Dear Politicians: Adults In Crisis Waiting for Developmental Services

Making Political Leaders Aware

A few weeks ago my daughter and I participated in a local All Candidates Meeting for the upcoming Provincial Election in Ontario. We were joined by some new friends we have discovered through social media and our advocacy work on behalf of Fetal Alcohol Spectrum Disorder (FASD).


Voters were provided with the opportunity to submit a question prior to the meeting for the candidates. This is what I wanted to submit:

Good evening. I’m a mom to an adult with Fetal Alcohol Spectrum Disorder and I’m speaking tonight on her behalf and the estimated half a million people with FASD in Ontario.

A recent study in Toronto revealed a prevalence rate of 3-4% for FASD – the highest for any developmental disability, yet, FASD remains unrecognized and grossly underfunded. It is permanent and life long.

The Province of Ontario supports craft breweries and enjoys billions in profits from the LCBO (Liquor Control Board of Ontario), yet does very little to promote awareness or fund prevention or supports. When not diagnosed or accommodated, people can develop secondary disabilities or challenges resulting in unnecessary health, social and justice costs.

In December MPP Kiwala introduced Private Members Bill 191 to amend the Education Act to include FASD. That bill died when Premier Wynne prorogued Parliament. It was reintroduced in April as Bill 44, then died again when the Writ was dropped for the Election.

My question tonight: Will you pledge and ensure equitable support for awareness, prevention and programs across the lifespan for the half million Ontarians with FASD – and in particular will you support a Bill to amend the Education Act to include FASD as a Physical – not Behavioural – exceptionality – to ensure students  are given appropriate supports and accommodations.

This is what I was able to ask due to time restrictions:

As the leading cause and highest prevalence of developmental disabilities, yet least recognized and funded, what will each candidate pledge to ensure equitable support for awareness, prevention and programs across the lifespan for the half million Ontarians with Fetal Alcohol Spectrum Disorder – and in particular, will you re-introduce a Bill to amend the Education to include FASD as a Physical – not Behavioural – exceptionality to ensure students are given appropriate supports and accommodations.

The Candidates Respond:

Liberal Candidate: Spoke about his support of Sandy’s Law (which had nothing to do with the question) but it did show his support for initiatives that are tied to FASD. He  indicated he supported Bill 44 (formerly 191) when it was introduced so he would support it again. As an aside, this candidate was going door to door in my neighbourhood a few days after the meeting, and told me about an employment support program that just received funding.

Trillium Party Candidate: Indicated he was not fully aware of FASD, but he is committed to learning more and working with those that do to find out how we can better utilize our resources to cut out some of the red tape and bureaucracy that parents face in getting the help they need, because they need to get the help when they need it, not three or four years down the road.

PC Candidate: Unfortunate that Bill 44 died on the order paper. Echo sentiments that I don’t profess to be an expert on this issue but would certainly work with others in our community who would advise to ensure the appropriate supports and mechanisms are there in the Education System.  It is critical that we fund and invest in support early on in Education System. But also beyond 18 (years of age).

Green Party Candidate. Very concerned that FASD is considered Behavioural issue. He said his party would expand support in Education and Health for people with special needs. Would pay by reducing or eliminating some of the others stresses on other systems. Invest more in primary care so health care has funds and staff available to address these needs rather than pour all money into emergency care.

NDP Candidate: It was concerning to her that the previous government has not made FASD a priority. It should go without saying that anybody that requires support or has some type of disability or medical needs should be able to access the health care and community supports that would enable them to live the best life they can.  She would support bringing the Bill forward.

The Maiden Makes Her Voice Heard

My daughter continued her role as an advocate (picking up from when she gave a note to the Prime Minister of Canada asking for more supports for FASD), and asked the following question:


There are 73,000 adults with a developmental disability in Ontario. All funding stops at 18 and we are put on a waitlist for support and housing. Over 11,000 adults are waiting for services, and I’m one and it may take up to 20 years before I can move out on my own. What will you do about the waitlist and having to reapply as an adult?

