Tag Archives: health

Child psychiatrists or unicorns, which one is harder to find?

March 6th, 2016

Unicorn Pooh, Flickr, CCWhen the local mental health clinic abruptly closed last September, Cheryl knew she would have a tough time finding a new psychiatrist to treat her son.  Her 15 year old son is complicated, to start with.  He has several diagnoses, has uncommon reactions to medications and has had frequent ups and downs.  Shortly after she began searching, Cheryl realized the truth:  child psychiatrists with openings are nearly impossible to find.

The clinic closed with no warning and Cheryl didn’t have time to get a referral, make a plan or even grab her son’s records.  She scrambled just to stay afloat. She called every clinic and practice that her insurance covered.  Then she called the ones it didn’t cover.  She googled, she pored over lists and once, upon finding a number for the old psychiatrist, called it only to find it was the doctor’s home number.  That didn’t work either.  The old psychiatrist didn’t have a private practice and couldn’t prescribe through the now-closed clinic’s system any more.

It’s more than 6 months later and Cheryl is still looking for a psychiatrist.  Her son’s pediatrician has been reluctantly prescribing the same medications he was on last September when the clinic closed.  If anything changes – a new reaction, a new crisis – the pediatrician doesn’t think he has the expertise that Cheryl’s son needs.

For Cheryl and many other parents, child psychiatrists are scarcer than unicorns.  In popular culture unicorns are making a small comeback, appearing on t-shirts, in movies and songs.  In the real world they remain a myth.  The term unicorn has come to mean “any fabulous beast which many desire to find and possess, but which proves to be enormously elusive.”  You see the parallel to child psychiatrists, right?

The statistics back Cheryl’s experience up.  In 2014, a study published in the American Psychiatric Association journal Psychiatric Services showed that the average waiting time in major U.S. metropolitan areas to see a child psychiatrist was 25 days for a first visit. Investigators for the study tried to get an appointment with 360 outpatient psychiatrists in Boston, Houston or Chicago and found that after two calls, despite having insurance or saying they would be willing to pay out of pocket, appointments were nailed down with only about 25 percent of the doctors. According to the American Academy of Child and Adolescent Psychiatry, there are approximately 8,300 practicing child and adolescent psychiatrists in the United States — and over 15 million youths in need of one.

Besides the scarcity, there are other barriers.  Some psychiatrists aren’t taking new patients.  Others are leaving the field to pursue other interests.  Many others don’t take insurance of any kind whatsoever.  One mother called me several years ago to tell me she was trying to find a child psychiatrist for her teenage son.  She got a solid referral and was filled with hope.  When she called the doctor’s office she was told that he worked off a retainer system similar to an attorney.  You paid several thousand dollars up front and he billed against it.  When that was gone, you negotiated the method to pay once again.  She was shocked and called to ask if this was standard practice.

When child psychiatrists work at clinics, hospitals and medical groups, their services are available to anyone who has insurance accepted by that group, which often includes most health plans.  But many clinics have a policy in place which creates an additional obstacle.  Only children and teens who receive outpatient therapy at that clinic or medical group can access the services of the psychiatrist.  The thinking is that this will ensure that there is more coordination between the therapist and psychiatrist.  While some parents like this model, others report that the coordination simply doesn’t happen. And for children and teens who get therapy at an outside location, this policy limits the number of child psychiatrists available to help them.

Most pediatric medical specialists, such as pediatric cardiologists or pediatric endocrinologists, get paid a higher rate by insurance companies because they have the extra training and education needed to work with children and teens.  Unfortunately, this is not true for child psychiatrists.  The get paid the same rate as general psychiatrists.  Most child psychiatrists  go to college for four years to get an undergraduate degree, followed by four years of medical school, then four years of general psychiatry and finally a two-year fellowship in child psychiatry. A college freshman aspiring to be a child psychiatrist is looking at 14 years of training.  Their reimbursement doesn’t match that.

Parents value psychiatrists because they are highly trained and have greater breadth of experience at the end of those 14 years. When a child has uncommon reactions to medications, like Cheryl’s son does, a child psychiatrist can parse out whether the new symptom is the illness getting worse or a medication side effect.  They listen to parents talk about their child’s behavior and are great at figuring out how to prioritize this over that in the treatment plan.  They ask smart questions and are great observers.

With the passage of health care reform, our children get their yearly well child visits for free.  Their annual flu shots are not only free but you can often get them right away at a local pharmacy, a “minute clinic” or other options in your community.  None of this is true for mental health care by a psychiatrist.  Costs are high, waits are long and the search is filled with dead ends.  I think it might be easier for Cheryl to find a unicorn.  If she does, maybe she can trade it for a child psychiatrist for her son.

