Colin Spritzky’s calendar is packed – and that’s how he likes it.
The 29-year-old has spent five days per week for the last seven years working at InReturn, a manufacturing, assembly and fulfillment center that employs people with a developmental disability or traumatic brain injury. He also letter-sprays vans and trucks on the side, bowls with friends, plays pickleball and basketball, attends movie nights, and hits the gym with his buddy Chris.
“It’s amazing what all I can do,” he said. “I do have a lot on my plate, but I’m literally living the dream.”
Spritzky is one of an estimated 47,000 people in Greater Cincinnati with an intellectual or developmental disability, or I/DD, according to a new housing market analysis by First Place Global Leadership Institute, an advocacy and research group.
He was diagnosed at birth with a rare genetic disorder called Nicolaides-Baraitser syndrome and a duplication of the 17q chromosome, which affects neurodevelopment. He also has autism and epilepsy.
Clearly, none of those labels has stopped the Turpin High School graduate. But they may soon impact how and where he lives.
In a few years, he’ll be among the 12,000 people with I/DD in the region living with caregivers over the age of 60. This means Spritzky and his parents have a finite amount of time to figure out what his future looks like without them.
He faces major barriers, including Medicaid, a lack of housing choices and stigma around what independence looks like for people with disabilities.
But help may be on the way. The region is expected soon to get its first planned neuro-inclusive microhome neighborhood in Oxford.
Hidden housing crisis facing families like Spritzky’s
Emily Kendall is the cofounder of EmpowerMe Living, a new Anderson-based real estate firm trying to build neuro-inclusive housing and help young adults grow their independent living skills.
She’s also the mother of a five-year-old boy with Down syndrome, and she built her company to give him options in the future. When he’s older, she doesn’t want him to face housing instability – something that could have a negative impact on his health.
“Loss of a primary caregiver is one of the factors that leads them to become unhoused, put into an institution, or a living situation that’s not welcomed,” she said.
As of 2020, nearly 8.38 million people had an I/DD diagnosis in the U.S., according to a University of Minnesota study. That was almost 1 million more people than the previous year. Not all of those people need extreme long-term support and not all live with caregivers, but for those who do, there’s an invisible housing crisis emerging that threatens the roof over their heads.
“This is ultimately invisible because people with I/DD are fine living with their families for now,” Kendall said, “but what happens when those caregivers are no longer to care give?”
Her firm EmpowerMe Living wants to get ahead of this. “We’re trying to advocate, build, and show that different models, different choices can exist outside the typical group home,” she said. “We are not going to meet the needs of 77,000 Ohioans, one four-person group home at a time.”
EmpowerMe Living is also behind the regional housing market analysis published earlier this month with First Place Global. It revealed the gaps and obstacles many Greater Cincinnati adults with I/DD and their families face related to housing instability, including the fact that 27% of the 155 respondents had not done any future planning or don’t have the extra income to set money aside despite most of their caregivers being above age 46.
One of the systemic gaps – and the main reason it’s so difficult to advocate for change – is that the state of Ohio tracks the number of people it serves through Medicaid waiver services, but in Greater Cincinnati, that’s only 38% of everyone with I/DD.
Whether or not they qualify for Medicaid, many of those people – if they don’t already – will eventually be living with aging caregivers who might experience their own debilitating health issues or can’t take care of them long-term.
Lisa Byrne is one of those caregivers. She’s the mother of 30-year-old Ali, who has Rett syndrome, a rare neurological condition that affects speech and motor skills.
“We’re not spring chickens anymore, so I have to think about this,” she said. “I don’t want her to have (to move) in a crisis. We’re all scared to death of what’s going to happen when we’re gone.”
In an ideal world, Byrne imagines Ali living in a small house one day, equipped with a separate suite for a full-time caregiver, and surrounded by a car-less community of houses, shops and restaurants. This could help Ali, who is joyful and observant but nonverbal, combat loneliness and find purpose among friends.
Spritzky sees a future where he also lives among friends, maybe in a farming community like Bittersweet Farms in northwest Ohio, which houses people with autism. Safety is his mom Heather’s top concern, so she wants him to be in some form of assisted living with access to transit so he can get to work.
History, Medicaid, money all barriers to housing choice
Only in recent history have people with disabilities even had some form of independence, which is why this population is often left out of the conversation when it comes to creating new housing.
For over four decades, Ohio has provided community-based support services for people with I/DD so they could live at home instead of in state-run institutions where documented abuse and neglect were known to occur.
This was all in an effort to also desegregate people with I/DD, who want to live and work in the world like everyone else.
