Hold On, It's Not Over

A Blog about Children's Mental Health in Massachusetts

Getting to “culturally comfortable”

When programs strive to be culturally competent, the result should be that families are “culturally comfortable.” Most parents and youth can tell you whether it is easy and comfortable for them to be connected to and involved with a program. Feeling culturally comfortable helps families decide how they view a program, a worker or a service.

I first encountered the term “culturally comfortable” in the guide, Working with Families of Children in the Juvenile Justice and Corrections Systems. As Trina Osher and Barbara Huff note, some families may require a boost to become involved with their child’s services or program. They list some key strategies to provide that boost and providing culturally comfortable settings is a priority.

The term “culturally comfortable” has been cropping up in health and education settings for a number of years now. Many urban health centers have changed how they practice, finding new ways to share health information and deliver care. Some ask patients how they think a condition should be treated before offering their own recommendations. One pediatric practice in Virginia explored creating a “culturally comfortble” medical home. Some preschool educators have also been strong proponents of ensuring that their classrooms are culturally comfortable. Beverly Gulley and Nillofur Zobairi write that educators need to “know and understand the family’s cultural orientation to make a child feel comfortable and secure, and provide a sense of continuity.”

While cultural competence is a core value for both wraparound and creating a systems of care in children’s mental health, the notion of “culturally comfortable” settings or practice has yet to show up. I think it’s about time. Cultural competence is a rich, complex yet formal standard and most parents and youth would be hard pressed to say how close a setting or practice is to getting there. Yet they would be able to judge whether it was culturally comfortable. Feeling comfortable or uncomfortable is something we are all familiar with. Culturally comfortable settings, dialogues and practice make families feel welcome and respected.

Increasing cultural competence in the delivery of mental health services for children can help reduce disparities and increase access. But these results are frequently unknown to families, especially if the changes are gradual. Changing a setting, practice or dialogue so that it becomes more “culturally comfortable” is something that families can notice and determine for themselves. Determining whether that change is happening can empower parents and youth. Early in the family movement, parents often judged whether materials, programs or approaches were family friendly and later family dirven. So, too, can parents and youth figure out if materials or programs today are culturally comfortable.

Building an approach that is “culturally comfortable” starts with communication and awareness. Find out what the family values, who its members are, what the concerns and goals for its children may be. Ask families what matters to them. Find out what is private in a family and what is easily shared. Culture influences parenting and family behaviors, including meals, sleep, how to dress, interaction with both adults and other children, health care, how to show affection and respect, ways of celebrating and what occasions to celebrate. Many different family configurations are out there. Celebrate moms, dads, grandparents, extended family members, siblings, and others important to children. Model respect and show that customs, languages, cultures, and physical attributes different from your own are important and to be honored. Diversity in our society should be valued and enjoyed, not considered a threat to the values or lifestyle of any group.

Catherine Stakeman, Maine NASW, said that “becoming culturally comfortable between all cultures is a journey, and there is always room for improvement.” To make it happen, it must be everyone’s responsibility.

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January 16, 2011 Posted by | children's mental health | , , , , , , , , , , , , , , , , , | 3 Comments

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?

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

Parents, children and psych meds

According to PAL’s most recent report, parents rated psychotropic medications the most effective treatment available to their children. A number of people have been pretty surprised. “Really?” they asked. “Why would parents say that?” Treating children with psych meds for attention, mood, behavior or other mental health conditions generates lots of strong opinions, rhetoric and even judgement. Much of it is negative; it seems no one really expects parents to say anything positive.

But parenting is a practical endeavor. Parents want their children to be successful in school, be able to manage their emotions, have rewarding relationships with their peers and family and most of all, be pain free. Parents look for things that work and help their child do better whether it’s structure, a strict diet or medication. We try out different options but end up making choices based on results. Studies show that stimulants work for 70 to 80 percent of patients who need them and anti-depressants for 60 to 80 percent.

In an interview about her book We’ve Got Issues, Judith Warner says that we’ve been talking for the last 10 years or so as if children are routinely being over-diagnosed and overmedicated and lazy, competitive parents are basically acquiescing and pathologizing and drugging their kids in order to give them a competitive edge or in order to save themselves the time and trouble of real parenting. She goes on to say that this is not only false, but also really hurtful. It can actually keep kids who need mental health care from getting it when parents internalize these messages and worry about fitting those stereotypes. They can question themselves and their own instincts about whether something is going wrong with their kids. And this doesn’t benefit anyone.

There are often high expectation for our children. Schools often hold students up to rigorous attendance standards whether or not they have mental health needs. If a child is depressed, fearful or has just returned from a hospitalization, he or she is still expected to show up at school. They are also expected to focus, and behave well. These results are expected by schools, and everyone else, to occur in a very short amount of time. Long gone are the days when children had time to stay home and recover from an episode of depression.

Most parents want their children to stay home and receive care in their own community. We want our children to be part of their family and be able to have a healthy relationship with their siblings. Sometimes medication, hopefully in tandem with other treatment, is what makes this possible. And sometimes, it’s all we have.

December 3, 2010 Posted by | children's mental health | , , , , , , , | 2 Comments

Family engagement is a two way street

Change can be hard. On the other hand, if we don’t change, we don’t grow. What I observe growing here in Massachusetts, sometimes slowly and other times in leaps and bounds, is an understanding that partnering with parents is pivotal to the success of children and youth with mental health needs.

