Planned and Crisis
Respite for Families with Children:
Results of a
Collaborative Study
Susan Dougherty
with Elisabeth Yu
Maggie Edgar
Pamela Day
and Casandra Wade
Copyright
page
This
monograph was prepared by the Child Welfare League of America and the ARCH
National Respite Network and
Contents
Executive Summary
Introduction
Project Description
Background
Respite for Families
with Children
Practice and Policy Issues in Respite Care for
Families
Barriers for Families
Lack of Trust
Shortage of Providers
Location of Service
Delivery
Barriers
Specific to Resource Families
Funding and Policy
Issues
Recommendations
References
Executive Summary
The Child Welfare
League of America (CWLA), the ARCH National Respite Network and Resource Center
(ARCH), and Casey Family Programs (CFP)
The
first step in developing best practice standards is to gather information on
the kinds of planned and crisis respite services available, how these services
are provided, and the availability of these services in comparison to the need.
CWLA and ARCH surveyed their respective members about planned and crisis
respite care services.
CWLA
members are primarily public and private nonprofit agencies that provide child
welfare services. ARCH agencies provide mainly respite care.
·
Compared with ARCH agencies, the 74 CWLA
agencies responding to the survey reported serving a higher percentage of
resource families and clients with a history or risk of abuse and neglect.
·
Conversely, ARCH agencies responding to
the survey reported serving more birth families and clients with developmental
disabilities, mental retardation, or autism.
·
Service providers in CWLA agencies were
more often foster parents or paid staff members, while providers in ARCH
agencies were more often paid staff members or private contractors.
·
Recruitment of providers and compensation
to providers reflected the different types of service providers used by CWLA
and ARCH agencies.
·
Funding sources of CWLA and ARCH agencies
also varied, with ARCH agencies receiving half of their funding from user fees
and the
Although
the differences between CWLA and ARCH agencies highlight the variety of
programs providing respite services around the country, there are also striking
similarities.
·
The majority of programs in both agencies
provide planned respite care rather than crisis respite.
·
Most families receiving services were in
the low to lower-middle income range.
·
The vast majority of families sought
respite services voluntarily.
·
More than half of the programs served
families speaking a primary language other than English; yet few programs
translated materials into other languages.
·
Respite was generally available 24 hours
a day, across all jurisdictions, and in large service areas.
·
Respite was provided in numerous
settings, but the most common locations for providing respite were the family’s
home and the respite provider’s home.
·
Fewer families and children received
crisis respite than planned respite, yet there was a clear need for both
planned and crisis respite services.
·
The costs for CWLA and ARCH agencies to
provide planned respite were similar, about $10 per hour, which is less costly
in both financial and social terms than placing children in out-of-home care.
The national average (non-specialized) foster care maintenance payment was
$4,832 per year in 1998 (Child Welfare League of America, 1999) while ARCH
estimates that providing 12 hours of respite each month costs $1,422.88 per
year.
The surveys provide new information about the
nature and availability of planned and crisis respite nationally. The survey
results not only reflect the similarities and differences in CWLA’s and ARCH’s
members, but reveal common themes across providers and programs—all focused on
meeting the needs of families in their communities.
To obtain an in-depth look at how planned and
crisis respite services are delivered around the country, four states or
communities were interviewed. These sites use different approaches to meet the
respite needs of families in their state or community.
Sites ranged from a single community
respite network to a statewide respite coalition. Respite networks or
coalitions varied in their focus—from addressing specific respite issues to
supporting a respite voucher system to serving as a respite resource for the
state. Each site attempted to tackle funding challenges in ways that fit its
needs, by blending funding, contracting with the state public agency, or
seeking funding from public funds or from funds designated to serve special
populations.
Common elements were identified among the four
sites. Whether formally or informally, each site organized a respite network or
coalition to better meet the respite needs of families. All sites mentioned
funding as a challenge—either maintaining current funding, seeking new funding,
or developing fiscal strategies to share funding between various sources. No
matter how each community or state organized the delivery of respite services,
its focus was on meeting the respite needs of families.
Although the type of families served
varies by site, in general, adoptive, kinship, and birth families could access
respite services. One site did not serve foster families. Foster families in
the other three sites could access services only if respite providers were
licensed foster parents. Two sites did not provide respite as an adoption
subsidy item. One site did not provide respite for children whose birth
families were receiving protective services.
