Without advocacy we cannot change a damn thing

November 20th, 2016

lily-tomlin-quoteWithout advocacy we cannot change a thing.  Heaven knows there’s a lot that needs fixing, changing and bettering in our world today.  Sometimes the changes are small and just need a little push.  But many times, a small push won’t cut it.  Big changes require big advocacy and advocacy requires boldness and bravery.

When I first started advocating for my son, I believed that the school and mental health systems were built to provide services for kids like him and that those services would be delivered quickly and match his needs.  I paid – still do – a hefty sum each month for insurance (surely that would open doors?) and I knew I could make my case.  I figured I could rely on the goodwill of the people who were concerned about him.  I absolutely knew in my heart that these were the necessary ingredients for success.

I know you’ll be just as surprised as I was to find out that’s not how it works.

I lived in Southern California when my kids were young. When my son was seven he was in a regular second grade classroom.  He had already missed the second half of first grade because of phobias, depression and suicidal behavior.  He had had one pretty lengthy inpatient stay.  The school suggested that the school psychologist, Maryellen, evaluate him.

When Maryellen and I met, I felt nervous but sure that we would see eye to eye.  She ran through the test results and agreed with his diagnoses.  She added that he was very, very smart – his IQ was in the near genius range.  She looked me in the eye and said, “High IQs tend to run in families.  His father must be very smart.”  I felt sucker punched and barely heard her say that she felt his high IQ more than compensated for his mental health challenges and therefore he didn’t need any help.  Later I realized I had experienced disrespect as a tactic to change the meeting outcome.  On that day an advocate was born.

Moments like these change things.  You realize the world doesn’t work the way you thought, people don’t act the way you imagined and instead of a straight path from point A to point B, it’s more like a hiking trail over rocky stretches, across streams, in rain, sleet and snow.  It can scare even the most intrepid hiker, but here you are taking the first step.   You learn not just to advocate, but to become an advocate.

It’s unlikely that you’ll get what your child and family need in the mental health world without advocacy.  People don’t rush to suggest services and insurance companies don’t agree matter-of-factly that you should get that treatment you identified.  You find out you have to make it happen.  You may become an advocate eagerly or reluctantly, by immersing yourself in knowledge or fighting every step of the way, but you change yourself.  You change your expectations, you change your definition of success and most of all, you change who you are.  As one mother said to me, “You become the parent your child needs, not the one you thought you’d be.”

Advocacy can be uncomfortable.  For those of us who didn’t raise our hands for the teacher to call on (because then everyone would look at you) or make waves or dig in their heels as a matter of course, it doesn’t feel natural at first.  Advocacy is something done publicly.  It is played out in a setting that is very different from many other things we do.  You do it in front of an audience, sometimes big, sometimes small.  While some nod their heads along with the points you make, others assume a “show me” stance.   When you get them to nod their heads too, even a little, you feel pretty fine.

You learn that advocacy does not have to be adversarial.  It is sometimes, but many times it’s not.  Lots of times it’s about being articulate, passionate, persistent and even patient.  It’s also about being prepared and being stubborn.  It’s about looking for options and sometimes creating them.

Without advocacy, people assume we are okay with the status quo.  Without advocacy they don’t hear us or overlook our perspective.  Without advocacy, we cannot make a difference for our family and for other families.

For many families, figuring out how to go about advocating is like playing a Jeopardy game.  You know the answer you want and you try to figure out the right questions to get there.  Advocacy is a skill, or set of skills, just like playing Jeopardy.  If you hone those skills, you might get the jackpot instead of the smaller prizes.  But even if you are a terrific player, there are still heartbreaking consequences if you make a misstep.  You have to trust in your skills when you cannot trust in anything else.  Unlike Jeopardy, there are days when you do everything right and you simply don’t win.

Advocacy is also about picking yourself up and going to the next meeting, the next discussion and bringing your A game one more time.

When I first began talking to other parents about my son and how we worked to get the services and treatment he needed, some would say, “I didn’t know you could say that” and a light bulb would go on.  Others would share their own stories.  Some would ask me to help.  When I did, I learned that if you help one family, you only help one family.  The barriers remain and the rocky stretches, treacherous streams and bad weather are there for the next person.

