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 |
6% |
2% |
|
Mental health agency |
6% |
11% |
|
Hospital/medical institution |
3% |
4% |
|
Religious institution |
3% |
4% |
|
Long term care agency |
1% |
2% |
|
Other (primarily schools and agencies for
person with developmental disabilities) |
9% |
20% |
The differences in
responding agencies were reflected in different responses about the consumers
of respite services.
·
On average, 59.5% of families receiving
respite from programs offered by CWLA member agencies in 2000 were headed by
resource families (46% by foster parents; 9% by adoptive parents; 3% by
grandparents; and 1.5% by other kin). This stands in marked contrast to the
ARCH survey, in which only 15% of families served were identified as headed by
resource families.
·
Birthparents headed 34% of households
receiving respite services from CWLA agencies and 73% of ARCH agencies.
·
Families of all types with children (as
opposed to families caring for adults who need respite) were the majority of
consumers of respite services in both surveys.
·
Although both groups served children with
a range of disabilities, CWLA member agencies had a considerably higher
percentage of clients with a history or risk of abuse or neglect. The largest
percentage of clients in the ARCH sample had developmental disabilities, mental
retardation, and autism (see Table 2).
|
Population Served |
CWLA Agencies |
ARCH Agencies |
|
History of abuse/neglect |
83% |
55% |
|
Risk of abuse/neglect |
75% |
61% |
|
73% |
72% |
|
|
Developmental disabilities |
71% |
93% |
|
Mental illness |
64% |
64% |
|
Physical disabilities |
57% |
78% |
|
Mental retardation |
53% |
91% |
|
Speech/language disabilities |
51% |
78% |
|
Hearing impairments |
44% |
67% |
|
Visual impairments |
43% |
63% |
|
Autism |
39% |
94% |
|
Medically fragile conditions |
37% |
51% |
|
Chronic/terminal illness |
36% |
48% |
|
HIV/AIDS |
36% |
31% |
|
Substance abuse |
34% |
24% |
|
Other |
19% |
23% |
|
Adults with dementia |
N/A |
15% |
·
The most common conditions that made
clients eligible for respite services from CWLA member agencies were risk of
abuse or neglect (reported by 14% of responding agencies) and mental illness
(13%), followed by developmental disabilities and history of abuse or neglect
(both 9%). The low percentage of CWLA agencies identifying conditions for
service eligibility may be because all children, regardless of condition, are
eligible for their respite services.
·
For ARCH member agencies, almost half
(44%) listed developmental disabilities as a qualifying condition; one-third
listed mental retardation, and more than one-quarter listed autism (see Table
3).
Qualifying
Condition
|
CWLA Agencies |
ARCH Agencies |
|
Risk of abuse/neglect |
14% |
17% |
|
Mental illness |
13% |
23% |
|
Developmental disabilities |
9% |
44% |
|
History of abuse/neglect |
9% |
13% |
|
Mental retardation |
6% |
33% |
|
Autism |
5% |
28% |
|
Physical disabilities |
5% |
22% |
|
Attention deficit disorder |
5% |
19% |
|
Speech/language disabilities |
5% |
15% |
|
Medically fragile conditions |
5% |
15% |
|
Hearing impairments |
4% |
22% |
|
Visual impairments |
4% |
19% |
|
Chronic/terminal illness |
4% |
17% |
|
HIV/AIDS |
4% |
7% |
|
Other |
4% |
N/A |
|
Substance abuse |
3% |
2% |
|
Adults with dementia |
N/A |
6% |
·
CWLA agencies served a slightly higher
percentage of low-income families, although only two (2.6%) reported an income
eligibility requirement. The majority of families using respite services from
either CWLA or ARCH agencies fell below the $35,000 income level. The ARCH
survey report concluded that programs do not serve families from higher income
levels because “it is likely that families in higher income categories are able
to hire private nurses or other providers without going through respite
agencies, as well as having strong personal networks and support systems to
assist with respite needs” (ARCH National Respite Network and Resource Center,
2001, p. 8).
·
The majority of CWLA and ARCH agencies
served children and youth up to age 19. Respite services from CWLA agencies are
more readily available for children in the middle age ranges (4–12 years old) than for infants and
teenagers. Only one-quarter of the respondents reported providing respite for
young adults, who presumably have a disability or illness, although this was
not specifically stated. A higher percentage of ARCH members served infants
(87% versus 73%) and more than twice as many served young adults (56% versus
22%). Teenagers, however, were served at approximately the same rate. Almost
one-half of ARCH respondents provide respite to adults and seniors, as well.
·
Both surveys found that more than half of
the responding agencies provided services to families who do not speak English,
with Spanish being the most frequently spoken language. Only 25% of ARCH
members and 11% of CWLA members, however, had program materials available in
language other than English.
·
Only 3% of families served by ARCH
agencies and 7% of families served by CWLA agencies are mandated to receive
services to prevent abuse or neglect.
·
Respondents to both surveys indicated
that many families were referred by social service agencies (CWLA 46%; ARCH 42%)
and, to a much lesser extent by medical professionals (CWLA 6%; ARCH 12%). Of
families not referred for services, programs reported using a variety of
methods to reach families:
¨ word
of mouth;
¨
schools and early intervention programs;
¨
posters;
¨
public service announcements;
¨
newspaper advertisements; and
¨
other methods, such as community
presentations or foster care program services (see Table 4).
How
Families Learn About Service
|
CWLA Agencies |
ARCH Agencies - method used |
ARCH Agencies - families reached |
|
Word of mouth |
56% |
74% |
22% |
|
Other methods such as community presentations,
foster care program services |
49% |
N/A |
N/A |
|
Schools/early intervention programs |
34% |
57% |
14% |
|
Posters |
17% |
20% |
1% |
|
Public service announcements |
17% |
20% |
1% |
|
Newspaper advertisements |
9% |
20% |
2% |
·
ARCH members, however, also indicated
that they believed much lower percentages of their families actually learned
about their services from some of these methods.
