Thursday, May 2, 2013

Parent despair is like a breaking dam: André Marin

Former Canadian Olympian Silken Laumann spoke movingly last night about stepparenting her daughter Kilee, 17, who has severe autism, at a BLOOM speaker event.

Silken was candid about the challenges the family has faced managing Kilee's meltdowns, which can cause her to lash out at others. She talked about losing caregivers who were injured by Kilee and said the family is fortunate to be able to afford both a worker for Kilee, and a person who acts as a bodyguard for the worker.

She questioned how parents who don't have this kind of support survive.

An investigation by the Ontario Ombudsman into over 700 complaints from parents of adult children with developmental disabilities who've been brought to their knees providing round-the-clock care to their kids suggests they don't.

This morning on CBC radio Ombudsman André Marin compared the situation of parents caring for adult children without adequate support to a breaking dam "holding back a rush of water. It can't hold the water."

He referred to a staggering number of parents in despair.

One of these is Amanda Telford, an Ottawa mother and social worker who dropped her 19-year-old son Phillip with severe autism off at a government office two days ago because she and her husband couldn't keep him safe.

"My husband and I are absolutely exhausted and medically unwell," she said, noting that her son functioned at an 18-month-old level, wandered away from the house and required 24-hour supervision. "I am not able to do this anymore."

Ombudsman Marin shared stories of parents who couldn't manage their adult children's complex needs, which sometimes included violent outbursts, on a 24-7 basis. He mentioned a mother who had locked herself in the basement and called 911 because her son was violent. She was told to call the police and he would be taken to jail, or to take him to the hospital. There were no long-term solutions offered.

Marin said many adults with developmental disabilities are living in nursing homes, psychiatric facililties and jail because there aren't appropriate living options for them in the community.

This afternoon Ontario's Liberal government tables its first budget under the leadership of Kathleen Wynne. 

Of interest will be whether the Ontario Disability Support Program (ODSP)funding has been cut, based on recommendations from a commission tasked with overhauling social assistance.

According to this article by Carol Goar in the Toronto Star, "Under the new system, there would be no distinction between disability support recipients and general welfare recipients. Under the current system, an individual receiving disability support gets $1,075 a month; an individual on general welfare gets $606 a month."

I was astounded that the Toronto Star was our only major newspaper covering this proposed change.

The ODSP is for people with severe physical or mental disabilities who are unable to work and require daily care. It's for families like the Telfords.

I messaged Carol Goar this morning to ask whether she thought the government would move on this cut. "I believe the premier has realized there’s too much opposition to any change in ODSP benefits to proceed," Goar said. "But it would be best to wait six hours and see what the Liberals actually do."

Doesn't your head spin sometimes, seeing the connections between these stories? 

Over 700 families are part of the Ombudsman's investigation and Marin suggests that's just the tip of the iceberg.

So how does it compute that we need to reduce funding support to families like these?


I think that the Ottawa family is a sad situation and all too common. I'm sure they did not do this as simply a political act but rather one borne from frustration and exhaustion. I agree we need to wait and see what happens today.... and depending on the results, perhaps a few of us could drop our adult children off with Kathleen Wynne to manage for a few days....

This issue doesn't just pertain to adult children with developmental disability but to adult children with severe physical disability as well. Who helps us parents with our child that is completely 100% physically dependant on another person for daily living? I have to work to survive ... How can I be there to look after him AND be at my job at the same time? And what about our other children? We can't look after them when all of our time is spent looking after our disabled child. There are days when I just feel like giving up ...

As the parent of a 5 1/2 year old child with signifcant devlepmental delay compounded by medical fragility, this situation terrifies me.
There are wait lists for everything and very little funding available - even worse if you don't fit a specific 'label'.
For example, we have been on the wait list for SSAH (Special Services at Home Funding) for over 3 years.
The Telford situation terrifies me (and astounds me). I don't know what or future holds, or how long our child will be with us, but I am resigned that I will be doing it alone with little to no assistance.

Louise, how can we find out about these speakers?

Thank you for this, Louise. I had no idea about the proposed reforms to ODSP. I am watching this issue and thinking tonight about what steps I might take to help advocate...

I'm just shaking my head down here in the U.S. of A., knowing that the problems are similar, if not worse. We HAVE to figure out, as a culture, how we are going to deal with these things in a civilized, appropriate way. I have to believe that it's a matter of priorities.

Hi -- The ODSP was left intact. They had talked about integrating it with general welfare. Phew!

I found it meaningful that on the way home from hearing Silken at Holland Bloorview, CBC was talking philosophy- namely about the moral obligation of us to help others in need. How this all fits together for quite a week! So much running through my head. Great inspiration from Silken. Thank you, Louise.

There is still time for more families and those who support families Like Bloorview, Geneva Centre, Community Living, Surrey Place, etc. to contact the Ontario Ombudsman Office as it is not too late. The more people who do this the more likely that the government will pay attention. The agency folks need to become involved even though they get government funding. Shame on the McGuinty-Wynne government for pretending to be doing something.