Tag Archives: parents

Residential programs, partnering and loud music

January 16th, 2018

When my son was 16, I drove him two and a half hours to his new residential program.  Amazingly, we both stayed calm, chatting about inconsequential things and turning the music up when things got emotional and we needed to stop talking.  This was a moment I had staved off since he was eight, the first time someone suggested he go into a residential.  I’d thought of it, scowled at the thought, rejected it, marshalled arguments against it and yet, here we were.

His arrival was anticlimactic.  The staff grabbed his things and he went off to browse DVDs and video games he wished he had at home.  I was reassured, signed things and was given a list of ways to reach the program.  On the two and a half hour ride home, I alternately gave myself a lecture, sobbed and turned the music up.  (Yes, it’s a family coping mechanism.)

The first night was really hard.  I woke up a lot, half listening for my insomniac child to wake up and wander in the night, feeling an emptiness in his room down the hall.  Our dog, Bonny, who usually slept on the foot of his bed, meandered around not sure where she should sleep. We got through that night and the next and the next. We adjusted to having space where he used to be, a space that would be filled only when he was home some weekends.

Over the next couple of years, I made that two and a half hour drive a lot.  Some weekends I would drive out Saturday morning, take my son on day-long outings, return him to the program and then come home at night.  The next trip I would make a round trip on Friday so he could come home, then another round trip on Sunday to return him.  I listened to a lot of loud music in the car.

Sometimes I say that if my family were a game show, we would be Let’s Make a Deal.  This time, my son and I had made one of our deals – if he went to the program, I would be there on most weekends. It was a long drive, but he was part of our family. I called a lot during the week, calls to him, to his program therapist and often to his teacher.  When staff wanted to treat his eating issues as a behavior, I called, explained, begged, threatened and called up the ladder to resolve it.  When there were conflicts with others or medication issues or he had a favorite item stolen, I jumped in and advocated for him. I took him for his haircuts, to buy clothes and all the things a mom does.  I held on to my rightful place as his parent with an iron grip and didn’t let go.

It turns out this was one of the best things I ever did.

Residential programs in this state and others are changing, or trying to, so that they shift to make space for parents as partners.  Lots of times this is still aspirational instead of reality, but with each little change there is no going back.  The national initiative, Building Bridges for Youth, tells residential providers that children have better outcomes when their parents visit, stay in touch and are involved both in the short and long term.  They also have the research to back it up.  Children go into residential programs as family members and when they are there, they remain part of their family too.  Families have incredible knowledge and resources to offer and parents have enormous expertise to draw on.  Yet, sometimes parents are welcomed, sometimes ignored, sometimes disrespected.  Often, all three attitudes can be found in a single program.

By the time my son entered a residential program, I was pretty exhausted.  I had been fighting, advocating, collaborating and juggling for a very long time.  We both had mixed feelings about it, but had limited options.  He had been turned down by six day schools and eight residential programs.  He needed someplace to receive therapy and finish high school.  I needed someplace where they had had teens like him before and I could trust that they knew what they were doing.  I already knew that clinical and program expertise didn’t always come with a parent friendly attitude, but I figured I could change that.  My exhaustion might have initially looked like acquiescence or passivity but it was soon apparent that advocacy had taught me a few things

It also helped that my son would ask staff if they had checked in with me when there was a change.  Even better, he often told them that he had to check in with me himself before he made a major decision.  The two of us didn’t always agree, but we talked things through and figured out how to get what was needed.  Sometimes, we made a deal.  I frequently told him that advocacy was the family business.  He would say, “I guess I’d better learn it, then.”

Like many parts of the mental health system, residential programs are usually designed to operate in a way that works for the program.  Routines and schedules are the same for everyone.  Same for meals and activities.  Parents can see the program as unwilling to be flexible and programs often see parents as unwilling to change.  When an engaged pushy parent like me comes along, programs have to decide if they want to cheer or groan.

Being very involved was one of the best things I ever did, lengthy drives and all.  At first I was involved because, well, that was how I parented a son with mental health needs that mushroomed over the years.  I was also involved because it was part of the deal I made with him and keeping promises was important to both of us.  I came to realize that my regularly showing up, calls, chats with staff and meetings with therapists set the groundwork for troubleshooting when we needed it.  It blurred the lines between us so we were more of a team.  It created respect and sometimes, admiration among us.  It probably led to better outcomes, too.  Cue the loud music.

