Life is better because of you Rosie D!

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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6 Responses to Life is better because of you Rosie D!

  1. Lauri says:

    Well said Meri!
    Kudo’s to your TEAM and your dedication.
    Love to your whole family… miss you!

  2. Barbara Lamonde says:

    Your post was great and did cover some of the great things that came out of the Rosie D. The thing is you only touched on the (to me) biggest problem and that is there is still a time limit. I have been through the CSA program several times now, why, because once we have received services for over a year they insist it is time to graduate and transition out. All this has done is put my child back into crisis and we have had to start over several times. Then they wonder why it takes so long for her to open up because she knows they are just going to leave when her time is up, so she doesn’t trust them. The other problem is that with so many trips through the system she knows the language and what she has to say to get them to leave and how to get around hospitalization, which we all don’t want but sometimes she needs for her safety and ours. So I guess what I am saying is that it is progress but still has a long way to go. I also have not had the experience that you did with someone helping my voice to be heard, we live with her and see everything and sometimes no one will listen until it has become so sever that they can’t ignore it. Sorry this isn’t a more positive post because I will say that they have done some great things for us as well, but right now we are in the process of them telling my it is time to transition again right as my daughter is on the brink of a real crisis again. Things are escalating but we are running out of time.

  3. Marcy says:

    Rosie D has been a godsend and I too am thankful for the overhaul of the system – but it didn’t go far enough. For those of us with children who are commercially insured there is no such great system of care. There is no intensive case management (that is my job as the mom); there is no family partner; there is no peer mentor. There is no support for navigating that tortuous system that seems to be developed to keep people out rather than provide them with the services they need. Access to appropriate behavioral health services should be universal for ALL children and young adults, not based on what insurance you have.

  4. Leslie says:

    Our family has utilized wraparound services and it has been very helpful. Looking forward to progress on the Affordable Care Act. Marcy, the last blogger, can apply for coverage for her child with Mass Health and get wraparound services. We took our child off the family plan at Harvard Pilgrim and pay Mass Health that portion that had been paid to Harvard Pilgrim and now we get more comprehensive mental health care along with the usual medical coverage. Our child is self subscribed with MassHeath coverage.

  5. Dede Ketover The Board Whisperer says:

    Thank you Lisa for sharing Meri’s blog.
    And, thank you Meri for sharing your message and your experience.
    No truer words — “Listen to families and children and fight stigma!”

  6. Sharon says:

    Meri I am so happy your family has been able to receive this level of care and I agree we all owe a debt of gratitude to ‘Rosie D’. I wish I could share in your joy over the services. Our experience has been quite different and we continue to struggle. Perhaps ‘our problem’ is that our child is not explosive, is (mostly) not a danger to others and is a sweet quiet kid. ‘You gotta watch out for the quiet ones’, right? Well, that is a common saying anyway but unfortunately for us our children all present so well that they are routinely passed over. This last one, he is a daily challenge for us but he is so difficult to categorize that we are left on our own. He has been hospitalized for severe depression, he has a therapist and a psychiatrist and has been on a variety of anti-depressants. He has had a therapeutic mentor an ICC and an IHT, none of them had an impact, we have gotten no relief. Often we get extra tasks, or busy work, but no relief. Bottom line is he has reactive attachment disorder, is 16 and, we all know the story, ‘he does ok at school, just not at home’. That leaves us at home in a bad way.
    I was told the other day by one of our former workers that ‘if you (me) would just change your attitude’. FrickinFrackin.