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The Fundamental Need to Support Informal Caregivers

posted on Fri, Nov 20 2015 2:19 pm by Jenna Snyder

Older Americans who think Medicare is going to cover their long-term care expenses should think again. In fact, Medicare generally only provides long-term coverage for the first 100 days after a qualifying hospital stay. Due to the increasingly extreme cost of long-term services and supports (LTSS), few individuals can afford to pay out-of-pocket for LTSS. So, how are older Americans paying for their long term care needs?

Long-term care insurance (LTCI) provides coverage for a range of LTSS not offered by Medicare. However, only about eight percent of Americans had LTCI policies in 2014. A combination of rising premium costs, certain policy features and increasingly inadequate benefits may be why many Americans feel LTCI might not being worth the cost. While Medicaid may be an option for some individuals, the program involves complex legal issues and strict eligibility requirements, which makes it an unattractive LTSS payment option.

In short, older Americans are not paying for long-term care needs. According to the Center for Disease Control and Prevention, 90 percent of the long-term care services received in the U.S. is provided by informal, unpaid caregivers such as family members, friends, and neighbors.

A recent AARP report revealed that informal caregivers in the U.S. provided an estimated $470 billion in unpaid services in 2013. In comparison, Medicare spent $74.1 billion on post-acute care and total national spending on LTSS was $310 billion (including Medicaid, private long-term care insurance, out-of-pocket and other public benefits). These numbers indicate that the existing support network of informal caregiving is the backbone of the nation's long-term care system.

Caring for a vulnerable disabled person with poor mental health or physical impairments can be demanding, overwhelming and stressful. Despite the tremendous responsibilities associated with caregiving, the role of informal caregivers has not been adequately acknowledged. Unpaid caregivers today often operate with inadequate support systems and lack information and skills.

Different forms of publicly funded respite care have been developed to assist in the caregiving task and address the challenges of informal caregivers. Unfortunately, inadequate program funding has resulted in limited available resources for informal caregivers. With the continued growth in the number of people requiring long-term care, the current patterns of informal caregiving cannot be maintained nor sustained.

Strategies are needed to help keep informal caregivers from burning out when faced with competing pressures from other family roles, paid employment, and having to bear the caregiving responsibility themselves. States, public health officials, and advocates could seek to identify mechanisms to alleviate what has been termed as caregiver stress syndrome.

For example, earlier this year, Maryland created the Task Force on Family Caregiving and Long-Term Supports to evaluate and recommend actions the state could take to support and encourage informal caregivers. The Task Force will indentify policies, resources, and programs currently available for informal caregivers and find innovative means to address the challenges being experienced by unpaid caregivers. By September 30, 2016, the Task Force must report its findings and recommendations to the Governor and the General Assembly.

The existing support network of informal caregiving is fundamentally irreplaceable as part of the nation's long-term care system. Accessible respite care needs to be expanded to more adequately complement the prevailing unpaid caregiving support network. As our population ages and caregiving demands increase, this is an issue the public health community will need to address.

This blog was prepared by Jenna Snyder, J.D. Candidate, Class of 2016, University of Maryland Carey School of Law, under the supervision of Kathleen Hoke, director of the Network’s Eastern Region.

The Network for Public Health Law provides information and technical assistance on issues related to public health. The legal information and assistance provided in this post does not constitute legal advice or legal representation. For legal advice, readers should consult a lawyer in their state.

Support for the Network is provided by the Robert Wood Johnson Foundation (RWJF). The views expressed in this post do not necessarily represent the views of, and should not be attributed to, RWJF.

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