 

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Bucking Conventional Wisdom in Mental Health

February 4th, 2015

strollercliffMy two hot buttons are pushed every time the topics of psychoactive drugs and forced treatment are brought up. The two are interrelated. First, there is an over-reliance and near worship of psychoactive drugs in our culture. The other is the problem of power and coercion, forced treatment intended to be helpful but ultimately damaging.

I am a single mom of two boys, both adopted as infants. They are now young men ages 26 and 20. My 26 year old, whom I’ll call Joe, has big gifts and big challenges. I’ve worked in and around mental health for over 40 years. Not as a clinician, but often in situations that created relationships with people with the life experience of mental health diagnoses and extreme states. As my son’s challenges began to come to light in kindergarten and first grade, I tried to call on that life experience and my optimism for his future. I confess I also tried to “fix” him although I would never have called it that. I thought surely if we get a handle on whatever is going on now, we’ll know what to do!

I came into this journey believing medication was a last resort, and I got a lot of lip service in that regard. However, I couldn’t hold on faced with the countless professionals in all manner of fields who believed medication would necessarily be part of any plan for him. We started medication in fourth grade, took a holiday in 6th, by the end of 7th he was back on them and remained so until he was about 23. I kept a running tally of medications tried for a long time. Not sure I got them all – but I have 27 on the list, often in cocktails of 3, 4 or even 5. He has had 13 years, literally half his life, under the influence of medications. He’s now been off all medication for 3 years.

I decided to write this after another blog about the Murphy bill. It opened with a brief story about a 19 year old stopping his medications wanting to know what he is like without them. I wanted to tell the 19 year old that he can find out what he is like off medication, just don’t go cold turkey. Seeing bad results in 12 days doesn’t mean you need medications for life! If you’ve been on as long as my son was, take a year or even more to come off.

My son’s last drug was clozaril . We both say the best thing about clozaril was it got him off everything else. As the psychiatrist was attempting to bring the dose up, my son began saying no, he wanted to come down. Eventually he just stopped. He calls it cold turkey because there was that final day of “I’m done!” but in truth it was a long, slow taper.

Life hasn’t been without bumps since then. But we have a much better class of problems and he’s experiencing a better range of feeling and functioning than he ever did on the medication – any of them. He has some very dark times that come on him suddenly, but he’s learning to manage those better and better. Connecting with others on the journey, learning about hearing voices (www.hearingvoicesusa.org) and alternative views about his experiences have been powerful and healing. Most important, these so called alternatives have revived hope.

I want to move to another subject and that’s the power dynamics in mental health, and in parenting into adulthood. I don’t feel 18 should be such a cliff. It’s not a surprise. We all know that it’s coming. Joe was the kind of kid who played power trips all along and so I had to adjust and find ways to avoid that. One way for 18 not to be a cliff is to release and become more of an observer and supporter earlier. For me the dance goes on — suggesting, supporting, cajoling and whatever other approaches occur to me along the way. I’ve found the most powerful thing I can do is just be present. We go for car rides in bleak and dangerous times. I might sit quietly in the room with him as he talks things out. It doesn’t have to make sense to me. But curiously, eventually, it does make sense.

Once when I was in an appointment –at Joes’ request– to hear an update on medication, the psychiatrist started talking to him very gently about how critical it was for him to stick with the (medication) program. She told him if he didn’t, he’d lose judgment…he might not even recognize that he was sick. Although this was a stage when I didn’t typically speak, I did speak up. “That hasn’t been my experience. Joe does know when he is struggling more and he reaches out for connection. Sometimes not in the greatest way, but he does know.”

I’ve thought about that brief conversation countless times, and it becomes more important each time I hear it in my head. I think it’s a terrible message to tell someone that they don’t know themselves, can’t know themselves – and believe me, I know when it looks like that! People can make sense of their experience and can be supported through extreme states without force. In fact, I believe force is tremendously damaging and I won’t play that card. No AOT or Roger’s Orders for us. There’s much more I’d like to say, but I’ll save that for another day.

Our guest blogger Marylou Sullivan is the parent of a young adult with mental health challenges. She is the Executive Director of the Western Massachusetts Training Consortium. Ms. Sullivan is a passionate advocate for people with disabilities.

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My Anger, No Longer My Danger

December 22nd, 2014

angrysadgirl4I have been angry for a long time, and I have let that anger overpower me without actually thinking about it. All I knew was that as awful as I felt, it still felt good to have something other than myself be in control, and I held on to it like a lifesaver while I tried to keep from drowning in the sea of heartache, loss and betrayal that became my life. Although I looked to the anger to save me, and even grew to kind of love it in a weird way, it didn’t come without a price.

