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Yolanda and her law

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.

Diagnosing very young children

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.

Say it right

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.

Them’s Fighting Words

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.

We Don’t Call Them “Wait Lists”

Every parent knows what it’s like to wait for that call back from the doctor when your child’s fever has jumped into the stratosphere.  Or the call that tells you what the strep culture showed or if the x-ray revealed a broken bone.  If that call doesn’t come right away, you experience a lot of nail-biting anxiety and a sense of frustration watching your child feel just miserable.

Now imagine that the call you are waiting for is because your child’s violent moods are holding the whole family hostage.  Or your son is doing risky things and just doesn’t care about his physical safety.  Or your daughter talks about death and dying in a way that sometimes makes you think she’s trying to shock you and other times gives you a frightening glimpse of her inner pain.  These things are urgent symptoms just as  much as a fever is.  It hurts as much — if not more — to wait for that call while watching your child’s emotional pain.

Famillies of children with mental health needs have been waiting in this state  for decades.  For more than ten years, my organization has been documenting how long parents have waited for an appointment with a psychiatrist (months), a therapist (often weeks), a hospital bed (hours or even days) or a therapeutic school placement (weeks or months again).  However awful the waits, there have been ways to approach them.  Parents are told there is an opening for their child on a certain day or that there are 3 children ahead of theirs on the wait list.  After all, this is good customer service. If you know how long it’s going to be, you can draw upon that last bit of fortitude and hang in there for a week or month or however long it is.

In 2006 federal judge Michael Ponsor ordered changes in the way Medicaid services for children and youth are delivered in Massachusetts.  At the heart of that order is a requirement of “reasonable promptness” when services are medically necessary.  More than 2000 children and their families are enrolled in the new coordinated community-based services offered through the Children’s Behavioral Health Initiative (CBHI).  Some families experience a fast response to their phone calls and requests for services.  Others, however, are having a much worse experience.

Some families are calling to apply for services and never get their calls returned.  Others go through the initial intake process and then hear nothing for weeks.  Still others are told that there are no openings near their home; instead they must go to another area and see if there are openings there.  When one parent asked where her child was on the waiting list, she was told that “We don’t call them wait lists.”

Waits are nothing new for families whose children have mental health needs in Massachusetts.  While it’s disappointing to see that the new CBHI services have lengthy waits in some parts of the state, it’s a puzzling strategy to eliminate the use of wait lists.  Most of us use wait lists as a way to check in; to see if there is a system for triaging should our child become worse and as a mechanism to ensure fairness (first come, first served). 

Living with a child who has mental health needs includes a lot of uncertainty.  Many parents wake up each day and worry, Will it be a good day or a terrible one?  A system where there is no way to gauge just how much longer you have to hold on adds to the burden for parents. Waiting is hard enough all by itself.