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Bettendorf, IA 52722
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The Importance of Respite Care

June 13, 2017

Merriam-Webster Dictionary defines respite as “a period of temporary delay” or “an interval of rest or relief,” and respite care is typically defined as “services or programs provided by an agency that give primary caregivers temporary relief from caring for an individual with an illness or disability”. Respite care can range from out-of-home activities or programs during the day and evening, to overnight or weekend programs that give caregivers 12+ hours off, to in-home caregiving services which give primary caregivers a break and offer companionship and health assistance to the individual.

 

When you’re the parent or guardian of a child with special needs or a disability, you’re also a caregiver, and playing dual roles can sometimes become demanding, difficult, or stressful. Respite care is important in helping the whole family find balance because the individual attending programs or activities will be engaged in activities that work with their abilities (and may even increase their independence or social skills), and the primary caregivers have time for rest, to relieve stress, to run errands or do something for themselves, and to re-energize. As a parent, sometimes it’s hard to remember that you need to take care of yourself as well as your child, and respite care allows parents time to take care of their mental and physical well-being.

 

According to data pulled from various studies and put together by the National Respite Coalition Task Force, “6 out of 10 caregivers of children say caregiving limits the amount of time they spend with other family members and friends”, family caregivers “are more than twice as likely to report ‘usually or always’ feeling stressed”, and only 4 out of 10 family caregivers of children report their health as being excellent or very good [1]. Primary caregivers need to give themselves occasional breaks from their caregiving duties in order to spend more time with their other children (or spouses) and friends, as well as to lower their stress levels, both of which are good for their mental health. Breaks from caregiving duties also help parents and guardians focus more on their physical health, which not only means a happier and healthier adult, but a more balanced caregiver.

 

A benefit of respite care or day programs that isn’t always emphasized is the ability for parents and guardians to go work and not worry about the safety of their children while in the programs. In the survey, “Economic Consequences and Lack of Respite Care”, there is a connection between “the severity of a child’s disability and their parents missing more work hours than other employees” [2]. By finding respite programs that allow parents to go to work with peace of mind about their child’s safety, parents can limit some of the time they would need to be out of work to care for their child. For example, Hand-in-Hand offers an integrated summer program which provides Monday-Friday care and field trips for children on summer break, which allows parents to work through the summer even though their child isn’t in school. Kelley provides great insight into the importance of programs for participants of all ages and ability levels,

 

Despite being very proactive and steadfast advocates for Tyler, we found great difficulty in finding an appropriate setting for daycare for Tyler. Our challenge of finding care for a child with special needs was made exponentially difficult due to Tyler’s age. Chronologically he was too old for many fine, quality programs, and we don’t have family available during the daytime to help. An in-home program would not necessarily have an appropriate level of supervision or structured activities, and most people don’t offer all day programs with appropriate supervision for high school kids.

 

You can read the rest of Kelley’s story to find out more about their experience with finding Tyler appropriate respite care [3].

 

While the conclusion that respite care helps every parent feel less stressed and more balanced can’t be definitively made due to lack of substantial evidence, there is evidence that respite care provides significant reduction in stress for many parents[4]. In the “Stress and Relief: Parents Attending a Respite Program,” it was found that parents whose children were in respite services experienced “a sense of relief and having time for other activities” [5]. In addition, it can be a relief to parents to see how their child may thrive in respite programs. John O’Sullivan, national director of services with Enable Ireland, says “respite takes the pressure off [of families] -- plus it benefits the child with the disability. It promotes social interaction with other children, it encourages their own independence and helps them develop confidence.” [6]

 

Are you curious about respite programs and activities but aren’t sure how you’ll afford the care? Health insurance, Medicaid, and non-profit organizations can help most families afford respite care services. For instance, Hand-in-Hand has scholarships available (funded by donations from the community) so participants can attend programs and activities even if they might not be able to afford them on their own. If you qualify for Medicaid, many respite care programs will be at least partly covered, and you can always check with your insurance company for coverage as well. At Hand-in-Hand, we have an HCBS Case Manager on staff who can work with you and your Medicaid case worker to find the respite programs that your child qualifies for, and other organizations which provide respite care should be able to point you in the right direction on this as well.

 

Respite care offers many benefits for you and your child, and the cost can oftentimes be brought down significantly or be covered by Medicaid or insurance. If you think respite care might be a good fit for your family, Hand-in-Hand would love to help you navigate the programs we offer. Between integrated child care, day programs for children and adults, and evening and weekend programs that encourage independence, having fun, learning new skills, and becoming healthier and more active, Hand-in-Hand likely has something that will work for your child and help you with caregiving duties. We want to see your whole family be happier and healthier, and respite care can help you get there.

 

 

 

[1] http://www.amchp.org/Calendar/Conferences/amchp-conference/Handouts2012/Sunday/E04%20-%20CYSHCN%20-%20Part%201%20-%20Handout3.pdf

[2] http://www.amchp.org/Calendar/Conferences/amchp-conference/Handouts2012/Sunday/E04%20-%20CYSHCN%20-%20Part%201%20-%20Handout3.pdf

[3] https://www.handinhandqc.org/kelleysstory

[4] https://link.springer.com/article/10.1023/A:1014467226528

[5] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3490527/

[6] http://www.irishexaminer.com/lifestyle/healthandlife/parenting/respite-care-benefits-for-children-with-disabilities-359372.html

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