Aging caregivers of children with disabilities pushed to the breaking point

Carlo is in a wheelchair thanks to a condition called myositis. Now that he’s nearing 50 and “almost non-mobile,” he receives home care and lives with his parents who help take care of him. But that’s becoming more difficult: his father has cancer, and his elderly mother has her own health problems. “My mom helps me as best as she can, but she’s pushing 80, she has diabetes,” he says.

Louise Drover kisses her son Graham, who has Angelman Syndrome, at their home in Blaketown. Paul Daly, Canadian Press

By Vanessa Milne, Sachin Pendharkar & Maureen Taylor, Healthy Debate April 7, 2016

He has no siblings and little other support. He’s not sure what will happen when his parents pass away. “I’m sure in a pinch I can get help, even just for a few weeks,” he says. “We’ll cross that bridge when we get there.”

Many adult children with disabilities now live in the community, and are likely to outlive their parents. The push for home care over the past several decades has allowed people who might previously have lived in institutions to stay at home, most notably people with developmental disabilities.

This is a positive shift, as community-based care is more cost effective than institutions, and it’s also preferred by people with chronic health conditions or disabilities. But major cracks have appeared in our system, with clients not getting enough access to respite, supportive housing or home care hours.

In many instances, family members have stepped in to fill the gaps, becoming the de facto front-line health care providers. “It’s often assumed that people with long term chronic conditions have their needs met through primary care, community based mental health, or disability support services, and that families pick up around the edges,” says Michael Bach, executive vice-president for the Canadian Association for Community Living. “But 75% rely primarily on family care.”

So what happens when we all cross that bridge – when those caregivers, many of whom are Baby Boomers, become too old to continue to look after their adult children?

One thing I have learned from my sandwich caregiving experience is that I cannot do it alone. If I want to give good care to my family, I must share the care and I must do it efficiently and strategically. That’s where Tyze comes in. I have a Tyze network for Nicholas and another one for my Mum. The two networks look very different. Nick’s Tyze site has a fairly large network consisting of his paid care staff, our General Practitioner and our family. My Mum’s site is just me, my sister and a couple of paid, part-time helpers. Tyze is an online tool that brings people together around someone receiving care.

Families stretched thin

The number of adults in Ontario with developmental disabilities is growing, and their health needs are higher, because they develop age-related issues, like frailty, up to 30 years earlier than the general population. That’s increasing the pressure on our system.

“People with developmental disabilities are living longer, productive lives in which they are fully included in their communities,” says David Jensen, communications officer for the Ministry of Health and Long-Term Care. “More need our support out in our communities, along with their families and caregivers.” In response, the Ontario government announced in 2014 it would invest $810 million over three years into developmental services.

Ideally, aging caregivers would be able to lean more heavily on developmental services and home care for support when they’re unable to provide the same level of care as they used to. (People with developmental disabilities receive services both from the Ministry of Community and Social Services and from the Ministry of Health and Long-Term Care.) Unfortunately, both systems are stretched thin.

A 2014 Ontario report from the Select Committee on Developmental Services “heard repeatedly that individuals and families who need developmental services and supports are in crisis. We heard that after struggling to obtain services and enduring waitlists for years, many families feel pushed to the brink of disaster.”

In the most extreme cases, families who have been unable to stitch together a solution have left their adult children at the doorsteps of government offices or at emergency departments. There are no Canada-wide numbers on this, but between 2001 and 2013, 44 people over 11 were “abandoned” in Ontario’s Peel and Halton regions alone.

Concerned about situations like these, and “a surge in complaints to our Office about urgent, disturbing cases where adults with severe special needs were ending up in jail, homeless shelters and hospitals, because no care or services were available for them,” Ontario’s Ombudsman is investigating the services available for adults with developmental disabilities.

