- First enacted in 1965, the Older Americans Act (OAA) funds critical services for older adults and their caregivers, including meals, job training, senior centers, caregiver support, transportation, health promotion, benefits enrollment, and more. Title IIIE of the OAA, known as the National Family Caregiver Support Program (NFCSP), was added to the law in 2000 and has the most direct impact on family caregivers. Administered at the state and local levels, the NFCSP provides information and assistance to family caregivers, counseling and support, caregiver training and education, respite care, and limited supplemental services to compliment the care provided by family caregivers.
The OAA has been reauthorized with updates and improvements several times in the last four decades, and we have this opportunity once again. In the fall of 2011, the National Alliance for Caregiving presented our priorities for OAA reauthorization to Congress. A summary of those priorities is provided below.
- Status: The National Alzheimer’s Project Act (S. 3036) was passed by Congress in December 2010 and signed into law by President Obama January 4, 2011.
- The law requires the Secretary of Health and Human Services to oversee the creation of a national plan to overcome Alzheimer’s; to coordinate the health care and treatment of people with the disease; to ensure the inclusion of racial and ethnic minorities in studies related to Alzheimer’s; and to work to combat the disease globally.
UPDATE: As mandated by the law, on May 15, 2012, the Department of Health and Human Services (HHS) released the first-ever National Plan to Address Alzheimer’s Disease. This plan sets forth five goals, including the development of effective prevention and treatment approaches for Alzheimer’s disease and related dementias by 2025. It also addresses caregiver needs. In particular, the third goal is to “Expand Supports for People with Alzheimer’s disease and Their Families.” Strategies under this goal include ensuring that caregivers receive culturally sensitive education, training, and supporting materials; enabling caregivers to continue providing care while maintaining their own health and well-being; and assisting families in planning for future care needs. The Alliance, along with several other organizations and stakeholders, provided input into the plan as it was being developed. In addition to the plan, HHS has also developed a new website to provide information about Alzheimer’s and related dementias.
- Status: Introduced in the Senate on November 8, 2011 by Senators Herb Kohl (D-WI) and Barbara Mikulski (D-MD). It has been referred to the Senate Committee on Health, Education, Labor and Pensions.
- The main provisions of the bill are:
- Caregiver Assessment: The bill creates a voluntary caregiver assessment program in which states would apply for funding from the Administration on Aging to implement caregiver assessments. The assessments would be focused on identifying caregivers’ needs and would require referrals to support and services, as well as follow up with the caregiver after a period of time. The bill also requires participating states to report back the data collected from the assessments to AoA.
- Long-Term Care Ombudsman Program: Strengthens training for ombudsmen, enhances their access to information, increases the public’s access to ombudsmen
- Creates Advisory Council to Coordinate and Streamline Senior Benefits and Legal Services Programs
- The National Alliance for Caregiving supports this bill because providing states the option to provide caregiver assessment as a component of NFSCP services is critical in order to identify those services and supports that can help caregivers stay physically and emotionally healthy, as well as provide training and education to help them become better caregivers. By requiring that assessments include referrals to appropriate services and follow-up, this bill has the potential to improve the lives of thousands of family caregivers in different states. In addition, the data collected and aggregated from the assessments will be invaluable for further understanding how to meet the diverse needs of family caregivers.
- Status: Introduced in the Senate on January 26, 2012 by Senator Bernie Sanders (I-VT), Chairman of Subcommittee on Primary Health and Aging. It has been referred to the Senate Health, Education, Labor and Pensions (HELP) Committee.
- The main provisions of the bill are:
- Increased funding for meal programs, the Senior Community Service Employment Program (SCSEP), supportive services, and health promotion and disease prevention.
- Improvements and streamlining of meals programs to maintain the integrity of each the congregate meals program and home-delivered meals.
- Enhanced preventive health care through innovative models and access to primary care.
- Supporting seniors through the Senior Community Service Employment Program (SCSEP).
- Updating the Consumer Price Index for Americans 62 years and older (CPI-E) based on GAO’s recommendations for expanding and improving its future use in determining the cost of living adjustment (COLA).
- Updating the legislation’s definition of “greatest economic need” and economic security.
- Strengthening the independence of the Ombudsman program and updating legal services provisions. The bill would allow some National Family Caregiver Support Program dollars to be used to support family and resident councils in nursing homes.
- Modernizing senior centers and community planning for an aging population, including a new Community Planning grant program to be administered by AoA and implemented by states.
- Re-defining “greatest social need” to include Lesbian, Gay, Bisexual, Transgender, HIV positive older individuals, as well as persons with Alzheimer’s disease.
- For more information:
Sen. Sanders’ press release
- Status: Introduced in the Senate on October 20, 2011 by Senator Al Franken (D-MN). It has 3 cosponsors and has been referred to the Senate Health, Education, Labor and Pensions (HELP) Committee.
