Thursday, January 16, 2014

Report: Families Face Staggering Autism Care Costs

The image above is the cover page for the report of the University of Calgary School of Public Policy: The Value of Caregiver Time: Costs of Support and Care for Individuals Living with Autism Spectrum Disorder.  The report deals with the harsh realities that many involved with government, the media and many autism groups do not wish to address. In itself that is highly unusual.  Here in New Brunswick we have had some initial successes in developing evidence based early autism intervention and school services.  We have had almost no responses in addressing adult care for autism.  Recently our government did conduct a pilot project in training support staff at a group home and that is about it after a dozen years of advocacy.   The costs of avoiding the issues have fallen largely on families with some ad hoc solutions, often costly ad hoc solutions, implemented by government.  Hopefully this report from the University of Calgary School of Public Policy will be taken seriously by our NB provincial government (as well as other provincial, territorial governments and our federal government).  The official news release of the School of Public Policy follows:
CALGARYJan. 15, 2014 /CNW/ - A report published today by The School of Public Policy identifies staggering costs associated with autism and advocates increased support for families dealing with this challenge.
"An autism diagnosis of a high-needs child at age two represents the equivalent of telling the family that they must make an immediate lump-sum investment on that day of $1.6 million, invested at a five-per-cent return, to pay for the lifetime costs of care and support their loved one will require," write Herb Emery and Carolyn Dudley, the report's authors.
These numbers form only a part of the authors' analysis, which charts lifetime support-care needs and costs for three hypothetical individuals living with varying degrees of autism spectrum disorder (ASD). The annual value of caregiver time for a "high-needs" case is $158,359. For a moderate-needs case it is $82,769 per year and for a lower-needs case it is $30,711 per year.
The authors argue that regardless of the case, costs are often underestimated by society and government, and families are left shouldering most of the burden.
"A scan of provincial programs finds a patchwork of unequal and incomplete supports for individuals living with autism spectrum disorders. Gaps are particularly evident once individuals leave the public school system, where they are at least provided with some form of day support. Sufficient adult day supports, evening and night supports, quality group homes, the availability of properly trained caregivers and respite services, recreational activities, post-secondary opportunities and employment supports all suffer varying levels of inadequacy across the country," the authors write.
Emery and Dudley identify several approaches to relieve pressure on families. Increasing the current annual caregiver tax credit of $300 is one option. Government can also show its support by providing funding to help boost the supply of caregivers and care centres. Introducing autonomy insurance, which has already been proposed in Quebec, is another government initiative that could assist adults with disabilities.
Removing the IQ screen for eligibility of services at age 18, which exists in some provinces, is another measure endorsed by the authors. This would help individuals living with ASD who have higher IQ but lack functional skills of independence. Offering these individuals support could assist them in gaining employment, which would eat into the overall costs associated with their disorder.
SOURCE The School of Public Policy - University of Calgary
Video with caption: "Video: Carolyn Dudley details the staggering costs faced by families with children with autism and what policy measures would help alleviate this financial burden.". Video available at
 For further information:
Media Contact:
Morten Paulsen
Phone: 403.399.3377

No comments: