How to Advocate for LTC Financing

Financing long-term supportive services must not be swept aside yet again. Advocates must create a drumbeat that demands attention and solutions, including federal catastrophic long-term care insurance.

I’m delighted you are among the folks willing to help raise long-term care financing to public and policymaker attention.  We need to generate the will to confront the issues and shape arrangements in the US so that most people can handle their own long-term care costs, and everyone can count on having the basics of a decent life in old age.  We’ll need a more sustained Social Security income system and more efficient and reliable local care arrangements, but we’ll also need more funds in savings and insurance, both public and private. Here are links to resources that will prove useful for your efforts to move long-term care financing onto the policy table.  Let me know of other resources you find or that you find that you need, and please suggest enhancements to these (

The WISH Act, H.R. 4289, with a section-by-section summary and a Powerpoint presentation

Very useful overview, Cohen M and Butler S, The Middle Ground For Fixing Long-Term Care Costs: The WISH Act

What we aim to accomplish –

  • First and foremost – to make the financing of long-term care into an inescapable policy issue – visible in election campaigns, often addressed in news media, and a topic that many organizations take up.
  • But also – to get multiple sponsors for the WISH Act (perhaps as modified and perhaps also other useful long-term care financing bills) in Congress
  • And to have employers, insurance companies, and organizations representing the interests of persons living with disabilities and older adults all actively supporting federal catastrophic long-term care insurance.

Comparing the WISH Act with the Withdrawn CLASS Act

Federal catastrophic long-term care insurance as proposed by the WISH Act is fiscally sound and quite different from the withdrawn CLASS Act.

Many influential advocates and legislators remember the CLASS Act, which was part of the Affordable Care Act in 2010. Advocates and political leaders had to put a great deal of effort into having the ACA include the CLASS insurance scheme to support people living with disabilities. The final law required that CLASS be fiscally neutral, but the fact that it would be voluntary led to estimates that only a few percent of the population would buy in, and that the group paying in would include a disproportionate number of people with high risks, including many already having disabling conditions. This made the premiums prohibitively expensive and the program unsustainable. Thus, the CLASS Act was never implemented and was repealed in 2013. The disappointments of advocates and legislators might lead them to ask how the WISH Act would be different. The most striking difference is that WISH would not be voluntary and thus would maintain the largest possible pool of contributors and beneficiaries, with no opportunity for the adverse selection that afflicted CLASS. The table below is meant to illuminate the array of differences.

DOMAINThe WISH Act proposalThe CLASS Act, withdrawn
Federal vs. State programFederalFederal
ParticipationMandatoryVoluntary (mandatory with opt out)
Eligible populationAll U.S.workersAnyone 18+ choosing to participate.  They also must receive wages or income that are subject to the Social Security tax and meet minimum work-quarter requirements, except for patients in a hospital or nursing facility, ICF/MR, IMD, or Medicaid beneficiary
Vesting requirementsFull benefits with 10 years contributing, partial down to 5 quartersContributed into the program for at least 5 years
Benefit eligibility triggersUses HIPAA triggersUses HIPAA triggers
Type and Amount of Benefit PaymentCash benefit paid monthly, roughly $120/day, indexed to inflation and wage costs in long-term careCash benefit paid monthly, TBD but roughly $50/day.  Might be based on degree of disability.  Benefit rolls over month to month but not beyond a calendar year.
Covered ServicesNot applicable because it is a cash benefitNot applicable because it is a cash benefit
Coverage Duration (front vs. back vs. comprehensive)Catastrophic/Back End, unlimited duration once disability trigger(s) are met and after an up-front waiting periodAs long as the qualifying disability lasts
Waiting Period Before Benefits BeginVaries from 1 year to 5 years, based on lifetime incomeNone
Premium estimate0.3% of wages from employee, matched by employer (or 0.6% for self-employed)Premium estimates averaged $123/month for a $75/day benefit, but the CMS actuaries later estimated $240/month. Premiums could have increased, except for older retirees.
Finance sourceMandatory premiums from payroll deductionsFinanced through monthly premiums paid by voluntary payroll deductions
Opportunity for private market supplementFront-end coverage with private LTCI and caregiver support programs easily fit and carriers would be relieved of most of the “tail” riskLTC insurance could “top off” CLASS coverage or continue to sell to individuals who opt-out and pass underwriting.
Coordination with other programsIncome from WISH would not count against eligibility for other federal programs, but income from WISH could mitigate the level of benefits for low-income programs such as Medicaid nursing home care.Eligibility for CLASS program benefits would have no effect on eligibility for Medicaid, Medicare, Social Security retirement, survivors, or disability benefits or Supplemental Security Income (SSI) benefits.  Medicaid is the payer of last resort where there is duplication but enrollees can retain a small portion of their CLASS cash benefit when both payment sources apply.
Inflation ProtectionAdjusted for inflation and direct service worker wages.Adjusted for inflation but details not specified.
Comparison of the WISH Act proposed with the CLASS Act, which was withdrawn.

