‘We don’t pay for cancer through grant programs – why mental health?’

Three weeks before he was assassinated, President John F. Kennedy signed into law a bill he had pushed for, the Community Mental Health Act of 1963, that provided funding for the creation of community mental health centers across the country as an alternative to institutional care.

“The mentally ill and the mentally retarded need no longer be alien to our affections or beyond the help of our communities,” Kennedy said at the time.

The promise of that bill was never realized. He was gunned down the next month and focus shifted to other issues – the expanding War in Vietnam, the civil rights movement, urban unrest. The federal Medicare and Medicaid insurance programs, created in 1965, did little to provide mental health care.

Sixty years later, Kennedy’s nephew, Patrick J. Kennedy, a former Congressman from Rhode Island, wants to reignite a movement to transform the fractured mental health system in the U.S. – and make prevention, care, and support available to all. Last week at the John F. Kennedy Library in Boston, he kicked off a two-day meeting of a coalition of mental health advocates and providers dubbed the Alignment for Progress.

“We have not seen a moment like this, since my uncle first signed the Community Mental Health Act,” Kennedy said in his opening speech. “This is a moment we cannot waste. We paid too big a price during COVID. We’ve lost too many people both to that pandemic and the aftermath of that pandemic… [from] increasing suicide rates and overdose rates, and homelessness, and disability. We need to move now.” (Note: Kennedy is a member of the MindSite News editorial advisory board.)

The Alignment announced an ambitious “90/90/90 goal”: to ensure that by 2033 90% of people will be screened for mental health and substance use disorders, that 90% of those will get appropriate services and, because of that support, 90% of people treated will be able to manage their symptoms.

At the meeting, the Kennedy Forum, the mental health advocacy group that Kennedy founded 10 years ago, released a national strategy document – a set of policy proposals – to advance this agenda.

I attended the meeting and afterward spoke with David Lloyd, the Forum’s chief policy officer and one of the architects of the national plan. Shortly before the meeting, Lloyd announced that he was stepping down from that position to take a break after six years of intense work. Our conversation has been edited for space and clarity.

Kennedy Forum Chief Policy Officer David Lloyd, left, gets a sendoff from Patrick Kennedy. Lloyd is leaving the Forum later this year after six years. Photo: Ronald Flores, courtesy Kennedy Forum.

An Interview with David Lloyd

Rob Waters: Let’s start with a little context on where we are today. What would you say is the state of mental health policy in terms of access, availability, equity and quality in the US now?

David Lloyd: We’re in the middle of a mental health and addiction crisis in this country, that the pandemic really poured fuel on. Now is the time for stakeholders to align: How do we change the system to prioritize prevention, intervene early, and give people the treatment they need, both to address the crisis before us, but also to ensure that people can be mentally healthy and live rich and fulfilling lives. How do we align to change what has been a very fragmented system that doesn’t work very well? The Alignment for Progress is all about aligning various stakeholders to make progress because no organization on its own is going to be able to solve this. We need payers at the table, we provide this at the table, people with lived experience and peers, all working together to try and change the system in a way that that serves millions of Americans across the country who need services.

You were one of the architects of the new strategy for creating change. Describe for me the key goals and elements of that strategy.

The challenges we face are not just with mental health care delivery, it’s also much further upstream, with housing, with environmental justice, social determinants of health. So, the Kennedy Forum and our partners put forward a comprehensive set of recommendations that federal policymakers can act upon. We’ve seen in the past that policymakers often don’t know what to do. A crisis comes up, people want to address it, and they create a new grant program that often doesn’t even have an appropriation that goes with it.

So a discretionary grant program means it’s a one-year or two-year kind of thing that doesn’t sustain?

That’s exactly right. When it’s just a discretionary grant program, it’s subject to the whims of funding and Congress. A press release will go out that says we got $20 million for a new grant program, but it’s not actually funded, it’s just permission to spend the funds in the future. We need meaningful solutions and that means more than just grant programs. In order to change the system, we need sustainable funding mechanisms that occur through health insurance coverage, through things like Medicaid and Medicare. Also funding streams to school districts across the country. All these things are important.

We don’t pay for cancer care, or diabetes or heart care through grant programs, we fund those services through health insurance that Americans have, either public coverage – Medicare or Medicaid – or commercial insurance. Funding for mental health and addiction should be no different. We’ve also focused on removing harmful, antiquated barriers within federal law, like a limitation in Medicare of 190 days of inpatient psychiatric treatment in someone’s lifetime. But people with disabilities can be on Medicare for decades, and many people run up against that.

During the pandemic, we increased access to care through telehealth, including for medications to treat opioid use disorder like buprenorphine. There have been proposals after the public health emergency ended to reinstate restrictions on telehealth prescribing of these medications so you could only get a certain amount via telehealth, and then you’d have to find an in-person provider. The problem is many parts of the country don’t have in-network providers available, particularly in rural areas. This would cut off access at a critical moment. We’ve made progress getting rid of the X-waiver for buprenorphine. We’ve made progress eliminating the ability of state and local governments to have their employees’ health plans out of the federal parity Act. And here’s a big one: Parity doesn’t apply to Medicare.

