Doreen Cummings is the Director of Services for Mainstay Supportive Housing. This series explores different topics related to finding the right supportive housing for your loved one with intellectual or developmental disabilities. This interview has been edited for length and clarity.
Much of the work planning and caring for children with developmental and intellectual disabilities falls on parents’ shoulders. At what point should that care transfer to siblings or other family members?
It’s very important from the beginning to nurture relationships between siblings, other family members and your loved one with a disability. Parents should be expressing their needs at every stage. I feel like that the most transparent way to do this is celebrating the joys, but also acknowledging the hardships. Parents should start this early on in their journey and not wait to include people in what we call the “circle of support”.
Every stage of life brings a different sort of labor. As you’re thinking about the long term, it’s crucial to talk about what that future is going to look like for siblings and other family members, or friends, and how they will be called upon for support.
What qualities should parents look for in the “circle of support” and who do you recommend they seek out?
It wouldn’t be difficult for parents to make a quick list of at least two or three people in their lives they want at that table. Certainly, the circle should include parents or stepparents, along with adult and teen siblings. Siblings need to be included, so they start thinking about the future and taking on some responsibility. Eventually, it’s the nieces and nephews of the adults with disabilities who will be called on to take over. Siblings are the longest lasting relationship in a family, however they age at the same time, so you have to think about the next generation. Nieces, nephews, aunts, uncles, and trusted friends. Consider those in your life who would be the right choice?
Some families also choose to hire an attorney to act as a guardian should they not have an adequate circle of support to wrap around their loved ones.
There’s certainly a lot of fear and uncertainty for parents in terms of who is going to take care of their loved one when they cannot. What kind of emotional support do you recommend for families?
I am a big fan of counseling, and today you don’t even need to go in person. Many therapists are doing virtual work. There is a lot of choice out there in terms of finding just the right person for you. If you have a loved one with a disability therapy is a positive thing. I’d recommend it not only for parents, but also for your loved one with a disability. A good friend who you can laugh with and trust can be so beneficial. Finding respite is very important for you and your partner.
In many cases, if they’re not living at Mainstay or living with DDS or other agencies, they are likely living at home. So, make sure you are practicing self-care because you are in this for the long run.
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