Losing Tim

Losing Tim: How Our Health and Education Systems Failed My Son with Schizophrenia is now in the Columbia University Press catalog.

Cover Photo Credit: Hartford Courant, Shana Sureck

You can find it using this link: http://cup.columbia.edu/book/978-0-231-16828-1/losing-tim

It will be available in the Fall of 2014.  It is a story of how the mental health policies of the last generation of policymakers (of which I was a member) failed my son, and how the policies of this generation of policymakers continue to fail him, and so many like him.

I can't say that I hope you will enjoy it, but I do hope you will find it moving.
 
And that it will help move us all - including the next generation of policymakers - to action.  It is long past the time we could pretend that neglect is a synonym for common sense and compassion.

For Better Health, Why We Need Integration of Care

I was asked recently why I didn’t actively seek out a specialized school setting many years ago in which to educate my son.

My son has a serious mental illness, one which first manifested when he was a child.  I’ve written about this before in Health Affairsand will write about it again in a book scheduled for publication later this year.

The argument is this.  If you put children with a special condition – such as serious mental illness – into a classroom with other children with the same condition, then you can adjust your educational services to meet the needs of those children all at the same time – and you will get better outcomes.

That’s essentially how our health care delivery system has often been built, too.  Through most of the twentieth century, people with mental illnesses were treated in one set of hospitals (usually state hospitals). And people with most physical conditions were treated in a different set of hospitals.

I wrote “most” above because we even segregated regular health care sometimes.  For example, we had specialized TB hospitals through most of the twentieth century, remnants of which still existed in some places as we turned the page to this century.

But segregating services like this did not lead to better outcomes. 

The best data to support this conclusion come from a study of life expectancy of people who were in state psychiatric hospitals in several different states.  The study found that, on average, the life expectancy of people in those hospitals was reduced by up to twenty-five years or more.

To get a sense of how significant this is, consider this.  It is greater than the overall life expectancy reduction attributable to cancer.

The problem with segregating health care services was this.  When you segregate treatment, you often forget about the rest of the person.  The people with mental illness who died young were not usually dying because of their mental illness, they were dying because they had other medical problems that were undertreated, too.

This is the argument against segregating educational services, too.

When we did move my son into a private school for children with emotional disturbances, it focused almost entirely on managing his emotional disturbance, and he received few, if any, educational services.  He arguably didn’t get a better health outcome, nor did he get a better educational outcome.

This is not to say that we should educate or treat everyone “in the mainstream.”  That’s too simplistic, because it too often implies that a “one size fits all” standard should be the norm, when that is not what children (or adults) with serious chronic conditions, like mental illness, need. 

What people need are services tailored to their own needs that take their “whole person” into account.

There is really only one way to do this – by integrating care and services. 

For everyone, this means that the right thing to do is to integrate general health treatment and services with behavioral health treatment and services. 

It means screening for behavioral health in the annual check-up, just as we screen for weight, vision, hearing, blood pressure, heart, and lung function.  It also means connecting the work of behavioral health specialists to primary care providers in the same way that we want obesity care, cancer care, diabetes care, treatment for hypertension, and pain management connected to primary care.  We want good communication, and each treatment strategy considered in the context of all the others.

This gets meaningful results, as reflected in the chart that accompanies this column.

But it also means making the changes necessary to integrate health and behavioral health services with non-health services.

In the case of children, this means integrating them with educational services, and actually making community-based care a part of the overall instructional plan.  The million dollar question (literally) is “who should pay for this – the educational or the health care system?”

In the case of adults, this means integrating health and behavioral healthcare services with housing, employment, and social and peer support services, and recognizing that recovery is only possible through integration, and only meaningful if it can be measured by an increase in life expectancy.

Otherwise we’re just spinning our wheels and repeating our past mistakes.  

Paul Gionfriddo via email: gionfriddopaul@gmail.com.  Twitter: @pgionfriddo.  Facebook: www.facebook.com/paul.gionfriddo.  LinkedIn:  www.linkedin.com/in/paulgionfriddo/

Why Are We Afraid of Mental Health Screening?

Should all school children be screened for mental health?

The evidence suggests that if we do not screen them, then we will be continuing a persistent and historical pattern of neglecting the mental health needs of our children.  But why let evidence get in the way of fear?

Over the past several months, legislators in a number of states have considering mandating – or at least offering – mental health screening for all children, either in the schools or in pediatricians’ offices. 

But when the Connecticut Legislature had a public hearing on a mental health screening bill recently, opponents came out in force. 

One parent called mandatory screening an “unnecessary invasion.”  The Connecticut Civil Liberties Union argued that mental health screenings should be optional.  A treatment provider asserted that the problem wasn’t with a lack of assessment, but the lack of treatment options.

And in recent days, a Palm Beach Post writer in Florida joined the chorus when he claimed that mental health screening is less “straightforward” than vision and hearing screening in an editorial entitled “Florida Should Not Require Mental Health Screenings in Schools.”

The truth is that if we don’t at least screen, then we don’t know what it is we’re supposed to treat.  And this “head in the sand” approach is what has gotten us into trouble in the first place.

The extent of our neglect of our children’s mental health needs is staggering.  

In 1999, the U.S. Surgeon General estimated that 10 percent of children had mental illnesses serious enough to disrupt their home life or schooling.  That percentage is still cited today, but we have more recent data, too.

For example, the Substance Abuse and Mental Health Services Administration noted that in 2009 two million children between the ages of 12 and 17, or 8.1 percent of the population, had a major depressive episode.

In the same report, SAMHSA also disclosed that 2.9 million children that year, or 12.1 percent of the population, received at least some mental health services in a school setting.

But here’s where the neglect comes in.  Only 407,000 children in 2009 received special education services because of their mental illness – just a fraction of those who needed them.

And this neglect is getting worse.  According to the most recent data from the U.S. Department of Education, only 389,000 children were offered special education services in 2011 as a result of their mental illness.  To put this number in context, this was:

• The smallest number in 20 years;
• A drop of over 20 percent in just six years; and
• Only 8 tenths of one percent of the entire school-age population.

In other words, less than one in every ten children with a serious mental illness is even identified as emotionally disturbed by our special education system.

As for the other nine in ten, their time bombs just tick silently.

Perhaps this could be justified if the stakes were low.  But they are not.  We all know the results of neglect.  We see them every day in our homes and neighborhoods, and, most tragically, on the news.

And what is most frustrating is that the “controversial” screening that could save lives is both simple and non-invasive – and straightforward. 

More often than not, mental health screening consists of a few questions that can be answered and scored in minutes. 

Here is a link to a commonly-used tool, called the PHQ-9.

It asks nine questions about how a person has felt in the last two weeks, with one follow-up question at the end.  Has the person been having trouble falling asleep or staying asleep, or sleeping too much? Been feeling tired? Experienced a poor appetite or overeating? Had trouble concentrating?

These are hardly the kinds of questions that probe so deeply into the psyche of the individual as to scar or stigmatize them for life. 

But, ironically, when we refuse to ask these questions we do end up stigmatizing people for life – if not costing them their lives.

It may seem hard to believe that there could be any fuss about using such screening tools universally when you consider the alternative.  Or that the tools can reasonably accurately identify an emerging mental illness.  But they can, and do.  And the more we use them, the better off we will be.

So what are our schools afraid of?  And, more importantly, what are we all afraid of? 

To reach Paul Gionfriddo via email: gionfriddopaul@gmail.com.  Twitter: @pgionfriddo.  Facebook: www.facebook.com/paul.gionfriddo.  LinkedIn:  www.linkedin.com/in/paulgionfriddo/