Respite Care
Grants and Cooperative Agreements Awarded to Implement the Lifespan Respite Care Act Gao ID: GAO-11-28R October 22, 2010Individuals who are limited in their capacity for self-care because of a physical, cognitive, or mental disability or condition that results in a functional impairment may depend on family caregivers for assistance with routine daily activities. According to a 2009 study by the National Alliance for Caregiving and AARP, an estimated 65.7 million people, or 29 percent of the population, had served as unpaid family caregivers to an adult or child with special needs in the previous 12 months, providing an average of about 20 hours of care per week. Activities caregivers conduct can range from assistance with routine daily tasks like bathing and dressing, to carrying out more complex health-related interventions like administering medication and wound care. The responsibilities of caregiving may present physical, emotional, and financial challenges for caregivers. In December 2006, the Lifespan Respite Care Act of 2006 (LRCA) was enacted to improve the delivery and quality of respite care services available to families across age and disability groups by establishing coordinated lifespan respite systems. The LRCA authorized the Secretary of the Department of Health and Human Services (HHS) to award competitive grants or cooperative agreements to eligible state agencies7 to: (1) expand and enhance respite care services to family caregivers; (2) improve the statewide dissemination and coordination of respite care; and (3) provide, supplement, or improve access and quality of respite care services to family caregivers. The LRCA also authorized the Secretary of HHS to award a grant or cooperative agreement to a public or private nonprofit entity to establish a National Resource Center on Lifespan Respite Care to: (1) maintain a national database on lifespan respite care; (2) provide training and technical assistance to state, community, and nonprofit respite care programs; and (3) provide information, referral, and educational programs to the public on lifespan respite care. For fiscal years 2007 through 2011, over $289 million was authorized to carry out activities under the Act. Since the enactment of the LRCA, $5 million has been allocated to date to implement the federal Lifespan Respite Care Program--$2.5 million in each of fiscal years 2009 and 2010. The Administration on Aging (AOA), the agency within HHS responsible for administering the Lifespan Respite Care Program, has had two competitive grant announcements for state agencies, with funding starting in September 2009 and September 2010 respectively. Both announcements offered federal funding of up to $200,000 per award for a 3-year project period; grantees are required to provide at least a 25 percent match of total project costs. In addition, in May 2009, AOA announced the availability of funding for a public or nonprofit entity to enter into a cooperative agreement with AOA to provide caregiver and respite program development and technical assistance, including establishing the National Resource Center on Lifespan Respite Care. The LRCA required that GAO evaluate lifespan respite programs. This report describes the grants and cooperative agreements that have been awarded to implement the requirements of the LRCA.
AOA awarded a total of almost $5 million through 24 LRCA grants and one cooperative agreement in 2009 and 2010. Specifically, AOA awarded grants to agencies in 24 states--12 states in September 2009 and 12 states in September 2010. The grants, which provide funding for a 3-year project period, ranged from $110,000 to $200,000. Grants totaled $2,293,378 and $2,254,078 in 2009 and 2010, respectively. States plan to use the grant funds for a variety of activities including respite care provider training, the development of respite care provider registries, public awareness and education initiatives, and improving coordination across the various agencies that handle respite care services. In addition to the state grants, AOA awarded a 3-year cooperative agreement to the Family Caregiver Alliance (FCA) in September 2009 to provide caregiver and respite care program development and technical assistance; FCA subcontracted with ARCH for the respite care portions of the cooperative agreement. As of September 2010, ARCH had received a total of $381,622 in LRCA funds through its contract with FCA--$206,622 in September 2009 and $175,000 in September 2010. ARCH is using these funds for activities such as providing in-person and web-based training, conducting site visits of state grantees, preparing and updating fact sheets and issue briefs on respite care, preparing quarterly technical assistance newsletters, and updating an online respite care locator service.
GAO-11-28R, Respite Care: Grants and Cooperative Agreements Awarded to Implement the Lifespan Respite Care Act
This is the accessible text file for GAO report number GAO-11-28R
entitled 'Respite Care: Grants and Cooperative Agreements Awarded to
Implement the Lifespan Respite Care Act' which was released on October
22, 2010.
This text file was formatted by the U.S. Government Accountability
Office (GAO) to be accessible to users with visual impairments, as
part of a longer term project to improve GAO products' accessibility.
Every attempt has been made to maintain the structural and data
integrity of the original printed product. Accessibility features,
such as text descriptions of tables, consecutively numbered footnotes
placed at the end of the file, and the text of agency comment letters,
are provided but may not exactly duplicate the presentation or format
of the printed version. The portable document format (PDF) file is an
exact electronic replica of the printed version. We welcome your
feedback. Please E-mail your comments regarding the contents or
accessibility features of this document to Webmaster@gao.gov.
This is a work of the U.S. government and is not subject to copyright
protection in the United States. It may be reproduced and distributed
in its entirety without further permission from GAO. Because this work
may contain copyrighted images or other material, permission from the
copyright holder may be necessary if you wish to reproduce this
material separately.
