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.
What are some of the most common concerns you hear from parents of children with developmental and intellectual disabilities as these parents themselves get older?
I think it’s probably on parents minds as soon as they understand the diagnosis of their kids from when they’re very young. And that question is, “what’s going to happen to my loved one when I’m no longer here?” That’s the big question. I try to talk to families about taking it in chunks. Looking at it in 5-year or 10-year chunks, instead of being overwhelmed thinking about what the next 40 years is going to look like and then what’s going to happen after you pass. Parents should do their best to put things into place to make things as seamless as possible for the next generation to take over.
We also hear a lot about wanting a good place for their loved one to live. They want their child to be able to have their own lives outside of the family home. Another issue parents are worried about is, who is going to take care of my loved one as we all age together? And that brings into question other siblings in the relationship. Is there a sibling who is going to step up to do that? How do we prepare siblings from when they are very young on what that role they will take? That is a concern we talk through with families. They are worried about putting a burden on their other children and other family members.
What are some ways that supportive housing options like Mainstay can help mitigate fears that families have?
Mainstay helps families navigate the system and get public benefits. One thing we do is direct folks to get Social Security, to get on the mobile voucher housing list, to get on Mass Health as a secondary or primary insurance. We also help connect them with the Department of Developmental Services or Department of Mental Health for long-term umbrella support. Setting up finances is another big one. We recommend and refer folks to friends of ours we’ve met along the way in the community who either have a family member with a disability and have made it their work as attorney’s or financial planners to help other families. That can be through an ABLE account – A Better Life for Everyone – which protects your funds in a pretax account so that your loved one’s benefits aren’t jeopardized. Tapping into the MBTA’s The RIDE transportation system is also helpful. We also talk with families, again, about preparing siblings and other loved ones to be able to take the torch and accept that torch when the time comes.
Can you talk about the important role that siblings can play in supporting their parents, not just their brother or sister?
I love working with siblings. I find that they have a bit of a different attitude with their brother or sister with a disability. Their expectations are a little higher. There’s no guilt that sort of surrounds that relationship, so there’s a different look and perspective as to what the sibling can do.
It’s important for parents to set that relationship up to be a good, loving relationship between the siblings and their brother or sister with a disability. That’s key for the long term. If that relationship is strong, then the sibling will want to be at the table. It’s really important for parents to prepare the siblings. They shouldn’t hide them and be afraid of burdening siblings. Instead, they should be honest and open.
Another step they can take is to be a silent guardian, which is rare. Maybe add a sibling in one of the slots instead of both the parents and try to get on the same page. As parents are aging, we assure them that it’s going to be okay. And the final step is for siblings to nurture their own kids – the siblings’ own children to have a good relationship with their aunt or uncle with a disability, because that next generation is going to be involved.
How important is it for parents themselves to set up a support system as they age, and what should that support system look like?
That’s the classic circle of support where you’re collecting people, so that everybody at the circle has light lifting to do. And when one person must leave that circle, it is still intact. You’re really looking at getting someone you trust – again intergenerationally – to help with finances and keep an eye on things for the long-term. If you have someone who is sharp with medical issues and insurance, it’s helpful to have them at the table.
You want to have people at that table that are going to be helpful. It’s an honor to be asked to sit at that table. You’re saying, “I want you to be part of John’s circle of support because you’re somebody that knows him, gets along with him, cares about his future, and will really add something to his life.”
Unfortunately, not all siblings are willing – or even able – to take over as caretakers. Where do you suggest parents look to in these situations?
It’s interesting because in a lot of cases we don’t want the siblings to step up and say, “I’ll do it.” We want the situation to state who naturally comes in and takes over. Family members are going to be at the table, until they can’t be anymore. And again, it’s just going back to that circle of support. That circle wraps around whatever services there are. Whether it’s state services, or a private model like Mainstay, you’re going to have that circle wrapped around whatever model works for your family. I feel in most cases, siblings can’t be the caretakers. They can have a role, a silent and caring role, even if they don’t have a dime to their name. They can be a strong team member.
It’s important that you make your needs known to your service coordinators. And to really paint a true picture. “I’m ailing, I’m aging,” opposed to painting the picture that “he’s fine, we don’t need anything. It’s going well.”
I always tell families to make sure you’re thinking about those challenging times and throwing away your proud parent hat when you’re going into these meetings because what you really need to share are the hard times, not the easy times. And that’s something that’s hard to do for parents.