·
Professional referrals and word of mouth,
plus presentations directed specifically toward families, appear to be the most effective means of informing families about
respite services.
Respite Program
Description
·
The sites at which services were offered
were markedly different. Almost three-quarters of CWLA member agencies offered
respite in the home of the provider, and 42% brought respite providers into the
family’s home. These percentages were almost reversed among ARCH member
agencies. In both groups, many agencies offered services in more than one
setting (see Table 5).
TABLE 5.
Where respite
and crisis services take place
Location
of respite/crisis services
|
CWLA Agencies |
ARCH Agencies |
|
Provider’s home |
73% |
43% |
|
Family’s home |
42% |
68% |
|
Residential facility |
30% |
24% |
|
Day care center |
22% |
21% |
|
Camp |
17% |
25% |
|
Family resource/support center |
14% |
12% |
|
Therapeutic child development center |
8% |
12% |
|
Recreational facility |
8% |
19% |
|
School |
6% |
12% |
|
Hospital |
4% |
13% |
|
Church |
3% |
6% |
|
Other |
22% |
34%[3] |
·
CWLA and ARCH respite programs served
geographical areas ranging from city, county, multicounty, state, and
multistate. CWLA programs tended to serve larger geographical areas than ARCH
programs. The majority of CWLA programs served a multicounty or state area
while the majority of ARCH programs served a county or multicounty area.
·
Respite services were available across
urban, suburban, and rural jurisdictions, with more CWLA agencies serving urban
populations (83% versus 65%). Service availability to suburban and rural
jurisdictions was about the same (suburban: 73% CWLA versus 70% ARCH; rural:
71% CWLA versus 70% ARCH).
· The
vast majority of agencies responding to both surveys indicated that they
offered 24-hour care. This clearly differentiates them from child care services
offered to families seeking regular temporary care during daytime hours and
usually only during weekdays.
Direct Service
Providers
·
The two surveys describe different
populations of individual direct service providers. More ARCH agencies employed
paid staff members (64% versus 34%) or private contractors (34% versus 16%) who
provide respite; whereas more CWLA agencies had foster parents that provide
respite services (46% versus 5%). ARCH had slightly more volunteers who were
not foster parents (6% versus 5%). Again, this reflects each organization’s
membership.
·
Reflecting the different population of
service providers, compensation to non salaried staff varied between CWLA and
ARCH agencies. Nonsalaried service providers in CWLA agencies received payment
by billing the agency or through “other” methods, such as foster care payments.
Nonsalaried service providers in ARCH agencies billed the agency or received
direct payment from families (see Table 6).
How nonsalaried staff are compensated
Compensation to
nonsalaried staff[4]
|
CWLA Agencies |
ARCH Agencies |
|
Bill the agency |
61% |
44% |
|
Direct payment from families |
21% |
23% |
|
Vouchers |
6% |
19% |
|
Other (such as foster care payments) |
23% |
6% |
·
Service providers were identified and
recruited using the following methods:
¨ materials
and presentations at colleges;
¨
materials and presentations at health
care facilities;
¨
materials and presentations at schools;
¨
materials and presentations at social
service agencies;
¨
newspaper want ads;
¨
posters in the community;
¨
public service announcements; and
¨
other recruitment methods aimed at groups
(such as churches, community groups, and foster parents).
A
higher percentage of ARCH agencies used newspaper ads and presentations at
colleges and schools to recruit service providers. In contrast, a higher
percentage of CWLA agencies used presentations at social service agencies,
newspaper want ads, and other methods, such as obtaining referrals from foster
parents and recruiting providers from the pool of current foster parents (see
Table 7).
|
Recruitment of Service Providers |
CWLA Agencies |
ARCH Agencies |
|
Other methods such as efforts aimed at
churches, community groups, foster parents |
57% |
38% |
|
Newspaper want ads |
54% |
77% |
|
Social service agencies |
49% |
38% |
|
Colleges |
39% |
75% |
|
Schools |
33% |
60% |
|
Posters |
30% |
38% |
|
Health care facilities |
27% |
27% |
|
Public service announcements |
26% |
27% |
Differences
in recruitment may be because a larger percentage of the ARCH providers were
paid staff who are prepared to offer a level of medical care that is not
necessary for most children served by CWLA agencies.
Fiscal
Information
·
Funding for respite services is a patchwork
of public and private money, much of it earmarked for specific populations or
services. Answers to funding questions from the two survey groups indicate the
extent to which funding sources can vary. ARCH member agencies, which served a
higher percentage of individuals with disabilities, received more of their
funds from health-related sources, including
Funding
Sources
|
% of funding from this source |
|
|
CWLA
Agencies[5] |
ARCH
Agencies |
|
|
State general funds |
34.0% |
3.6% |
|
City/county general funds |
7.1% |
13.8% |
|
Private contributions, fund raiser, planned
giving |
7.4% |
7.2% |
|
Foundations |
6.3% |
6.1% |
|
United Way/other local private funding |
4.9% |
31.1% |
|
User fees |
4.3% |
20.1% |
|
Social Services Block Grant/Federal Child
Welfare Fund |
4.2% |
5.4% |
|
Medicaid Waivers |
3.8% |
1.9% |
|
Mental health funds |
3.7% |
4.2% |
|
Promoting Safe and Stable Families Act |
1.8% |
0% |
|
Community Based Family Resource and Support
(CBFRS) |
1.8% |
.9% |
|
Temporary Assistance for Needy Families (TANF) |
.7% |
.7% |
|
Child Care Development Block Grant |
.6% |
.6% |
|
Adoption Assistance/Opportunities Acts |
.5% |
<.1% |
|
Profit-making business |
.1% |
<.1% |
|
Tobacco settlement money |
0% |
<.1% |
|
Maternal and Child Health Act |
0% |
2.3% |
|
Other |
10.0% |
0% |
|
“Unknown” |
1.6% |
2.2% |
·
The reported cost for CWLA agencies to
provide respite and crisis care services, whether described in hourly or daily
rates, varied widely.
