A combination of better medical care and good lives in the community mean longer life expectancies for individuals with a developmental disability. That’s good news. But many are 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 transitions to a sibling of the individual with a developmental disability. In many cases, for the sibling, the transition of caring roles is often made alone – without supports or adequate resources – and generates considerable stress.
Siblings have the longest-lived relationship with their brothers and sisters with a developmental disability, and are likely to be the most constant companion in their lifelong journey. Yet very little is known about the needs, challenges and experiences of the typical sibling in these circumstances.
Through our work with the Sibling Collaborative, a group committed to connecting siblings and strengthening families, I and a colleague recently undertook a survey. The first of its kind in Canada, the survey targeted adults with a brother or sister with a developmental disability. In a few short weeks, we had more than 360 responses from across the country. Our 2018 published report lays out recommendations for the developmental services sector, governments and even families to better understand the sibling caregiver experience.
Unsurprisingly, the survey results illustrate that, overwhelmingly, siblings anticipate the level of support they currently provide to their brother or sister with a developmental disability will intensify over time. Many identify the aging and eventual passing away of their parents as the primary reasons for the change. As one respondent said, “My parents are still alive, but [aged] 90 and 93. Mother still has control but can’t handle too much any longer.”
That 45 per cent of Ontario adults with a developmental disability, for example, 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 supporter.
However, this not only includes the mental health of their brother or sister with a developmental disability, but also their parents.
Concern for their own need for emotional support ranked further 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, include mental health supports specific to individuals with a developmental disability and their families.
We also suggest that mental health be established as part of the system of supports for individuals with a developmental disability from the early stages and continue throughout their lives.
This support also needs to be available for those with a brother or sister with a developmental disability to ensure their resilience, compassion and wellness over the long term.
Siblings were also asked what they need to support their brothers and sisters with a developmental disability. The top areas identified were housing options, government funding, personal finances, and finding and managing paid supports.
Siblings lamented the long wait lists for housing and the red tape of government programs intended to provide support. Finances were of significant concern to respondents who anticipate taking on these responsibilities at some point and potentially adding to their own financial pressures.
People relying on disability support programs across Canada live in poverty. Our report recommends a comprehensive national funding approach to ensure Canadians with a disability have financial safeguards so they’re 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 (RDSP).
Although siblings don’t tend to connect with others in similar circumstances until well into adulthood – if at all – our survey revealed the majority are looking for ways to connect with each other, share experiences and access helpful resources.
Our report, Understanding the Sibling Experience, demonstrates that if we want to ensure the long-term well-being of individuals with developmental disabilities, we need to pay attention to, include, support and invest in their siblings in publicly-funded health and social services and planning.
Disability supports, in other words , are a family affair.
Helen Ries co-founded the Sibling Collaborative, a new partnership of adults with a brother or sister with a developmental disability who have come together to connect siblings and strengthen families.