January 5, 2012

For every $1,000 states spent on respite services in the previous 60 days, researchers at the University of Pennsylvania found an 8 percent drop in the odds of hospitalization.

This is the major finding from a new study published this month in the Archives of Pediatrics and Adolescent Medicine. The findings come from a study of records for over 28,000 kids with autism ages 5 to 21 who were enrolled in Medicaid in 2004.  The authors concluded: “Respite care is not universally available through Medicaid. It may represent a critical type of service for supporting families in addressing challenging child behaviors. States should increase the availability of respite care for Medicaid-enrolled children with ASDs”. To see an abstract of the study, click here.

The citation is:

David S. Mandell, ScD; Ming Xie, MS; Knashawn H. Morales, ScD; Lindsay Lawer, MA; Megan McCarthy, MA; Steven C. Marcus, PhD.  The Interplay of Outpatient Services and Psychiatric Hospitalization Among Medicaid-Enrolled Children With Autism Spectrum Disorders. Arch Pediatr Adolesc Med. 2012;166(1):68-73. doi:10.1001/archpediatrics.2011.714

The  Australian National Respite Association has invited us to share their 

Weekly Respite News Update. It contains summaries of relevant respite news from around the world gleaned through different electronic mediums on the internet. They will be sharing their content with us and we will pass it on to you. If you are interested in subscribing to this weekly publication, please respond to  This e-mail address is being protected from spambots. You need JavaScript enabled to view it

It might be helpful as you read the information to know that in Eurpoe, respite is known as "Short Breaks" and caregivers are known as "Carers."

Rep. Jim Langevin (D-RI) and Rep. Cathy McMorris Rodgers (R-WA) introduced the Lifespan Respite Care Reauthorization Act (HR 3266) today, October 26, 2011.   For more information, see Lifespan Respite Reauthorization Action Center.

Taking care of their personal health, lack of respite care and meeting monthly financial needs are the top concerns cited by 1,579 family caregivers, according to a survey by The National Family Caregivers Association (NFCA) and Allsup. Allsup is a nationwide provider of Social Security Disability Insurance (SSDI) representation and Medicare plan selection services.

The NFCA/Allsup Family Caregiver Survey was an online survey of 1,579 family caregiver members of National Family Caregivers Association who subscribe to the organization's E-letter. Surveys were completed in March and April of 2011. This is not a random sample of all caregivers. However, the findings provide important insights to the challenges and issues facing this group of higher burden family caregivers. Richard Day Research, an independent market research firm based in Evanston, Ill., was responsible for data management, analysis and reporting. A summary report, click here

The webinar was offered by the American Psychological Association Office on Aging, in partnership with the U.S. Administration on Aging on September 14, 2011. The webinar includes information about:  (1) the range of mental health issues that may occur in family caregivers; (2) strategies to identify and engage family caregivers experiencing strain (3) effective interventions effective in addressing caregiver stress and burden, and (4) the availability of resources for those who work with family caregivers including the American Psychological Association’s Family Caregiver Briefcase.

Presenters are: William E. Haley, PhD, Clinical Psychologist and Professor at the University of South Florida, School of Aging Studies; Barry J. Jacobs, PsyD, Clinical Psychologist, family therapist, author, educator and Director of Behavioral Sciences for the Crozer-Keystone Family Medicine Residency Program in Springfield, PA; and, Deborah A. DiGilio, MPH, Director, American Psychological Association Office on Aging and immediate past Chair of the National Coalition on Mental Health and Aging.  Greg Link, MA, Aging Services Program Specialist, U.S. Administration on Aging served as moderator. The webinar is available at:

For more information, see the AoA Press Release and Assistant Secretary Greenlee’s Disability Blog post today!  It was even mentioned in HHS Secretary Sebelius’s Press Release in observance of the Anniversary of the Americans with Disabilities Act.

These six grantees join the current 24 State Lifespan Respite Grantees.  For more information, see the Lifespan Respite Grantee page at ARCH. We expect AoA to announce the award of enhancement grants to a select number of the 24 state programs in the next few weeks.

This new AARP report updates national and individual state estimates of the economic value of family caregiving using the most current available data. In 2009, about 42.1 million family caregivers in the U.S. provided care to an adult with limitations in daily activities at any given point in time, and about 61.6 million provided care at some time during the year. The estimated economic value of their unpaid contributions was approximately $450 billion in 2009, up from an estimated $375 billion in 2007.  The report also explains the contributions of family caregivers, details the costs and consequences of providing family care, and provides recommendations for policies that better support caregivers.

The U.S. Administration on Aging announced the availability of approximately $2.25 million for implementation of the requirements of the Lifespan Respite Care Act of 2006. These projects will enable states to establish, enhance or expand Lifespan Respite Care systems, including new and planned emergency respite services, training and recruitment of respite workers and volunteers and assist caregivers with gaining access to needed respite services.

Under the 2011 "Lifespan Respite Care Program" announcement, AoA will award up to 12 grants to states with federal funding up to $200,000 each for three-year project periods. AoA will fund projects that propose to serve all eligible respite recipients, including family members, foster parents, or other adults providing unpaid care to adults needing care to meet basic daily needs or prevent injury and to children who require care beyond that required to meet their basic needs. Over the course of these projects, states will work to expand and enhance respite care services to family members; improve the statewide dissemination and coordination of respite care; and provide, supplement, or improve access and quality of respite care services to family caregivers, thereby reducing family caregiver strain.

