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National
Respite Guidelines (Page 1)
Respite
Services for Families of Children with Developmental Disabilities,
Chronic and Terminal Illnesses, and/or at Risk of Abuse/Neglect
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Respite,
temporary relief for families and caregivers, is a service
in which care is provided to children with disabilities,
with chronic or terminal illnesses, and/or to children
at risk of abuse and neglect. Respite can occur in the
child's home or in a variety of out-of-home settings,
and can occur for any length of time depending on the
needs of the family and available resources. As a vital
part of the continuum of services for families, respite
reduces family stress and thereby helps preserve the
family unit, supports family stability, and prevents
lengthy and costly out-of-home placements and possible
abuse and neglect situations.
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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.
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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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1.1.1
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Programs
should solicit family input regarding service delivery
on an ongoing basis (e.g., needs assessments, service
satisfaction surveys, advisory boards). |
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1.1.2
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Programs
and families should work together to clearly define family
roles and responsibilities within the services being provided. |
| 1.2
Respite services should be developed so that they are
family-centered. |
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1.2.1.
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Programs
should build on the strengths and resources of families. |
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1.2.2.
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Programs
should assist families in identifying their particular
need(s) for services. |
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1.2.3.
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Families
should receive appropriate emotional support and reassurance
about having their child in care. |
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1.2.4.
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Family
preferences for service entry, location, hours, activities
and delivery, should be respected and accommodated to
the greatest extent possible. |
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1.2.5.
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Families
should have access to their children while they are in
care. |
| 1.3
Each family's unique characteristics should be respected
in the provision of respite services. |
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1.3.1
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Each
family's cultural heritage should be acknowledged and
respected. Every effort should be made to incorporate
the family's cultural needs into the respite services. |
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1.3.2
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Diversity
in family composition should be acknowledged and supported
in the provision of respite services. |
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1.3.3
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Each
family's spiritual beliefs should be acknowledged and
respected. |
| 1.4
Family privacy and confidentiality should be respected
at all times by program staff and volunteers. |
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1.4.1
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Programs
should only request information that is necessary for
the provision and evaluation of services. |
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1.4.2
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All
written records and oral interactions (for example, phone
conversations, meetings) should be kept confidential. |
| 1.5
If specific ancillary services are not available to families
within the respite program, families should be referred
to other community agencies that can meet their services
needs. |
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1.5.1
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Programs
should identify and maintain current information on other
community services that families may find helpful. |
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1.5.2
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Programs
should facilitate referral to other services, when requested. |
Next
Section, Care Needs of the Child
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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.
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