Across the nation at the federal, state and local levels, the importance of family caregivers are being acknowledged and honored this month. Family Caregiver Alliance refers to a caregiver as "anyone who provides assistance to someone else who is, in some degree, incapacitated and needs help: a husband who has suffered a stroke; a wife with Parkinson's disease; a mother-in-law with cancer; a grandfather with Alzheimer's disease?." Caregivers offer a range of services, including emotional and spiritual support, assistance with financial matters, transportation and home- and health-related services . . .(continued)

Many soldiers return home from deployment suffering from a Traumatic Brain Injury (TBI), Post Traumatic Stress Disorder (PTSD), and/or physical disabilities. These are health conditions that require care assistance from family members or other caregivers; who often report feeling depressed, angry, isolated and overwhelmed as a result of their caregiving situation. The Rosalynn Carter Institute for Caregiving offers a free in-home support program for these caregivers, Problem Solving Training for Family Caregivers of Returning Soldiers.

Professors at the University of Missouri are researching the effects of divorce on decision making around caregiving. Dr. Teresa Cooney and Dr. Christine Proulx, co-investigators on an exploratory study, will study women who are caregivers for their ex-husbands and the unique challenges these women face. Dr. Lawrence Ganong is studying decision-making related to divorce, remarriage, and care for older relatives. In a study with Dr. Marilyn Coleman . . .

The National Alliance for Caregiving and MetLife Foundation are pleased to announce that applications are being accepted for the 2012 Innovations in Caregiving, a new seed grant program that will provide startup funds of $10,000 to five non-profit organizations, agencies and universities for new caregiving education and support programs. . . .

Last month we were honored to learn that a group of 88 experts in a study supported by Philanthropedia (at Guidestar), a nonprofit organization that helps people make smarter donation choices, identified Family Caregiver Alliance (FCA) as one of 13 high-impact nonprofit organizations working in the field of aging in the United States.

Some of reviews experts had about FCA's impact were:

"FCA has raised awareness about the concerns of family caregiving at the local, state, and national levels. It has led the field in creating services, educating families, policymakers, professionals and others about the issue, articulating policy needs, and identifying the need for research, services, and public policy . . ." "They are a wonderful resource in terms of national statistics on caregiving and the impact of caregiving on families. They also fund and recognize unique caregiving support programs."

On October 26, 2011, Representative Jim Langevin (D-RI) and Representative Catherine McMorris Rodgers (R-WA) introduced the Lifespan Respite Reauthorization Act (HR 3266). The Act reauthorizes the Lifespan Respite Program at a funding level of $50 million over five years. . . . (continued)

ARCH National Lifespan Respite Conference Highlights

He discussed AoA-funded home and community-based long term services and supports designed to afford older people and their caregivers the ability to age with dignity and independence and reiterated AoA's support for the National Family Caregiver Support Program and the Lifespan Respite Program. At the opening session, the AZ Caregiver Coalition also revealed its new public awareness campaign to give "Caregivers a Hand." The audience attempted to set a world record for loudest applause ever recorded.

On the first day, plenary sessions afforded the opportunity to hear about important federal initiatives. The first panel discussion included representatives from the U.S.Department of Veterans Affairs who provided an overview of VA services and supports for veterans at home and their caregivers, including VA partnerships with AoA and ADRCs, Veteran Directed Services, innovative programs including volunteer respite as well as information on the new VA Caregiver Support Program and the Veteran-Community Partnership Initiative. From this session and a later workshop, Lifespan Respite grantees and state respite coalitions learned how they will be able to participate in these ventures, including possibilities for entering into provider agreements with the VA. The second plenary featured Greg Link from AoA and three Lifespan Respite grantees in Oklahoma, Massachusetts and South Carolina. Each of them discussed the unique aspects of their program's administration and design, as well as their accomplishments to date.

Over fifty workshops were offered featuring peer-reviewed proposals in the areas of innovative service delivery, diversity, and networking across all ages and conditions. Some of the workshop highlights included: respite in the LGBT community; adapting the National Family Caregiver Support Program into the culture of the Blackfeet people; increasing awareness of Alzheimer's in the Native American community; and respite provider training opportunities from Canada. Crisis nursery models; outcome-based evaluation in various respite services; models of volunteer-based respite for children; innovative ways to provide culturally conscious, seamless respite to kinship caregivers with scarce funding were topics also covered in workshops.

Lifespan Respite Grantees and state respite coalition representatives presented on a variety of topics:

• Think Group Process to define respite presented by the NY Lifespan Respite Grant Initiative in collaboration with the NY Caregiving and Respite Coalition;
• Two workshops on using data to successfully drive programs. The first was presented by the PA and TN respite coalitions, and the second by DE Lifespan Respite Network in partnership with CARE Delaware, Division of Services for Agingand Adults with Physical Disabilities;
• Respite relationship and partnership building in a joint presentation of the NC Lifespan Respite Project and the NC Respite Care Coalition;
• Partnering with your state's Title V Maternal and Child Health program from the CT Respite Coalition;
• Building state and local lifespan respite networks presented by the NH Lifespan Respite program;
• Voucher and Sharing the Care models from the AL Lifespan Respite Network;
• Accepting and achieving respite from the NV lifespan Respite program; and
• Lifespan Capering Network Training program developed in Wisconsin by a Lifespan Respite partner, Easter Seals of Wisconsin.

