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Federal and State Family Caregiving Legislation:
Trends in 2007 – 2008

Our nation's health and long-term care systems face severe challenges.  Millions of Americans are uninsured, and millions more with chronic illnesses and disabilities lack the personal resources or access to public programs needed to obtain critical long-term care services.  At the heart of these challenges are the nation's 44 million family caregivers, working under often strenuous circumstances to provide their older or ailing family members, friends, and neighbors the care they need.  Yet, if families and friends are to continue in this role as the backbone of our long-term care system, a variety of policy solutions are needed to address person and family-centered care.

Family caregivers face unique challenges and burdens, including compromised physical and mental health, increased levels of depression, depletion of financial resources, and the job of navigating through broken and disjointed health, long-term care and social service systems.  In these tough economic times, family caregivers are especially vulnerable to extreme financial strain and stress. 

Recognizing caregivers' needs, many federal and state lawmakers have spent the past several years introducing and enacting legislation to provide a variety of supports to caregiving families.  Unfortunately, in the last two years, fiscal crises in the states and other pressing social concerns have meant that few legislative proposals for caregivers have actually passed or been enacted.  This paper summarizes the most recent trends in caregiver legislation introduced in 2007 and 2008 and highlights those initiatives that have been successful. 

Legislative Trends

The majority of the bills introduced at the state and federal levels can be grouped into one or more of the following strategies.  The most common strategies are listed first.

1. Workplace accommodation and family leave policies
   
2. Tax incentives for family caregivers
   
3. Direct services and support for caregivers
   
4. Home and community-based services for care recipients, with provisions related to Medicaid, other state-funded programs, or consumer direction
   
5. Policies that call for more study on a specific caregiving issue and/or for recommendations from a task force or other body
   
6. Support for injured service members, veterans and their family caregivers (federal bills)

The financial impact of caregiving can be severe.  In the struggle to balance caregiving demands and work responsibilities, many working caregivers end up quitting their jobs or cutting back their hours to provide care, thus sacrificing income and savings.  For those who remain in the workplace or who just need extra help, the costs of home care services can be very high and often are not covered by insurance or Medicare.  In addition, the average caregiver spends $5,531 a year out-of-pocket on caregiving expenses, including household goods, transportation, and medical expenses.¹ Policymakers have responded to these challenges in caregivers' lives with the two common strategies: expanding family and medical leave laws, including proposals to establish paid family leave so caregivers can afford to take needed time off to provide care, and providing tax credits for caregiving expenses. However, despite the interest in these strategies, few of these bills have been enacted into law.

The strategy more traditionally used to assist caregivers— providing them direct services and support—was the third most common type of legislation introduced in 2007 and 2008.  At the federal level, these bills often include increased funding for the National Family Caregiver Support Program² or provisions to provide education and training to family caregivers through various federally-funded programs.  At the state level, legislators proposed increased respite services, caregiver education and training, and expansion of comprehensive state-funded caregiver support programs.  However, budget strains in many states prevented most of these bills from passing.  

In addition to those trends which directly target the caregiver, policies that expand services for people with chronic conditions or other long-term care needs also provide benefits for caregivers and are common legislative proposals.  One long-term care trend that continued in the past two years includes proposals to expand access to home and community-based services, including in-home care and adult day services, through Medicaid and other state-funded programs.  Aiming to keep care recipients out of costly residential facilities, many states have either implemented such policies already, are exploring them, or are proposing to expand such programs.  In addition, a growing number of states that haven't already incorporated consumer direction into their  home and community-based programs are considering doing so, which would allow care recipients and their caregivers to choose the services they want and to decide who should deliver them and how they want them delivered.  

Finally, some emerging issues became more prominent in federal policy discussions as a result of targeted advocacy efforts and new research. These include support for the family caregivers of injured service members and veterans returning from Iraq and Afghanistan, geriatric workforce development, and chronic care coordination. 

State Highlights

Approximately half of the states had legislation pending in 2007 and 2008 which would have directly benefited family caregivers.  The following are key examples of some of the bills which passed into law. 

• In May 2008, New Jersey became the third state, behind California and Washington³, to enact a law providing workers with paid family leave.  Much like California's program, the new law will expand the state's disability program to cover workers who take time off to care for a seriously ill child, spouse, domestic partner or parent, or to bond with a new child.  Workers can receive up to two-thirds of their normal paycheck (capped at $524 a week) for up to 6 weeks.
  
• Maryland passed a new law that allows employees to use their accrued paid sick time to care for a sick parent, child or spouse.
  
• Maine extended family and medical leave to workers caring for a sibling with a serious illness.
  
• Arizona established a Lifespan Respite Program for family caregivers of children or adults with special needs who do not otherwise qualify for publicly funded respite services. The new law offers training for respite care providers and supports a statewide respite coalition.
  
