Patrick Kennedy on Autism,Mental Health, Addiction, and Political Change

Welcome to Why Not Me the World? Podcast hosted by
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Hopefully you gain more awareness, acceptance, and a better understanding
for autism around the world. Hi, I'm Tony Mantor. Welcome
to Why Not Me the World? Humanity of a Handcuffs
special event. Joining us today is Patrick Kennedy, a retired
American politician and mental health advocate. He was a Democratic
member of the United States House of Representatives who served
from nineteen ninety five to twenty eleven. As the youngest
son of Senator Ted Kennedy, a nephew of former US
President John F. Kennedy and former Senator Robert Kennedy, he
joins us to share his journey of becoming a mental
health advocate. We are honored to have him join us today.
Thanks for coming on.
Oh, thank you for having me.
It's my pleasure. You've written a lot of bills while
using the House. What kind of strategies went into formulating
those bills to try and get them passed. So the
outcome is, of course helping the people that needed it.
Was more driven out of first this general interest to
promote mental health and addiction. I instinctively knew that this
was a marginalized population, and I definitely think that my
having grown up in my family really sensitized me to that.
With my aunt starting special Olympics and with my dad's
work to try to build healthcare coverage, and in addition
to the Americans with Disability Act, we need something similar
to advocate for mental health and addiction. And of course
my own experience as a policymaker made me realize that
we had siloed the elements of an advocacy movement so
that everybody was defined by their diagnoses rather than defined
by their needs, which frankly overlapped whether you have autism, Parkinson's, Alzheimer's, addiction, schizophrenia, bipolar.
Ninety nine percent of our agenda, allman community based care
is really what should propel a more cohesive, organized, and
sophisticated effort to promote a new paradigm of delivery for
care that involves the community and social supports. So frankly,
do more for people with these illnesses than just purely
medical intervention, although the only way we pay for healthcare
today is through medical intervention. I have to say a
lot of growing up and watching my father in the
Senate and my own experience, really I think helped me
organize my thinking, which of course itself was influenced by
having read a lot about the civil rights movement, my
dad's work on disability and healthcare rights. That's how I
figured out this is an area that I want to
make a difference in because frankly, unlike a lot of
areas of society, this is not a well developed area
in terms of a level of sophistication that is required
to meet the current demands that our country has for
a much better effective mental health and addiction system. And
of course, I ran for office so many times, I
understand the basic calculus of how you get elected. And
my wife ran for Congress a couple of years ago,
and it really became super apparent to me how much
we are missing in this space. That she could get
one hundred bricklayers the day after tomorrow to show up somewhere,
but she couldn't get a hundred of anything on mental
health to do anything for her. On election day, she
had five thousand teachers all throughout the district holding signs
and passing out leaflets.
Yes, it's tough to get the support sometimes on something
that is just so important.
This is a bigger issue than any other issue in
the country. But we have no lists served, we have
no advocacy movement per se. That's what's really shape my
thinking about this is my own experience. And then of
course I have lived experienced someone who's dealt with addiction
and mental illness, both myself personally and within my family,
and I instinctively knew too that they're huge shame and stigma.
And of course, as I said, comparing that to historical
battles against institutionalized discrimination against minorities, was clear to me
that a lot of those implicit biases that you see
reflected in the way that we only pay women seventy
four cents of the dollar, or how people of color
are disproportionately represented in our criminal justice system. Mine there's
some obvious examples of how we have not made America
a whole in terms of the way it treats everybody,
regardless of sexual orientation, gender, so forth. I definitely knew
that this issue fit in that paradigm because people were marginalized.
There's no funding entrenched in the reimbursement system to take
care of these illnesses. It really is quite shocking when
you think this day and age, without all the new advocacy,
we wouldn't still be paying any attention to it. Frankly,
the tragic increase in suicide and overdose which is getting
some public attention just the last few years. So I
would say the political environment for these issues is dramatically
different than it was when I was in Congress.
When you was in Congress, you got several things done.
How did you go about accomplishing that?
