Re: Investigation of province's services for adults with developmental disabilities in crisis

TORONTO, Dec. 3, 2012 /CNW/ -

December 3, 2012
Ombudsman Andre Marin
Office of the Ombudsman of Ontario
483 Bay Street
10^th Floor, South Tower
Toronto, ON
M5G 2C9

Dear Ombudsman

Re:  Investigation of province's services for adults with developmental disabilities in crisis

On this International Day of Persons with Disabilities, Community Living Ontario, speaking on behalf of people who have an intellectual disability and their families and Community Living associations across Ontario, welcomes the investigation into Ontario's services for adults with developmental disabilities in crisis.  We also ask for an opportunity to meet with you as soon as possible.

CBC's The National profiled two families' stories recently. They are newsworthy because they represent the situation faced by hundreds of families throughout Ontario.

There are many people who have an intellectual disability who are waiting for services.  The waiting list for supports is over 10,000 -- over 7,000 for the Special Services at Home (SSAH) program and about 3,000 for the Passport program.  And the waiting list for residential care is even longer.

With community supports people can live in their own home or apartment, but for those who require intensive support there is no more room. Existing group homes are often beyond full.

More than 80 per cent of adults in Canada with disabilities who require support have it provided by family members. But without the needed supports these are people who are thrown into crisis. Such as the woman who lives in poverty because she cannot work to provide for her family because she has to be with her daughter who is in a wheelchair and needs constant care.  And the case of the recent high school graduate who is home alone all day without any support because both parents need to contribute to family income.

Supports and services for people who have an intellectual disability are chronically underfunded.  Community Living associations across Ontario have had their funding frozen at 2009 levels as governments clamp down on spending and have changed the system to require approval through Developmental Services Ontario.  Even if the local Community Living association had a vacancy, under this system, they have no flexibility to respond to families in urgent need.

The systemic problems cannot be corrected through simple adequate oversight of transferred funds and exercising more controls and accountabilities. Agencies simply don't have the power or the funds to provide the needed services but end up being blamed for not providing services.  Meanwhile families are driven to the breaking point. If they surrender their family member to the system, the Office of the Public Guardian has no more choices than the family had. So, the repugnant act of placing a young adult in a long term care facility, perhaps in another town, becomes a real prospect.

Families are most likely to need support when the economy is not going well. Agencies that support families have to be flexible.  Unfortunately, governments that are financially stressed tend to view flexibility as waste and residential spaces held in reserve for emergencies as inefficient. But when every space is filled, one more family crisis throws the system, with no capacity to respond, into crisis as well. That is what we are seeing - no capacity to respond when families cannot go on any longer.

We can reasonably predict that the situation will get worse before it gets better, if for no other reason than the demographics of our aging population. We have had at least 30 years to see this coming, and now that it is here, we are not ready.

Aging families are facing grim decisions with a sense of dread not felt for generations. Governments across the country are in denial. Governments place the responsibility of caring for adults with intellectual disabilities on the backs of their families to an extent far beyond the capabilities of many of those families.  Advocacy organizations that have been speaking out are treated as selfish interest groups demanding public money for private causes.

"We need a new deal. What is happening to families is unfair, unsustainable, and unconscionable," says Rick Strutt, vice-president Community Living Ontario. The two CBC stories are only a sample of similar stories that have made local news in Ontario this year. "They are the tip of the iceberg. Most families in desperate circumstances tend to keep a low profile. They are reluctant to do anything that might offend those who hold power over how scarce public resources are allocated.  Many are seniors living in uncertain times who have no appetite for a fight with the government. Parents love their children and they are willing to sacrifice, but when governments exploit that love to meet a fiscal target, we need a new deal," continues Strutt.

There comes the time when a person or a family simply runs out of choices. That time has come for one of the families documented by CBC. It will come soon for many more. If things don't change, it will keep coming for a generation because the demographic wave headed our way will not be deflected by political maneuvering and sleight of hand.

Community Living Ontario looks forward to the opportunity to meet with you as soon as possible.

SOURCE: Community Living Ontario

Sheila Kirouac, Communications Director
Community Living Ontario
416 447-4348 ext. 223
Cell:  416 316-1587