We are blogging each section of our Report and Recommendations to the Ontario Government’s Autism Advisory Committee. Read the full report here: Ontario Recommendations- Inclusion is the New Gold Standard
The problem of “feel-good” autism spending
There is an industry around autism services. Unfortunately, many in that industry are unscrupulous in seeking maximum profit by frightening parents into expensive, unsustainable treatments that have no real basis in evidence.
It is sometimes easy for them also to convince politicians to rubberstamp investments in such programs because of the “feel good” effect. This kind of spending can make a busy politician feel as though they are doing something to solve a problem without much effort or critical thinking, nor the political will to assess/audit its effectiveness. To put it colloquially, these politicians are throwing money at a problem in hopes of making it go away (or making a powerful lobby go away) until the next election. There is also the potential issue of pork barrel for some who have “treatment” centres in their ridings.
That approach to autism policy is extremely unfair to autistic people and their families, yet it has been a trend in Ontario politics. We are hopeful that our current government can address these problems and, through meaningful audits, create a better way forward.
The silo’ing of autism policy
Under the former government, autism policy was administratively siloed into the Ministry of Children and Youth, meaning little to no policy was focused on adults. The word “autism” rarely appears in provincial or federal government policies other than those targeting children and youth. The former government even used the term “pay now or pay later” suggesting that investments in programs targeting children have more inherent worth than supports for adults, (callously called the “pay laters”).
We are glad that our new provincial government is committed to autism services under multiple portfolios, a step in the right direction. This will not only reflect the reality that autistic people well,…grow up and become adulty-people for many decades, it helps to keep an eye on cheques and balances to ensure programs are running fairly, with equity across the demographic spectrum—and that they are economically sustainable.
Who Regulates ABA?
We have grave concerns over the suggestion that BCBAs strike a “self-regulatory body” to keep an eye on other BCBAs. This is equivalent to the foxes guarding the henhouse, in our view. Some self-regulating bodies can arguably serve to cover up misconduct rather than provide appropriate enforcement and we believe that is what could happen here.
There is incontrovertible evidence that the profession of ABA doesn’t just ignore abusive practices among its own members–it endorses them. For example, the Judge Rotenberg Centre, an ABA designed and run centre, has been using shock torture on autistic and IDD people, a practice which has now been banned by the FDA and is classified as torture by United Nations watchdogs. Yet the Association for Behavior Analysis International (ABAI) decided to feature the Judge Rotenberg Center (JRC) at their 2019 annual conference. As the Autistic Self-Advocacy Network writes:
“ABAI’s decision to give JRC a platform at their conference reflects a continued pattern of complicity in the torture of the very population that they claim to serve. Furthermore, the JRC’s presentation at this conference specifically focuses on the ‘merits’ of the electric shock device. This means that ABAI is more than complicit in the abuse taking place at the JRC: they are actively endorsing these practices.”
Any new regulatory bodies for ABA should be completely independent and arms-length from the industry, with no members of the industry represented in any advisory or decision-making capacity.
Oversight in Autism Services
It is crucial to have adequate oversight of funded “autism service” umbrella organizations to detect conflicts of interest, misuse of funds, sweetheart deals, pork barrel and service monopolies–as well as to assess the relevance, utility and fiscal responsibility of the programs our government is funding. Unfortunately, some organizations have profited from attaching the words “autism” or “children” to their brand as a way to avoid the type of scrutiny we expect of other businesses. Let’s put a stop to it.
On a related note, the government should ensure that all autism lobby organizations who handle money file appropriate financial statements annually, as this is currently not happening. What money comes in, and from whom, is a very important factor in assessing the recommendations of any lobby group.
We know that reforming autism services is, in part, about changing how politics works. We are encouraged by efforts in other jurisdictions, notably Scotland, to ensure that end-users (aka: autistic people) are consulted as a matter of course and measures are taken to curb any conflicts of interest. We are also encouraged by the Ontario government’s efforts to offer audits to previously under-audited areas of service. This is a good step towards ensuring that services are relevant, spending is sustainable, industry influence is curbed and conflict of interest reduced.
Recommendations
- Undo the former governments’ silo-ing of “autism services” into a single portfolio by integrating the needs and interests of autistic people into all relevant portfolios.
- Follow the lead of Scotland, who has made it law that autistic people be consulted when the Government crafts autism policy, in perpetuity.
- Financial auditing and oversight of all organizations offering “autism services” to prevent skimming, sweetheart deals, pork barrelling, price-gouging, monopoly, pseudoscience and unsustainable service models.
- Do not endorse the establishment of a “self-regulating body” of BCBAs.
- True regulation of ABA can only happen via outside oversight entities, comprised of individuals not working in the profession. Those entities should be leveraged rather than wasting resources on a new one that may only serve to stymie enforcement.