Seems like a no-brainer, right? Children live in families and their families know them better than anyone else. They invest in them emotionally, financially and give them truckloads of time and energy. They worry about them, cheer their successes and feel their failures. In the words of Jane D. Hull, “At the end of the day, the most overwhelming key to a child’s success is the positive involvement of parents.”

While involvement is a start, it anchors the beginning of a continuum. At one end is family involvement which builds to family engagement which in turn leads to a full partnership with families. The kind of relationship where you share information, communicate regularly, hold each other accountable and respect each other’s expertise. If all we aspire to is involvement, then a school, a program or a clinician can ask a parent in for a meeting and check off the box labeled “involvement.” After all, that parent showed up, listened and maybe signed off on some forms. The criteria for involvement has been met.

Family involvement is often unilateral. A program might develop family-program activities without parent input in order to help the program achieve its own goals. A school summons parents to hear their information, not to contribute their own information. A clinical team has recommendations for parents on how to improve family involvement. In each of these instances, the program assumes they are the experts about the child and the parents are the learners. There is a single approach for all families.

Family engagement, on the other hand, is a two-way street. A program works together with families to develop activities that promote goals that they share. They always seek family input when developing plans to increase family involvement. A school listens to and includes the input of families. A clinical team believes that each person, including the parent and youth, has expertise and information to share. All of them assume that parents care about their child’s progress and well being when planning interventions and treatments. They respect the differences of each family and understand that one strategy is unlikely to work for everyone.

Family engagement and its impact on the success of children and youth with mental health needs is also being studied and reported on. In Occupational Therapy in Mental Health, Claudia Fette and Rebecca Estes define family engagement this way: “Family engagement is an active and ongoing process that facilitates opportunities for all family members to meaningfully participate and contribute in all decision making for their children, and in meaningful involvement with specific programs and with each other.” Note that the definition uses the term “ongoing process” and includes the involvement of families not only with their child’s program, but with other families as well.

The bar is set higher to get to family engagement. It means more work than giving parents information and having them sign forms. But the odds for successful outcomes for children and youth go way up too. Change is hard, but it is rewarding. As we are moving in that direction, always remember that the future comes one day at a time.

July 7, 2010 Posted by | children's mental health | , , , , , , | 4 Comments

Mental health parity and kids — has it helped?

Ten years ago last month, Massachusetts enacted a mental health parity law. As with most legislation, there were a lot of compromises along the way and no one was really sure if this law would make a significant difference. (It was an important moral victory, though.) The list of diagnoses was limited to those that were considered to be“biologically based” (bipolar made it in, post traumatic stress disorder was out) and insurers could impose limits on anything that wasn’t “medically necessary.” PAL was the only organization talking exclusively about what children and families needed and worked hard to get the insurance benefit to pay for therapy in other places than an office. We had high hopes for what the passage of parity would do for children with mental health needs and their families and a lot of hopeful guesses.

Ten years is certainly enough time to tell if any law has made a difference. What parity is supposed to do is simply ensure that your insurance covers your mental health treatment just as it does your medical treatment: same deductible, same authorizations, same copayments. Our parity law of 2000 was limited in scope — many called it partial parity. Does that mean it only partly helped?

Here are five ways that the mental health parity law — with all its flaws — has helped children and youth with mental health needs and their families. Sometimes it has made a direct impact and other times its influence has been more subtle.

First, parity increased outpatient visits so that children have as many visits as they need in a calendar year (here’s where that medical necessity standard comes in: it’s frequently the insurer who decides what they “need”). Before this, children often had only 8 visits (or 12 or 20) a year, no matter what. Many families reported running out of their therapy visits in the summer, often right before school was going to begin. For many, the individual therapy and family therapy visits came out of the same pool so that if you had family therapy, your precious number of individual visits was decreased.

Second, by including children in the language of parity we agreed many kids actually didn’t have perfect childhoods and their mental health needs often look quite different from those of adults. The language in the law for children and teens has standards around functioning, not diagnosis, even though it isn’t always used.

Third, we laid the groundwork for paying for mental health services for kids in different settings. The law said you could receive therapy at home, at school or in other settings. Why is this important? Children and youth often resist going to an office or institution and parents can have a heck of a time getting them there. Many also will speak more freely in a familiar comfortable setting.

Fourth, this law actually did help reduce stigma. When Nancy Collier and I first worked on this law, we had to use our own personal stories to highlight the issue in the media. Now, we have many families willing to speak out and tell their stories, hoping to make things better. Hearing about real people, their struggles and successes, always makes the issue come alive. This willingness to speak out wasn’t there just ten years ago.

Last, this law affirmed to parents and their children that mental health is as important as physical health. We know our children and familes are in every city and town in the Commonwealth, from the child who shows up in the school nurses office with a stomach ache (often anxiety in disguise) to the child who experiences trauma and has witnessed violence in his home or community. Their future depends on all of us saying over and over again, children’s mental health matters to me, does it matter to you?

What do you think? Has mental health parity made a difference for you?

June 28, 2010 Posted by | children's mental health | , , , , , , , | 2 Comments

Bipolar no more?

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. 

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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!

March 29, 2010 Posted by | Uncategorized | , , , , , , , , | 4 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