Supporting Siblings

advocacy government supports planning well-being

I used to worry all the time about our son with disabilities. Lately, my thoughts and concerns tend to focus instead on his adult siblings:

How much responsibility can they take on when we as parents are gone?
How can we help to minimize “the ask” while we’re still around?
What plans and policies can we advocate for to help them help their brother as he (and we) grow older?

These questions are addressed in a recent opinion piece from two siblings in Canada. Different country. Same challenges. Change is vital now.

I found several of the authors’ suggestions particularly applicable to families in the U.S.:

Since federal programs don’t formally recognize siblings as caregivers, we must use our advocacy skills to spotlight this problem. As the authors explain, “Recognition determines access to income supports, leave policies and planning resources.” We must urge employers and the government to provide caregiver benefits to siblings of individuals with special needs, not just to parents.
We can’t let the “house of cards” collapse. What happens when adult siblings can’t step up? Relying on them to provide unpaid support for housing, personal care, and case management will simply result in increased stress, anxiety, and adverse health effects long term. This can lead to a loss of productivity at work and other undesired outcomes. And it’s truly preventable.
Siblings are not an afterthought or back-up plan. They need to be included in discussions and policies – in families, with aging parents, and in governmental policy discussion.
“The time for help is not when families are in crisis.” This should be a priority now.

I spend a lot of time thinking about resilience and “challenge readiness” as it pertains to families with disability. This subject clearly calls for us to use our resilience muscles (especially structure, creativity, and priorities) to ensure that the resilience of siblings does not become a "cover for neglect.”

What can you do today to help advance this cause? It matters to individuals, siblings, and society – and not just in Canada.