GAO-11-28R:
United States Government Accountability Office:
Washington, DC 20548:
October 22, 2010:
The Honorable Tom Harkin:
Chairman:
The Honorable Michael B. Enzi:
Ranking Member:
Committee on Health, Education, Labor and Pensions:
United States Senate:
The Honorable Henry A. Waxman:
Chairman:
The Honorable Joe Barton:
Ranking Member:
Committee on Energy and Commerce:
House of Representatives:
Subject: Respite Care: Grants and Cooperative Agreements Awarded to
Implement the Lifespan Respite Care Act:
Individuals who are limited in their capacity for self-care because of
a physical, cognitive, or mental disability or condition that results
in a functional impairment may depend on family caregivers for
assistance with routine daily activities. According to a 2009 study by
the National Alliance for Caregiving and AARP, an estimated 65.7
million people, or 29 percent of the population, had served as unpaid
family caregivers to an adult or child with special needs in the
previous 12 months, providing an average of about 20 hours of care per
week.[Footnote 1] Activities caregivers conduct can range from
assistance with routine daily tasks like bathing and dressing, to
carrying out more complex health-related interventions like
administering medication and wound care. The responsibilities of
caregiving may present physical, emotional, and financial challenges
for caregivers.
Caregivers can receive temporary relief from their caregiving
responsibilities through the use of respite care--planned or emergency
care provided to an adult or child with special needs, such as an
individual with muscular dystrophy, traumatic brain injury, or
dementia. Respite care may be provided in a variety of settings,
including homes, adult day care centers, or residential care
facilities. Research has shown respite care to have benefits for both
the caregiver and care recipient, such as reducing stress and
improving the physical and emotional health of the caregiver, while
reducing the likelihood of hospitalization or institutionalization of
the care recipient.[Footnote 2] However, according to the 2009 family
caregivers study by the National Alliance for Caregiving and AARP,
only 12 percent of caregivers have used respite care services.
[Footnote 3]
Funding for respite care can come from a variety of sources, including
the federal government, state governments, or other sources such as
private foundations. Federal funding for respite care may be available
under various programs.[Footnote 4] For example, the Medicaid Home and
Community-Based Waiver Program permits states to pay for respite care
services, and the National Family Caregiver Support Program,
authorized by the Older Americans Act of 1965, as amended, provides
funds to each state to provide information to caregivers about
available services, including respite care.[Footnote 5] Programs that
provide funding for respite care, however, often have specific
eligibility criteria, based, for example, on age, disability, or
family income. The disparate nature of funding streams and eligibility
requirements for respite care may result in challenges for families,
such as waiting lists, complex application processes, or difficulty
finding providers able to deliver respite care appropriate to their
particular needs and situation.
In December 2006, the Lifespan Respite Care Act of 2006 (LRCA) was
enacted to improve the delivery and quality of respite care services
available to families across age and disability groups by establishing
coordinated lifespan respite systems.[Footnote 6] The LRCA authorized
the Secretary of the Department of Health and Human Services (HHS) to
award competitive grants or cooperative agreements to eligible state
agencies[Footnote 7] to: (1) expand and enhance respite care services
to family caregivers; (2) improve the statewide dissemination and
coordination of respite care; and (3) provide, supplement, or improve
access and quality of respite care services to family caregivers. The
LRCA also authorized the Secretary of HHS to award a grant or
cooperative agreement to a public or private nonprofit entity to
establish a National Resource Center on Lifespan Respite Care to: (1)
maintain a national database on lifespan respite care; (2) provide
training and technical assistance to state, community, and nonprofit
respite care programs; and (3) provide information, referral, and
educational programs to the public on lifespan respite care. For
fiscal years 2007 through 2011, over $289 million was authorized to
carry out activities under the Act.
Since the enactment of the LRCA, $5 million has been allocated to date
to implement the federal Lifespan Respite Care Program--$2.5 million
in each of fiscal years 2009 and 2010. The Administration on Aging
(AOA), the agency within HHS responsible for administering the
Lifespan Respite Care Program, has had two competitive grant
announcements for state agencies, with funding starting in September
2009 and September 2010 respectively. Both announcements offered
federal funding of up to $200,000 per award for a 3-year project
period; grantees are required to provide at least a 25 percent match
of total project costs. In addition, in May 2009, AOA announced the
availability of funding for a public or nonprofit entity to enter into
a cooperative agreement with AOA to provide caregiver and respite
program development and technical assistance, including establishing
the National Resource Center on Lifespan Respite Care.[Footnote 8]
The LRCA required that GAO evaluate lifespan respite programs. This
report describes the grants and cooperative agreements that have been
awarded to implement the requirements of the LRCA.[Footnote 9]
To address this objective, we interviewed officials from AOA and
reviewed related documentation including grant applications, notice of
awards, grantee work plans, and semi-annual progress reports. We also
interviewed the program director of the ARCH National Respite Network
and Resource Center (ARCH) to obtain background information on respite
care and information about the National Resource Center on Lifespan
Respite Care. ARCH is a nonprofit organization that works to assist
and promote the development of quality respite care programs by
providing training and technical assistance to state and local respite
care programs, and helping families locate respite care services in
their communities.
