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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.

Acute mental health care for kids: a mirage in Massachusetts?

TiredIt’s that time of year again.  Oh wait, it’s actually several months too early.  The “seasonal crisis” around psychiatric beds for children and teens has shown up far earlier this year and with a vengeance.  According to the calendar, there should be at least a few beds available for the children and teens that need them.  A logjam like this is supposed to take place in the spring.

At my office, the phone and emails are nonstop.  Often, they spill over to the weekend.  A few days ago, we heard from a mom whose 14 year old son had swallowed a bottle of Tylenol. This was his third suicide attempt.  She rushed him to the emergency room and got medical treatment right away.  But once that was completed, he needed inpatient mental health care.  “You have to wait, his mother was told twice a day.  “There are no beds.”  She’s a smart and proactive parent and was trying every avenue to budge a system that told her there was nowhere to admit her son for treatment.   When she called us he’d been waiting for four days and counting.

We are not the only state grappling with this issue.  Last summer, the Sacramento Bee reported that hospitalizations for California children and teens had spiked 38% between 2007 and 2012.  Nationally, hospitalizations have also increased but at a slower pace than California.  Connecticut also reports an increase in children and teens coming to emergency rooms in psychiatric crisis.  Data from the state’s behavioral health partnership shows that the number of children and teens stuck in emergency rooms rose by 20 percent from 2012 to 2013.

When a child is put in either a medical (not psychiatric) bed or waits in the emergency room, it is referred to as “medical boarding” or just “boarding.” We are hearing a new term this year:  boarding at home.  Parents are told their child needs a hospital or other acute care bed (which means they are a danger to themselves or someone else) and then told the child will be “boarded at home.”  Unsurprisingly, parents worry both about that child and any brothers or sisters.  This happened to Kelly, a mother of an 11 year old boy,  Her son was aggressive, diagnosed with a mood disorder and had been hospitalized before.  She would have to find someone to care for her five other children if he waited days in the ER.  She agreed to “board” him at home and her worst fears were realized when he attacked his younger sister.  Charges of neglect were filed against her for failing to protect her daughter and she is angry and frustrated.  “I did everything that was recommended, she said.  “And now this.”

Spending days in an emergency room can make some young people’s problems worse.  They see other kids leave and wonder why they are still stuck there.  Some have parents who stay the whole time, while others don’t. Often the behavioral health rooms are stark and isolated, not intended for long stays.

Hannah, the mother of a 16 year old called us after she and her son had waited for a bed for seven days.  His diagnosis was complicated and he was a large teen (over 6 feet tall) so several hospitals had turned him down.  His behavior had escalated at school, with lots of yelling and becoming agitated.  She feared he would be arrested and stayed up all night watching over him before she brought him to be evaluated.  She was told that if she left him alone in the ER she would be charged with abandonment, so she stayed and worried about her terminally ill mother-in-law and how long her employer would be patient.

Hannah’s son was finally sent to a hospital out of state.  Sometimes, that is the only option for children with complicated diagnoses.  But families can’t always make that work, particularly if they don’t own a car, work two jobs or don’t speak English.

There is no true planning going on to fix inpatient care for kids in Massachusetts.  We have meetings, we talk, we share our war stories.  There are worries that more beds will close because the rates don’t cover costs.  There are reports that the kids who are admitted are more acute than they were five years ago and inpatient care might need to be redesigned to address that.  Some speculate that because we have put strong community based services in place we are seeing the unintended consequence of families and clinicians managing children in their homes and communities until the last possible second.  This means children have very acute needs when they come to the emergency room.

Whatever the reasons, the impact on families is enormous.  They often weigh two terrible options.  If they wait for days with their child, their other children suffer or they put their job at risk.  If they bring their child home, they might not be able to manage things and someone could be hurt.  Stephanie, a single mother of three, stayed in the ER by her son’s side last month for four days.  She was told that she couldn’t leave him.  Her mother stayed with her eight year daughter, who missed school.  Even though she called the school to say she was stuck at the hospital, they filed against her saying her daughter was truant.

No one seems to be responsible.

At my office, we are recommending that parents call their insurers directly and ask them for help.  We tell them to call their legislator and let them know we can’t fix this alone.  So far, the best we can do is support each other and advocate like there is no tomorrow.