Individual advocacy for my family and other families was important, even crucial. But nothing changed for the families coming along after us – they were likely to hit the same snags and experience the same hazards.  Systems advocacy – working to change policies, laws or practice – changes things for many more families. The first time I sat at a policy table, I realized that here was the place to bring all those family stories, the skills I had learned and the hard won expertise.  Here too, you sometimes fight to have your perspective heard but when it is, it doesn’t echo anyone else in the room.  It’s why you are there.

My son watched me advocate over the years first for him, later for families like our own.  One day, he said, “I want to listen and watch.  I think I can advocate, too.”  Great, I told him.  And he has.  It’s a big undertaking to become a self advocate, with emotional fist pumping moments and moments of deep disappointment.  He understands that, too.  One day, when we were talking I told him, “Advocacy is our family business, you know.  Some families have stores or restaurants or trades where the children learn a lot about the business from an early age.  Just like you’ve learned about advocacy.”  He grinned and nodded.  “I’m okay with that,” he said.

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My dear friend: my experience with grief

October 24th, 2016

angel-and-griefI’m not a religious person. I don’t attend church, and I don’t pray before bed. Even though I am not religious, I do believe there is life beyond death. I believe there is a place where our loved ones can connect and watch us from above. If there is such a place, I know they gained an angel when my friend passed on.

One of my great friends passed away in April of 2015. The day I found out was the worst day of my life. I went on social media, and it was flooded with posts about her. She had committed suicide at the age of 17. I couldn’t believe the things I read. I cried all night long and school the next day was spent with counselors. I had never experienced the loss of a friend, and it tore me to pieces.

I attended her calling hours shortly after that. I cried with her mother, who gave me a huge hug. I cannot imagine the pain her mother was and is feeling. Losing someone is never easy, especially someone so young. Grief has stricken me ever since. I’ve spent the last year spending most of my days at home, crying because I miss her so much.

She was a remarkable person. She cared so much for others, but tended to neglect herself. Her smile was contagious and she always had something nice to say. I don’t think there was a mean bone in her body. That’s what made her such a good friend.

I’ve gone through all the “what if’s”. What if I could’ve done something? What if I had listened more? Even with those questions, I knew in the back of my head it wasn’t my fault. I didn’t do anything wrong. However in the sad moments, your mind thinks of all these sorts of things.

Grief is always a difficult thing to cope with. More than a year later I still am trying to handle these feelings. I wish I could say I have come to terms with losing her, but every time someone brings her up, or when I bring her up, I feel an emptiness in my heart. I feel like a part of me is missing.

What I have learned is, it is totally normal to grieve for a long time. I like to take comfort in my belief that somehow, my dear friend is in a better, less depressing place. She deserves that much after what she went through.

For all of you who have lost a loved one, no matter the circumstances, remember you deserve to continue on. Try to make the world a better place, and never forget your loved ones.

Rachel LaBrie is our guest blogger.  Rachel is a young adult who strives to someday become an author. She also loves spending time with her 5 four legged friends.

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Outrage fatigue? Yeah, we’ve got that.

September 29th, 2016

outraged-babuDo you have outrage fatigue?  Yeah?  I think I do, too.  I’ve noticed that it feels a lot like the disbelief and exhaustion that comes with parenting a child with mental health problems.

Each day my inbox, Facebook and Twitter feeds, social media and most of all, the 24/7 news are filled with stories that are designed to outrage.  Much of the time they truly do. We have a presidential election going on that seems more like a reality show with way more than the usual sniping going on.  We hear the over the top comments, new twists on old scandals and on top of the television pundits, our friends and family are happy to post their opinions too.

Nearly every week I see (and you probably do, too) the video feed of a new shooting and many times (though not always) the police are involved.  In some cases it’s clear that racial bias plays a part in how events unfold and in other cases it’s less clear.  There are other times where the shooter may have significant mental health problems and has not received the treatment he needed.  Sometimes people with disabilities are the ones being shot. A few weeks ago, a deaf man was shot by police in North Carolina and earlier this week a woman threatening to kill herself was shot here in Massachusetts.  We are horrified and outraged and barely have time to hear the details before the next story grabs our attention.

