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Advocacy and Public Policy
Federal Budget filled with Alzheimer's Cuts
Public Policy Forum 2007
Get Involved
What is Advocacy?
How to Contact Your Elected Officials
2007 Public Policy Platform
Training Legislation
Ronald Reagan Act
President Bush has submitted his budget request for fiscal year 2007 to Congress. Congrss failed to pass the budget in December 2006, and will once again take up the process in January 2007. Unfortunately, the news is not good for individuals with Alzheimer's disease. The budget proposes to decrease Alzheimer research funding and eliminate funding for several key Alzheimer programs. These cuts come just two months after the President signed a bill to decrease funding for the National Institutes of Health (NIH) in FY06 - by approximately $70 million. This was the first time NIH funding had been cut in 36 years, and only the third time in its history.
Other Alzheimer Program Cuts
Several Alzheimer programs are eliminated in the President's budget proposal:
Alzheimer's Brain Health Project at Centers for Disease Control (CDC) - no funding was included for this program, which was included in the budget last year at $1.6 million.
Alzheimer's Disease Demonstration Grants to the States (ADDGS) Program - the budget proposes to eliminate continued support for the ADDGS program, currently funded at $12 million. This program expands the availability of diagnostic and support services for persons with Alzheimer's disease and improves the responsiveness of the home and community based care system to persons with dementia.
Contact Center - no funding was included for the Alzheimer's Association national Contact Center
Safe Return - no funding was included for the Alzheimer's Association's Safe Return program.
Medicare
The President's budget calls for substantial cuts in the Medicare program in an attempt to rein in growing costs. This includes a zero percent payment increase for skilled nursing facilities, home health agencies and inpatient rehabilitation facilities. The proposal also decreases payments to hospitals, hospice and ambulance services. These are all essential services that Alzheimer families rely upon to provide ongoing health services.
Medicaid
In good news for Alzheimer advocates, the President's budget proposal does not include any further cuts to Medicaid programs and services. The budget proposal is the first step in the congressional budget process. The next step is for Congress to debate the 'budget resolution', which sets federal budget priorities and spending limits.
Every Voice Counts!
Contact your Congressional Representatives, tell your friends and fmily to take action as well. Phone calls, letters and emails really can make a difference. Click here for information on how to contact your elected officials.
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New Respite Care Program to Help Caregivers
On December 8th, Congress passed legislation that establishes new respite care programs to help families who are taking care of loved ones with serious illnesses. The Lifespan Respite Care Act (s 1283 / HR 3248) provides grants to state agencies, public and private non-profit groups and other organizations to make resptie care available and accessible to family caregivers, regardless of age, condition, or special needs. Individuals with Alzheimer's disease, including those with early-onset, would be eligible for services. The new programs will not begin until Congress decides on how much funding to provide, and President Bush is expected to sign the Lifespan Respite Care Act soon. The WV Chapter is already working on several ways to help access these funds to help Alzheimer's families in our service area.
Public Policy Forum 2007
Join us in Washington, D.C. March 18-20, 2007 for the Alzheimer's Association 19th Annual Public Policy Forum. The Forum is an excellent way to let your elected representatives in Congress know the needs of Alzheimer's families. Click here for more information and to make reservations.
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Get Involved
The Alzheimer's Association counts on thousands of volunteers nationwide.
Please join us in helping achieve our vision of creating a world
without Alzheimer's disease while optimizing quality of life for
people who are affected by Alzheimer's. You really can make a difference.
- Help shape laws by communicating Association positions to legislators
and educating them about Alzheimer-related issues.
- If you are a caregiver, who better than you to illustrate the
need for home- and community-based services?
- Who better than you to explain the need for adequate training
for health care professionals or law enforcement personnel?
- We invite you to participate in our advocacy efforts. To give
you the support you need to join our cause, we will provide information
and tools.
If you are interested in learning about becoming an advocate, call Sandy Kerns at 1-800-491-2717, or e-mail sandy.kerns@alz.org
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What is advocacy?
The whole idea of advocacy, giving voice to the needs and concerns
of those who may not be able to speak for themselves, shouldn't
seem like a new idea to those who have been caring for someone with
Alzheimer's. Any caregiver who has struggled to find good care for
their loved one or who has told a nursing home or day care how to
better care for their loved one, has been an advocate. Advocacy
whether with state legislators , Congress, or other public entities,
requires passion. And you who care for someone with Alzheimer's
disease certainly have passion.
Public policy advocacy is one of our most effective tools as we
strive to find a cure and to provide help to those dealing with
Alzheimer's in their lives right now. Attending our local town meetings,
writing your legislator or congressional representative, attending
the Alzheimer's Association Public
Policy Forum held each spring in Washington, D.C., or simply
speaking out about this disease that no one likes to talk about,
will help capture the attention of decision makers and the media.
Working together, our passion and expertise will make a difference.
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2007 Policy Platform
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Federal Initiatives
The Alzheimer's Association, WV Chapter will actively support the Alzheimer’s Association’s federal legislative agenda - in particular, the call to preserve and improve Medicaid and to support additional funding of Alzheimer research through the National Institutes of Health.
- Incorporate National priorities regarding Medicaid into regular advocacy agenda.
- Promote appropriate federal initiatives at Memory Day, Memory Walk and other public avenues that have an advocacy focus.
