Patrick Kennedy: Part 1: We Can Fix Mental Health Care If We Build Power

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one story at a time. Time. Hi, I'm Tony Mantor.
Welcome to Why Not Me? Embracing Autism and Mental Health Worldwide.
Welcome to our special event, Crafting justice, empowering autism and
mental health through legislation. Joining us today is Patrick Kennedy,
former US Congressman and passionate advocate for mental health reform.
With a legacy of groundbreaking legislation, including the Mental Health
Parity and Addiction Equity Act, he has reshaped how we
address mental health and addiction in America. He joins us
as he shares his personal journey, the challenges of pushing
for systemic change, and why mental health advocacy is more
critical now than ever. Thanks for joining us today.
Thank you. I appreciate you having me on.
Oh it's my pleasure. So let's start off with this.
As the lead sponsor of the Mental Health Parity and
Addiction Equity Act of two thousand and eight, what do
you see as the most significant barriers to its full implementation?
Well, first, you know, there's two different approaches to dressing
the problem. You know, one is punitive. You create a
liability that forces payers to react and try to cover
their liability by doing you know, what is required by law.
The other is to incentivize the actors IE insurance which
includes the federal government or CMS is the biggest insurer
of all, to do the right thing, not through a
stick approach, but because it's in their self interest from
the dvantage point of paying for itself. It's financially, it's
their foot share. Responsibility would be to do this because
it's been demonstrated to be more cost effective par The
reason why we need to do the kind of stick approach,
the punitive federal lawmaking and regulating approach to make players
do something that is not in their financial interest is
because we have set up a paradigm where it's not
in their financial interest, i e. If they make their
profits on a year in, year out basis, it's never
gonna be an investment that they get a return on.
But if the payment and insurance system was able to
capture the value of paying for the right mental health
interventions at the right time for the right person, then
they would be doing it all day long, every day
of the week, and twice on Sunday. They wouldn't need
the Federal Mental Health Parity and Addiction Equity Act to
tell them to do it, because they're all about their
own fiduciary. And if their own fiduciary says you gotta
do it because it's less expensive, there's a bigger return
on the investment, they would do it. So part of
the thing is I feel like we're pushing the bowler
up the hill. Because the insurance industry is enormously powerful.
They've got a lot of you know, obviously lobbing power
in DC and influence across the country.
That seems like a huge bridge to cross. So what's
the next step.
Kind of try to do battle with them when you're
representing consumers you know, across the board, whether it's the
IDD community, the SUD community, the SMI community, who by
their very definition are overwhelmed, you know, both by their illness,
which compromises their advocacy as self advocates and their families
advocacy because they're so busy trying to take care of
their loved ones. The notion that they're going to be
engaged in a legal process to enforce you know, the
law that was written to protect them, and as you know,
that's the where the rub is. It's you need enforcement
because otherwise the law is meaningless unless it's got teeth,
unless it's got enforcement. So it's a of a challenge
to pass the law because the insurance industry will create
you know, levers to mitigate the impact of the law
itself in terms of its definition. But then there'll be
another layer that will mitigate the law's impact on them,
and that's the regulatory bird. And then of course, and
then there's the legal appeals process. So like on all three,
you're fighting the most powerful industry in the country, which
you're going to lose, lose, lose.
So what steps do we need to take so that
this becomes a winnable situation.
So the idea that we're going to be able to
win in that environment is going to be determined by
how effectively we can advocate. Now, I'm not saying that,
you know, we can't speak truth to power and fight
power with political process that's been done from the beginning
of time. I mean, you know, you have the industrial
Revolution and then you have the labor movement. The labor
movement was a reaction to the industrial Revolution, which exploited
people and put them in these factories and had kids
in these factories and had unsafe working conditions, and the
American people said, no, you're gonna have to negotiate. We're
going to create this thing called unions. You're gonna have
to negotiate with You're it's going to give people power
to have labor be represented at the bargaining table so
that you can protect that other aspect.
So where do you think we stand with everything that
you're seeing now moving forward with what we're trying to do,
We're nowhere.
