Receiving an autism spectrum disorder diagnosis is a life-changing event at any age or any stage of life. For parents of young children, it changes their hopes, dreams and expectations for their child. It impacts the parents’ relationship with each, the family dynamic and relationships with extended family and friends. A diagnosis in the elementary school years can explain why…
researchers now recommend a place where everything is under one umbrella, where a team of experts can wrap around the child. This can happen in a hospital setting, agency or center. The concept of wraparound services also extends into independent living for adults on the spectrum. As adults leave their parental home, they will need support for medical and dental needs, recreation, employment, nutrition, and daily living skills. How do we best meet these needs simply and under one roof?
By PAULINE TAM, Published in The Ottawa Citizen
OTTAWA — It’s the unspoken rule about autism services that Anne Jovanovic knows all too well: Getting help for her son, Mica, requires her to wage a constant war with the gatekeepers of provincial programs.
Since Mica was diagnosed two years ago, Jovanovic has parsed government documents and doggedly pursued officials to press her case. In doing so, the federal public servant has established herself as a mother whose demands can’t be easily dismissed.
I had an eye-opening experience this week with my social worker about my children’s services. I’ve almost run out of funding on my current contract that will expire next month. Part of the reason for this is because I have not been accessing all of the correct programs. When I said I didn’t know about a certain program, I was told it is my job as a parent to know what the programs are available and what I should be accessing. It’s on a website, which is transparent, and I should be able to figure out all of the information from there. I was dumbfounded because how do you ask a question and search for information when you don’t even know the right question to ask?
I had a similar experience when my son was younger and was still in diapers until the age of 9. A parent told me in passing that I was eligible for funding for diapers because my son was over the age of 3. Why had no one on my professional team ever told me about this program? Same thing with the disability tax credit – another thing I stumbled upon on my own quite by accident.
It boils down to this – caveat emptor or buyer beware. You have to think of yourself as a consumer even where autism supports and services are concerned, read the find print, and do some investigating to find out what you qualify for. So where do you start and who is in the know?
Parents are in a constant quest for services, no matter what the age of their child with ASD. The need for services changes with both age and circumstances. What services for people on the autism spectrum are out there and how are they accessed?
Recently Diagnosed
If you are a parent who has recently received a diagnosis, finding services can seem like a maze. A good place to start is to visit your provincial government website and look under Child and Family Services. This will be called different things in different provinces, but most governments use a similar title. The government will list how to obtain funding, what programs are offered or subsidized, and what government policy is on assisting families with a disability.