When I was a teacher we had a student with cerebral palsy. I had Stephan in several classes through the years. He was in a complicated wheelchair with lots of straps and levers. He had few motor skills, no control over his bodily functions and couldn’t speak. His mother wheeled him to every class, managed all of his buttons and keyboards, and even lifted him out of his chair and moved him around so he could participate in PE and drama classes. She wrote for him, spoke for him, dressed him, fed him and was the only one who knew how to communicate with him. I viewed her with awe. I also remember wondering when the heck she found time to get her hair done. Or have a normal conversation. Or sleep. And then Stephan got too big for her to lift and I thought that surely there must be help available—somewhere.
It turns out there is help for families like Stephan’s, in the form of respite care. Respite care takes many forms: in-home help and supervision, daycare, drop-off programs and even camps, outings or classes. It includes any service that provides temporary care of a dependent elderly, ill or disabled person of any age. The central goal is to provide relief for the usual caregivers.
“Part of the reason people don’t seek support or resources,” says Mindy Kemp, director of the Division of Aging and Adult Services at Colorado Department of Human Services, “is that they don’t identify themselves as a ‘caregiver.” They are just doing what they do, caring for a parent or a child or a spouse and it doesn’t occur to them that they qualify for services.”
Another reason is that people feel like respite care support services are for other people—people with greater needs. They don’t want to be a “drain on the system” so they don’t seek support.
Joe Marquez admits to this reluctance. His son Justin, now 17, was born with a metabolic disorder that caused brain damage. While Justin was very young, Marquez and Justin’s mother divorced and he ended up as Justin’s primary caregiver. The mounting costs of Justin’s care forced him into bankruptcy, and the continual doctor visits and therapies made it almost impossible to maintain steady work.
“His needs were so intense. He couldn’t walk or go to the bathroom alone, he had to be tube fed and that didn’t always go well,” shares Marquez. “His aunt helped a bit but it was a lot to ask someone to take on. I felt like as long as I was coping I shouldn’t ask for help.”
Marquez has since remarried and while Justin’s current needs are moderate, he and his wife Michelle were reminded at a recent Easter Seals camp what it was like when Justin’s needs were extreme.
“Some families were just completely fried. They don’t even take a break to eat a normal meal or go for a walk,” recalls Michelle. “I get it. You think, ‘But what if my child needs me? No one can care for my child like I can,” which may be true, but you can’t care for him if you burn out.”
Benefits of Respite
The idea of “draining the system” is a critical misunderstanding. In fact, the opposite is true. One study found that if respite care delays institutionalization of a person with Alzheimer’s disease by as little as a month, $1.12 billion is saved annually (Leon, et al., 1998). A Massachusetts program providing respite care for families of children with complex medical needs found that in families participating for more than one year, the number of hospitalizations decreased by 75 percent, physician visits decreased by 64 percent and antibiotics use decreased by 71 percent (Mausner, S., 1995).
“We know that it’s very difficult to trust someone else with your loved one,” sympathizes Melanie Worley, CEO of Developmental Pathways and Respite Care Task Force member. “We just want people to know that quality respite care is a priority in Colorado. There are qualified people who really care—who can and want to help.” Worley recommends starting with a short break, even a half hour, until you build up trust with a care provider. “Without a break, caretakers absolutely reach the point where they can’t do it anymore.”
Research agrees. It shouldn’t be surprising that respite care helps sustain marriages, and keeps families together by delaying or avoiding out-of-home placement. Worley remembers a father who confided to her that before finding respite care he hadn’t slept in the same bed with his wife for over five years because someone had to be with their daughter at all times. “Honestly,” confesses Worley, “a lot of marriages can’t survive the strain of intensive caretaking. Not without a break.”
Far from draining the system, multiple studies indicate that respite care allows caregivers to continue to work outside the home, to keep themselves, their loved ones and their home environments healthier, and to contribute positively to their communities.
Rob and Joyel Chambers are the perfect example. Their middle son Joey has undiagnosed developmental cognitive and muscle delay. At 13 years old, Joey functions at a 3rd grade level academically and lower in most physical, social and emotional aspects.
“He’s a wanderer. He falls easily and he doesn’t understand his own limitations or have a realistic perception of danger, so he”ll touch the stove or walk into the street,” explains Joyel. Joey needs focused supervision 24/7, so quality time with her other two children or her husband can seem impossible.