When I was in Congress, I got the Parody Bill
passed because my dad is best friends with Chris Dodd,
and I grew up knowing Chris Dodd. And when we
tried to get the bill passed, Chris Dodd was chairman
of the Banking Committee, and I got Chris, with his
health and leadership, to include the Mental Health, Parody and
Addiction Equity Act into the bailout of the big banks, which,
as you recall in two thousand and eight, was a
must to save our economy. From going into another financial
great depression. It wasn't because mental health was a big
issue politically that we passed this parody law the honor
of co sponsoring with my Republican colleague Jim Ramstead. It
was through the back door, if you will, of this
other legislation that we needed to pass that I tacked
on the parody bill thereby getting it to pass. Any
of that sheds any light to what it's been like
to try to advocate for these issues.
Yeah. Absolutely, Over the last twenty thirty years, the perception
of autism mental health, it's changed. It still has a
long way to go, though. There's still a certain perception
that people have that is not true. Yet that's what
they think is true. So that's what we're stuck with.
What can we do to change that so that people
still have the opportunity to get help, so they can
get out there, work, have a family, and contribute the
way they initially thought that they could.
I think that we need to organize ourselves politically to
get the policy changes we need. When you think about
the graying of America, you think about Alzheimer's, and frankly,
you think about other communities that suffer from great disabilities.
You think about all of the caregivers, predominantly women, and
how this impacts the whole family. What's missing in all
of those issues is the family and the holistic approach because,
as I said, we look at these diagnoses in a vacuum,
we think about just the medical side. Frankly, parity mental
health parody and the Dediction Equity Act has become a
major tool for the idd community, particularly autism, because families
with children with autism need all the wrap around services,
and those wrap around services are essential in the treatment,
if you will, the delivery of healthcare to that population.
So it's really been a parody that has become a
really great tool for families to get what they need
because the parity law highlights the disparities in access to care,
the disparities in reimbursement by insurance companies. But my point
is that we all share, as I said, this need
for home and community based care, and we as a
country are just going into this new space where we're
sick and tired of the healthcare system as it currently stands,
which is only folkocused on sick care. Right, we have
no appreciation or how we could deliver health to more
Americans at a fraction of the current cost. We are
four times higher than the next industrialized nation in terms
of the cost of health care, and yet our people
are going without health care and it's too financially prohibitive
and it's the leading cause of bankruptcy. So you have
to say to yourself, when an't we going to fix this?
It's currently money that's being eaten up in really end
of the life care, end of illness care, when it
just consumes so many resources, When if we could move
things upstream, we could really mitigate downstream costs. And this
is not just some hope or wish. This has been
demonstrated by science. But our medical system makes profits based
upon quarterly and yearly you know, budgets. In other words,
we we don't have budgets that reflect the return on
investment for a longer period of time, which if we did,
we would pay for things that we don't pay for
today that would have curtively much bigger return on investment.
The bottom line is, we just need to have a
more sophisticated approach. And I think that when I kept
running for office, I would have certain constituencies that would
support me. What they asked for I prioritized because they
were influential in my political career. What I find now
with these issues is we don't have the political power
that we need to get policy makers to pay close
enough attention to what we need as they try to
make sense of all the demands on their time and energy.
And so the end of the day, I really see
this as a political power issue. I think the Kennedy Forum,
which I started on the fiftieth anniversary of President Kennedy
signing the Community Mental Health Act of nineteen sixty three,
I talked all about the community, how we have to
build an agenda around a policy roadmap. But now we
have what we need to know about what works and
what doesn't. Sure, we need to continue to invest in that.
But now it's implementation. Now it's the time of action.
How do we get this turned around so that we
can get the action and the focus on what is needed.
You can't get the action unless the elected officials really
see the power of this advocacy world. Now, I have
to say for autism, they have done a fantastic job
at really bringing political power to bear on behalf of
the autism community. It really is impressive that said, they
have a lot with the mental health community, but even
the autism community doesn't always see that, just like the
mental health community doesn't see how the autism community is
part of our agenda. If you look at the Kennedy
Center at Vanderbilt University in Nashville, they have the center
for research around the comorbidities of anxiety and depression with autism,
and not surprisingly, people with autism feel socially alienated. They
are marginalized, they are bullied, and hence they have a
lot of anxiety. But when you think they must be
taken care of by the IDD system, the IDD system
doesn't think of itself as a mental health system in
addition to an IDD. So you can have group homes,
you can have supports, but those supports do not have
the insight about the mental health needs of people with
intellectual disabilities because they're no different than anyone else. In fact,
my aunt Rosemary, who was born intellectual disability, had also
a psychiatric condition of bipolar which was the reason my
grandparents chosen to give her lobotomy, which of course was
a disaster and which relegated her to really the secrecy
of a condon out in Wisconsin, which was not acknowledged
by my family until President Kennedy, in his second year
in office, said to my aunt Unis that it was
time that the family come out and acknowledge Rosemary's situation. Ironically,
that tragedy in my family sparked a movement because it
was Unice who then took that feeling of being isolated
and marginalized and turned it into something called the Special Olympics,
where sport was the medium by which families and athol
each could feel a part of. And what a miracle
that Special Olympics has been. But the point I'm making
is Rosemary had both an intellectual disability and a psychiatric condition,
and we still, even to this day, only focus on
one or the other. We don't focus about bringing holistic
care to people.
