Why Should Delaware Care?
In Delaware, adults with intellectual and developmental disabilities have multiple residential options, such as group homes or supported living. But families whose adult children still live with them are concerned about finding placement in homes that will provide adequate care for their children before they die.
A good day for Ramara Shackelford is one when her 21-year-old son makes it through his daily routine without prompting.
On those days, her adult son Marcellus “Dre” Shackelford will wake up and get dressed by his second alarm. Then, he will make his breakfast, take his medication, brush his teeth, and wash his face before going to his day program. Many of those steps will be done independently, with minimal prompting from his mother.
Shackelford says that happens about twice a month.
Most days, every step of Dre’s routine is rushed. He lies in bed past his alarms. Then, with help from his mom, he races out to catch his morning bus to a program hosted by the Red Clay Consolidated School District that serves students with intellectual and developmental disabilities in kindergarten through age 22.
On those days, Dre still makes it to his classes at the Meadowood Program, where he works on his social skills, such as conversation starters, and learns to do tasks, such as washing dishes. Shackelford’s goal is for her son to ultimately have more independence as an adult.
“I want him to be able to go to a retail shop and buy his deodorant,” she said, “just things that regular people do.”
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Soon, Dre will be too old for the Meadowood Program, so Shackelford has begun to look for housing where her son can live independently. In doing so, she has encountered a system of adult living situations that can be overwhelming in their complexity. She can’t imagine what it would be like for some who have to do it on his own.
“You could be one of the most educated people in the world, but if you don’t have a fiduciary who is truly trying to assist you and that truly understands his or her role as a navigator, you’re going to be lost,” she said.
Shackleford’s family is one of three who have shared their experiences with Spotlight Delaware, describing the process of finding housing for adults for disabilities as overly complex even while options can be limited.
There are different categories for residential services, according to Jody Roberts, director of the Delaware Health and Social Services’ Division of Developmental Disabilities Services. Those categories could range from neighborhood group homes to living independently but with a caregiver who stops by periodically.
Roberts said each model is intended to provide different levels of support for an individual who is not living in their family home.
Many parents start navigating residential options once their children begin to age out of school-based programs, where they have spent years learning about the best individual ways to educate their kids. Then they have to do it over again for housing, with a whole new set of vocabulary.
“And they tell you, ‘Well, you pick what’s best for you.’ How do you know what’s best for you?” Shackelford said.
Finding homes for siblings
The first thing Delaware health officials do when families say they want to explore residential services for adults with disabilities is an “assessment of need,” Roberts said.
During the assessment, case workers look at the health and support needs of the adult. They also examine the health of the current caregiver, and whether the state needs to better support the family.
Roberts said the state does the assessment because “residential services is a relatively limited resource, not just in Delaware, but across states.”
“It requires provider capacity that is larger and harder to maintain than some of those other services, so we want to be thoughtful about how we provide access to that service,” he said.
Stacey O’Rourke is a mother of three daughters – two 18-year-olds and a 20-year-old. All three of her children have autism and are intellectually disabled.
She said the housing system is “devastating, heartbreaking, and the process is not simple.”
“I can’t die because there’s nobody to take care of my kids.”
Stacey O’Rourke
Like Shackleford, O’Rourke is currently navigating that process, but says that unless it is an emergency, adults with disabilities are unlikely to find a place to live. And she is worried about what would happen to her children if she is unable to take care of them and does not have housing secured.
“I’m afraid to die,” she said. “I can’t die because there’s nobody to take care of my kids.”
O’Rourke is advocating for her daughters to be placed together in their own home because they already know how to live together. But she fears they won’t be.
She has heard from other families that adults with disabilities are often placed into group homes individually – even when a family has multiple adult children with intellectual and developmental disabilities.
“The system, the way it is now, I just have to place [my daughters] one at a time, so they’re going to be in three different places,” O’Rourke said. “That’s not fair.”
Roberts said the state health department encourages families to articulate and document their request for siblings to stay together.
He also said the department may expand its shared living residential option for siblings, with technology and remote support that would allow them to live independently with drop-in visits.
“We’re hopeful that the combination of technology and then those family supports could mean that we don’t need to find a group home that has two vacancies that is going to take both a brother and a sister who need this,” he said.
O’Rourke said she has heard from providers that the state may consider placing all three of her daughters together in a home.
Families do not know what decisions to make
Steve Tull and his wife are 72 years old. They live at home and need to provide around-the-clock care to their 39-year-old son, who was born with multiple disabilities.
Every day, Tull helps his son with his personal hygiene, getting dressed, eating, and transferring him into and out of bed from his wheelchair. Tull said his days end when he collapses into his recliner and falls asleep.
There are resources to help families like Tull’s, such as community navigators, who are assigned to a family while the adult with intellectual or developmental disabilities is still living at home. The community navigator is the family’s primary point of contact, helping them go through the process.
But Tull said the system didn’t work for his family despite being in the housing system for the last five to six years.
“They’re supposed to help you find resources … We’ve never experienced that,” he said.
Tull noted that Easterseals, a nonprofit organization that advocates for families like his, does have a program that provides people with disabilities more control over the hiring process for their caregivers.
Still, Tull does not know what is next for his son.
He has tried asking what will happen to his son if he and his wife die, but says they have never received “a good response from anybody.”
While he would like his son to remain in his home for the long term with an aide, Tull says he and his wife ultimately “have no clue” where he will live in the future. He also worries about whether his son’s next home will be wheelchair-accessible and whether he will receive the around-the-clock care that he needs.
There is currently a national shortage of direct support professionals who work with adults with disabilities every day. Direct support professionals often receive low pay and experience high turnover, which ultimately disrupts continuity of care, according to the American Network of Community Options and Resources, a nonprofit that advocates for people with disabilities.
Roberts said Delaware is one of the many states affected by the worker shortage. He said it impacts the entire service system.
“If there was housing available, where’s the staff to do that?” Tull said. “Where’s the staff to get him up in the morning, make sure his teeth are brushed, and comb his hair?”
Shackelford also is concerned about the level of care that her son would receive if he moved into a group home that is unfamiliar to him.
As a result, she is currently determining how she can will her home to a group home facility, so that after she dies Dre continue to live there.
“I don’t want him to want for anything, but I don’t know if he’ll get that same kind of care in a residential facility,” she said.