With that anger came long and severe bouts of depression. Some days I was so desperate to stay home that I deluded myself into believing that I was physically ill, giving me the perfect excuse to cancel whatever plans I had for the day, or the entire week. I cried often, too; at home, in the car, in the grocery store, in my sleep. Everywhere. I knew I was angry and I knew I was in pain, but I didn’t know what I needed to do in order to make it stop, nor was I sure I wanted it to stop. I was comfortable in my misery. Of course, people were concerned and I got the attention I wanted and needed by outwardly expressing my anger. Other times, I was less dramatic, even secretive, and relied on my self-mutilation to communicate to those around me that I was in pain.

Very recently, a family friend took their life, and it was devastating and a real shock. I know what you’re thinking- this was my turn around. This was that life changing moment that made me realize that I didn’t want to be angry and depressed anymore, but that couldn’t be further from the truth. Their death, their choice to take their own life made me think that if it was so easy for them to just end it, then why couldn’t it be just as easy for me?

I started obsessing about the idea of suicide. I didn’t exactly have a well thought out plan, but I thought that if I could just do it, get it over with, everything would be better. So I spent hours on the internet researching everything I could about suicide- the history, famous people who’d done it, different methods. To be honest, I was completely frightened by the fact that I was actually considering suicide, but I was also being extremely willful. I felt like this might be the best option. It was either that or live in pain and perpetual confusion about how I was feeling for the rest of my life.

So I started a Pro and Con list to see whether the pros or the cons about suicide would outweigh the other. Some of the cons: I would never see my family again, never see my boyfriend, my rabbits or my friends. I’d miss the trees, the stars, the moon and Harry Potter. And the pros: no more depression, no more crying, no more hurting my loved ones, no more hurting myself, and best of all, I’d get to see my father. And that’s when it hit me. The reason I’d been so angry everyday for what seems like an eternity was because I was holding on to the day my father died, every day after that and all of the events that transpired due to his death. I was angry at him for leaving me, I was angry because it was, and still is, unfair that I’ll never be able to see him again and I was angry because life was hard without him. So I held on to that anger because it was like holding on to him, and if I let go of that anger, well then I was letting go of him, too. I thought that if I didn’t get upset while thinking about him, if I didn’t cry, then I didn’t care about him, and that somehow made me a horrible daughter.

After a lot of reflection and a lot of talking and exposure, I think I’m starting to see that I can live my life while missing my dad. I still have days that I can’t seem to shake this insurmountable grief that I have, but I’m finding that I am enjoying things that I haven’t been able to in a long time. I’ve ceased my research on suicide and instead replaced it with research on holistic living, something my father also cherished. I wouldn’t say that I’m happy now, that my anger is completely gone, but I’m getting there, and I can’t help but hope that my father would be proud.

Chandra Watts is our guest blogger. She is a young adult who draws on her own life to change how the world sees mental illness. She is one of the founding members of Youth MOVE Massachusetts.

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Why children are not little adults, take two

December 8th, 2014

Maria's granddaughters“Children are not little adults,” I said at a recent meeting.  “They go home to families, not their own apartments.  They go to school; they are not employed.  And when they have mental health problems, it’s episodic, not chronic. “

I haven’t had to say that children are not little adults for quite some time, but I find I am saying it a lot lately.  When I first began this work, there was a wonderful paper written by Trina Osher (who was then the policy director at the Federation of Families for Children’s Mental Health) called “Why Children Are Not Little Adults.” (Click here to read it.) It was targeted to managed care companies and I quoted it a lot.  We were seeing the beginning of a shift to insurance (including Medicaid) as a primary funder and designer of treatment and services for children and teens with behavioral health needs, a shift that continues to this day.

It was important that those creating and approving services understood that what worked for adults and was appropriate for them might not work for children.  Children, Trina Osher wrote, “continuously require the support of their parents, siblings and other family members.”  She emphasized that there must be respect for the family’s culture and beliefs.  Children have a need not just for food, clothing and shelter, but for protection, which makes them especially vulnerable. Their mental health and physical health needs are intertwined.

Many of these ideas became familiar to others – providers, funders, state agency staff and educators.  At meetings, I often heard others articulate them so I didn’t have to.  Now, fast forward to today.

Today, we are having discussions about health homes and integrated care.  We’ve expanded our understanding to recognize that children and youth who have experienced trauma or have co-occurring medical or substance use needs should be included when talking about children with mental health needs. Yet, I find I am reminding people once again that children are not little adults.  Why is that, exactly?

