Rain is pouring down as Rick Mereness stands in front of his White Bear Lake home on a Friday afternoon, waiting for the bus bringing his daughter April home from her job with a program for developmentally disabled workers. April, 24, is quadriplegic with cerebral palsy, mild retardation, and some behavioral issues—all the result of being deprived of oxygen during the first five minutes of her life.
When the bus stops, the driver activates the system that lowers April down to the ground in her wheelchair. Holding an umbrella, Rick steers April’s wheelchair toward the house where Bonnie, his wife and April’s mother, is waiting. Once inside, April has demands—she’s hungry and needs to go to the bathroom.
April has a ready smile and outgoing personality when she’s feeling good. But when she’s cranky, like today, she keeps up a steady chorus of demands. “I want my crackers,” she cries. “I need to go to the bathroom.” Even after her requests are met and she’s taken to her bedroom for a nap, she calls out for her mom or dad as often as every ten minutes.
“Respite care has allowed us to keep our sanity.”
Through it all, Bonnie and Rick maintain good cheer and respond promptly to their daughter’s needs. For their family, it’s just another day. But even April’s parents can’t handle the pressure 24 hours a day, seven days a week. So once every four to six weeks, April spends a few days at the Northeast Residence (NER) Short-Term Respite Care Program so parents and child can have a break from one another.
Bonnie and Rick, who have been caring for April since her birth, need that time. “Northeast is our saving grace,” says Bonnie. “It’s allowed us to keep our sanity.” They have been using NER Respite Care since April was 14, and they found it especially valuable when their two other children—sons Joshua (April’s twin) and Jason, who are now grown—were children. April has benefited as well, independently learning social and living skills that she’ll need when Bonnie and Rick can no longer care for her.
Preventing crises, saving families
There are about 50 other families like the Merenesses currently using the NER Short-Term Respite Care Program, which provides overnight care for persons with developmental disabilities. The program is based in a facility in Little Canada that has the cozy feel of a single-family home. The program can serve six clients at a time, with two rooms equipped for individuals in wheelchairs.
Clients range from age 5 to 85, with the majority staying four to six days. Clients can stay as long as 29 days, but that is rare. Most clients are from the five-county metro area, though NER Respite Care is open to all Minnesota residents.
Like other respite programs, NER Respite Care provides support and short-term relief for parents or other personal caregivers to attend to their own needs—health needs, social needs, emotional needs—as well as those of other family members.
“We have families who felt they could do all this on their own, that they didn’t need any outside assistance—only to have their family fall apart.”
Despite the rather benign-sounding name, respite care isn’t just “nice to do,” says Corrine Schmidt, administrator of Northeast Residence Inc.—which also operates 23 long-term care facilities and three extended day/summer programs in the northeast metro area. In fact, she adds, “don’t equate the day-to-day care of a person with disabilities to an office job or [equate] ‘respite’ to ‘a vacation.’”
Caring full-time for someone with disabilities is very stressful and takes a physical, mental and emotional toll on caregivers and families. “Families have specifically told me, ‘we would’ve been divorced if we didn’t get respite,’” says Schmidt.
NER Respite Care staff note that respite care is a preventive strategy, helping families stay healthy and avoid crises while keeping their developmentally disabled children at home as long as possible. “We have families,” says Carla Pleasants, a qualified mental retardation specialist with the program, “who felt they could do all this on their own, that they didn’t need any outside assistance—only to have their family fall apart.”
According to Pleasants, one couple came to the respite care center only after their daughter revealed that she had been assaulted but did not feel comfortable talking to her parents about the incident at the time because she felt they had enough to do dealing with her developmentally disabled sibling. “That’s when the parents broke down and said, ‘We can’t do this alone,’” says Pleasants. “They realized they have other children to care for too.”
Finding funding: “A square peg trying to fit into a round hole”
NER Respite Care is the only stand-alone program of this type in Minnesota that’s also classified as an “intermediate care facility for persons with mental retardation or related conditions” (ICFMR). The ICFMR classification means NER Respite Care receives federal, state, and county funding normally given only to institutions or long-term care facilities.
It’s this combination of the ICFMR classification and the stand-alone feature that makes NER’s respite program unique; other ICFMR short-term respite programs exist across the country, but typically they are housed in the same buildings as long-term care facilities. The situation stems from the NER Respite Care Program’s founding (under a federal grant) in 1981 as an ICFMR.
Long-term care facilities often include a few short-term beds for respite care, but “our belief was that if I live in a home, I don’t necessarily want strangers coming in and out all the time. We wanted this to be a home away from home exclusively.”
The stand-alone feature was a key objective from the start, says Schmidt. Long-term care facilities often include a few short-term beds for respite care, but “our belief was that if I live in a home, I don’t necessarily want strangers coming in and out all the time. We wanted this to be a home away from home exclusively.”