• Illinois, Tennessee and Wyoming passed laws expanding their state-funded Home and Community-Based Services (HCBS) programs.  Illinois and Wyoming now allow eligible care recipients to designate family members as their home care providers.  Tennessee reallocated long-term care funding from nursing homes to HCBS.

Federal Highlights

Thirty-nine bills with a direct benefit to family caregivers were introduced in the 110^th Congress (2007 – 2008).⁴ Only one of those bills passed:

• The Support for Injured Servicemembers Act (S. 1894) was signed into law in January 2008 after being incorporated into the National Defense Authorization  Act for FY 2008.  It allows workers to take up to 26 weeks of unpaid, job-protected leave to care for a spouse, child, parent or other next of kin seriously injured in combat.

Other key bills introduced:

• Eleven bills would have provided caregiver tax incentives. While some bills would have expanded the Child and Dependent Care Credit (S. 614, H.R. 1871, H.R. 1911, H.R. 5655) by increasing the amount of care-related expenses taxpayers could claim, by increasing the rate of the credit, or by repealing the requirement that the care receiver live with the taxpayer, other bills (S. 897/H.R. 1807, S. 2121, S. 2267, H.R. 6390, H.R. 6448, H.R. 6665) would have established a new tax credit for those caring for family members with long-term care needs.  None of the proposed bills passed.
  


• Eight bills would have expanded family and medical leave policy.  Following trends increasingly common in state legislation, the Family Leave Insurance Act (S. 1681/ H.R.5873) would have established a paid family leave program—providing up to 12 weeks of paid leave and job protection for workers who need time off to care for a seriously ill family member, to care for a new child, or to recover from their own serious illness—and the Healthy Families Act (S. 910/ H.R. 1542) would have guaranteed workers a minimum of seven paid sick days.
  


• A comprehensive caregiver bill, the Americans Giving care to Elders (AGE) Act (S. 2267) would establish a National Resource Center on Family Caregiving, provide a tax credit of up to $1,200 for eldercare expenses and increase funding for the National Family Caregiver Support Program (NFCSP).  The bill would provide $12 million over 4 years for National Resource Center to identify and develop “best practices,” provide information on caregiver policies and programs, convene educational programs, and provide a national online database of caregiver programs and resources.
  


• In 2008, the Institute of Medicine released a landmark report, Retooling for an Aging America: Building the Health Care Workforce, which examines the looming shortage of health care professionals and others trained to work with older adults.  In response to this problem, two bills focused on geriatric workforce development were introduced in Congress.  The Retooling the Healthcare Workforce for an Aging America Act (S. 3730), which aims to expand education and training opportunities in geriatrics and long-term care for health professionals, direct care workers and family caregivers, is also one of the first federal bills to include a provision for caregiver assessment.  It would permit state Medicaid programs to do an assessment of a family caregiver's needs and to provide referral to appropriate services when he or she is caring for a Medicaid beneficiary who relies on the family caregiver for much of their care.  The Caring for an Aging America Act (S. 2708) would strengthen the recruitment and retention of professionals into geriatric care practice by providing physicians, physician assistants, nurses, psychologists, and social workers with educational loan repayment linked to a service commitment to the aging population.  The legislation would also strengthen direct care workers through career advancement opportunities and would establish a Health and Long-Term Care Workforce Advisory Panel for an Aging America.  

Outlook for Caregiver-Friendly Legislation

While there is continued interest on the part of lawmakers to support family caregivers, the reality is that the current economic crisis makes it hard for any new program or policy, particularly those with a high or moderate price tag, to pass.  Instead, state program administrators and advocates are fighting to save existing programs that serve older adults and their caregivers and to prevent deep cuts.  According to the National Governors Association, 27 states expect budget shortfalls for FY2009 totaling $26 billion.⁵ And the situation going forward looks worse—the majority of states are bracing for difficult times and budget cuts.  All this is happening at a time when the demand for aging and other social services, many of which caregivers depend on for support, is increasing.   

Fortunately, there are some policy proposals and trends that show promise in the near term.  For example, President Barack Obama comes to office having expressed strong support for paid sick days legislation and an interest in working with states to establish paid family leave programs—policies that advocates have been working hard to promote in a number of states.  In addition, with health care reform a top priority of the new Administration, there are opportunities to insert caregiver-friendly provisions into proposals that involve Medicare and Medicaid.  For example,  the Geriatric and Chronic Care Coordination Act (S. 1340/ H.R. 2244) would add care coordination services to Medicare coverage, taking some of the burden off caregivers trying single-handedly to manage their care recipient's health care and to navigate the complex long-term care system.  In addition, including caregiver assessment in Medicare and Medicaid coverage would provide a more universal way of identifying caregivers' needs and directing them to the most beneficial services.

Society has a long way to go before caregivers are fully recognized, their burdens and challenges acknowledged and their needs met.  But with continued advocacy and a commitment to raise caregivers' voices, those who work on behalf of caregiving families—and caregivers themselves—can continue to educate lawmakers about what is needed to support family caregivers and to affect change at the public policy level.

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