The Technical Assistance Centers are a partnership between
Family Caregiver Alliance and the ARCH National Respite Network and Resource Center.
The Centers provide technical assistance to the Aging and Lifespan Respite Networks on
caregiver and lifespan respite program development.
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Volume I, Number 2
March 30, 2010 |
Give Us Your Feedback
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You can further shape the content of the Newsletter and the activities of the Technical Assistance Centers by telling us about your areas of interest.
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Key Feature
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Greetings!
This month's Key Feature showcases for the Networks four exceptional programs that offer outstanding and innovative services to family caregivers: Next Step in Care: Family Caregivers and Health Care Professionals Working Together and the three recipients of the 2009 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. Read more...
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Upcoming Events
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To see the full description of the event, click on the date.
April
April 12: DCoE Hosts Webinars Specific to Caregivers of Service Members
April 22: Illinois Holds Annual Lifespan Respite Summit
April 22: Wisconsin Holds Annual Lifespan Respite Summit
April 22-23: Powerful Tools for Caregivers - Class Leader Training in Portland, Oregon
September
September 15-17:
2010 International Conference on Aging in the Americas
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Research & Practice
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New Online Resource from National Legal Resource Center Supported by AoA The new website offers professionals and advocates technical assistance, information, the option to request training on particular topics and networking opportunities. Read more...
Study: Caregiver Stress Linked to Risk of Stroke
An article in the February 2010 issue of the journal Stroke (Volume 41, Issue 2) revealed that high caregiving strain was associated with a 23% higher estimated stroke risk. Read more...
Study of Working Caregivers and Employer Health Care Costs
The report reveals that working caregivers, who tend to experience more health problems than non-caregivers, cost employers an estimated average of an additional 8% in health care expenses per year, or $13.4 billion annually. Read more...
Health Affairs Blog: Informal Caregiving by and for Older Adults
Written by Donna Wagner and Emiko Takagi, the blog compared data from the 2009 study on caregivers released by National Alliance for Caregiving and AARP with data from similar studies conducted in 1997 and 2004 to examine trends and key findings for caregivers of persons age 50 and older, with an emphasis on older caregivers. Read more...
Give Us Your Feedback
You can further shape the content of the Newsletter and the activities of the Technical Assistance Centers by telling us about your areas of interest. Please respond to our brief questionnaire here.
Innovations Clearinghouse on Family Caregiving
For more research based and research informed practices, visit FCA's Innovations Clearinghouse/Online Technical Assistance Center. Search the Clearinghouse to identify best practices, specific tools and policy & advocacy efforts; connect with fellow professionals from the aging networks; and request specialized technical assistance.
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Lifespan Respite News
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Getting to know the Lifespan Respite Partners
The new federal program announcement from the US Administration on Aging for the next round of state Lifespan Respite grantees is expected to be released soon. As the Networks prepare to apply for the new round of grants, this series of articles highlights the elements that made the 2009 state grantees successful and underscores the importance of partnerships in the Lifespan Respite Act. Read more...
Give ARCH your Feedback
We Need Your Input! The AoA funded Lifespan Respite Training and Technical Assistance Project of the ARCH National Respite Network and Resource Center would greatly appreciate your input in planning its training and TA activities. Please take a moment to respond to our online questionnaire by clicking here. The questionnaire can also be accessed here.
Listen to the Lifespan Respite Webinar
ARCH's Lifespan Respite 101 Webinar provides an introduction to Lifespan Respite, including Lifespan Respite legislation, the US Administration's (AoA) role in implementation, best practices in State Lifespan Respite Programs, and information to help you plan for a Lifespan Respite System in your state. To listen to the webinar, follow the link here. You can provide feedback about the Webinar here.
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Family Caregiver Alliance | National Center on Caregiving
180 Montgomery Street, Suite 1100
San Francisco, CA 94104
(800) 445-8106
www.caregiver.org
ARCH National Respite Network and Resource Center
4016 Oxford Street
Annandale, VA 22003
(703) 256-2084
www.archrespite.org
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This project is supported, in part, under a grant from the U.S. Department of Health and Human Services, Administration on Aging. Grantees undertaking projects under government sponsorship are encouraged to express freely their findings and conclusions. These contents, however, do not necessarily represent the policy of the U.S. Department of Health and Human Services and endorsement by the Federal Government should not be assumed.
