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"We
envision an America where respite is readily available and
easily accessible to all caregivers."
Goals
of the
Lifespan Respite
Task Force
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- Universal
availability of respite for all who seek it
- Widespread
acceptance that it is all right to ask for and receive
help
- Heightened
awareness of caregiver needs
- Easy
access to an array of affordable respite services
- Flexibility
to meet diverse needs
- Systems
that meet the comprehensive needs of caregivers
to locate, train, and pay for respite
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Respite
care, which includes crisis care, provides temporary
relief for caregivers from the ongoing responsibility
of caring for an individual of any age with special
needs, or who may be at risk of abuse or neglect. |
Why
is respite so important?
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Respite
is often the most frequently requested and needed family
support service. Respite is first and foremost a preventive
strategy that strengthens families, protects family
health and well being, and allows individuals to remain
in their own home. Respite has been shown to prevent
or delay more costly out-of-home placements, reduce
the risk of abuse or neglect, and to help keep all family
members safe and stable. |
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1)
Respite is available to all families and caregivers.
Respite should be available to any caregiver providing
ongoing care for individuals of any age with any physical
or mental disability, chronic or terminal illness, or
other special need, or at risk of abuse or neglect,
regardless of family income, race, gender or situation.
2) Respite is accessible. Respite should be
easily accessible by caregivers when, how, and where
it is needed.
3) Respite is affordable. Sufficient resources
should be available to ensure that all caregivers have
access to high quality respite services.
4) Planned and emergency respite is available.
Respite is also an important component of a continuum
of comprehensive family support services available to
caregivers not only on a planned basis, but also in
emergency situations.
5) Families have an array of options and can choose
respite services that meet their unique needs. A
wide array of respite options, including in-home and
out-of-home, and a diverse pool of providers that meet
families’ needs should be available. Culturally competent
providers should be available to all families. Caregivers
should be free to choose their respite providers.
6) Respite systems address capacity issues and ensure
enough providers are available. The current supply
of individuals available to provide respite is inadequate
in many communities, especially respite for individuals
with mental illness or severe medical conditions, or
in some rural and urban areas.
7) Respite systems ensure caregivers are aware of respite
and know how to access respite. Adequate outreach
and support services should be made available to increase
caregiver awareness about available respite options
and community resources.
8) Respite systems empower caregivers to select,
hire and train competent providers. A mechanism
should be in place to support and assist caregivers
in the process of selecting providers to meet their
individual needs.
9) Respite systems are made up of agencies and individuals
committed to addressing gaps and barriers in services.
Respite systems should include families, stakeholders,
agencies and community-based partners.
10) Respite is high quality. All available and
accessible respite options should be of high quality
and ensure the safety of the individual being cared
for. Services are evaluated and feedback from families
drives program improvements. |
Supplementary
Documents
Senator Warner's Statement on Passage of the Lifespan Respite
Bill
Senator Clinton's Statement on Passage of the Lifespan Respite
Bill
Senate Committee Approves Clinton Legislation to Provide Relief
to Family Caregivers
Senator Clinton's Congressional
Record Statement on the Introduction of the Lifespan Respite
Care Act of 2003.
Congressman Langevin's Congressional
Record Statement on the Introduction of HR 1083.
Press
release from the National Respite Coalition on the Lifespan
Respite Care Act of 2003
Lifespan
Respite Factsheet (html)
Lifespan Respite
Factsheet (PDF)
State Lifespan Respite Legislation, a Side by Side Comparison
(PDF)
Task
Force Vision Statement and Endorsement Form (PDF)
Promising
Practices: Community-based Long-term Care (PDF) from
the National Conference of State Legislatures web site
Testimony
Prepared by Jill Kagan, Chair, National Respite Coalition,
for the record of the hearing on Women’s Health held by the
Subcommittee on Public Health Senate Committee on Health,
Education, Labor and Pensions, April 25, 2002 (PDF)
Statement
of Jill Kagan, Chair of
the National Respite Coalition, to Working Group 3: Families
Caring for Seniors, at Family Re-Union 9: Families
and Seniors, Across the Generations, November 20, 2000,
Nashville, TN (PDF).
