FREDERICTON - They have spent years crying for their children, fighting for their rights and pleading for help and understanding from often indifferent bureaucracies.
Now, as they head into their golden years, the parents of intellectually disabled children are confronted with a new and frightening question - what will happen to their sons and daughters when they are gone?
This generation of intellectually disabled men and women will outlive their parents, raising significant questions about how they will be cared for when their leading advocates in life are gone.
Advances in medicine and technology mean that people with disabilities, like everyone else, are living longer, healthier lives.
The congenital deformities and illnesses that used to kill many before they reached middle age now can be fixed, and it is not uncommon to find intellectually disabled people in their 40s, 50s and older.
"What is going to happen to them?" says advocate Mike Ross, whose 27-year-old daughter Martha has cognitive delays.
"While it's a panic situation for us, for governments the question is, should a 45-year-old who is healthy and aware be put into a large institutional nursing home? For me, the answer is no. It's not a good life. To warehouse those individuals - which is the cheapest way to do it - is wrong. It's just wrong."
Ross, executive director in Fredericton of a volunteer respite organization called OPAL Family Services, says the issue has to be a concern for politicians, bureaucrats and taxpayers.
He says that within the next 15 to 20 years, governments around the world, including in Canada, are going to have to shoulder the burden of caring for thousands who are left with no means of support and nowhere to turn.
"All parents of a son or daughter with an intellectual disability are either concerned if their child is 20 years old, worried if their child is 30 years old or scared to death if their child is 40 years old," he says.
"It's a reality many of us don't want to face."
Ann Passmore of Fredericton is one of those parents who feels time slipping away and knows her family must make preparations for the care of twin sons, John and David.
Born 38 years ago, John is in a wheelchair and has the intellectual capacity of a six-month-old child. David, who can walk, albeit unsteadily, is at the level of a two-year-old.
Passmore, 65, was told repeatedly when the boys were small that the best thing she could do would be to put them in an institution and walk away.
She believes she and her husband were among the first parents to buck that trend and keep their children with them, beginning a decades-long battle as defenders of the rights of the intellectually disabled.
It has taken a toll on the petite, fragile-looking Passmore, who had a breakdown in the early 1980s and had to be hospitalized for several days.
"There are crises that develop over years and nobody hears the first cry for help," she says. "And so, really we sink into a kind of silent despair where there is no help. That's where I went around the 1980s - I started to crash."
After pitched battles with bureaucracies concerning educational opportunities for John and David, the Passmores have spent years looking for acceptable special care homes and extended care facilities - both in very short supply in New Brunswick.
Her ideal for John and David would be assisted living arrangements in specially built homes under the umbrella of an organization like a nursing home.
She also hopes to see support networks of six or more people in place to act as advocates for each intellectually disabled person - a network that could take over once the parents die or become too feeble to carry the load by themselves.
"I know of some parents who are in their 70s and 80s and some of them have children who can take over and it's all planned," Passmore says.
"Some of them have no one, some are single parents and some children out there are already orphaned. I know of one case where a sibling took over care, but after six months, they couldn't cope."
Passmore and Ross say that some provinces, notably British Columbia and Ontario, appear to be slightly ahead of the curve in caring for aging, intellectually disabled people.
In provinces like New Brunswick, chronic underfunding of special care and extended care facilities by successive governments has created a looming crisis.
Cameron Crawford of Toronto, director of research for the Canadian Association for Community Living, says governments have to ante up.
"In decades past, that was the great appeal of the large, congregate care institutions," Crawford says.
"There was a significant commitment on the part of provincial authorities to fund those sorts of places. People don't want that now, but the corresponding positioning of fiscal resources for community options has not kept pace with demand. It means pulling money out of other places and very tough policy choices for governments."
Crawford says that leading-edge organizations in the provinces, such as the OPAL group in New Brunswick, are creating the kind of coalitions necessary to push the agenda forward for the intellectually disabled.
"The parents are making noise, but we're almost past making noise," Passmore says.
"We're exhausted. Some of them have had 65 and more years of almost 100 per cent care for their kids. The government hasn't heard us for 65 years. They have a lot of catching up to do."
