For the past 23 years, Krista Assman has devoted herself to caring for her son Skyler. Born with a rare genetic disorder, mitochondrial disease, Skyler lives with profound disabilities. Assman meets his every need: transport from wheelchair to bed, personal care, tube feeding, and monitoring his oxygen levels every night as he sleeps in a special zipper-enclosed bed that prevents him from falling on the floor. As an only parent, being able to take an occasional break from caring for Skyler has been invaluable for Assman.
“As parents raising children with disabilities, we’re hands on 24/7 with our kids from the time they’re born until adulthood. The care that they need doesn’t stop as they grow. It tends to get a little harder as they get bigger,” she says. “Sometimes, [extended] families kind of fizzle out as kids get older. It’s harder for them. They can’t handle it long-term. Respite gives the parents a break so they don’t get burned out.”
The term “respite care” refers to temporary caregiving that provides a break for a person’s usual caregiver. For Assman and countless other Michigan caregivers, respite care is vital – but can also be challenging to find. Assman accesses respite care for Skyler through Network180, a program of the Kent County Community Mental Health Authority. Parents of children with disabilities are allotted a set number of respite hours each month and can choose how to use them – for example, a few hours here or there, a day at a time, or a full weekend.
Because of his specific needs, Skyler cannot take part in overnight respite programming outside of his home – for example, weeklong summer camps. He has gone to day camps and, until the agency dropped the program, he especially loved horseback riding through an equestrian therapy program.
“It has definitely helped me tremendously to be able to get out and get a break. Skyler doesn’t go to school during winter months, so having home-based respite services helps me to go to the store to get groceries or anything that is needed for the week,” Assman says. “When caring for a child with disabilities, respite gives us a break to go and do what we need to do.”
Intense caregiving needs
Susan Salhaney, chief operating officer of the Farmington Hills-based Judson Center, says caregiving “really is so intense” for parents of children with disabilities.
“Some children need ‘round-the-clock attention, both to meet their medical needs and supervisory needs,” she says. “That intensity really makes for a tremendous amount of stress. You can’t be a healthy caregiver if you are not taking care of yourself.”
Judson Center is a human service center that offers programming in 29 Michigan counties. Since 1986, the center has hosted children with disabilities at its Lahser Respite Home for Children in Beverly Hills, Mich. Community mental health agencies in Wayne, Macomb, and Washtenaw counties refer children and adolescents to the home for respite care. The three-bedroom ranch home fits right into its residential neighborhood. Up to six children at a time stay at the home for stints ranging from a night to a week.
“For many of the families we serve, we end up being a support to them for many years. Some families tell us that we are like extended family,” Salhaney says. “Lahser’s highly trained staff have been with us for many years. They are trained individually on the needs of each child.”
In her role as a parental-support volunteer with the Michigan Department of Health and Human Services Family Center’s Family Leadership Network, Assman encourages parents arranging their child’s first respite experience, whether at home, in a facility, or at a camp, to spend as much time as they need to feel comfortable that respite caregivers can meet all of their children’s needs. Assman also provides peer support to parents as a Michigan ambassador with the United Mitochondrial Disease Foundation.
“In the beginning, when it’s someone new, it’s hard to leave your child. I always plan on spending time training them so they can get to know Skyler and he can get to know them,” Assman says. “It’s very nerve-racking to have a stranger come and care for your kid. There’s no reason why you can’t be in the same room. I tell parents, ‘You leave when you feel comfortable.'”
A federal focus
Although programs like Network180 and Lahser Respite Home for Children offer some respite options for Michigan caregivers, many see room for expansion and improvement of respite services in the state. Located in Annandale, Va., the Access to Respite Care and Help (ARCH) National Respite Network and Resource Center is a federally funded center providing training and technical assistance to state agencies that offer respite services. Its online resources include a National Respite Locator and guides to finding respite for various types of caregivers. ARCH also helps states build respite coalitions that connect family caregivers to respite opportunities.
“We have been trying to build a coalition in Michigan for a long time,” says ARCH Director Jill Kagan.
Kagan would like to see more respite opportunities made available to family caregivers. She notes that while respite care can be a covered Medicaid expense, most private insurers don’t cover it because of the high costs and low profitability. Some long-term care policies might cover respite care, but those policies are expensive to purchase. So, for families hovering above the poverty line or even those considered middle-class, respite care is not usually an affordable option.
“The other huge barrier, even when families have the resources to pay, is they can’t find the providers,” Kagan says. “They are so under-compensated and undervalued. My own mother lost an aide because she could make more money working at a clothing store. It’s hard work for the dollars and might be intermittent.”
A dire need for more respite opportunities
Indeed, many of the families Assman works with are unable to access the respite care they desperately need.
“There are not a lot of respite care workers out there. The turnover is pretty high. They are not being paid enough to help care for our kiddos,” says Assman. “It’s been very, very difficult for a bunch of families that I know. They are not poor enough to qualify via Medicaid. They are stuck paying for respite services out of pocket but can’t afford it. Even for many of the families who are Medicaid-eligible, the respite hours allowed are kind of a joke. There should be more [respite] hours. Three hours is better than zero, but it’s not enough for a family to do what they need to or get the break that they need.”
As children with disabilities grow up, parents grow old. The need for respite care becomes even more urgent.
“Adult children with disabilities come with the same high level of needs but the parents are aging, the children are aging, and it comes with another whole level of caregiving stress when you have to meet the daily needs of an adult,” Salhaney says. “If you’re an older parent who has to help physically transfer your adult child from a bed to a wheelchair or shower chair, it does require a level of physical exertion that, as we age, we don’t always have.”
Assman says that if she had a magic wand, she would get Skyler back on a horse – and make respite more available to all parents taking care of children with disabilities, no matter their income or the age of their children. Salhaney agrees with the latter point.
“It’s so important to take a break. It’s OK to take a break. It makes you a stronger caregiver,” Salhaney says. “… I would make [respite care] open to anyone who needed it, regardless of ability to pay or insurance status, so that we would just be able to provide this service to individuals who need it and let the reimbursements figure themselves out.”