Alzheimer's Foundation of America


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About AFA

Details of our 2009 Advocacy Agenda


AFA’s current public policy agenda includes:

1) Effective national health care reform, including

Expanding the geriatric workforce
Background: Our nation faces an impending crisis as the number of older individuals with more complex health needs outpaces the number of healthcare providers with the knowledge and skills to adequately care for them. If current workforce trends do not change, we will continue to fail to ensure that every older American is able to receive high-quality care. An April 2008 report by the Institute of Medicine (IOM), “Retooling for an Aging America: Building the Health Care Workforce,” calls for immediate investments in enhancing the geriatric competencies of the entire workforce, increasing the recruitment and retention of geriatric specialists and caregivers, and bolstering the delivery of care for older adults.

What AFA is doing:
AFA is a member of the Eldercare Workforce Alliance , a broad based coalition of 29 national organizations representing all aspects of the healthcare delivery system, including consumers, family caregivers, direct-care employees and healthcare professionals. Through the coalition, AFA supports S. 245 (Kohl), H.R. 468 (Schakowsky), the “ Retooling the Health Care Workforce for an Aging America Act of 2009,” which would address many key recommendations in the IOM report. It would expand geriatrics training for medical school and other health professions faculty; physicians, nurses, social workers, clinical psychologists and other allied health professionals; and nurses' aides, home health aides and other direct-care workers. In addition, it would provide training for family caregivers who provide the majority of daily, hands-on care for millions of older Americans.

Click here to read a coalition letter urging the Senate Committee on Health, Education, Labor and Pensions to include S. 245 in health care reform.

 

Adding a care coordination benefit to Medicare
Background: According to the Centers for Medicare & Medicaid Services (CMS), 95 percent of Medicare beneficiaries with Alzheimer’s disease have one or more other chronic conditions, such as coronary heart disease, congestive heart failure, diabetes and chronic obstructive pulmonary disease (COPD).  Overall, one in five Medicare beneficiaries with multiple chronic illnesses account for two-thirds of Medicare spending. Medicare beneficiaries with multiple chronic illnesses see an average of 13 different physicians; fill 50 different prescriptions a year; and are 100 times more likely to have a preventable hospitalization than someone with no chronic conditions.

What AFA is doing: Studies have shown that coordinated care for this population can reduce healthcare expenditures, improve quality of care and enhance health outcomes.  AFA is urging Congress to support S. 1004 (Lincoln), H.R. 2307 (Green), “The Reaching Elders with Assessment and Chronic Care Management and Coordination Act” or “RE-Aligning Care Act,” and/or S. 1131 (Wyden), H.R. 2560 (Markey), the “Independence at Home Act of 2009.”  These approaches would create a new benefit under Medicare for care coordination and annual geriatric assessment.

Click here to read our letter of support for S. 1004, and click here to read our letter of support for S. 1131.

 

Mandating transparency in nursing homes
Background: The nursing home industry has changed dramatically in the last two decades. Buyout firms have set up layered entities to run their nursing homes and avoid accountability for the quality of care they provide. Even officials at the Centers for Medicare & Medicaid Services (CMS) have testified that they do not know who owns all of the nation’s nursing homes—despite the fact that the industry receives $75 billion a year in Medicare and Medicaid funding.

What AFA is doing: AFA believes S. 647 (Kohl/Grassley), (House bill not yet introduced), the “ Nursing Home Transparency and Improvement Act of 2009,” will increase public transparency of nursing home owners and operators by requiring nursing homes to disclose their corporate owners and the affiliated entities that operate, manage or control them. By implementing reporting requirements that show direct care costs and nurse staffing levels and turnover patterns, the no-cost bill will provide families and policymakers critical new information to evaluate the quality of services provided in nursing homes across the country. The bill will also make other quality-related information available to consumers; make it easier for family members to file complaints about poor care; and develop a model for independent government monitoring of nursing home chains.  S. 647 also would require facilities to include dementia management and abuse prevention training as part of pre-employment training.

Click here
to read a letter of support for S. 647 signed by AFA and other national organizations.



