In Ontario (Canada) a 2016 report Nowhere to Turn for Adults with Developmental Disabilities discovered over 14,000 adults with a development disability were on wait lists for services such as: respite, housing, job support or day programs. The wait for services, depending on the type and area is three years – 20 years!
Since writing the original 12 Wishes for My Daughter and FASD post, we met with a representative of Development Services Ontario for the in-home assessment for adult services. And we received a registration package for a service provider. We waited just over two years for access to some of her eligible funding.
In our Province they have now established that every person approved for Developmental Services Ontario Passport funding will receive $5,000 annually. Some may qualify for more but like us, you may still have to wait for more. We waited two and a half years for the $5,000. Two years after that initial funding, we received an increase, which was four and a half years after becoming eligible.
I am grateful. Despite being in the middle of a pandemic and not a lot of options, we have an increase in annualized funding that will allow her participation in much more. The $5,000 annually does not cover a lot when you live rurally and have to access services outside of your area, thus pay for transportation. Primary caregivers are not allowed to seek mileage – but we are allowed to pay a stranger or extended family mileage. That makes no sense. As long as the person is receiving service it shouldn’t matter who provides the service.
It wasn’t an easy journey these last four and a half years. There was a lot of mental health issues for the three of us because there were no supports. Sporadically we did receive some support – which was wonderful. We did have access to an FASD Key Worker until my daughter was 21, and support through a Behaviour Support Worker and briefly with an Adult Protective Service Worker. So I don’t want to say we received nothing … what we did we were grateful for. But the FASD worker ends service at 21 years of age – and they can only operate within the confines of what is available. Emotionally she provided great support and suggestions. There should be a worker however for adults. The APS worker was to help individuals with independent living skills. She wasn’t allowed to drive clients anywhere (this was pre-covid) so what was the point in having a worker to support my daughter at appointments if one of us had to drive my daughter there anyway? We might as well have just gone in. Which we did.
So there still needs to be some work on making the system more responsive to individual needs. Despite some services, I did end up having to quit my full time job that I had just secured. We only had a respite worker for 3 hours a week. There was nothing else for my daughter to do for the other 35 hours I was away from home and this put a strain on her relationship with her grandmother with them together day in and out. I’d come home from work and I was the referee.
I called the DSO 3 times over the course of the year explaining that our situation was going to reach a crisis if we didn’t get additional funding to hire a worker for additional hours to allow my daughter to participate in volunteer or employment opportunities. The second call I said we were in crisis and if nothing happened I’d have to quit. Nothing happened. Briefly I had a reprieve. I worked four days a week while I took my daughter to a 12 week DBT program. Those three months saw a great reduction in our problems because it gave my daughter another break from being at home and got her out interacting with others. I was told in no uncertain terms however that my job was full time and the 4 day a week could not be extended.
The third call to DSO was when I had quit. I indicated that although I was now at home, I needed an income so we still needed funding for activities and a worker so I could return to work somewhere else. It wasn’t until almost a year after that we received the increase. I am pleased to report that my being at home helped our situation and I have managed to secure a part time work at home contract. So for now we are holding our own. Not the case for many though.
We had a change of government in our Province in 2018. This government is not a friend or supporter of people with disabilities or anyone who isn’t a full time worker contributing to the economy. They provided a 12% housing allowance raises for themselves, but cut a planned minimal increase for disability. They cut a Basic Income Pilot project saying it was too costly and there was no benefit, yet there have been reports saying it was beneficial. They also cut an increase to minimum wage.
There has been a class action lawsuit filed against the Province for the long waits for services for adults – we registered to be part of the claim. See: $110 Million Class Action Lawsuit Filed in Ontario on behalf of People with Developmental Disabilities. Nothing has been settled.
There’s now a bill urging Ontario to amend the system so kids with developmental disabilities can smoothly transition into receiving adult supports — put forward by Windsor West MPP Lisa Gretzky, called Noah and Gregory’s Law. It still sits waiting to be passed into law.
My daughter, like so many with disabilities, can’t live on their own. Maybe one day she will. But without full support to cover workers to support her she will need to stay at home. It would be amazing if there were creative opportunities to support our adults. Like primary caregivers who were forced to leave the work force be paid to support our adults who cannot stay alone all day, and are not able to access flexible work arrangements or creative housing programs so families could create villages of support. There are some families who do fund these projects on their own, but not all families have the financial means.
We need a system of support for families because most families have to reinvent the wheel. It causes unnecessary hardships and duress expecting families to just figure it out. Some are more successful at doing this. Do they all not deserve support? I wrote an article about the duress I found myself under What happens when no one cares for the caregiver just after leaving my full time job.
My situation is not unique. The transition from child to adult services needs to be seamless and provide enough so adults with disabilities can live meaningful lives and contribute to their communities in any way they are able.
So while this wish has partly come true for my daughter (we have funding, now we need to find services), my wish is all adults with a developmental disability, including those with FASD, that require support receive the services they need when they turn 18, without delay.