?2010 Family Caregiver Alliance. All rights reserved.
The
National Center on Caregiving at Family Caregiver Alliance works to
advance the development of high-quality and cost-effective policies and
programs for caregivers in every state in the country. The National
Center is a central source of information and technical assistance on
family caregiving for policymakers, health and service providers,
program developers, funders, media and families. For questions or
further information about the National Center on Caregiving, visit the Family Caregiver Alliance website at www.caregiver.org.
To subscribe or unsubscribe to the Newsletter of the Technical Assistance Centers, use the following link: www.caregiver.org/caregiver/jsp/content_node.jsp?nodeid=2366
Or, contact Family Caregiver Alliance using our toll-free phone number: (800) 445-8106
Your
subscription information is used only for the purpose of improving this
service and tailoring it to the needs of its audience. Information
provided to us will not be shared with any other organization, agency,
corporation, entity or third party.
The Newsletter of the Technical Assistance Centers is a
publication of the National Center on Caregiving at Family Caregiver
Alliance, 180 Montgomery Street, Suite 1100, San Francisco, CA 94104.
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Key Feature
Greetings!
This month's Key Feature showcases for the Networks four exceptional programs that offer outstanding and
innovative services to family caregivers. Next Step in Care: Family Caregivers and Health Care Professionals
Working Together, is a multi-year, multi-dimensional campaign that is designed to change health care practice
so that health service providers routinely recognize, train, and support family caregivers, especially at times
of transitions in care. Carol Levine, Director of the Families and Health Care Project at the United
Hospital Fund in New York answers questions about the successes and challenges of the program and its
contributions to the practice of the aging network professionals. The other three programs are the recipients of
the 2009 Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards. They were honored
at a reception at the 2010 Aging in America conference in Chicago, IL last week. The Awards are funded by The
Rosalinde and Arthur Gilbert Foundation and organized by the National Center on Caregiving at Family Caregiver
Alliance.
Each of the programs offers a unique approach to the support of families in their caregiving role and responds
to diverse needs ranging from care transitions to aesthetic explorations.
Next Step in
Care: Family Caregivers and Health Care Professionals Working Together, by Carol Levine
2009
Rosalinde Gilbert Innovations in Alzheimer's Disease Caregiving Legacy Awards Recipients
Upcoming Events
National Respite Conference Call for Papers
Deadline: April 12, 2010
The Maryland Respite Care Coalition in partnership with the ARCH National Respite Network will host the
National Respite Conference October 24-27, 2010 at the Sheraton Baltimore City Center Hotel in Baltimore, MD.
The Call for Papers is now available and all workshop proposals are welcome. The deadline for paper submission
is April 12. The theme is RESPITE: Create It and is a call for advocates and professionals to showcase the
creative ways in which Respite Care is delivered throughout the nation.
This conference is intended for everyone who supports family members and caregivers of individuals across the
Lifespan. This is an especially exciting year as the new federally-funded Lifespan Respite States and the 20th
Anniversary of ARCH are celebrated.
The
Call for Papers can be accessed on the main ARCH
webpage.
Illinois Holds Annual Lifespan Respite Summit
April 22
Illinois will host a statewide summit on lifespan respite care on April 22. The key note speaker of this
event is Greg Link, Aging Services Program Specialist with the U.S. Administration on Aging. Break out session
speakers include Tamara Guy, Prevention Specialist for the Central Region, Denise McCaffrey, Director of
Prevention Awareness and Education for Prevent Child Abuse Illinois, and Sherri Schneider, founder of Family
Benefit Solutions, Inc.
To register for the summit, download the summit brochure here.
Wisconsin Holds Annual Lifespan Respite Summit
April 22
Wisconsin will host a Summit to plan for the future of respite care in Wisconsin and prepare to apply for a
Federal Lifespan Respite grant.
For more information and to download the registration form, visit the website of the Respite Care Association of Wisconsin.
Powerful Tools for Caregivers - Class Leader Training in Portland, Oregon
April 22 and 23
Legacy Caregiver Services will offer a Powerful Tools for Caregivers Class Leader Training on April
22nd and 23rd at the Governor Hotel in Portland, Oregon. This national program is open to
professionals from all states. There is a fee of $250.00 per attendee which includes:
- Scripted curriculum for all classes
- DVD, CD, and one copy of The Caregiver Helpbook
- Continental breakfast and lunch
The application deadline for the Class Leader Training is April 1st, 2010.
For more information and to register for the training contact:
Leslie Congleton, Program Coordinator
Powerful Tools for Caregivers
Legacy Caregiver Services
1015 NW 22nd Avenue
(503) 413-7032
Toll Free: (877) 701-4999
lconglet@lhs.org
2010 International Conference on Aging in the Americas
September 15-17
The 2010 International Conference on Aging in the Americas will be held September 15-17, 2010 at the
University of Texas at Austin. It is the fourth installment of a conference series where the objective is to
develop consensus on the best means of ensuring healthful aging of individuals of Mexican ancestry in the U.S.
The Conference will focus on issues of disability, caregiving, and long-term care policy.
For more information, visit the website of the University of Texas at Austin
Research and Practice
New Online Resource from National Legal Resource Center Supported by AoA
The National Legal Resource Center improves legal assistance and services available to older people by
supporting legal service providers, area agencies on aging, ADRCs and other organizations and attorneys serving
older adults. The new website offers professionals and advocates technical assistance, information, the option
to request training on particular topics and networking opportunities. Visit the National Legal Resource Center.
Study: Caregiver Stress Linked to Risk of Stroke
An article in the February 2010 issue of the journal Stroke (Volume 41, Issue 2) revealed that high caregiving
strain was associated with a 23% higher estimated stroke risk, and that this association was stronger in men,
particularly African American men with high caregiving strain. The researchers studied adults providing in-home
care to a disabled spouse in order to learn the association of caregiving strain with stroke and coronary heart
disease risk across race and sex. The study did not find an increased risk of heart disease linked to caregiver
strain. To read "Caregiving Strain and Estimated Risk for Stroke and Coronary Heart Disease Among Spouse
Caregivers" by Dr. William Haley and colleagues, visit: Stroke.
Study of Working Caregivers and Employer Health Care Costs
The MetLife Mature Market Institute with the National Alliance for Caregiving in conjunction with the
University of Pittsburgh Institute of Aging recently released a report, MetLife Study of Working Caregivers and
Employer Health Care Costs. The report reveals that working caregivers, who tend to experience more health
problems than non-caregivers, cost employers an estimated average of an additional 8% in health care expenses per
year, or $13.4 billion annually. The report also found that younger caregivers (ages 18 to 39) cost their
employers 11% more for health care than non-caregivers, while male caregivers cost an additional 18%. The report
suggest employers provide integrated wellness and eldercare programs for employees. For more information, visit:
MetLife Mature Market
Institute.
Health Affairs Blog: Informal Caregiving By and For Older Adults
A February 16, 2010 post to the Health Affairs Blog addressed "Informal Caregiving By and For Older Adults."
Written by Donna Wagner and Emiko Takagi, the blog compared data from the 2009 study on caregivers released by
National Alliance for Caregiving and AARP with data from similar studies conducted in 1997 and 2004 to examine
trends and key findings for caregivers of persons age 50 and older, with an emphasis on older caregivers. They
report that the percentage of caregivers caring for individuals over 85 years of age has increased across all
three surveys and that an increasing number of caregivers over 75 years old are caring for a friend (20%), a
parent (20%) or a sibling (18%), as opposed to a spouse. The burden of care is higher for older caregivers,
compared to younger caregivers, and older caregivers are the least likely to have another unpaid person helping
them. For more information, visit: Health Affairs Blog.
Give Us Your Feedback
You can further shape the content of the Newsletter and the activities of the Technical Assistance Centers by
telling us about your areas of interest. Please respond to our brief questionnaire here.
Innovations Clearinghouse on Family Caregiving
For more research based and research informed practices, visit FCA's Innovations
Clearinghouse/Online Technical Assistance Center.
