Family involvement and the older adolescent: Where does advocacy stop and interference begin?
 "I want to know - this is my child, [and] I want to know what's going on in her life. She has to make decisions, that's fine….just let me know what it is, what's going on." - a Clark County, Washington, caregiver
Family involvement and family participation are closely held values in systems of care and in many children's mental health services. Many individuals and groups have fought hard for the right of family members and other caregivers to be full partners in treatment planning, service planning and implementation, and policy development. Family advocates must maintain vigilance to ensure that the family voice is heard, is respected, and has influence.
Given this backdrop, what then is the family's role in treatment planning for older youth? And what is the family's role in advocating for the services and policy changes that are needed to best serve the needs of older youth and young adults? In most states, an adolescent can make decisions about accessing health and mental health services at age 14, 15, or 16. After that age, no parental permission is needed and family members have no automatic right to information. This first step into adulthood can be a point of tension for all youth and their families. However, for youth with a mental or emotional disability there may be special considerations. These youth may need special support to help them manage their medication, impulsivity, or drug and alcohol use. All families watch their young person step into adulthood with trepidation, but families of young adults with emotional disorders may have additional reasons to worry about the youth's safety.
Youth, on the other hand, are often anxious to take steps toward adulthood such as moving out of their parents' homes and getting a job. They may be resistant to their families' continued involvement in their lives. Yet family members are one of the best sources of support, both emotionally and materially, for all youth, and rejecting family involvement may leave the youth without a safety net. Moreover, just as family members have done, young adults need to learn advocacy skills and build their own advocacy groups and power base. They are the experts on their own needs and preferences-far more so than their parents can be.
Negotiating the transition to adulthood raises many difficult questions about how to balance the rights and needs of families and young people. Consider the words of this caregiver:
"I think that one of the things is that it's always been my husband and I and whatever group we're working with at the time, and we've all…tried to put those puzzle pieces together, and try to get [our child] to try to fit into that puzzle. And so, I think when [youth worker] came in and, you know, said, 'Well, if that's what [your child] wants to do - it's up to him', I went - it was kind of like a shock, like, 'Okay, guess I have no say in this'. And so when she said that…it was like, okay…you know, just kind of shut the door." -another Clark County, Washington caregiver
Your thoughts and experiences around this topic are of great interest to us-- the following questions are meant to spark additional comments:
- Does this mean that there is no role for families to continue to advocate for needed changes in the system of services and supports for transition-aged young people? Or should they only advocate for the needs the young adults have expressed?
- What is the balance between family participation and youth involvement in planning and monitoring services and supports? Who makes the decision when the youth and family want different things? How may these differences be resolved?
- What is the balance between family-led advocacy and youth-led advocacy? Who should be in charge of identifying and prioritizing issues? What is the balance between helping youth develop advocacy skills and winning a policy reform?
- Should our systems of care be family-driven and youth-informed? Or during the transition process, do we move to youth-driven (or youth-guided) and family-friendly? Is there language (and practice) that accommodates a range of situations without forcing families and youth into polarized camps?
As always, we encourage you to post your thoughts and comments.
Your thoughts…
Comments:
 You can advise as to receive Individual Health Insurance and also as Compare health insurance quotes WBR LeoP Posted Saturday, January 20, 2007 at 01:58 PM
Every creature needs to rest. Giraffes, little babies, elephants, dogs, cats, kids, koala bears, grandparents, moms, dads, and hippos in the jungle - they all sleep! Just like eating, sleep is necessary for survival. WBR LeoP Posted Friday, January 19, 2007 at 09:00 AM
I have a 12 year-old special needs child and this is fascinating. So-- when youth start making their own dangerous, irresponsible and unhealthy decisions regarding their behavior& treatment when can a parent stop paying the bills? Many of us do not qualify for SOC care--we have private health care or we make too much money---and we pay for a lot of treatments (OT/PT/ family therapy, etc. out of pocket) so when are we allowed to stop paying--when the youth decides it's their right to screw up their lives and the therapists/clinicians support them? Posted Monday, January 17, 2005 by Cindy/A mental health system p at 09:39 AM
As a psychiatrist who has specialized in treating adolescents for 30 years and as one involved in System of Care work in King County this discussion is near and dear to my heart. I have so much to say, but let me hit on some relevant observations based on what I have read so far.
1. Adolescence is a very new phenomenon in human history. Only for a hundred years have we even recognized it as a developmental stage and only in the last 60 years has it had any particular character or norms - and these have shifted every decade, sometimes drastically. Thus we are ALL flying blind and inventing it as we go along.
2. The phenomenon of adolescence has had stunning advantages, first for western culture and society, an now for almost all corners of the world. Youth have been freed from automatic expectations of behavior and roles in their societies, and when given family and social support, become better educated, more flexible, more creative and more free citizens. This had been associated with the huge advances in technology, artistic advances and improved living conditions in the west, and now much of Asia. The evolution of adolescence has also been associated with the many social problems of our times. It is important to have this perspective so one can place ones personal struggles as a parent or a teen in context of these complicated social forces.