Creating a long-term services and supports benefit
Background: An estimated 10 million Americans currently need long-term services, and this number is projected to increase to 26 million by 2050. However, the nation lacks a coordinated, national public-private system for adequately delivering long-term services and supports. Currently, Medicaid provides nearly half of all funding for these services, which burdens states and requires individuals to become and remain poor to receive the help they need.

What AFA is doing: AFA urges Congress to support S. 697 (Kennedy), H.R. 1721 (Pallone), the “ Community Living Assistance Services and Supports Act” or the “CLASS Act.”  This bill would create a disability insurance program financed through voluntary payroll deductions for adults who become unable to perform at least two activities of daily living. The measure would provide a cash benefit to help obtain services and supports, while providing disabled individuals more choices and opportunities to live and participate in their communities.

Click here to learn more about the issue.

 

Ensuring credible comparative effectiveness research

Background: Comparative Effectiveness Research (CER) compares treatments and strategies to improve health. This information is essential for clinicians and individuals to decide on the best course of care.

What AFA is doing: As an advocate for CER, AFA is a member of the Alliance of Comparative Effectiveness Stakeholders (ACES) coalition. The ACES coalition supports CER as part of health care reform, but urges Congress to consider the following: 1) to be truly effective, CER must include research on at-risk and under-served populations, individuals with disabilities and the chronically ill; 2) any CER initiative must include a formal structure to ensure broad public input and transparent decision-making as recommendations are determined; and 3) Congress should bar this research from being used to make coverage decisions by Medicare, Medicaid or any other public program.

Click here to read a letter from the ACES coalition to the Senate Finance Committee.

 

Providing advance planning education and resources
Background: According to the National Hospice and Palliative Care Organization, research shows that individuals who have discussions about end-of-life care have less invasive medical treatments and a higher quality of life.

What AFA is doing: AFA backs S. 1263 (Warner), H.R. 3172 (Baldwin), the “Senior Navigation and Planning Act of 2009,” which would create a new transitional care benefit through hospice. This would include palliative care consultation services, patient and family counseling, respite services and in-home caregiver training, while also allowing for the continuation of curative treatments. The bill requires physicians to provide information on advanced care planning for individuals specifically diagnosed with certain conditions; provides incentives for accreditation and certification in hospice and palliative care; requires more comprehensive discharge planning; and increases public awareness about the importance of advance planning.

Click here to read AFA’s letter in support of S. 1263, and click here to learn more about the legislation .

 

Expanding Medicare coverage for adult day care
Background: According to the National Family Caregivers Association, more than 50 million people provide care for a chronically ill, disabled or aged family member or friend during any given year. Many family caregivers make direct, out-of-pocket expenditures to help support care recipients and often sacrifice their long-term financial and personal well-being to do so.  The AARP estimates that family caregivers provide an estimated $350 billion in uncompensated care annually. Caregiving also places a huge economic toll on the workplace. According to the MetLife Mature Market Institute and the National Alliance for Caregiving, the total estimated cost to employers for full-time employees with caregiving responsibilities is $33.6 billion annually.

What AFA is doing: Adult day centers serve as an effective source of relief to family caregivers and provide quality care options for our nation's elderly population, which is about to dramatically increase with the aging of the baby boomer generation . AFA is urging Congress to support H.R. 3043 (Linda Sánchez), (Senate bill not yet introduced), the “Medicare Adult Day Care Services Act of 2009,” which would include adult day care as a covered provider of post-acute services under Medicare. This bill would pay adult day care providers 98 percent of the Medicare-certified home health rate and give seniors the option to choose adult day care or in-home care. Services at adult day care may include: nursing, physical, occupational and speech therapy, dignified assistance with activities of daily living, nutrition therapy, health monitoring, social interaction, stimulating activities and transportation. These care hours and additional services are critical to keeping individuals healthier and at home. In addition, the social aspects of adult day care may offer some relief from the isolation and depression that often accompany chronic illness and disabilities.

Click here to read a letter of support for H.R. 3043 signed by AFA and more than 85 other national and state and local organizations .

