Independence Center – St. Louis, MO

Donna Obermeyer writes:

I didn’t know where to put this comment, but a visit yesterday to the 2nd oldest and 2nd largest clubhouse in the nation was an inspirational experience. A reminder that it is good to have big dreams and that they can come true. I’m fortunate because this resource is in my home state and because of that, one of my family members has easy access to it. The website does not replace an in-person visit, but here it is www.independencecenter.org
I was able to get an annual report for 2008 and a newsletter, in addition to a grant writer’s offer to pick her brain.
They also have colleague training so that if you want to work on something like this, you will not have to (completely) reinvent the wheel. 

I remain…
Inspired in St. Louis

Youth Mental Health Care: Timely Topics for Reform

A Child and Adolescent Psychiatrist’s Perspective on Youth Mental Health Care—Some Timely Topics for Reform

by Terry Lee, M.D.

With 16% of the United States GDP going towards health care, health care reform is one of the top domestic priorities of the Obama administration and Congress.  In its recent health care and the federal budget report, the Congressional Budget Office (CBO) estimated that health care overhaul, including universal coverage, will cost approximately $1 trillion over the next 10 years.  The report goes on to discuss potential savings that may help pay for increased coverage, noting: “Significant savings seem possible because the available evidence implies that a substantial share of spending on health care contributes little if anything to the overall health of the nation.  Therefore, experts generally agree that changes in government policy have the potential to produce substantial savings in both national and federal spending on health care without harming health.”

What will reform in the youth mental health care system look like?  The National Research Council and Institute of Medicine recently estimated that the total economic cost of mental, emotional and behavioral disorders of Americans under the age of 25 was $247 billion in 2007.  How can the youth mental health system be more effective and efficient?

Increasing coverage for child psychiatric services will not immediately remedy access problems. There is a national shortage of child and adolescent psychiatrists.  It was previously estimated that the United States would need more than 30,000 child and adolescent psychiatrists by the year 2000.¹  However, there were approximately 6300 child psychiatrists in the United States in 2000.²  The severe national shortage of child psychiatrists is further heightened in Washington State. Using 2001 data, the Washington State rate of child psychiatrists per 100,000 youth was calculated to be 6.6, which was below the national rate of 8.67.³  Other psychiatric prescribers, such as nurse practitioners, physician assistants and primary care providers, are already important members of the youth mental health system, and are critical for increasing treatment capacity.

With increased access, treatments will need to be effective.  Why increase access just to waste resources on treatments that don’t work?  For instance, in a 1999 randomized-controlled study of traditional child psychotherapy, youth in the treatment group were prescribed psychotherapy by  practicing therapists, while the control group received academic tutoring.⁴  The treatment group received an average of 60 individual sessions, 4 group therapy sessions, 18 parent sessions, 13 school personnel consultations and 1 session of psychiatry consultation.  In spite of this large and costly dose of psychotherapeutic intervention, outcomes for the treatment group were no better than the control group.  The entire system should not be impugned based on a single study from 1999, but in child mental health and medicine in general, doing something is not always better than doing nothing.  There is plenty of room for the development of effective and accessible treatments.  Fortunately, there have been some favorable advances in the development and dissemination of effective treatments for youth and families in real world settings over the last 10 years.

One exciting area of progress are meta-analyses and longer-term studies examining psychosocial interventions, psychotropic medications, and their relative and combined effects for problems such as attention-deficit/hyperactivity disorder^5,6 depression^7,8 and anxiety.⁹  So for a given problem, youth and families are better informed of the relative pros and cons of combined psycho- and pharmacotherapy, compared to the individual components alone.  Considerations such the availability of empirically-based psychotherapies and personal preferences about medication will also affect choice, but youth and families have a much better idea of the likeliest outcomes of the various treatment options.

Appropriate use of psychiatric medications will also improve efficiencies in the child health care system.  Used properly for the problems they have been demonstrated to help with, psychiatric medications are valuable tools in the youth mental health system.  Stimulant medications for the treatment of ADHD are relatively well-supported in the literature.  More recently, there has been an explosion in the use of second-generation antipsychotic medications in youth for all sorts of problems unrelated to psychosis.  Antipsychotic medications are now being prescribed for disruptive behavior and mood regulation problems, even though there is no proven long-term effectiveness or safety for youth with these problems.