Several workshops provided opportunities for attendees to hear about national and state policy issues affecting family caregivers, the aging, and people with disabling and chronic conditions, and also to hone advocacy skills. In particular, national respite policy and reauthorization issues for Lifespan Respite in 2012 were discussed. A special workshop led by Suzanne Mintz from the National Family Caregiver Association provided attendees with new survey data from high burden and self-identified caregivers who claimed respite as a top unmet need.

Other keynotes included Holly and Jonathan Cottor, Co-Founders of Ryan House, a model facility that provides respite to families caring for children in hospice with palliative care needs. David W. Coon, PhD, Arizona State University ? presented an insightful and informative presentation on cultural diversity issues affecting caregiver assessment and provision of support services such as respite. Guy Mikkelsen, President and CEO, Foundation for Senior Living provided political commentary on the current economic and political situation in the nation.

Conference presentations will be available shortly on the ARCH website. Check there frequently.

State Respite Coalitions and Lifespan Respite Projects Pay Tribute to National Family Caregivers Month

The National Family Caregiver Association recently released new data as a result of surveying over 1500 members of their organization and found that among high-burdened self-identified family caregivers, respite was among the top concerns. When it comes to their own situation, caregivers are most concerned about taking care of their own personal health (84%), not having enough respite care (83%), and meeting monthly financial needs (77%). Recognizing that respite is among the most frequently requested supports, statewide events celebrated National Family Caregivers Month with a focus on respite and a few Governor's Proclamations did so as well. In Virginia, the Governor's Proclamation recognizing November 2011 as Family Caregivers Month in the state, incorporated recognition of Lifespan Respite and the Virginia Caregiver Coalition.

WHEREAS, the volunteer efforts of the Virginia Caregiver Coalition have provided education and supported public policies to address the needs of family caregivers for more than seven years while also working with the Virginia Department for the Aging, public, private, state and local partners through the Lifespan Respite Care Program to identify and expand respite resources and services, as well as advocate for families providing support to Virginians of all ages;

On November 1, 2011, preceding the ARCH National Lifespan Respite Conference, the Arizona Caregiver Coalition held a daylong Lifespan Respite Summit in Glendale, AZ to salute family caregivers. Approximately 75 family caregivers, community-based organizations, state organizations and state agencies came together to hear family caregiver stories, discuss supports for family caregivers, and plan how to strengthen the work of the AZ Caregiver coalition in support of the state's Lifespan Respite grant. Bonnie Danowski, a longtime family caregiver advocate, received the first, newly established "Bonnie Award" to honor the family caregiver advocate of the year. Bonnie, a family caregiver of her husband and son for more than thirty years, was instrumental in getting Arizona to pass Lifespan Respite legislation in 2007 and has also been very active in the ARCH National Respite Coalition, the National Multiple Sclerosis Society and the National Family Caregiver Association.

The Massachusetts Respite Coalition held a high-level event, "One Voice for Caregivers," celebrating Massachusetts Family Caregivers Month at the Boston State House on November 9, 2011. Almost 100 individuals representing state legislators, state agency secretaries and other agency heads, community based agencies and state groups such as the MS Society, Bay Path Elder Services, the Personal Care Attendant Quality Home Care Workforce Council, and Massachusetts Families Organizing for Children came together to discuss respite barriers and solutions in Massachusetts and highlighted the MA Lifespan Respite Program as the strategy to address the barriers. Five family caregivers were honored and they shared their compelling stories about respite. The MA Lifespan Respite Program is administered by the MA Department of Developmental Services in close partnership with the Executive Office of Elder Affairs.

The Alabama Lifespan Respite Resource Network and the Alabama Hospice Organization joined forces to hold a "Salute to Caregiving in Alabama" in the State Capitol on November 14. The Governor issued a proclamation declaring November Respite Awareness Month in Alabama. The State Medicaid Agency Director was the featured speaker. Reverend Tim Trimble talked about his journey as a caregiver before losing his son in 2009. From that loss, he and his wife have developed a faith based respite program that is becoming the model in the state.

On November 17, 2011, the New York State Caregiving and Respite Coalition (NYSCRC) in collaboration with the NY State Office on Aging, will be hosting the NYSCRC Inaugural Caregiving & Respite Conference at the Crowne Plaza, Albany. Presentation topics include how technology can assist the caregiver and keep loved ones engaged; future care planning services; needs of caregivers, community resources and strategies to cope with the complexities of caregiving; and the Livable Communities Caregiver Coaching Program. Jill Kagan will provide the keynote on the status and importance of Lifespan Respite. HERO Awards will be given to a Family Caregiver, a Professional Caregiver, a Caregiver Program, and a Respite Program. The afternoon will be focused on strengthening local caregiver coalitions.

For additional events, state Family Caregivers Month proclamations or for more information, please be in touch with State Respite Coalition contacts or State Lifespan Respite Grantee contacts.

New ARCH Publication

The guidebook is offered as a resource for programs, including State Lifespan Respite Programs that provide respite and are interested in developing and implementing participant-directed respite. Included are: overview materials that provide content information regarding participant direction, case-studies of two states that currently implement participant-directed respite programs using a voucher system, and resources for additional materials. Click here to download.