3. Youth have an expectation of freedom, privacy, adventure and creative expression. Sometimes the manifestations are silly, outrageous, offensive and obnoxious and occasionally downright dangerous. Much of what youth do is never known to their parents and youth finess their way through misadventures without severe consequences. Doing things without parental knowledge or permission is and will always be one of the thrills of being a teenager. Other times what youth come up with in their thougths or activities is stunning in its wisdom and creativity and is easily embraced by families, schools and society. I believe you can't get one without the other.
4. Sex and drugs and rock and roll are still the big issues. As a youth you have the freedom to explore sexuality, substance use, various troubling or offensive cultural phenomena such as misogynistic rap music, bullying, racial intolerance, vandalism, etc., etc. Many youth have their low moments, caught up in bad judgment, and acting in ways they really have remorse for later. That will happen in places where youth have rights and where they don't. It is inevitable and every young person I know is keenly aware that such stuff happens. Most youth know that they can get any drugs they want, if they have cash, within minutes by asking the right people at their high school. With such freedom to get into deep trouble, most kids don't, or dabble and then self correct.
5. Parents have power. Kids love their parents and families despite themselves. The tragedy is that even kids with abusive families, bottom line, love their families. Youth yelling and screaming obscenities and their parents love their families. Kids tormenting their younger sibs love their families. Family process can get very very messy at times and God knows parents with difficult teenagers need support from professionals and other parents. What we have demonstrated in the wraparound process is that empowered families do find their strength and come to understand their power with their kids, even those who are expressing emotional distress or a mental illness in the most horrific ways. Parents standing for something, letting youth know what THEY as parents believe is right, has influence. Guilt induction is a much undervalued and underappreciated technique in dealing with troubled youth. Exercising the economic controls a family has at its disposal, withholding services, even at times interfering with a teenagers sacred space - their individualistically decorated room - are all powers that parents have that are untouched by a states policy on youth rights.
6. Parents can learn skillful ways of applying their power in the lives of their teens when their kids have crossed the line and are NOT self correcting in the excesses of youth culture. Humor works. Blunt, calm, matter of fact recitations of consequences, sometimes touched with pity and regret for having to crack down, can be very effective. Families are NOT democracies. I also believe very strongly in the power of "higher selfishness." It is more effective to let a youth know that their coming in at 3 am and waking up their mom is a problem in that mom looses sleep, rather then presuming that the poor child is in mortal danger on the streets at 3 am. The kid may be, but pointing that out is not going to be received well.
7. True mental illness, sometimes mental retardation, developmental disabilities such as Fetal Alcohol Spectrum Disorders with its consequence of very immature judgment and impulsivity, can place youth at special risks where they are constitutionally unable to handle their adolescent expectations or grow from some risk exposure. It is critical that the laws on At Risk Youth and Danger to Self and Others, through an Involuntary Commitment process be designed to appreciate the ways youth express mental health problems. Parent advocates should be relentless in pursuing this with state legislators - not picking on the "youth rights" issue. Most youth should have rights to obtain, or refuse, mental health and drug and alcohol services. Exceptions should be recognized and handled with judicial review. The juvenile courts have a real role in supporting parents. The laws should be examined to assure that parents have respect and a central role in court processes and in any consequences that involve detention. Juvenile justice involvement is much more relevant for most youth then hospitalization. The needs of mentally ill youth should be delt wiht within the juvenile justice system rather then that system punting to a hospital except in the most severe cases.
8. We need to accept that fact that most professionals don't receive special training on dealing with adolescents and are either wimpy about over the top problems with adolescents (gaining parental disgust) or are over identified with parents and do horrible diservice to the youth and family by braking confidence, over allying with parents or acting parental to kids. Helping youth weigh options from a more neutral perspective, using humor and creative sarcasm, providing information - all things noted by others in this discussion - is good work to do with teens. But most important, and my biggest frustration, is that joining with a youth in a treatment process needs to be understood from a youth perspective. Only the most yuppie families produce kids who positively regard "being in therapy." For most youth this is something to be endured, to be embarrassed about and to not be engage in at all. Only when the therapist is, from the kids perspective, transcending the therapist or psychiatrist role and becomes a mentor, a special adult friend who they can trust and forge a relationship with on their terms, does the treatment process mean much. And this demands NO artificial cut off (insurance companies be damned - I will just see a kid anyway if insurance runs out, with a realistic arrangement with the family.) Relevant treatment providers stay in touch with their "mentees" long after a treatment episode is over, they really DO CARE about the kid and will show up at school plays, sporting events, weddings, etc. A therapist worth their salt IS PART OF THE COMMUNITY with the kid and their family. Professionals must be willing to observe professional boundaries, but not according to some Freudian rule book. Adolescent mental health workers need to rewrite the rules of engagement kid by kid, based on the kids strengths and needs, as part of their treatment plans.
