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entitled 'Respite Care: Grants and Cooperative Agreements Awarded to 
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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] 

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