Yes, I one hundred percent agree. We definitely need to
find a unity so that everyone can be helped. Unfortunately,
in our country we live in a society. If it
doesn't affect us, it's not a problem. But then when
it does affect us, it's a huge problem. Congress is
exactly the same way they live their lives, just like
everyone else. How do we get the point across to
them that this is an issue that has to be
addressed so that everyone in our country can live a
fulfilled life.
We have to meet each constituent group on what their
audience is and how our issue will penetrate with that group.
Monolithic message that will work with all groups the same.
I will say that when I was in Congress and
I had gotten a DWI and was in treatment, and
then I came back, I got a lot of my
colleagues who frankly I had never really talked to before,
reach out to me. They had sent me notes, get
well notes, and so forth. When I was in rehab
and I went to their offices, they always just wanted
to meet with just me. And by the time that
whole experience ended, I knew dozens of my colleagues who
themselves were struggling with addiction or depression, anxiety, or who
obviously had family members who struggled. I can guarantee you
none of them knew each other, because no one leads
with this right. Everybody knows if someone struggled and fought
the good fight with cancer. Largely for people in recovery
from like myself. There's a quote anonymity. The anonymous nature
of these illnesses, and that really limits our ability to
connect to others in society and also to build a
political movement. So I am a big believer in the
spiritual nature of anonymity. I think all I say is
I'm a member of a twelve Step recovery group and
I'm a person in long term recovery. I have not,
in that phrase Tony said anything about what twelfth Step
group I meant. And so for those of my friends
and fellow Trudgers who are listening to this, it's possible
to be political and public about our recoveries without violating
the eleventh tradition of our Twelfth Step recovery movement. There's
at least twenty eight million Americans in long term recovery.
No one knows who these people are because they're all
in church basements, and they keep silent about it because
they think that's the way she do. So if you
want to build a political movement, it's pretty hard to
do if people aren't willing to raise their hands. And
I think the shame on intellectual disabilities have been dramatically changed,
and I think really large part to major contributions from
people like my aunt. I don't think people really know
how many other people around them really struggle.
Now, you wrote a book. In that book, didn't you
address some of these issues with the families and how
things could be adapted to help them.
With my book, Profiles and Mental Health Courage, I feature
twelve people and their families. So tony to your point,
the family is left out of this conversation. If we
looked at the one and four, one and three, whatever
the number is that they cooked up in the last
year or two on how many people this affects, you
lose sight of the fact that it's one and one.
Because every single family in America has someone who's been suffered.
It's just impossible not to. We all have brains like
every other organ in the body. It gets sick just
like anything else. It has challenges, and we need to
treat these illnesses as opposed to shame people who are
suffering from them. But in each of these stories I
include the family members because for those of us who
are fortunate to make it out of the depth of despair,
we're the only ones who tell our story. In a sense,
because if it's a story that's murky and not black
and white and not crystal clear, that you've succeeded, you
don't tell your story because you feel that shame. Again.
What we're missing in America is the feeling that they're
not all happy ending stories, but there's some real bright
spots when people are struggling trying to and that has
to be celebrated. In this book. A lot of the
people who I feature, they're still struggling. It's important that
people don't feel alone. The worst thing people can feel
is that there's no one else like them out there,
and then they feel that desperation and hopelessness. And I
want people to know that in the real world, these
issues play themselves out and the criminal justice system, obviously,
in the workplace, in the healthcare system, and most importantly
in the family, which by the way, does not have
the tools to talk about these issues because they're silence. Right.