Since a decade has passed since the enactment and withdrawal of CLASS, advocates for federal catastrophic long-term care insurance should generally use this comparison only with people for whom the effort and disappointment of CLASS are still salient, and who ask about the merits of the WISH Act in comparison.

Financing ElderCare: The WISH Act HR 4289

This short summary illustrates why the U.S. needs federal catastrophic long-term care insurance and how the WISH Act would meet the need.


  • Average Americans have no way to save, insure, or provide for the costs of supportive care while disabled in our last years.
  • Eldercare causes most spending down to poverty and relying on Medicaid in old age, and family caregivers often lose their own retirement security.
  • The average elder needs supportive services for 2 years, 1 in 7 of us will need more than 5 years.
  • Change is needed now, since current challenges will be dwarfed by nearly doubling the affected population within a decade.

Federal Catastrophic Long-term Care Insurance – the WISH Act, HR4289

  • Federal because elders move from state to state, and catastrophic costs require a large pool of funds
  • Catastrophic because then people can make their own plans for the first period of disability, confident of financial help if the period of disability becomes long
  • Catastrophe varies with different opportunities to save – well-off people can manage a longer period before needing the support of a public insurance plan
  • Long-term care (LTC) here focuses on a period when the person cannot take care of daily tasks without help – either paid or unpaid help is needed every day
  • Insurance because the need for long-term care in old age is both unpredictable and quite varied. Some need many years of around-the-clock care, while a few die suddenly with no long-term care need – but no one can predict.  This is by far the most substantial threat to most family’s finances, making it very desirable to be part of a large insurance pool.

Some Specifics about the proposed WISH Act, HR 4289

  • Fully paid for by a payroll tax of 0.6%, split between employee and employer
  • Cash benefit of about $120/day, tied to inflation, enough for about 6 hours of paid help, including paying family
  • Triggered by cognitive disability requiring constant supervision or functional disability of two or more activities of daily living (which is the HIPAA standard used by LTC insurance)
  • Requires a waiting period of 1 to 5 years living with disability, depending upon lifetime earnings – 40% of the population with the lowest earnings wait one year, average Americans wait less than 2 years
  • Requires paying into the insurance for 10 years for full benefits
  • Creates a strong market for private long-term care insurance, since many workers will want to cover the waiting period
  • Greatly reduces reliance on Medicaid, avoiding substantial challenges for state budgets

Let’s make it possible for most Americans to pay for the supports needed in advanced age – Federal Catastrophic Long-term Care Insurance – the WISH Act

More Info  – for HR 4289, section-by-section, and a Powerpoint presentation 

for the fundamental research shaping the proposal  

for a succinct overview on long-term care financing options 

for an endorsement honoring the fiscal soundness of the proposal

How to Talk with a Member of Congress (or the Staff)

The following are several points that would be helpful as you cultivate relationships with your members of Congress both in the United States House of Representatives and the Senate. 

