You Can’t Ignore These Autism Care Advocates

Enabled Kids is attending the Health and Wellbeing in Developmental Disabilities Two-Day Conference (HWDD) at the Eaton Chelsea Hotel in downtown Toronto. We will be bringing you live blog posts from the conference venue on Nov. 12th and 13th.



Dr. Jonathan Weiss illustrating the results of his study of biological links, psychological and social vulnerabilities of autistic children.


At HWDD’s morning keynote session on Nov. 13th, Dr. Helene Ouellette-Kuntz (Queens University), Dr. Jonathan Weiss (York University) and Dr. Susan L. Parish (Brandels University) co-presented a compelling argument for policymakers to work on smarter healthcare policies specifically for families with autistic children.

Dr. Parish illustrated the context of healthcare services for children with autism in the U.S. and explained why the costs of healthcare for this population is remarkably more expensive to both families and the public health system.

With the surveys she has examined in her research, she points out that there are currently marked inadequacies in health care access for children with autism. They show high rates of unmet need for healthcare and family support, received delayed care and had difficulty receiving referrals to other caregivers.

She suggested that children with autism are simply more expensive than children with other special healthcare needs. With great financial difficulties, a great percentage of parents in Parish’s research reduced or stopped their employment to care for their autistic child, yet they had to pay for more than $1,000 for medical care annually and additional income was needed for caring their child.

“Families raising children with autism lack adequate financial resources,” she repeated.

Furthermore, she listed how most adults have their highest period of earnings prior to retirement. However, in families with autistic children, the earnings of the parents lie flat between the ages of 45-64, meaning that these parents are not earning more, nor are they generating enough savings for retirement. She proposed that the possible explanation is that caring for children with disabilities takes a significant mental and health toll on the caregivers, and the income of the families also is unstable because of this.

Parish specified that the median liquid assets, meaning “cash that parents have in savings for possible crises, such as a car breaking down or a sudden health emergency”, were exceptionally low in parents with kids with disabilities. She pointed out that this was crucial because this means families with children with disabilities cannot buffer stability when there are unexpected costs. Also, they can’t seem to accrue savings, which Parish expressed worry over.

Her research has been used to advocate for public health insurance, which she finds to be vital for children with autism. She insists that when for example the states in the U.S. spend more per capita on Medicaid (the U.S. health program for families and individuals with low income and resources), families who care for a child with autism have lower out-of-pocket costs.



Dr. Parish illustrating the significance of Medicaid support for children with autism in the U.S.


Parish mentioned that economic recovery is underway in the U.S. now but it is not as robust as hoped for. A high unemployment rate of 7.1% persists, and 19 states have not recovered to pre-recession levels. All these states have a high possibility of cutting Medicaid, which would affect a lot of families with huge burdens of hardship expenditures.

She concluded, “The time for advocacy has never been more pressing. State budgets will continue to be strained; families will continue to struggle to secure services for their children with autism and to stay afloat financially. Families are really struggling to make ends meet.”

Are you a parent of an autistic child? Do you think that you would greatly benefit from more financial support from the government? Let us know by COMMENTING below!

About the author

has written 15 articles for Enabled Kids.

One thought on “You Can’t Ignore These Autism Care Advocates

  1. We need more IBI funding. It was a sad day when my son was transitioned for IBI at the Geneva Centre to public school. While the school is trying to meet my child’s needs, it is no match for one-to-one IBI. I feel my child’s progress has slowed. We need to get more help but affording it is difficult.

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