The imminent demise of parent voice, sort of

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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8 thoughts on “The imminent demise of parent voice, sort of

  1. Lisa, this is deeply thought – provoking, nuanced and relatable. Good for you for deepening this important conversation within our collective efforts to do what’s right and best! Frank

  2. Lisa, Frank Rider is right again: “deeply thought-provoking, nuanced and relatable”. This is a piece that should stimulate a much needed, deep dialogue — perhaps modeled after the CMH Network’s dialogues on Assisted Outpatient Treatment. Thank you, as always, for being the “unabashed advocate” and an inspiration to all of us. // Elaine

  3. Thank you, Lisa. This is a much needed conversation. As we incorporate more parent voices(a good thing), it sometimes feels like it’s a watered down version.

    1. This is indeed. This is where parents need to feel like their voices are validated. I’m so thankful mine and my husband’s voice is heard in the school districts our boys are in but often time it’s the parents of our boys friends who do not want to listen to what we have to say and therefore causing us to our children to be left out of social situations with other children who are really friends but only at school.

  4. Lisa this conversation really resonate with me professionally and personally! The second from the last paragraph captures the essence of the issue in my opinion. I welcome the discussion of where do the parents fit into the youth movement. As we come out of the holiday season I just finished my dance with my son. I wore all the hats one can wear cheerleader, confidant,adviser and finally just plain old mom. I agree there is so many layers to my relationship with my adult son and as always I wish I had an instruction manual. Just as I often wished for one throughout his childhood. Words shape reality with that thought in mind I never wanted nor intended for the term Adult Allie to diminish the role a parent play in their child’s life. I welcome the discussion with everyone as I believe parents will always be their child’s strongest supporter.

  5. Very well put Lisa, this is soooooo relatable to me.

    I would also add that many adult children, especially those that did not have the benefit of CBHI services during their youth (whose parents trusted that the professionals that they were working with – when the professional said “trust us, we know what we are going” still need guidance and assistance with advocacy. Someone deep in the grasp of their mental illness may not be capable of making rational choices and decisions. The family voice continues to be needed even more for these grown-up children…

    Sometimes, because adult children have not experienced much success in life, parents want more for their children than their children want for themselves. Low self-esteem lessens their want or need for expectations in life, Their participation in the process has left them with a stale taste, and bad past experiences with ‘professionals’ make them hesitant to seek help because they feel and believe that it’s useless to try… With that said, self advocacy does not always occur in a positive way for some. Sometimes self-determination is another way of saying that it’s all right to self medicate, wallow knee deep in garbage, and ‘hang out’ and do nothing all day – every day… When systems continue to tell parents things like; ‘they have a right to live that way’, and ‘we can’t help someone that doesn’t want to be helped’, and ‘they’ll probably have to hit rock bottom before they decide to get help, and hopefully that won’t be too late’ – there is still something wrong. We, as parents, need to continue to sit at tables, and have a strong voice. No one knows the journey of their child/family better than a parent. When we say “I love you” to our children, and tell them that we care about their outcome, no one else will mean it the way we do.

  6. Lisa, we have been around for a long time and have experienced the evolution of the family movement. The voice is still there but the audience is not listening. I feel like the systems rather than incorporate what is new, like youth voice, with the old (family voice), they toss one out because they can’t concentrate on both. Families have had to learn how to walk that fine line and now it is time for us to teach the systems how to managed more than one voice. Thank you for your blog. You are still amazing.

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