Near that point of realization where we need to organize
politically to create the political power like the unions did
to speak up on behalf of our community because, as
I said, for a lot of reasons, and on the
least of which is stigma, shame, the continued stereotypes and
implicit biases that relegate these illnesses to people's moral judgments
on a person because of their illness. So we've got
a lot of challenges to get organized politically, and we
got a lot of challenges to get organized legislatively, regulatorily,
and legally. So basically I've shown you that this is
the rock of Sisyphus. You know, you could just keep
pushing this up the mountain, it's going to roll back
down on us because we just don't have the power
on all of those levels. That's not to say we
don't need to work on creating that power. If I
had any number of dollars from the world, well, the
United States is four hundred and seventy eight billionaires, if
they which, of course all of us have mental health
and addiction issues in our families.
Yeah, so if you could tell them one thing that
would help all this, what would you tell them?
If any of them put their money behind this, I
would tell them, first thing we need to do is
create the political power, because you're going to have all
the ideas in the world, but it's not going to
work if you don't align the political power to you know,
be institutionalized, meaning anyone running for office has to be
doing the right thing because they know that a third
of their constituency, half of their constituency, two thirds of
their constituency has signed on to these basic principles and
as such, you know, basically had embedded those principles into
policy and into law and into regulation. So the bottom
line is, we just don't have that, but we can
get it. Like I am convinced, as a former elected
official who has run plenty of political campaigns, you could
put a political campaign together that would make this the
most powerful special interest in the country, no doubt. In
my mind, this is the most powerful because it's the
most personal to every single family in America. And when
it's personal in this regard in a way that frankly
I think supersedes most other quote special interests in terms
of the power of this as an existential personal issue
for the families involved, then we could smash through any
barrier in our way and get what's best for our families.
So that's one approach, But as I said, the other
approach is, which may be easier depends, is to try
to do the impossible, which is to create a new
financial system which acknowledges the value, the financial value, not
the moral, not the human, not the altruistic benefit of
good mental health interventions, the financial benefit of good mental health.
And if you did that, and you constructed an insurance
history that competes over who's got less liability across a
longer period of time, then they'll say, well, if I
own these patients and the risk that comes with them,
I'm going to do whatever I need to do to
manage that risk, meaning minimize my lif liability, my exposure
to pay more money for that risk than I need to.
Well, that said, what does this whole process entail.
What do I need to do? Well, I need to
do this early intervention, I need to do preemptive this,
I need to put in chronic care management that I
need to do all these other things, which by the way,
may include paying for things that aren't necessarily clinical and medical,
because a lot of what we need, which frankly the
parody law has been helpful to do, is to pay
for those social services, those human services, those housing services,
that frankly get us better clinical outcomes than another pill
and another kind of medical intervention. So what would decide
that is not me coming to Congress with the law
and say you must cover, you know, sober housing for
people with addiction, because we know it's so much more
effective than paying for a whole life more rehabs in
terms of the longevity of people's sobriety and the stability
for them in their lives in tackling a very chronic
and insidious illness. If you've got stable housing and supportive
housing and by the way, recovery community organizations, by the way,
all of which cost a whole lot less than our
current medical paradigm to address addiction. You know what, I
wouldn't have to scream at the top of my lungs
for the payers to do this, because they'd be saying, oh,
that's cost less than the current model of continuing to
cycle people in and out of detoxes and emergency rooms.
And by the way, when you add the cost of
our criminal justice system to that, this thing is not
even a close call. So I guess what I'm saying
in an overarching way is that there are a lot
of things that we've got to do. All I want
anyone to know is that we know what they are
and we do them. It's a matter of political will.
Can you expand on that political will and how you see.
It at political will is not just directed to Congress
and the regulators. That political will can be amongst the payers,
influence the payers. They can be political will to force
the employers to use their power as the major payers.
They are the payers. The insurance industry is really taking
orders from the people that write their checks, which you know,
of course, the employers. And if the employers say, god,
this is crazy the way our premiums are going up
every year, and all we get is they're managing the
chairs on the Titanic, and can't these insurance companies come
up with a better mouse trap here? This is just silly,
And they might at some point break and say, God,
I can't be cutting benefits. I'm not going to get
the employees I want. They're not going to be healthy
the way I want. Their families are not going to
be healthy, which means they're not going to be present
on the job as productive employees if I don't address this.
