More than 6 million Americans have a developmental disability and a growing number of them have grown into adults who continue to be cared for by their parents.
Those parents are growing older too and there are now more than a million people over 60 caring for someone with intellectual or developmental disabilities in their home.
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What happens when these parents or caregivers die?
To get some answers, I spoke with Pam Mirabella, mother of a daughter with Down syndrome, who set up a special needs trust for her, and lobbied on behalf of people with disabilities for 47 years, and Shawn Ullman, senior director of National Initiatives at The Arc, which advocates for people with intellectual and developmental disabilities and their families.
Advocating on Behalf of a Loved One
I spoke with Pam Mirabella in early February, who shared the journey she took to care for her oldest daughter, Carla. She spoke with me about her own experiences, and the evolution from advocating for her daughter to others over the years.
Cake: Can you tell me about your personal journey? You clearly learned about how to care for a child with disabilities by having one. I’m wondering if you can share some of that experience.
Mirabella: Our first daughter, Carla, was born with Down syndrome. She was mid to high functioning, and we had to lobby hard to get her integrated with the broader school, not just isolated in special education. She was the first child with Down syndrome in the West Contra Costa County school district to be mainstreamed.
After 18 years of speech therapy, she was one of the speakers at her De Anza High School graduation. We were so proud of her.
After high school, she went to community college, mostly in special ed classes. But she was mainstreamed into the culinary courses, which she loved. She took the bus from our house in El Cerrito to Contra Costa College — she felt so independent, like she was really part of the school.
After college, she was ready to move out of the house, and we went looking for the least-restrictive living situation, but one where there was some support.
We worked through the Regional Center, a nonprofit in California that helps people with developmental disabilities and their families access services, and one social worker suggested we check out Napa.
Carla lived in a family’s home in Napa and went to work there for 14 years. But there were many missteps. She had roommate problems. Some of the other adults she lived with were emotionally handicapped. Sadly, she developed a brain tumor and died in 2008."
Cake: You created a trust for her so she would be taken care of if you and your husband died.
Mirabella: That’s right. We went to a lawyer, created a special needs trust, which defines so many important things. How she would be cared for in case something happened to us.
We didn’t want our other daughter, who lives in Texas, to have to care for Carla. Sometimes people with Down syndrome are more likely to get dementia, so we were also anticipating that possibility.
The trust included end-of-life questions — if and when she faced medical issues, we wanted to spell out as much as we could about what she and we wanted. We wanted her to be as independent as possible, and I think we really achieved that.
Cake: You also created a career for yourself as a result of all your advocacy.
Mirabella: Yes, I advocated for kids with special needs and lobbied for them for 47 years. Carla would be 47 now. I served on the Contra Costa County Board of Education for 28 years. I’m retired now, and devastated with how, in one swoop, Betsy Devos (U.S. Secretary of Education) has damaged special education, primarily through privatization.
Cake: Who makes the decisions for adults with disabilities if they aren’t able to?
Mirabella: If the parents haven’t named anyone, the state assigns a conservator. We led workshops for parents on how this works. When we were going through this, there was the Regional Center and DREDL (Disability Rights Education & Defense Fund), which was incredibly helpful to us, as was Support for Families of Children with Disabilities in San Francisco.
Fortunately, there are more resources available now that weren’t around back then.
Cake: What would you say to someone who was planning for their child with disabilities?
Mirabella: I would highly recommend starting by putting together a living trust or a special needs trust. And get involved in a support group. The West Contra Costa County school district provided resources like that. The support groups grew from the grassroots, from the parents.
(Mike Mirabella, Pam’s husband and Carla’s father, who had been listening in on the call, piped in.)
Mike: Everyone walks into these groups kicking and screaming, but there are people who’ve been through this before you and they can be extremely helpful. The groups are so important for emotional support, for the diversity of experience, for the networking.
We were in a different situation than many of the people we met in these groups. We had a stable financial situation. A lot of these kids come from single-parent families that have few resources. We also had an advantage in terms of networking too, knowing lawyers and such.
