WHAT WILL HAPPEN TO NORA WHEN THEY’RE GONE?
Growing number of seniors confront the physical and emotional challenges of caring for adult children with disabilities
Dallas and Ardith Hinton have been worrying most of their married lives about who will care for their daughter when they die.
They want 30-year-old Nora — who has Down syndrome, mobility issues and impaired vision — to thrive after they are gone.
The Kerrisdale couple, retired teachers, have spent decades planning for that day. It has been an arduous task. After Nora was born, Ardith took an extended leave to care for her. Ardith’s leave never ended.
Then, when Nora had a stroke at age 16, Dallas took early retirement so Ardith wouldn’t have to care for Nora on her own.
Dallas, 70, and Ardith, 71, continue to provide Nora with roundthe-clock care today.
“It’s exhausting us,” Dallas said. “But you put one foot in front of the other and you go day by day, because you don’t have a choice.”
In 2012, 22,000 caregivers in B.C. over the age of 60 were looking after children 20 and older with a disability, according to Statistics Canada.
The Hintons are among a growing number of B.C. seniors struggling to provide care at home for adult children with developmental disabilities, including autism, cerebral palsy and Down syndrome.
“We’re now getting to the point where we’re getting older and, you know, things like this cold weather get us down more,” Ardith said. “How much longer can we keep this up? We want to have some mechanism in place so that if one of us gets seriously ill or dies, there’s someone else who can look after her.”
Confronted with this reality, the Hintons sought help 20 years ago from the Planned Lifetime Advocacy Network, a non-profit agency that helps families with a child with a disability to build a network of caring relationships, plan finances and secure longterm housing and support.
“This is an unprecedented time for people with disabilities,” said Rebecca Pauls, director of the agency. “It’s the first time that people with disabilities are growing old in the community because prior to the ’80s and early ’90s, most people with disabilities were forced to live in institutions.”
The agency’s seven mentors work with 67 clients with disabilities, about half of whom are older than 40. Typically, they’ll first meet the whole family around the dining-room table before spending four to six hours each month building support networks made up of neighbours, community members and “people with a common interest,” Pauls said.
Families pay $200 a month for membership. Mentors also help families attend will, trust and estate workshops.
Parents link with each other so “family advisers” can share their own experiences.
“It’s one of the things that families worry most about — parents in particular.”
— JACK STYAN COMMUNITY LIVING B.C. VICE-PRESIDENT OF STRATEGIC INITIATIVES
“The isolation for parents can be huge,” Pauls said. “Especially as they enter into their own challenges with aging, their own challenges with housing, their own challenges with Alzheimer’s.”
Planned Lifetime Advocacy Network also helps families with funding. In 2008, after lobbying by the agency, the federal government established the Registered Disability Savings Plan. The government pays a matching grant of up to 300 per cent along with a bond of up to $1,000 a year to low-income people with a disability.
Pauls said the agency has dealt with crisis situations involving families unable to access the “diminishing resources” of Community Living B.C., a provincial Crown agency that funds support and services for adults with developmental disabilities and their families.
“Most of our families live with perpetual stress,” she said.
Community Living works with 18,900 clients. In 2012, about 23 per cent of them were over 50 years old.
In the next five years, the agency expects the number of people aged 45 to 64 using its funded services to increase by 14 per cent.
In 2013, the agency began developing a comprehensive strategy on aging. Jack Styan, vice-president of strategic initiatives, said Community Living B.C. connected with more than 1,000 people, families, service providers and community members, and the health ministry, to look at how the agency will support a growing number of older clients.
“It’s one of the things that families worry most about — parents in particular,” Styan said. “Most of us who have kids, we can anticipate and support them to become independent and when we’re not around any longer, they can take care of themselves. It’s not the case for this group of families.”
Styan said Community Living predicts a bump in the number of families in this situation.
“Every year, there are a few families who come to us when they’re quite a bit older, and we hadn’t known them before, and often health is a precipitating crisis in that instance,” he said. “If it’s one or two parents and one of them has a serious health issue, then their ability to continue to care is obviously significantly diminished and we need to step in much more quickly.”