We conducted this performance audit from July 2010 through October
2010 in accordance with generally accepted government auditing
standards. Those standards require that we plan and perform the audit
to obtain sufficient, appropriate evidence to provide a reasonable
basis for our findings and conclusions based on our audit objectives.
We believe that the evidence obtained provides a reasonable basis for
our findings and conclusions based on our audit objectives.
AOA Has Awarded 24 Grants and One Cooperative Agreement to Implement
LRCA Requirements:
AOA awarded a total of almost $5 million through 24 LRCA grants and
one cooperative agreement in 2009 and 2010.[Footnote 10] Specifically,
AOA awarded grants to agencies in 24 states--12 states in September
2009 and 12 states in September 2010.[Footnote 11] The grants, which
provide funding for a 3-year project period, ranged from $110,000 to
$200,000. Grants totaled $2,293,378 and $2,254,078 in 2009 and 2010,
respectively. States plan to use the grant funds for a variety of
activities including respite care provider training, the development
of respite care provider registries, public awareness and education
initiatives, and improving coordination across the various agencies
that handle respite care services. (See enclosure I for more
information about the award amount, project objectives, and planned
activities of each state grantee.)
In addition to the state grants, AOA awarded a 3-year cooperative
agreement to the Family Caregiver Alliance (FCA) in September 2009 to
provide caregiver and respite care program development and technical
assistance; FCA subcontracted with ARCH for the respite care portions
of the cooperative agreement.[Footnote 12] As of September 2010, ARCH
had received a total of $381,622 in LRCA funds through its contract
with FCA--$206,622 in September 2009 and $175,000 in September 2010.
[Footnote 13] ARCH is using these funds for activities such as
providing in-person and web-based training, conducting site visits of
state grantees, preparing and updating fact sheets and issue briefs on
respite care, preparing quarterly technical assistance newsletters,
and updating an online respite care locator service.
Agency Comments:
We provided a draft of this report to HHS for review and comment. In
its comments, HHS indicated that the report provided an excellent
overview of the department's efforts, to date, to implement the
Lifespan Respite Care Program and was a useful resource for anyone
interested in learning about the development of respite care systems
(see enclosure II). HHS also provided technical comments that we
incorporated as appropriate.
We are sending copies of this report to the Secretary of Health and
Human Services. In addition, the report will also be available at no
charge on the GAO website at [hyperlink, http://www.gao.gov].
If you or your staffs have any questions regarding this report, please
contact me at (202) 512-7114 or draperd@gao.gov. Contact points for
our Offices of Congressional Relations and Public Affairs may be found
on the last page of this report. GAO staff who made major
contributions to this report are listed in enclosure III.
Signed by:
Debra A. Draper:
Director, Health Care:
Enclosures - 3:
[End of section]
Enclosure I: Lifespan Respite Care Program State Grantees' Award
Amounts, Project Objectives, and Planned Activities:
Table 1: Award Amount, Project Objectives, and Planned Activities, by
Fiscal Year 2009 Lifespan Respite Care Program Grantee:
Grantee: Alabama Department of Senior Services;
Award amount: $200,000;
Project objectives:
* Conduct a statewide public education campaign;
* Explore new grant possibilities and other resource-generating
opportunities;
* Enhance the capacity of the Alabama Lifespan Respite Resource
Network;
* Identify all agencies and resources currently providing respite
funding;
* Identify all caregiver training programs;
* Expand training for the staff of the Alabama Disability Resource
Center and expand their website to include respite resources;
* Work collaboratively with a range of partners to recruit and train
respite care workers and volunteers;
Examples of planned activities:
* Help communities establish "Sharing the Care" groups that utilize
volunteer stakeholders[A];
* Develop a training module and other materials for groups interested
in implementing a "Sharing the Care" project;
* Conduct a statewide survey to identify caregiver needs and provide
information about gaps and barriers to respite care.
Grantee: Arizona Department of Economic Security;
Award amount: $199,128;
Project objectives:
* Expand the reach of the respite care program to include all
caregivers that could benefit;
* Ensure the program's effectiveness by making respite care more
accessible, practical, and culturally sensitive;
* Improve public awareness through a social marketing campaign and by
establishing a toll-free respite care hotline;
* Assure consistent delivery of respite care through implementation of
a new caregiver assessment tool;
* Coordinate provision of emergency respite to caregivers identified
by Adult Protective Services;
Examples of planned activities:
* Roll out a statewide public awareness campaign using radio,
television, and print media, and a toll-free respite care hotline;
* Complete a pilot program using a caregiver assessment tool as part
of the authorization process for respite care.
