Lifelong Care for many with Autism Spectrum Disorders is Costly – Bottom Line

This is a contribution from the Health Policy group at The School of Public Policy.

It has been estimated that to raise a child from birth to age 18 in Canada will cost parents $250,000. This is often perceived to be a shockingly high cost.  Now, consider that if that child has a significant neurodevelopmental disability, like autism spectrum disorder (ASD), and requires 24/7 caregiver support, the lifetime cost for the family for caregiving time alone is $5.5 million, or over $158,000 per year, above the lifetime costs of raising a “neurotypical” child.  How many families in Alberta can afford that?  Disability support that truly enhances quality of life for all who live with neurodevelopmental disabilities can be expensive and governments may not fully appreciate the amount of support needed.

Without appropriate support, individuals may suffer isolation, depression, anxiety, legal involvement, illness or even death.

Any person living with a disability, who lacks the skills to truly live a fully independent life, will need support, and that support must be provided by someone and paid for in some way.  New employment supports in Alberta will certainly help those who are employable, but outside of employment, other supports are still needed for many. Take the typical demands of daily living; tasks like driving to work, grocery shopping, cooking, cleaning the house, coordinating activities and banking.  These are all examples of independence that most neurotypical individuals are competent in, but where many individuals living with autism spectrum conditions need assistance to manage.

The costs of support range from full-on ‘doing for’ care for those who require constant supervision and assistance, costing a minimum of $158,000 per year, to lesser levels of support and costs where individuals may need lifelong coaching and teaching types of support. Costs could be even higher than $158,000 per year when someone with severe behavioural issues or added physical disability needs two caregivers to assist them.  Without appropriate support, individuals may suffer isolation, depression, anxiety, legal involvement, illness or even death.

With the closure of the Michener Centre in Red Deer finalizing the end of institutional care and confirming the Provincial Government’s commitment to moving more care into the community, demands on current community programs will increase. The Michener Centre provided quality care to highly complex individuals who required high level expertise and supervision. Finding the same level of quality care in the community may be difficult, in particular at a time when the current state of community services to provide good community care may be lacking. This is evident in the lack of quality housing options (scalding deaths and abuse), the lack of in-home and out-of-home respite options for adults with developmental disability, the lack of available and qualified workers,  the lack of post- secondary education opportunities and limited appropriate day programming for high needs adults.

In the context of unprepared systems, families will bear a higher burden of caregiving for as long as they can. Eventually, parents will die or go bankrupt and then the province will be left to take over the care. Community living is costly. Supports through the Persons with Developmental Disability (PDD) programs were recently reallocated towards encouraging employment. We recognize the good work of government to promote quality of life and move service delivery towards some of the unmet needs of persons with developmental disability by enhancing employment supports. Innovative employment supports will certainly benefit some on the spectrum. But, the re-purposing of PDD funds to support employment over enhancement of the entire system for community integration does not address the reality that some persons benefiting from PDD support for integration into the community, and relief to families supporting them may not ever obtain viable employment and career success. Nor do these changes recognize the full costs of community integration that exist for many individuals on the spectrum.