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7 tips from a support group fan

January 23rd, 2017

Okay, I’ll admit it.  I’m a support group fan.  I think groups can do lots of things all rolled up in one place – support (of course) and hearing about resources you never knew were there.  But other things, too, like receiving high fives for getting through a tough school meeting or finding shortcuts to strategies you need.  Through it all, you know you aren’t alone.

So what’s the draw in this age of social media?  Online, we can congregate, stay in our sweats or PJs and never leave the house.  It has to be worth it to venture out.

I started out as a support group member.  My son was seven, having meltdowns three or four times each day and I was overwhelmed and fresh out of ideas. I was running to appointments, talking to the school every day.  Regular errands, like going to a grocery store were a surefire way to add in more fireworks, turning a half hour task into 90 minutes or more.  When I looked in the mirror I saw someone who was discouraged and depleted.  She needed help.

I had my own therapist, as did my sons, and they were great.  But they hadn’t lived what I was living.  They didn’t know the mixture of dread, fear, sadness, anger, guilt and exhaustion I lived through each day.  I went looking for someone like me.

I didn’t find her. Instead, I found another mother who was just as overwhelmed and depressed but had great ideas on how to fit in some mental health breaks during the day.  I found parents whose children had a range of special needs and they had a menu of strategies for success with their insurers and their schools.  I heard about books to read, movies to watch and experts to seek out.  I met people who reminded me to laugh. Evem better. they were all in one group. My knowledge increased and what’s more, I learned to see value in the little successes and try out new ideas – often ideas I hadn’t had myself.

We moved a year and a half later and it was brutal losing that group.

Not long after, someone asked, “Why don’t you start your own group?  You’ve been a group member,” she said.  “It will be a piece of cake.”  Not knowing what I was getting into, I said yes.

The first meeting seven people showed up.  They weren’t sure why they decided to come and I wasn’t sure what I could offer.  At the end of two hours we were laughing, sharing stories, eating food and rooting for each other.  We were all parents who had children with emotional and mental health issues, some with diagnoses, some without.  By the end of the second month, people were talking and meeting outside the group.  By the end of six months, they were going to hospital and school meetings with each other.  One mom broke her ankle just before Christmas and another went shopping with her, carrying bags she couldn’t manage on her crutches.  “It’s not even my holiday, the other mom told the group. “I’m Jewish.”

Every support group has a kind of individual chemistry and a lot of that comes from the facilitator.  If you are kind and compassionate, your support group will be too.  If you like rules, it will be orderly and if you like laughter, people will share their humor.  If you are curious, hopeful, determined, accepting and friendly, those qualities will show up.

Although we had a short list of group “rules” two were repeated often by group members.  They were, “what’s said in the group stays in the group” and “no blaming.”  A third rule – the group belongs to the group – was taken as a given.

One mom, Mary, would come to the group regularly with her husband.  She had a teenage son with bipolar disorder and told us he got it from her.  She felt so guilty, she said, that she passed on the bipolar.  Another group member put a stop to that.  “There is no blaming here, not even blaming yourself.”  Once Mary came and was frazzled, spoke rapidly and had difficulty staying still.  “I’m off my meds, she told us.  “I’m worried I might be pregnant and I don’t want to take a chance my psych meds could hurt a child.”  She couldn’t afford a pregnancy test until the next paycheck.  Another group member grabbed her car keys, ran to the local Walgreens and bought a test.  She and Mary disappeared, then came back with the results, which were negative.  Mary promised to start her meds again that night – she did – and group members called to be sure she was back on track.  She was supported and directed but never judged.

Tell me, can you do all that online?

Another member, Maureen, found a way to make us laugh no matter how dire things got in her life.  Her nine year old son had tried to jump out a classroom window.  Instead of agreeing that he needed special education, the school system moved his class to the first floor, so he wouldn’t have far to fall.  Her son also saw things that weren’t there.  One day, she told us, he ran to her and said there was a man in his room and the man was jumping on his bed.  “Honey, she responded, “I should be so lucky.”

