The Longest Road: Health Care Reform and Access to Long-Term Care

My Journey into Long-Term Care

A lot of people call my dad a hero. I have been known to be one of them. But that belies the circumstances that pushed him into turning his home into a nursing home so that he could help care for my mom during her decades of slow decline due to multiple sclerosis.  He can only continue to cobble together her care because he has the means to pay for it himself. Yes, she has a devastating disease that has robbed her of the ability to walk, dress herself, control her bodily functions, feed herself, speak more than a few garbled words—on a good day. But you don’t go to the doctor for those problems. She must be lifted, dressed, bathed, fed. This is the care (i.e., paid caregivers) she needs. But it is not medical and thus not “health care.” It’s something called palliative care, or assistance with daily living, or most commonly “long-term care” (LTC).  About seven in 10 Americans are expected to need it during their lifetime.

Unfortunately, about 44% of Americans age 40 or older mistakenly believe their existing health insurance or Medicare will take care of LTC. I started working on health care reform as a grad student in public health school back in 1984. By the time the Affordable Care Act (ACA) came around, I was excited, but I had also been around the block.  Before President Obama was elected, I worked with a volunteer advisory group for the National Multiple Sclerosis Society to develop a set of health care reform principles very early in the national policy discussion process to help the disability community have a place at the policy table.

ACA Health Care Reform, A Small Milestone

When the ACA became law, some of the biggest wins for people with chronic illness or disability were the elimination of discrimination based on a pre-existing condition. This alone had previously rendered millions of people uninsurable on the individual health insurance market. Elimination of lifetime coverage caps on certain services or body parts, and capping copayments for covered services are all tremendously helpful for those who faced no coverage or high out-of-pocket costs before Obamacare was implemented. Sadly, even the mini long-term care trial balloon called the CLASS Act was removed from the ACA, causing public financing of LTC to become a policy pariah.

The upshot is, if you need care that goes beyond what is “medically-necessary,” you are likely still waiting for coverage relief.

A Primer on LTC Costs and US Policy Milestones/Stalemates to Date

LTC reform may well be one of the toughest nuts to crack in health policy. Long-term care is complex. And while it may be more cost effective to offer a mix of community-based options (e.g., adult day health, home care, meals preparation, paratransit, and home modifications–like wheel chair ramps) rather than forcing individuals into nursing homes, it will still likely be costly. The US Department of Health and Human Services estimates home care services at $32,000-$56,000 per year, depending on where you live. A recent NPR expose on worker compensation systems reported that many states fail to provide enough funding to compensate permanently injured workers to cover long-term care assistance.

A much touted Supreme Court decision (Olmstead) promising that an individual does indeed have the right to receive long-term care in the “least restrictive setting.” The ruling is sparingly enforced since no funding was made available to build an infrastructure of community-based support services that can realistically substitute for institutional care.

Private LTC insurance is an option only for those who realize they don’t have already this type coverage and can afford it. LTC insurance can be quite costly, and becomes more so the older you are when you purchase. Policies are unavailable to those who do not meet health screening eligibility criteria. Private LTC insurance is also a “buyer beware” product, where it’s important to understand plan restrictions on the type(s) of care covered, and how functionally-disabled you must be to qualify for any services. That being said, it may be the best available option for those who can pay for and understand it.

Choose a Road and Aim for Change

I have spent many hours arguing with idealists about whether supporting the ACA was wrong, given that it does not lead to a single-payer system with evidence-based cost controls and universal access. However, I believe it is important to be pragmatic. Ironically, it may be the incredible complexity of LTC that allows us to chip away at it while we wait for a better opening for a bigger change.

When the momentum comes, coalitions of disability, a growing proportion of seniors, chronic disease organizations, veterans, and their families, as well as compassionate health professionals will be a voice to be heard.  Personally, I would start with a “long-term care wish list” dividing issues by perceived feasibility. Here’s a sample to start the conversation.

  • Easier: seek tax credits for home modifications, paratransit, purchasing LTC insurance, or other tangible services
  • Medium: Maybe not easy, but expect to see some gains at the state level, if the right coalitions come together. Expand eligibility for home care and adult day health care, allow payment on a sliding fee schedule, subsidies or cost caps to protect consumers. Fund family paid work leave, caregiver periodic and emergency respite services.
  • Difficult: seek affordable coverage for “assistance with daily living” under the ACA, Medicare, and private insurance as an “essential benefit.” Build an infrastructure of home and community-based LTC services that would allow the Olmstead decision to be fully implemented.

Recommended Reading and Additional Resources


This blog was authored by SurroundHealth member and community contributor, Tammy Pilisuk, MPH.

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