A review of the
literature and results from the surveys, focus groups, and site studies
revealed numerous program and practice issues that may create challenges for
families in need of planned and crisis respite services. Families may fail to
take advantage of respite because they do not trust respite agencies or
providers. Other families may want to use respite but find there is a shortage
of respite providers or the type of respite service offered does not match
their needs.
Resource families, which include foster
families, adoptive families, and kinship caregivers, face some of the same
barriers. Because of their involvement with the child welfare system, they may
be even more restricted in their ability to access needed respite services.
Regulations may limit the number of children in a respite provider’s home. The
pool of respite providers may be further depleted as providers become licensed
foster parents. Cost plays a role, as foster care maintenance rates are not
adequate to pay for respite. Resource families may also distrust agencies and
providers, or fear being judged by them.
Funding for respite can come from various
sources, depending on the particular need or population of the consumers.
Funding sources used to provide respite services to families include the
Community Based Family Resource and Support Program, Promoting Safe and Stable
Families (Title IV-B, Subpart 2), Adoption Assistance, foster care programs,
and the National Family Caregiver Support Program. Funding is aimed at
strengthening families, reducing child abuse and neglect, facilitating adoption
of children with special needs, and providing respite for foster families,
relatives raising children, and family caregivers of older individuals. Each
funding source has its own requirements and the availability of funds varies
between and within states.
This inquiry into the
current state of such programs reveals that, while the overall goal of family
support is being addressed for some families, available services are
insufficient to meet the needs of families. The following recommendations are
offered as next steps in building a responsive and workable system of respite
care.
·
Address the concerns that families have
regarding agencies and providers, such as lack of trust, fear of being judged,
and other emotional barriers.
·
Develop and promulgate best practice
standards of respite and crisis care services, such as providing clear
definitions of respite and crisis care, encouraging family involvement in the
service plan, and ensuring safety of care.
·
Conduct research on existing respite
programs that can inform cost-benefit analyses for using respite to prevent
child abuse and neglect, retain foster and kinship care homes, support the
adoption of children with special needs, and prevent adoption dissolution.
·
Educate families, child welfare workers,
public and private agencies, the general public, and legislators about the benefits
of respite for resource families and as a component in the prevention of child
abuse and neglect.
· Support state and national efforts to legislate the creation and maintenance of lifespan respite networks. “Lifespan respite is a coordinated system of accessible, community-bases respite care services for caregivers and individuals regardless of age, race, ethnicity, special need, or situation.” (Kagan, 2001, p. 1)
This inquiry has confirmed the need for a
comprehensive approach to planned and crisis respite care, including a national
and state legislative strategy, additional research, a broad effort to educate
child welfare professionals and the public about the value of respite for
families, program and funding models, clear guidelines for practice, and
practice tools. Such an effort will benefit families in the most tangible way:
providing relief, support, and the respite resources needed to successfully
care for children.
Introduction
Project
Description
In 2001, the Child Welfare League of America
(CWLA) and the ARCH National Respite Network and Resource Center (ARCH)
launched an initiative to jointly
develop Standards of Respite and Crisis Care for children and their families.
CWLA and ARCH approached the Casey Family Programs (CFP)
CWLA, ARCH, and CFP collaborated to lay the groundwork for developing
standards for respite and crisis care services. This work involved
·
surveying public and voluntary child
welfare agencies and respite care providers about providing respite and crisis
care to birth, foster, kinship, and adoptive families;
·
holding focus groups with key
stakeholders on available respite services, unmet needs, and wishes for the
future;
·
identifying and studying three to four
jurisdictions that have developed promising approaches in delivering respite
and crisis care to families; and
·
producing a report that describes the survey
findings; documents promising approaches to funding, administering, and
delivering respite and crisis care services to families, as described in the
case studies; and makes preliminary recommendations regarding the expansion and
enhancement of these services to support families and caregivers nationwide.
Information for this report is derived from mail and e-mail surveys of ARCH and
CWLA members, as described in Section III, from case studies of four
jurisdictions as described in Section IV, and from focus groups on respite care conducted by both organizations. ARCH
led a focus group at its National Respite and Crisis Care Networking Conference
in
In addition to these surveys, the
Background
The deinstitutionalization movement of the late
1960s catalyzed a change in caring for people with disabilities. Children and
adults who previously might have been placed in hospitals and other care
facilities due to serious mental or physical conditions remained in their
homes. Parents and other family members became primary caregivers, often with
little or no assistance. Their loved ones needed round-the-clock care, and
caregivers had no opportunity to do anything other than provide that care.
Respite care programs emerged in response to the need for providing support to
these families and caregivers (Edgar & Uhl, 1994).