We are not imagining it.  One study found that  “outrage discourse” was found in 100% of cable TV episodes, 98.8% of talk radio programs, and 82.8% of blog posts. On average, examples occurred once during every 90 to 100 seconds of political programming on TV and even more often on radio. Syndicated newspaper columnists used outrage discourse much less frequently than other media analyzed, but more frequently compared to columns from 1955 and 1975.

Only a few years ago, we talked about compassion fatigue.  The mood was different.  We saw abused animals in television ads.  We heard about the victims of diseases such as Ebola.  We saw the devastation caused by natural disasters and heard how it made people homeless and hungry and we were asked to take action and give.  Lots of us did.  For parents, the stories of children losing their homes and their families were particularly tough. Those heartrending stories came into our homes and social media often and while we felt sad, many of us also felt overwhelmed.

Then something shifted.  I can’t quite put my finger on when that happened but today we are told to be outraged (and much of the time we probably should be), not saddened.  We hear about the latest event, share the pictures, the stories and the comments.  We even add our own to the mix.  But the outrages come fast and furious and we barely have time to exclaim, post that emoji and comment before the next outrage appears.

Any parent of a child with mental health needs can tell you what is going to happen next.  We are going to get exhausted and overwhelmed.  We are on a constant cycle of reacting, figuring things out, moving on and starting over again. Voila!  Outrage fatigue.

When you parent a child who has multiple meltdowns and whose moods and behaviors are like a roller coaster, you shift your idea of what to react to.  You accommodate the slightly awful and save your energy for the truly terrible.  When you bang your already aching head against the wall of failed approaches, balky systems and waits that defy imagination, you learn to ignore the slightly shocking and save your determination for the jaw-dropping, I-can’t-believe-this-is happening events.

Social media, live streaming and 24/7 news lets us stay connected in ways that were not possible before now.  The good news is they can also be empowering, informing and entertaining.  But when what you hear is the same awful news or outrageous remark over and over, it loses its punch and ability to galvanize you into action.   We can’t maintain a state of intense moral outrage indefinitely.  What’s worse is that our barometer, or outrage-meter, begins to malfunction and it doesn’t register the only-somewhat-awful.  Just like ignoring that risky, over-the-top or unsafe behavior you’ve adjusted to managing at home.

Outrage should be a good thing and spur us into action.  Stories about climate change, the election, police shootings and terrorist attacks are intended to inform us but also motivate us to take action.  Sure we can give or donate, but the message encourages us to make a difference and act.  It might be to vote, sign a petition, join a protest or volunteer.  Outrage springs from a sense of basic decency and moral rightness and we know when that has been violated.  Like many uncomfortable emotions, it’s actually healthy.  We are engaged, fired up and we want to make a difference.

Children’s mental health advocacy relies on outrage.  There are children and teens waiting in emergency departments for elusive hospital beds.  One of the children who was waiting only a week or so ago was five.  We should all be outraged at that.  Waits for outpatient care can be weeks or even months and at the first appointment parents discover the clinicians are frequently new to the work.  Parenting a child with mental health needs is more like quilting, piecing together services paid for by insurers, schools, state agencies and often, out of pocket.  We have a system to try the patience of a saint, as if the child you are trying to help didn’t already stretch that patience thin.

But when we hear of 5, 10 or more outrageous things a day, it’s hard for the less outrageous to get traction.  People think they’ve already heard about stuck kids, waiting kids, struggling kids.  The quiet outrage families feel gets lost and doesn’t burn bright in others, the ones we hope will be the champions we need.

Outrage fatigue hurts us in several ways.  We begin to think outrageous events are epidemic.  They are everywhere and spreading rapidly.  We learn to look for the new ones and pay less attention to the ones we already know.  We can feel overwhelmed and tired and want to find a quiet space rather than jump in the fray to change things.  Different events and tragedies compete with one another and we try to prioritize them even though we are comparing apples, asparagus and armadillos.

While I admit to a self diagnosis of outrage fatigue, I am not saying that we should abandon telling each other about kids waiting for services or the harm stigma can do or the immense burden that families still haul around as they identify, coordinate and  (finally) access care for their children.  We need those stories.  We should feel appalled and want to change things.  That’s good because this is something we can fix in big and small ways.  Unlike a lot of other things in my inbox.

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What’s the elephant in the room?