¨ The
average cost of respite care was $10.21 per hour.
¨
The average cost of crisis care was
$15.43 per hour.
·
The cost of respite and crisis care to
ARCH agencies also varied.
¨ The
average hourly rate of pay for crisis care providers is $8.71 per hour with a
median of $8.24 per hour.
¨
The average rate of pay for planned
respite providers is $8.81 per hour. Added to the average administrative cost
of $1.21 for each hour of respite provided, the total average cost of providing
respite is $10.02 per hour.
¨
Extrapolating from this hourly cost for planned
respite care, ARCH estimates that it costs $120.24 per month or $1,422.88 per
year to provide twelve hours of respite to an individual each month.
¨
When used to prevent out-of-home
placement due to child abuse or neglect, respite becomes a fiscal bargain
compared to the national average (nonspecialized) foster care maintenance
payment of $402.67 per month, or $4832.04 per year in 1998 (Child Welfare
League of America, 1999).
Services
Delivered
·
The following two tables show total
numbers served by planned and crisis respite care in 2000, as reported by
respondents. CWLA’s and ARCH’s results indicate that while a greater number of
families received planned respite than crisis care, many more hours of crisis
care were provided per family. The large discrepancy between the hours of
crisis care provided by CWLA agencies and by ARCH agencies may be because ARCH
agencies have limited slots of crisis beds, whereas CWLA agencies that are
involved with the child welfare system may have access to longer periods of
crisis care (see Table 9).
|
Planned Respite Care |
CWLA Agencies |
ARCH Agencies |
TOTAL |
|
Families served past week |
1,064 |
1,987 |
3,051 |
|
Families served past year |
3,187 |
9,242 |
12,429 |
|
Children and/or dependent adults served past
year |
7,906 |
10,305 |
18,211 |
|
Hours care provided |
859,563 |
1,291,751 |
2,151,314 |
|
Hours care provided per family[6] |
270 |
140 |
173 |
|
Crisis Care |
CWLA Agencies |
ARCH Agencies |
TOTAL |
|
Families served past week |
230 |
197 |
427 |
|
Families served past year |
2,548 |
5,110 |
7,658 |
|
Children and/or dependent adults served past
year |
3,900 |
8,221 |
12,121 |
|
Hours care provided |
2,087,354 |
298,785 |
2,386,139 |
|
Hours care provided per family |
819 |
59 |
311 |
Need for
Service
·
Forty percent of CWLA agencies and 59% of
ARCH agencies reported turning families away from planned respite care in 2000.
·
Additionally, 23% of CWLA agencies and
59% of ARCH agencies stated that they have waiting lists for planned respite
care.
·
Thirty-six percent of responding CWLA
agencies and 63% of ARCH agencies reported turning families away from crisis
care services.
·
In addition, 10% of CWLA agencies and 17%
of ARCH agencies reported they have waiting lists for crisis care services.
Summary
The first step in developing of best
practice standards was to gather information on the kinds of planned and crisis
respite services available, how these services are provided, and the
availability of respite in comparison with the need. To ascertain this
information, 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 mainly provide 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 between CWLA and ARCH agencies
also varied, with ARCH agencies receiving half of their funding from user fees
and the
While
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 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
language other than English, yet few programs translated materials to other
languages. Respite was generally available 24 hours a day, across all
jurisdictions, and in large service areas. Although respite was provided in
numerous settings, the most common locations for providing respite were the
family’s own home and the respite provider’s home. Fewer families and children
received crisis care 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 (nonspecialized) foster care maintenance payment is $4,832
per year in 1998 (Child Welfare League of America, 1999) while ARCH estimates
that providing twelve hours of respite each month costs $1,423 per year.
The surveys provide new information regarding
the nature and availability of planned and crisis respite nationally. The
survey results not only reflected the similarities and differences in CWLA’s
and ARCH’s membership, but revealed the common themes across providers and
programs—all focused on meeting the needs of families in their communities.
Site
Studies: Four Approaches
Respite services have
evolved in response to the needs of various, often unique, populations.
Beginning with specialized care for children with disabilities in the 1960’s,
respite providers gradually emerged to meet the needs of children at risk of
abuse and neglect. In the 1970’s, respite served medically fragile infants with
conditions such as prenatal drug exposure, HIV/AIDS in the 1980’s, and, in the
1990’s children with serious emotional disturbances and adults with conditions
like Alzheimer’s. The most recent group to be identified as needing respite
services is grandparents and other relatives raising kin.
As individual respite
providers began caring for an increasingly diverse group of consumers, it
became apparent that coordination and cooperation between small agencies would
enable them to better meet consumer’ needs, as well as access various funding opportunities emerging
from federal, state, and local initiatives. The development of local networks is evolving into a national movement
to create lifespan respite networks designed to provide a “coordinated system
of accessible, community-based respite care services for caregivers and
individuals regardless of age, race, ethnicity, special need, or situation” (Kagan,
2001, p.1). As the National Respite Coalition works for the passage of Federal
Lifespan Respite Legislation, individual states and communities are addressing
the need for comprehensive respite services through legislation, as well as
through less formal coalitions of agencies, service providers, and consumers.