I began a second group a few months later and both lasted for seven years, until I began a new job and couldn’t do it anymore.  It was even harder leaving those groups than it was my first one.  Each meeting was like watching a soap opera or a reality show and I would be drawn in, rooting for people, holding my breath at other times.  I was left wondering what happened next to everyone.  Occasionally, I would hear a snippet, get an email or connect with someone online.  Considering what they had braved, most everyone was doing pretty well.  They certainly deserved it.

I’ve thought a lot about what makes a group work, because when it does, there is nothing like it.  Here are my top 7 tips.

1.  Create a community, not a group. Groups have a set time, specific rules and guidelines.  While those are important, they don’t make a group successful.  When members feel like this is their community, things take off.   Communities are built on a sense of belonging, shared experiences and knowing what you can expect from each other.

2. Share the emotional connection. The members of the group will come looking for someone just like her, or him.  Like me, they won’t find it.  But their experiences will echo one another’s.  In one group, a mom described her son’s intense depression and how isolated he was.  “At least he doesn’t use drugs,” she said.  The next mom said, “My son uses,” and went on to describe his isolation and how it tore her heart.  They connected that night and sat next to one another for the next several meetings.

3. Emotional safety is essential. Parents live with chaos at home and frequent unpredictable behaviors. When a group has group rules, a lack of judgement, a commitment to honesty, clear boundaries around confidentiality, members can breathe.   Sometimes you don’t get all the rules right, though.  I was terrible at ending on time, often finishing a conversation in the parking lot.

4. The facilitator must have personal experience raising a child with emotional and mental health challenges. Some experience with support groups is pretty important, too, as facilitator training alone doesn’t do the trick.  Culture matters a lot as well especially when groups draw from communities that are diverse.  Remember, the facilitator is not the authority, but should be the catalyst for creating a community.

5. Foster networking and mutual support.  Parents often feel pretty alone.  They are like Atlas holding up the sky, not able to let go of the responsibility.  Groups work when the group doesn’t just support the members, but the members support one another.  I knew one group leader who did a lot of one-to-one work with parents.  When she formed a group, the members tried to continue their individual relationships with her, instead of forming new ones with each other.  It didn’t work out very well. Some group members will cook for the group, make calls, form carpools or even advocate for one another.  It’s their group so they know what works.

6. Continue to grow the group. Group members come and go, but if you’re lucky you have a mix of long time members and newer ones. It’s hard for parents to locate groups, so facilitators have to get creative when marketing.  I took a lot of calls from parents before they ever stepped into a meeting.  They’d say, “Do you think I’ll fit in?” “Do I have to talk?”  Facilitators have to reach out – often by phone – before meetings, afterward and in between.  Connection fosters community.

7. Nurture future leaders. When you run a group, everyone at the group watches you.  It can be unnerving at times, but this is how we all learn.  When someone offers good advice or brings in a new resource, sit back and smile.  They might be doing this too someday.  We’ll need them.

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The imminent demise of parent voice, sort of

January 4th, 2015

Talk to the handThe other day I opened my mouth and my mother came out. This happens to most of us as parents whether we expect it or not. There are phrases that you heard over and over again as a child and you find yourself repeating them. Maybe it’s a prediction (Someday, you’ll be glad you had to say “please”), maybe it’s encouragement (You can do anything you put your mind to) or maybe it’s just the way you say “I love you” to your child. What all of them have in common is that in your family, this was parent voice. It’s passed down from generation to generation.

Parent voice became a growing part of children’s mental health services through the persistence and persuasion of parent leaders. It grew from an individual voice to a collective voice asking for a role in our child’s treatment and a seat at the governance table. Progress was slow at times and while some providers and decision-makers embraced family involvement, others said to themselves, Aren’t parents part of the problem?

The amazing thing was that parent voice incorporated what families said was important, not what others thought should be in it. (Note: it’s often called “family voice” to include grandparents, foster parents and others raising children, but it still comes from the same set of experiences.) Parents said that each family is unique and their strengths should be the centerpiece of any care plan. Parents said that they didn’t want others raising their children, even if they were in out-of-home placements. Parents said to respect their culture, their decisions and their expertise. Models such as family-driven care were developed and parents became trainers, evaluators and colleagues.

