Today is April 19th, or Patriots’ Day, here in Massachusetts. It is a holiday unique to our state and Maine, which was once part of Massachusetts. The Boston Marathon is run, the Red Sox play a day game at Fenway and the battles of Lexington and Concord are re-enacted. (Much as it sounds like it, it is not a celebration of our New England football team.)
The events we celebrate took place in 1775. Even though that’s 235 years ago, there are still lessons we can learn from those events. Lessons that are still relevant as we all work to improve the mental health system for children and their families.
All of us are familiar with Paul Revere’s ride. But did you know that Paul Revere was able to be successful in rousing the countryside because he had played a part in the Tea Party (the first one) and had strong connections to other local leaders? He spread the word of the British advance by stopping at the houses of key people in each town along his ride. In other words, he was part of a network of leaders who were able to push forward change.
Most of the citizen soldiers who came forward that day, the Lexington and Concord minutemen, were untried and untested. Like many of us, they were scared but followed through anyway. They believed in and fought for rights and freedoms they just didn’t have under British rule. Because of them, many Americans of that time began to believe that it might be a worthy idea to fight against a system that wasn’t working for them and fight for one that represented their values.
This was an era when most European countries — and the colonies that would later become countries — were ruled by kings or queens. The British were considered the greatest military power of their time. Yet, the men who came out to fight that day believed that certain powers and rights rested with the individual and could only be given freely to form a union. Their power sprang from the individual taking action, not conferred by a monarch.
So those of us who advocate for a better world for children with mental health needs and their families can learn three key lessons from the events that we celebrate each Patriots’ Day:
First, be a networker like Paul Revere. Find other leaders and strengthen the network that can create change by being part of it.
Second, be ready to fight in small and large ways for the ideas and principles you value. Only by insisting that they are important can we alter the mental health system for children and families a little at a time.
Third, remember that the power to change things lies with the individual. It’s easy to focus only on our daily challenges but we are all able to move things in the right direction, even if it’s just a little at a time.
Have a happy Patriots’ Day!
The new DSM 5, the bible for psychiatric disorders, intends to do away with a bipolar diagnosis for many children and teens. A new diagnostic category, temper dysregulation disorder (TDD) is being proposed and would include symptoms of bipolar disorder. The new diagnosis of TDD (does this really denote a serious medical condition?) will surprise and dismay many parents. Families usually struggle for years with their child’s unpredictable behavior, intense moods and volcanic temper tantrums while strangers, friends and family assume that what is wrong is inadequate parenting. A bipolar diagnosis has helped many parents get treatment, school services and a recognition that what they are dealing with at home is serious stuff indeed.
The DSM is many things to many people. Mental health clinicians rely on it to help form an accurate diagnosis. Insurers use it to authorize payment for medically necessary treatment. Schools often cite diagnoses in the student’s education plan. Even juvenile courts use it to better understand the behaviors that might bring a youth into court.
The DSM 5 Child and Adolescent Disorders Workgroup has listed several reasons for the recommended change. The rise in prescribing psychotropic medications for children is one. The group also cites a study that “found a 40-fold increase between 1994 and 2003 in the number of outpatient pediatric psychiatry visits associated with the diagnosis of BD [bipolar disorder].” Yet, a 2007 study found that youth released from the hospital with a primary diagnosis of bipolar amounted to less than one in a thousand.
But in 1994, practically no children were diagnosed with bipolar disorder, so any increase from “almost nothing” would be startling. In the early 90s, I was running support groups where parents would share stories with each other about their child’s moods (from rage to extreme silliness to wanting to die), the nightmares that came almost every night, the rigid food preferences and risky behaviors. Most parents worked, had little support and felt overwhelmed by the impact on their family. Parents were told their children had ADHD, anti-social personalities, were oppositional or had conduct disorder. Somehow these diagnoses didn’t capture the gravity or complexity of the situation.
The DSM is not a coding system set up for the convenience of the insurance industry or to create a shorthand for schools. Yet, a child must often be labeled “something” in order to get services. We all give lip service to measuring the “functioning” of a child but that still doesn’t open doors or get services paid for. The reality is that parents often have to fight for services. We may decry the need for labels and powerful diagnoses, but at this point in time it’s what we have. Those diagnoses have to increase access for children as well as describe their symptoms.
