Hold On, It's Not Over

A Blog about Children's Mental Health in Massachusetts

My top stories on children’s mental health in 2010 — what are yours?

We are all looking forward to 2011, making our resolutions and hoping, as we always do, for a better year. The end of the year is also the time when we look back before we look forward. There were many events in 2010 which will impact all of us who parent children with mental health needs or work with them and their families. Here are my picks for the top stories. What are yours?

#1. The health care reform law passed and began to offer protections for consumers across the country and the promise of coverage to the uninsured. The passage of the Affordable Care Act was signed into law by President Obama in March and some portions of the new law are already in effect including that young adults can remain on their parents’ insurance plans. The law requires mental health to be covered and people cannot be turned away or dropped from coverage because of pre-existing conditions. Although Massachusetts has had health care reform since 2006, many families have insurance that is solely regulated by federal law and this will change things for the better for them.

#2. Federal mental health parity was an under-the-radar story which will also have a major impact. The new federal mental health parity law, enacted in 2008, went into effect in 2010. For the first time, mental illness must be treated by insurance companies in the same way as other chronic conditions, like diabetes and hypertension. Parity is incredibly important to those affected by mental health condiditons, yet it was not widely noted while health care reform was debated. Again, while Massachusetts has had a mental health parity law, many families will only see changes under federal parity.

#3. Following an outbreak of LGBT teen suicides across the country , columnist Dan Savage launched the “It Gets Better” campaign in September, which lets gay teens know that if they hang in there, life will improve after high school. It’s a brilliant campaign and thousands of people (both celebrities and regular people) have posted personal stories on YouTube in an effort to offer hope to countless LGBT youth worldwide and shine a spotlight on the harm caused by bullies. LGBT youth are up to four times more likely to attempt suicide than their heterosexual peers according to the 2006 Massachusetts youth risk survey.

#4. The bullying and subsequent suicide of Phoebe Prince in January went from a local tragedy to an international media storm about bullying in schools. The tragedy of her death came just months after the suicide of 11-year-old Carl Walker-Hoover of Springfield and galvanized advocates, lawmakers and the media to advocate for change. In April, the Massachusetts Legislature passed a new law mandating that every school system in the Commonwealth come up with a plan by the end of the year for dealing with bullying issues.

#5. Another local event which captured national media attention was the trial and conviction of Rebecca Riley‘s mother (in January) and father (in September). Rebecca Riley was found dead on the floor of her home in 2006 from the combined effects of Clonidine, Depakote and other medications. Each of her parents was found guilty of murder. Many national and local reporters wrote and narrated stories that doubted the existence of mental health issues in very young children as well as the use of medication. Unsurprisingly, a complicated situation was pared down to a discussion of mental health, medication and young children.

#6. One of the most important stories of 2010 never got media coverage. The first full year of the implementation of Children’s Behavioral Health Intiative, although imperfect, continues to provide Massachusetts families with home and community based services on a previously unheard of scale. Nearly 70% of children and teens are receiving behavioral health screens at well-child visits, and almost 6500 children and youth have received care coordination with nearly 19,000 experiencing at least one of the new remedy services. Families report that they feel they are considered a partner in their child’s treatment and are particularly satisfied with the services provided by a family partner. What is striking is that while other states have created similar services, none has done it on such a scale. CBHI is available across the state to children with signicant mental health needs on MassHealth.

#7. In October, the Boston Globe reported that many children are deemed "too acute" by some hospitals when asked to consider an admission. Children and teens who are violent, hallucinate or have complicated psychiatric histories are most likely to be turned away. Just last week I heard a story of a teen waiting in an emergency room after being turned away from hospitals in Massaachusetts and two other states. Sounds like a story we’ll hear more of in 2011.

These are my top stories. Did I miss any or are there any that should not have made the list?

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January 1, 2011 Posted by | children's mental health | , , , , , , , , , , , , , , , , , , , , , , , | 2 Comments

Dear Santa

Meri Viano is a guest blogger for Hold On, It’s Not Over and the mother of three children. This is her letter to Santa.