The diagnosis of bipolar disorder remains a controversial area in child psychiatry.  Between 1994-5 and 2002-3, there was a forty-fold increase in the diagnosis of bipolar disorder in patients under the age of 20 in the United States.¹⁰  The same study found an almost doubling of the rate of diagnosis of bipolar disorder in adults aged 20 and older.  Is the incidence of bipolar disorder in youth going up?  Not so clearly outside of the United States. European countries have not reported anywhere near the incidence nor increase of diagnosis of pediatric bipolar disorder as the United States.¹¹  For instance, a large epidemiological study in the United Kingdom found 0 cases of pre-adolescent mania and 0 cases of bipolar disorder among 2500 youth less than 10-years-old over a ten year time period.¹²  Time, and further research, will tell whether there is a true increase in the incidence of youth bipolar disorder; but currently, the evidence is lacking.

There is no doubt that the youth in this country diagnosed with bipolar disorder have very serious behavioral and mental health challenges.  It’s just not clear at this time how a diagnosis of bipolar disorder helps these youth and families.  To get a flavor of the pediatric bipolar controversy, see the compelling January 2008 Frontline episode at http://www.pbs.org/wgbh/pages/frontline/shows/medicating/

Recently, there’s been some convergence in the thinking around pediatric bipolar disorder and the use of medications.  At the recent FDA Psychopharmacologic Drugs Advisory Committee review of requests for approval of three second-generation antipsychotics for the treatment of schizophrenia and/or bipolar disorder in pediatric populations, American Academy of Child and Adolescent Psychiatry (AACAP) President-Elect Laurence Greenhill, urged caution and suggested and further long-term studies to evaluate long-term safety and efficacy, including require a central national registry.  The committee was very concerned about the incidence and seriousness of side effects associated with the medications.  In the end, the committee recommended approval for use in pediatric populations; and additionally recommended labels clarifying use of these medications for narrowly-defined bipolar disorder and schizophrenia, and not for use in severe mood regulation, chronic irritability, oppositional behavior or hyperactivity.

These are just some topics that come to mind when I think of youth mental health care reform.  What do you think?

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1 Council on Graduate Medical Education. Re-examination of the Academy of Physician Supply made in 1980 by the Graduate Medical Education National Advisory Committee for selected specialties, Bureau of Health Professions in support of activities of the Council on Graduate Medical Education. 1990. Cambridge, ABT Associates.

2 Kim WJ, American Academy of Child and Adolescent Psychiatry Task Force on Workforce Needs. (2003). Child and adolescent psychiatry workforce: a critical shortage and national challenge. Academic Psychiatry, 27, 277-82.

3 Thomas CR, Holzer CE. The continuing shortage of child and adolescent psychiatrists. Journal of the American Academy of Child and Adolescent Psychiatry, 2006; 45, 1023-1031.

4 Weiss B, Catron T, Harris V, Phung TM. The effectiveness of traditional child psychotherapy. Journal of Consulting and Clinical Psychology, 1999; 67: 82-94.

5 The MTA Cooperative Group. A 14-month randomized clinical trial of treatment strategies for attention-deficit/hyperactivity disorder. Arch Gen Psychiatry, 1999; 56:1073-1086.

 6 Van der Oord S, Prins PJM, Oosterlaan J, Emmelkamp PMG. Efficacy of methylphenidate, psychosocial treatments and their combination in school-aged children with ADHD: a meta-analysis. Clin Psychol Rev. 2008; 28: 783-800.

7 March JS, Silva S, Petrycki S, Curry J, Wells K, Fairbank J, Burns B, Domino M, McNulty, S Vitiello B, Severe J. The treatment for adolescents with depression study (TADS): long-term effectiveness and safety outcomes. Arch Gen Psychiatry. 2007; 64: 1132-43.

8 Goodyer IM, Dubicka B, Wilkinson P, Kelvin R, Roberts C, Byford S, Breen S, Ford C, Barrett B, Leech A, Rothwell J, While L, Harrington R. A randomized controlled trial of cognitive behavior therapy in adolescents with major depression treated by selective serotonin reuptake inhibitors. The ADAPT trial. Health Technol Assess. 2008; 12: iii-iv, ix-60.