It’s easier to design new systems (such as integrated care) for adults and retrofit children and youth into them.  It’s more efficient to create priorities for the mental health system overall and say children are included as SAMHSA has, instead of making children, youth and families a priority all its own.  It’s less trouble to pay for traditional treatment that works (at least sometimes) for adults, such as inpatient and outpatient and call it a day as many private insurers do, instead of reimbursing treatments that work better for children.

However, there is one place where I still don’t have to remind folks that children are not little adults.  That is any table where pediatricians sit. Like parents, they see children change and grow each year. Like parents, they encounter the many systems (child welfare, education, juvenile justice, child care) that they need to communicate to and coordinate with.

In a 2010 policy statement on family-centered medical homes, several well-known pediatricians outlined the issues that are unique to children and families when designing and providing care.  They contrasted them with the needs of adults, where the focus is on maintaining health, making decisions for oneself and moving toward recovery.

The pediatricians call the unique issues for children “The Five D’s. “ Here’s a quick recap:

1. Developmental changes. Children grow and change and their ability to understand, self-manage and participate grows too. Every parent knows this well. Treatment and services should maximize this amazing potential rather than focus on regaining lost skills (as with adults).

2. Dependency. Children are dependent on parents and other adults (they don’t go home to their own apartments, remember?) which calls for a collaboration with their family. Coordination with early childcare and schools is essential. This dependency decreases as children grow older and their autonomy increases, which is another developmental change.

3. Differential epidemiology. Simply put, pediatricians don’t see many chronic health conditions such as high blood pressure, diabetes and heart disease in children while they do see a fair amount of obesity, mental health conditions and asthma. Big need here for prevention and care coordination, which are not emphasized in the adult world.

4. Demographic patterns. While poverty in elderly populations has dropped dramatically in the last 40 years, child poverty is little changed. As a group, children are also more diverse than adults (Horn, Beal, 2004). Poverty and diversity contribute to many children being vulnerable to poor health and poor quality of care.

5. Dollars. While overall costs for health care for children are small compared for adults, there are “50 different ways” to pay for it. The good news is an investment in children can produce substantial savings over a child’s lifetime.

The bottom line is that we are once again seeing the health care system shift. When “Why Children Are Not Little Adults” was first published, we were seeing the growth of managed care in both private and public (Medicaid) insurance. We know that the treatments and services are that available to children, youth and families are often determined by what funders pay for. Today’s discussions are also groundbreaking. New approaches to care are being designed and funded including medical/health homes, integrated care and the possibility of expanding mental health care under federal mental health parity.

To make that happen, we need parents and pediatricians at the table. I know they will talk about what works for children and youth and why it’s important to include families. I know they will talk about families from diverse cultures. I know they will not confuse the needs of children and youth with those of adults. And they shouldn’t. We simply can’t afford to.

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Lapse back into depression

April 25th, 2013

Sleeping teenI am widely known for my past experiences with mental health. Since the age of 15, I have been very outspoken about what I’ve been through, what I’ve been diagnosed with, what medications I’ve taken, what works, and what doesn’t. Everyone knows that with the help of my parents and a large support team I’ve gone through hell and back, survived and become an advocate for youth like myself who don’t feel like they have a voice. I have been told that I’m one of the lucky ones, brave, and most often, strong. These days, I feel anything but.

For the last year and a half, I’ve been battling a severe bout of depression, striving to remain resilient, but slowly sinking back into the all too familiar pit of despair that I’ve grown to hate- and woops! I’ve forgotten my ladder, so climbing right back out isn’t an option. I’ve been trying to claw my way up the hard way but without much success.

It’s not hard to discern when or why I became depressed this time around. One of my biggest supports and best friends was my father and he died unexpectedly in April 2011. Following his death, it seemed like everything fell apart- my family, my structure, my life, my sanity. For the first time in my life, I became a caretaker, as my disabled mother became my responsibilty, and I had little-if any- support in taking care of her. My boyfriend and I moved into an apartment with her in an unsafe neighborhood where we endured a lot of family drama, multiple break-ins, and all the while, I tried to find healthy ways to mourn the loss of my father. It was impossible because I found that I was so busy taking care of everyone and everything else that I forgot to take care of myself too.

For me, this lapse back into depression feels like a slap in the face, especially remembering how hard I worked to get out if it in the first place. I have to remind myself often that sometimes this does happen, and that I can’t beat myself up over it, but that’s hard to do when I get mad at myself for staying in my pajamas all day, wrapped up in a blanket and refusing to leave the house. I know I can’t live in my bed forever, and it’s going to take a lot of effort on my part to find the motivation to function again, so I’ll continue to live day to day, one step at a time.

Chandra Watts is our guest blogger.  She is a young adult who draws on her own life to change how the world sees mental illness.  She is one of the founding members of Youth MOVE Massachusetts.

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