September 11th, 2016

elephant2I remember being a child and planning what my life would be like. I was a natural caretaker and it was comforting for me to take care of people. From a early age I spent time with my grandparents and first they took care of me while later I took care of them.  It was a family dynamic built on love and kindness. As I grew up I supported my siblings in many ways – sometimes more than they liked. My brothers would challenge me. They were sometimes my best friends and sometimes my worst enemies.  I continued to see my cousins who lived next store and were neighbors. We had our own little gang in a small town outside of Worcester.  We were in many ways innocent but challenging too. Today it would be called bullying but for us it was protection, a voice and connection to make sure that we watched each other’s backs.

I remember the days when we would make sure that people on the bus wouldn’t tease any of us in our little group.   We actually made a bus driver upset once and cry as we stood up after one of us was called a jerk. Today, that would be suspension and if anything maybe even being kicked off the bus.  Back then our parents were called, we apologized, learned a lesson.  We taught the bus driver a lesson too — that none of us would allow for someone to be mean to one of our own.   We were  close in age and I remember staying back a grade and being taunted about it over and over again by this boy. My cousin, who was just 6 months older, gave out a punch to create a black eye and bloody lip to the kid who teased me on the playground. He was certainly talked to.  But yet again the other kids knew that we were a group and to be careful if you were not nice or fair to any one of us.

As I grew older and had children. the laws, language and the responses changed. My children, just like in my old neighborhood, had their “group”  and you couldn’t call it a gang as that is not socially appropriate. They would stick up for each other but the things that they did related to a challenge. It was hard.  One time my son was scared and took a letter opener from a teacher’s desk.  He was instantly suspended and no discussion. The principal had left him alone in the room and he was having hallucinations that someone was going to hurt him. He didn’t talk to anyone  but just took the opener.  Of course I explained to him  the meaning of “safe” and “unsafe” behavior.  (This was another set of terms I really do not remember being taught so strongly.  Back then, it was right or wrong with no in between).  For my son, I would have to advocate and discuss with the school why they should allow him to come to school again.

There were other incidents as I raised my children and I would look at my childhood memories and compare.  It was like us years ago being the bully and victim in the same day but now the school had a very different response.  Because my child that wasn’t falling on the developmental chart, he wasn’t labeled as being “Delayed”  instead I was told he was “healthy” except he  would struggle over and over again.  He would be teased with no one to stick up for him, he would do something back and get blamed.  It was an up and down battle as I would ask for the skills to be taught – one of mediation, and advocacy for a friend that would allow growth, responsibility and honesty.  But the difference was that I wanted there to be an opportunity of learning, generalizing and most of all being supported as he learned.

Teachers would be trained on how to recognize and deal with bullying year after year. But I often wondered, Did they also get education or professional development on mental health, trauma, or loss/grief in children?  It is hard to ask for help from a teacher that has no training.  Even after the tragedy in Newton, CT – that was going to be the conversation we had.  Here we are still with the same professional development days: Bullying, CPR, MCAS, and the Massachusetts framework and curriculum.   Where are the trainings on mental health, trauma, adoption/loss / grief, and mediation for children? I wanted to know.

I wish that a PTO would be open to teaching teachers about ALL children. Not just the soccer kids!

Teachers have an amazing and unique job to be with children 6 hours of the day, to teach them a variety of subjects.  But what about skills of learning what do in a difficult situation and how to deal with problems so that society accepts you as a child?  I believe that is the responsibility of the community, school and parent.

Let’s discuss the elephant in the room and get real results!

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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When parent voices pop up

August 29th, 2016

Logo_Portal_POPWhen I first began talking openly and publicly about my son’s mental health challenges, other parents would pipe up about their own experiences.  I expected this.  What I didn’t expect was the number of people who pulled me aside in the ladies room or followed me to the parking lot to share that their daughter already had 5 diagnoses and was only 12 or that the insurance company wouldn’t budge an inch for treatment their son needed.  They were parents, aunts and best friends who were uneasy talking publicly but had interesting, often important things to say.

I remember one mom, a confident professional, pulled me aside but had a hard time coming to the point.  She first complimented me on my necklace, talked about the weather and asked how my son was doing today.  Her 13 year old son had been sent home from parochial school because he obsessively drew pictures with blood dripping from the ceiling, the walls, the trees, the buildings and most everything else.  They didn’t want him to come back. “No one at work knows, she confided.  “And I don’t know what to do next.” Ironically, we had just been in a meeting about transitions.