 

2) More resources for treatment and caregiver support services related to Alzheimer’s disease

Background: Nearly 60 percent of individuals with Alzheimer’s disease live at home. Caregivers of people with Alzheimer’s disease face a variety of challenges and spend more time providing assistance than caregivers of people with other types of diseases, from helping loved ones with bathing and dressing to managing their legal and financial affairs. Research shows that family caregivers of individuals with Alzheimer’s disease endure chronic stress that causes a decline in their own immune function and an increased risk of death. 

What AFA is doing: AFA supports the re-introduction of the “Alzheimer’s Treatment and Caregiver Support Act,” which was sponsored last year in the 110th Congress by Representative Maxine Waters. This legislation would provide grants to public and non-profit organizations to improve treatment for individuals with Alzheimer’s disease, and expand training and support services for caregivers. AFA is the lead organization in support of this legislation and enlisted the support of more than 65 national and local organizations and 117 House co-sponsors in the 110th Congress . It is expected to be re-introduced in the 111th Congress this year.

Click here to read a copy of H.R. 1032, the bill from the 110th Congress.

 

3) Expanded programs to help find missing persons with dementia

Background: It is estimated that 60 percent of individuals with Alzheimer's disease are likely to wander at some point during the progression of their illness. Wanderers are vulnerable to dehydration, weather conditions, traffic hazards and individuals who prey on people who are defenseless. Up to 50 percent of individuals with Alzheimer’s disease who wander will become seriously injured or die if they are not found within 24 hours.

What AFA is doing: AFA has been collaborating with Project Lifesaver International, a national nonprofit organization that features rapid response technology, to reauthorize and double the funding for the Missing Alzheimer’s Disease Patient Alert Program, a Department of Justice grant program that provides funding to non-profit organizations for the identification and search and rescue of missing persons with dementia. AFA supports H.R. 908 (Waters), (Senate bill not yet introduced), “ Missing Alzheimer's Disease Patient Alert Program Reauthorization of 2009,” which would reauthorize this program and provide competitive grants to multiple organizations. H.R. 908 passed the House in February 2009, and AFA is working to secure a Senate sponsor for a companion bill. AFA and Project Lifesaver International also support efforts to pass S. 557 ( Martinez), H.R. 632 (Doggett), the “National Silver Alert Act of 2009,” which would create an alert system for missing adults; the House has passed the bill and the Senate has referred it to the Committee on the Judiciary.

Click here to read a letter in support of H.R. 908, which reauthorizes the Missing Alzheimer’s Disease Patient Alert Program, and click here to read a letter that supports the 2010 fiscal year funding for the program.

 

4) Dementia-related research, outreach and education for Hispanic Americans

Background: According to surveys conducted by AFA, Hispanic caregivers were significantly more likely (33 percent) than caregivers of other races (23 percent) to believe that Alzheimer’s disease is a normal part of aging and were also significantly more likely (67 percent) to dismiss the symptoms of Alzheimer’s disease as old age than respondents of other races (53 percent). The resulting delay in diagnosis can likewise delay treatments that can help hurt slow progression of symptoms, and it can increase stress on family caregivers.

What AFA is doing: AFA urges Congress to support H.R. 2987 (Linda Sánchez), (Senate bill not yet introduced), the “ Cure and Understanding through Research for Alzheimer’s Act of 2009,” or the “La CURA Act of 2009,” which would increase funding to the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention for adequate Alzheimer’s research, outreach and education in all communities.   La CURA would authorize an education and outreach program to promote public awareness and risk reduction with respect to Alzheimer's disease (with particular emphasis on education and outreach in Hispanic populations), as well as address diversity deficiencies in research by encouraging increased participation by Hispanics in NIH clinical trials and epidemiological studies.

Click here to read La CURA Act, and click here to read Representative Sánchez’s press release.

 

5) Fully-funded respite care services

Background: According to the Lifespan Respite Task Force, the nation’s estimated 50 million family caregivers provide about 80 percent of long-term care . Respite care, the most frequently requested family support service, has been shown to provide family caregivers with the relief necessary to maintain their own health, bolster family stability, keep marriages intact, and avoid or delay more costly nursing home care placement.

