Tag Archives: Rosie D

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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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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Dear Santa

December 19th, 2010

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

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Linking to effective care?

February 2nd, 2010

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.

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