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Hundreds of thousands of people with intellectual and developmental disabilities in America are living and receiving care at home. But their aging caregivers, many of whom are parents or siblings, are worried about who will continue to care for their loved ones when they are gone. Christopher Booker reports on some steps being taken to support families as part of our series, ‘Rethinking Lifespan.’
Advances in healthcare and changes in public policy have helped increase the life expectancy for people with intellectual and developmental disabilities. Many of them now live at home.
But for the hundreds of thousands of aging caregivers of adult children with disabilities – many worry about what happens when they can no longer care for their loved ones. NewsHour Weekend's Christopher Booker traveled to Rock County, Wisconsin to see what one community is doing to prepare.
This story is part of our ongoing series "Rethinking Lifespan" and parts were reported before the COVID-19 pandemic restrictions were in effect.
It was just a few months after Virginia Socwell gave birth to her second son, Kent, that his health took a turn.
Within a few days he was back in the hospital undergoing surgery to remove part of his bowel. But he lost consciousness several times during the surgery which led to brain damage .
We always thought he was going to recover, because he was actually looking pretty good. But– it was a long time before we said, "Well, he's just not gonna get a lot better anymore."
The damage was permanent. Kent can't walk unassisted and has very limited verbal skills. And for the past 51 years it's been his parents, Ron and Virginia, caring for him in rural Wisconsin.
Did you think you would still be in this caregiving position at your age?
Absolutely not. I didn't think I'd be taking care–
Well, I didn't know– you know, who else was gonna do it. I always said you know, 70s, that's about it. You get to be 80, it's over. Well, then you get to be 80. And you say, "Well, maybe 90–"
"–it'll be over."
Both 85, the Socwells are not alone among people their age caring for someone with an intellectual or developmental disability.
In fact, there are estimates that between 800,000 and one million Americans over 60 are providing such care for a loved one. And many are not prepared for the day they can no longer do it.
And so it's important to get ahead of that crisis and help families to think about what happens next when I can't provide that care.
Lisa Pugh is the head of the Wisconsin chapter of a non-profit called the Arc, a disability advocacy organization. As the mother of a daughter with intellectual and developmental disabilities, she could immediately relate to the Socwells.
Meeting people like Virginia and Ron really is a gift to me in that I– it's kind of a window into my own future, into our family's future. And it helps me to kinda tackle my own fears and think about the sortsa things that my husband and I want for our daughter, and how we can take those incremental steps.
Pugh notes that as people live longer, including those with intellectual and developmental disabilities, there is increased pressure on family caregivers, who often are not paid.
There are state and federal programs available, the majority of which are funded through Medicaid – but the need for support often outweighs the availability of services.
As a result, across the country close to 600,000 people are on waiting lists for community and home based-services like skilled nursing care or physical therapy, according to the health non-profit Kaiser Family Foundation. But Lisa Pugh says Wisconsin has been working to change that.
Wisconsin has done a pretty revolutionary thing in that we don't have the same long waiting lists as there are in other states for the programs. We've done a good job investing in the sorts of infrastructure that families need in– in order to access supports.
In the late 1990s, the state opened Aging and Disability Resource Centers to give people access to information within their community. It has since expanded long term care services.
Wisconsin also changed the way it allocates money. In 2008, some families began to manage their state funds directly, giving them greater say in what type of services they receive.
According to the Wisconsin Department of Health Services this has helped reduce wait times, which they say, will be eliminated by next year.
But even with these changes challenges remain.
So while you might be able to walk in the door and take a screen and they say, "Yes, you are functionally and financially eligible for long term services and supports," your challenge is going to be finding the workers to fill those shifts.
For the Socwells, Medicaid pays for Kent's day services and an aide who prior to the COVID-19 pandemic would take Kent swimming and do other activities with him.
Now, during the current health crisis those activities are done behind a mask or shield at the Socwell home.
But it's Kent's parents who do the bulk of the work. They bathe him, dress him, and feed him daily.
But, a question looms over their routine – who will do this after they're gone?