And the way to address this is not to ratchet
down on what's covered. The way to address this is
to pay for what works and benefit from those interventions.
That ultimately is another political route. And of course most
people think politics, they think my member of Congress, my governor,
m elected. There is another political power, which is, you know,
the payers. And by that I don't mean just the insurers.
I mean the people they work for, which is the
major employers. And it turned the investors investor community.
So yes, that makes total sense. Your call for a
ninety ninety ninety goal by twenty thirty three, can you
explain to our audience what the ninety ninety ninety is
and what legislative policy or framework do you think that's
essential to achieving this target.
So you know, one thing I noticed, after you know,
thirty years of advocating for mental health and addiction, is
that we as a community, we'ren organized. Going back to
my point that we need an afl CIO And if
you're a Republican, you need a chain Chamber of commerce
or a league of conservation voters. If you're an environmentalist,
meaning we need to get our act together because we're
not organized. And if you're not organized, you don't pack
a punch you up no power because you're operating on
fifteen different advocacy points as opposed to one, and you
diminish our collective power. And so one thing I thought
we needed to do is in order to coalesce everyone,
we need to coalesce both the psychiatrists, the psychologists, the
mental illness community, the addiction committey, which are, by the way,
is siloed. And you needed to also frame what everybody
is for so that we can get everybody on the
same sheet of music. And what I did was just say, hey,
what has worked in other major public health challenges that
are stigmatized, And I look back the most notable as
HIV eights And when they were beginning their fight, they said,
you know what, within ten years, we want ninety cent
of American screen for HIV. We want the best interventions
that are evidence based to be uniformally and universally prescribed
as protocols that are common, not patchwork wilt. We want
everybody that's evidence based, and we want ninety percent to
be able to live with this condition, even if it's
a chronic condition, for the rest of their lives, with
stability and health, you know, absence of disability. That was
HIV eights and guess what, we can use that same model.
We want ninety percent of American screen for mental illnesses,
for addiction, for intellectual developmental disabilities. Why is that so
outrageous to say we do it for cancer, We do
it for cardiovascer disease, we do it for is sight, hearing, scoliosis, everything,
but we don't do it for the brain. It makes
no sense whatsoever.
Yes, if you look at HIV AIDS, that was what
forty years ago. So with all the technology and all
the information that we've got now, there is no reason
why we shouldn't be doing a lot more for those
with serious mental illness.
We can do it today because you know, the old
tools of having twenty five pieces of paper fill out
fifteen hundred different questions in order to screen someone. Those
days are gone. We're now in the world of AI
and technology. There's so many ways that we can now
triage and identify who has what they need in a
way that automatically not only can help us screen more
effectively for who's got what and how to best treat them,
but that diagnostic tool algorithm is going to frankly also
give us what's the algorithm that's going to produce the
best results for that person with that level of disability,
that risk profile, that diagnosis, what's going to produce the
best outcomes for them? In other words, bringing kind of
evidence space evidence being what works and shown to work
in terms of producing the best outcomes that can be
done in no time. And then the final thing is
you know, supported in recovery. That's going to take a
revamping again as I said on the payment paradigm of
paying for longer term outcomes. That's going to result in
how do we build which we don't have a recovery
kind of model of care in this country where we
pay for the support of housing, the support of community organizations,
the you know, the peer supports all of those things,
which whether you have an IDD, whether you have you know,
addiction or an SMI, you we all need the same things.
And frankly, this is an opportunity for us to circle
the wagons so that we're all not fighting our own battles.
But frankly, whether you have parking sins or down syndrome
or autism where you have schizophrenic alcoholism, other forms of
you know what, we all need support of housing to
varying degrees. We all need recovery, community organizations to varying degrees.
We all need each other. And if that was the frame,
then we would be going to the hill and we'd
be going to other places of power to influence together
rather than separately. And if we went together, we'd be
a lot more effective.
