With Mother’s Day just around the corner, many of us are buying cards or gifts and planning meals or excursions to pay tribute to the mothers in our lives. Those of us who are mothers ourselves may be contemplating the joys of motherhood, while also looking forward to some TLC from our children, spouses or partners. Despite our love for our families, sometimes Mother’s Day TLC means getting away from the people we love most. Like the old TV commercial with the mom in the bath tub who asks her Calgon bath oil to “take her away,” sometimes mom just needs a break, some time to herself, and a chance to let go of both personal and professional responsibilities.
Getting away from it all is hard enough when your child doesn’t have significant disabilities. It’s a whole lot more complicated when your child has special emotional, behavioral or physical needs. It can also be even more essential to your health, the health of your family and ultimately, the health of your special needs child.
Finding care for a child with special needs is not as simple as calling the teenager down the street, or asking a grandparent to pitch in. When a child has complicated health issues, it’s essential that whomever is in charge, has the skills or training to keep them safe and contented.
One way to find care you can count on, is by taking advantage of respite care. Just what is respite care? According to the ARCH National Respite Network, “respite is planned or emergency care provided to a child or adult with special needs in order to provide temporary relief to family caregivers who are caring for that child or adult.”
Sadly, despite the documented physical, emotional, psychological and spiritual health risks to caregivers who don’t make time for themselves and their own needs, recent statistics from the National Alliance of Caregiving and AARP found that “Eighty-one percent of family caregivers of children with special health care needs do not use respite.” Likewise, although they say they desire more time and “life balance,” 86 percent of family caregivers for young adults ages 18-49 “have not used a respite or companion service to free up their time.”
The reasons for this vary. Some include:
- Concerns that no one else will be able to provide the same level of care for their child that they can
- The belief that they “should” be able to manage on their own
- Guilt about their desire for a break and for feelings of sadness, anger or frustration about their child’s significant needs
- Lack of awareness of the toll caregiving is having on the caregiver and the family
- Lack of awareness about respite resources
According to KidsHealth From Nemours, respite care comes in a variety of types including:
- Home-based care provided by a skilled caregiver for a few hours a day, weekly or as often as needed
- Drop-off day programs often based at schools, healthcare facilities and faith-based programs
- Respite programs sponsored by community-based agencies, residential facilities and camps
- Parent co-ops when families of children with special needs take turns watching each other’s children
Though respite care can be expensive, programs that help with funding do exist if parents know where to find them, are willing to do the leg-work and have the patience to negotiate the process.
“Most children with special needs qualify for home and community-based Medicaid waivers that can cover the cost of respite care. Many programs have waiting lists for the waivers, so it’s important to apply early,” advises Nemours.
Additionally says Nemours, “A few states get funds through Title 5 block grants, which is money from a federal program that’s designed to help children and families with special needs.” Military families’ child care benefits may include financial support for respite care, says Nemours.
Once parents access respite care, the benefits to the family are huge. According to United Cerebral Palsy, respite care provides families of children with special needs much needed relaxation; enjoyment; stability in the form of improved coping skills and ability to manage crises; preservation and strengthening of the family and parental unit; community involvement that prevents feelings of isolation, and time to pursue personal enrichment
Here are some resources to help you find options for various types of respite care:
Local UCP affiliates
The ARCH National Respite Network
Family to Family Health Information Center
(For military families) Child Care Aware of America or TRICARE, which provides health benefits for active-duty service members
Happy Mother’s Day to all!