Grantee: Connecticut Department of Social Services;
Award amount: $199,934;
Project objectives:
* Establish a database to identify all respite care services and
funding sources in the state;
* Promote networking by establishing working relationships between key
agencies and organizations involved with respite care;
* Provide public awareness and information;
* Provide training opportunities to caregivers and service
organizations;
* Enable family caregivers to make informed decisions about respite
care services;
* Establish a single point of entry for all respite care services;
Examples of planned activities:
* Establish training protocols according to age, disability, and other
specialized needs;
* Document available respite care services, provider options, and
funding information in a database;
* Hold focus groups for caregivers to assist them in determining
suitable respite care options.
Grantee: District of Columbia Office on Aging;
Award amount: $199,999;
Project objectives:
* Expand and enhance respite care services by establishing the
infrastructure for a lifespan respite program through recruitment and
training;
* Improve coordination and dissemination of service delivery between
different programs;
* Promote awareness of respite care programs;
* Conduct a needs assessment and advocate for services that are not
currently available;
Examples of planned activities:
* Educate faith-based organizations about how to develop a group of
trained volunteer respite care providers;
* Conduct an evaluation to determine available resources, needs, and
key stakeholders required to sustain the respite care program
infrastructure and provide comprehensive services.
Grantee: Illinois Department on Aging;
Award amount: $200,000;
Project objectives:
* Create a respite care website;
* Provide respite care services;
* Improve collaboration among state agencies;
* Train caregivers and volunteers;
* Create a statewide respite taskforce;
* Create a statewide toll-free respite number;
* Provide technical assistance and training materials;
* Create a public awareness campaign;
* Evaluate the effectiveness of the project;
Examples of planned activities:
* Create a respite care website that includes a list of providers by
the geographical location and special need populations served, and a
list of caregiver training opportunities;
* Publicize the toll-free respite number via a media campaign and
outreach to relevant individuals and organizations, such as medical
providers, law enforcement agencies, and pharmacies.
Grantee: Nevada Aging and Disability Services Division;
Award amount: $200,000;
Project objectives:
* Create a "Respite Care Network" in partnership with several other
organizations;
* Improve the quality of respite care services by developing quality
standards;
* Provide group and individual training via web resources, interactive
videoconference technology, face-to-face sessions, and DVDs;
* Empower family caregivers to solicit, train and employ respite care
volunteers;
Examples of planned activities:
* Develop a "blog" for information sharing among partners, caregivers
and respite care providers;
* Establish a partnership with Nevada 2-1-1, a statewide information
and referral call center, to train operators to recognize crisis
situations and signs of caregiver burnout.
Grantee: New Hampshire Department of Health and Human Services,
Special Medical Services;
Award amount: $110,000;
Project objectives:
* Select appropriate training modules for respite care providers;
* Develop training modules on caring for those with Severe Emotional
Disturbance (SED) or Traumatic Brain Injury (TBI);
* Develop a marketing campaign to recruit providers and train those
providers;
* Create a registry of trained respite care providers;
* Institute a pilot respite care program for those with SED;
* Create an advisory group to oversee the program;
Examples of planned activities:
* Create a registry of trained providers using web-based trainings
including ones targeted for the SED and TBI populations;
* Conduct outreach to potential respite care providers from multi-
cultural backgrounds.
Grantee: North Carolina Department of Health and Human Services;
Award amount: $184,328;
Project objectives:
* Research, adapt, and implement a model Lifespan Respite Care Program;
* Improve statewide coordination of respite care services;
* Enhance infrastructure through new relationships with faith-based
and medical communities;
* Develop an innovative statewide respite care education and public
awareness initiative;
Examples of planned activities:
* Form a "State Stakeholder Advisory Team" to enhance access, identify
gaps, and improve education and training;
* Train North Carolina Baptist Aging Ministry volunteers to share
respite information, plan and implement recruitment activities, and
provide respite care services;
* Increase the inventory of respite care resources in the state's web-
based health services information portal.
Grantee: Rhode Island Department of Elderly Affairs;
Award amount: $200,000;
Project objectives:
* Coordinate respite care through the state's Medicaid program[B];
* Expand the statewide TimeBanks program, a volunteer voucher
program[C];
* Disseminate information on respite care to clinics, physician
offices, and support agency offices;
Examples of planned activities:
* Help develop guidelines for the new Medicaid respite care benefit;
* Publicize the TimeBanks program to increase volunteers and awareness;
* Hire a coordinator to connect volunteers and those who need services.
Grantee: South Carolina Lieutenant Governor's Office on Aging;
Award amount: 199,989;
Project objectives:
* Establish a coordinated respite system that expands and enhances
respite care services statewide;
* Establish a State Advisory Council;
* Provide outreach, information and screening for respite care
services;
* Disseminate information and training materials to family caregivers
to mobilize social supports and encourage earlier and increased use of
respite care;
* Build capacity to recruit and train volunteer respite care
providers, particularly in rural areas;
Examples of planned activities:
* Update a web-based information system by identifying regional and
local respite resources;
* Conduct workshops at a minimum of four family or provider-oriented
conferences each year;
* Create a "ToolKit for Developing a Voucher Program within a Faith
Community."
