Tag Archives: CBHI

Reaching Out

April 27th, 2015

rowofkidsReaching out and helping youth and young adults is very important. To give us attention shows us that you really care. Reaching out and helping is one of the best things that anybody can do. Look at all the trouble that happens to youth on the streets every day or that’s caused by youth and young adults.  We search for support with our actions. We speak out to you with no answer. It’s our cry for help.

I am amongst the youth and have done things in the past in an attempt for attention and support. I have set fires and even fought at school. I’ve been to different programs in three different systems. I stuck with a few programs for a while but eventually ran or decided they were not for me. One program has been helping me for five years now. I think they will always be there for me.

I have been going to PPAL and Youth MOVE for five years. It is a wonderful placed to go that reaches out to you. They talk to you, ask you how you’re doing, and offer you help whenever they can. PPAL has helped me a lot. Helped with things such as getting my ID, helping me find a job, and given me people I can talk to.  PPAL has groups every week for youth and young adults. It’s a good place to talk because it’s not run by doctors or people sitting in the corner with a clipboard, it is just youth talking to each other. We have dinner together. I can also hang out with other youth and young adults that are around my age group and listen to their experiences. I can get feedback about how I can deal with some of my experiences in the past or even problems I have now.

Before coming to PPAL I was really scared to talk about anything and when I opened my gates and started talking, I felt so much better. I began coming constantly and kept getting support emotionally and now I help as well. I help set up the groups and run parts of the meetings. Sometimes I stay away for a while and am worried about going back. I worry about how I might be judged. PPAL doesn’t judge me for why I was away. They welcome me back and help me get back on track. They offer to help.

I am a troubled youth just like a lot of youth. Many of us feel alone and like we have it the worst, but you are not alone. Talk to somebody. Open up. You might find somebody who is reaching out to you. I can personally say that a lot of people at PPAL know what they are talking about. We don’t fake it. We know how you feel. We will help.

 

This blog was written by a 19-year-old young adult member of Youth MOVE Massachusetts. They have lived experience in mental health, child welfare, and juvenile justice systems. Their strengths include leadership skills and writing poetry to name just two.

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Life is better because of you Rosie D!

November 21st, 2014

kidswaitI continue to be amazed how after six years the language of mental health systems has changed in Massachusetts. All because of one little girl named Rosie D and a group of lawyers who felt the eleven plaintiffs had a case; even though Rosie D would age out prior to the “settlement” being started.

Every day something new happens in the wraparound world for advocates in the state, families that receive support and the many providers and workforce that have occurred as a result of the case. One thing I continue to think of when I talk to families or reflect on days that my own families received the array of services in the state, I continue to think of Rosie D.

Rosie, you are due for a thank you.  Please allow me to thank you for the many things you gave my family the opportunity to receive. Also let me tell you there are many people doing amazing work and many that need to do better. But first let’s look at what worked well for my family:

We were able to receive intensive services in the community for my middle child. This would be the opening that allowed for issues to be addressed. It would also impact my family in ways that today I can see the good and the amazing alongside the challenges.  My family was able to grow and to work on things in the home, the community, with family members, natural supports and support skill building because tragedy and emotional health were so high! I would be able to have people come to my house instead of being the parade in the community to get support for my kid. There would be one Intensive Clinician that would stay and work it out because of a teenager that was stuck. My son would have a therapeutic mentor ™ that would be his voice alongside him.  We would have community crisis teams visit our family and assess if a hospital level of care was needed. (MCI teams). We would also be the ones that would have In Home Behavioral therapy (IHBT). To our family, the behavioral therapy was the biggest help. I received coaching, easy tools to make things better, and it allowed me to explain to others that what I was seeing was real.  So Rosie D and all your connections:  Thank YOU!

Thank you for allowing my children to have a community service instead of the locked doors, cold walls and rejection-like feeling that they were the problem. Psychiatric care is so hard to understand; it’s nothing like medical care.

As a parent that walks a path that not many people understand, it was crucial for me to have a family partner.  She was able to prepare information with me and present my thoughts and vision.  She proceeded to organize and help me process what I’d just gone through. This is one of the best supports you could ever offer a parent.  Wraparound reminds me of the warm blanket you are given as a child to make you feel better, or the friends and network that believe in you! Rosie D- thank you!!

