Daniel is 13 years old and his mom brought him to see me because she is concerned that he has a 'sensory processing disorder.' The referral from his physician indicated that his diagnosis was bipolar disorder, r/o paranoid schizophrenia, oppositional defiant disorder, and ADHD. Of course the schizophrenia concerns are very preliminary but Daniel has reported seeing black caped shadowy figures scratching at doors and windows ever since he was old enough to talk. He states that the combination of Lithium and Seroquel mostly keeps things in check. His mom isn't so sure, because the family is walking around on eggshells for fear of contributing to his spiral into an emotional pit of anger and depression. Anything can set him off: the television might be too loud, his brother might walk too close to his personal space, the batteries on the Nintendo DS might run out. Anything can trigger "The Rage," which is what his mom called it several times.
Mental illness is so difficult for families to deal with, and it is usually difficult to express with words how much emotional pain people are in. Although I don't hold to the notion that Daniel's problems have anything to do with a 'sensory processing disorder' there is no question that he has atypical sensory processing. Parents in acute stress are not prepared to hear a clinically nuanced debate about primary and secondary diagnostic problems, and since my objective is to try to help and not to have a debate about 'sensory processing disorders,' I used the Adolescent Sensory Profile to gather some qualitative data on Daniel's perceptions. The mom was working with Daniel to get him to answer the questions and before she handed it back to me she looked at the front of the booklet where it asks "Are there aspects of daily life that are not satisfying to you? If yes, please explain." She wrote,
"Daniel. Shards. White shards. Red shards. Crystal shards. Daniel. Grey shards. Blue shards. Daniel. Shards. More shards."
I told her that I wasn't sure what she meant by this, and she started crying, "When Daniel gets mad, he breaks things. Everything in my house is broken."
Daniel got up from under the table and sat next to his mother. I asked him, non-judgmentally, "Is that true Daniel? If you get really mad, do you sometimes break things in the house?"
Daniel mostly stared forward in stony silence, occasionally visually orienting to the window.
After a while he opened up a little and we were talking about friendships in school. "The kids said I am fat, so I punched one of them, and I got suspended." Daniel has gynecomastia. Kids that age can be merciless. I noticed that he was only talking about a single incident, so I asked him "How often do you get bullied?" His answer was interesting, "I never said I get bullied; I said that the kids said I was fat." Apparently, bullying in his mind had something to do with having someone stealing lunch money or someone hitting him. It didn't occur to him that verbal abuse was bullying, perhaps because it was just the norm.
Daniel has a 504 plan in school. His grades are good and behavioral difficulties in school are rare. His attendance is poor, because on days that he has difficulties he simply won't get out of bed. He has access to the school counselor but Daniel believes that this is "worthless." He has a counselor that he sees privately, and he sees a psychiatrist once monthly for medication management. He had an OT evaluation in school which indicated that he had no need for school based services. Granted, he had some sensory processing differences and once a month he flips a desk over, but the only suggestions offered were 'sensory breaks' to get up and walk around.
I am not certain that putting on the 504 an accommodation of getting up and walking will do anything about the shadowy caped figures scratching at the window, or the associated inability to test ego boundaries and find a way to cope. Still, that is the school based paradigm.
By my assessment Daniel has severe anxiety and difficulty with situational coping. He has poor social skills, poor impulse control, and a very constricted activity configuration. He also has some illogical and confused thinking around social situations. Functionally, he is breaking everything in the house and confining himself to his room. It also happens in school, but only sometimes.
The mental health system in my state is rather expansive and New York is second in the US for per capita spending for mental health services (NRI, Inc., 2012). Spending has trended upwards every year (NRI, Inc., 2010). The same can not be said for many states, but the point is that funding has increased over time in NY. According to a SAMHSA report, despite increasing amounts of money being spent, many people still do not receive treatment (Levit, et al., 2008). This report also states that mental health expenditures may not be keeping pace with the growth of health care spending in general, and that proportionally there has been a shift over time where more money is being spent on pharmaceuticals and less is being spent on inpatient care. As a final point,
"Three out of every ten dollars spent on MH treatment are expected to go for retail purchases of prescription drugs in 2014, up from 23 percent in 2003. Specialty and general hospitals are forecasted to account for 22 percent of total MH expenditures (down from 28 percent in 2003), physicians and other professionals for 16 percent (up from 14 percent in 2003), and MSMHOs for 10 percent (down from 13 percent in 2003)."
I try to understand this in terms of Daniel, because statistics are kind of meaningless when they are out of context of what they are supposed to represent. By my understanding, there is plenty of money for mental health services in some places, and a lot of it is going toward medications. Daniel has gynecomastia, probably from his meds, but the service providers in his school don't think that he has any needs for services. He is destroying everything in the house, but there are no real services for the family to access except for 911. The parents are grasping at straws, and that is why they show up in my office praying for a sensory processing disorder miracle cure.
That is about as blunt as I can put it. I hope people reading see the problem.