Most of the children and youth who now have a bipolar disorder diagnosis require medication, therapy, special education strategies and a loving, dedicated parent who is willing to do battle to obtain the needed treatments and services in order to improve things. It’s a diagnosis that does not imply that “bad” parenting is the cause, which allows parents to be partners in creating and carrying out a treatment plan, just as they would if this were any other medical illness. It also does not imply the child is to blame, which is often equally important.
Any new diagnosis proposed by the DSM 5 needs to send a clear signal to insurers, schools and the general public that bipolar in children is very real and very serious. Parents already know this. There is still time for comments at www.dsm5.org until April 20, 2010.
Yes, there’s been a gap between the last post and this one. I got a house ready to be sold, sold it and am getting ready to move. It certainly devoured a lot of my time. But I have been thinking about children’s mental health a great deal and the posts will keep on coming!
One of the new services for families in Massachusetts is the mobile crisis initiative or MCI. Mobile crisis — sounds like something that will come to you when you have a crisis and stay there till the worst has passed, doesn’t it? Except it doesn’t always work like that.
This service has incredible potential. And in some parts of the state, it helps families whose children have a behavioral health crisis enormously. The intake worker “gets it” and sends out the team, the team goes where the child or youth is and figures out what to do, and the family has follow-up for 72 hours if that’s what they need. The team includes a family partner whose role is to ensure that a family’s perspective and choices are heard loudly and clearly and included in the solution. Until these new services began, the only “mobility” anyone ever saw was the crisis team going from their office to the hospital emergency department and then traveling back to their office.
The tricky thing about mental health care is that how well it works relies heavily on relationships, even very short term ones. Clinical skills count as does experience and expertise. But the expectation that each person has a job to do and is doing it as best they can is what builds the bond that can make things work.
Most crises, as any parent can tell you, happen at home and after business hours. Sure, there are times when a child or youth becomes suicidal or out of control at school or somewhere else. But a huge percentage of mental health crises occur at home. The parent sees what sets things off, usually knows what isn’t going to work ahead of time and can judge what’s outside of their own ability to handle things. So, they call in reinforcements.
Sometimes problems start with the phone call. The intake worker decides that the parent should be able to “manage” things at home. Or advises the parent that the MCI team can’t come out and they should try the emergency department instead. Sometimes new problems come with the team themselves. In one instance, the mobile crisis worker remarked, “This child is running the house. What are you going to do about that, Mom?” In these cases, the service may have changed but the attitude hasn’t.
Massachusetts Behavioral Health Partnership, who oversees the new mobile crisis services, has been working hard to improve them by offering training, consulting and other assistance. For some provider agencies with MCI teams, this is just what they need. Others, however, don’t seem to have the committment to adopt this new model and, instead, continue to do business as usual.
One father wrote in an email recently of his experience with the MCI team in his area. He called and outlined the escalation in his son’s delusions and behaviors and asked for the team to come out. Instead he was told to go the emergency department. After several hours, poor service and little help, a supervisor apologized for making his son and he go through it all. “I told them that the ER visit wasn’t needed, and now all we got was an apology for having to go through it, he wrote. “Parents need to be listened to from the beginning, not apologized to at the end. “
So what makes an expert, well, an expert? It’s certainly a step up from just knowing a lot or being acquainted with the facts. According to the dictionary, an expert has skills or knowledge that’s gained from training or experience. Usually, those skills are in one area or that knowledge is focused on one particular subject.
Let me say it straight out: parents are experts about their children and about their families. And that expertise should be recognized and respected. Far too often, it is not.
We all seek out experts when we encounter a problem that takes special skills to solve. If your car makes a strange noise or the check engine light lights up, you might go see a mechanic. If you encounter a legal problem, you might seek out an attorney. If that mechanic or lawyer finds out you own a bicycle shop, he could very well ask your opinion about selecting a new touring bicycle.
From the very first moment, a parent learns everything she can about her child. She observes her child closely and is often fascinated by what makes him laugh, what jump starts his curiosity and what works for him each step of the way. She notices how he carves a place for himself and how his ups and downs affect the entire family. She slowly builds a body of knowledge. In short, she becomes an expert about her child.