This is a limited grant competition. Awards will only be made to eligible state agencies who: administer the states program under the Older Americans Act of 1965; or administer title XIX of the social Security Act; or are designated by the Governor of the state to administer the State’s programs under this title who are an aging and disability resource center working in collaboration with a state respite coalition or organization, AND who are not currently funded under the Lifespan Respite Care Program.

The closing date for applications for this announcement is Friday, May 20, 2011. The deadline for submission of a letter of intent to apply for funding is Monday, April 25, 2011. Letters should be submitted by facsimile or e-mail to Greg Link at This e-mail address is being protected from spambots. You need JavaScript enabled to view it or (202) 357-3558 (Fax). To learn more about this opportunity, please visit: http://www.aoa.gov/AoARoot/Grants/Funding/index.aspx

January 28, 2011

On February 1, 2011, the Department of Veterans Affairs (VA) is opening a toll-free National Caregiver Support Line housed at the Canandaigua VA Medical Center campus in Canandaigua, New York.  The support line will serve as a primary resource/referral center to assist caregivers, Veterans and others seeking caregiver information to help in the care of our Nation’s Veterans. Calls to The National Caregiver Support Line will be answered by VA employees who are licensed clinical social workers.

The Support Line will provide information on VA/ community caregiver support resources and “warm” referral to dedicated Caregiver Support Coordinators located in every VA Medical Center; emotional support for the caregiver will be an integral component of this service. The National Caregiver Support Line is also available to respond to inquiries about the caregiver benefits associated with Public Law 111-163, Caregivers and Veterans Omnibus Health Services Act of 2010. 

The National Caregiver Support Line will be open Monday through Friday 8:00 a.m. to 11:00 p.m. and Saturday 10:30 a.m. to 6:00 p.m. Eastern Time.  The National Caregiver Support Line Toll-Free number is 1-855-260-3274 (active Feb 1, 2011).

Wanted: A National Respite System

You may have missed it over the holidays, so I bring it to your attention again. A recent blog post in the New York Times, The New Old Age, entitled Wanted: A National Respite System (December 31, 2010) by Karen Stabiner, highlighted the federally-funded Lifespan Respite program, bringing it new national attention. Especially compelling comments, many of them sharing personal caregiving stories about the value of respite, accompany the blog post. The Times continues to welcome your comments to the post. The more comments that are received, the more likely it will be that the Times will continue to write about the need for respite.  If you have not done so already, please post a comment to at this site and help elevate respite as a national issue.

Family Caregiver Briefcase

The American Psychological Association’s

Family Caregiver Briefcase is now available at http://www.apa.org/pi/about/publications/caregivers/index.aspx.  An online resource for those who work with family caregivers, the Briefcase can help professionals recognize, anticipate, and reduce the stresses on family caregivers across the life span.  It provides guidance on how to assist caregivers through individual and organizational practice, research, teaching, and community service.  Segments of the briefcase are also useful for family caregivers. 

Additional components of the Family Caregiver Briefcase include:

• Caregiving facts and figures
• Strategies for reaching family caregivers
• Caregiving interventions
• Assessment tools
• Variations in practice for culturally diverse groups
• Practical aspects of providing services
• Research opportunities and considerations
• Teaching about Caregiving
• Advocacy on behalf of family caregivers
• Resources for diverse populations and age groups

For  questions or additional information contact:  Deborah DiGilio, APA staff liaison to the 2010 APA Presidential Task Force on Caregivers and Director of the APA Office on Aging  at: This e-mail address is being protected from spambots. You need JavaScript enabled to view it

NPR Series on Long-term Care

NPR is doing a series on long-term care, Home or Nursing Home: America's Empty Promise to Give Elderly, Disabled a Choice.  Today’s story, A New Nursing Home Population: the Young, focused on the growth in the percentage of individuals ages 31-64 living in nursing homes over the last decade. The number of young adults moving into nursing homes is on the rise and advocates say the reason could be a lack of resources available for people to stay in the community.  Check out this story and the whole series, which explores this issues across the lifespan, at NPR.

August 6, 2010

Guidance for Health Care Reform/ Medicaid

On August 6, The Center for Medicaid, CHIP and Survey & Certification released a letter in their series of guidance on implementation of the Affordable Care Act of 2010.  This letter provides information about several changes to Section 1915(i) of the Social Security Act as a result of the passage of the Affordable Care Act.  These changes, which become effective October 1, 2010, include revised and new options for offering home and community-based services (HCBS) through the Medicaid State plan.  Among other things, section 1915(i) removes the requirement that individuals meet an institutional level of care in order to qualify for HCBS through Medicaid.  Section 1915(i) provides States an opportunity to offer services and supports before individuals need institutional care, and also provides a mechanism to provide State plan HCBS to individuals with mental health and substance use disorders.   In order to promote State utilization of 1915(i), the Affordable Care Act includes changes that enable states to target HCBS to particular groups of people, to make HCBS accessible to more individuals, and to ensure that individuals receive high quality care.  See the letter at:
http://www.nacdd.org/documents/
Improved%20Access%20to%20HCBS%20SMD%20letter%20Final%208-6-10.pdf