Call the Capitol Hill office rather than their district office. (but also call the district office if the Capitol Hill office staff says the Member will be local at a particular time and you can set up a meeting in person)

When calling your Senator or Representative’s Washington, D.C., office, you’ll speak with a member of their staff. Don’t expect to speak personally with your Senator or Representative.

Congressional staff work long hours—10 to 12 hour days are not uncommon—and have many demands and pressures on their time. Take the time before you call to craft a concise and compelling message.

Note on Staff:  Respect staff and do not disdain a staffer who is far younger than you.  They are the future of Capitol Hill and it is not uncommon for a junior level staffer to work their way up in a relatively short time to a senior position.  While it may difficult to visit with a Member of Congress at times, the staffer will generally brief the Representative / Senator in a thoughtful and comprehensive manner. 

Contacting Congress

U.S. House of Representatives:
* Telephone:  202-225-3121
* Website: 

U.S. Senate:
* Telephone:  202-224-3121
* Website:

Find your member of Congress and contact him or her:
Contact your Representative:
Contact your Senator:

Four Essential Tips for Calling Your Member of Congress


Know the issue you wish to discuss, your goal or the action you want the legislator to take. Before calling, have your message written in front of you and review it carefully so you know exactly what you want to say. Include a few compelling facts to convince them to take action.

Identify Yourself & Ask for a Legislative Assistant

Identify yourself as a constituent. Briefly state your title and position if relevant.  Ask to speak with the legislative assistant responsible for the issue.

Keep the message simple and concise

A good model to follow is:

  • State the issue
  • Support with facts
  • State your goal: (such as asking the legislator’s support for a bill).
  • Be courteous.
  • Avoid emotional arguments, personal attacks, threats of political influence or demands.  Thank the staffer for taking your call and let him or her know how you will follow up.

Best Case Practices for Advocacy

  • Email your topic(s) in advance of a meeting with a staffer or legislator so they can adequately prepare ahead of time.
  • Avoid getting a meeting simply by walking into the office (or even just by calling).  Put the original request in written format – preferably an email.
  • Stick to one or two topics in any given meeting, rather than trying to cram in as many as you think time allows.  You’ll be taken more seriously if you are focused and able to prioritize.
  • Do not use the meeting time to discuss topics unrelated to the organization or field you are representing.  It may be tempting to mention your views on the most recent armed conflict or the latest free trade agreement while you’re there, but it won’t help.

How to Write Effective Op-Eds and Letters

Here are some tips on how to write effective op-eds and letters to the editor.

  • Title must be short and grab attention – but expect that editors may change it.
  • Put the heart of the argument in the first few sentences, even if you are going to then tell a brief story to get folks reading further.
  • In most publication settings now, there’s a tag line group of some sort – give some thought to what is currently trending on Twitter and other social media and be sure to use some of those terms.
  • Be brief.  Write two missives if you need to, rather than running long.  Most writing is now read on smartphones.  It’s hard to get folks to read to the end of anything longer than a couple hundred words.  Newspapers and professional-audience blogs will have guidelines that you can find on-line.  
  • Be sure to call for an action – call for raising the issues with an organization or with your Congressional or local representatives, for example.  You could even say, “Talk with your friends and family!”
  • Send your writing more than once, to more than one outlet – even if you don’t get published the first time, or at all, the editors will begin to realize that this is a rising issue and begin to pay attention.

More focused advice is available:

from Nicholas Kristof’s%20Office/communications_program/workshop-materials/ho_kristof_oped_10_16_17.pdf?campaign_id=39&emc=edit_ty_20220506&instance_id=60596&nl=opinion-today&regi_id=69021758&segment_id=91451&te=1&user_id=2823b860e971a3cb629533a386bebdda

and from Bret Stephens

NASEM Nursing Homes Report Could Spark Debate

The NASEM report on nursing homes could be the centerpiece of a far-reaching public information effort aimed to get LTSS issues into political campaigns.

