‘What if he outlives me?’: When parents die, children with disabilities have uncertain futures

In the back of Sharon Croissant’s mind is a clock — sometimes she drowns it out, but often she feels a bubble of panic rise in her chest to the beat of the ticking.

With each strike of the minute hand, she knows she’s one minute closer to crumbling — whether from old age or death.

It’s Croissant’s biggest fear: the day she won’t be able to take care of her daughter.

She doesn’t have the luxury most parents have — raising children to the best of their ability and releasing them to the harsh world, trusting they’ve become self-sufficient enough to grasp on to independence.

Croissant’s daughter, like many with disabilities, will never be independent.

When Kelsey was born, Croissant and her husband beamed over their healthy baby girl. It wasn’t until she was 1 year old they suspected something might be wrong — she could not stand and had low muscle tone. Within a year, she lost the ability to say many of the 20 words she had learned.

Kelsey was diagnosed with Rett syndrome at about 2 years old, a developmental disorder that affects roughly 1 in every 10,000 girls.

Croissant’s fear isn’t unique — it crosses the mind of parents of children with disabilities every day.

W.C. Hoecke’s son, Karl, has Down syndrome and a big personality. His dream is to work on a farm, which he did for three years at The Barclay School in Ridgeway before graduating.

At Barclay, Karl had a to-do list of errands to complete — he milked goats, fed hogs, rode horses and took care of dairy cows.

“I was reading books, and I love reading books. And this is (about) an experience of farming and different countries, like prairie-style,” Karl said. “I started by reading ‘The Little House on the Prairie,’ and it talks about life on an actual farm in the olden days.”

Because Karl is now older than 21, he lost many of the benefits he once received from being in the education system — a place to go and learn every day, a structured environment where he continuously progressed, tailored therapies.

After 21, Hoecke said day programs for people with disabilities offered by the state are often akin to day cares. Many parents who want something more for their children pour money into private programs that guarantee trained professionals will provide therapies and curriculum for them.

“A lot of families, they’re putting every penny they have into therapy and their long-term care for their child, and then all of a sudden, you, as a parent, hit 50, and you think, ‘What in the world am I going to do?’ Because my Social Security and his Social Security isn’t going to be enough to care for him,” Hoecke said.

Like many parents, Hoecke and Croissant devote much of their time, energy and money into making sure their children are being fulfilled and cared for, but when they aren’t around or capable of doing it anymore, they fear no one will.

“My fear is not if Karl dies — my fear is, what if he outlives me?” Hoecke said.

It was only 60 years ago when doctors in the United States recommended parents institutionalize their newborns if they were diagnosed with Down syndrome.

Over the years, parents of children with disabilities have decried institutionalization, and resources for them have expanded to make life easier for the children and caregiver.

Scientific and medical advances have shed light on rare diseases that has resulted in improved care and therapies for those with special needs, and often, an increased lifespan.

Hoecke and Croissant know there are government agencies to physically take care of their children should something happen — the state Department of Disabilities and Special Needs steps in with residential care when emergency situations arise.

They aren’t as concerned with finding them beds or a place to stay. Their biggest fear is they won’t be happy or fulfilled — that they’ll be moved around from one residential center to another.

“Who will be his friends? What will his quality of life be?” Hoecke said. “That is the thing that creates the greatest amount of fear inside of my heart.”

Another question that crosses their minds: Are there family members willing to take on the responsibility of caring for someone indefinitely, and should they ask that of them?

“We don’t have any family here. Which, even if we did, the burden of caring for someone 24 hours a day is enormous,” Croissant said. “There’s not a lot of families necessarily standing in line that want that job. They might love the person, but they’re just not equipped to do that job.”

Carol Kurlowitch’s family is currently going through that problem. Her younger brother, Mark, was born in 1961 with a developmental disorder, and he was later diagnosed with Marfan syndrome, a genetic disorder affecting connective tissues and resulting in long arms, poor vision and heart problems.

Mark has more independence than many with developmental delays, but he still can’t live on his own.

In 1990, Kurlowitch’s parents moved to South Carolina to be closer to her because they knew they would need help caring for Mark in future years. Kurlowitch and her husband have experience caring for someone with special needs not only because she grew up with her brother, but they also have a daughter with Down syndrome.

Because of Mark’s heart problems, he had to have heart valve replacement surgery as an adult, which Kurlowitch said caused him to lose some functionality — his stutter got worse and he lost lung capacity. In 2009, he had a major stroke and now walks with a cane, but incredibly, he’s still able to drive.

“Most, if not all, families with special needs children go through major health issues, and most of them, major surgeries,” Kurlowitch said. “As far as his relationship with his mom and dad, through all of these difficult things — the heart surgery, the stroke, the challenges he had before — those heartstrings got just tighter and tighter knit, and my parents are very tender-hearted people, very protective people.”