There's no kind of narratives that help people come to
grips with what it is to live with someone who
are struggling with one of these illnesses. So everybody's affected.
And I think, Tony, the way we've changed the kind
of political dynamic is also to change the cultural dynamics.
So the culture really still judges people, it's just very
dangerous to do that and think that we can get
the kind of attention because we're dismissed and we are devalued,
and that really through the implicit kind of well, you're
not capable. It's like what we do with seniors. They're
in the scrap heap, They're not able to contribute anymore
to society, they're no longer useful. We have then, fortunately,
this still is very persistent feeling, unless you're active in
the workforce, unless you're really productive, that you're somehow not worthy.
One of the things I'm working on now is to
try to get the ecumenical community of the faith community
to weigh in heavy on these issues. My church, the
Catholic Church, has been really missing an action on helping
its community of parishioners. So in my church and where
I live, people know that I'm in recovery.
I'm sure because people know what you're going through, what
you've been through, they probably reach out to you for advice.
I am inundated tony from fellow parishioners who are looking
for help for their loved ones because I'm the only
one they know. I had the good fortune meeting with
the Holy Father a month ago, Cardinal Stuepage from Chicago,
Cardinal Tobin who's here in my state now in New Jersey,
and they were very interested in really ramping up way
Catholic Church supports lay people, which is like non clergy
for people who are not familiar with the Catholic Church.
So we have to empower community members to help each other.
And President Kennedy's the thing I find whenever I've traveled
is that people were so inspired by the very simple
phrase ask not what your country could do for you,
but what you could do for your country. People want
to be of service to others. You go to a
special Olympics event, people are joyful, happy Why because they're
in communion with others. They're celebrated for their humanity, their
common sense of dig the dignity of every human being.
And we're all children of God and we are all
helping each other. There's a feeling of fraternity. And the
happiest I am Tony in any given week is when
I get a phone call to ask someone who asks
me to help a loved one who can get insurance
because I can get help with their insurance companies. Since
that's been my life's work, I know all those folks.
That must give you just a great feeling to have
the ability to help some of these people.
That's when I'm feeling the best about myself because I'm
useful to someone else. And frankly, in recovery, that's the
secret sauce to the psychic change that we have to
have in order to have long term sobriety. We have
to have a conscious contact with a higher power, which
means we cannot be feeling as if we're controlling everything.
We have to be just servants to doing the next
right thing and helping others who are need of struggling,
because that's how we get relief from the burden of
our our own self centered, selfish thinking, which creates torture
internally in terms of our feeling of worrying about we're
going to lose what we have or not get what
we want. And I think we as a country need
to really embrace that. And frankly, it's a very bipartisan
and as I said, spiritual thing. So I'm working with
the Catholic Church to try to do some things, and
we are now finding synagogues and mosques and other faith
leaders who are interested in doing because Frankly, these are ubiquitous.
Every faith tradition is dealing with the ell inches that
families are facing because the church doesn't always know. They're
not in the business of getting someone who's got schizophrenic
or bipolar addiction to treatment. That's not their job, but
they can be there for the families of those folks.
And as a person who grew up in a family
that suffered from alcoholism, there's very little in the way
of alan on. It's just the group twelve step group
for people who have family members who are suffering from
these illnesses, and I figure maybe churches and other places
of worship can do more to help those families going
through this encouraging group conversations within the parish, within others
within the parish who are facing similar things. That's I
think one of the ways we wide in the aperture
of getting support for these clauses is we've got appeal
to the common humanity of every single person, because everybody
wants the current system to change. It's so vital for
all of our self interests.
What about the economics and how it affects people economically.
It's a powerhouse of an issue because if you can
reduce the stress on caregivers. That helps the lawyers who
are seeing people cycle in and out. And now in
the new world that we're in, there's so much talent
and creativity amongst these caregivers who can't contribute that economic
value because they're so burned out and they can't continue
in their jobs because they have no support for their
family members. So the good news of the modern world
is we can measure the seismic impact of our current
failed approach to helping meet the needs of the whole family,
and I think that will be what drives a lot
of people to want to invest in this space because
they'll see the economic returns, and then of course a
lot of other people will see the personal and humanistic returns.