The hybrid status of providing short-term care but being classified as a long-term care facility is a blessing and a curse, allowing the respite care program to receive funding under the ICFMR umbrella but imposing additional administrative requirements and costs due to the unique status. It’s a money-losing proposition—like “a square peg trying to fit into a round hole,” says Schmidt.
Nevertheless, she adds, the NER Board of Directors “feels strongly that respite care is such a huge need, that it’s our job to find a way to make it work. So we go out for additional support from foundations, corporations and private donations. We wouldn’t be here without them.”
Growing needs, shrinking funding
Although the NER Respite Care Program has served hundreds of families over its life, that’s a drop in the bucket of the estimated unmet need for respite care in Minnesota, where about a half million family caregivers provide continuous care to family members with disabling and chronic conditions.
Besides respite beds in long-term care facilities, respite care options include in-home respite care, emergency respite, sitter-companion services, and therapeutic adult day care. Many of these services can be funded through Medicaid “waivers”—so-called because of a 1981 federal law that allows people in need to use Medicaid funding normally disbursed only to institutional programs. The law allows states—including Minnesota—to use these Medicaid funds for home- and community-based services as alternatives to institutional settings.
Unfortunately, the state budget is tight and funding for anything beyond health and human service “basics” is extremely hard to find.
“When families have serious problems and dysfunction, we all pay for it in some way or another. We may pay for it in chemical dependency treatment; we may pay for it in AFDC; we may pay for it in mental health treatment.”
Like others in the respite care field, Jonathan Janssen, supervisor of NER’s Respite Care Program, and Gail Hays, the program’s staff development coordinator, find the funding situation frustrating. They note that, while the per-client daily cost of respite care is up to $100 higher than the cost of long-term care, the total cost of intermittent use of respite care over the course of a year is much less than the cost of full-time placement for a year—which many families might need to seek if respite care were not an option.
Just as important, they argue, respite care avoids all the additional costs the community and taxpayers can incur when family members caring for developmentally disabled children don’t get any relief. “When families have serious problems and dysfunction, we all pay for it in some way or another,” says Hays. “We may pay for it in chemical dependency treatment; we may pay for it in AFDC; we may pay for it in mental health treatment. So I would much rather see the dollars go up front [to respite care] and provide quality of life to everybody involved before it ever gets to the point where we have to pay on the back end for people’s lives falling apart.”
Janssen adds, “Most people I talk to realize that respite care is cost-effective. It hasn’t been the fault of our program [or other respite care programs] for not being cost-effective; it’s the fault of the government for not providing enough money.”
Challenges at the Capitol: Federal cuts and competing constituencies
Minnesota Representative Neva Walker, a long-time member of the House Health and Human Services Committee and the current chair of its Mental Health Division, agrees that government—both state and federal—has not adequately funded preventive health and human services programs like respite care.
Needs are growing, costs are rising, and funds are shrinking, she says. “It’s not that folks [at the Legislature] don’t care about all these services, but the pressure to pay things like nursing home costs is so real and the cuts that have been happening federally have been damaging to us—especially at the county level.”
There’s a limited amount of money, she says, and when a need for immediate measures (such as paying nursing home staff salaries) conflicts with a need for preventative measures (such as respite care), the immediate need wins out. Politics plays a big part, too, especially for House members—who run every two years and are subject to pressures from competing constituencies.
When a need for immediate measures (such as paying nursing home staff salaries) conflicts with a need for preventative measures (such as respite care), the immediate need wins out.
Still, says Walker, more legislators are seeing the need to increase funding for preventive health and human service programs—such as respite care—to avoid greater costs and human suffering in the future.
“On Health and Human Services, we’ve made a commitment to start looking at more of the things that will cost us money upfront but save us so much more money long term,” she says. “There are members who want to look at the long term; it’s just trying to figure out how to balance everything that’s in front of you.”
She urges parents and other advocates for respite care to contact legislators—especially legislative leaders, who need the most education on the issue and hear most often from constituents with other demands. “They get pressure from nursing homes, they get pressure from labor and from business,” she says. “They get pressure from all those constituencies, and they need to get pressure from [respite care advocates] too.”
“We’re so grateful”
John and June Martin began taking their developmentally disabled daughter, Karen, to Northeast Respite Care in 1985, when Karen was 13.
Not only did NER’s respite service give the Martins breaks from providing care 24/7 for Karen, use of that service allowed them to devote the necessary attention to their other three children as they were growing up. Northeast Respite Care also gave Karen, who’s now 36, the social and living skills she needed to live independently in the group home where she now resides.
“We’re so grateful for the help we got from Northeast,” said John, a retired teacher from North St. Paul. “My heart breaks for the families who are still on waiting lists for respite.”
Mary Vitcenda (firstname.lastname@example.org) is a freelance writer based in St. Paul with experience in business and medical communications, as well as newspaper reporting. She specializes in health care issues, but is curious about lots of things and is willing to write about virtually any subject.