Jan
Moss, Family Caregiver from Oklahoma City, testifies in support
of Lifespan Respite Care Act
(to
view testimony PDF)
The Senate
Finance Committee held a hearing April 7, 2004, on "Strategies
to Improve Access to Medicaid Home and Community Based Services."
The thrust of the hearing was to hear testimony on the President's
New Freedom Initiative Medicaid Demonstrations proposal, including
respite demos for adults and children. Testimony was also
provided on the MICASSA bill -- "Medicaid Community Based
Attendant Services and Support Act" that would require
states to cover community services under their Medicaid program.
We were
asked by Chairman Grassley to provide a family caregiver to
testify in support of the NFI respite demos, but also to say
they won't go far enough and that enactment of the Lifespan
Respite Care Act is necessary also. Jan Moss, a family caregiver
of two adult children with developmental disabilities from
Oklahoma City, Oklahoma, provided that testimony and shared
information about the Oklahoma Lifespan Respite program.
To
view and download Jan's testimony and to view the hearing
in its entirety, see the Senate Finance Committee web page
at http://finance.senate.gov/sitepages/hearings.htm
Chairman
Grassley announced that Senator Clinton had submitted a statement
in support of the Lifespan Respite Care Initiative.
_____________________________________
Lifespan Respite Task Force Meeting Update
July 19, 2004
Thanks to all of you who turned out for the most recent Lifespan Respite Task Force meeting on July 19.
-- New Lifespan Respite Act Cosponsors
-- August Message for Congress -- New Alert Attached for Distribution and Capwiz sites
-- Hill Activity Update
-- National Organization Letters to Chairman Barton
-- Important News!! Michigan Enacts Lifespan Respite Program!!
-- National Governor's Association Issue Brief Identifies Lifespan Respite
-- Last Acts Partnership Legislation
-- Next Meeting: August 9, 2004, 10:00 am (location to be confirmed)
New Cosponsors of Lifespan Respite Care Act
There are currently 132 cosponsors of the Lifespan Respite Care Act (HR 1083). For the latest list of cosponsors by state or party affiliation, please visit the Capwiz web site of one of our Lifespan Respite Task Force partners, the Association of University Centers on Disabilities http://capwiz.com/aauap/issues/bills/?bill=1604376
August Message for Congress --- New Alert Attached
The importance of pursuing multiple strategies for bill action was discussed at length, including educating members about the "Ronald Reagan Alzheimer's Breakthrough Act" (S. 2533, HR 4595) and seeking cosponsorship for these bills. The Senate Reagan bill currently has 62 cosponsors. As you know, the Senate-passed Lifespan Respite Care Act was included in its entirety in the House and Senate Ronald Reagan bills. The group agreed that seeking cosponsors for the Ronald Reagan Act would be supported by the Task Force, but advocating for passage of the free standing Lifespan Respite Care Act would still be a priority.
A letter of support was sent from member organizations of the Lifespan Respite Task Force to the Senate and House cosponsors of the "Ronald Reagan Alzheimer's Breakthrough Act." The letter is attached for your information. If you would still like to be added as a supporting organization, please let me know.
A new alert for the August recess and proposed message is attached. Please feel free to adapt it to reflect your individual organization's position on the Ronald Reagan bill, post it on your Capwiz sites, and circulate widely. Urge your membership to contact the White House, too, to support the Lifespan Respite Care Act.
Hill Activity Update
Last week, Hill visits or contacts were made with offices of Reps. Lee Terry, Rep. Heather Wilson, Rep. Fred Upton and Rep. Nathan Deal, current Energy and Commerce Committee members who are already cosponsors of the Lifespan Respite Care Act, to reinforce their support for the bill and request their assistance in moving it. All agreed to help support our efforts.