Dear Santa,

I have been exceptionally good this year. Well, at least I’ve tried really hard to be good. But there are all sorts of things that can get in the way.

I’ve been doing extra chores this year. It’s hard to pick up after children that hide things, especially cookie dough behind the cabinets, snacks in drawers, and even the papers that get ripped up into a million little pieces because it is an “activity” that keeps one of my kids busy. It can take a huge amount of planning to get the chores done and also manage to pick up and move pictures to the holes in the walls so that the visitors do not feel they have entered a “unsafe ” place.

I am not even talking about the singing that I have to do to get my daughter to eat, or the dancing I must do to get her to drink. It is difficult being the mom and the entertainer. Combining discipline and building positive self esteem is hard. NOT like the Italian home I grew up in.. you knew if the wooden spoon was raised you ran!

I have also tried to go grocery shopping at 11pm so that my children are sleeping all nestled in their beds and limit the number of customers who point at me and say “That”s the mom with the unruly child.” It also helps with the child who feels he needs to eat certain things to keep the voices in his head away.. if you drink lots of water you will not hear the scratching on the window that is not there.

I am trying to be nice to everyone but Santa, have you ever called Mobile Crisis? They want you to schedule a time for the crisis! When you call, they seem to always say it is shift change and they won’t have a clinician in for four hours. How do you pause a crisis? I call, at first to explain, then I’m more demanding but still patient, and then okay, I talk about the laws and then I’m called the parent OUT OF CONTROL.

Santa, I’ve spent a lot of time teaching too. Everywhere I go it seems I have teaching to do — grocery stores, banks, even people in cars looking as you are waiting for the stop light. Seems like everyone has to LOOK at our kids and judge us. So I am trying Santa.. but it gets hard. The new item in the state is Wraparound. What they don’t tell you is…well, can you imagine not believing in strength based families? Why is it such a hard concept? And you know my tough child–the one that hears voices–who doesn’t know what to do and sometimes wonders why he should continue to try? This Wraparound thing would never work for him because he is too unique–the system calls him too complicated.

Finally.. I really want to go back to DMH and get a caseworker that believes in families, believes in clinical help. They call back, they support, and guess what .. they do not want to file 51As. I am trying to believe that the professionals in Wraparound will get it.. but how many times do you need to change teams in order to succeed?

So I hope all this counts. My list this year is a list of the things I think would help me with the system. It’s a little like a top 10 countdown (I would love to be Jay Leno, or Letterman). Will people get my sense of humor? It is different then most… I guess not really if you have a child like mine.

The items on my list are in the order of importance, so if there are too many things for you to carry, please delete as few of the items as possible, starting from the bottom of my list.

Santa, I will leave you organic oatmeal cookies and soy milk (in case you are lactose intolerant) and carrots for your reindeer (organically grown of course).

Thank you in advance. I know you receive a lot of letters so you don’t need to reply unless there is a problem with my list or you need services for another child. I have taught myself to be resourceful so please let me know if I can help someone else get it right!

10. Mobile crisis to move in my home

9. Clinicians who will talk to all parts of the team

8. Schools that do not depend on the parent to play expert, and then blame them if it doesn’t work

7. A secretary

6. A full time nurse – those somatic symptoms creep up on us

5. News station to teach the public about children’s mental health

4. Safety protection.. not what you are thinking… i want bubble wrap so when the heat is hot.. i am protected!!!

3. Another set of eyes.. reality tv please. The money would pay for the lawyers.

2. I always wanted more children, so for this one could each kid in DCF or any other system get a someone to call mom, dad, grandma or grandpa?

1. Ok.. I have decided.. nothing can be cut off my list…I need it all to make things work

December 19, 2010 Posted by | children's mental health | , , , , , , , , , , , , , , , , , | 3 Comments

Calling for mobile crisis

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. “

February 28, 2010 Posted by | Uncategorized | , , , , , | 3 Comments

Linking to effective care?

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.

February 2, 2010 Posted by | Uncategorized | , , , , , | Leave a comment

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.

January 14, 2010 Posted by | Uncategorized | , , | 2 Comments

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.

January 11, 2010 Posted by | Uncategorized | , , , | 9 Comments