A 29-year-old man with cerebral palsy has been in WakeMed for more
than three months waiting for an affordable, safe and supported home.
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| Tylor Freeman in happier times. Credit: Tylor Freeman |
by
Rose Hoban
Tylor Freeman would like to go home.
His problem? There’s no home to go to.
Instead, the 29-year-old has been cooling his heels at WakeMed hospital in Raleigh for more than 100 days.
Freeman’s odyssey began last fall when he needed to have a minor
medical procedure. He has cerebral palsy, along with having a history of
anxiety and depression. He was living in supported housing with a
roommate in Burlington, a situation where he alleges that the caregiver
working with him was abusing alcohol.
So, after his procedure was completed at a hospital in Concord, he
refused to return to where he had been living. His family’s dynamics
preclude him living with any immediate family members.
Because he didn’t have a home to return to, he first tried living
with friends out of state, but that became complicated for him and for
his friends, given his extensive care needs and the limitations of what
state Medicaid programs can pay for outside of North Carolina. Freeman
uses a power wheelchair and needs assistance with everyday activities
such as bathing, using the bathroom, dressing, preparing food and more.
“I can feed myself as long as it’s cut up. Soup, cereal, that’s kind
of tough,” Freeman said. In the past, he said, he’s been able to use a
urinary bag system, as long as it doesn’t leak. “So I could be left
alone for a couple of hours, as long as I’m in my wheelchair.”
Freeman spent time in a South Carolina hospital, which eventually
threatened to discharge him to a homeless shelter. That’s when friends
in Raleigh suggested he make his way to the Triangle. On March 5, he got
onto a Greyhound and made his way to WakeMed hospital, where he was admitted to be treated for bladder and body pain.
That’s where he remains, even though his medical issues were taken care of long ago.
Freeman’s not alone in his predicament.
For years, people with disabilities have been getting stuck in
treatment facilities across North Carolina, even as they strive for the
opportunity to live independently.
The federal Americans With Disabilities Act, passed in 1990, and
subsequent Supreme Court and state court rulings require the state to
provide services and housing to people with mental health disabilities.
One of those rulings is part of a 2012 lawsuit settlement
with the U.S. Department of Justice and North Carolina to ensure that
such populations are able to live in the least restrictive settings of
their choice. The landmark U.S. Supreme Court Olmstead decision
in 1999 laid the foundation for such a settlement by prohibiting the
unnecessary segregation of people with disabilities and underscoring
their right to receive services within their communities.
Bumping up against all those legal mandates is a profound lack of
affordable housing in North Carolina, including in Wake County — where
the median home cost $474,750 in April, and rent easily tops $1,200 a month (according to Zillow).
Both hospital and state officials say that’s the primary reason they’ve
had trouble finding a place for Freeman, on top of a shortage of direct
service professionals to provide him with the help he needs to live
independently.
And though the state has made efforts to help Freeman and others in
similar situations, it continues to be challenging for those who want to
help him. Even if there is a physical place to go, given Freeman’s
challenges, not every place is the right one.
“I lived in several places that were not accessible … you know, I
couldn’t fit in the bathroom [with his motorized wheelchair],” he said.
So, Freeman sits at WakeMed, at a cost to taxpayers that’s easily
running into the hundreds of thousands of dollars — sums approaching the
price of building or buying him his own place.
Court rulings and federal law
North Carolina’s system of care for people with mental illness,
intellectual and developmental disabilities has been in crisis for the
past several decades. Part of the turmoil has been driven by the limited
amount of appropriate housing available.
In the past, North Carolina relied on adult care homes, group homes
and large state-run facilities to house people who weren’t relying on
family members for care. That situation spurred the 2012 action by the
U.S. Justice Department, which found that North Carolina had an
“institutional bias” for providing care — something that contradicts the
Americans with Disabilities Act and the Olmstead decision.
Despite those rulings, North Carolina has continued to lag in creating housing opportunities for people with disabilities.
In 2022, a judge forced the state’s hand with the Samantha R ruling, saying that North Carolina needed to provide more in-home disability services over the coming decade. That ruling was reinforced by a settlement between North Carolina Disability Rights and DHHS this spring.
That means there’s money for Freeman. He’s eligible for services under the state’s Transitions to Community Living initiative, which came out of that 2012 Justice Department settlement. He’s also one of the fortunate recipients of a place in the coveted Medicaid Innovations Waiver program,
which provides extended services for people with disabilities so they
can live and thrive in their home communities. Finally, he’s eligible
for funding under the state’s Money Follows the Person program, which provides funds for people like him to have a home and services to keep him there.
In theory, Freeman should have multiple avenues to get a place, but theory and reality often don’t match up.
“We in the disability community want the same ability to make these
choices as individuals who may not have a recognizable disability,” said
Julia Adams, a lobbyist at the legislature for people with disabilities
who also is someone with a disability. “The problem that we have is we
do not have enough housing options that allow for choice.”
“Even for those lucky people with an Innovations Waiver slot, it’s no magic ticket,” said Corye Dunn, the policy lead for Disability Rights North Carolina.
“Our community service system is thin and desperately in need of
investment to ensure a waiver slot provides meaningful access to
services and supports.”