In the very near future, we expect Rep. Greenwood's office to set up a meeting with Administration to resolve their concerns and then organize a bipartisan letter from Energy and Commerce members to Chairman Barton urging action on the bill. If requested, continued action may be needed from Task Force members to urge member signons to that letter. I will keep you posted.
National Organization Letters
Letters from individual national organizations to Chairman Barton urging action on HR 1083 are still vitally necessary. Thanks to all of you who have already sent such letters. If your national organization has not yet sent a letter it is not too late. Please fax to Chairman Barton, House Energy and Commerce Committee, Attn: Cheryl Jaeger, 202-225-1919. A letter with 22 national organization signons was sent from CCD to Chairman Barton. This letter is attached and will be posted on the Lifespan Respite TF web page soon.
Michigan Passes Lifespan Respite Legislation
Michigan joins our model Lifespan respite states in enacting Lifespan Respite legislation!!! Congratulations Michigan Respite Advocates!!!
HB 4476 Lifespan Respite Care Act: Creates the Michigan lifespan respite services resource network within the Department of Community Health with the intent of developing and encouraging the statewide coordination of respite care services. The resource network would develop and distribute information on respite services, coordinate the provision of respite services, promote a statewide network of community respite services, and establish a website and toll free phone number for information on respite services. Passed House February 2004. Passed Senate June 2004. Governor signed into effect July 1, 2004
For a copy of the public law and fiscal and legislative analyses visit: http://www.michiganlegislature.org/mileg.asp?page=getObject&objName=2003-HB-4476
National Governor's Association Issue Brief Identifies Lifespan Respite
An issue brief "State Support for Family Caregivers and Paid Home-Care Workers" was recently released by the National Governor's Association Center for Best Practices Aging Initiative and identifies Lifespan Respite as a strategy for supporting family caregivers. The report can be downloaded at http://www.subnet.nga.org/ci/assets/4-Caregivers.pdf
Last Acts Partnership News and Legislation
David Lee of Last Acts Partnership shared information with the Task Force about the following three issues regarding end-of-life care. Fact sheets regarding each are attached:
1) A Call for a Revitalized U.S. National Mortality Followback Survey
2) S. 2545 - Advance Directives Improvement and Education Act -- introduced on June 17 by Senators Bill Nelson (Florida) and Jay Rockefeller (West Virginia).
3) S.RES. 391 - Declaration of the second week of December as Conversations Before the Crisis Week.
For more information, please contact Ellen Witman, MA, Director of Advocacy (202.296.8071, x104, ewitman@lastactspartnership.org) or David Lee, MPA, Director of Program Policy (202.296.8071, x120, dlee@lastactspartnership.org).
Next Meeting
The next meeting will be held on Monday, August 9 at 10:00 am. Tentative location, House of Representatives office Building (Room TBA).
Please feel free to contact me if you have any questions or need more information.
The ARCH National Respite Conference
Atlantic City, NJ
September 8-10, 2004
Register early!
Call (732) 528-8080 or visit
www.archrespite.org or www.familysupportnj.com
Jill Kagan, MPH
National Respite Coalition
Policy Division of the ARCH National Respite Network
4016 Oxford St.
Annandale, VA 22003
703-256-9578
www.archrespite.org/nrc.htm
www.archrespite.org/tforce.htm
"Ronald Reagan Alzheimer's Breakthrough Act of 2004" (S. 2533; HR 4595) Click here to see the pdf file (S.2533 text)
On June 16, 2004, the "Ronald Reagan Alzheimer's Breakthrough Act of 2004" was introduced in both the House and Senate. The Senate lead cosponsors are Senator Barbara Mikulski (D-MD) and Sen. Kit Bond (R-MO) whose intentions are to create a "living memorial" to President Reagan who suffered from Alzheimer's disease. They are joined by 30 bipartisan Senate cosponsors, including our Lifespan Respite champions, Sen. Warner and Sen. Clinton. The House lead cosponsors are Rep. Edward Markey (D-MA) and Rep. Chris Smith (R-NJ). For more information, please visit the Lifespan Respite TF web page at www.archrespite.org/tforce.htm
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