Some parents have unrealistic expectations for autism funding

Yesterday I read that Nova Scotia’s NDP government was going to double funding for pre-school children diagnosed with a moderate to severe autism spectrum disorder — from $4 million to $8 million a year.  In my opinion, that is a good investment because research has proven that the earlier you get children into an ABA or alternative program, the more likely their social interaction and verbalization will improve. (See also the report on the Stanislaus Study.)

So, what was the reaction among parents who have children with the kind of autism that would benefit from such funding? As the Globe and Mail’s Corbett Hancey reports (my italics):

“Jenn Fancy de Mena, President of the Annapolis Valley Autism Support Team in Nova Scotia thinks the funding is a step in the right direction, but worries the decision ignores older children with autism. ‘I presume they’re operating from the belief that the younger the children get therapy the better it is,’ she said. ‘Unfortunately that leaves out a whole group of kids. My son gets no money and no treatment right now.’

Ms. Lanthier of Autism Speaks acknowledges that despite new funding announcements parents of children with autism will still be going into debt to pay for treatment. She said that even funding in British Columbia, where the government provides $22,000 per autistic child per year, is not enough. ‘If you’re talking about a really multi-disciplinary, comprehensive treatment plan that includes behavior modification, speech and language therapy, occupational therapy…you could be talking $60,000-$80,000 per year.'”

 A step in the right direction? From $60,000 to $80,000 per year per child? What on earth has happened to our society when parents expect taxpayers to provide that kind of money for each and every child diagnosed with an autism spectrum disorder? Of course they will go into debt. That is a given. Because, remember, government’s can be all things to all people. They have to prioritize and take care of all children with special needs. 

For example, what about the parents who have children with juvenile diabetes, Cerebral Palsy, Muscular Dystrophy, Attention deficit Disorder and intellectual disabilities, such as Downs Syndrome? I mean, there is only so much money in any one province’s health care and social services pots, and that money needs to be shared.  In other words, it’s not all about childhood autism treatment or it shouldn’t be because there is a whole lifetime to consider!  

My son was born 45 years ago. I knew something was wrong with him in the hospital because he couldn’t suck. Then, as as soon as he could stand, the hand flapping and hand biting started.  Yet, in spite of all the subsequent problems before and after he started school,  it wasn’t until he was fourteen years old that we were able to get him admitted to an Ontario residential treatment centre where he received behavior modification over a two-year period.

Prior to that time, as with all parents, we had to pay for whatever help we could find ourselves. We both worked. We did without. We remortgaged our home many times, which was made possible simply because real estate prices continued to rise through the 70s and 80s.

So, yes, I acknowledge the importance of government funding. But, I also know, from personal experience, that scarce resources must be spent in the most effective way possible. And if that is at the pre-school level, then that is where it should go. Because, there is going to come a time — at the other end of childhood and youth — where funding of a different nature will also be required, either for supports to live at home, supervised independent living in an apartment (which is the kind of funding support my son and daughter-in-law receive at the moment) or in a specialized group home.

So, while individuals with mild autism or Aspergers can live their lives like everyone else, those with moderate to severe autism usually cannot. It’s also about the types of long-term support individuals and their families are going to need. If provincial governments started allocating $80,000 a year towards treatment for one child, say from age three to age ten, there will be nothing left when they are twenty-three and they and their families need other equally important interventions. 

Something to think about.

Endnote: I would like to point out that there are many people with mild autism that don’t feel they need any kind of health care supports, ABA or otherwise. In fact, some individuals with Asperger’s, for example, are very high functioning and extremely creative individuals. The reality is, of course, that none of us are “normal” in that none of us are “perfect.”  We all think differently. We all use different learning strategies. Some of us like using maps. Some of us like using point form lists. Some of us wear glasses, some not. So, when I refer to an autism spectrum disorder or special need, I am talking about children and adults who are like my son, unable to work in a competitive job and require constant supervision in the context of daily living, particularly with money management. Fortunately for us, our son is now quite verbal and social. But, there are also children and adults who are not only non-verbal, but have severe intellectual disabilities combined with autism-related behavioural problems. They, unfortunately, will always require 24 hour supervision — which is why I make the point that government funding needs to be shared and allocated throughout the entire life spectrum.

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