I wondered, “How do you capture those voices and experiences so they can be part of the conversation, just as if they had spoken up themselves?”  I decided that one wonderful way is through surveys.

Now, let’s be clear.  What I mean here are parent-designed, parent-piloted and parent-analyzed surveys.  The kind where parents tell you what THEY want you to know, not necessarily what researchers might want to study.  The kind where the questions are crafted to be parent friendly in tone and wording. The kind where parents often pour their hearts out when asked to answer, What else do you want us to know?  Some even write, ”Thank you for asking. No one else ever has.”

Parents respond to our surveys in droves about specific topics such as waits for services or their worries about privacy.  They care deeply about communication with their child’s providers or school staff.  They feel conflicted about psychiatric medications, even though most report that it works, helping their child get through the school day, manage his moods or even help keep her out of the hospital.  They report jaw-dropping experiences with stigma again and again.  They have important and interesting things to say.

Yet, they are rarely asked their considered opinion of the mental health services their child receives either by provider agencies delivering the services or state agencies funding them.  (They might be asked if they like the service but aren’t asked for specifics or to write about details they care about.) They are seldom given the opportunity to decide which outcomes matter to them and their families.  Is it school attendance for their child or is it more parent time with the other siblings? They are unlikely to have the chance to write a review as they can do with other services they purchase.

That’s so 1999, isn’t it?

The retail and hospitality industry completely understand that in today’s world, customer voice can have a major impact on their business and reputation.  Anyone can leave a review on Yelp, amazon or TripAdvisor, reviews that are there for others to read before they decide to buy.  Long gone are the days when customers called an 800 line or wrote an email.  Online reviews and opinions are easy to find and read, comment on and add to. Ideas about customer service are shifting rapidly and in the customer’s favor.

The consulting firm Walker, said in their report “Customers 2020″ that by 2020, customer satisfaction, more than price and product, will be the key determinant of success.  Customers leave more often, they noted, because of poor quality service than because of price considerations.  Unlike mental health, companies are pretty unlikely to blame the parent, um, customer if they say the product doesn’t meet their needs or they don’t continue using it.

The children’s mental health system lags far behind. Of course health care, especially children’s mental health care, is not the same as a car dealership or fancy hotel.  It’s harder to actually get into treatment or services for starters.  There are eligibility or medical necessity or determination criteria to be met.  There is a shocking shortage of professionals and openings.

Health care professionals are beginning to realize, however, that customer or patient satisfaction matters.  According to Jeffry McWilliams, a physician who writes for KevinMD, customer service in a health care setting means spending time with each patient and treating him or her with respect and courtesy.  It’s about effective communication as much as effective services.

Low parent, um, patient satisfaction has other consequences, too.  For every person who complains, there are 20 more who do not, but are unhappy.  70% of people who received unsatisfactory care won’t come back to that facility or provider again.  75% of dissatisfied health care consumers talk about it and will tell 9 family members or friends.  I can vouch for the last one.  It’s a much larger number if the parents are on social media.

So, back to those parent surveys.  Last spring, PPAL posted three “pop-up” surveys and parents rushed to take them.  They answered questions about access, about medications for their children and about stigma.  Many of the questions were the same ones asked over the last 15 years and many of the answers were the same ones as well.  Parents had interesting, often important things to say.   Three of the top findings included:

Parents didn’t have to pull me aside to tell me how they wait preposterous amounts of time for services, although they do.  They took the survey online. The answers of the outspoken parent and the quieter one combined in the pop up surveys to point out the same waits and gaps.  No one has to corner me in the ladies room to tell their stigma story or how they spend more time looking for a prescriber than staying with one.  (Some still do that, too.) They just went on line and told their story there.

Parents are the amazon reviewers, the mystery diners and the consumer reporters of the children’s mental health system.  They are savvy, practical and honest.  They can certainly point out what is working and what is not.  My fantasy is a TripAdvisor-like site for children’s mental health with a free app for every parent’s smart phone.  Maybe then parent satisfaction would pop up as a priority.  I know they would have interesting and important things to say.

 

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