- The main provisions of the bill are:
- Requiring states to develop a Home Care Consumer Bill of Rights to protect older adults who receive services in their homes, along with a plan for enforcement. The bills of rights must address consumers’ rights to basic safety, access to information, choice, dignity and individuality, and redress of grievances.
- Requiring the Administration on Aging to assist states in developing a Bill of Rights and enforcement plans and to develop a process for reviewing and approving them.
- Providing funding to support states that choose to have a Home Care Ombudsman Program, which provides ombudsman services beyond nursing homes to older adults who receive home and community-based services.
- Establishing a National Adult Protective Resource Center that will improve the capacity of state and local adult protective services.
- Requires the Assistant Secretary of Aging to identify quality assurance standards for home and community-based long-term care programs, service providers and referral resources and to work with ADRCs and AAAs to develop consumer-friendly methods to let consumers know which services and providers meet those standards.
- The National Alliance for Caregiving supports this bill because family caregivers, as well as older adults, are consumers of OAA services. All consumers deserve high quality services and to have their rights and access to information respected.
- For more information:
Sen. Franken’s press release
The Older Americans Act funds critical services like meals, job training, caregiver support and senior centers. The act is up for reauthorization, providing an opportunity to amend and potentially add provisions to the current law to make it more effective at assisting older adults and their caregivers. The Senate is currently drafting a reauthorization bill, which is set for consideration in the early part of 2012. In November, Senators Herb Kohl (D-WI) and Barbara Mikulski (D-MD) introduced the Strengthening Services for America’s Seniors Act (S. 1819), which includes their priorities for the Older Americans Act reauthorization. The main provisions of the bill would:
- Create a voluntary caregiver assessment program in which states would apply for funding to implement caregiver assessments. The assessments would be focused on identifying caregivers’ needs and would require referrals to support and services, as well as follow up with the caregiver after a period of time.
- Strengthen training for long-term care ombudsmen, enhance their access to information, and increase the public’s access to ombudsmen.
- Create an Advisory Council to coordinate and streamline senior benefits and legal services programs. These provisions will likely be included in the OAA reauthorization currently being drafted.
In October, Rep. Cathy McMorris Rodgers (R-WA) and Rep. Jim Langevin (D-RI) introduced the Lifespan Respite Reauthorization Act (HR 3266). The bill makes no changes to the original law, other than decreasing authorization funding levels to $50 million over five years (FY 12-FY 16). The Act authorizes competitive grants to Aging and Disability Resource Centers in collaboration with a public or private non-profit state respite coalitions or organization to make quality respite available and accessible to family caregivers regardless of age or disability. The law allows grantees to identify, coordinate and build on federal, state and local respite resources and funding streams, and would help support, expand and streamline planned and emergency respite, provider recruitment and training, and caregiver training.
- Status: Introduced in the House on 4/6/2011 by Representatives Edward Markey (D-MA) and Chris Smith (R-NJ). It has 136 cosponsors, and it has been referred to the House Energy and Commerce Committee and the House Ways and Means Committee. Introduced in the Senate on 4/6/2011 by Senators Debbie Stabenow (D-MI) and Susan Collins (R-ME). It has 18 cosponsors, and it was referred to the Senate Committee on Finance.
- The bill would amend Medicare to cover comprehensive Alzheimer’s disease and related dementia diagnosis and services. This includes required follow-up care planning for patients diagnosed with Alzheimer’s, along with their caregivers, to discuss medical options, as well as available supports, services and other information for family caregivers.
- The National Alliance for Caregiving supports this bill because it recognizes the importance of care planning for people with dementia and their caregivers, as well as the key role family caregivers play in an Alzheimer’s patient’s care. The bill allows caregivers to attend the follow-up care planning meeting without the patient in attendance if that is the best situation for the patient and caregiver.
For more information:
- Status: Introduced in the House on 8/5/2011 by Rep. Maxine Waters (D-CA). It has 17 cosponsors, and it was referred to the House Energy and Commerce Committee.
- The bill would make grants to public and nonprofit health care providers to expand training and support services for families and caregivers of patients with Alzheimer’s disease. Eligible grant recipients include health care organizations, community health centers, nursing homes, senior centers, Area Agencies on Aging, community-based organizations, and State, local and tribal health agencies and social service agencies.
- The National Alliance for Caregiving supports this bill because health care providers are often the first place caregivers turn for information and support. In a survey of Alzheimer’s caregivers, 70% reported that they first went to a physician for more information when they suspected their loved one had Alzheimer’s or dementia. The more equipped health care providers are to provide, not only medical information about the disease, but training and support to family caregivers, the better prepared caregivers will be to provide quality care to those suffering from Alzheimer’s and other dementia.
- Status: Introduced in the Senate on 5/17/2011 by Sen. Bernie Sanders (I-VT). It has no cosponsors, and it was referred to the Senate Committee on Veterans’ Affairs. A hearing on this and other bills pending before the Committee was held on 6/8/2011. For more information on the hearing, visit: http://veterans.senate.gov/hearings.cfm?action=release.display&release_id=ab373435-90f8-4759-8b6f-ca24b78a4e02
- The bill would increase the amount of assistance authorized for disabled veterans who are temporarily living with a family member: from $14,000 to $28,000 in cases where a home with special features must be acquired; and from $2,000 to $5,000 in cases where the current residence can be adapted.