In this section we
look at how four communities in
different parts of the country are trying to address the respite needs of
families. These programs represent a few of the many approaches being used to provide respite services
to families with children. For a
description of six states currently addressing Lifespan Respite on a statewide
basis, see the state side-by-side comparison by the National Respite Coalition
(2001).
Individuals participating in the
Respite services in
Some providers focus strictly on the provision
of planned respite for families with youth less than 18 years old who are
developmentally delayed or severely emotionally impaired. Local Community
Mental Health Boards set standards for determining qualifications for use of
such services in their areas. Other independent agencies are free to determine
their operating principles. There are two examples of such agencies.
·
The
·
The
What these and other agencies in this area have
in common is a reliance on blended funding from a variety of sources to
facilitate the offering of different services, often under the same roof.
Funders for just these two agencies include such diverse organizations as the
Children’s Trust Fund,
The use of creative blended funding has enabled
organizations in
However, what all agencies have in common is a
constant struggle to maintain funding and seek out new sources of support.
Because there is no consistent way of accessing funds over time, agencies must
sometimes scramble to make up for budget cuts that leave respite services,
which are not mandated, unfunded. Funder’s regulations may also be problematic;
for example, money coming from the state’s tobacco tax can only be used for
children with serious emotional disturbance. Agencies have difficulty
recruiting and retaining service providers because the rate of pay they are
able to provide is so low; participants in the site study expressed frustration
at their inability to offer higher pay due to lack of funding.
|
The |
Respite is not an adoption subsidy item in
For more information about the Michigan Respite
Coalition, contact:
Doug Cunningham, Executive Director
517/788-7533
E-mail doug49203@yahoo.com
The Oklahoma Respite Resource Network (ORRN) is
a collaboration of public and private agencies supporting families and
caregivers by increasing the availability of respite care in the state. It is
coordinated by the Oklahoma Areawide Services Information System (OASIS), a
free statewide information and referral service that uses a computerized
database to help the people locate resources for a variety of social services
and health care needs.
Started in February 1998 with a pilot project
involving 15 families in one county, ORRN served 1,200 families statewide in
fiscal year 2002 and has more than $1 million in funding from nine major
funding sources. The majority of funds come from state agencies within the OK
Department of Human Services and from Community-Based Family Resource and
Support (CBFRS) funds through the State Department of Health, with additional
grants from private foundations and state agencies and associations. ORRN has
“no officers, no budget, and no bylaws” (Oklahoma Respite Resource Network,
2001 p. 2). Funding is used to support a voucher system that allows qualifying
caregivers to manage their own respite needs.
The only qualification standard for accessing
ORRN funding is an income limitation; families earning over $60,000 per year or
those receiving particular types of waiver services or assistance payments from
the Developmental Disabilities Services Division (DDSD) or Aging Services
Division cannot participate. An exception to the income limitation is for
certain caregivers whose funding comes through Aging Services, including
grandparents raising grandchildren; there is no limitation for these families.
Application is through OASIS, which then sends
it to the appropriate funding source for a determination of eligibility for
services. Approval depends on funding availability and may take two months or
more. Each funding agency can establish its own eligibility criteria based on
income, age, disability, or geographical location. Families with the following
needs are supported:
·
adoptive parents of
a child who was formerly in the custody of the Department of Human Services
(DHS) and who needs health and behavioral supports;
·
parents of a child
participating in the DHS SSI-Disabled Children’s Program;
·
caregivers
providing care for a person with a developmental disability who is not
receiving DHS Developmental Disabilities Services Division waiver services or
the Family Support Assistance payment;
·
caregivers with a
family member age 60 or older who is not receiving Advantage waiver services;
·
caregivers with a
family member with an acquired brain injury, such as, multiple sclerosis,
stroke, dementia, shaken baby syndrome, closed-head trauma;
·
grandparents
raising a grandchild;
·
families with
children being served through a mental health center that is contracted with
the Department of Mental Health Substance Abuse Services;
·
two-parent families
with children under age 18 who have a disability;
·
caregivers caring
for a family member or domestic partner with a catastrophic illness; and
·
gap funding is
available through two grants, so that no one is left behind (Oklahoma
Respite Resource Network, 2001, p. 13).
Once approved, the
caregiver is issued vouchers for $300 or $400 per quarter (depending on
income). These vouchers are used by the caregiver to purchase respite services
in any way they choose, negotiating with any selected provider for an hourly,
daily, or weekly rate of payment. Providers must be at least 18-years-old, and
can be anyone except a spouse, parent of a minor, legal guardian, or family
member who lives in the same house as the person needing respite. After
services are provided, the voucher is completed and returned to DHS, which then
issues a check to the provider.
Participants in our
telephone site visit with
·
families are the experts in the care of
their own members and are best able to select and train providers with whom
they feel comfortable;
·
families have developed their own support
systems and respite resources over time. By providing for the funding of these
services, families do not have to turn the care of their loved ones over to
strangers;
·
families feel empowered by the process;
·
families are able to negotiate their own
payment rates, resulting in lower costs;
·
DHS is relieved of the responsibilities
of certification, licensing, training, and running background checks; and
·
there are no liability issues for DHS
because families are responsible for hiring, training, and firing providers.
In addition to administering the voucher system,
OASIS maintains a registry of respite providers, who are listed on the basis of
information they provide. Listing does not constitute a recommendation.
Families who use the registry are responsible for evaluating providers
themselves.
Adoptive families and informal kinship
caregivers are treated the same as any other families in this system, and
grandparents caring for grandchildren do not have to adhere to the general
income limitation. Foster parents, however, cannot participate in the voucher
program. State policy requires foster parents wishing to use alternate
short-term care to identify a caregiver, who must then be approved with a
background check by DHS. Even informal babysitting arrangements must be
documented, although a background check is not necessary (Oklahoma Department
of Human Services, n.d.).