Say another word about that. A lot of people don’t know that parity laws don’t apply to Medicare.

Medicare covers adults 65 and older and younger individuals with disabilities. It has big gaps in services for mental health and substance use disorders. There are providers who are not covered under Medicare, and Medicare pays discriminatory rates. CMS recognized recently that Medicare rates undervalue mental health and substance use services. But all of this is written into the Social Security Act. So that Act needs to be amended to eliminate these gaps in coverage. We also need to make sure that the Parity Act applies to both traditional fee-for-service Medicare and Medicare Advantage plans. More and more benefits are being administered and carried out through Medicare Advantage plans run by brand-name insurers, and those should be subject to the Parity Act just like commercial insurance. There’s no excuse for any health plan across the country to not be covering the full continuum of care needed to treat mental health and substance use disorders. All of that should be subject to parity rules because it’s difficult to build an equitable system when you have inequities built into these programs.

Where are we now in this push for parity, to ensure that the full range of treatments for behavioral health conditions are covered by insurers just like physical health conditions? How far is there to go? And what are the big barriers that are impeding that progress?

We’re making progress, but it’s been too slow. The Biden administration has put forward proposed rules for the Federal Parity Act which have the potential to significantly strengthen the requirements that health plans have to follow, and ultimately, increase access to mental health and addiction care. The proposed regulations are out for comment right now, and the comment period closes Oct. 18. The intent of Congress was about ensuring equitable access, and the proposed regulations make that explicit. Plans will have to show – by collecting and analyzing data – that they actually are offering equitable access to mental health and addiction services, just like they are physical health. If there are disparities, they’ll have to take action to address them. If there is inequitable access to providers, plans can be held accountable.

We also have to strengthen the Affordable Care Act and its essential health benefits by making clear that key mental health and addiction services that aren’t covered right now have to be covered. An example of that is crisis services for mental health and substance use disorder which are really just emergency services. Health plans across the country are not covering mobile crisis response teams, which is the in-person response when someone’s having a mental health or addiction crisis.

To make an analogy, if somebody has a heart attack, and an ambulance goes out and brings them back to the hospital for treatment, that would be covered, right?

Exactly. Basically, every policy covers ambulance and emergency transport for physical health. But they don’t cover the same kind of response for behavioral health. That’s a parity issue. The same for things like early psychosis. Say you have a young person, 15 or 20 years old, experiencing symptoms of psychosis for the first time. The evidence-based treatment we’ve known about for a decade or more is Coordinated Specialty Care – but it’s not covered by any commercial insurers across the country. That is just astounding that policymakers have accepted this. We would never accept a kid being diagnosed with cancer or Type one diabetes, and simply saying, ‘Oh, yeah, the services that you need aren’t covered.’ No one would think that was acceptable. But that’s exactly what happens. It’s outrageous. Health plans are not covering coordinated specialty care, and it belies any claims that they’re serious about improving mental health and addiction coverage.

We should have an expectation that all health insurance coverage in this country covers all the levels of mental health and substance use disorder care, and, all the evidence-based treatments needed for these conditions.

What are some of the other recommendations in the plan?

We have recommendations for standards relating to cultural and linguistic competence among providers. We have an entire section on emergency and crisis response. And that includes criminal-legal system reforms and diverting people from incarceration. We have other recommendations relating to the social determinants of health. We have to move upstream. We can’t just be fighting this when someone is in crisis and their condition could have been prevented altogether if we’d intervened earlier. We have recommendations relating to housing and making sure that we’re eliminating local zoning barriers to permanent supportive housing – when someone attempts to build permanent supportive housing and local governments say, ‘No, you can’t build that here.’

To me, one of the themes of the conference was that these different issues – housing, homelessness, poverty, food, insecurity – everything connects to mental health.

There are huge drivers of poor mental health, things like economic insecurity and trauma, and poverty. The Child Tax Credit cut child poverty in half over the last couple of years, and then was allowed to expire. That should be restored. Allowing it to expire should be seen through a mental health lens. We need action relating to environmental justice because there’s enormous evidence that pollution has a direct negative effect on mental health. Kids and families living next to highways and in polluted areas – their mental health suffers for that. Climate change, increasing heat, lead poisoning — these things affect mental health, they’re associated with increased incidence of even things like schizophrenia.

I think one reason mental health policy is so bad is because people with mental illness don’t have political power. Is that what you’re trying to do here – build a lobby and power? 

Absolutely. There is a growing movement. People are beginning to speak out about their own experiences and their family’s experiences and become more active and push these issues. That’s why we’re starting to make progress. People are talking and sharing their stories. It’s also critical to be aligned. When you align and come to agreement on the most important things to be done, you can make a lot of a lot of progress. There’s a long way to go, and there needs to be an urgency about what we need to do right now. But I’m optimistic about the future.

Type of work:

Rob Waters, the founding editor of MindSite News, is an award-winning health and mental health journalist. He was a contributing writer to Health Affairs and has worked as a staff reporter or editor at...