I can’t imagine doing this by myself and I can’t imagine doing this without the resources we had.
Looking For Resources When Caregivers Die
Later in the month, I spoke with Shawn Ullman, with The Arc, in Washington, D.C. The conversation focused on what government actions may take place by default if a person with disabilities has no family or network to help them. Ullman makes the case for helping families for such possibilities.
Cake: I recently interviewed the parents of a daughter with Down syndrome, who had put together a special needs trust for her, and who understood how to work the system. What happens when that’s not the case, when the parents or caregivers of an adult with disabilities have died and there’s no trust, no plan, no money? I understand that the situation can be bleak.
Ullman: The hope is to avoid situations where things seem impossible — because there is not a plan for the future. The reality is that most adults with disabilities who are not able to live independently live at home with their parents or other family members. And they are usually not connected to long-term services and support through a service system.
If they are eligible, they might receive Social Security and/or Medicaid. But the dollar amount of those monthly benefits are kept fairly low. Nonetheless, these safety net programs are the lifeblood for many people with disabilities.
Medicaid is the primary insurer for many people with disabilities. That is why we become so concerned when there is talk of cutting these programs. All of this is to say, when parents or other caregivers die, and there’s no plan, no special needs trust, or a significant amount of funds, there are very few options and the future is uncertain.
Cake: We get that many people do not have trusts or insurance. Some don’t even have family. So what happens?
Ullman: What happens if families haven’t planned — well there is an absolute worst-case scenario, best case, and a million possibilities in between. Best case scenario, they are connected to long-term services and support, and they can live and thrive in the community, even without their parents or caregivers.
Worst case, a neighbor knocks on the door and finds a person with a disability living with their deceased caregiver and the house is full of trash and they’re running out of food.
If that happens, the person might end up being placed through Adult Protective Services into a temporary setting like a homeless shelter, nursing home, or foster home. That can mean a lot of change in a short period and, for some, leaving the only home they have ever known. These situations sometimes pose significant physical and mental health challenges, depending on the person.
Cake: I understand that there’s a long waiting list for services, for Medicaid coverage.
Ullman: Sad, but true. The waitlist for some Medicaid services is many years long, even a decade in some states. The wait is a major barrier and extremely distressing for a lot of families. It is important to know that most states do have priority order for waitlists. That means people in crisis are moved to the top of the list and are considered a higher priority to receive services.
Cake: So that’s why you need a plan for what happens when the parents die.
Ullman: The plan is important. And at The Arc, we are trying to get that message out — even if you have little money, it’s important to sign up, let prospective services and programs know what your desires are for your loved one. We call this the Letter of Intent, and it applies to many areas of life.
Cake: I recently read a PBS story from 2016, which estimated that there were 860,000 people over 60 caring for someone with intellectual or developmental disabilities in their home. My understanding is also that many adults who are disabled are not connected to any services.
Ullman: The number of caregivers over age 60 caring for someone with I/DD is now more than a million. We do recognize just how many adults with I/DD are living with aging caregivers and are not connected to services. And we recognize that things can get bad.
The Arc is working to connect with communities to reach families that may be isolated or just may not know about services. We created the Center for Future Planning and the Build Your Plan tool to help families develop plans. We look at what kinds of natural supports can be put in place — with neighbors, faith-based centers, and community services.
We spent years creating resources to help families plan for the future and now we are focused on telling people about them.
Cake: So if you “end up in an institution,” what does that actually mean?
Ullman: If a person with a disability is placed in a state institution, it means they are no longer living in the community — and that is a shame. The Arc has focused on advocating for deinstitutionalization to ensure that people with I/DD and other disabilities can live meaningful, independent lives in the communities of their choice among their families and peers, with supports and services.
Cake: If no one from their family steps in, they end with a public guardian? Isn’t it often the case that these people are overburdened, that the disabled person may not get as much attention as he or she needs.
Ullman: Most people with disabilities do not need a guardian. They are able to make their own decisions with support from people they trust. The goal is always to look first for family, friends, or other informal support people that are willing to help.