In the 1970s, as the issue of child abuse and
neglect rose in prominence, another type of respite appeared—crisis nurseries.
These were designed to prevent abuse and neglect by providing temporary child
care for young children at risk, while offering an array of support services to
the families and caregivers of these children (Edgar & Uhl, 1994).
Since then, respite programs have grown to provide services for a wide variety
of caregivers. Some groups serve specific populations of individuals with
disabilities to support their families. Other agencies providing respite
respond to the needs of multiple populations, and have either expanded their
services or sought to coordinate with other groups to serve clients. The
National Respite Coalition, formed in 1994, is working toward a vision of lifespan
respite, defined as
a coordinated system of accessible, community-based respite
care services for caregivers and individuals regardless of age, race,
ethnicity, special need or situation…Special needs may include any disability,
any chronic or terminal physical, emotional, cognitive or mental health
condition requiring ongoing care and supervision, including Alzheimer’s disease
and related disorders, developmental disabilities, children with special
medical needs, and any other condition determined by the state. Crisis respite
may also be used to provide a temporary safe haven for the care recipient in
the event of an emergency brought on by domestic violence, substance abuse, or
a housing, health, or job crisis (Kagan, 2001, p. 1).
Respite services can improve family functioning,
improve satisfaction with life, enhance the capacity to cope with stress, and
improve attitudes toward the family member with a disability (Cohen &
Warren, 1985). A recent evaluation study of families of children at risk of
abuse or neglect found a significant decrease in child maltreatment reports and
reduced stress in families using crisis respite services (Cowen, 1998).
Respite
for Families with Children
ARCH differentiates respite/crisis care from
child care or day care by describing respite as “temporary—it is child care
offered for designated periods of time to allow a caregiver to tend to other
family members, alleviate a work, job, health, or housing crisis; or to take a
break from the stress of caring for a seriously ill child” (National Respite
Coalition, 1998, p. 1). ARCH also includes families of children with
disabilities and other health care needs, and families under stress and at high
risk of abuse or neglect as populations needing respite services.
Families with children
may be nuclear, birth families with one or both parents plus the children,
families in which one of the parents is a stepparent, and blended families.
They may also be one of several types of families who provide care for children
when their birthparents cannot or will not. These include foster families,
adoptive families, and kinship caregivers (who may care for the relative
children in either formal or informal arrangements). In this report, the term “resource
families” is used to refer to all of these families, and to distinguish them
from birth families. The term “families,” without any modifier, includes both
birth and resource families.
Why do families need
planned and crisis respite services?
·
All families need support and assistance
from time to time. Some families may be particularly at risk due to financial,
housing, and social stressors; substance abuse; mental illness; poor parenting
skills; and domestic violence. Crisis respite provides a safe haven for
children in families experiencing such challenges (Edwards-Sutton, 1995;
Hardin, 1994).
·
Without adequate family supports,
children with disabilities are three to four times more likely to be victims of
neglect, physical abuse, emotional abuse, or sexual abuse than children without
disabilities (Sullivan & Knutson, 2000). Several studies cited by Kagan
(2000) point to the value of respite as a service that reduces the risk of
abuse and neglect, helps families avoid child protective services involvement
and out-of-home placements, and improves family relationships.
·
A high percentage of the 581,000 children
in foster care have behavioral or emotional disorders, developmental
disabilities, learning disabilities, chronic and acute health problems, and
other disabilities (Barbell & Freundlich, 2001).
·
More than 125,000 children with special
needs are waiting to be adopted in the United States (U.S. Department of Health
and Human Services, 2001b), and more than 167,000 children with public child
welfare agency involvement were adopted in fiscal years 1995–1999 (U.S.
Department of Health and Human Services, 2001a). Many children with special
needs have physical, health, emotional, or behavioral problems; 88% of families
adopting children from foster care receive subsidies to help meet these needs
(U.S. Department of Health and Human Services, 2001b).
·
An estimated 151,000 children in foster
care in the
·
Grandparents caring for grandchildren are
more likely to be living in poverty than those who are not. About one-third report
their health status to be fair or poor (Kagan, 2000).
A variety of organizations in the fields of
advocacy, medicine, and government support the need to provide respite services
to families.
·
Respite is an important component in the
prevention of child abuse and neglect for all families. The Community-Based
Family Resource and Support (CBFRS) program, established by Title II of the
Child Abuse Prevention and Treatment Act (CAPTA) Amendments of 1996, includes
respite in the list of services states are directed to develop to strengthen
families and reduce the incidence of abuse and neglect (Denniston &
Abdullah, 2001).