Since I was standing up at the microphone to support her, I did not make notes on the answers. Below is a chart which states the policies each Party has put forward.

Developmental Services Party Election Platforms

What I will say is each local candidate in our riding thanked her for having the courage to stand up and ask her question. And of course, each candidate indicated that they would work to reduce waitlists and make the transition to adulthood services better. However, what are they going to say?

What I can say, is these candidates heard her. Saw her. Put a “face” to the issue. Saw that there are people behind the statistics. We need government leaders to take notice and work to stop the discrimination and treatment of people with development disabilities as an afterthought, or not worthy of support.

We were fortunate, that we had four parties participate. Many meetings only invite the “big three” (Liberal, PC and NDP), some have the Green Party but most do not have the Trillium Party. I was happy to see all four. A few of the local all candidates meetings specific to disability issues did not even have all of the “big three” – two did not have PC representation and a third had to be cancelled because neither the Liberal or PC candidate confirmed participation. It is disheartening to see that people with disabilities continue to be ignored.

The graphic below is from a grassroots movement called Ontario Developmental Disability Advocacy and Support Network (ODDASN). Note: the top part of the graphic is blurry but I cannot find this graphic on their website to reshare. It’s a great one that explains the reality and provides suggested solutions:

Ontario Adults with DD in Crisis

There are two movements right now in Ontario leading up to the Election:

Not In My Ontario organized by Community Living Ontario which calls on the next Government of Ontario to do a better job of supporting people who have an intellectual or developmental disability, their families, and the community organizations that assist them. Click the name above to visit the site and sign the petition.

Not In My Ontario

My Vote Counts a grassroots movement encouraging people with developmental disabilities to vote (and to take a picture using the hashtag #MyVoteCounts) to let the politicians know their vote counts. I like this campaign; they have a Twitter and Facebook profile, however a search on the hashtag returns different campaigns with the same name …. it would have been better to set it apart by adding “In Ontario” or something more descriptive (which I suggested), as it is difficult to find on either social media platform. The link above is for Twitter.

It is important to note that while FASD is considered in some circles as a Developmental Disability, not every person with FASD is diagnosed with an Intellectual Disability (which provides access to developmental services); however they do require many of the same supports (and some unique to FASD) to provide them with the best quality of life and participation in their communities.

More Than One Developmental Disability

The only way we will make change is if we make noise. It can be quiet conversations, it can be social media postings, it can be questions to political leaders at All Candidate Meetings and it can be demonstrations – but we cannot remain silent. Anyone touched by FASD or another developmental disability needs to ask questions and keep leaders accountable. It is the only thing that will result in change.

I discovered after writing this post, this quote from a parent of a child with a disability:

We all of us face the same challenges just with different contexts. Lack of funding, lack of understanding, fighting the system, fighting for rights, fighting to break down barriers. How much louder would our voices be if we joined as one.

FASD and developmental disabilities are not a partisan issue.

Not In My Ontario Exhausted

The Election is a week away. FASD is not specifically on the Agenda for any political party. With half a million people with FASD in Ontario, it should be. Seeing the struggle the developmental services sector has had to get their voices heard, it will be a long road ahead. However, without bringing our stories forward, there will be no change.

I will continue to advocate for fetal alcohol spectrum disorder to bring it forward onto the mainstream agenda because it needs to be recognized and addressed. Until it is recognized as a whole-body disorder and disability, people will not be provided with access to important services and supports. FASD needs strong voices and advocates.

I will also advocate on behalf of developmental disabilities as a whole. It’s a fine balance between working toward recognition for one for inclusion while not isolating but advocating inclusion for all.

This week, the week before election, is National Access Ability week. A great opportunity to ask candidates where they stand on inclusion. Where will they stand when elected? We need our political leaders to step up and realize diversity builds healthier communities and stronger societies.

Next week, if you are in Ontario, you need to step up, and exercise your right to vote for the party you feel best represents your interests. And if none do, then keep advocating until they respond! Just because something isn’t in their platform today, doesn’t mean it can’t be added or addressed after the election!