“This aging demographic is a real, profound concern for us,” said Alanna Hendren, executive director of the Developmental Disability Association.
“We have had a few situations where some of our more senior clients started coming in looking not that great,” she said.
“Upon inquiry, the staff found out that they went home the day before — HandyDart dropped them off — and mom was lying on the floor and she wasn’t moving. And so they don’t know what to do, so they’ll try to wake mom up or just be confused and not know what’s going on.”
Hendren said often when a person with a developmental disability calls 911 after a parent’s death, they’ll end up “with a trip to the psych unit” because there’s no plan in place.
“In that very short period of time, you have lost the one person in your life you could rely on, you’ve lost your home,” she said. “In many cases, you lose the social network of the parent and you don’t know what’s going to happen to you — now imagine.”
The association’s family support worker meets with aging families, encouraging them to prepare representation agreements, write wills and form plans with family and friends. Staff check on aging parents to ensure they’re fit to provide continued care.
But Hendren believes there’s a disproportionate number of affected families in the association’s service area — Vancouver and Richmond — and she laments a shortage of government funding for Community Living B.C.
“With that aging baby boom, you’ve got overburdened long-term care facilities, overburdened government services, even transportation and things like that,” she said. “It’s a difficult time.”
Disability Alliance B.C. is increasingly working with people with disabilities of all kinds who rely on care from aging parents, said Sam Turcott, director of its advocacy access program.
The alliance helps families enrol for the Registered Disability Savings Plan and access government disability assistance. But Turcott said clients complain payments are becoming “increasingly insufficient” to meet housing and care needs.
“I really support additional measures being taken by government to ensure that disability assistance rates are commensurate with the realistic cost of living in the province,” he said.
The average payment for a single person with disabilities is $983.42 a month, including the maximum shelter rate and transportation support allowance.
Dallas Hinton calls this amount “absurd.” Each year, Dallas and Ardith scrape together an additional $20,000 from their pensions to cover Nora’s living costs and replacements and repairs for broken-down wheelchairs, lifts and occupational and physical therapy equipment.
The Hintons have set up a testamentary trust for Nora so that when they die, trustees can decide what to do with the family’s estate.
But they worry about where Nora will live.
Ardith said it would be difficult to move Nora from Kerrisdale, where the community looks out for her, recognizing her by her motorized wheelchair flying a Canucks flag. At the local Starbucks, friendly baristas know Nora’s name and order.
As both parents age, they may not be as mobile or able to drive. This is problematic, as Nora likes to walk up and down the steps of the local church, attend hydrotherapy, visit the library and play in a band in the community.
The Hintons considered moving to the Fraser Valley, but it’s too far from the medical services on which Nora depends, they said. Ideally, Nora will move in with a local family able to provide her the care she needs — a home share.
They’re working with non-profit Spectrum Society for Community Living to explore potential housing options. They’ve also connected with non-profit Vela Canada to access additional funding from Community Living.
Dan Levitt, an adjunct professor in the gerontology department at Simon Fraser University, advocates a policy change that bolsters support for seniors and other vulnerable groups as a growing number of them seek housing and care.
Isobel Mackenzie, B.C.’s seniors advocate, said her office is talking to Community Living about how to help the growing number of seniors caring for adult children with developmental disabilities who are living longer.
“I think planning for the future and getting supports so that (aging parents) can continue for as long as possible in their caregiving role is something we should be striving for,” she said.
Finding the right caregiver may be the greatest concern for the Hintons. Since Nora’s stroke, she’s been in rehabilitation with a therapist.
But long-term, she’ll need roundthe-clock attention from caregivers. They will have to prepare her meals, taking care to cut her food into small pieces because she has trouble swallowing, and will need to help her dress, bathe and use the washroom. And they must work around Nora’s delayed sleep-phase syndrome — most days she goes to bed around 5:30 a.m.
Dallas has spent hours filling a journal with instructions for the person who assumes this role after he and Ardith are gone.
“We’re not expecting somebody else to just take over everything,” said Ardith. “But, realistically, there’s going to come a time when somebody else will have to do the best they can because we won’t be here.”