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Lorraine O’Neill visits Longwood Gardens with her mother, Liz O’Neill, joined by her father and brother. (Courtesy of Liz O'Neill)
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Discussions about Delaware’s housing crisis have often focused on skyrocketing rents, homelessness and the need for more affordable housing units. But tucked away in the shadows of these conversations is a population rarely thought about when it comes to housing: adults with intellectual and developmental disabilities, many of whom live with aging parents who will not always be able to care for them.
It’s a personal reality for Liz O’Neill and Pat Swanson. Both of their children are adults with IDDs who have lived at home for decades. O’Neill is the president of A-Team Delaware, a nonprofit group that advocates for Delawareans with IDDs. O’Neill and Swanson, A-Team’s vice president, are advocating for change.
“We’re aging,” O’Neill said. “I’m 66, my husband’s 74, our daughter’s 35. We really have to plan for when we’re either not able to care for her because we’re not healthy enough — or we die, because everybody’s going to die. And we feel like sometimes we can’t operate in an emergency situation.”
A 2020 report estimated that 8.38 million people in the U.S. have IDDs, yet many struggle to access proper housing and care. In Delaware alone, The Arc of Delaware, a nonprofit, estimates there are nearly 30,000 adults with IDDs. A 2021 report from the University of Kansas’ State of the States in Intellectual and Developmental Disabilities project found that about 75% of adults with IDDs in Delaware still live with their parents, and nearly 30% of those caregivers are over the age of 60 — higher than the national average.
Yet Delaware has no comprehensive plan for where these adults will go when their parents or caregivers are no longer around. According to O’Neill, part of the problem is a lack of data collection on IDD housing needs and a limited number of housing models designed for adults with disabilities.
“This preplanning, this understanding what the numbers are, understanding the demand is part of what we want to see our state do and plan for that infrastructure,” she said.
“There needs to be a state plan,” echoed Swanson. “If we don’t address this now, we’re going to pay for it in the long run.”
The challenge for the IDD community begins right after turning 21. For children with disabilities, Delaware offers structured support through the education system, providing individualized programs and resources. But at age 21, that safety net disappears.
“When you have a school-aged child, from birth to age 21, your benefits as a person with disability is an entitlement. In school, you’re entitled to a free, appropriate public education in the least restrictive environment. And the school services are pretty good,” O’Neill said. “But there is a big drop-off in services when your adult reaches age 21. And one of those areas is with residential services.”
Housing, in particular, becomes a massive hurdle. While the state provides Medicaid-funded waiver services to cover support for individuals with IDDs, the number of available housing options is extremely limited.
“We go from an entitlement program to an eligibility criteria. So the world really changes when you reach that adult world,” she added. “And there just aren’t as many residential options to meet the needs of the individuals.”
For Swanson, it’s a two-pronged issue where the caregiver workforce needs better support.
“There really isn’t a [housing] model in the state of Delaware that would be ideal for Andrew,” Swanson said of her 35-year old son. “We don’t have enough [direct support professionals], they’re not paid a high enough wage, but we also don’t have a housing inventory. So even if we had the DSPs, we don’t have housing to put people in for the DSPs to support them. So it really is a two-pronged issue. You can’t have one without the other.”
Swanson’s son Andrew, who has severe autism, lives in a small apartment above their garage, but his ability to remain independent is entirely dependent on the few hours of DSP support he receives each week.
“He was just approved for support services this week. And he is on the waiver, that equates to 12 hours a week for us,” Swanson explained. “Twelve hours, you know, number one isn’t enough, but it’s a starting point. Our goal over this year is to get Andrew so that he’s less dependent on us.”
O’Neill’s family has taken another approach to ensure stability for their daughter Lorraine. They purchased a condo for her and worked with the state to provide support staff. However, despite this arrangement, challenges remain.
“We are fortunate to be able to handle the housing costs for our daughter, but the easy part is getting the bricks and mortar,” O’Neill said. “The hard part is really getting the wonderful, well-trained, dedicated staff to help her live there at the hourly rate that’s provided to these people. That’s a big problem.”
And not everybody is financially stable enough to purchase housing for their children.
Despite the needs, there have been no major legislative efforts in Delaware to address housing for adults with IDDs. A-Team Delaware is pushing for change, with priorities that include:
One such model is Chapel Haven Schleifer Center in New Haven, Connecticut, which provides lifelong supported living for neurodiverse young adults, individuals with autism and those with IDDs. The community offers residential transition services, employment support and a structured environment while ensuring individuals remain active in the broader community.
Another model is Weinberg Commons in Cherry Hill, New Jersey, a mixed-use affordable housing development that combines housing for seniors and individuals with disabilities. Residents have access to community-based services through the Jewish Federation, helping them live fulfilling lives with proper support.
Delaware, advocates say, could require a higher percentage of new apartment developments to include units for individuals with disabilities.
“Wouldn’t it be great if developers, when they were going to build an apartment complex, instead of designating like, say 5% for those tax credits, how about 35%?” O’Neill suggested. “That would help the inventory.”
For A-Team Delaware, the next step is taking the fight directly to lawmakers. On May 20, the nonprofit group will gather in Dover for its annual legislative advocacy day.