Yeah, that's a great point. If we can just get
that stigma away from it so people can embrace it
and find ways to help. I was speaking with a guy.
He says, if I tell people I'm autistic, they question him.
Yet if he was to tell them that he had cancer,
they would say, oh, that's too bad, how can I help?
So ultimately, we have to get that cohesiveness so everyone
can find it within themselves to reach out to people
whether it's autism, mental health, doesn't matter what it is.
They have to find it within themselves to offer their
hand and help.
That's right, that's right. The beautiful thing is that for
people with these diagnoses that they can help each other.
The relief comes from being in community, because isolation is
what's really impacting the whole public health. People are being
isolated for any number of reasons. I think if we
make the focus isolation, people with disabilities are the most
isolated of the group. But there but for the grace
of God, we do not want to isolate people. It's
our loved ones, it's us, It's the society that suffers
if we do that. We've got a lot of work
to do. But it's a time where people if we again,
we need some sophistication to plan a strategy around changing
people's perceptions. That's what political campaigns at their best are about,
helping to educate and build a coalition around kinds of ideas.
That's what we need. Absolutely.
What is it that you would like to tell the
listeners that you feel is very important for them to
hear concerning all the work that you're trying to do
to help those that need our help.
In shameless self promotions, profiles and mental health courage. I
have in the back of the book as I set
a QR code for our alignment for product. In order
to make a difference, Tony, we need to align the
various pieces of supports that we need. Some of those
pieces are supportive employment. Who when they think about intellectual
disabilities addictions, thinking about employment Employment is key to the
self esteem and sense of purpose for people who are
struggling in recovery, trying to build, stabilding their lives. Housing
Who thinks that housing is what some one who has
a medical need need. Housing's crucial. If you don't have
a stable place, you can't get the most efficacious treatment.
What about these other combinations? And the problem is the
whole government is siloed by budgets. So there's so much
money for housing, so much for labor, so much for
criminal justice, so much for human service and so forth.
And what we fail to do is say how much
of this money in housing is helping leverage the investments
we're making in healthcare or in reducing the criminal justice
spend because we unfortunately have no crisis response. By the way,
for people with intellectual disabilities, who too often get arrested
because of the lack of literacy on the part of
first responders about someone with inelectual disability, someone with mental illness.
And so we need to have a multi pronged systems
based approach. And so that's why I call this the
Alignment for Progress. And I'm working with all the other
advocacy groups because we have to align. We all have
an interest in this. Even though some of us have
an interest in this piece of the continuum and others
have an interest in this piece of continuum. Nothing will
work unless we're all understood that this has got to
be a continuum and it requires all of our efforts,
no matter where we are, to have a wider view
of all the other aspects that need to go into
helping people live their fullest lives.
Yes, that's amazing that you brought up the part about work.
I had Temple Grandin on the podcast. One of the
most important things that she focused on was getting people
back to work. She mentioned creating a pilot's checklist for
them to follow getting them to the workforce where it
would create a win win situation for all.
Yeah, I just might make a shameless plug two for
best Buddies. So I've been on the board of Best
Buddies such just started by my cousin Anthony Shreiver, and
they're really focus is employment, so they do work with
companies that are willing to hire folks. Those folks have
to obviously be mentored, supported and employment they also have.
It's like big brothers, big sisters. So for special Olympians
who when they're not out competing in Special Olympics, need
to be supported in their community. Just a big shameless
plug for Best Buddies.
That's all right, It's about anything that can help. This
has been a great conversation, great information. I really appreciate
you coming on Tony.
Congratulations and all your incredible work and success as a
recording artist and producer. I love music. My mom was
a concert pianist. Obviously, the big tribute to President Kennedy
is the John F. Kennedy Center for Performing Arts, because
that's where we get our spirit, our sense of identity
culture from the arts. And I have to think you
feel so fulfilled having been able to be such a
big part of contributing to our culture as a nation.
Yeah, I really appreciate that. It's been a really great
journey for me working with as many people as I've
worked with. Yeah, I'm very fortunate, indeed.
Yeah, it's great. It's great.
Well again, thanks for coming on. It's been great. Thanks
so much, Tony, it's been my pleasure. Thanks for taking
the time out of your busy schedule to listen to
our show today. We hope that you enjoyed it as
much as we enjoyed bringing it to you. If you
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