OK so what are we supposed to do about this problem? I noticed a blog post from Heather Parsons, the AOTA Director of Legislative Advocacy. She states, "While almost everyone I talk to in Congress feels there is a need to do something, that our current services are not meeting the needs of people with serious mental illness, there may not be enough agreement on how to meets those needs, and how to fix our system, for a mental health bill to pass this Congress."
Evidence indicates that in those places where we have a lot of money to spend that the services are still terrible. I am not convinced that legislative advocacy can provide a solution to this problem. It is a tree, and I think we can bark up it, but I don't know that this is what will help Daniel most.
What would happen if we looked into the mirror instead of hoping a politician can solve this problem? Politicians are busy trying to sneak in gun legislation with mental health bills, and that will keep those bills stalled indefinitely. Pharmaceutical lobbies have also had obvious success in getting legislation crafted that funnels reimbursements for meds. There are different ways we can address this problem.
According to the NBCOT Practice Analysis (2012) for both OTRs and COTAs, only 2-3% of all practitioners surveyed report working in mental or behavioral health settings. These statistics are consistent with an AOTA Workforce Study completed in 2006. Despite the low numbers of practitioners working in exclusive mental health settings, the NBCOT Practice Analyses indicate that large percentages of practitioners report seeing patients who have mental health concerns (e.g. anxiety, mood disorders, etc.).
This matches Daniel's problem precisely. He ENCOUNTERED occupational therapy in school, even though that is not a 'mental or behavioral health setting.' The problem is not that he didn't have access to an OT. The problem is that the OT couldn't be bothered with Daniel's problems.
Why didn't the OT think that Daniel needed related services? There was a perspective that his problems were not impacting his educational performance. This is a paradigm problem. It is a problem of limited thinking. It is a problem of preference for seeing really cute 6 year olds who have difficulty with handwriting, and doing everything possible to avoid seeing the not as cute 14 year olds who are overturning desks when the edges of reality start to get a little blurred.
Perhaps a better tree to bark up is how we are training our own workforce. I find this quote from a SAMHSA-commisioned report (Annapolis..., 2007) fascinating
Another group that has voiced strong concerns comprises managers within organizations that employ the workforce. Their constant lament is that recent graduates of professional training programs are unprepared for the realities of practice in real-world settings, or worse, have to unlearn an array of attitudes, assumptions, and practices developed during graduate training that hinder their ability to function. University-based training programs and professional schools, despite their academic base, are largely viewed as out of touch with the realities of contemporary practice and as failing to provide substantive training in evidence-based practices. These concerns exist regardless of the professional discipline. It is simply difficult to overstate the level of concern among workforce employers about the current relevance of professional education in the behavioral health disciplines.
I suggest that we spend more time and resources on looking in the mirror and improving our own training programs. There is no evidence that when money is available that it is doing anything to improve the quality of mental health care. There is ample evidence that although occupational therapists encounter people who have mental health problems regularly, that they don't have the knowledge, interest, or skills to intervene.
Annapolis Coalition on the Behavioral Health Workforce (2007). An Action Plan for Behavioral Health Workforce Development: A Framework for Discussion. Downloaded from http://www.samhsa.gov/workforce/annapolis/workforceactionplan.pdf
AOTA (n.d.) Workforce Trends in OT. Downloaded from http://www.aota.org/-/media/Corporate/Files/EducationCareers/StuRecruit/Working/Workforce%20Trends%20in%20OT.pdf
Levit, K.R., et al (2008). Projections of National Expenditures for Mental Health Services and Substance Abuse Treatment, 2004–2014. SAMHSA Publication No. SMA 08-4326. Rockville, MD: Substance Abuse and Mental Health Services Administration.
National Association of State Mental Health Program Directors Research Institute (NRI, Inc.). (2012, September). FY 2010 State Mental Health Revenues and Expenditures. Downloaded from http://www.nri-inc.org/reports_pubs/2012/RESummary2010.pdf
National Association of State Mental Health Program Directors Research Institute (NRI, Inc.). (2010). State Mental Health Agency Profiles Systems and Revenues Expenditures Study. Downloaded from http://www.nri-inc.org/projects/Profiles/Prior_RE.cfm
National Board for Certification in Occupational Therapy (2012). 2012 Practice Analysis of the Occupational Therapist Registered. Downloaded from http://www.nbcot.org/ot-educators/group-tests-practice-orders/exam-blueprints
National Board for Certification in Occupational Therapy (2012). 2012 Practice Analysis of the Certified Occupational Therapy Assistant . Downloaded from http://www.nbcot.org/ot-educators/group-tests-practice-orders/exam-blueprints
Parsons, H. (2014). Can Congress Pass Comprehensive Mental Health Legislation. Downloaded from http://otconnections.aota.org/aota_blogs/b/aota_federal_policy/archive/2014/04/23/can-congress-pass-comprehensive-mental-health-legislation.aspx