When parents encounter a problem that worries them, they seek out knowledge and advice. They might turn to a doctor, a teacher, a therapist or a relative. They bring their observations but also a hard won understanding of their child. However, their often expertise isn’t acknowledged.
A number of years ago, a colleague of mine told me how she took her son to a first therapy appointment. The therapist explained his ground rules around confidentiality and how often (or not) he consulted with parents. He ended by saying that if her son divulged he’d experienced abuse or neglect during the therapy appointment, he would have to file a report. My colleague, without missing a beat, replied, “Likewise, doctor, if on the way home my son divulges that any abuse occurred during his appointment I, too, would have to report it.”
The therapist was startled and somewhat taken aback. In setting up the “ground rules,” he was not thinking of my colleague as an expert partner he should treat with respect; instead he was telling her the way things would be. While she agreed he should act if her child’s safety was threatened, she also knew that her son would benefit more if her understanding of him was included.
In our state and in the country, we are shifting away from traditional services to home and community based services. In order for those services to be successful, they must be family driven and youth guided. When family driven care is at its best, families are considered expert partners when planning treatment and making decisions. It requires a shift in attitude and for some, a leap of faith.
To be successful, we have to ask: So, who is the expert? What do you think?
Most of the conversations I have with other parents include a description of the services that didn’t work. Families often wait for a treatment only to find that it just doesn’t match their child’s needs. It might be the wrong kind of therapy or the wrong school plan. It might be bad advice (it’s just a phase) or or a poor evaluation. But whatever it is, it is a waste of time and money.
Most parents start by giving it a try. You go to the appointment (especially if you’ve waited for weeks) with first hope, then determination. You might wonder why someone thought this was a good match for your child or your family. You begin to think that even online dating services offer a better profile of what you are getting into. But you stick with it, usually long after you know that it isn’t what your child needs.
In 2006, Judge Michael Ponser issued a decision in federal court in the Rosie D case. He had heard weeks of testimony about what was not working for children and families. A pivotal part of that decision was about assessing children so that they would get services that matched their needs. He said, “Without a clinically appropriate, detailed assessment of a child, proper treatment is obviously impossible.”
Out of this decision came a plan and that plan included using an assessment tool called the Child Adolescent Needs and Strengths or CANS for short. The CANS is intended to be filled out with the child’s parents and help inform a process to choose the best course of action for a child and his or her family. It is crucial to involve families in the assessment process. After all, they are the experts on their children and their families. Parents know what works and what has been a dismal failure.
At this point, thousands of clinicians in Massachusetts have been trained to give the CANS assessment. We know that numerous children and youth have received this assessment (sometimes over and over again) and some clinicians have embraced it while others find it cumbersome. But what we don’t know is whether it is leading to more services that match the child’s and family’s needs.
And that’s the bottom line. Parents make sacrifices for their children every day. They invest their time, money, energy and emotions so that their children will get the care they need. But they want that care to be effective. One father I know says that he just can’t believe how ineffective the mental health system is for childen. He notes that in the business world, some of the programs would go out of business because of poor performance or lack of customer satisfaction.
What we don’t know yet is whether the CANS is leading to more effective services for children with mental health needs and their families. That’s the real goal. As we hear of the number of clinicians trained, assessments given and other milestones, let’s not lose sight of it. In the end it’s the only number that matters.
If Yolanda were alive today she would be wowing us all. She was articulate, engaging, moving, smart and courageous. And she, like many other young people, battled an illness that can bring formidable challenges. There are many other young people who are coping, just as she was, with a terrible struggle within them. And alongside each one of them are the people who know and love them.
Yolanda died 2 years ago today. In an impulse no one still quite understands, she committed suicide one January night. Her battle with bipolar illness was over. If she were still here, she would now be 18, once an age of increased privileges. Today, many of those privileges come earlier or later, but it is still a milestone year.
Yolanda left a legacy. In May 2007, she went before the Massachusetts legislature and spoke about her struggles with bipolar disorder, the system that often didn’t meet her needs and her own desire to make a difference. She knew that the system that provided mental health services to children and teens needed some changes and she made sure she was part of seeing those changes begin.