Though well-intentioned, there are now strict rules for using state services, like Medicaid, which technically doesn’t pay for people’s housing. It does, however, dictate where people receive services. Some consider that to be segregation.
Places like farmsteads, planned communities or any development specifically designed for people with I/DD aren’t encouraged by the federal government because they’re believed to isolate them further.
“They’re essentially saying you can live here and receive services only if you have nondisabled neighbors,” said Ashleigh Kim Weiss, executive director of Together for Choice, a national organization working to advance the rights of people with I/DD.
“But this isn’t the type of thing that should be considered conditional,” she added. “The government’s role should be to provide the support services necessary for people to be able to live where they want to live, not dictate where they should live and with whom by withholding the services they need.”
Kim Weiss wants the Trump administration to rescind this rule, called the Settings Rule, since “it’s the single biggest hurdle to get more housing done.” If it were changed, she believes more creative and flexible housing solutions could be built.
Medicaid can be a barrier in other ways too:
* If someone with I/DD wants to live in a shared group home (the most common form of semi-independent housing for a person seeking to live outside their caregiver’s home), then they don’t have ultimate control over their roommates or where they live.
* Both Medicaid and Supplemental Security Income place $2,000 asset limits on eligible adults’ bank accounts, including savings.
The regional housing market analysis echoed the latter issue. The majority of respondents at 21% said they could afford rent at $300 per month without assistance. With help from family, 51% of respondents said they could cover up to $800 a month. Very few apartments in Greater Cincinnati, apart from affordable housing, rent at those rates.
That’s why access to affordable housing is as important as accessibility for people with I/DD, said Gina Gehm, executive director of Inclusive Housing Services, which owns and manages 181 units reserved for people with I/DD across Hamilton, Butler, and Clermont counties.
“Over the years, it’s become clear we need a lot more one-bedroom solutions,” Gehm said. “Not everybody is always a great candidate to be a great roommate for everyone else. Someone who is an independent person might really want to be independent.”
Microhomes, transitional housing for people with I/DD
For a private company like EmpowerMe Living and other Cincinnati-area groups like Gehm’s, their main mission is to spread the knowledge that people with I/DD represent a wide range of needs and abilities, so a one-size-fits-all approach to housing them will never work.
Kendall believes housing choice can be expanded one project at a time.
Next year with Inclusive Housing Resources, EmpowerMe Living is slated to begin work on New Roots Oxford, a 16-unit microhome community with units reserved for adults with I/DD.
The 2-acre site at 5234 Hester Road will be the first of its kind in Ohio, designed with neuro-inclusivity in mind: using finishes, lighting, materials and colors that calm the senses; building bigger bathrooms and showers; making extra floor space and incorporating rocker light switches.
“We’re getting creative about what this housing could look like,” said Emily Lubbers, the architect on the project with McGill Smith Punshon. “They can’t afford or don’t necessarily need large houses, stairs or a traditional layout. By doing a microhome, we’re driving costs down, making them more affordable, and focusing on designing spaces in which they can age in place.”
“We hope this project is one of many more,” Kendall said “It’s helping people with I/DD who have historically not had access to homeownership opportunities put down these roots.”
Microhomes, like all owned properties, are considered a protected asset class for people accessing Medicaid or SSI, meaning their value isn’t included in the asset limit.
And because the project doesn’t fall under the banner of supportive housing for people with disabilities, which is funded by the Department of Housing and Urban Development, EmpowerMe Living isn’t beholden to government rules. They can also charge home prices at a fraction of the area median income: Units at New Roots Oxford will run from $126,000 to $180,000, which is well below the median market rate for a $350,000 single-family home in the city, according to Redfin.
Kendall envisions their prospective homeowners paying for the units through a variety of sources. They can pay using money from their jobs, through SSI, a special needs trust, or a State Treasury ABLE Account, which is a tax-advantaged savings and investment account that still allows individuals to receive state support services.
Her firm is also applying for down payment assistance programs to help the homebuyers write down the total cost of the microhomes.
Kendall thinks this type of property could be the ideal transitional space or permanent home for people who no longer can or want to live with aging caregivers. Accessory dwelling units, which are now legal in Cincinnati on single-family lots, could also serve the same purpose, she said.
All of these options could support the 36% of people with I/DD who want to buy a home and the 79% of people with I/DD who want to live independently, per the housing market analysis.
This is a relief to Julie Kline, mom to 25-year-old Joe, who is a trivia lover, social media star and part-time employee at the family media company. He was diagnosed with Coffin-Siris syndrome at 22.
Something like New Roots Oxford – or anything beyond the standard group home – represents the kind of secure future, independence, and autonomy she knows her son and others like him deserve.
“We just want our kids to have the same choices that other kids have,” Kline said.