Grantee: Tennessee Commission on Aging and Disability;
Award amount: $200,000;
Project objectives:
* Facilitate coordination among respite care programs and providers;
* Increase access through a "no wrong door" system that connects
people to services regardless of which agency they first contact;
* Develop a plan to collect and analyze data about the respite care
needs of families and the provision of services;
* Enhance the abilities of the Tennessee Respite Coalition to respond
to needs through a Respite Specialist;
* Increase opportunities for provider and caregiver training;
* Increase respite care volunteer training;
Examples of planned activities:
* Identify and collaborate with one college or university per year to
establish volunteer respite training collaborations;
* Provide case management services through the toll-free Helpline;
* Develop a plan to implement a uniform statewide data collection
system.
Grantee: Texas Department of Aging and Disability Services;
Award amount: $200,000;
Project objectives:
* Create the Texas Respite Coordination Center;
* Increase the availability of respite care services;
* Implement a caregiver awareness campaign;
* Develop best practices, materials and tools for respite care
providers;
Examples of planned activities:
* Conduct five forums throughout the state to highlight training
curriculums and best practices for recruiting providers and other
capacity building resources;
* Add a caregiver self assessment tool and links to statewide respite
care resources to the state agency's website;
* Compile and annually update an inventory of respite care services.
Grantee: Total;
Award amount: $2,293,378.
Source: GAO summary of information from the Administration on Aging's
notice of awards and grantees' applications.
[A] The "Sharing the Care" model adopted by Alabama consists of local
groups that utilize volunteer stakeholders living and working in a
specific area to carry out activities related to public awareness and
development of new respite care resources.
[B] Medicaid is a joint federal-state program that finances health
care for certain categories of low-income individuals. Rhode Island's
Medicaid program, which has a goal to increase community living for
individuals who may otherwise be placed in an institution, provides
coverage for respite care services.
[C] The Time Banks program adopted by Rhode Island manages and tracks
community currency called Time Dollars. Individuals earn Time Dollars
for time they spend helping another person and can use the Time
Dollars they earn to obtain services for themselves or others.
[End of table]
Table 2: Award Amount, Project Objectives, and Planned Activities, by
Fiscal Year 2010 Lifespan Respite Care Program Grantee:
Grantee: Delaware Department of Health and Social Services;
Award amount: $188,432;
Project objectives:
* Improve lifespan respite infrastructure;
* Improve the provision of information and awareness about respite
services;
* Streamline access to respite services through the Delaware Aging and
Disability Resource Center (ADRC)[A];
* Increase availability of respite services;
Examples of planned activities:
* Expand an existing voucher program to serve more caregivers;
* Open two new Caregiver Resource Centers outside of Senior Centers to
appeal to a broader range of caregivers;
* Enhance the respite care website to include individual respite
workers in addition to agency-based providers.
Grantee: Kansas Department on Aging;
Award amount: $188,821;
Project objectives:
* Expand coordination, participation and dissemination of respite
resources resulting in a statewide respite network;
* Increase family caregiver access to respite care providers;
* Increase availability of qualified respite care providers and
skilled caregivers statewide;
Examples of planned activities:
* Conduct statewide "listening tours" to convene individuals to
discuss current respite care services and needs;
* Provide free training opportunities and 20 respite care scholarships
to caregivers who attend the listening tours.
Grantee: Louisiana Department of Health and Hospitals, Office of Aging
and Adult Services;
Award amount: $188,838;
Project objectives:
* Enhance and coordinate information available about respite services;
* Increase consumer knowledge and acceptance of respite services;
* Increase the availability of respite care;
Examples of planned activities:
* Encourage respite care providers to add their information to the
ADRC database and use respite as a key word for their listing;
* Implement a public awareness campaign including designating a
"Caregiver Burnout Month" intended to provide an annual opportunity to
promote respite care in the state.
Grantee: Massachusetts Department of Developmental Services;
Award amount: $188,950;
Project objectives:
* Develop and formalize the Massachusetts Respite Coalition;
* Improve statewide dissemination and coordination of respite care by
developing a comprehensive accessible directory of services;
* Enhance and expand the availability of respite services by improving
training and recruitment of providers and developing a strategic plan
and list of policy recommendations;
Examples of planned activities:
* Develop a survey of providers to assess existing respite care
resources, eligibility criteria, and potential funding streams;
* Create print and web-based directories of respite care resources;
* Develop a set of minimum quality standards and written guidelines
for respite care providers.
Grantee: Minnesota Department of Human Services, Board on Aging;
Award amount: $188,950;
Project objectives:
* Jumpstart, train and support Regional Lifespan Respite
Collaboratives;
* Enhance the listing of respite resources in the state's online
database;
* Expand the state's online page for caregivers to include more
information on respite care resources;
* Train community members as "lifespan respite ambassadors" to
increase awareness;
* Increase coordination among public programs;
* Increase consumer choice and control of services;
Examples of planned activities:
* Map existing respite resources seeking evidence of underutilization
of resources, signs of latent capacity and opportunities to share
resources;
* Expand the state's online database to provide information and
resources regarding respite care services;
* Coordinate and enhance the quality assurance and monitoring process
for all respite care workers.
