Magazine article The Exceptional Parent

Finding Respite Care

Magazine article The Exceptional Parent

Finding Respite Care

Article excerpt

Q

I am a single parent with a 13-year-old son who has cerebral palsy and epilepsy. Unfortunately, with no close family here, I am his sole caregiver. My son can be difficult to feed and has seizures about three times a week.

Fortunately, I have a wonderful neighbor who watches my son on school holidays and when I am late returning from work. When he is too ill, I stay home to take care of him.

I feel uncomfortable relying on the generosity of my neighbor but I have not been able to find any other affordable, reliable caretakers for my son. I want to take night courses at a local community college to prepare for a career in physical therapy. I would also like to be able to go out with friends. I feel guilty, but I really need some "R and R" and answers about respite care. How do I go about finding and qualifying for respite services? How much am I entitled to? What kind of care can I expect? What kind of questions should I ask? How can I prepare my son for new caretakers?

A

It is not unusual for parents to tell me they feel guilty or are reluctant to ask for or use respite services. I ask them to take a self test (see page X) developed in 1989 by Carol Valdivieso for the NICHY News (National Information Center for Children and Youth with Disabilities). If they answer yes to any of these questions, I suggest they can benefit from respite care.

Your need for free time is perfectly reasonable and your desire for advanced education is admirable. You should not feel guilty. Using respite services will give you more energy for parenting by allowing you to take care of your personal needs and aspirations.

Respite care is short term care provided to individuals with disabilities to give families a break from the daily routine of caregiving. It is not typical child care because the person being cared for has special needs that may be complex. Respite care may also involve overnight care for an extended period of time.

Respite care, always very important in caring for individuals like your son, is becoming even more so as a growing number of children with complex disabilities are being cared for at home. Society expects the parents to provide all the care, often without adequate support. Parents, on the other hand, need "R and R" (rest and relaxation).

The availability of respite-care services varies from state to state.

In Arizona, where I practice, case managers from the Department of Developmental Disabilities are responsible for assigning respitecare hours, usually through organizations who provide trained personnel. Eligibility for services is determined on the needs of each case. Respite-care services may be provided for as little as a few hours to over 60 hours per month. In other states the availability is significantly restricted. The organizations listed below should be able to help identify what is available in your state.

ARCH (Access to Respite Care and Help) (800) 773-5433 (phone) E-mail:HN4735@connectinc.com

Parent Training and Information (703) 684-6763 (phone)

The Arc (National Headquarters) (817) 261-6003 (phone) (817) 277-0553 (TDD) E-mail: thearc@metronet.com

Respite care may also be available from state and local organizations such as churches and schools. Charges, if any, would depend on the type of service and who is providing it. …

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