My letter to candidates:
I am writing to draw your attention to the Medicare for Autism Now campaign. Their website is http://www.medicareforautismnow.org/ The campaign is advocating to include Applied Behaviour Analysis (ABA) therapy under medicare, as they believe that it is a medically necessary intervention for Autism. I understand that they have been writing all candidates, asking of their support. I urge you to not support this endeavour.
I am strongly opposed to this campaign. I cannot state strongly enough how much I do not want ABA therapy covered by medicare.
I believe that every child affected by autism should have quality therapy available to him or her. However, there are several problems with their campaign.
- The only therapy they want to see covered is ABA therapy. They actively oppose any other therapy from coverage. Should medicare cover ABA, other therapies would be out of pocket for parents, and that would be highly detrimental to children who do not thrive in ABA.
- ABA therapy is already considered the “gold standard” treatment, a sentiment I disagree with most strongly (see below). Doctors already recommend it, and are less than supportive of any other therapies. This is a problem.
- ABA is explicitly decried as abusive by autistic adults who were put through it.
- Parental choice would be removed as governments would remove funding in place for other therapies such as Floortime, Relationship Development Intervention, and Son-Rise. Proponents of Medicare For Autism Now claim these are not scientifically backed. This is untrue. For example, see Houghton, et al (2013) here: http://www.sciencedirect.com/science/article/pii/S0021992413000518
- ABA is not scientifically sound. The studies that prove its efficacy are out of date and used “aversives”, i.e. punishments such as shocks, slaps, etc., which are thankfully not used any more.
- The goal of ABA is full, unassisted integration into the school system, for which they claim a 1 in 4 success rate (without substantiation, I might add!). Dismal goal. Dismal success rate.
I recognise the very great need for good therapies for autistic people. None of the provinces fund it properly. BC is by far the best, and it’s severely lacking. Kids are going without good treatment, and in many provinces the only funded programs are ABA, run by governmental agencies. It truly is a short-sighted disgrace.
BC provides parents with $22,000 for kids under 6 and $6000 for children 6-18. Parents can have providers bill the government for up to those amounts. There are all sorts of problematic restrictions, and the $6000 is a bit of a joke. $500/mo buys one hour of speech, one hour of occupational therapy, and 10 hours of behaviour intervention. If you’re lucky. Apparently the school is supposed to provide the therapies needed, but that doesn’t happen. My non-verbal child runs away, eats non-food items, and is drawn to water, doesn’t qualify even for a full-time aide, never mind any therapies. Our family spends about $12,000 per year out of pocket for aides and other therapies. Most families cannot do that. Given the rate of autism is now officially 1 in 68, this is going to be a major problem when these children become adults who need full-time care.
I propose an alternative to the Medicare For Autism Now campaign. Rather than funding ABA and only ABA, adopt the BC model under the medicare system, because Autism is, at least in part, medical. Provide parents with a billing number and allow them to hire therapists and behaviour interventionists of their own choosing as contractors who invoice the government for their services. Have the wages of the therapies be set so that parents are protected from dishonest providers who would overcharge. Set up a cap per year, but allow parents to roll over what they don’t use. Don’t end coverage at 18. Autistic people aren’t magically no longer in need of services when they become adults. This would allow parents to choose their therapy, choose their therapists, and have control over the spending. No one would be coerced into ABA because of lack of alternatives or funding, but it would still be an option for those who choose it. It would save money in the long run because when children get good early intervention, they require less adult care.
Thank you for your interest. I hope you will see how this project, though well-intentioned, will cause more harm than good to the people it endeavors to support.
Luna's Legal Name