Now, it’s pretty scary to go before legislative committees and talk to them. And this was a large hearing in a huge auditorium. Yolanda had to sit and speak to a committee sitting raised above her with 300 people listening behind her. It took courage, poise and determination. It’s unusual for legislative committees to hear from teens. They hear from heads of companies and advocates like me and they certainly hear from lobbyists. So they paid attention to every word she spoke that day. I later talked to members of that committee and they remembered her verve and poise.
On that day, and probably many other days, Yolanda was an advocate. I looked up the definition of advocate and the dictionary definition is, “to speak or write in favor of; support or urge by argument; or to recommend publicly.” Because of her amazing qualities, the bill she testified for became known as Yolanda’s Law and was passed by the legislature in one session, a remarkable feat.
Even though Yolanda’s influence lives on through “her” law, her presence is felt strongly in other ways. Her mother, Maryann Tufts, says that Yolanda “speaks to me often in amazing ways. Through every kid I see who is struggling to get through their day, to make friends, to feel better, to fit in. We miss her so much, but know that she is still so present in every way.”
Yolanda touched many lives. She was a remarkable young woman. She was loved by her family, her friends and touched so many lives. If love alone could have kept Yolanda here, she would have lived to be a hundred years old.
Last week Rebecca Riley’s mother went on trial, accused of deliberately overdosing her 4 year old daughter. Although most of the media coverage has so far been focused on the facts, I keep waiting for the other shoe to drop. What might also end up on trial is the practice of diagnosing and treating young children.
As little as 10 to 15 years ago the public found it difficult to believe that elementary and middle school children could experience depression or be diagnosed with mental health disorders. Childhood is supposed to be a time of happiness, right? The combination of increased media coverage, targeted studies and consequent data have helped increase public acceptance that children can and do experience depression, anxiety and mood disorders as well as ADHD. However, the public doesn’t really accept that young children can have mental health problems and has no idea what that looks like if they do.
Eight years ago PAL and Health Care for All issued a report, Speak Out for Access. We surveyed families whose children had identified mental health needs about their experiences. We were surprised to find that almost half (48%) of the parents who responded said that their child showed signs of mental health problems by age 4. Let me say that again: almost half the parents said their child with mental health needs showed signs or symptoms by age 4. When they brought their worries to their child’s doctor, many felt their observations were dismissed. Some felt that earlier treatment would have reduced many of the problems they faced later.
This is a topic that is near and dear to me. When my own son was three, he had a bedtime ritual that lasted 20 to 25 minutes. It involved an empty spray bottle and a series of spots we had to spray to banish monsters. If we missed a spot or were interrupted, the ritual had to begin again from the beginning. He cried and was terrified if we skipped the ritual and then couldn’t fall asleep — often for hours. His pediatrician assured me he would grow out of it. He did, but other fears and rituals immediately took its place.
Last Friday, a journal article authored by Mark Olfson of Columbia University, reported that the number of children aged 2 to 5 who have been diagnosed with bipolar disorder and treated with psychiatric medications has doubled over the past decade. The study also noted that fewer than half the preschoolers had received a mental health assessment or a therapy visit, which is worrisome but unsurprising. After all, where do you go to find help for a 3 year old?
There is a difference between prevalence (how often something is diagnosed) and incidence (how often something actually occurs), although we confuse the two. According to the journal report, young children are being diagnosed more frequently. According to parents in our report, a large percentage of children, later diagnosed with mental health disorders, show symptoms quite early.
Parents want to help their children, especially when they see them hurting. They spot the intensity or unusual length (like my son’s ritual) of a behavior. A diagnosis often feels like a double edged sword; it can open doors to treatment and services but brings the stigma of a label.
One of the greatest challenges faced by families and advocates alike is finding the “right” vocabulary. If you use the right words, your message will be clearly heard and, hopefully, welcomed by the listener. Words are powerful things. With certain terms, we can reframe the discussion and hope to see a reframe of the solutions.
Families learn to use jargon to talk to clinicians or insurers or school administrators from the beginning. We talk about disorders instead of needs. We discuss IEPs, discharge plans and neuropsychs. We hope words will help us understand this new world and we hope that using its language will build bridges. But along the way we find that using the terms others are comfortable with doesn’t usually move them to change.