Soon, the National Academies of Sciences, Engineering, and Medicine (NASEM) will issue their report on the future of nursing homes. If advocates for long-term care reforms sit back and observe, this is likely to join a lot of other responsible, thoughtful, evidence-based writings on shelves in libraries.  But it’s possible that we could make it one of the centerpieces of a broad-reaching public information effort aimed at making long-term supportive services (LTSS) a serious part of political campaigns upcoming.

Sure – this report will focus only on nursing homes, but that can be a very useful fulcrum for examining the overall arrangements for supporting how most of us will live with serious disability in old age.  We could take the recent article by McGarry and Grabowski (“Nursing Homes and COVID-19: A Crisis on Top of a Crisis”) as indicative of the sort of recommendations likely to come with the Academies report.  That paper listed ten reforms:

  1. Realigning Medicare and Medicaid (to make all payments equal the costs of care)
  2. Higher wages for direct care staff
  3. Minimum staffing requirements
  4. Increase financial and ownership transparency
  5. Regulatory reform (to focus on major risks and provide collaborative help to improve)
  6. Increase quality transparency (to include what residents and families care most about)
  7. Increase presence of clinicians onsite
  8. Alternative models of nursing home care (small homes)
  9. Increase use of home- and community-based services (HCBS)
  10. Long-term care financing (perhaps expanding Medicare or creating a new federal LTC benefit)

Let’s assume for the moment that the National Academy report makes basically these recommendations. I’d contend that they are basically good ideas. Two questions arise: (1) How will they get effectuated? And (2) What more needs to be on the policy agenda? 

Taking the second question first – one very important element that is missing is the context of long-term care – the community’s housing possibilities, the availability of direct care workers for home care, the flexibility of local employers to enable family caregiving, and so on.  Nursing home utilization and patterns of practice are profoundly entwined with the rest of the local care arrangements.  The report should call for reforms to extend beyond merely advocating for HCBS and should have taken into account the rest of the arrangements that affect long-term care. I’d suggest advocating for a substantial CMS demo on excellence in moderate-sized geographic populations. Let’s learn what can really work well for all of eldercare.

Now, the first question – what would make the public and its leadership take notice?  The proclivity of Americans to dodge questions of disability and old age is all too obvious.  Perhaps some of this head-in-the-sand behavior arises from a sense that there’s nothing to do – long-term care is tragic and troubling but also overwhelming.  To counter this sentiment, we need concrete actionable steps.  We need to get behind some specific fixes that are both understandable and motivating. Try these slogans:

“Make it possible to pay for your own old age” (and tie that to financing changes);

“A home for every elder” (and tie that to making homelessness in old age unacceptable);

“Long Term Care = LTC, Lots of Tender Caring” (and hook that to staffing levels);

“Fair Wage for Hard Work” (tied to a living wage for direct care workers).

How about a bumper sticker? “LT$$ – financing for our old age.” The WISH Act (HR 4289) could help with financing.

I’m sure readers can suggest more clever tag lines, but we need to pull them together and slam the social media with messages that push policy agendas and call on political leaders to take stands. 

Could you be ready to help make a Twitter and Facebook firestorm when the National Academy report comes out? And to follow up with emails to Congress and to heads of influential organizations?

WISH Act Can Fix LTC Financing

In addition to all the other reforms needed in eldercare, we need to set up social arrangements that make it possible for nearly all American workers to have a way to pay for long periods of long-term care.

In addition to all the other reforms needed in eldercare, we need to set up social arrangements that make it possible for nearly all American workers to have a way to pay for long periods of long-term care (LTC), which is the aim of the WISH Act, now H.R. 4289.  The WISH Act builds on the obvious strategy of pooling savings so that those among us who end up needing long periods of support get the needed finances – this is the core idea behind insurance for all our other risks (auto accident, home fires, floods, etc.).  Since people move among the states, a federal insurance scheme is best, so benefits are not tied to the location where you worked.

The cost of around-the-clock care by a single caregiver for a person who has no family volunteer is around $250,000 per year.  The cost of a nursing home is around half of that.  The cost of a direct care aide for 9 hours per day, 5 days per week is around $50,000 per year.  And whatever you need might last for a very long time.  I have had nursing home residents whose stays started 30 years before I showed up to be their physician.  One in seven people who live past 65 will need more than 5 years of long-term supportive care. 

