Respite Services for Families of Children with Developmental Disabilities,
Chronic and Terminal Illnesses, and/or at Risk of Abuse/Neglect

Introduction

Background

Respite care programs emerged in the late 1960's as a result of the deinstitutionalization movement with the belief that the best place to care for a child with disabilities was in the child's home and the community. Respite became an essential component in the overall support services that families needed to care for their child at home.

In the 1970's another type of respite emerged in the form of crisis nurseries. These nurseries were designed to provide temporary child care for young children at risk of abuse and neglect, and to offer an array of support services to the families and caregivers of these children.

Recognizing the effectiveness of respite and crisis nursery services, in 1986, Congress passed the Temporary Child Care for Children with Disabilities and Crisis Nurseries Act (as amended). This act established federal funding for respite and crisis nursery demonstration projects. Administered through the U.S. Department of Health and Human Services, Administration for Children and Families, Administration on Children, Youth and Families, Children's Bureau, competitive grants have been awarded to states since 1988 to assist public and private agencies in developing model temporary care services across the nation.

As more and more respite services are being developed, and interest from local communities is on the rise, some confusion has arisen concerning the definitions of respite and crisis nursery services. Because the differences between these two types of temporary care are negligible, and the goals of each are family support, family preservation, and prevention, professionals and families who use the services prefer a more generic definition that reflects the philosophy behind the intent of the services.

ARCH
"Access to Respite Care and Help"

ARCH is a National Network and Resource Center designed to create a nationwide system of respite options that provide temporary relief and support to families and caregivers. In order to meet the needs of this nationwide system, ARCH provides information, training, technical assistance, evaluation, and research activities to service providers, families, and states in developing and maintaining respite services. This work affords ARCH an opportunity to view a range of respite models and programs which subsequently brings knowledge of quality of respite services. With the large numbers of new programs springing up across the nation, ARCH believes it is important to establish some guiding principles for respite programs to follow.

The National Guidelines

Because of ARCH's commitment to strengthening and preserving family stability by developing flexible, affordable respite options that address individual family choice and need, these National Guidelines have been prepared to assist service providers in developing quality services, and to help families have some means of discerning the quality of their options.

The guidelines support the philosophy that all families can benefit from temporary intervals of rest and relief from caregiving responsibilities and that respite should be available to all families who need it. The guidelines are intended to reflect a family centered philosophy that recognizes and draws upon family strengths.

The guidelines are not attempting to set standards or requirements, but merely to establish some guidelines to assist states and local communities in developing quality respite services that meet the diverse needs of families. Programs must consult with state, county, and/or local licensing agencies to make sure they are in compliance, with licensing or certification rules that apply to the type and location of the services.

Respite can be provided in a variety of settings and these guidelines are intended to cover general principles that apply to all of them. Respite may be offered in the child's home, a provider's home, a child care center, family day care home, group home, or foster home, via community recreation programs or summer camps, in hospitals, shelters, residential facilities, or facilities designed specifically for the provision of respite care.

I. Family Involvement

Note:   Within this document, "family" has been used to designate the child's parent or primary caregiver. This could include biological, adoptive, foster, and extended families.

1.1       Respite programs should involve families in service design and implementation.

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