Sometimes parents and advocates alike make a conscious effort to reframe the discussion. Family organizations such as PAL might insist on reframing a concept such as “mental health treatment” into “family driven care” in order to push for changes in how mental health services are designed. “Mental health treatment” conjures up an image of a child and family passively receiving treatment selected and delivered by an expert, while “family driven care” describes a model where families actively participate and are recognized as experts too. We hope that words will lead to actions which will result in better services and outcomes for our children and youth. And former “experts” will look at families and youth differently — as informed partners.
But there is another reason to choose words carefully. Parents and youth know how they feel when certain terms are used. Some words are make us feel respected while others feel derogatory. Some terms take away power while others make us feel powerful. Describing a family as dysfunctional, for instance, robs parents of their strengths. They feel judged, unworthy and unable to change that perception. On the other hand, when a family is described as a “resource” for their child or a “strong” family, they feel empowered and valued. As one parent so eloquently put it, “I just want to be seen as part of the solution, not part of the problem.”
One of the first people who taught me the importance of choosing the “right” language was Trina Osher. Trina is the president of Huff Osher Consulting and was a driving force in designing terms such as family-driven care. She once wrote in an email, “Make it your mission to bridge the vocabulary across systems. It is necessary to introduce our frame in ways that make it possible for new audiences to relate it to their frame and see the value in making the paradigm shift that goes with the new vocabulary.”
Choosing the “right” words requires discussion and honesty. Do we select a specific word to expand eligibility? To restrict services? To engage families or alienate them? To support or disempower youth? Language is important to families. Parents share stories of the words others use to describe their child, their family and their experience. We know it’s important to hold people accountable for the words they use. We can gently remind or strongly insist on certain terms.
But either way, words matter.
Parents often call their experiences with the children’s mental health system “war stories.” Others talk about being “in the trenches” or describe how they “battled” the school system or “fought” to get services. Other parents, listening to these accounts, nod their heads in agreement. Many feel as if they really are at war or at least engaged in a prolonged battle.
We all organize our social experiences using “frames.” According to sociologists, a frame is a model used to interpret events or experiences. We then depend on that model to understand and respond to new events. Families are thrust into the world of children’s mental health feeling unprepared and overwhelmed. We try to understand not only the “system” we must navigate but also interpret our experiences in a way that makes sense and helps us strategize. A great many families find that a framework using combat terms resonates with them and matches their experiences.
In the theory of framing, there are 3 tasks which help mobilize us. First we diagnose (we identify the problem and figure out who or what is to blame). The second step is to predict or figure out what we will do (we suggest solutions and strategies). The last step is motivational framing (where we have a call to action).
When my child was seven, I had an experience that that mobilized me in just this way. My son was terrified to leave the house (which made going to school nearly impossible and most days were filled with either rages or suicide threats). My school system agreed he needed to be evaluated and the school psychologist ran a battery of tests. I was sure that she would see that he was in terrible emotional shape and would help figure out what he needed. We went over the test results and she noted that he had a “very high IQ.” She smiled at me and I smiled at her, sharing that he had this wonderful strength. She then looked me straight in they eye and remarked, “His father must be very smart, I would guess.” While my jaw dropped, she went on to say that his intelligence would overcome any emotional challenges and she was not recommending any services.
Like many parents, my approach and understanding of the system changed radically in the next few days. I had expected to create an alliance with the school psychologist and instead found we viewed things very differently. I needed to figure out strategies to get my son the supports he needed. Most of all, I shifted from expecting consensus to gearing up for advocacy. And that was successful for me.
Framing is a powerful tool for each one of us, whether we use it consciously or not. When we frame our experiences, it can affect the outcome. This is one of the reasons families use the concepts of gearing up for battle or defending their children. It empowers us, creates focus and we all feel as if we are comrades in arms.
With the new Children’s Behavioral Health Initiative, Massachusetts is changing how we deliver services to children with mental health needs and their families. The new approach is based on collaboration, coordination and the creation of a team for the child and family. Words of war won’t fit as well in this model. However, any new “frame” must reflect the realities that families experience and seem relevant to our values. If not, it simply won’t be adopted.
Can we transform our framing? Only time will tell.