The approach, practice and process of wraparound is there- what is not there is giving families the menu and understanding of what can be given to them.  It is a challenge to understand, but it is also the challenge that when a family is not aware of other services they do not know where to go. For that, it is hard.  If we can get full speed on the Children’s Behavioral Health Intiative that is really all about you Ms. Rosie, our children, families and community would be in a much better place. We need to work on one big thing.  It is the hardest piece.

Listen to families and children and fight stigma! And admit when something doesn’t work and create something better because each child and family is worth it! Do not graduate if you’re not ready – keep trying!

Lastly, let’s make the medical world join the behavioral world.  The Affordable Care Act is around the corner. Medical homes and health homes are here! We are at the beginning of Mental Health Parity – finally, everyone hears that mental health and behavioral health are real. We as parents aren’t making it up. Let’s make it real.  Everyone knows pink is for breast cancer awareness and talks about it. Wear green.  When you do, and someone says, that it’s beautiful, say out loud and strong, “It’s for mental health awareness:  bipolar, schizophrenia, impulsivity, obsessive-compulsive, post-traumatic stress disorder, Asperger’s, mood disorders. They are real!” Don’t be ashamed- we are in this together.

 

Meri Viano is our guest blogger.  She is the parent of two sons and a daughter who continue to inspire her blog posts.

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Remembering Yolanda

May 11th, 2012

For countless reasons, May has been and still is my favorite month of the year. It’s filled with dance recitals, school plays, field trips, field days, lilacs, graduations, May day walks and Maypoles. With longer, warmer days we also enjoy baseball games, ice cream trucks, bikes, pogo sticks, swingsets,  hopscotch and marching in or watching memorial day parades.  They are all great things that speak of May to me.

School is coming to an end and then there are the “firsts” of the year. First communions, first trips to the beach, first swim, picnic and cookout.  They all happen in May and remind me of new beginnings, happiness, pleasures and the hope that there is so much more to come.

My May memories are filled with commencements, summer jobs, weddings, vacations and my youngest daughter’s birthday on May 12. Often it would fall on the same day as Mother’s Day. This youngest of my three girls, from her first recognized day, celebrated in a very BIG way. There was her third birthday when everyone gave her the LARGE bag of Lays potato chips because it was the only thing she asked for, and made her the “happiest girl in the world.” Then there was the third grade birthday party where, despite the fact that we wrote out invitations for her entire class, she extended verbal invitations to the entire school (kindergarten to fifth grade) and many of these invitees showed up as well. I also remember her sweet sixteen pool party where all the boys brought her roses.  There were so many that the last boys to arrive gave them to me!  My May baby added to my list of all the reasons I love this month.

As the years went on, our family also celebrated Children’s Mental Health Month in many different ways. We did NAMI Walks together, attended legislative breakfasts, went on advocacy trips to the State House. 

My May baby, along with her two sisters, sometimes suffered from mental health demons.  However, she always had a special empathy for others with struggles like her own.  As I worked as a family supporter, even before her diagnosis, she would often ask me to speak to a schoolmate’s parent because, as she said, “They don’t know how to do it.”  The “it” usually meant to advocate at the school level.

This May we will celebrate our daughter’s 21st birthday.  It seems impossible but she will not be here to celebrate with us.  My baby, the child of so many talents and strengths, with physical and spiritual beauty and emotional challenges that sometimes tore at my heart (and other times frustrated me more than I imagined any child could) took her life four years ago.  It was just months before her 17th birthday.

I wanted to write this blog for several reasons.  The first and most primary is to honor Yolanda.  As her parents, we think about her, laugh at fond remembrances and painfully miss her every day.  I don’t think that will ever change.  But we have faced the unimaginable and learned much.  I know my daughter would want me to speak to others in her name.

In many ways, we have come so far in the past 20 years in children’s mental health.  Early diagnosis, treatment, appropriate interventions and a growing recognition by schools of mental health challenges have all improved.  Yet, not all children and families benefit from these improvements and many children are still “pushed through” from  grade to grade.  While some people are leading the charge in their part of the system, there are still children and families who do not get what they need and are not treated with understanding and respect. Through the CBHI initiative, the state has put in place pioneering efforts to try to rectify some of these problems.  In many cases, some things are improved and children and families are doing better.  But, despite all these efforts, other kids are “still stuck.”