- The National Alliance for Caregiving supports this bill because the financial burden on caregiving families – particularly caregivers of veterans, who tend to be younger than other caregivers – can be huge. According to a national study of veterans’ caregivers, half (50%) feel a high degree of financial hardship, compared to just 13% of caregivers nationally. Given that 80% of veteran care recipients live with their caregivers, this financial assistance for housing and home modification would greatly benefit veterans and their caregiving families. For more information, see Caregivers of Veterans – Serving on the Homefront.
- Status: Introduced in the Senate on 1/25/2011 by Senators Mike Crapo (R-ID) and Amy Klobuchar (D-MN). It has no cosponsors, and it was referred to the Senate Committee on Armed Services.
- The bill would establish an annual award known as the Military Family-Friendly Employer Award, to be handed out by the Department of Defense, for employers who have developed workplace flexibility policies and practices to assist working spouses and caregivers of members of the Armed Services who are deployed away from home and upon their return from deployment.
- The National Alliance for Caregiving supports this bill because caregivers of veterans very often experience an impact on their employment situation – often resulting in a loss of wages – due to their caregiving. It is imperative that employers grant flexibility to these employees if they are to remain in the workforce and able to support their families. In a survey of veterans’ caregivers, of those who were employed at some point during their caregiving, six in ten (62%) reported cutting back the number of hours they worked and nearly half (47%) said they eventually stopped working or took early retirement. Fewer than one in ten veterans’ caregivers reported neither of those impacts. Recognizing employers who go above and beyond to support caregivers could encourage others to do the same. For more information, see Caregivers of Veterans – Serving on the Homefront.
- Status: Introduced in the House on 4/8/2011 by Rep. Carolyn Maloney (D-NY). It has 9 cosponsors, and it was referred to the House Education and Workforce Committee, Oversight and Government Reform Committee, and House Administration Committee.
- The bill would expand the Family and Medical Leave Act (FMLA) to employers with 25 or more employees (currently covers employers with 50 or more employees). Furthermore, in expanding the law to cover many parental activities, the bill would also allow FMLA to cover employees who need intermittent leave to attend to the care needs of an elderly relative, including visits to a nursing home.
- The National Alliance for Caregiving supports this bill because working caregivers often struggle to balance their work responsibilities with their caregiving responsibilities, and having more flexibility to do so makes them better workers and better caregivers. In a survey of working caregivers, nearly all reported some informal adjustments to their work schedule due to caregiving, whether it was making calls at work or having to come in late or leave early. A full two-thirds (67%) of respondents reported taking time off during the day to tend to caregiving needs, something this bill would help address.
- Status: Introduced in the House House on 6/24/2011 by Rep. Carolyn Maloney (D-NY). It has 46 cosponsors, and it was referred to the House Education and Workforce Committee, Oversight and Government Reform Committee, and House Administration Committee. It was introduced in the Senate on 6/28/2011 by Sen. Dick Durbin (D-IL). It has 12 cosponsors, and it was referred to the Senate Health, Education, Labor and Pensions Committee.
- The bill would expand the Family and Medical Leave Act to provide employees leave to care for a domestic partner or his or her child, parent-in-law, adult child, sibling, grandparent, grandchild, son-in-law, or daughter-in-law, if such a person has a serious health condition. Currently, the law only covers caregiving for a spouse, child or parent.
- The National Alliance for Caregiving supports this bill because caregiving situations take many different forms, and the current law severely restricts those who have access to protected leave from work in order to care for a loved one. While the vast majority of caregivers (86%) are caring for a family member, nearly one-third (32%) of caregivers are caring for a relative other than a spouse, parent or child. It is important that families have the flexibility to make caregiving decisions that are best for them, without having to worry that someone could lose their job.
- Status: Introduced in the House on 6/22/2011 by Rep. Nita Lowey (D-NY). There are no cosponsors, and it was referred to the House Committee on Ways and Means.
- The bill would grant Social Security credit to a family caregiver for each month during which the individual was engaged for at least 80 hours in providing care to a dependent relative without monetary compensation for up to five years of such service.
- The National Alliance for Caregiving supports this bill because family caregivers who leave the workforce to care for an aging parent or other sick relative lose thousands of dollars in lost wages, often risking their own financial security now and in the future. For women over 50 years, the cost impact of leaving the workforce to care for a parent averages $324,044 per person in lost wages and retirement benefits; of which $131,351 is lost Social Security benefits. For men caregivers, the total loss averages $283,716, of which $144,609 is lost Social Security benefits. This bill acknowledges that caregiving is valuable work, and it helps restore some financial security for caregivers heading into retirement.
- Read the NAC letter to Senator Herb Kohl