely need to reduce that, and this would require more than just funding, but rather supported & incentivized programs for educators and programs. I would definitely support allocating these necessary supports, because how can you have a waitlist for learning?

I cannot believe that music therapy is not already on the approved list of services. I take my daughter to music together specifically because it is an excellent way to learn emotions and I support it.

I do not have sufficient information on the discriminatory age caps, could you point me toward resources on that?

Hailey’s Response: Music is so good for early childhood development, I'm writing my thesis on music therapy and a specific kind of language development common for autistic kiddos. 

So to give you a citation for the age caps. Technically the age 5 age cap was removed by the PC government, but what happens now is how much a family receives will be based on the age of their child and net income, rather than the severity of their child's condition. Families with children under six years old will be eligible for $20,000 per year, to a lifetime maximum amount of $140,000. Once a child turns six, funding drops to $5,000 per year until they are 18. Children who enter the program at older than six are eligible for up to $5,000 per year, up to a maximum of $55,000 by the time they turn 18.

Part of the problem is that the waitlist is still SO long that most families never see anything.

The biggest problem is that therapy is expensive. Therapists are highly trained, so we deserve to be paid for our work! I think a lot of people just say therapy is expensive but don't actually show what the numbers are. I think that makes a big difference. What every kid needs is different (despite blanket recommendations by doctors, but that's a different story), but I'll give a hypothetical.

You have to start with an autism evaluation (on average $2000) Let's say in this example, the child has higher support needs, they are non-speaking, have challenging behaviours and are not aware of danger. Here is what a likely provider would recommend:

• ABA therapy ($62,400 [less intensive] to $249,600 [more intensive] per year).

• Speech Therapy

  • Assessment ($150), 1:1 sessions 30 min weekly w slp ($75)($3525 per year) or w CDA ($60)($2820 per year)

  • Communication device (usually not covered by insurance), which includes Ipad (~$339), speaking program (~$150), Case because we aren't insane people ($50) & Screen protector ($30)

• Occupational Therapy, weekly ($60-$150 depending on where)($2820-$7050 per year)

• Music Therapy

  • Assessment (~$80), 1:1 sessions 30 min weekly depending (~115-$80/hr)($2115 per year)

So total a year just for therapy that's $70,954 a year on the low end, and that doesn't include having to pay for the things you need to safe guard your house (lock the fridge, special locks for front doors, safety beds, etc.) or any additional equipment (safety seat belts, sensory equipment, fixing stuff a kid breaks). 

So kids under 6 are paying for almost $51,000 worth of therapy through insurance (which is disenfranchising low-income and marginalized families who don't have access to insurance) and out of pocket, and over 6 year old nearly $66,000. 

I understand that the government has a budget but $66,000 is more than most people make in a year. It actually ends up costing the government more because these kids aren't learning the skills they need to be successful and independent. Without Speech therapy, kids don't get access to AAC devices, and then they can't communicate, have more behaviours, and later need more care in residential homes. Sort of spending more to fix the car now, or have it fall apart later!

Almost all the parents I work with have to pick and choose what therapies to put their kids in, because they can't afford it all. Further, I have had many families stop music therapy because they can't afford it, despite it being a great treatment option for their kid.

I see my clients' caregivers struggle with the financial burdens of therapy costs, and how it affects the people in my care and those in the autism community. At one point families were straight up moving to Alberta and New Brunswick to get care, because it was too expensive here.

I am really passionate about my work, and part of that involves advocating for the community, so here I am!

Shefaza's final thoughts: It was so great to hear from a passionate individual like Hailey who really cares about the needs of the community.

We need a government that cares for all of our wellbeing.