Providing rest for families of children with disabilities

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Child at Step Up for Down Syndrome

Rich Johnson via Flickr

A child at the Down Syndrome Association of Central Florida's Step Up for Down Syndrome

All parents need a break. But parents who are full-time caregivers for their children rarely get a rest. In a twisted irony, giving everything all the time means can lower the quality of care for their children. But one faith-based group is focused on one goal: giving parents of children with intellectual disabilities short-term breaks to rest and rejuvenate.

Respite programs that give caregivers a short-term break are cost-effective way to improve the health of children. Respite lowers stress for both the parents and the children. This lower stress does more than make for happier families — it improves the overall health and care of the children.

The demand for respite care is far greater than the care that can be provided. Nationally, there are 65 million family caregivers, but only one-in-ten caregivers receive any respite care. A survey of parents of children with developmental disabilities found a lack of available respite programs for all kinds of parents, regardless of income or the extent of disability.

Even when respite is more accessible, caregivers are often reluctant to take advantage of respite out of concern for their family members. Caregivers are reluctant to turn over responsibility to others; they worry about the level of care that their family member will receive during the respite. They often feel guilty about taking time for themselves. They even feel compassion for others who they believe need the rest more than they do.

Jill’s House is a faith-based organization that is working to meet the respite needs of families of children with intellectual disabilities.  Jill’s House was founded four years ago as an extension of the D.C. area McLean Bible Church. Since 2010, Jill’s House has provided over 300,000 hours of respite care. Jill’s House is expanding nationally, with facilities in Lake Arrowhead, California, Colorado Springs and Austin, Texas.

The goal of Jill’s House is to build what they call a “rhythm of respite.” Caregivers are encouraged to return on a regular basis so that taking time out becomes a regular part of caring for their children.

Jill’s House is itself modeled after Shalva, a facility in Jerusalem, Israel. Like Shalva, Jill’s House gives top-quality care in a state of the art facility that assuages the concerns of parents. Caregivers can rest, knowing that their children are receiving expert care.

There is a need for other faith-based groups and government agencies to to expand respite care accessibility. Jill’s House is just one facility.  Moreover, while it serves families of all faiths, it does so in an explicitly Christian way. According to Jill’s House, it is very rare for families not to engage with the group because of its religion.

There are many federal and state programs fund respite; yet, it remains an underserved segment of the healthcare system. Respite programs save money by keeping parents and other caregivers from burning out, keeping children at home and out of full-time health facilities.