In many ways, parent voice had its heyday in the early 2000s. There were still too few services and many remained deficit based. But parent voice was recognized in many places as unique and indispensable and more and more attention was paid to it.

Most parent leaders (like me) thought that there was room for parent voice alongside adult consumer voice, youth voice, provider voice and professional perspective. We often tolerated being the token parent representative and advocated for more parents in various roles. We partnered with others who had “lived experience” to promote its value. We advocated, we collaborated and we thought we had claimed solid ground.

Initially, we argued with adult consumers, often in their 40s and 50s, who had worked to retain control of their treatment decisions, take back their strength and gain respect. Some were uneasy with parents, especially when their own parents had made decisions about their care that they felt was harmful. But we talked and found common ground. We explained that children are not little adults and do better when their parents are their advocates, their supporters and often, their voice. Parents have their own unique experiences, too, which often galvanize them into seeking changes in the system that provides services for their children.

Then along came youth voice, which we also promoted. After all, in most families you want your teen or young adult to be a critical thinker, have skills to deal with complicated systems (including behavioral health) and craft a life that has meaning and makes them happy. That’s what parents do, right? My own son used to watch and listen as I talked to his insurer or argued with his school. “I want to be as good an advocate as you are,” he would say. The original metaphor for family driven care was a van, with the parent driving behind the wheel and various professionals, educators and other providers giving directions and expert advice. Eventually, as the child grew, he or she became the student driver, then the sole driver of the car. But the parent was still there, often riding shotgun.

So what has happened to parent voice? Well, sometimes the very things we work for and want to see happen create changes in unexpected ways.

In the introduction to Family Peer to Peer Support Programs in Children’s Mental Health: A Critical Issues Guide, three types of family support are identified. They include the family partner, often seen in wraparound; paraprofessionals, who augment the role of providers; and family peer support which provides support, information and advocacy. The Guide points out that family peer support – which strengthens parent voice – is at a critical crossroads. This remains true today.

In Massachusetts, as in many states, family partner roles have grown exponentially. They are well defined and often incorporated in mental health services. Clinicians are becoming more accustomed to working with family partners (which is excellent). These roles are well defined and family partners coach and assist parents in using their family voice to help determine their child’s care. But there it ends. Here, parent voice is about individual treatment, not advocacy or systems change. Family partners are essential but they are also becoming the way we do business. They are just one perspective among many in their organizations; a note in the melody, sometimes a minor chord. We worked hard to grow the numbers of family partners but their role is not robust enough to carry parent voice into systems advocacy.

Ten years ago, youth voice was a fragile and new sound. There were a handful of youth in the public arena and no one was sure if their experiences were unique or represented hundreds of others. Family voice included parent voice and youth voice and while they weren’t the same, we were all used to that. After all, our own families included both types of voices and we somehow made it work. Organizations like mine fostered youth voice and listened in delight and awe as it grew.

In some discussions about policy and practice, youth voice is now stronger than parent voice. It is still unexpected, often unedited and startling. But there is a subtext at times that when parent and youth voice don’t align, everyone must choose which to hear and honor. It reminds me of those early times with adult consumers when we saw parent and consumer voice having too little common ground. In our families we expect different voices and each is important. The same must be true in public conversations as well.

Parents have also recounted their unique experiences in raising youth transitioning to adulthood. Sheesh, I know this one well. It’s a kind of dance with your son or daughter where you step forward to embrace and support and cha-cha backwards to create space for independence. I recently heard the phrase, “parents as adult allies” where parents were tossed in with other adults in a young adult’s life as supporters and cheerleaders. This worries me. Parents are unique in their son’s or daughter’s life. Their relationship has many layers and textures and nuances that no one else can come close to. We all have a learning period – sometimes a long one – where we find out when to offer advice, when to listen, when to be emotional and when to use your poker face. Sometimes we are allies, sometimes we aren’t. But we are always something no one else can be—parents. Parent voice needs a recognized place during transition to adulthood.

