Keenan: Parents of special needs children raise money to keep respite care facility open
When Lizzie Andrea was born 19 years ago, she had seizure upon seizure for the first 12 hours of her life. By the time doctors arrested the culprit — spinal meningitis — Lizzie had suffered irreversible brain damage. Ever since, her cognitive impairment has been in the moderate to severe range.
Lizzie cannot converse. She cannot care for herself. She cannot be left alone or unsupervised. When Dave Andrea, Lizzie’s father, leaves home, her mom stays with her. The reverse is also true.
Should Dave and Katie want to spend a night together alone, they have only one option: the Lahser Respite Home in Beverly Hills.
Lahser Respite Home is a three-bedroom ranch where highly trained, compassionate staff can care for up to six special needs children from a few hours to several days. Staff provides relief for families from the often intense care required of a child with a developmental disability or autism.
“Lahser home is not a luxury,” says Katie Andrea. “For many of us, it’s a necessity.”
Similarly, Debbie Smith of Clawson says Lahser Home is a “God-send.” Smith’s daughter Madyson, 14, has been coming to Lahser Home since she was 5. Born with an undiagnosed genetic syndrome, Madyson “cannot walk. She cannot talk. She cannot even voice an opinion verbally.
“This is the only place we can bring Madyson outside of home,” Smith says. “The staff is so wonderful it’s like I’m bringing her to her aunt’s. I feel 100-percent safe leaving her here. “
For the last two years, these families have been living with the very real fear that Lahser Home may close its doors because of cuts in state funding. Quite simply: “We would be devastated if they were to close,” Smith says.
In 2013, the Judson Center, the health service agency that operates the Lahser Home, was forced to slash 10 percent of the respite home’s budget. In addition, financial aid used by many of Lahser Home low-income families to help pay for their respite care, also was cut.
Currently about 65 families are serviced by Lahser Home. But because those cuts have meant an increase in out-of-pocket costs, about a third of those families can’t afford the break in care for their children they so desperately need.
Dave Maurice is father of 9-year-old William, born with cerebral palsy, the last of seven children in a family who live in Royal Oak. “Lahser home is not just a resource, it has rescued us,” Maurice says. “William has myriad challenges, and they take such good care of him. It actually gives us some of our life back; we can reinvest time in the rest of our family.”
That first year Lahser Home was in trouble, corporate donors covered the operating budget for a year. In 2015, faced with a $120,000 shortfall, parent advocates joined staff at Judson Center and started fundraising like crazy. The campaign has included a media blitz, a fashion show at Saks Fifth Avenue, a skeet shooting benefit and an upcoming trunk show at Talbot’s in Somerset.
While the fundraising effort has been enormously successful (Frank Castronova of donor relations at Judson says they are close to $110,000), this kind of scrambling year to year is certainly not sustainable.
Nor, it certainly could be argued, do these families deserve the added burden of having to worry about Lahser Home to their already full plates.
Secure that they will meet their goal to keep the respite home open through 2016, the plan is to develop a fund to help low-income families make up for the loss in financial aid and to establish a lasting endowment so that in the words of Katie Andrea: “We don’t have to focus just on just staying alive for another year.”
As it now stands the stakes are just too high. Not only is Lahser Home the only service of its kind in Oakland County, in a business where burnout is rampant and turnover is constant, the workforce here has uncommon longevity. Laura Roehler, the director of Lahser Home, has been there for 28 years; the assistant manager has 20 years in; and a majority of staff have five-plus years.
Roehler says the stability is due to “families who feel staff is an extension of their family, and staff who feel the same way in return.”
By anyone’s measure that’s irreplaceable.
“I can tell you that it’s once this home goes away, you will never bring it back,” Roehler says. “Once it’s gone, it’s gone.”