Families lament end of a 'lifeline’ for disabled Michigan children, adults

• A long-time respite center for young people with disabilities — a ‘lifeline,’ says one mother — has announced it will close
• The Lahser Respite Home for Children had operated for four decades, offering temporary relief for exhausted parents and caregivers
• State policy and continual financial losses forced the closure, according to leadership

Insufficient finances and an unexpected policy decision from the state are forcing the closure this fall of the last respite home in southeast Michigan for children and young adults with developmental disabilities, according to its leadership.

The Lahser Respite Home for Children has provided a reprieve for parents of children whose care was often round-the-clock. It is “a lifeline,” said Heather Webber, whose son, Eli, 14, has been spending a weekend or so each month at the home for about eight years.

Initially misdiagnosed with cerebral palsy, Eli has a rare genetic disorder, CTNNB1 syndrome. He uses a wheelchair and a communication device.

“We’ve had caregivers, but they move on,” his mother said.

For Eli, the respite home in Beverly Hills, Oakland County, offers a familiar surrounding outside of his own home, offering his parents time to refuel — and him, time to make new connections.

“He loves it there, and the staff is wonderful,” Webber, a Rochester Hills music teacher, told Bridge Michigan.

But the Farmington Hills-based Judson Center, which operates the respite home as well as a wide array of behavioral health, foster and adoption treatment and vocational services for individuals and families across southeast Michigan, had little choice, said Lenora Hardy-Foster, Judson’s president and CEO.

Judson’s $31 million budget each year had to cover the $70,000 to $100,000 losses at the respite home, which employed six full- and part-time staff. It also had to pay for insurance, utilities and maintenance on the six-bed home as though it operated around-the-clock, even as most families used it primarily for weekends.

Still, the biggest change came earlier this year when, after 38 years, a new inspector reviewed the operation — and asked state attorneys to review a waiver, or “variance”, issued by what was then the Michigan Department of Social Services, that had allowed Judson to serve people under 18 as well as people 19-26 years old at the same facility, said Hardy-Foster.

The Michigan Department of Health and Human Services, which oversees the Medicaid coverage that pays for respite benefits for people with disabilities, did not renew the waiver.

Just more than half of the clients were in the older age group — and, effective this spring — were no longer able to stay at the home, Hardy-Foster said.

“I felt like the state hated the decision, too, but it didn’t want to go against legal (advice),” she said.

But a spokesperson for MDHHS released a statement to Bridge indicating that state officials, in fact, were unaware that Lahser had been accepting both adults and minors. Doing so violated the Child Care Organizations Act, which says a child care institution may only accept minor children for care and custody, according to an email provided by MDHHS’ spokesperson Erin Stover.

“The agency was made aware they were in violation of Michigan statute, and they were asked to cease admission of anyone over age 17,” according to the email.

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Ultimately, Lahser would have to “request a change to their licensing terms” or only provide services to those 18 and over, according to the email.

Hardy-Foster said the center enjoys a good relationship with the state, but it’s “impossible” that the state didn’t know of Lahser’s clientele: “They come out every year. They look at the paperwork every year. They know who is there.”

Hardy-Foster said Lahser faced another challenge, too: Parents of younger children have increasingly in recent years preferred to have respite workers come to their homes.

With the loss of the older clients, in addition to the dwindling interest in Lahser services for younger clients, Judson predicted a $250,000 loss for the respite home over the coming year, Hardy-Foster said.

She sent a letter to families this week, saying she did so with a “heavy heart.” The home will close effective Sept. 28, she told them.

“We have worked very hard to be a place you felt comfortable leaving your child to be cared for and that you had all the confidence that it was a good home with quality and dedicated staff providing care for your child. Regretfully, with the withdrawal of the Variance that allowed Judson Center to continue serving children through the age of 26 as well as declining program utilization levels over the past few years has led us to no longer being able to sustain the program operations,” she wrote.

Still, some parents said more could have been done to keep the respite home open — fundraising or more publicity to drive awareness and clients to Lahser. A change in state law that would have allowed the respite home to continue to serve people until they were 26 would have provided a more permanent solution, too. 

Lost opportunity

For Dave and Cindy Maurice, Lahser would have meant having someone to care for their son, William, 19 next week during the visitation and funeral for Dave Maurice’s mother, who died Saturday. Because of the state’s decision not to renew Lahser’s waiver, William is now too old to receive services at the respite home. 

William has multiple impairments. At 140 pounds, he must be diapered and his food specially fixed. He has outbursts of frustration and happiness, meaning — for example — that everyday errands, house chores, or attending church and funerals require logistics that most parents never must consider. The couple went on a short vacation last year — the first in decades, because of respite that Lahser provided, David Maurice said.

“Now we’re in the position that we won’t have that option anymore,” said Maurice, who with other parents had been fighting to keep the respite home open.

“We've given them all kinds of really good ideas,” he said. “We got advice from lawyers. We did all kinds of work. We got the Legislature involved, and nothing. Nobody's willing to take ownership of this,” he said.