Grantee: Nebraska Department of Health and Human Services;
Award amount: $178,322;
Project objectives:
* Replace existing respite care database with a web-based system;
* Expand on-line assessments to include identification of respite
needs and make respite referrals through the ADRC;
* Expand peer support options available through the ADRC website;
* Educate Lifespan Respite Program coordinators about the utility of
the ADRC;
* Educate family caregivers about the resources available through the
ADRC;
* Develop or identify a statewide caregiver crisis planning tool;
* Identify respite care providers willing to provide crisis/emergency
care;
* Identify and develop training for first responders in need of
information about emergency respite care;
* Deliver training for first responders;
* Develop criteria for providing very short-term crisis respite care
funding;
* Expand awareness of respite care services;
Examples of planned activities:
* Bring respite provider information to the Nebraska Resource Referral
System, a statewide human services database;
* Create training materials for Lifespan Respite Program Coordinators
and family caregivers.
Grantee: New York State Office for the Aging;
Award amount: $188,950;
Project objectives:
* Develop a coordinated system of accessible, community-based respite
care services;
* Conduct a statewide inventory of respite care services;
* Identify and facilitate the development of respite care services for
underserved populations;
* Identify current programs that train caregivers and provide a
methodology to link caregivers to programs;
* Determine good recruitment and training practices and establish
linkages to recruitment and training of volunteers;
* Raise awareness about respite care;
* Develop a strategic approach to ensure sustainability of respite
care delivery and management;
Examples of planned activities:
* Form a statewide caregiver network;
* Conduct an inventory of all respite care services in order to build
a comprehensive respite care database, which will be merged into the
existing state resource directory;
* Analyze the use of public funds and search for private funding
opportunities.
Grantee: Oklahoma Department of Human Services;
Award amount: $188,950;
Project objectives:
* Provide technical assistance and seed grants to community groups to
start or enhance respite care services;
* Provide respite care vouchers to caregivers not eligible for funding;
* Enhance statewide outreach and recruitment efforts through public
speaking engagements and development of promotional materials;
* Strengthen training collaboration;
Examples of planned activities:
* Implement the Mobile Respite Pilot Project, which will provide
respite care in non-traditional locations using a bus and a mobile
respite team;
* Provide caregiver training and education sessions;
* Redesign and expand an existing respite guide to include information
on new target populations and resources.
Grantee: Pennsylvania Department of Aging;
Award amount: $187,015;
Project objectives:
* Establish a statewide Lifespan Respite Care Advisory Council;
* Improve coordination among state and local agencies and
organizations that provide or fund respite care services and those
that provide information and referrals to families;
* Increase awareness of lifespan respite care needs and services;
Examples of planned activities:
* Develop and administer a mini grant program targeted toward the
provision of emergency and unplanned respite for caregivers;
* Create a website with training opportunities and links to provider
resources.
Grantee: Utah Department of Human Services;
Award amount: $188,950;
Project objectives:
* Institute a comprehensive respite care program with an accessible
point of entry, a telephone helpline, and web-based access;
* Expand respite care services and scholarships and develop private
funding sources to sustain the scholarships;
* Implement a new caregiver training program statewide and add modules
to support non-service connected caregivers of veterans with dementia;
* Facilitate training and job access for candidates entering the field
of professional caregiving and provide volunteer training;
Examples of planned activities:
* Organize a series of town hall meetings to inform participants about
the state's respite care program;
* Execute a Lifespan Respite Care Conference with 300 caregivers,
agency and provider organization representatives;
* Train 50 new respite care providers.
Grantee: Washington Department of Social and Health Services;
Award amount: $188,950;
Project objectives:
* Build the capacity of the respite coalition through new and existing
partnerships;
* Provide information to caregivers to enable them to recruit, hire,
and work with respite care providers;
* Collaborate on a statewide volunteer respite care model for the
recruitment, training, support and retention of volunteer respite care
providers;
* Develop outreach strategies to inform the public about the single
point of entry for inquiries about respite care;
Examples of planned activities:
* Implement a partnership with Girl Scouts of Western Washington aimed
at providing respite care services to caregivers of children living
with relatives;
* Increase Camp Fire USA outreach in advertising its summer day and
residential camp programs to give caregivers respite[B];
* Secure additional feedback from ethnic caregivers about their needs,
perceptions, and barriers to respite care.
Grantee: Wisconsin Department of Health Services;
Award amount: $188,950;
Project objectives:
* Modify Easter Seals Wisconsin's training curriculum in order to use
it as base-level training for all respite care providers;
* Deliver the revised training curriculum in 6 different regions of
the state;
* Deliver half-day workshops in 6 different regions for respite care
providers to learn best practices;
* Develop a public awareness campaign;
* Implement a statewide public awareness campaign;
* Expand Wisconsin Quality Home Care Commission's care registry
referral database to include trained respite workers;
* Communicate respite care provider trainings and the expanded care
registry to long-term care stakeholders;
Examples of planned activities:
* Organize a series of training sessions for respite care providers to
learn best practices for special populations;
* Enter respite care providers into a web-based registry and matching
service.