For more information about the Oklahoma Respite
Resource Network, contact:
Rose Ann Percival, Program Manager
Department of Human Services
Developmental Disabilities Services Division
405/522-0600
E-mail RoseAnn.Percival@okdhs.org
Approximately 15 agencies in the
·
defining what respite is;
·
funding;
·
building a sufficient pool of providers;
·
getting everyone (agencies, providers,
and consumers) to the table;
·
sharing information, providers, or
resources;
·
meeting the needs of diverse client
populations;
·
requiring different skill requirements of
providers depending on the clients served;
·
following various regulations depending
on agency connection, funding, and legal status;
·
resolving insurance liability issues
(such as child safety, loss and damage, provider protection, and agency
protection);
·
changing community perception that
families are doing well enough on their own;
·
overcoming family reluctance to use
respite services;
·
setting standards;
·
arranging payment for services;
·
determining which agency provides what
services;
·
meeting licensing standards;
·
obtaining Department of Developmental
Disabilities certification;
·
improving provider to client ratios; and
·
providing sibling care.
Having established their identity as the
Community Respite Care Network, members are now addressing these issues in a
variety of ways.
Members of the
collaboration agreed to define respite as “planned or unplanned short term care
for special needs children/adults for the purpose of temporary relief to the
primary caretaker and/or the child/adult in need of care. Relief may be
provided in the caretaker’s home or out of their home” (S. Abagnale, personal
communication,
Surveys have been
distributed for completion by providers, to determine current services
available, and by consumers, to determine both current use of services and need
for additional services.
The National Foster
Parent Association (NFPA) presented a workshop on the development of a respite
program to network members.
Subgroups have been
assigned to do specific work around marketing, funding, recruitment, and
management, with information-gathering the first step to be undertaken by each
group.
As this group moves
forward with its planning, it hopes to learn from the experiences of respite
networks in other states by seeking out contacts and resources, such as manuals
and guidelines.
The long-term vision
of the Network is to
·
work toward common minimal standards of
care for the community;
·
pursue collaborative funding
opportunities;
·
explore ways for the agency
representatives and members to work together (including marketing, recruitment,
training, and shared families);
·
examine the feasibility of the Network
developing its own pool of respite families who can work with multiple
populations;
·
promote cooperation and coordination of
services; and
·
reduce duplication of efforts.
Foster families in
The use of respite as a child abuse preventive
measure for families involved with the child welfare system is not currently
supported by state programs. Arizona does not provide respite services to
children whose birth families are receiving protective services, which includes
“families who are unable to provide child care for a portion of a 24-hour day
due to a crisis situation of domestic violence or homelessness; a physical,
mental, emotional, or medical condition; or participation in a drug treatment
or drug rehabilitation program; or court ordered community service” (State
Plan, 2001, Appendix 2). Services to these families are considered “child care”
rather than “respite care” and are funded through the Child Care and
Development Fund (CCDF). Senate Bill
1435, introduced to the Arizona State Senate in early 2001, called for the
establishment of a program that would provide up to two weeks free respite for
parents, guardians, and custodians “who
need temporary assistance from child protective services and who have not been
the subject of a substantiated report (p. 7).” This interesting approach to
providing respite as a child abuse preventive measure did not win approval.
Only one of the 15 agencies in the
For more information about the Tucson Community
Respite Care Network, contact:
Susan Abagnale, Division Director
Casey Family Programs-Tucson
520/323-0886
E-mail sabagnale@casey.org
The Florida Respite Coalition is a nonprofit
formed in the fall of 1997 to address the needs of families in the state for
respite care. During its first four years the Coalition has expanded its base
to 300 members and contracted with the Department of Children and Families to
develop a statewide lifespan community-based respite care system. The Coalition
recently hired a full-time Executive Director and is planning to bring five
regional coordinators and a director of development on board in 2002. They will
be governed by a 21-member board. The mission of the Coalition is to “ensure
that each caregiver in need of respite will have access to available,
affordable, and quality respite care services” (Varnadore, 2001, p. 3).
Under the leadership of its Executive Director,
the Coalition has developed a business plan that seeks to address the terms of
its contract with the state to
measure
the need for respite care, identify populations respite care programs currently
serve, address service gap areas, and design a system that will:
·
Support respite care providers
·
Foster additional development of respite
care programs
·
Build capacity to meet identified need
and projected growth
·
Provide financial assistance to respite
care providers
·
Develop a statewide provider directory
·
Develop quality assurance standards
·
Provide technical assistance to respite
care providers
·
Provide information and resources to
families
·
Provide respite options to families
·
Provide continuous training to families
and providers
·
Ensure emergency respite is available
(Varnadore, 2001, pp. 3–4)
The Coalition sees its primary work over the
next three years as completing its transition from a grassroots volunteer organization
to one capable of taking on a full-range of professional business functions,
including needs identification, public relations and marketing, lobbying,
developing an integrated management information system, developing standards of
care, developing and maintaining relationships with the insurance and health
industries, funding, fiscal management and oversight, technical assistance, and
advocacy. The Coalition will not be involved in the provision of respite
services, but will serve as an outreach, educational, and resource coordinator
for the entire state.
Like all of the groups we contacted, the Florida
Coalition defines funding as one of its major challenges. What makes this group
different is its approach to overcoming the challenge and incorporating
fragmented funding sources into a coordinated system that enables regional
groups to access appropriate funds to meet the needs of their populations. By
making passage of funded federal and state lifespan respite bills one of its
top priorities, the Coalition hopes to become the primary funding mechanism for
legislative respite care dollars. In addition, it plans to work politically and
legislatively to identify and consolidate funds earmarked for respite. The
Coalition believes it will then be able to leverage these state and federal
funds for match to local communities, as well as to approach foundations,
corporations, and other funders for additional revenue.