His 2014-15 report said 1,300 complaints had been received and found that parents are frustrated that adult children who are living on their own don’t have access to adequate assistance. “We continue to receive complaints from families of adults with developmental disabilities who have been placed in hospitals or psychiatric units while they wait for an appropriate residential placement – sometimes for weeks or even years,” the report reads.

The home care system is also widely acknowledged to be inadequate, with long wait times and inconsistent service depending on client’s locations. Ontario’s home care system is a target for reform under Minister of Health and Long-Term Care Eric Hoskins. A government discussion paper on the subject released in December reads, “Some families find home and community care services inconsistent and hard to navigate, and many family caregivers are experiencing high levels of stress.”

A report out just this week from Health Quality Ontario also found that 33% of primary caregivers in 2013/14 “expressed feelings of distress, anger or depression or were unable to continue providing care,” more than twice as many as did in 2009/10.

Looking for long-term answers

The Select Committee on Developmental Services interim report identified the lack of supportive housing as a key issue to caregivers. “Aging parents are pushed to the breaking point of physical and emotional exhaustion as they continue to care for adult children at home,” it reads.

“It is likely that growing numbers of people with developmental disabilities will outlive their parents and require supportive living arrangements in the community,” it continues. “Aging parents worry that when they die or become incapacitated, their grieving child will be abruptly moved away from their home and community…”

The report says respite care – which many parents describe as a “make-or-break” service – is also limited. Respite care allows parents to care for their children for longer, and it can also be used as a transition to having others care for adult children.

Families in Ontario can also apply for individualized funding through the Passport Program, which lets people with developmental disabilities decide how to spend their money on supports and services. It also includes more residential options for adults with developmental disabilities and urgent needs.

“Different things work for different people,” says Yona Lunsky, a clinician scientist at CAMH who studies the health of people with developmental disabilities and their families. “For some people, having individualized funding might be one way to do it. For others it might be much easier if a community agency is responsible for all the care,” she says.

But over time, inadequate funding has left us with a “reactive” system, Lunsky says. The system prioritizes families in crisis – including those who have an ill caregiver, or whose caregiver has died. And that makes it hard for parents to plan ahead. “We’re often having to deal with the most complex difficult cases in a very reactive manner, and we’re so busy focusing on that that we can’t go upstream and offer more support to families, such as respite or support, to prevent crises,” she says.

“Twenty years ago, people would put an individual’s name on a list when they were young,” says Keith Tansley, executive director of Community Living Mississauga, which supports people with intellectual disabilities. “Maybe it’s 20 years until they get into a group home, and during that time we could work with the family, help the person develop skills.” But families today don’t tend to get access to services until they’ve been prioritized because they’ve reached a crisis point.

Because of that, people can end up in hospitals or long-term care homes for the elderly. In the worst-case scenarios, they can eventually be homeless or in jail. “We’ve heard of people coming to the attention of services for the first time after their parents had a health crisis or even after have died,” says Lunsky.

“The non-senior disabled community and parents of children with disabilities do not favour placement in long-term care homes,” reads the Canadian Healthcare Association’s report on Facility-Based Long-Term Care. “Still, there are younger disabled persons residing there, often inappropriately located in environments with confused elderly residents.”

Instead, the transition away from parental care would ideally be a staged process, where adults minimize their dependence on their parents as other services are put in place. “We have to get better at creating networks of community based support, formal and informal, paid and unpaid, so that as parents age out of being able to provide support, people don’t end up being in either crisis or long-term care facilities,” says Bach.

“We rely on families to be the front-line of care and as they reach their limits, far too often, people end up in the wrong places.”

Vanessa Milne, Contributor

Vanessa is a freelance health journalist and a form staff writer with Healthy Debate.

Sachin Pendharkar, Contributor

Sachin Pendharkar is a respiratory and sleep doctor and an Assistant Professor of Medicine and Community Health Sciences at the University of Calgary.

Maureen Taylor, Contributor

Maureen Taylor is a Physician Assistant who worked as a medical journalist and television reporter for the CBC for two decades.

Source Healthy Debate