Grantee: Total;
Award amount: $2,254,078.
Source: GAO summary of information from the Administration on Aging's
notice of awards and grantees' applications.
[A] An ADRC is a single point of entry into the long-term supports and
services system that provides information and assistance to older
adults and people with disabilities about long-term care services and
support.
[B] Camp Fire USA is a not-for-profit youth development organization,
which runs summer day and residential camp programs for children,
including children with medical conditions. It also runs a 5 hour
program on Saturdays for children with disabilities aged 4 to 12 along
with their siblings, to provide respite for caregivers.
[End of table]
[End of section]
Enclosure II: Comments from the Department of Health and Human
Services:
Department Of Health & Human Services:
Office Of The Secretary:
Assistant Secretary for Legislation:
Washington, DC 20201:
October 5, 2010:
Debra Draper:
Director, Health Care:
U.S. Government Accountability Office:
441 G Street N.W.
Washington, DC 20548:
Dear Ms. Draper:
Attached are comments on the U.S. Government Accountability Office's
(GAO) correspondence entitled: "Respite Care: Grants and Cooperative
Agreements Awarded to Implement the Lifespan Respite Care Act" (GAO 11-
28R).
The Department appreciates the opportunity to review this
correspondence before its publication.
Sincerely,
Signed by:
Jim R. Esquea:
Assistant Secretary for Legislation:
Attachment:
[End of letter]
General Comments of the Department of Health and Human Services (HHS)
On The Government Accountability Office's (GAO) Draft Correspondence
Entitled, "Respite Care: Grants And Cooperative Agreements Awarded To
Implement The Lifespan Respite Care Act "(GAO-11-28R):
The Department appreciates the opportunity to review and comment on
this draft correspondence.
Family caregivers perform a broad range of activities that include
assisting care recipients with routine daily tasks to more complex
interventions like medication management and wound care. The demand
placed on family caregivers often exacts physical, emotional and
financial challenges on them. Fortunately, respite services are
available to provide temporary relief from caregiving responsibilities
and enables caregivers to rest and recharge, thus ensuring their
capacity to provide care longer and prevent unnecessary and premature
institutionalization for their loved ones.
The Lifespan Respite Care Act of 2006 is designed to improve the
delivery and quality of respite services across age and disability
groups by establishing coordinated systems of respite care services.
Since 2009, the Administration on Aging (AoA) has worked to
implement the requirements of the Act in an effort to enable states to
build more efficient and effective respite care delivery systems.
The information in this draft correspondence is clear and concise,
highlighting the efforts of HHS and AoA to implement the program
according to Statute and Congressional Intent. The summary tables
provide a clear and easy reference to the Project Objectives and
Planned Activities for the states that received grants in FY 2009 and
FY 2010.
Given the relative newness of the Lifespan Respite Care Program, this
document provides an excellent overview of }MS implementation efforts
to date and is a useful resource for anyone interested in learning
more about the development of respite care systems. It will help to
highlight the critical role family caregivers play in the system of
long term services and supports in the United States and the
importance of efficient and effective respite care systems in helping
caregivers continue their important work.
[End of section]
Enclosure III: GAO Contact and Staff Acknowledgments:
Contact:
Debra A. Draper at (202) 512-7114 or draperd@gao.gov:
Acknowledgments:
In addition to the contact named above, Michelle B. Rosenberg,
Assistant Director; Jennie F. Apter; Allison Liebhaber; Christina E.
Ritchie; and Jennifer Whitworth made key contributions to this report.
[End of section]
Footnotes:
[1] National Alliance for Caregiving/AARP, Caregiving in the U.S. 2009
(November 2009). A child with special needs requires care or
supervision beyond that required of children generally to meet his or
her basic needs or prevent injury, such as a child with a medical,
behavioral, or other condition or disability.
[2] For example, see: Susan L. Folden and Sherrilyn Coffman, "Respite
Care for Families of Children with Disabilities," Journal of Pediatric
Health Care, vol. 7, no. 3, (1993); and Saundra L. Theis, Joan H.
Moss, and Merry Ann Pearson, "Respite for Caregivers: An Evaluation
Study," Journal of Community Health Nursing, vol. 11, no. 1 (1994).
[3] National Alliance for Caregiving/AARP, Caregiving in the U.S. 2009
(November 2009).
