We have made some big mental health policy mistakes in my
lifetime. And my son Tim is among the
millions of our sons and daughters who have paid for them.
This is because he happens to be among the 6% of sons and
daughters with serious mental illness.
We fail to see mental
illnesses as often preventable and always treatable diseases. And although half of us will be diagnosed
with one during our lifetime and mental illnesses cost as much to treat as
cancers, we more readily send people with mental illness to jails and prisons
than we do to hospitals and health centers.
Meanwhile, we underfund mental health care, special education, and
social services systems.
I explain what this
has meant for my son in an essay just published by Health Affairs, the nation’s leading health policy journal.
How I Helped
Create a Flawed Mental Health System That’s Failed Millions – And My Son
covers over twenty years of Tim’s life in Connecticut, Texas, and California –
a life now lived mostly in jail, in hospitals, or on the streets. This isn’t because of his mental
illness. It is because of the way we
treat his mental illness.
The article appears in the September 2012 issue of the print
journal, but Health Affairs has also
made it available free of charge online and via podcast. There is a link at the end of this column.
In the essay, you
will see that we former policymakers – along with educators and service
providers – made a lot of mistakes that resulted in the isolation of people like
Tim.
And today’s policymakers aren’t just repeating the mistakes
we made. They are piling new ones on top
of them.
As a Connecticut state legislator in the 1980s, I thought we
had the right idea. Close the archaic
state psychiatric hospitals, and move people with chronic mental illnesses back
to their homes, schools, and communities.
There was a problem.
Closing the institutions was popular, but returning people with mental
illness to communities wasn’t. So we
directed only some of the dollars we saved into services. The rest we used to lower taxes.
We justified this because we made taxpayers happy and because
we believed that whatever happened in the community would be better than the
underfunded services in the institutions.
We were wrong. Sometimes no services are worse.
Today, Americans with serious mental illnesses have life
expectancies that are diminished by as many as 25 years. They die from violence and suicide, and from
ineffectively treated chronic illness.
Those who survive suffer from stigma and neglect. This is because they often act differently
from the rest of us, sometimes because of disease, sometimes because of the
medications they take to manage disease, and sometimes because of the drugs
they use when the medications don’t work.
We are afraid of them.
To make them less frightening, we use the term “behavioral
illnesses” to describe what they have.
But this in turn feeds a fantasy to which unsophisticated people (some
of whom serve as policymakers) cling – that mental illnesses are the same as
bad behaviors, and people with mental illnesses could choose to will away their
diseases if only they’d try. As if
someone with cancer or heart disease could will those away.
They can’t.
I can’t defend what
we did in the 1980s to shackle people with mental illness with neglect. But it seems to me that today’s policymakers
are doing worse.
They can see with
their own eyes the results of neglect – people sleeping in our parks, lying on
our sidewalks, and standing on our street corners begging. So how can they possibly defend the $3.4
billion in cuts they’ve made to state mental health services in the last three
years, or some of the other horrible policy decisions I write about in the
essay?
Maybe they just choose to look the other way.
That’s what most people do who see my son Tim – and all our
sons and daughters who are like him.
And when they do, they miss seeing a gentle soul with an
easy smile, a good heart, and an imperfect history who has accepted humbly the
hand he has been dealt and graciously consented to me writing about it.
But what they miss most isn’t who they choose not to see,
but an essential part of what makes us human – empathy. We were made to do better than this.
To read the full Health Affairs Narrative Matters essay,
click here.
For links to the sources of data cited in this column,
please see the mental health section of my data links
page.
If you have questions about this column or wish to receive an email notifying you when new Our Health Policy Matters columns are published, please email gionfriddopaul@gmail.com.
People look away from my son, Nicholas, too. He is lucky - he receives community mental health services and a housing voucher that, so far, helps him to live independently (for the first time in his 30 years), though in extreme poverty. But the state flat-funded non-profit mental health providers three years running, and last year provided a bare 1% Cost-of-Living increase. The result has been deep cuts in staff, increased caseloads, reduction of services - instead of a psychiatrist available to meet with clients one day a week, it is now a half day. And so on. We start with woefully inadequate funding, and then we reduce that even further, but say that we are "preserving the safety net." 10 years ago, when my son was floridly psychotic and delusional, he could receive in-patient treatment until he was stable enough to hope maintain control of his illness, remaining in the hospital under care and supervision, for 3, 4, even 5 weeks, and, if deemed necessary, transfer to appropriate residential care. Now the average length of stay for in-patient hospitalization for those most psychotic, most at risk, is 3 days - if you're lucky. Our mental health care system isn't broken - it is smashed. And people like Tim, like your son, and my son, and so many of our children and loved ones, are paying the highest price for our abandonment and neglect. They are invisible, because we choose not to see them. They end up in jail, on the streets, or dead. We choose to look away. Shame on us. We are judged by how we treat "the least among us", and so we should be. And Tim, Nick and all the others - they are the very bravest people that I know.
ReplyDeleteI forgot to say thank you - thank you for sharing Tim's story, and your story, and for your compeling article in Health Affairs, which I hope is widely circulated and read.
ReplyDeleteIn a P.S., I should add that anyone who has paid attention, knows that "mental health parity," when it comes to private insurers, is a joke. We passed so-called parity legislation for mental health in CT in 1999. The result was that insurance companies tightened up their criteria for authorizing treatment, and literally made care harder to obtain. If we want true parity, parents should be allowed to continue their adult children with mental illness on their private insurance, and insurance companies should be required to cover comprehensive case management services from community mental health agencies, together with adequate and appropriate in-patient care when clinically indicated.
Nick's symptoms first surfaced when he was 15 - early onset (through bipolar disorder to schizoaffective to schizophrenia), but not nearly as early as Tim's. What do I wish? I wish that we had moved to Canada. But we didn't, and now Nick, and his brother and sister, pay the price, grieving for the brother they should have had, loving the brother that they do have, and knowing that, as a state, as a country, as a society, we are letting all of the Tim's and Nick's down. We broke our promise, because we had no idea what we were doing, and we never meant to keep the promise anyway.
As for Nick, at least we know where he is, and, for the moment, he is safe. But he is actively delusional, and hanging by a thread. My thoughts will be with Tim, and with your family. Please keep being the advocate that you are - we need so many like you, to tell their stories, to work for change. Again, thank you.
I am the child of a mentally ill deceased father. When he could not control me, he beat me. As I was growing up, I hid this the best I could from everyone - my teachers, other relatives, my friends. When my father tried to commit suicide with my terminally ill mother's pain pills, it fell to me to manage his life amidst the maze of inpatient and outpatient settings. He lived his last days here in Florida in a nursing home where he thought that he worked for President Kennedy and that "they" were trying to assassinate him. It was not until he tried to commit suicide for the second time did I learn that he was involuntarily committed for a year at age 19 and that he had received "permission" from his doctor to marry and have children. I now understand that my mom, grandparents and others tried to create a reality that he was able to live in. Before my mom died, she told me that she thought that loving someone meant protecting them and that is what she did for my dad. There is no point beating ourselves up for what happened in the past...we must learn from it and move forward. Thank you Paul for your article and your insight.
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