March 2008 - National Alliance for Caregiving by lonyoo


									                          The Caregiving Exchange
                      Supporting Caregiving Coalitions Across the US
                                                                               March 2008

     In This Issue                         News from the Alliance
                                           The Caregivers are Coming!
    News from the Alliance
    Coalition News                        The Second National Conference for
    Conference Information                Caregiving Coalitions is just weeks away! We
    CMS Caregiving Coalitions             are excited to be hosting different caregiving
     Conference Call
    Reports and Publications
                                           coalition members and others interested in
    Resources                             caregiving this year. We have provided
                                           information about the upcoming conference in
                                           the Conference Information Section of this

The Conference Information Section provides information on the conference agenda as
well as information on how to schedule an appointment to meet with your Senators and/or
Representative in Congress.

Be sure to check out the Reports and Publications Section for information and links to
two important publications. The first, by the Kaiser Commission on Medicaid and the
Uninsured, gives an overview of new Medicaid regulations and how they may affect
consumers. The second, by the Urban Institute, looks at universal health insurance
proposals, including information on individual mandates. This has been, and will continue
to be, a hot-button issue in the 2008 Presidential Campaigns.

Our Conference Call/Webinars Section provides information on three different
conference calls or webinars focusing on different aspects of caregiving, such as rural
caregiving and Medicare as it relates to caregiving. Our Resources Section provides a
brief overview of the Well Spouse Association, a group that works to provide supports to
spousal caregivers as well as information on a new website for family caregivers,
eXtension. Finally, we have provided a link to information on Congressional voting
records from the American Association of University Women.

We here at the Alliance are working hard to assure that attendees receive valuable
information and training on issues important to caregivers and those that support them.

Gail Gibson Hunt
CEO and President
National Alliance for Caregiving

The Caregiving Exchange                                                         February 2008

Coalition News
The Alliance is pleased to report that 74 representatives from caregiving coalitions and others interested
in caregiving have already signed up to participate in the Second National Conference for Caregiving
Coalitions. The meeting was in such high demand that the Alliance decided to open up the event to an
additional 25 participants. Twenty-four states and the District of Columbia will be represented on March
26th, 2008.

There will be eight representatives from California, seven from New York and Wisconsin, five from Ohio
and Virginia, four from Arizona and New Jersey, three from Hawaii, South Dakota and Texas, two from
D.C., Florida, Illinois, Kansas, Maryland, Minnesota, North Carolina, Nebraska, and Pennsylvania, and
one from Colorado, Louisiana, Michigan, New Hampshire, New Mexico and Utah. The Alliance thanks
the Retirement Research Foundation and the Jacob and Valeria Langeloth Foundation, who provided
fifteen scholarships to caregiving coalitions for participation in this event.

Second National Conference for Caregiving Coalitions
State and local caregiving coalition members are invited to attend the Second National Conference for
Caregiving Coalitions on Wednesday, March 26 from 8:00AM-3PM, followed by Congressional visits.
The event will be held at the Marriott Wardman Park Hotel in Washington, D.C., as a pre-conference to
the NCOA-ASA Conference. The caregiving coalition pre-conference is sponsored by the National
Alliance for Caregiving, with funding for the conference provided by generous support from the
Retirement Research Foundation and the Jacob and Valeria Langeloth Foundation. The conference will
provide an opportunity for members of caregiving coalitions to: develop strategies for sustainability,
fundraising and evaluation; receive technical assistance from seasoned coalition leaders; share best
practices and lesson learned; and participate in the launch of the Coalitions Network Advocacy

Scheduled presenters include:
Mary Brintall-Peterson, PhD, Program Specialist in Aging, University of Wisconsin Extension; Carol
DeGraw, MSW, LCSW, Community Impact Manager, United Way of Morris County; Brian Duke, MHA,
MBE, Executive Director, New Jersey Foundation for Aging; Moira Fordyce, MB, ChB, MD, FRCP,
Clinical Professor of Medicine, Stanford University School of Medicine; Rev. Gregory Johnson, Director,
Care for the Family Caregiving Program, HIP Health Plan of New York; and James O'Neal, Associate
Director of Marketing, VNS, Choice, Visiting Nurse Services of New York. We are also pleased to have
Stephen McConnell, Vice President of Advocacy, Public Policy, Alzheimer’s Association, providing our
keynote speech during lunch.

To register, go to:

Scheduling Your Congressional Visits
The Second National Conference for Caregiving Coalitions is just one month away. If you have not yet
made your appointments with your Members of Congress, now is the time to contact them!

We recommend that you contact both of your U.S. Senators and your U.S. Representative. To find the
names and contact information for your state’s two Senators, visit:

The Caregiving Exchange                                                                      March 2008
                                                                                                             3 To find the name and contact
information for your U.S. Representative, visit:

To make an appointment, most legislative offices require a written request. A sample request can be
found as a last page to this newsletter. You will then need to follow up this written request with a phone
call. Try to set the appointment approximately 4:00pm on March 26. This will give you the opportunity
to attend all of our conference programs, as well as allow for afternoon appointments with legislative
offices. When following up on this request, it is important to include a few key talking points with the
scheduler. Your discussion might go something like this:

        “My name is Maureen Smith, and I am a constituent of Rep./Sen. Miller. I am following up on an
        appointment request I sent to your office on (date). I am going to be in town on (date), and would
        like the opportunity to meet with Rep./Sen. Miller that afternoon to discuss Lifespan Respite and
        other supports for caregivers in her district. If she is not available, I would be happy to meet with
        her Health Aide.”

