As developmentally disabled people outlive their families, we need to boost the availability of health and social services and support sibling caregivers.

(This article has been translated into French.)

A combination of better medical care and good lives in the community has led to longer life expectancies for people with developmental disabilities — that’s a good news story. But many are now outliving their parents, who have taken care of them over their lifetimes.

Once parents are no longer able to provide the same level of support or care, the caregiver role often goes to the sibling of the person with a developmental disability. In many cases, the sibling makes this transition alone — without supports or adequate resources — and it generates considerable stress.

Siblings have the longest relationship with their brothers and sisters with developmental disabilities, and they are likely to be the most constant companions in their lifelong journey. Yet very little is known about the needs, challenges and experiences of the typical sibling caregiver throughout the lifespan.

Through our work with the Sibling Collaborative, a group committed to connecting siblings of persons with developmental disabilities and strengthening families, we recently undertook a survey — the first of its kind in Canada — targeted at these adult siblings. In a few weeks, we had over 360 responses from across the country. Our published report, Understanding the Sibling Experience, lays out recommendations for the developmental services sector, governments and even families to better understand the sibling caregiver experience.

Not surprisingly, the survey results illustrate that, overwhelmingly, siblings expect the level of support they currently provide to their brother or sister with a developmental disability to intensify over time. Many identify the aging and eventual passing away of their parents as the primary reasons for the increase. As one respondent shared, “My parents are still alive, but [aged] 90 and 93. Mother still has control but can’t handle too much any longer.”

That 45 percent of Ontario adults with a developmental disability are also diagnosed with a psychiatric disorder is not lost on siblings. Among survey respondents, mental health clearly emerged as the top challenge they face in their role as supporters. Not only are they concerned about the mental health of their brother or sister with a developmental disability; they also see mental health challenges in their parents. Concern for their own need for emotional support ranked farther down the list.

A key recommendation that emerged from our study is that the developmental services and mental health sectors, along with publicly funded social and health services, should provide mental health supports that are specific to persons with developmental disabilities and their families. What’s more, we suggest that mental health care be established as part of the system of supports for persons with developmental disabilities from the early stages — and that it continue throughout their lifespan. This support also needs to be made available for sibling caregivers to ensure their resilience, compassion and wellness over the long term.

People relying on disability support programs across Canada are living in poverty. To address this, a report recommends a comprehensive national funding approach to ensure Canadians with a disability are not at risk of becoming impoverished.

Siblings were also asked in our survey what they need in order to support their brothers and sisters with developmental disabilities. The top areas mentioned were housing options, securing government funding and managing personal finances, as well as help in finding and managing paid supports.

Siblings lamented the long waiting lists for affordable housing and the red tape of government programs intended to provide support. Funding and finances were of significant concern to respondents who anticipate taking over responsibility for their siblings at some point in the future and potentially adding to their own financial pressures.

People relying on disability support programs across Canada are living in poverty. To address this reality, our report recommends a comprehensive national funding approach to ensure Canadians with a disability have financial safeguards so they are not at risk of poverty, such as a guaranteed annual basic income for Canadians with disabilities. Other recommendations include a refundable disability tax credit and improvements to the Registered Disability Savings Plan.

Although siblings of persons with developmental disabilities do not tend to connect with others in similar situations until well into adulthood — if at all — our survey revealed the majority are looking for ways to connect with others outside their families, to share experiences and access helpful resources.

Our study demonstrates that if we want to ensure the long-term well-being of persons with developmental disabilities, we need to pay attention to, include, support and invest in their siblings as part of publicly funded health and social services and planning. Disability supports, in other words, are a “family affair.”

Illustration: Shutterstock, by Valenty.


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