Red flags raised over disabled adults’ unmet needs
Matt Cordaro, CEO of One Sky Community Services in Portsmouth, is working alongside other area agencies to build congregate housing that meets the growing need of adults with disabilities and behavioral disorders. (Photo by Allegra Boverman)
The ongoing housing shortage in New Hampshire has affected more than a fair share of people in the Granite State, most particularly individuals with intellectual disabilities and acquired brain disorders. As a result, they are often forced to seek services out of state, being uprooted out of their communities, to move to a place where housing is available.
The housing needs are very specific for most people with mental, behavioral or physical disorders who require special accommodations housing needs, which makes it hard for agencies like One Sky Community Services of Portsmouth to find housing that meets those needs.
“When they need a congregate setting, the congregate settings are completely full in the state of New Hampshire,” said One Sky Community Services CEO Matthew Cordaro. “We have something like 20 people a year that have to go into a congregate setting for whatever reason. We just don’t have the beds to make it work.”
The pandemic only has made matters worse, as people in need of long-term care couldn’t find a hospital bed or receive the services they desperately needed in order to live comfortably.
That’s why One Sky — one of 10 area agencies in the state that work with the NH Bureau of Developmental Services – has started to build housing that met the needs of those they serve when they couldn’t find homes on the market that would work for their clients.
With this specialized housing, One Sky is able to provide “long-term supportive service, and we were able to prevent one person from being placed out of state. And we were able to bring two other people who were placed out of state back into the state of New Hampshire. And that is what is driving us to build capacity,” Cordaro said.
Costly endeavor
But developing such housing comes at a price. In order to build a new home or buy an existing property, One Sky relies on funding from intellectual and developmental disabilities (IDD) waivers and acquired brain disorders (ABD) waivers from the NH Department of Health and Human Services.
According to DHHS, the waivers aim to provide services that help “individuals with acquired brain disorders live, work and pursue their life aspirations within their communities. It is the State’s intention to support positive life trajectories … in a manner that ensures that waiver participants receive the necessary supports to access the broader community, build upon relationships, aspire to meet personal goals, and have access to technology, goods and services … in order to lead a good life.”
One Sky’s mission is to help do just that: “Our focus is to overcome systematic challenges to be able to focus on getting people safe places to live that ensure their dignity, allow them community access and is nice as well.”
Cost comparisons
The Bureau of Developmental Services, or BDS, supports approximately 5,500 individuals statewide. Thirty-nine have been outsourced to Florida, two to Pennsylvania and five in Massachusetts due to a lack of housing in New Hampshire that supports their needs. In the Granite State, beds cost about $180,000 to $280,000 for congregate living situations, with the most expensive beds costing the state $360,000.
Most of that is funded through those ABD and IDD waivers.
“The nice thing about that is, for every congregate home that we build in New Hampshire, those are not only just three people that come home and they can live in their natural communities and be around their families and interact with people in their natural settings, it also creates 13 full-time jobs, paying anywhere from $18 to $22 an hour,” said Cordaro.
However, if an individual is placed in another state, the average cost is $384,349 per person in order to receive services — which is funded by Medicaid, a 50/50 state and federal match — not to mention transportation costs, which may be about $25,000.
As of now, One Sky owns five homes, with a total of 19 beds. Cordaro said, “If I could have 12 beds in an assisted living facility, I could bring 12 people home (from out of state), but that facility would probably cost somewhere about $2.5 million, $3 million to physically set up for what we would need. We would then have to staff it.”
When looking for a house to convert to specialized housing, One Sky, “we’re looking at generally first-floor homes or one-floor homes, three to four bedrooms,” said Cordaro. “You want it to be a natural environment and a non-institutional setting. But you want to make sure that it makes sense financially to have that home.”
But finding these types of homes is no easy feat. “That’s the void that we have right now in our system: We have people that need the support, and they’re being sent to different states because that’s the only option that’s presented to us,” said Cordaro.
Ann Sanok, of Exeter, is a mother experiencing these challenges firsthand with her developmentally disabled adult son, who requires specialized housing. Due to the severity of the services he requires, there was the possibility that he would have to leave New Hampshire.
“The fear (of him going to out of state) is disrupting our lives. There’s a constant knot in my stomach,” she said. “I can tell you from 26 years’ experience with this, very autistic folks, many who have extreme or unusual behaviors, aggression and multiple sensory issues, need more one-stop, on-site programming — not less. They need well-staffed, trained residential communities where residents can do many activities onsite — exercise, art, etc.”
According to Sanok, “We need to use the money more efficiently. You take the money (the state) is spending in other states and build what you need up here. Why isn’t the state doing that?”
Aging population
Another problem that arises from this lack of housing is New Hampshire’s aging population, some of whom care for people with intellectual and developmental disabilities in their own homes. Advocates Building Lasting Equality in NH (ABLE NH), an organization that advocates for and protects the rights of people with disabilities, recently published its 2021 Disability Housing Survey Report, which produced ominous insights.
Of the over 350 respondents surveyed by ABLE NH, “70 percent of both family caretakers and individuals with disabilities reported a need for access to appropriately supportive, accessible affordable housing.”
Add to that the age of the caretakers who took the survey – some 60 percent reported to be between the ages of 55 and 74. As they retire and require services of their own as they age, how and where will their child be cared for?
According to the report, “More than two out of three family caretakers expressed worry or concern about what will happen to their loved one in the future.”
It adds: “NH’s Department of Health and Human Services and the nonprofit service provider system for this population inappropriately relies on parents to provide housing for their adult children … This serious, deep structural flaw in the current system ignores the lifespan threat of housing instability and homelessness for individuals living with intellectual and developmental disabilities.”
Said Sanok: “There’s no peace of mind yet. If I wasn’t around, (my son would) get moved to Florida and get forgotten down there. When’s the other shoe going to drop? It’s an unsettling way to live. We need more stability.”
In its response to the report, Community Service Network Inc., the association that supports New Hampshire’s 10 area agencies, said, “Over the past four years, the number of beds has nearly doubled thanks to collaborative efforts between BDS, area agencies, CSNI and private providers … The recommendation to increase in-state (housing) capacity is sound and is consistent with the direction that CSNI and the area agencies have been moving in the past 10 years; however, the methods for doing so must be carefully measured and coupled with investment in staffing, professional development, clinical integration, crisis response capabilities, and home site development.”
While area agencies and other nonprofit organizations work to alleviate such a severe housing crisis, it’s up to state government to push forth legislation that will help fund and motivate housing developments to grow, according to advocates for the community.
Among its recommendations, ABLE NH specifically urged that the NH Housing Finance Authority “take immediate action to incentivize adoption of the Universal Design standard to increase the supply of appropriately supportive accessible affordable housing in the state of New Hampshire; amend the (Qualified Allocation Plan) to require that projects funded under its aegis as ‘supportive housing’ set aside on-site housing for support staff; and take all efforts to incentivize the development and use of innovative housing materials, construction, planning, and development.
(Qualified Allocation Plan describes the process through which NHHFA allocates low-income housing tax credits to eligible affordable rental housing developments.)
There may be other sources of funding to help ease the crisis, said One Sky’s Cordaro, pointing to the efforts of U.S. Sen. Jeanne Shaheen’s office, which is “working on getting us appropriations for funding for housing … I can point to her office, and I can say there’s actual action there.”
Amanda Andrews can be reached at aandres@nhbr.com.
