Source: The Toronto Star [Letters to the Editor]

Families told us loud and clear, following last week's story "Nowhere else to turn," that nursing homes are not the answer for young adults with developmental disabilities. A few of the dozens of letters we received:

Individualized support lets daughter lead full life
I am haunted by memories of the nursing homes my husband and I naively visited in the early 1980s. Our pediatrician suggested we consider one for our daughter Nancy, then aged 5, whose physical and developmental disabilities were deemed too challenging. Our gut reaction to these distant, isolating, loveless settings made us develop a different approach to "sharing her care."

Nancy was able to grow up with her three younger brothers and, through her school years, spent two nights each week in a community co-op apartment suite, an innovative program organized by what is now New Visions. Special Services At Home, the direct-funding program of the Ministry of Community and Social Services, introduced us to a small amount of funds and support personnel for Nancy.

Today, at 31, Nancy is a fully participating citizen with a number of valued roles in the community. Individualized support, based on a plan developed by her network of family, friends and supporters, with a personal budget funded through OPTIONS of Family Service Association, enables a dependent young woman to live the life we think she would choose. A medical model of care, as offered in long term care centres, is the wrong approach.
Christy Barber, Director, Family Alliance Ontario, Toronto

Setting inappropriate for developmentally disabled
As the mother of a developmentally disabled 12-year-old son, I was absolutely horrified by Trish Crawford's story.

Though at least superficially aware that the Ontario government had been closing regional care facilities, I had no idea of the horror that is to come. Being the parent of a developmentally disabled child can be a heartbreaking, exhausting life. The thought of my son one day living with the frail and dying elderly will now haunt me.

I am so proud of my son's every small accomplishment. He is, as one friend termed it, "100 per cent soul." How can I keep putting one foot in front of the other when I now know that the Ontario government is quietly shuttling off the developmentally disabled to such a wholly inappropriate setting? What happens to him when something happens to me? As a society, should we not be judged by how we care for each other, especially those who need our protection?
Andrea LeBlanc, Trenton

Frustrated parents start fundraising campaign
Bravo Trish Crawford. Now in our 70s and diabetic, with my wife battling cancer for the third time, we have been frustrated waiting for an acceptable housing solution for our 47-year-old daughter. A bunch of equally frustrated parents in Northumberland County, with an initiative from Community Living Campbellford/Brighton, have created a non-profit corporation, Keystone Community Supports. A $5-million fundraising campaign has been mounted to build five Keystone House facilities for both the long- and short-term needs of challenged children of aging parents like us. Let's hope we will finally see the results which have for so long eluded us.
William Johnson, Baltimore, Ont.

Sister's spirits declined during nursing home stay
I can directly relate to Trish Crawford's story last Friday. My younger sister Jessica, 23, has Lennox Gastaut Syndrome, a rare but severe seizure disorder.

Jessica lives in our family home. We have accommodated her living needs to include a cozy and attractive safe room that has Plexiglas over the window, a carpeted floor, padded walls and a mattress in the event of a seizure (when Jessica usually drops to the floor). However, there have been a few accidents and, two years ago, Jessica fell and broke her ankle. In a cast for five months, my family's care and home were not enough for Jess and she was placed in a nursing home for three months.

Although I am grateful for the support of this facility, my sister spent most of her time sitting in her wheelchair, in the hallway, unstimulated and out of place. I want to take care of my sister forever, but my family and I have to plan in case that does not happen.
Michelle De Buono, Woodbridge

Most families love and take care of a family member with such challenges but it does take a toll on the aging caregiver.

There needs to be better governance on this issue. We do not need more reports or consultants. Ask the caregivers and people who work at the field level what is needed and they can tell you. None of this is that complicated. We need some political will on this issue before we see any changes.
Janet Lumb, Toronto