Search
the Clearinghouse to identify best practices, specific tools and policy & advocacy efforts; connect
with fellow professionals from the aging networks; and
request specialized technical assistance.
Lifespan Respite News
Getting to Know the Lifespan Respite Partners
At the heart of the Lifespan Respite Care Act is successful collaboration across state agencies and local
providers: The Lifespan Respite law requires that the State Lead Agency work in concert with an Aging and
Disability Resource Center (ADRC), as well as a public, non-profit statewide respite coalition or state
respite organization to provide a coordinated system of community-based respite for all family caregivers
regardless of age or disability.
On September 24, 2009, the US Administration on Aging announced the first twelve state
recipients of the FY 2009 Lifespan Respite Grants. In this series of articles The Newsletter brings to the
Networks the profiles of the 2009 grantees along with their successes and challenges so far. As a prologue to
this series, we present the key terms contained in the Lifespan Respite Act of 2006 that define the collaborating
entities and what they must bring to the table:
State Lead Agency
The eligible State Lead Agency can be the state agency that administers the Older Americans Act, the state
agency that administers the Medicaid program, or an agency designated by the Governor. The state lead must work in concert with an Aging and Disability Resource Center, and must have a "memorandum of agreement regarding the joint responsibility for the eligible State agency's lifespan respite program between the eligible State agency
and a public or private nonprofit statewide respite coalition or organization." The very success of the program
will necessitate a strong leadership role on the part of the state agency, which in turn, must work in
collaboration with other designated stakeholders. Moreover, the state must demonstrate an ability to work with
other State and community-based agencies; an understanding of respite care and family caregiver issues across all
age groups, disabilities, and chronic conditions; and the capacity to ensure meaningful involvement of family
members, family caregivers, and care recipients.
Aging and Disability Resource Centers
An Aging and Disability Resource Center system is designed to serve as a comprehensive point of entry into the
long-term care services and supports system. This goal is in complete accord with the goal of Lifespan Respite.
The Aging and Disability Resource Center Program (ADRC) is a collaborative effort of the Administration on Aging (AoA) and the Centers for Medicare & Medicaid Services (CMS). AoA and CMS
originally funded 43 states and territories to develop ADRC systems between 2003-2005. In September 2009, $11
million in grants were awarded to 49 states and territories to implement or expand the Aging and Disability
Resource Center Program. Currently, ADRCs are at different phases of development, depending on when they received
their initial grant. Most ADRCs work with aging and physical disabilities with the ultimate goal of serving all
individuals in need of long-term care services. According to the Administration on Aging, "The ultimate goal of
the ADRCs is to serve all individuals with long-term care needs regardless of their age or disability."
The ADRCs address a range of issues related to long-term services and support, assisting individuals, families
and/or caregivers seeking assistance on behalf of their clients in finding the services and support that they
need. Such supports and services may include information and/or access to transportation, nutrition, home health
care, long-term care insurance, as well as supports, services, and training for family caregivers. ADRC systems
also serve as the entry point to publicly administered long-term supports including those funded under Medicaid,
the Older American Act, and state revenue programs.
According to the Aging and
Disability Resource Center Technical Assistance Exchange, "ADRCs are not necessarily located in a single
physical place and their functions are not necessarily carried out by a single agency. Rather, ADRCs involve
networks of state and local organizations working together in a coordinated manner to provide consumers with
integrated access points to all long-term services and supports. From the consumer's perspective, ADRCs help them
obtain the services and supports they need as if they were dealing with one organization. From a systems
perspective, this strategy can also help to break down barriers to community-based living by giving consumers of
all ages and income levels comprehensive information about the complete spectrum of long-term care options
available to them."
Generally, the roles of the ADRCs in the current Lifespan Respite grants include:
- Conducting outreach, public awareness and information dissemination
- Serving on State Advisory Teams or Task Forces
- Expanding Caregiver Training
- Embedding Respite Hotlines
- Serving in an advisory role
- Program Administration
- Collaborating on development of data bases for respite registries
For more information, visit the Aging and Disability Resource Center Technical Assistance Exchange.