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West Virginia
The Alzheimer's Association, WV Chapter advocacy priorities in West Virginia for 2007 were developed using feedback from individuals with Alzheimer's disease, their family members and caregivers, and health care professionals.
It is estimated that four and a half million Americans have Alzheimer's disease, and more than 42,000 of those individuals are West Virginians. Alzheimer's disease. affects approximately 10% of the population over the age of 65, increasing to nearly 50% of those over the age of 85. By the year 2011, 400,000 West Virginia baby boomers begin to reach the age of greatest risk. Left unchecked, Alzheimer's will overwhelm our health care system, bankrupt Medicare and Medicaid and destroy the personal financial security of millions of American families.
The Alzheimer's Association, WV Chapter will advocate for the following in West Virginia:
1. We will continue to diligently monitor Legislative Rule development, review and implementation, as intended in passage of SB 236 in 2005 which deals with Alzheimer's specific training for all nursing home direct care staff.
2. In addition we will monitor the rule making process for the Alzheimer's Registry as intended int he passage of SB 112 in 2006.
3. Recognizing the ever increasing numbers of individuals with Alzheimer's, we advocate for consistent increase in Alzheimer's Respite Care funding administered by the West Virginia Bureau of Senior Services.
4. Strongly urge West Virginia Medicaid to consider the unique conditions and needs of individuals with Alzheimer's and other dementias when developing medical criteria for admission to the aged/disable waiver. Such unique aspects include: given the nature of the disease, individuals may appear more or less capable at certain times of the day; utilizing the primary caregiver in assessing the individual, etc.
5. Support public policies and programs which serve to promote the development and reimbursement of alternative community services, which enable individuals to be served in home and community settings, such as day care, transportation, and in-home services and sources of funding to assist families with these needs.
6. We will continue to advocate for quality care in nursing homes and other long-term care facilities, which would include:
- Promote the Dementia Care Practice Recommendations adopted nationwide by the Alzheimer’s Association.
- Strong enforcement of federal nursing home standards.
- Adequate levels of reimbursement tied to salaries and benefits for direct care staff.
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- Staffing levels sufficient to ensure quality care for all residents.
- Job training that is focused on a dementia care career ladder and advancement opportunities.
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Ohio
The Alzheimer's Association, WV Chapter is a member in the Ohio Council of the Alzheimer's Association, which is comprised of all Chapters whose service area covers the state of Ohio.
Ohio Council of the Alzheimer's Association
Vision: The Ohio Council of the Alzheimer’s Association, a coalition of member chapters, is dedicated to assuring the highest quality life for all Ohioans with Alzheimer’s disease and related dementias, their families and caregivers. The Ohio Council’s expertise, representation and passion will lead a statewide movement such that no public policy is made about our issues without the guidance of our unified voice.
Mission: The mission of the Ohio Council of the Alzheimer’s Association is to help Ohio’s chapters better meet the needs of Ohioans touched by Alzheimer’s disease or a related dementia through collaborative efforts in the areas of family support, education and advocacy.
Public Policy Agenda 2006-07
To meet the demands of the growing population of those affected by Alzheimer's disease, the Ohio Council of the Alzheimer's Association respectfully requests:
- An additional $2 million for Alzheimer's core services to be administratively earmarked in the Department of Aging Alzheimer's Respite Line Item (ALI 490-414). This would bring the total annual allocation for the Alzheimer's Respite Line Item from $4.1 million to $6.1 million.
- Continued support and funding of quality care initiatives that promote dementia-specific training and accreditation of staff in Ohio's health care facilities.
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Training Legislation A Reality in 2005
Through the diligent advocacy efforts of both staff and our many dedicated volunteers, we achieved two of our legislative initiatives this session. Senate Bill 236 requiring DHHR to promulgate a rule requiring dementia specific training for all direct care staff passed the WV legislature in early April.
This was the third year that we introduced training legislation. Working closely with many state leaders over the past year, our efforts were finally successful.
In addition, the respite line item was renamed the Roger Tompkins Memorial Respite Line Item, in memory of former House of Delegates member and WV Attorney General, Roger Tompkins, who had Alzheimer’s.
Over the next year, we feel confident that, in Roger’s memory, legislators will recognize the need for additional respite funds, and our advocates will be working to make sure that the line item is increased in the near future.
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Important Legislation for Alzheimer's Families Needs YOUR Help!
The Alzheimer’s Association supports the Ronald Reagan Alzheimer’s Breakthrough Act, which was reintroduced in Congress on March 10, 2005. The Reagan Act would authorize Congress to double the funding to $1.4 billion annually for Alzheimer’s disease research and provide important support programs for individuals with the disease, their families and caregivers, including respite funds and a tax credit for caregivers.
The greatest threat to effectively treating and preventing this disease is lack of adequate funding for research. Investing now in Alzheimer’s research is the best hope we have for addressing the soaring costs of care and saving our healthcare system.
For the first time, there is real hope that we can reduce the growing threat of Alzheimer’s disease through breakthroughs in disease prevention in the next 10 years. New discoveries are occurring regularly, holding great promise to shorten the duration of the disease or lessen its effects. Please call or write your members of Congress today, and ask them to support the Ronald Reagan Breakthrough Act of 2005.
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