Parent voice has changed. Sometimes it is institutionalized. Sometimes it is muted. Sometimes it is seen as relevant to individual care but not needed for program design, evaluation, policy work or systems reform. Wherever we find it, we should listen. Parents continue to experience the behavioral health system in ways no one else does. Each week I talk to a parent who wants their journey and their story to mean something; to make it a little better for the parents coming after them. When I open my mouth and my mother’s voice comes out, it says “You can be anything you want to be.” Parent voice can change the world too. We need to value it enough so it does.

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Why children are not little adults, take two

December 8th, 2014

Maria's granddaughters“Children are not little adults,” I said at a recent meeting.  “They go home to families, not their own apartments.  They go to school; they are not employed.  And when they have mental health problems, it’s episodic, not chronic. “

I haven’t had to say that children are not little adults for quite some time, but I find I am saying it a lot lately.  When I first began this work, there was a wonderful paper written by Trina Osher (who was then the policy director at the Federation of Families for Children’s Mental Health) called “Why Children Are Not Little Adults.” (Click here to read it.) It was targeted to managed care companies and I quoted it a lot.  We were seeing the beginning of a shift to insurance (including Medicaid) as a primary funder and designer of treatment and services for children and teens with behavioral health needs, a shift that continues to this day.

It was important that those creating and approving services understood that what worked for adults and was appropriate for them might not work for children.  Children, Trina Osher wrote, “continuously require the support of their parents, siblings and other family members.”  She emphasized that there must be respect for the family’s culture and beliefs.  Children have a need not just for food, clothing and shelter, but for protection, which makes them especially vulnerable. Their mental health and physical health needs are intertwined.

Many of these ideas became familiar to others – providers, funders, state agency staff and educators.  At meetings, I often heard others articulate them so I didn’t have to.  Now, fast forward to today.

Today, we are having discussions about health homes and integrated care.  We’ve expanded our understanding to recognize that children and youth who have experienced trauma or have co-occurring medical or substance use needs should be included when talking about children with mental health needs. Yet, I find I am reminding people once again that children are not little adults.  Why is that, exactly?

It’s easier to design new systems (such as integrated care) for adults and retrofit children and youth into them.  It’s more efficient to create priorities for the mental health system overall and say children are included as SAMHSA has, instead of making children, youth and families a priority all its own.  It’s less trouble to pay for traditional treatment that works (at least sometimes) for adults, such as inpatient and outpatient and call it a day as many private insurers do, instead of reimbursing treatments that work better for children.

However, there is one place where I still don’t have to remind folks that children are not little adults.  That is any table where pediatricians sit. Like parents, they see children change and grow each year. Like parents, they encounter the many systems (child welfare, education, juvenile justice, child care) that they need to communicate to and coordinate with.

In a 2010 policy statement on family-centered medical homes, several well-known pediatricians outlined the issues that are unique to children and families when designing and providing care.  They contrasted them with the needs of adults, where the focus is on maintaining health, making decisions for oneself and moving toward recovery.

The pediatricians call the unique issues for children “The Five D’s. “ Here’s a quick recap:

1. Developmental changes. Children grow and change and their ability to understand, self-manage and participate grows too. Every parent knows this well. Treatment and services should maximize this amazing potential rather than focus on regaining lost skills (as with adults).

2. Dependency. Children are dependent on parents and other adults (they don’t go home to their own apartments, remember?) which calls for a collaboration with their family. Coordination with early childcare and schools is essential. This dependency decreases as children grow older and their autonomy increases, which is another developmental change.

3. Differential epidemiology. Simply put, pediatricians don’t see many chronic health conditions such as high blood pressure, diabetes and heart disease in children while they do see a fair amount of obesity, mental health conditions and asthma. Big need here for prevention and care coordination, which are not emphasized in the adult world.

4. Demographic patterns. While poverty in elderly populations has dropped dramatically in the last 40 years, child poverty is little changed. As a group, children are also more diverse than adults (Horn, Beal, 2004). Poverty and diversity contribute to many children being vulnerable to poor health and poor quality of care.

5. Dollars. While overall costs for health care for children are small compared for adults, there are “50 different ways” to pay for it. The good news is an investment in children can produce substantial savings over a child’s lifetime.