Once an appointment time and location have been agreed upon, it is important for you to be prepared
when you arrive at the meeting. The Alliance will have materials available for you to use during your
appointments with Members of Congress and/or their aides. If you would like to coordinate with others
from your state that may also be attending the pre-conference, please contact Suzanne Stack:

Conference Calls/Webinars
The satellite broadcast, "Supporting Rural Family Caregivers" will feature
rural family caregivers and experts who have worked and conducted research in the rural family caregiver
arena. They will discuss the issues confronting rural family caregivers, and present possible interventions
to address these challenges. The broadcast is presented by the DHHS New Freedom Initiative NFI
Subcommittee on Caregiving in partnership with the Centers for Medicare & Medicaid Services.
The event will take place on Wednesday, March 19 from 1:00-3:30PM Eastern. To register and to find
more information on the broadcast and where it can be viewed, please go to:

The Medicare Rights Center is hosting a free educational web seminar for caregivers. Many adult
children, spouses and friends care for loved ones with Medicare. But often caregivers are unaware of the
Medicare-covered services available to assist their loved ones, or don’t know the best way to navigate a
sometimes complicated health insurance system. The web seminar will cover how to get care for a loved
with Medicare, what services Medicare will/won’t cover, caregiver rights and tips on how caregivers can
take care of themselves. The event will take place on Thursday, April 10 at 1:00 PM Eastern Time.
Register online at to reserve your spot. If you are unable to
attend, a recording of the presentation will be posted the following day.

CMS Caregiving Coalitions Conference Call
The next CMS Caregiving Coalitions Conference Call is scheduled for Wednesday, April 16 th at 1:00pm
Eastern Time. Information about the agenda and featured speaker will be shared via the caregiving
coalition email list. If you are not on that list and would like to be added, please email your contact
information to Suzanne Stack at

The Caregiving Exchange                                                                         March 2008

Reports and Publications
Kaiser Commission on Medicaid and the Uninsured
Medicaid: Overview and Impact of New Regulations
Rudowitz, Robin
Published: January 2008
Focuses on six new rules aimed at cutting federal spending that could reduce services for vulnerable
beneficiaries, slash reimbursement for safety-net providers, and affect states' budgets. Explains current
policy, the proposed changes, and their impact.

Urban Institute
Do Individual Mandates Matter?
Blumberg, Linda J.; John Holahan
Published: January 2008
Outlines the reasons why achieving universal health insurance coverage requires an individual mandate,
and why individual mandate proposals must address the affordability of adequate coverage and develop
fair and effective ways to enforce the mandate.

Wondering what other caregiving organizations do for caregivers? Headquartered in Freehold, NJ, the
Well Spouse Association is a national, not for profit membership organization which gives support to
wives, husbands, and partners of the chronically ill and/or disabled. Well Spouse support groups meet
monthly where members can share their thoughts and feelings openly with others facing similar
circumstances in a supportive, non-judgmental environment. These support groups are an excellent source
for information on a wide-range of practical issues facing spousal caregivers. The support groups exist or
are being formed in many areas of the country. To find out more about the types of programs they
provide for caregivers, go to

On Thursday, February 21, the Family Caregiving eXtension launched a new website that provides
valuable information for caregivers. eXtension is an interactive learning environment delivering the best,
most researched knowledge from the smartest land-grant university minds across America. eXtension
connects knowledge consumers with knowledge providers - experts who know their subject matter inside
out. One of the resource areas (also known as Communities of Practice) is family caregiving. The family
caregiving section includes articles, calendars and events, questions and answers, and links to resources.
To view the website, visit:

The American Association of University Women (AAUW) recently released its Congressional Voting
Record for the 110th Congress, First Session: This resource provides
critical information about how their members of Congress voted on equity issues affecting women in

The Caregiving Exchange                                                                        March 2008

                                  (sample scheduling request)

The Honorable Janice Jones
0000 Russell House Office Building
Washington, DC 20515
Attn: (scheduler)

Dear Representative Jones:

On behalf of the National Alliance for Caregiving (Alliance), I am writing to request an
opportunity to meet with you to discuss funding for caregiver support programs. Alliance
volunteers from your constituency will be in Washington D.C. on Wednesday, March 26,
and would greatly appreciate the opportunity to meet with you at that time.

As you know, an estimated 44.4 million family caregivers provide 80% of the long-term
care in this country for free. One study estimated the value of unpaid caregivers at $350
billion in 2006. Family and formal caregivers provide a valuable service to our
community members but cannot continue doing what they do without proper supports.

Last year, Congress passed the Lifespan Respite Act. However, funding for this important
legislation was not secured. This year, we ask that you support funding for the Lifespan
Respite Act in the fully authorized amount of $53 million. We also request doubling the
current funding level for the Family Caregiver Support Program, bringing the amount from
$156 million in 2007 to $312 million in 2009. Securing funding that enables family
caregivers to keep people in their homes will result in significant cost-savings to Medicaid
and other government programs.

Of course we understand that you have a very busy schedule, and would not mind meeting
with a member of your staff if you are unavailable. If possible, I would like to meet with
you at 4PM on March 26. I can be reached at 555-555-5555, or by e-mail at (your email
address). I can be reached at 555-555-5555, or by e-mail at (your email address).

Thank you very much for your consideration of this request. I look forward to talking to
you further about these concerns.


(Your Name)
(Your Street Address)
(City) (State) (Zip Code)

The Caregiving Exchange                                                         March 2008

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