Where would you place where you folks are now in terms of preparation?
I would say the very beginning.
We've– we've been looking. We've been thinking. We've been thinking a lot about it. But I guess we're just– we don't know where to go.
If the Socwells die without a plan in place the decision for Kent's ongoing care will either end up with his older brother or it may end up with the state. That means a social worker would step-in and he would then be placed in emergency housing as he waited for a long term solution that may never come.
So he would be moved from his home, from the home he's lived in for however many years.
Stefanie Primm is the Executive Director of a Wisconsin disability service provider, LOV-Inc.
He would be grieving his parents. And then he would be put into a setting that was brand new to him with potentially roommates with other disabilities that were brand new to him, caregivers he had never met before. It's a very, very traumatic experience for, for these individuals.
Are there things that the state or the federal government could do to help within this process?
A lot of the– the funding in the service system is directed at the individual with the disability, which is where it should be directed. But a lot– it– it neglects the needs of the caregiver and the support for the caregiver to do things that are creative that are outside the box.
Late last year, the Arc Wisconsin and LOV Inc started getting families in Rock county together to talk and plan. That means setting up a financial trust or securing long term housing for a disabled son or daughter.
Virginia Socwell was in attendance at one of the meetings. So were a couple of 92-year olds, Betty and Frank Daniels. They and one of their eldest daughters were there to talk about another child, 56-year old Patty.
Patty was a beautiful baby. When we brought her home from the hospital it seemed like everything would be ok when we get her home.
But it wasn't. The infant had trouble feeding, the result of respiratory problems. And then she developed seizures.
By the time Patty turned two she was diagnosed with an intellectual disability.
But with a family of 11 brothers and sisters the Daniels say Patty has led a full life.
And by several measures the Daniels are much further along with their preparation for Patty's continuing care after they pass away.
They have a financial trust for her, and guardians in place who are aware of her needs. And she has long term housing. Since her early 20s patty has been living in a group home, which is paid for by Medicaid and social security disability benefits.
Our philosophy was that we never wanted– the rest of our children to have to take care of Patty. We didn't feel it was fair to them or right for Patty. She needed a place of her own. And that's where we were, really thought the group home was– group– was– was perfect solution.
But despite their early preparation, they haven't stopped worrying.
We've tried the– to look ahead and– and get as many of those things taken care of– as we can. But there– there's always– there's always a struggle.
LOV Inc and the Arc are there to help with that struggle. They've created what they call "toolkits" to help parents and caregivers prepare:
These kits serve as a central place to record important life details like bank information, doctors, or designated guardians. They can even provide prompts about how to talk about planning for the future.
Meanwhile Wisconsin's governor, Tony Evers, has created the state's first ever task force on caregiving, hoping to recruit more workers like nursing assistants and expand support for unpaid family members.
Lisa Pugh of the Arc Wisconsin is on that task force and the solutions it comes up with could have an impact on her own family and her daughter's future.
Any family wants their loved one to be accepted and part of a community. And that she'll have her own life.
You're certainly putting– a hell of an effort to make sure that happens.
Yeah. And I'm glad I've got a lotta years ahead of me to plan for it, too.
And for the Socwells.
What do you worry most about when you're thinking about caring for Kent?
Us dying. That's, I pray every morning I'm alive to change his diapers. Really, I– I do. I– I'm just happy that I can still do that.
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Connie Kargbo has been working in the media field since 2007 producing content for television, radio, and the web. As a field producer at PBS NewsHour Weekend, she is involved in all aspects of the news production process from pitching story ideas to organizing field shoots to scripting feature pieces. Before joining the weekend edition of PBS Newshour, Connie was a Peace Corps volunteer in Thailand where she trained Thai English teachers.
Christopher Booker is a correspondent and producer for PBS NewsHour Weekend covering music, culture, our changing economy and news of the cool and weird. He also teaches at Columbia University’s School of International and Public Affairs, following his work with Northwestern's Medill School of Journalism in Chicago and Doha, Qatar.
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