Inappropriate placements
WakeMed and Freeman’s state-supported managed care organization
(known as an LME-MCO), Alliance Health, are the organizations that have
the responsibility to find Freeman housing. And, to a certain extent, so
is the state Department of Health and Human Services.
“The people at Alliance keep saying, you know, ‘Oh, we’re looking,
we’re looking, we’re looking,’” Freeman said. “They are telling me
because my case is so complex for [Transitions to Community Living],
they are telling me now there is a barrier. The occupational therapist,
the physical therapist have to look at my case, before we can move
forward.”
Alliance declined to discuss Freeman’s case, telling NC Health News
that the organization maintains “an organizational policy of not
discussing the treatment of our members in the media even if a member
formally authorizes us to do so.”
Freeman said he’s been offered group home placement or placement with a family that’s not his own — neither of which he wants.
“Not every individual wants to live in a group home or an Innovation
Waiver group home, because maybe that is not where they are at this
point of their lives,” Adams said. “They have relationships. Some of
them have boyfriends, girlfriends. That’s difficult in a group home
setting.”
That’s the case for Freeman, who said he has a boyfriend in the
Triangle area. He said they’re not at a place in their relationship
where they could live together.
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Tylor Freeman has worked on statewide initiatives to reform North Carolina’s guardianship program, in addition to other
advocacy efforts. Now he’s advocating for himself. Credit: Rose Hoban |
Housing shortage gums up other priorities
WakeMed Chief Medical Officer Charles Harr said they see situations
like this too often, where the hospital has trouble finding a place for
patients who are being discharged.
“Some of them are from people who have physical disabilities and
require differing levels of care, or they’re close to independent but
not totally independent,” Harr said.
Harr said he knows the hospital isn’t the right place for Freeman, but they’re not going to just turn him out.
There are a “significant number of folks who come in who don’t have a
medical need,” Harr said. “Maybe it’s behavioral, maybe it’s
homelessness, whatever has brought them to the emergency room, people
just don’t know what to do.
“Those we do not admit to the hospital, we maintain them in the
emergency department until we can get appropriate placement for them.”
But Harr said that this reality means that often people sick with
medical issues end up waiting in the emergency department for a bed
upstairs that’s occupied by someone who’s simply waiting for someplace
to go.
“That’s happening to us one to two to three times a week now,” Harr said.
And he said he’s not sure how to undo this Gordian knot that’s tied his organization’s hands.
“We as a hospital can’t force the patient to take an option, on the
other hand, we have no … we have no sway over who the LME-MCO is,” Harr
said. “I mean, Alliance, they’re getting money from the state, they’re
placing people. So we’re collateral damage, just like those patients
are. Because we can’t make anybody do anything in that situation.”
Harr estimated that the cost for Freeman’s care had long ago passed the $150,000 mark.
“A hospital’s an expensive setting for care, and it is the most
restrictive setting for someone to be in,” Adams said. “A hospital is
not supposed to be a housing option.”
Piecing it all together
“Housing is really complex,” Kelly Crosbie, head of the Division of
Mental Health, Developmental Disabilities and Substance Use Services for
the state health department, told NC Health News.
Crosbie said her department has been able to get thousands of people
with disabilities out of congregate settings and into their own housing —
with supports — over the past decade.
“We’ve invested lots of money, not only in housing, but also the
transitional supports to get folks housing, and then the supports to
help people maintain their housing. And lots of people’s lives have been
changed dramatically,” Crosbie said.
But there still are an untold number of people like Freeman, who
still don’t have the right housing or direct support workers to help
them once they’re there.
“For folks who are lucky enough to have an Innovations Waiver slot,
we still have problems staffing those slots because of direct care
workforce shortages,” Adams, the lobbyist, said. “An innovation waiver
slot does not really, you know, does not provide the array of choice for
the housing portion.”
Crosbie noted that the department is launching a program to encourage
people to become part of the direct support professional workforce. The
department has also developed other plans and resources that they’re
putting in place to create options for people like Freeman.
While she said that she can’t speak directly about Freeman’s case, she did say that she was aware of his situation.
“Now we have to make sure that housing stock is available, people
know their choices and we have enough workforce to support people in
this kind of independent living situation,” Crosbie said. “We don’t do
housing, per se, but we’re trying to work with housing people to make
sure that we have safe stock for people that have accessibility issues.”
But all these future plans don’t address what Freeman needs now, which is a place to go.
“Until we sit down and have a real conversation about how do we
provide choice, and supports, we are going to have folks who have a
waiver and still have limited options,” Adams said.
“The entire reason why we have an innovation waiver is to provide a
robust home and community-based support setting for folks. But we’re
still not meeting that,” Adams added.
Freeman said he’s hanging in there after being in the hospital for
months, but the wait is wearing on him. Recently he found an agency that
will provide him with a personal care aide. All he needs now is a place
to go.
“I’m just speechless,” Freeman said. “But I will continue fighting.
I’m fighting not just for myself, I’m fighting for other people. Because
this is ridiculous.”
Full Article & Source:
Stuck in a hospital, hoping for a place of his own