·
The National Child Abuse Coalition (as
cited in Kagan, 1998) states that planned and crisis respite care prevents
child abuse by
minimizing the stress of working parents;
increasing the ability of parents to cope with
the pressures of child care;
enhancing parent-child communication;
reducing family isolation;
improving family access to health and social
services; and
offering family relief from the demands of daily
child care.
·
The
·
The National Foster Parent Association
(2001) “supports the development and implementation of respite care programs,
with respite care providers being approved and reimbursed and compensated to
care for children on a short-term, temporary basis. Respite care providers
shall be support families for foster families, thus providing consistent care
for foster youth. The National Foster Parent Association advocates that foster
parents will receive at least two days of planned respite care per month for
each child placed in their home.”
·
ARCH’s position is that respite for
foster parents is a preventive measure that “enhances the quality of care for
the child, gives foster parents a deserved and necessary break, and ensures
healthy and stable placements for all children.”
·
The Public Policy Agenda of Generations
United (2001) supports expanding and improving mental health and respite care
services for grandparents and other relative caregivers (Barney, Levin, &
Smith, 1994, p.3).
·
The Children’s Defense Fund (2000)
suggests that kinship caregivers can benefit from respite care programs that
give caregivers, especially older grandparents, much needed rest from
caregiving responsibilities.
·
The Child Welfare League of America takes
the position that agencies “should arrange for all foster parents to have
access to respite care as needed” (1995, p. 104).
·
Twenty-three states and the
·
Twenty-three states have statewide
policies on providing respite care to foster families (Darer, 2001).
Despite this widespread support for the
provision of respite services for families, families have limited opportunities
to receive respite. This monograph describes the respite and crisis services
available to birth, foster, kinship, and adoptive families; how these services
are being provided; and the availability of services in comparison to the need
for them.
Two Surveys on Respite Care Services
In the later half of 2001, CWLA and ARCH
surveyed their members to gather information about respite services they
provide. Both CWLA and ARCH are membership organizations, but with different
member bases. CWLA members are public and private nonprofit agencies providing
a wide range of child welfare services, of which respite is only one. In
contrast, ARCH members provide respite care and may also offer other services.
CWLA first e-mailed
its member agencies to ascertain whether they offer planned and crisis respite
services. Detailed survey forms were mailed to the member agencies that
indicated they provide respite and to the state public child welfare agencies
that had not responded to the e-mail inquiry. Of the 161 surveys that were
mailed or e-mailed to agencies, 74 agencies returned their surveys. [2]
For the purpose of the survey, the following definition of planned and crisis
respite was used:
Respite
is temporary relief provided to primary caregivers in order to reduce stress,
support family stability, prevent abuse and neglect, and minimize the need for
out-of-home placement.
·
Respite is provided to children with
disabilities and other special needs, to children who have a chronic or
terminal illness, and to those children at risk of abuse and neglect.
·
Families receiving respite can include
intact families, foster and adoptive families, kinship families, and other
caregivers.
·
Respite can be offered both in-home or in
settings outside the home.
·
As a service to foster families, respite
can help to reduce disrupted placements. (CWLA, 2001, p. 1)
·
Planned respite services are and
scheduled.
·
Crisis respite services are provided on
an emergency basis.
The majority (59.7%) of programs responding to
the CWLA survey stated that they offered both planned and crisis respite
services by the definition provided; another 32.5% indicated that they offered
only planned respite, and 5.2% offered only crisis respite.
ARCH has conducted a survey of planned and
crisis respite programs annually since 1992. Its 2001 survey was sent to the
186 members of the ARCH National Respite Network. Fifty-five surveys were
returned, representing respite programs in 29 states and
Agencies responding to
these two surveys differed significantly, reflecting the difference in
membership between CWLA and ARCH. Compared with ARCH respondents, a higher
percentage of CWLA respondents were public child, family, or adult service
agencies (36% versus 4%) and family resource or support centers (13% versus
4%). Half of the ARCH agencies were private child, family, or adult service
agencies (see Table 1).
TABLE 1.
Type of organization that administers the
planned respite or crisis care services program
Administering
Organization
|
CWLA Agencies |
ARCH Agencies |
|
Private child/family/adult service agency |
40% |
50% |
|
Public child/family/adult service agency |
36% |
4% |
|
Family resource/support center |
13% |
4% |
|
Child or adult day care center |