Although Kurlowitch’s parents became unable to care for Mark, they still tried, and when they moved into a nursing home, they took him with them.

“My husband and I, for about 10 years, really tried so hard to persuade them to let him now come with us,” Kurlowitch said. “We purposely purchased a home with a large enough room for him to be able to have his space, and it took a long, long time. My parents got to a point where both of their health problems got bad enough where they needed to move into a retirement facility, and, shockingly, they took him with them.”

Four years ago, Mark finally moved in with Kurlowitch.

Now, Kurlowitch and her husband have found themselves in a position of caring for two adults with special needs as well as her parents, who still live in the nursing home.

Kurlowitch said she has another brother, who lives in California, who won’t offer any assistance.

“What happens when the parents can no longer care for the individual? Well, in my case, here I am with a 21-year-old child who still needs a great deal of supervision,” Kurlowitch said. “And then we have my brother, who needs a significant amount of supervision. I cannot leave the two of them alone, I need to get respite care every time David and I have to be gone, and then also caring for my mother and dad. So it’s very difficult.”

The desire to give their daughter and Mark everything they need while fending off their own medical problems has worn on Kurlowitch and her husband, who are in their mid-60s.

“We’ve had to have tough love with everyone, and we’ve had to advocate for ourselves as well as these four individuals that we’re caring for,” Kurlowitch said.

DDSN has respite care available for families who need a break for a couple of days, but it only goes so far with aging caregivers.

Kurlowitch is friends with many couples who have adult children with disabilities. Only one — who is divorced and in her 80s — has had no choice but to put her son in a group home. He still lives with her three days out of every week, and even so, he’s regressed.

“I think about her and I think, what kind of a life is that?” Kurlowitch said.

Residential care facilities in South Carolina make room for people with critical emergency situations — if there’s nowhere they can go, DDSN will find beds for them.

But more often than not, those seeking out residential group homes are put on a waiting list.

Lynn Lugo, director of employment and day services with DDSN, said the department tries to put people in homes that are good fits for them — they look at places nearby, the level of care needed and their skills and interests.

“The case managers work with the families to start thinking about and making an emergency plan to prepare for that time, and we really encourage a lot of natural supports, think about, are there family members that would be able to help, are there friends — even if they could just help temporarily, because in an emergency situation, it would make it a lot easier of a transition if folks can be around people they already know and already trust,” Lugo said.

Lugo said expanding respite and residential care is a priority with DDSN right now.

“There’s a priority there to have beds available for folks that have caregivers that are aging, because at some point, people aren’t going to be able to provide care,” Lugo said. “It is being talked about and things are being worked on to address that need, because we recognize that yes, it is a need.”

But the department has had its own struggles recently — in October, the director resigned amid criticisms of the department’s financial stewardship and various lawsuits alleging abuse by some of the employees.

The DDSN’s 2016-17 Accountability Report showed 12,600 entries on wait lists for the department’s services, which counts the number of entries for a wait list rather than the number of total individuals since some are put on multiple wait lists. The average time someone spent on a waiting list was nearly four years.

The department had not provided current wait list numbers as of Saturday.

But Croissant and Hoecke have hatched a dream plan to address the problem — a full step-down community complete with families, physicians and caretakers.

The community, which they want to call Harmony, would be a neighborhood of families with children with special needs, as well as seniors who need care, built on a trust fund.

Because people with disabilities aren’t eligible for Medicaid if they have too much income or too many assets, including those left to them in wills, the trust would need to be handled with care — it wouldn’t go to any individual, but to the community.

“It’s not a community center, it’s an actual community — a neighbor-helping-neighbor community. It’s inter-generational, so it’s friends and family and individuals with disabilities all living together in a community,” Croissant said.

Croissant imagines it like a large subdivision — houses, a recreational center, a swimming pool.

“Part of living there is you volunteer or give your time back to the community, and what you do is you give, say, 20 hours a week in volunteer hours, and you help take care of the individuals with special needs in the community,” Croissant said.

The goal in this community is not only to help caregivers, but also to enrich the lives of those with disabilities and provide a resource for anyone who wants to serve or work in a career involving seniors or people with special needs.

The idea is based on several similar models — Generations of Hope in DC and the Federation of L’Arche in France, both of which have communities for families with children who have disabilities.

On top of the dream to start Harmony is the hope to make it sustainable.

For parents like Croissant, Hoecke and Kurlowitch, the need for the community is immediate. They know their time is running out.

“Eventually, I’m going to age to the point where I physically can’t do it anymore,” Croissant said.

When Hoecke brings up the idea to parents he meets, they tell him they would move in as soon as possible.

“You can talk to anybody — sit in the lobby of parents coming in to Greenwood Genetic and ask them, ‘What are your long-term plans for your child?’ And you’re going to have tears within 20 minutes,” Hoecke said. “We’ve got to come up with solutions, something, some ideas, because even the ramping up of autism, the growth of that — what are we going to do?”

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