She discovered Night Lights in Littleton. Once a month the Chambers dropped off their three children, where they were paired one-to-one with volunteers for an evening of activities, while Joyel and Rob had four luxurious hours to themselves. When their own children aged out, Joyel and Rob created an additional Night Lights group in Castle Rock. With enough volunteers they can serve up to 50 children a month. (Anyone can volunteer, contact firstname.lastname@example.org). Respite has been so crucial for their family’s well-being that they wanted to pay it forward.
Both the Chambers and the Marquez families have received support through Developmental Pathways, a Colorado nonprofit agency that provides a broad array of services and referrals to persons with disabilities and their families. Developmental Pathways works with hospitals and doctors, school districts, clergy—a long list of providers and organizations. Families meet monthly with a case manager who oversees and guides them according to their specific needs.
“Our case manager, Andrea, sometimes sends four emails a day with different opportunities for Justin,” explains Marquez. Justin’s needs have shifted, as he has gotten older. In 2014 he developed a psychiatrically induced seizure disorder and became suicidal from feelings of isolation and bullying at school. Programs like Beyond Classroom Walls where Justin practices social skills with peers and a therapist, and SOAR which provides regular group outings, have been central to Justin’s recovery.
Even with the vast array of support services, finding the right program or provider can still be a challenge. The Chambers family recently obtained a Medicaid waiver to pay for respite care in their home but were then unable to find a qualified provider in their area.
This is one of the challenges addressed by the Respite Care Task Force, established in July 2015 and concluded in January of 2016. Task force members spent six months assessing the dynamics of infant-to-elderly respite care services in Colorado.
The task force studied the issues of supply and demand, funding, return-on-investment, training of providers, availability of reliable providers and agencies, and overall awareness around respite care. They created a statewide “hot spots” map to help focus efforts where services are lacking and, not surprisingly, identified an inadequate supply of culturally and medically competent respite care providers.
“The biggest challenge is awareness,” says Worley. Providing respite care is a fulfilling and extremely flexible occupation that many people haven’t even considered. People who don’t have a friend or family member with care needs may not even know about this great opportunity to provide an essential service and earn income at the same time.
While there is currently no official certification process for respite caregivers, any Program Approved Service Agency provider goes through repeated trainings to ensure their competence in all areas.
“The majority of respite care providers are family members and friends, so requiring certification would prohibit this majority from providing care. The task force’s findings confirm that providing standardized trainings and ongoing funding is the biggest help to both the families and the potential providers,” reports Kemp.
In addition to standardizing training on the front end, the task force has simplified the process of locating an approved provider. Families simply enter their zip code into the respite locator (coloradorespitecoalition.org) to see a list of approved care providers in their area. This is a big improvement over what used to be a hit-or-miss process. Claudia Cochran feels like she was simply lucky several years ago, to find the help she needed for her son Ian, diagnosed at 2 years old with severe autism.
“I’m a teacher so I am very familiar with developmental milestones,” says Cochran. “I noticed Ian’s delays immediately and got him into Early Intervention. That was essential for his treatment and improvement and also in making it easier to get ongoing services. Being in the educational system I knew where to go for support and what questions to ask. Also, my parents live close by and they are very involved with Ian. And I pray a lot. I don’t know what I would have done without those advantages. It’s very hard for people who don’t have that and don’t know where to start.”
In addition to the respite relief that Cochran has gained for herself, Ian currently has a full-time classroom aide provided through Cherry Creek Schools. He attends summer camps, hippotherapy and other autism-focused classes and lessons. He even receives funding for educational aids like a specially designed keyboard. But Cochran emphasizes that nothing happens automatically. “You have to be persistent in asking and advocating for your loved one, and for yourself.”
“As a caretaker you’re all about the other person’s needs,” reminds Worley, “but if you don’t attend to your own needs you can’t sustain quality care for another person. The best thing you can do for them is take care of yourself. That’s what respite care is all about.”
Starting the Search
- The Colorado Respite Coalition website has information about providers and other resources along with a locator tool that allows you to enter your zip code for a list of needs-specific providers in your area.
- Your Community Centered Board can guide you to respite providers along with other respite services. All providers are thoroughly vetted and approved.
- Children’s Hospital has respite care in many forms: everything from day treatment to specific injury/condition camps and classes.
- Easter Seals provides respite care (and many other services) for all types of disabilities and special needs for people above the age of 6.
- A helpful guide to the types of care available, what to consider when selecting a provider, questions to ask, in-home vs. out-of-home, advice for working with agencies, funding options, articles on related topics and tips for success can be found at helpguide.org/articles/caregiving/respite-care.htm