9 Walkup JT, Albano AM, Piacentini J, Birmaher B, Compton SN, Sherill JT, Ginsburg GS, Rynn MA, McCracken J, Waslick B, Iyengar S, March JS, Kendall PC. Cognitive behavioral therapy, sertraline, or a combination in childhood anxiety. N Engl J Med. 2008; 359: 2753-66.

10 Moreno C, Laje G, Blanco C, Jiang H, Schmidt AB, Olson M. National trends in the outpatient diagnosis and treatment of bipolar disorder in youth. Arch Gen Psychiatry. 2007; 64:1032-9.

11 Soutullo CA, Chang KD, Diez-Suarez A, Figueroa-Quintana A, Escamilla-Canales I, Rapado-Castro M, Ortuno F. Bipolar disorder in children and adolescents: international perspective on epidemiology and phenomenology. Bipolar Disord. 2005; 7: 497-506.

12 Meltzer H, Gatward R, Goodman R, Ford T. Mental heal of children and adolescents in Great Britain. London, UK: Stationery Office, 2000.

Tamara Johnson Makes No Excuses

August is here and its time for a new blog topic.  This month we (Slavica Blagojevic – SB and Andrew Rivers – AR) interviewed with Tamara Johnson (TJ), co-director of Youth’N Action and leader of the Western Washington Branch.

Youth’N Action is an organization which seeks to empower youth and promote youth voice in mental health policy and practice.  Tamara is heavily involved in the youth movement at the national level and frequently attends conferences and gives presentations about youth issues.  She was also recently interviewed for the Seattle Times in an article which looked at her life story and what Youth’N Action is all about.

To link to the Seattle Times article, go to: http://seattletimes.nwsource.com/html/jerrylarge/2009244616_jdl21.html  

 AR/SB: What was it like to attend your first Youth’N Action (YNA) meeting?  Did you immediately know that you wanted to be involved with the group or was there initial resistance?

TJ: The article mentions that my boyfriend, Curtis Dickerson, was involved in Youth’N Action for at least five years before me.  He also grew up in a really bad project in Seattle and was involved in gangs, but Stephanie Lane, the founder of YNA, engaged him and gave him different opportunities such as traveling to speak at a national conference in Oklahoma.  In general, she was just there for people.

Meanwhile, I was still out in the streets doing my thing but I just needed a break.  He said that there was an upcoming retreat in Leavenworth and that YNA would provide for transportation out there, a place to sleep, and meals just for giving our youth voice.  So I went just to give it a try.  We did a small group activity and I found that I just had a lot to say because I could relate to a lot of what they were talking about.  They were understanding youth and their needs instead of just looking at their bad behaviors.  I gave my opinion and found that everyone respected it.  To have my voice valued and respected felt better than being in the streets so I decided to come back and that is what kept me involved in it.

AR/SB: You spoke a bit about some things that helped you feel connected to the group, what techniques do you see as effective in engaging and encouraging youth who are experiencing challenges like yours?

TJ: Initially, just meeting our up front needs is important.  The fact that they provide stipends for our work, because it is work to give your voice and experience.  Free food is always a winner too (laughs).  This stuff is a great start but it still isn’t enough to hook you to take 8 hours a day out of your life just to get a small stipend.  What I found most encouraging was that I could really help people and that because of this; someone might not have to go through what I went through. 

The adults involved were youth friendly and it wasn’t like you couldn’t be yourself.  When I went to private school, they had a youth group that was connected with a church.  Some of the things they did seemed just crazy to me.  They would tell you how to live your life and would persecute people when they made mistakes or didn’t go along with it.  Youth’N Action on the other hand is an open environment and has other people who have been through what you’ve been through.  They are always there to give you advice but they are not going to tell you how to live your life or that the things you have done are unacceptable.

AR/SB:  It seems like a group would have to be at least a little bit structured for people to respect it.  How did Youth’N Action accomplish this – did they have any certain rules that had to be followed?

TJ: Yes, there was definitely a structure.  Some obvious things like no drugs or alcohol but the real thing is that the structure itself is youth-guided.  The concept is that if you make the rules, how can you break them?  When the youth made the rules, they didn’t break them.