State Respite Coalitions/Organizations
For purposes of the federal law, the required Memorandum of Agreement must involve a state respite coalition
or state respite organization, such as a state Lifespan Respite Program. According to the ARCH National Respite
Network, there are currently five State Lifespan Respite Programs established by state authorizing legislation
(AZ, NE, OR, TX and WI). The Oklahoma Human Services Department established a statewide respite voucher funding
system through the Oklahoma Respite Resource Network in 2000 without state authorizing legislation. The private
Alabama Lifespan Respite Network, originally started by a 45-member agency Task Force, received state funding
over time to support their Lifespan Respite infrastructure, and the Delaware Caregiver Coalition received private
foundation funding to establish the Delaware Lifespan Respite Network in 2009. Along with AL, the CT, IA, and TN
Coalitions received state and/or federal funding to actually administer respite vouchers to families, as well as
information and referral services across the age and disability spectrum, and thus operated similarly to a
single-point-of-entry Lifespan Respite program.
Prior to awarding of federal funds for Lifespan Respite in September 2009, ARCH recognized and included in its
Network Membership, twenty-three state respite coalitions (AL, AZ, CA, CO, CT, DE, GA, IA, IL, IN, KS, ME, MD,
NE, NJ, NY, NC, PA, RI, SC, TN, WI, WA). A few of these co-exist with and/or support or actually run an original
or evolving State Lifespan Respite program as described above (AL, AZ, CT, DE, IA, NE, TN, WI). The Oregon and
Oklahoma Lifespan Respite programs, which are members of the ARCH Network, do not have organized state respite
coalitions, but they do have other loosely knit groups that provide program oversight and advocacy. Some of the
new federally-funded grantees are working on building new state respite coalitions (NV, NH and TX), and ARCH
assisted an additional three states in March 2010 with on-site statewide Lifespan Respite Summits to jump start
the building of new state respite coalitions in MA, MO and MN.
The history, structure, membership, and major activities of each state respite coalition vary tremendously.
Some are independent non-profit 501(c)(3) organizations with bylaws and a Board of Directors; others are housed
and supported by state organizations such as Easter Seals or United Cerebral Palsy, which act as their fiscal
agents. About half of them have paid staff; the others are volunteer run with support from their employing
organizations. Most have broad and diverse memberships representing all ages and disabilities/chronic conditions
and include family caregivers, community and faith-based organizations, public state and local governmental
agencies and private state and local organizations. All of them provide important networking opportunities and
advocacy functions. Others are also engaged to varying degrees in fundraising, respite training and recruitment,
information and referral, public awareness and education, and even direct service delivery including respite
voucher administration. For more specific information on 18 of the coalitions or organizations, see ARCH State
Respite Coalitions and Lifespan Respite Programs: A Compendium of Fact Sheets.
In the new Lifespan Respite grantee states, respite coalitions are:
- Main portal for respite referrals through ADRCs or other entities
- Building/Strengthening respite data bases/registries
- Helping establish State Task Forces or Advisory Groups or Co-facilitating such groups
- Recruiting and Training Providers
- Establishing and Maintaining 800 numbers
- Developing public awareness or education materials
- Responsible for Media Relations
- Providing volunteer coordination of hotline
- Serving as forum for stakeholders
- Advocating for state funding
- Pulling together information on funding streams, respite barriers, identifying respite gaps
- Responsible for product distribution
If you are interested in building or strengthening a Respite Coalition in your state, please contact ARCH
Staff Maggie Edgar or Jill Kagan,
or download ARCH document Building
a State Respite Coalition: Where Do We Begin? Please also contact ARCH Representatives from State Respite
Coalitions, State Lifespan Respite Programs, and State Points of Contacts. Their contact information can be found
at http://chtop.org/ARCH/State-Respite-Coalitions.html.
Conclusion
The cornerstone of Lifespan Respite Programs is successful partnerships among the state lead agency, the
ADRCs, state respite coalitions/organizations, and other key players. Understanding the purpose, nature and
structure of the required partners will be critical to successful implementation of Lifespan Respite programs.
© 2010 Family Caregiver Alliance. All Rights
Reserved. No portion of this newsletter may be reproduced without the express permission of Family Caregiver
Alliance.
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