A second area the Coalition envisions creating
is a comprehensive information and referral system supported by a management
information system that uses technology, such as a statewide toll-free
telephone number and an online resource database that will provide families,
caregivers, providers, and the general public access to respite services throughout
the state, as well as information on training, funding, volunteer
opportunities, legislative awareness, general respite information, parent
support groups, and scheduled board and focus group meetings.
The Coalition is also interested in integrating
standards of care and a provider training program. Both standards and training
would address the need to provide competent, safe, and when appropriate,
medically correct care; liability issues for providers, for the state, and for
the Coalition; and the desire of some constituencies to provide
consumer-directed care.
Unlike
The Coalition’s current contract is funded under
CBFRS (see Section III) on a cost reimbursement basis. The only other funding
they receive is from membership fees. At the end of the current contract, the
Coalition envisions negotiating a new that will enable it to be paid on a unit
basis for resource and referral services and to seek other funding streams.
Respite for foster parents is governed by
legislation that requires respite providers to attend training similar to that
required of foster parents. Foster families are permitted 12 days of respite
per year. Many foster families provide respite for one another. Respite is not
available through adoption subsidy in
For more information about the Florida Respite
Coalition, contact:
Rebecca Varnadore, MPA, Executive Director
407/740-8909
Toll-Free 866/357-3543
Fax 407/644-6548
E-mail floridarespite@aol.com
www.FloridaRespite.org
Summary
Four communities were interviewed for a more
in-depth look at how planned and crisis respite services are delivered around
the country. These sites are using various 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 has attempted to tackle funding challenges in ways that fit
their needs: blending funding, contracting with the state public agency,
seeking funding from public funds or from funds designated to serve special
populations.
There were some common elements between the four
sites. Whether formally or informally, each site organized a respite network or
coalition to better meet the respite needs of families. Funding was a challenge
mentioned by all sites—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,
their 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.
Practice and Policy Issues in Planned and Crisis Respite for Families
The following issues were identified from a
brief review of the literature, results of the CWLA and ARCH surveys, focus
groups, and site studies.
Barriers
for Families
Although families often need the break that
respite care can provide, some families fail to take advantage of respite
opportunities that may be available to them.
Lack of trust in the
agencies, institutions, and providers involved in the provision of respite
services is often cited as a primary reason for failure to take advantage of
existing respite care resources:
A family’s previous experience may affect their level of
trust. For example, it has been suggested that parents of children with serious
emotional disturbances may distrust the human service system because of a
traditional bias toward blaming the family for the child’s problems (Sturtevant
& Elliott, 1994).
A common thread in the
surveys, focus groups, and literature on respite care is the insufficient pool
of competent respite care providers. In some cases, agencies do not share
information about respite because the shortage of providers prevents them from
helping families take advantage of respite allowed by policy. Respite care,
like other child care work, is generally low-paid and undervalued by funders.
It is difficult to find individuals who are willing to do this work for the
little compensation provided, and families are sometimes uncomfortable turning
over their children to those who are willing to work for so little. When trained
medical care or the ability to handle children with behavioral problems or
emotional disturbance is needed, it may become even more difficult to find a
provider with the training necessary to provide appropriate care.
A participant in our
|
In a focus group conducted at the ARCH
National Respite and Crisis Care Networking Conference in · Knowing
about it; awareness ·
Finding providers ·
Number of respite slots available ·
Limited funding—most dollars come from
state agencies ·
Fear that children will be removed;
stigma; “looks bad” ·
Lack of trust ·
Guilt ·
Perception that respite agency is
connected with child protective services ·
Limits of the agency (for example,
agency services physically disabled, but family seeking respite for mental
health needs) ·
Geography—where the respite providers
are located ·
Ages of children ·
Number of children; sibling groups ·
Timeframes—too short or too long ·
Level of disability of the children ·
Paperwork to register—families too
overwhelmed to go through lengthy process; literacy; language barriers;
repetitiveness; lack of interagency coordination ·
Confidentiality |
Children who are in
the care and custody of a state or local child welfare agency are the
responsibility of that agency, no matter where the child resides. Agencies
control, to the extent they are able, the quality of care these children
receive by screening caregivers, running criminal and child abuse background
checks, assessing the home environment, setting training and other
requirements, and certifying or licensing homes before children can be placed
in them. This applies to kinship caregivers as well as to nonrelative foster
families, although some rules may be relaxed when the caregiver is a relative.
Rules may also vary depending on whether the relative is receiving a foster
care payment. It is reasonable, therefore, that agencies regulate the safety of
the same children when they are in the care of respite providers.
Of states with
specific policies on respite for resource families,
·
five require all respite providers to be
licensed foster parents;
· five
more have licensing requirements but permit other individuals who know the
child well to provide respite;
· two
include licensed respite providers or child day care providers;
· three
require background checks;
· one
uses agencies under contract;
· only
two have no licensing or approval process; and
· even
in states without statewide policies, licensing is required in four (Darer, 2001).
Unfortunately, this need for regulation may
inhibit the ability of foster parents and formal kinship caregivers to take
advantage of respite services. Foster homes are in short supply throughout the
country. In 1999 there were approximately 133,000 homes available for more than
500,000 children in out-of-home care (
Even in states in which foster parents provide
respite for one another on an informal basis, regulations may be problematic.