The biggest rule we have and that we always have is simply respect.  Respect the group, respect your peers and you won’t have any issues.  We are accountable to each other.  It doesn’t work when someone above is just dropping down rules, that type of authority is not supportive.

AR/SB: Are there any strategies you’ve seen that just plain don’t work for youth in terms of engaging them?

TJ: Yes, but there are differences.  There are some groups which provide a structure for the youth similar to what they would receive at home.  These groups try to keep kids busy.  This works, but only for youth with parents who are very disciplined with them, those that manage their kids day down to when they wake up and go to bed.  Youth’N Action is a structure that works for youth who are more independent.  It also works for those that may be more disadvantaged in their life; not necessarily financially but could also be in terms of emotional issues.  Dealing with real things like emotional issues and things that have happened in their past is good for these youth.  YNA is good for youth who want to develop leadership and feel empowered. 

Groups don’t work when there are too many limitations and when the focus is placed on the program instead of the youth.  YNA is focused on the youth; they make the program what it is.  Over time, the focus of YNA changes because the youth who are involved change and their needs are different. 

A lot of programs have a cutoff; as youth get older they don’t want to go there any more.  For example, my brother was in Boys and Girls Club since he was 5 years old.  Even when he was a preteen, he was there everyday but now he is 15 and finds that the kids there just annoy him.  Because of the situation he was growing up in, he needs to be involved in something outside of the home.  Now that he is 15, where is he going to go?  He’s not done drugs or any of those risky things but when he lost Boys and Girls Club, he didn’t have a positive place to hang out with peers.  YNA made a goal to support youth who are in transition so we don’t work with little kids or provide babysitting.  That is what makes us different and I think that is what we need more of.  Even beyond Youth’N Action, we need more programs to support transition-age youth because when youth reach this grey-area, they get into drugs and violence if there is nothing positive for them to do.

AR/SB: If there was one additional point or correction you would have liked to make to the article published about you, what would that correction or addition be?

TJ: I think we both had different things that we wanted to portray.  He asked me at the end of the interview “What would I tell someone who was in my situation?”  I said that my past doesn’t excuse what I’ve done and I was very glad that he put this in there.  I told him a lot about my childhood and how I used trauma that I experienced as leverage, my father who wasn’t in the picture as leverage, to do things that I shouldn’t be doing.  In every person’s life, there comes a time when, no matter what has happened to you, you have to chose the direction of your life. 

Do you want it to be positive or not?

Do you want to continue the cycle? or,

Do you want to become the person you needed when you were growing up?

 You have to take responsibility for your actions.  That is where it starts.  It doesn’t start with something lucky happening, you have to make the choice. 

I went to that Youth’N Action meeting in Leavenworth when I could have been making money.  But just going to the retreat wasn’t the answer.  I made the choice for my life and that is all it took to change it.

One other thing that he said in the article was that I was a binge drinker and all I said was that I was partying with these people.  I did drink sometimes but it was very different from the way I think of people who ‘binge’.

AR/SB: Is there anything on the horizon for the youth movement or Youth’N Action that you are particularly excited about?

TJ: What is exciting for me is that the youth movement was just a concept but now it is, well I don’t have a good word for it, but it is real.  Now, youth voice is necessary.

Our state is great with youth involvement.  Youth’N Action started as Health in Action under a Systems of Care grant and at that time, we were the first group to involve youth voice in public policy.  All these other programs in the country look to us and model their groups after us. 

Our youth are getting stronger and our systems are more and more supportive.  I see the next steps as really getting into communities so that youth always have support available and not just whenever we happen to be in the area on a particular day.  We’re starting a grassroots group in Thurston/Mason but right now we can’t pay them or give them free food like we got; but the youth are still showing up.  We appreciate the groups that are helping us like Family Alliance for Mental Health who is giving us space and equipment for our activities.  It has been a long time in coming and we are still in the development stage, but it is great to see that there are youth all over the state who are ready to make things happen.

AR/SB: Is there anything else you’d like to add that we haven’t discussed yet?

TJ: One thing that I hope you can include is how important the work that our partners do is to us.  Community partnerships are so important and making connections which can cross the silos.  The work that you all do (speaking about a team of advisors convened to represent youth and family perspectives on mental health issues) brings light to my work and I hope that I bring light to your work as well.