[4] In the future, the Patient Protection and Affordable Care Act may
provide another potential source of funding for respite care, as it
established a national, voluntary insurance program for purchasing
community living services and supports, including respite care, known
as the Community Living Assistance Services and Supports (CLASS)
program. Pub. L. No. 111-148, §§ 8002, 10801, 124 Stat. 119, 828-47,
1015. The CLASS program was designed to provide individuals with
functional limitations with tools that will allow them to maintain
their personal and financial independence. Examples of the services
and supports that can be purchased include respite care, as well as
nursing support, assistive technology, home modifications, personal
assistance services, accessible transportation, and homemaker
services. The CLASS program becomes effective on January 1, 2011. The
Secretary must designate a benefit plan by October 1, 2012. Certain
adults who contribute to the program for at least 5 years may qualify
to receive a minimum average benefit of $50 a day, if they have a
qualifying level of disability or cognitive impairment.
[5] Medicaid is a joint federal-state program that finances health
care for certain categories of low-income adults and children. Social
Security Act § 1915(c)(4)(B), codified, as amended at 42 U.S.C. §
1396n(c)(4)(B). Older Americans Act §§ 371-74, codified, as amended,
at 42 U.S.C. §§ 3030s through 3030s-2.
[6] Pub. L. No. 109-442, 120 Stat. 3291.
[7] Eligible state agencies are those that administer a state's
program under the Older Americans Act of 1965; a state's program under
title XIX of the Social Security Act (Medicaid); or are designated by
a Governor to administer a state's LRCA program. Additionally, an
eligible state agency must work in collaboration with a public or
private non-profit statewide respite care coalition or organization,
and must be an Aging and Disability Resource Center, which provides
information and assistance to older adults and people with
disabilities about long-term care services and support. For the
purposes of the LRCA, the term 'state' refers to any of the 50 states,
the District of Columbia, the U.S. Virgin Islands, Puerto Rico, Guam,
American Samoa, and the Commonwealth of the Northern Mariana Islands.
[8] This announcement provided for up to $350,000 in federal funding
per year for 3 years, pending availability of funding. For each year
that funding is available to support this cooperative agreement, half
of the funding will be drawn from the LRCA funds, while the other half
will come from Older Americans Act funds.
[9] As discussed with the cognizant committees, due to the timing of
the grant funds awarded to date--with the first grants awarded in
September 2009--it was not possible to evaluate the effectiveness of
the funded programs by the mandated deadline.
[10] Of the $5 million allocated to date to implement the LRCA, AOA
has awarded $4,929,078 in grants and cooperative agreements, and
reserved $70,922 for evaluation and other administrative purposes.
[11] In 2009, 18 states applied for grants, and 15 states applied in
2010. States that received funding under the 2009 program announcement
were not eligible to apply for the 2010 grants.
[12] The respite care portion of the cooperative agreement was funded
through LRCA funds while the caregiver portion was funded through the
Older Americans Act.
[13] In addition to the $381,622 in LRCA funds which were provided via
subcontract to ARCH, FCA received $350,000 in Older Americans Act
funding ($175,000 in each of 2009 and 2010) for its portion of the
cooperative agreement. AOA awarded $350,000 in both 2009 and 2010
under this cooperative agreement, and also provided an additional
$31,622 in supplemental LRCA funds in 2009.
[End of section]
GAO's Mission:
The Government Accountability Office, the audit, evaluation and
investigative arm of Congress, exists to support Congress in meeting
its constitutional responsibilities and to help improve the performance
and accountability of the federal government for the American people.
GAO examines the use of public funds; evaluates federal programs and
policies; and provides analyses, recommendations, and other assistance
to help Congress make informed oversight, policy, and funding
decisions. GAO's commitment to good government is reflected in its core
values of accountability, integrity, and reliability.
Obtaining Copies of GAO Reports and Testimony:
The fastest and easiest way to obtain copies of GAO documents at no
cost is through GAO's Web site [hyperlink, http://www.gao.gov]. Each
weekday, GAO posts newly released reports, testimony, and
correspondence on its Web site. To have GAO e-mail you a list of newly
posted products every afternoon, go to [hyperlink, http://www.gao.gov]
and select "E-mail Updates."
Order by Phone:
The price of each GAO publication reflects GAO‘s actual cost of
production and distribution and depends on the number of pages in the
publication and whether the publication is printed in color or black and
white. Pricing and ordering information is posted on GAO‘s Web site,
[hyperlink, http://www.gao.gov/ordering.htm].
Place orders by calling (202) 512-6000, toll free (866) 801-7077, or
TDD (202) 512-2537.
Orders may be paid for using American Express, Discover Card,
MasterCard, Visa, check, or money order. Call for additional
information.
To Report Fraud, Waste, and Abuse in Federal Programs:
Contact:
Web site: [hyperlink, http://www.gao.gov/fraudnet/fraudnet.htm]:
E-mail: fraudnet@gao.gov:
Automated answering system: (800) 424-5454 or (202) 512-7470:
Congressional Relations:
Ralph Dawn, Managing Director, dawnr@gao.gov:
(202) 512-4400:
U.S. Government Accountability Office:
441 G Street NW, Room 7125:
Washington, D.C. 20548:
Public Affairs:
Chuck Young, Managing Director, youngc1@gao.gov:
(202) 512-4800:
U.S. Government Accountability Office:
441 G Street NW, Room 7149:
Washington, D.C. 20548:
