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:
(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!
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