The bottom line is that we are once again seeing the health care system shift. When “Why Children Are Not Little Adults” was first published, we were seeing the growth of managed care in both private and public (Medicaid) insurance. We know that the treatments and services are that available to children, youth and families are often determined by what funders pay for. Today’s discussions are also groundbreaking. New approaches to care are being designed and funded including medical/health homes, integrated care and the possibility of expanding mental health care under federal mental health parity.

To make that happen, we need parents and pediatricians at the table. I know they will talk about what works for children and youth and why it’s important to include families. I know they will talk about families from diverse cultures. I know they will not confuse the needs of children and youth with those of adults. And they shouldn’t. We simply can’t afford to.

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You know it when you see it

October 10th, 2014

hands2When my son was 9, we had our first in home therapist.  This was a brand spanking new idea at the time so we could– and did — invent the service as we went along.  My son had had 6 hospitalizations, tried 20-something combinations of medications and gone to countless outpatient visits at that point.  Some of these treatments were quite successful — for a while.  Some were pretty ineffective.  But it was all the system had to offer and all my insurance would pay for.  I used to grumble that our choices were inpatient, outpatient and see-you-later-alligator.

Then we were offered this new thing — someone who would come to my house and work with all of us — my son, me and his brother.  What a concept.

Ian was a social worker cast from a different mold.  He talked about his own experiences when it seemed important or to build common ground.  He suggested new approaches and things to try based on his observations and sometimes, his best guess.  He listened to my ideas (herbal supplements, meditation tapes, yelling at ‘the voices’) and helped me implement them. He didn’t insult me by suggesting star charts or baffle me with gobbledegook.  Instead, he partnered.  He shared, he asked and he listened.  He was respectful and interested.  He wasn’t afraid to admit to bad ideas and applaud the ones that worked.  He was eager to hear about resources I found and learn about strategies that were new to him.

In short, he really and truly partnered.  He wasn’t the leader and me the sidekick.  He wasn’t the expert (though his expertise was wonderful) and me the learner.  It was clear from the start that we were doing this together.

Several years ago, when the children’s mental health world talked about partnering with families, we focused on defining what the family member would need in order to be a good partner.  We worked to ensure that their voices were heard and their participation was supported.  The word was out: families were welcomed, accommodated, included and recruited.  We changed the environment and the team composition. But here’s the catch.  Parents have always come to the table–whether it’s the treatment, IEP or policy table–and they always worry they might feel blamed or mistrusted or seen as unsuccessful (what parent has not been unsuccessful?).   Being included is not being asked to partner.  In order to partner, a parent has to feel they have a meaningful impact, not just  a role. Parents can’t make that happen by themselves.

What hasn’t been done so well is define what the professional, the provider, the state agency person (or whoever it is) looks like when they partner.  Some, like Ian, know how to do it and do it right.  For others, it’s not easy or intuitive.

There are a lot of ways to define partnering and to measure it.  One of the best lists I’ve seen is from Brian O’Neill at the National Park Service. In his 21 Partnership Success Factors he notes that partnership needs to be a way of thinking that includes trust, leaving your ego at the door and respecting the right to disagree.

We talk about systems partners and family partners.  We discuss parents partnering in primary care, behavioral health and education.  But while the frameworks have grown and the opportunities are there, we have a long way to go.

A lot of the partnering we do comes from a head space, a thinking space; somewhere made of definitions and verbal structures.  But it’s not something we experience from the outside looking in.  It comes from trust and from hope and from belief.  Trust in one another and trust in the path forward.  Hope that we can accomplish something, maybe even something small, that will amaze us, and fortify us and validate us.  And belief that even in a still-broken system and the experience of many failures that there is a near future and a far future that is better than right now.

Once you’ve been a full partner, nothing less will do.  And to be fair, it’s a more demanding role for parents too.  We have to do the work we’ve committed to even when we are tired, listen with the same respect and interest that we want in return and often stretch beyond what we thought we knew.  When we look around the table to see that parents are participants and stakeholders, we need to up our game and expect that meaningful partnerships should be the norm for all of us.

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