At this point, salaries and benefits are not set up to make it possible to save to cover these costs.  Long-term care insurance is capped at 2 or 3 years or about $250,000 total, and the premium cost is both very high and likely to rise as you age.   Even family support (without compensation) is becoming challenging as working age women need to work, families are geographically dispersed, elders may have inappropriate housing and no good options for moving, few employers are flexible about caregiving absences, and the work itself is often more technical or difficult than available family members can handle.

Most working people can reasonably put together ways to finance the first year or two of long-term care, using savings, family help, reverse mortgages, and other resources.  So, the insurance should stay affordable by having a substantial waiting period, one that reflects the person’s lifetime opportunity to save.

Conveniently, such a plan has been worked out and sits in the House of Representatives as HR 4289, the WISH Act.  Benefits of around $120/day would arrive after a waiting period between 1 year (for 40% of the population) and 5 years (for the wealthiest).  The average American would start getting benefits in less than 2 years.  The insurance plan costs about 0.6% of wages if it is financed by a wage contribution like Social Security (half to employer, half to employee, and not capped).  It could be financed in other ways, but having the sense that one “owns” it, like Social Security, helps ensure that the public understands their long-term care risks and the coverage they are buying. The WISH Act would save many Americans from poverty in old age, bring needed funds into eldercare, and cut around 25% from the projected costs of Medicaid.

More info?  Ready to advocate?  Be in touch –


Suozzi introduces legislation to transform American eldercare, create federal long-term care insurance (Press release and links to the WISH Act bill, one-page description, and section-by-section)

Cohen M, Feder J, Favreault M. A New Public-Private Partnership:
Catastrophic Public and Front-End Private LTC Insurance

Giese C, Schmitz A, Brown K, Gunnlaugsson A (Milliman), Setting the Stage: A Journey on Public LTC Program Design 

Committee for a Responsible Federal Budget: Representative Suozzi Introduces the WISH Act

Thinking beyond Reconciliation 2021

Let’s start familiarizing policymakers about more difficult, more fundamental reforms

Most eldercare advocates in the United States are fully occupied pushing for effective allocations in the current reconciliation bill.  This activity offers the opportunity to plant the seeds of Long-Term Services and Supports (LTSS) reforms that are not yet likely – but are worthy and important.  So, yes, we need to argue strongly for Medicaid funds to increase pay and require benefits for direct care workers, and maybe we’ll even get a little funding for information infrastructure and some public education about long-term supports and services.  In addition, let’s start familiarizing policymakers about more difficult, more fundamental LTSS reforms – just to start getting these included in the policy discussions. It’s said that an adult has to hear a new idea a dozen times before they start to make it their own!

What seeds should we be planting?  I’d recommend serious work on financing for the long term, like the WISH Act. I’d recommend serious work on housing – let’s get affordable, disability-adapted, and services-connected housing widely available.  This will require tackling restrictive housing regulations, building back better after catastrophes, and integrating supported senior housing into communities.  I’d go for reforming congregate facilities of all sorts to be more home-like, smaller, and more often integrated into communities.

The categories that the United States uses for LTSS issues have created thoroughly dysfunctional silos, from the perspective of eldercare — medical care, behavioral care, custodial care, rehabilitation, community-based services, nursing homes, assisted living facilities, family care, personal care, homemakers, and so on.  What we need is to live in communities where eldercare has been anticipated and planned, since most older adults end up needing most of the services now in silos. So, we could be planting the seed of the idea of generating a local entity that has data, authority, and some finances to set priorities for improvement, implement improvements, and monitor the performance of eldercare locally.  At least, CMMI could sponsor a multi-year LTSS improvement trial in a couple dozen communities.  Let’s see just how much better eldercare could be – more reliable, more equitable, more supportive of older adults and their families!

Keywords: LTSS, advocacy, reconciliation