'Who will replace me?' Parents caring for children with intellectual disabilities worry about future

Lindsey Legere's son Aidan Peters was eight years old when he was diagnosed with high-functioning autism. 

He's now 15 and Legere says as he gets older, he wants to be more independent. She said she worries what Aidan will do when she's no longer around. 

"My main concern is when he gets older and I'm not here, who will replace me?" she said. "I can only support him for so long."

It's a concern many parents who have children with intellectual disabilities share and the subject of a recent research project from the P.E.I. Association for Community Living. 

A 'forgotten' population

While Legere was not part of the study because she's not considered a senior and people who have autism weren't included, she said it gives her a glimpse into what her future may look like. 

"If I'm gone, I kind of worry that he won't be able to tell whoever is looking after him what it is that he needs," she said. "He has that social anxiety."

"I would definitely like to know that there is someone there that's going to try and step in and take my place."

The research project led by Pat Coady started in June and finished this month. 

Coady worked for the association for 30 years and was also a parent of a daughter with down syndrome who died at 27.

'Demand is getting higher'

Coady said the PEIACL wanted to identify the number of P.E.I. seniors age 55-95 who are caregivers to children over 21 with intellectual disabilities. 

While it's not an exhaustive list, Coady said, Island-wide she identified 166 families caring for 189 children with intellectual disabilities. Some families had more than one child with a disability.

"Every parent I talked to were not complainers. They are very, very concerned where their sons and daughters are going to go when they are no longer around," she said.

Coady also pointed out the unique challenge that seniors face as primary caregivers.  

"The senior parent's health is deteriorating as one would expect with age. Their financial ability to provide is lessened because most of them are now pensionable people."

If my daughter were alive today I would be on the list — this is why I can identify with those parents so well.— Pat Coady

The last time Coady created a similar project was in 2003. She said the numbers she gathered this time around doubled. 

"It shows that our population is increasing, the demand is getting higher and the supports and resources are just not available."

Coady said supportive housing and more primary care workers are needed to address this problem for a population she calls "forgotten."

"A lot have gotten discouraged because they've asked a number of years ago about a residential placement and all they've been doing is [being put] on list after list."

'A storm brewing'

Coady said she can relate to senior parents because of her own experience.

"If my daughter were alive today I would be on the list — this is why I can identify with those parents so well."

"They just want to continue to do it as long as they can which is admirable for sure," she said, adding, "nobody has eternal life."

Coady said since she started compiling the information, two parents from her study have died. Family members often step in to help but she considers this a band-aid solution. 

"It's always great to have the extended families' support because they know the individual. However, it is a big undertaking for a sibling to look after a disabled sibling and a lot of parents don't want to ask or expect that a brother or sister will take that on."

Coady said if action isn't taken soon, the problem will only worsen. 

"There's a storm brewing because if I have 189 individuals and say, 10 of those caregivers got sick tonight or over the weekend, there's no place for those 10."

Workshops planned

Grace Kimpinski, the communications and fund development manager with the PEIACL said the group is planning workshops to address the needs Coady identified.

The first is planned for October 24 in Montague and will include information on financial planning, housing, transportation and health care.  

Kimpinski said the plan is to also bring this information to the provincial government.

"We want to help them understand just how dire a situation this is for some folks."

"We're hoping that the future is a lot brighter for senior parents who are raising their sons and daughters at home right now."

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