That is so true. How many times have we heard
that there's strength in numbers. Now, let's go back in
time a little. It's always said that we can learn
by our history, learn by our mistakes, then use that
to change things so that we can grow. So let's
reflect on the Community Mental Health Act of nineteen sixty three,
signed by your uncle, John F. Kennedy. What lessons do
you think we can learn from its partial implaumnation to
better fund and sustain community based mental health care today.
Well, he had the paradigm back in nineteen sixty three
when he signed that bill, which was the last bill
he signed. And part of the reason it ever was
realized is that it was the last Billy signed, and
then he was assassinated. And then when the Congress took
up the creation of Medicare, and we built the Medicare
and Medicaid system into law in nineteen sixty five, there
was a decision to separate people with intellectual disabilities from
people with effective disorders, so again the dividing of our community.
And so what ended up happening is we did create
this whole group home, community based support of infrastructure for
people with you know, IDD, as imperfect as it was,
it was created in kind of consistent with A. Kennedy's vision.
But what wasn't done is that was not replicated with
people with schizophrenia and bipolar and frankly in a like
minded way, but probably in a differentiated way, but in
the same manner people with SUD substance ute disorders. So
all three separated groups, all, as I just mention, need
the same things. They need independent living, which involves both
not only the clinical, but the social and the spiritual,
which is, you know, the human connection and the vitality
and the purpose, all of which comes from support of
employment and community engagement. So that and that matters for
someone in recovery from addiction, just like it matters for
someone in recovery from schizophrenia, like it matters for someone
who has a developmental disability and has been barred from
participating in our economic system and our society.
A lot of things that you just brought up are very,
very valid. I'm willing to bet that a lot of
people do not realize that some of the issues that
you just brought up are things that people have to
live with on a day to day basis. With that said,
what are some of the things that we can do
to make this a better situation for our communities?
So integration and connectedness is the key for all of
those communities. So John F. Kennedy got it when he
said people with intellectual envelopmental disabilities and I think in
turn people with severe mental illness and SGUD. If I
were to add modernized version of what he said, he
said need no longer be alien to our affections, which
is so beautifully put, because we're still dealing with the
alienation and marginalization of all of these communities. Or he
said beyond the help of our communities. Now that's really
profound because he did say beyond the help of our
pharmaceutical companies. Although we need better therapies, beyond the help
of our psychiatric hospitals. Yeah, we need more beds, you know,
we need We're beyond the help of our psychiatrists or psychologists. Frankly,
we need more of those. But he said communities, So
he wasn't just talking about these different kind of trade groups,
you know, therapeutic intervention sheets. He was talking about the
whole nature of community, which means everybody has a stake
in this. You know, the people who were you care
about housing of people, care about employment. This is about everything.
And that was profound and we still haven't gotten that
message as we're still grappling with the fact that these
conditions aren't just satisfied by some bureaucratic infrastructure and reimbursement
model through the medical system. We've over medicalized the solution.
It involves a much broader comprehension of what is important
to people, regardless of what their particular challenge is. They're
all people. We're all people or human beings. We need
that totality, and if you're denying people, you know, social
connection and supports whatever the challenge is, you're not going
to be able to be successful. So that was where
JFK community mental health fact really was so powerful, and
unfortunately didn't survive him the way we should. You know,
looking back on it, we hoped.
Well, this has been an incredibly engaging and insightful conversation,
covering so much ground that I've decided to turn it
into a two part series. I'm going to wrap it
up here and pick it back up tomorrow. Thank you
so much for your time in diving deep with us.
Your input has given us more than enough to create
to compel episodes.
I really appreciate here offering me a chance to just
repeat what I've heard from a lot of really smart
people and knowledgeable people. And it's the benefit that I've
been given by dent to my family and experience in
life that I get to hear all of these different
perspectives and formulate them. And I think I have an
opportunity to kind of help formulate and crystallize them and
give other people the benefit of the insights that have
been given to me because I've got all these people
channeling these ideas into my brain.
I think you're being a little modest there, but I
really appreciate this and will continue this tomorrow.
Well, we ought to keep going. Thank you so much, Tony.
It's been my pleasure. Thanks again, thanks for taking time
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