Barriers to using respite services

Recent research suggests that families who use respite tend to have higher levels of perceived stress, lower levels of support from others, and fewer resources. In many of these families, the individuals in need of care have more severe disabilities, problem behaviors such as aggression or self-injury, and communication difficulties; are school-aged; and are more dependent for basic needs such as eating, toileting, and dressing.

It has been well documented that many families eligible for respite care never utilize these services. Research regarding the use, availability, and effectiveness of respite care is still in the preliminary stages. Various reasons for non-utilization of respite include:

Behavior disorders—Disorders characterized by disruptive behaviors such as conduct disorder, oppositional defiant disorder, and attention-deficit/hyperactivity disorder.

Community mental health centers—Organizations that manage and deliver a comprehensive range of mental health services, education, and outreach to residents of a given community.

Deinstitutionalization—The process of moving people out of mental hospitals into treatment programs or halfway houses in local communities. With this movement, the responsibility for care shifted from large (often governmental) agencies to families and community organizations.

Developmental disabilities—Disabilities that are present from birth and delay or prevent normal development, such as mental retardation or autism.

Intermediate care facility—An inpatient facility that provides periodic nursing care.

Medicaid—A program jointly funded by state and federal governments that reimburses hospitals and physicians for the care of individuals who cannot pay for their own medical expenses. These individuals may be in low-income households or may have chronic disabilities.

Skilled nursing facility—An inpatient facility that provides 24-hour nursing services to individuals in need of extended care.

Veteran's Administration hospitals—Medical facilities operated by the federal government explicitly for veterans of the United States military.

Wraparound—A relatively new form of mental health service delivery that strives to accommodate all family members based on self-defined needs, flexibly incorporating both formal and informal community services

• Unfamiliarity: Some families are unaware that such services exist, or may be uncertain about how to access services. This implies a need for improved referral services.

• Funding: Limited funding may prevent some families from receiving services.

• Caregiver qualities: Some caregivers experience guilt or anxiety over allowing someone else to care for their loved one. Being able to maintain one's family independently may be tied to gender roles or cultural cus-

An adolescent swings on the playground at a respite care facility that provides short-term care for families who have children with developmental disabilities. (AP Photo/Fort Collins Coloradoan, Sherry Barber. Photo reproduced by permission.)

toms. Relatives and friends may assist in caregiving, making formal respite unnecessary.

• Care recipient qualities: Occasionally the individual with the disability is opposed to respite care. He or she may not trust strangers or may refuse to leave home. In other instances, the individual may have behaviors, or require physical care, that is too challenging for the respite provider.

• Program qualities: Many researchers believe that respite programs are not adequately meeting the needs of families. In some cases, times that services are offered are inconvenient. Individuals with severe disabilities who pose the most need for services are sometimes excluded.

Many caregivers obtain respite in informal ways not offered by respite services. Some researchers have suggested that respite care should be just one form of serv ice available to caregivers. Other services that may alleviate caregiver stress could include home-delivered meals, transportation assistance, recreational resources, or care skills training.

See also Case management

Resources BOOKS

Ownby, Lisa L. Partners Plus: Families and Caregivers in Partnerships: A Family-Centered Guide to Respite Care. Washington, DC: Child Development Resources, U.S. Department of Education, Office of Educational Research and Improvement, Educational Resources Information Center, 1999.

Tepper, Lynn M. and John A. Toner, eds. Respite Care: Programs, Problems, and Solutions.Philadelphia: The Charles Press, 1993.

PERIODICALS

Chan, Jeffrey B., and Jeff Sigafoos. "A Review of Child and Family Characteristics Related to the Use of Respite Care in Developmental Disability Services." Child and Youth Care Forum 29, no. 1 (2000): 27-37. Chappell, Neena L., R. Colin Reid, and Elizabeth Dow.

"Respite Reconsidered: A Typology of Meanings Based on the Caregiver's Point of View." Journal of Aging Studies 15, no. 2 (2001): 201-216.

ORGANIZATIONS

The Arc National Headquarters, P.O. Box 1047, Arlington, Texas 76004. (817) 261-6003; (817) 277-0553 TDD. [email protected]<http://www.thearc.org>. ARCH National Respite Network and Resource Center. Chapel Hill Training-Outreach Project, 800 Eastowne Drive, Suite 105, Chapel Hill, North Carolina 27514. (888) 671-2594; (919) 490-5577. <http://www.chtop.com>. National Aging Information Center. Administration on Aging, 330 Independence Avenue, SW, Room 4656, Washington, DC 20201. (202) 619-7501. <http://www.aoa.gov/naic>. National Information Center for Children and Youth with Disabilities. P.O. Box 1492, Washington, DC 20013. (800)-695-0285. <http://www.nichcy.org>.

OTHER

Senior Care Web. <http://www.seniorcareweb.com>.

Sandra L. Friedrich, M.A.

Response prevention see Exposure treatment

Restoril see Temazepam

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