Stephanie Mensh

Current and future caregivers, take note.  The bi-partisan Commission on Long Term Care has been holding hearings for a few months on how to redesign Medicare and Medicaid to economically provide long term care (the politically correct term is “long term services and supports or LTSS) for individuals who have chronic, complex medical, cognitive, and other health care needs.  They are considering a broad range of issues, including the role of family caregivers.

I’ve been a caregiver for over 25 years for my husband, Paul Berger, who suffered a severely debilitating stroke at the young age of 36.  He was working full time and had excellent health insurance.  Even so, private health insurance only covers acute care, like tests and the brain surgery to clip the ruptured aneurysm that caused his stroke, followed by a short term of rehabilitation therapy. Over the years since his stroke, private insurers, as well as Medicare, have “saved” money by further cutting and capping rehab and other short-term post-acute services.

This makes no sense to me, since survivors of severe strokes, like Paul, need and can benefit from additional rehab, as well as long term services and supports to make them more independent and more connected to the community. With these services and supports, they are healthier and in the long run, will use less costly medical services.

Although the federal-state Medicaid program provides government-funded long term services and supports for certain low-income elderly and persons with disabilities who meet stringent state and local eligibility criteria, for most persons with chronic, complex health care needs, their families become the providers of their LTSS.  Suddenly a wife or daughter becomes a caregiver, with little more to start than a sheaf of discharge notes and scribbled prescriptions.

The plight of family caregivers is being documented by organizations like the AARP, and researchers. For example, in a recently published, scientifically designed pilot study conducted by the State of New Jersey and the Hilltop Institute of the University of Maryland, Baltimore County, 60% of the caregivers said they were getting too little or no help with their caregiving. The pilot studied 86 caregivers, nearly all of whom were women, ranging in age from 28 to 85 years who had been caring for their relative for an average of about nine years.

The Hilltop researchers recommended that policymakers find a way to provide reimbursement for caregiver assessments and services. The caregiver assessment should include:

  • asking about the caregiver’s job, health, and worries
  • asking if the caregiver can provide the needed care
  • asking about access and availability of help and support, and
  • providing follow-up, including resources to address the caregiver’s needs.

Fortunately, the LTC Commission has received testimony on the need for new policies that recognize the pivotal role of family caregivers.  At least two organizations urged the Commission to find ways for Medicare, Medicaid and private insurers to cover services provided directly to caregivers, including time and resources for educating and training caregivers to understand the healthcare needs of their family members, to assist in providing care, and to access services and supports, including respite care (giving caregivers a rest).

My favorite testimony was by AARP’s Lynn Feinberg during the LTC Commission’s July 17th hearing.  AARP focused on the needs of caregivers, offering an important list of services and policies, including the need to provide financial stability and workforce supports since the majority of caregivers – like me — work full time or part time in addition to their caregiving duties.  My other favorite was a recommendation by Joanne Lynn, M.D., of the Altarum Center for Elder Care and Advanced Illness, to form a volunteer “Caregiver Corps” of college-aged students and retirees who could get stipends, like AmeriCorps, to help families free-of-charge.

What are the chances that Congress will enact benefits for family caregivers?  I’m a realist: small to none.  Instead, it is likely that families will bear even greater responsibilities, with fewer resources.  After all, the LTC Commission was established as part of the January 2013 fiscal cliff legislation.  The Commission was charged to find ways to curb the growth in spending under Medicare and Medicaid for long term services and supports.

And they heard how to do this: Medicare policy must channel individuals with chronic, complex health care needs away from costly inpatient hospitalizations, emergency room visits, and re-hospitalizations and toward better care at home.  Medicaid policy must move these individuals out of costly nursing homes and other long term institutional settings to  “home and community based care,” which mostly translates as moving them back to their families.

Hopefully, when making their recommendations, the LTC Commissioners will heed AARP’s admonition:

“We cannot achieve a better system of LTSS without greater recognition of and support for families and other unpaid caregivers, and addressing coordination of care and workforce issues. Families are already doing as much as they can. Adding to their burden will put both the caregiver and the person needing care at risk.”


Further Resources:

Click here to read Stephanie’s recommendations to the U.S. Commission on Long Term Care, August 2013. 

Click here for a list of submissions from Stakeholders and the General Public to the LTCC


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