Many states limit the total number of children who can be cared for in a foster
home. If the selected respite provider has no spaces left for additional
children, even on a temporary respite basis, the foster family seeking respite
may not be permitted to use that provider. Clearly, it is not sufficient for a
state to only have a policy in place entitling resource families to respite
care. There must also be funding, availability of services, ready access, and
ease of use for resource families to turn the policy into practice. The
Once licensed, respite homes may become foster
care homes, thus removing them from the pool of respite providers. In fact,
some states take advantage of the fact that providing respite care may also be
a path to foster parenting. A foster parent recruitment effort in the state of
While some states cover payments for respite
services through direct payments to providers or reimbursement through the
resource families, some have the expectation that respite services will be paid
for out of the existing foster care maintenance rate or adoption subsidy. Even
if funds are built into these payments for the purpose of paying for respite,
resource families may be less likely to apply nonearmarked funds for respite,
since they have other expenses related to the care of the child. Some
reimbursement rates for respite care, while identified specifically for that
purpose, are quite low, making it difficult for resource families to find
quality caregivers willing to accept the rate offered. Some examples of rates
allowed by states for foster care respite are:
Other barriers frequently identified by resource
families is the lack of trust in respite providers and programs, and the
possibility of facing stigma for using respite.
·
In a review of respite programs for
grandparents and kinship caregivers, difficulty trusting respite caregivers was
identified as a common challenge (Meisel, 1999).
·
Adoptive parents, too, may fear that
accepting respite points to an inability to care for their child, or be afraid
that respite providers will not be able to manage behaviors or care for special
needs (Goldsmith, 1994).
·
The U.S. Department of Health and Human
Services (1994b) identified several factors involving trust that kept foster
parents from accessing respite services. Foster parents feared that: respite
providers were evaluating their performance as foster parents; respite
providers could not adequately care for the children in foster care; and the use
of respite care would demonstrate their own inability to cope with the demands
of foster caregiving.
·
Resource families’ fears about being
judged if they use respite may not be completely unfounded. As an example, one
state representative, responding to the National Resource Center for Foster
Care and Permanency Planning telephone survey (Darer, 2001) expressed the
opinion that respite might allow foster families to treat foster children
differently than biological children, such as by not taking them on family
vacations.
|
Barney, Levin, and Smith (1994) pointed out
additional concerns that foster parents may have about taking advantage of
respite services: ·
feeling that, since being a foster
parent is voluntary, they should not “need” respite; ·
afraid that use of respite services
would be a sign that they are not fit to be foster parents; ·
worry about handling paperwork; ·
fear of damaging their status, having
children removed from their homes, or losing their licenses if a problem
occurs during a respite stay; and ·
concern that respite providers may undo
progress made in a child’s behaviors. |
Funding and
Policy Issues
Funding for respite
services that can be accessed by families comes from many different sources.
Most of these funds come with restrictions on either eligibility requirements
or specific services provided. The problem for an individual family, agency, or
provider is to locate a funding source that will pay for the particular
services needed.
The four sites contacted for our study all cited
funding as a major concern, and all demonstrated considerable effort in
locating funding and matching it to the needs of their consumers.
Below are some funding sources that are
frequently used to provide respite services to families.
This program,
established by Title II of the Child Abuse Prevention and Treatment Act (CAPTA)
Amendments of 1996, was designed to support state efforts to create and operate
statewide networks of community-based, family-centered, prevention-oriented
family resource and support programs with the goal of strengthening families
and reducing the incidence of child abuse and neglect. One lead agency in each
state applies for and administers these funds. Information about each state,
including respite programs funded under CBFRS, can be found in the one-page
summaries of the states’ fiscal year 1999 performance reports prepared by the
Promoting Safe and Stable Families
This block grant program seeks to
preserve families by strengthening families and preventing and reducing child
abuse and neglect. Funds are based on the number of children in the state
receiving food stamps and require a 25% state match; they can be used to pay
respite and crisis care providers and to develop and maintain provider
networks. States set their own requirements for both consumers and providers.
On
Adoption Assistance
States receive federal
funds under the Title IV-E Adoption Assistance program to provide subsidies as
an incentive to families adopting children with special needs to facilitate the
adoption. Subsidies may be paid by federal or state funds, or in combination,
depending on the eligibility of the child, and each state administers its
program separately. Subsidy agreements are negotiated before the adoption is
finalized, but may be renegotiated. Agreements may include monthly maintenance
payments, medical coverage, and other services including respite care, if
permitted by state and county policies. Twenty states do not include respite in
their subsidy agreements, although respite may be available through state
offices providing services in specific areas such as mental health or
developmental disabilities; 18 states may include respite funds or services,
but eligibility is limited by factors such as health or mental health status or
total subsidy being paid to the family; 12 states and the District of Columbia
fund respite or provide it as a service, usually for a specific number of days
per month or year. For a description of each state’s position on respite, as
well as other provisions of their adoption subsidies, see the North American
Council on Adoptable Children’s State
Adoption Subsidy Profiles (2001) at
www.nacac.org/subsidy_stateprofiles.html.
Foster Care Programs
According to Darer (2001), at least 22
states build respite for foster families directly into their programs, either
offering or allowing a set number of days per year. This varies from
National Family Caregiver Support Program
(NFCSP)
This portion of the Older Americans Act provides $125 million for support services to family caregivers of individuals 60 and older and grandparents and other relatives 60 and older who raise children. Ten percent of funds can be used for support services (including respite care) for older grandparents and other relatives raising children, although states are not required to do so. Initial funding under this act was released in early 2001. For information on implementation of the NFCSP in a particular state, contact the State Unit on Aging. Contact information for each state is available on the website of the Administration on Aging at www.aoa.gov/aoa/pages/state.html.
There are various funding sources for families
seeking respite because of a child’s medical, developmental, behavioral,
emotional, or mental health status, all of which can apply to resource families
as well as to birth families. Lists of federal funding sources are provided by
ARCH (1999) and Day (1999). (See Section VII for complete references.)