We have come so far, yet there is still so much more to do!  I ask you today, for all of us and our children, to continue to challenge the barriers and work to take them down.  In whatever way you can, be aware of how much impact your voice and presence make.  A little righteous indignation can go a long way and can bring about improvement and change. It may well be the most exhausting work you will do or have ever done.  It is not often applauded.  We don’t get the big bucks, accolades or the recognition of a job well done.

We are fueled by passion and hope that tomorrow can be better for our own children and the others that follow.  With HOPE that they can attend school in an environment where they feel safe and happy.  With HOPE that they can have friends, enjoy play and be respected.  With HOPE that they can do the best they are able to do and get the help they need to do it.  And with HOPE that not one more child has a week, a day or a minute where they cannot imagine living another moment.

I HOPE for many merry, merry months of May for us all.

Mary Ann Tufts is our guest blogger.  She is a fierce advocate, a wonderful mother and a strong voice for children’s mental health.  The Children’s Mental Health Law was named after her daughter Yolanda.

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Thumbs up, Governor

October 21st, 2011

Dear Governor Patrick,

Let me say right up front that this is a letter of thanks.  Something remarkable is going on in children’s mental health here in Massachusetts.  We’ve been pretty quiet about it and I’m not sure why.  I think we should be shouting it from the rooftops every chance we get, don’t you? 

As you know, a girl named Rosie D and her family got together with others like them and sued the Commonwealth of Massachusetts a few years ago.  Her family believed that children should receive mental health treatment in their communities whenever possible instead of going to residential programs or hospitals.  The state had a few small programs to fit the bill, but not enough to even start to go around. 

The federal judge wrote in his decision that Massachusetts needed to change how it delivered mental health services to children and youth receiving Masshealth a year before you became governor.  But when those families went to court, they wanted a remedy, not money or damages.  What landed in your lap was the task of creating that remedy and having it meet the needs of all those children, youth and families that were counting on it. 

There are lots of children and youth here that need these services in order to have the kind of life their parents want for them and that they deserve. Epidemiologists tell us that 1 in 5 children experiences a mental health disorder during the course of a year. That comes out to 286,600 children in the Commonwealth.  For most of them, there is a delay before they receive treatment, often a delay of years. 

Since that judge issued his order, the people on your staff have created something amazing and unprecedented.  They designed the Children’s Behavioral Health Initiative and they said they were going to change how things work for children and teens like Rosie D. They made sure the services were in the community.  They created a model where families were part of the team figuring out what care was needed.  They designed a new way to respond to mental health crises (and we all know that children have their crises at inconvenient times) so that the team came to the family instead of the parent and child trekking to the emergency room.  And it’s up and running all across the state.

As with all new initiatives with this kind of scope, there are still things to work out.  Sometimes the services don’t work the way they should.  Sometimes children don’t get what they need right away.  Sometimes we just need to tweak things and sometimes significant advocacy is called for.

My father, a New Englander to the core, used to say that you can’t learn to ice skate without falling down.  While no one wants to see mistakes, we can learn from them.  Parents want their experiences, good or bad, to make it better for the next family behind them.  Parents want to and will be the Amazon.com reviewers and consumer reporters of the services that their children receive.  I wish there were a way to make sure their experiences were collected and used to improve the design, the practice and the kinds of outcomes we focus on.  Their input is incredibly valuable.  Can we think about that?

You probably know all this, but what you don’t know is how the rest of the country — or at least those who pay attention to the children’s mental health world — finds this both jaw dropping and exciting.  It’s not just what’s been done here, its the scope of it. When I go to an event with people from other states, they come over and want to hear the details.  They want to know how families see things, how this new initiative has changed our system of care for children in Massachusetts and they are hungry for both data and advice.

People in other state governments want to hear about our successes, our roadblocks and how we continue to improve things.  Researchers want to hear about our data and outcomes.  Policy makers are interested in how this has impacted other children’s services, funded both by the state and by private insurers.  Families want to know how they can help build something similar in their own states. 

We all need good news in these tough economic times.  You’ve done something remarkable here despite those tough times.  Let’s get the word out.  In the meantime, thumbs up.

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My Top Stories On Children’s Mental Health In 2010 — What Are Yours?

January 1st, 2011

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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