Whatever Happened to Long-Term Care Reform?

From the Trenches: A Prescription for Change

I have enjoyed looking at the pictures of protestors being arrested in our nation’s capital. I concur with many commentators who credit the civil disobedience of the protestors – many of whom are members of the disability rights activist group ADAPT – with the defeat of the Senate bill to abolish the Affordable Care Act. It’s also been fun because I know so many people in the photos.


The Affordable Care Act was a massive piece of legislation. The complexities and moving parts are best understood by people who have very closely followed or implemented the law. I generally think of the ACA as three things:


1. Reform of the private insurance market with the goal of providing greater access to insurance coverage;

2. Changes to Medicare, such as closing the prescription drug donut hole; and

3. Changes to Medicaid. 

Mike Oxford, Executive Director for Policy at the Topeka Independent Living Resource Center and a member of the national chapter of ADAPT, was one of many who protested against the Senate bill to repeal the Affordable Care Act.

Community Services Optional?

The Medicaid issue that has drawn the most attention is the matter of expanding access, appropriately called “Medicaid expansion.” But the law contains other Medicaid provisions as well. It provides incentives for states to continue to “re-balance” their systems of providing long-term care. “Re-balance” is often mentioned in quotation marks because states were never in balance. Nonetheless, through the ACA, states were provided additional federal matching funds if they would transfer more long-term care to community services and away from institutions, such as nursing homes.


That is the crux of the protest. People with disabilities and older adults do not want to return to the days of being sent to nursing homes as the only way to receive long-term care. The right to live in the community is worth a fight, and even arrest. Under federal law, when a person needs long-term care paid for by Medicaid, federal law guarantees access to a nursing home. Both the House and Senate ACA repeal legislation would reform Medicaid by converting it to a block grant program. States would ultimately manage the entire cost of Medicaid and would come under increasing financial pressure to eliminate optional services. Community services are optional. As are some of the categories of people who receive Medicaid for nursing home care. The end-result of eliminating services and/or categories of people would drastically reshape provision of long-term care.

Voluntary Program Not Viable

We need a public debate about long-term care reform. The ACA was many things but long-term care reform is not among them. Not really. Not as the law has been implemented. This I know. I was squarely in the middle of the sole provision of the ACA that addressed long-term care. That part of the law – Title VIII known as the Community Living Assistance Services and Supports Act (CLASS) – didn’t work. It wasn’t implemented and was eventually repealed.


CLASS created a limited-benefit long-term care insurance program. Advocates for older adults and people with disabilities fought very hard to have CLASS included in the ACA. They had a large and active coalition comprised of individuals and organizations. The principle that unified the spectrum of aging and disability advocates was the goal of providing long-term care in community.


The program, as designed, would have allowed individuals to purchase modest long-term care insurance coverage, administered by the federal government. The benefits would not have been sufficient to cover all long-term care costs, but it would have provided modest financial assistance to help people remain in community as they age and/or live with disability. As designed, it had an insurance benefit equivalent to about one-third of private long-term care insurance.


It didn’t work because it was voluntary. The people for whom the program was designed would have been interested in enrolling. People who currently need long-term care or think they will need it are more likely to purchase limited-benefit coverage. Even with the five-year waiting period required by law, the program would have suffered severe adverse selection. Actuarially the program was not viable.

Worst Day of My Career

Part of the controversy of the ACA is the matter of mandating participation. Only if everyone participates will the risk be spread sufficiently to support affordable premiums. For the private market the ACA mandated enrollment. For CLASS it was voluntary. In this fundamental way, the federal law took opposite approaches to health insurance coverage and long-term care coverage. Because the CLASS program could not be solvent, the Obama administration notified Congress it would not implement that portion of the ACA. In response, the House Energy & Commerce Committee held a public hearing. A federal official had to appear before the committee to explain why the program wouldn’t work and why the administration was not moving forward. That official was me. I spent 18 months serving as the administrator of the CLASS program.


The most difficult thing I have had to do in my career is recommend we not implement the long-term care program that would have helped tens of thousands of people who need long-term assistance and support. My anguish in breaking this news to the stakeholders paled in comparison to their dashed hopes of federal support for this much-needed and hard-fought program. In the wake of our decision to halt implementation, Congress repealed the law.

Time to Start Over

It is time to start over. For stakeholders who focus on long-term care, myself included, the ACA was insufficient. It did not tackle the thorny issues that underlie how we pay for and deliver support to people who need assistance with basic functions such as eating, bathing, dressing, toileting, transferring and maintaining continence. The so-called activities of daily living. These are the elements of long-term care. Most of us will face one or more of these challenges in the future. When we need that type of help, each of us will face the cost. This type of assistance is not covered by Medicare. This type of assistance can be provided either at home or in a congregate setting. This type of assistance is exorbitant. For these multiple reasons, Medicaid is the single largest payer for long-term care. And Medicaid block grants are a threat.


The entitlement programs in this country are a tremendous drain on federal and state budgets. Financial and political pressures will continue to thrust us into the maelstrom of reform. As we tackle changes in the Medicaid program, it is essential we begin by looking at the people it serves. The highest costs in the program are in long-term care. The people driving those costs are older people and people with disabilities. The very people being arrested this past month. I know firsthand these vocal advocates welcome the opportunity to talk about reform. But the conversation they seek is not primarily about Medicaid expansion. They are demanding we confront long-term care.

Necessary Decoupling

They are right. In the national campaign to either repair or replace the ACA, it is fundamentally unfair to make sweeping changes to Medicaid long-term care policy without public debate. Let’s give long-term care the forum it deserves. Changing long-term care financing will require laser-like focus on that topic alone. It cannot be adequately reformed by polarized politics reaching for other parts of the law. Long-term care reform is needed. By itself. Alone. Stripped of the distraction of the rest of the law.


Until we decouple long-term care financing from ACA reform we will be under constant threat. Not from the activists willing to lay their bodies on the line. But from the threat of losing the program we may need as our bodies themselves fail. The people who understand this most are those people – my friends – in wheelchairs you are watching on the news.



Kathy Greenlee is the Vice President for Aging and Health Policy at the Center for Practical Bioethics. She previously served as the U.S. Assistant Secretary for Aging and Administrator of the Administration for Community Living from 2009 to 2016.