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. In other cases, families may want to use respite but 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 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 that provide respite services to families include the Community
Based Family Resource and Support Program, the 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 the
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 differs within states and between states.
Recommendations
Organizations and communities are growing more
interested in the development of respite care programs to support families of
children with special needs, resource families, and for child abuse and neglect
prevention. This effort to explore the current status of respite programs for
families with children was a first attempt to describe the overall nature of
existing services and some of the major issues involved in providing them. Our
inquiry into the current state of such programs reveals that, while the overall
goal of family support is being addressed to a greater degree than in the past,
the services available are insufficient to meet the needs of families. We offer
the following recommendations as next steps in defining and creating a
responsive and workable system of respite care.
Address
the concerns that families have regarding agencies and providers.
Information obtained from site studies, focus
groups, telephone surveys, and the literature all point to lack of trust as a
major barrier to families accessing respite services. It is essential that
agencies and organizations seeking to provide respite care build a higher level
of trust with their families, beginning with reaching out to gain an
understanding of the particular issues that concern their client population(s).
This outreach should include children and youth’s opinions about respite care.
Once specific issues of trust are identified, efforts can be made to promote
better relationships and to address and resolve systemic problems that present
barriers. Initiatives undertaken in a particular jurisdiction would depend on
locally identified needs, but might include such diverse efforts as exploring
the attitudes of agency staff, including families on planning or review boards,
offering specialized training to respite providers and agency staff about
respite care as a valuable and needed service, media outreach campaigns, and
presenting clear messages to families and staff about the value of respite
care. Similar efforts should be made to assist families with issues of guilt,
sense of duty, fear of being judged, and other emotional barriers to accessing
respite services.
Develop
and promulgate best practice standards for planned and crisis respite services.
There are no national standards for the
provision of respite and crisis care services. Communities and states vary
widely in the expectations, regulations, licensing, and legislation that apply
to respite care providers. The development and dissemination of national
standards would provide important guidance to the field about how to best
develop and deliver these services. Issues to be considered in developing
standards include
·
clear definition of what respite is and
is not;
·
quality of care;
·
safety of care;
·
flexibility of services;
·
family involvement (including children
and youth) in the service plan;
·
basic safety training;
·
training for providers;
·
support for providers;
·
provider to client ratios;
·
supervisory caseload ratios;
·
provider rates and reimbursement;
·
in-home vs. out-of-home care
requirements;
·
expectations of services to be received;
·
value of services to the child, as well
as for the caregiver receiving respite;
·
involvement of the managed care industry;
·
individual providers vs. programs and
agencies;
·
confidentiality;
·
risk management;
·
liability;
·
services for underserved infants and
teens;
·
developmentally appropriate levels of
care; and
·
sibling care.
Conduct
research on existing respite programs that can inform cost-benefit analyses for
the use of respite in the prevention of child abuse and neglect, in the
retention of foster and kinship care homes, in supporting the adoption of
children with special needs, and in preventing adoption dissolution.
Although most child welfare professionals
believe that respite is an inexpensive and effective tool in supporting
families, the evidence to support this belief is primarily anecdotal. There is
a need for formal studies using cost-benefit analysis techniques to quantify
the value of respite services. With these figures in hand, agencies will be
better armed to face funders, legislators, and the general public with data
that prove the value of planned and crisis respite care.
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.
Research data are not, in themselves, sufficient
to cause a change in understanding about the value of respite services.
Training and education, in both formal (such as schools of social work, foster
parent preservice and inservice curricula, presentations to legislators and
funders) and informal settings (such as opinion and editorial pieces and
information booths at community events) are needed to bring about a clearer
grasp of the ways respite care can contribute to family preservation and child
abuse prevention efforts. In addition, advocates must learn to use the tools of
marketing and public relations to reach out to multiple audiences to present
both facts and personal stories that speak to people’s hearts as well as minds.
Support
state and national efforts to legislate the creation and maintenance of
lifespan respite networks.
The Lifespan Respite Task Force is a group of
national organizations and state coalitions convened by the National Respite
Coalition. The focus of their work is to promote lifespan respite legislation
at the state and national levels. They have drafted a lifespan discussion draft
bill that contains three main points.
·
Establish statewide lifespan respite
entities to identify, assess, and coordinate respite and crisis care funding
and services in each state, and to plan the development, identification, or
enhancement of new or existing local respite infrastructures;
·
Identify statewide respite
infrastructures composed of local entities that can directly serve families;
and
·
Authorize funds for implementing respite
and crisis care programs.
Information
about the Task Force, its work, and the proposed legislation can be found at
the website of the National Respite Coalition at www.chtop.org/TForce.htm.
Similar
legislation can be enacted at the state level. As of April 2001, Lifespan
Respite Acts have been passed in
In
addition to these five major recommendations, a number of additional issues,
some more applicable to state or local attention, are ripe for further inquiry:
·
assessing the need and availability of
services, including the amount of time allowable per family, per episode, and
per year;
·
parental choice in selecting providers;
·
parental involvement in training providers;
·
funding and eligibility requirements;
·
the emergence of respite coalitions to
share resources, avoid duplication of services, and address common issues;
·
location of services;
·
providing materials and services in
languages other than English;
·
licensing requirements;
·
availability of 24-hour care;
·
how families are informed about the
availability of services;
·
the effect of wait lists and having to
turn families away if other resources are not available;
·
resource and referral capabilities;
·
provider recruitment; and
·
differences in geography and population
density, urban vs. rural settings, etc.
Finally,
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 tangibly by providing relief, support, and resources needed to
successfully care for children.
References
Abagnale, S. (