UD report finds critical need for respite care

4:35 p.m., Nov. 20, 2003--There is a critical need for respite care for Delaware families living with a child or adult with severe disabilities, according to a University of Delaware Center for Disabilities Studies task force study released Nov. 20.

Task force coordinator Timothy F. Brooks

UD’s Respite Care Task Force found many Delaware caregivers face health and emotional problems of their own as a result of the stress involved in full-time care giving. It also found that access to cost-effective respite care is extremely limited in Delaware and around the nation.

“It is difficult everywhere. Even in states that have given significant support to respite care in the past, it is still an area in which the need grows exponentially,’’ according to task force coordinator Timothy F. Brooks, a retired University administrator whose adopted son, Ross, has severe developmental disabilities.

The task force report said the benefits of respite care are obvious. Supporting families who provide care at home is cost-efficient and humane, and families receiving respite care are less likely to admit a family member to a residential placement at public expense. Respite care also reduces the risk of abuse or neglect of vulnerable children or adults with disabilities.

The task force spent one year examining how respite care is provided in the state, reviewing Delaware’s current policies, and collecting information on lifespan respite programs in other states—programs that provide respite care at any age, from care for an preschooler with autism to care for an person with Alzheimer’s.

Many of the task force members were caregivers like Ann Phillips of North Wilmington, whose family provides all the daily care for her 20-year-old son, Aaron, since a car accident left him paralyzed from the chest down three years ago.

Phillips said Aaron’s disability caused her to leave her job, derailed her husband’s plans for early retirement and prompted her son, Richard, to stay at home after college so he could help with Aaron’s care.

“I love Aaron dearly, and I am grateful that he is home with us. It truly is a joy to see him enjoy his life to the fullest, while working harder than anyone can imagine. The fact remains there isn’t a time in my day when I am not either doing something for him, to him or with him,’’ she said.

In the report, the members emphasized “that lifespan respite care is an essential family support. The stress on caregivers providing primary support for a person with severe disabilities is immense. Without respite care, families and caregivers suffer from extreme stress and may develop their own health-related issues.”

Task force member Ann Phillips, of North Wilmington, whose family provides all the daily care for her 20-year-old son, Aaron, since a car accident left him paralyzed from the chest down three years ago.

The task force made four critical recommendations to begin to improve the lot of caregivers and family members with disabilities.

First, the members called for a state law mandating lifespan respite care—care that would be available for persons with disabilities at any age.

There are no bills pending in the Delaware legislature regarding respite care, but the U.S. Senate unanimously passed the Lifespan Respite Act in April, and a House version is in committee. Both bills would pay for the development of respite programs at state and local levels and pay for training for respite workers, volunteers and family caregivers.

Brooks said state programs likely would be advanced if the House bill makes it out of committee and a bill is signed into law.

The task force’s second recommendation is for a survey to assess the level of unmet need for respite care.

Brooks said the limited coordination among state and private agencies makes it impossible to gauge the number of families in need. “There are no figures,’’ he said. “All you get are the families who say, ‘I’m desperate.’”

The task force also recommended a comprehensive directory of all available respite services in the state as a tool for families and case managers, and it supports a Family Support Medicaid Waiver, which could give additional federal Medicaid dollars for families to pay for respite services.

UD’s Center for Disabilities Studies, part of the College of Human Services, Education and Public Policy, supports a number of projects aimed at improving the quality, quantity and range of public and private services and supports for individuals with disabilities and their families in Delaware. For more information on the Center for Disabilities Studies, please call (302) 831-6974.

Photos by Kathy F. Atkinson

E-mail this article

To learn how to subscribe to UDaily, click here.