What AFA is doing: AFA and our coalition partners at theLifespan Respite Task Force are urging Congress to appropriate the full authorized amount for grants under the “Lifespan Respite Care Act of 2006.” The act authorizes competitive grants to state agencies through Aging and Disability Resource Centers in collaboration with public or private non-profit organizations to make quality respite accessible to family caregivers regardless of age or disability. The act was signed into law in 2006 and will receive first-time funding of $2.5 million in current 2009 fiscal year. The law authorizes Congress to spend up to $71.11 million in the 2010 fiscal year—the full amount AFA and its partners are pressing for.

Click here to read a coalition letter of support requesting full funding for the Lifespan Respite Care Act.

 

6) Falls prevention research and programs

Background: Despite being largely preventable, falling is a common cause of unintentional injury among people with dementia. Overall, the Centers for Disease Control and Prevention (CDC) reports that one in three Americans aged 65 and older falls each year.  As well, in 2005, the latest year for which CDC has statistics, 1.8 million older adults were treated in emergency departments for nonfatal injuries from falls, 433,000 were hospitalized and nearly 16,000 died from their injuries.  CDC confirms that $19.2 billion annually is spent on treating the elderly for the adverse effects of falls.   

What AFA is doing: AFA is part of the Falls Free Coalition, a group of national organizations and state coalitions working to reduce the growing number of falls and fall-related injuries among older adults. The coalition is advocating for $10 million in federal funding for the CDC’s National Center for Injury Prevention and Control to address the very costly, but preventable problem of falls among older adults. 

Click here to read a Dear Colleague letter from Senator Barbara Mikulski in support of the funding that AFA e-mailed to the full Senate, and click here to learn more about the issue.

 

7) Elder abuse prevention

Background: According to the National Research Council, between one million and two million Americans aged 65 or older have been injured, exploited or otherwise mistreated by someone on whom they depended for care or protection. The frequency of elder mistreatment will undoubtedly increase over the next several decades as the population ages.

What AFA is doing:: AFA supports S. 795 (Hatch), H.R. 2006 (King), the “ Elder Justice Act of 2009,” which aims to make communities safer for older Americans by developing new strategies and requiring prompt reporting of crimes in nursing homes. If enacted into law, the Elder Justice Act would provide federal resources to state and community officials who currently grapple with elder abuse with scarce means and fragmented systems. Mechanisms for identifying and tracking elder abuse indicate that many instances of injustice are not reported for appropriate prosecution. This legislation has been endorsed by the Elder Justice Coalition, a national membership organization comprised of 584 groups, including AFA, that are dedicated to eliminating elder abuse, neglect and exploitation in America.

Click here to learn more about the legislation and the coalition.

 

8) Consumer rights protections

Background: In recent years, a growing number of long-term care facilities have required individuals—often unwittingly—to agree prior to admittance to arbitration as the only method for dispute resolution during their residency.  Such agreements involve the waiver of a fundamental constitutional right and prevent a resident from having malpractice and other claims heard by an impartial judge or jury.

What AFA is doing: AFA supports S. 931 (Feingold), H.R. 1020 (Johnson), the “Arbitration Fairness Act of 2009,” which declares that no pre-dispute arbitration agreement shall be valid or enforceable if it requires arbitration of an employment, consumer or franchise dispute, or a dispute arising under any statute intended to protect civil rights. This would include disputes involving long-term care facilities. AFA also supports S. 512 (Martinez), H.R.1237 (Linda Sánchez), the “Fairness in Nursing Home Arbitration Act of 2009,” which applies specifically to long-term care facilities and would end the practice that requires families, during the stressful process of admitting a loved one to a nursing home or assisted living facility, to forgo the right to sue the facility if the resident is injured or dies because of the facility's neglect. AFA signed on in support of both bills and is working with a number of other national organizations to increase support.

Click here to read a letter of support for the Fairness in Nursing Home Arbitration Act, and click here to learn more about mandatory arbitration.