9. Last Point - 90% of the work I do is developmental support - getting kids safely through adolescents. I am a great believer in the "harm reduction" approach. This approach is profoundly respectful of the strengths within a kid. With a modicum of support, youth bonded to a therapist/mentor who helps them shape their approach to a sexual experience, helps them think through experimenting with drugs and alcohol, works with a youth to modulate their anger - and constantly affirms their healthy adventure seeking, fun loving, romantic aspirations, privacy seeking, self care potientials, - gets further then therpists who sit in shocked silence wondering how to get a kid to stop smoking marijuana, not go to drinking parties and stay away from bad boys or seductive girls. Understanding that adolescent development is a relentless process, that it can be a positive force, makes for a successful treatment venture for youth struggling to get back on that track once they come to accept that they have a mental health problem (in kid language - they got screwed up.) After accepting that the med plan is in their interest, that not showing up for their probation appointment is asking for trouble and that the truancy cops actually can be best avoided by going to school, then they can get back their lives and get on with the fun of being a teenager. Posted Tuesday, December 21, 2004 by Charley Huffine, MD. at 10:22 AM
Some Thoughts We Share
Marlene Matarese, Youth Involvement Resource Specialist,
Technical Assistance Partnership for Child and Family Mental Health and Trina W. Osher, Coordinator of Policy & Research, Federation of Families for Children’s Mental Health.
Children and youth will make choices and act on them whether they are legally given the right to do so or not. Giving youth the authority to make choices without making sure they have accurate information about all their options and the consequences of each choice is setting them up for conflict with their families and may lead to poor outcomes. Therefore, family members, with the help of professionals when necessary, should do the best we can to give our children and youth the information, skills, and tools they need to make good decisions.
The manner in which anyone is presented with a choice can influence the decision they make. Professionals who talk with youth about their right to share or withhold information from their families have a responsibility to present this option in an impartial way and also to help youth to understand both the risks and the benefits of the choice before them. It should not be a matter of who has the power to make a decision and who does not. It is a matter of sharing the responsibility for insuring that whoever has the final say has the best opportunity to make a good choice.
Involving youth in a meaningful way through education, support, advocacy and decision-making helps them move more successfully into young adulthood. A young person does not generally leap into that transition with a strong skill-set unless they have had opportunities to make educated decisions early on. Families can support youth in this process by listening and by encouraging them to guide their own planning process. No one likes to have decisions made for them. When youth have the ability to “own” their plan, they are more likely to follow it. Youth should have a role on the teams that plan their services. Youth should have a say in who is on their team.
What Youth Can Do
Know that your parents and the professionals working with you are not “out to get you.” They do care about you, your safety and well-being. Sometimes what they think will work for you may be completely different from what you think will help. The goal of everyone at the table is often the same, for you to have a happy and safe life like any other young person. Sometimes that’s hard to remember when discussions are happening about you and decisions are being made for you or without your input. In a good planning process, this should never happen.
Whether you are 5 years old or 22, you should be part of your planning process. This will look different according to your age. Youth at any age should ask questions about every decision that affects their lives. If something is not clear, keep asking questions until you understand everything that is being said about your treatment and other components of your life. Ask about why you are taking any medication, the benefits, the side-effects and any other options for effective treatment that are out there. Ask all the questions you need to so you understand your diagnosis or classification in school and what special services can help you be successful in school.
Prepare for meetings in advance. Talk to your parents, care coordinators, workers and other professionals to find out about what will happen at your meeting. Plan what you want to say and what you want to ask. Make notes so you don’t forget anything important.
Even the smartest adults cannot read your mind. They may not know what you think about the options before you or why you are making certain choices. They may not know what it feels like to have the stigma of a mental illness at school or how it feels to stay in a place without your family. They will never understand this if you don’t explain it to them. Sometimes you have to remind adults that you are a kid or a teenager that wants to live a regular life and it can be frustrating when you feel different. Be sure to have an open mind about other suggestions your family and professionals are making. They often have great ideas that will work too.
Help other youth to become the self-advocates that you are!
What Families Can Do
Work at building and maintaining a strong and trusting relationship with your children so they will seek out and value your views before making decisions. See self-determination as one of the critical tasks of maturing and transitioning into adulthood. See yourself as a guide, mentor, or coach helping your children develop competence and confidence as a decision maker.
Model good advocacy for your children. Start self-advocacy training for your children early by bringing them to meetings where their care is being discussed. Prepare your children for the experience. Make sure that other are also prepared for your children’s participation in the meeting.
Talk with your children about their mental health status. Find out what they know about it, how they feel about it, and what they think would help them. Share information you get from professionals, the Internet, and other families with your children. Explain test results and progress reports to your children. Review fact sheets with them about their condition. Tell them about evidence-based treatments for their condition.
Get professionals to explain to your children the relevant benefits, risks, and side effects of any treatment or service they receive. Encourage your children to ask questions of service providers and insist that professionals answer your children’s questions.
Listen and encourage your children to brainstorm ideas and suggestions for their care. Don’t discourage or criticize their ideas even when you don’t agree. Facilitate a conversation to explore the consequences of all the options. Calmly explain the reasons for your point of view and express your concerns about their decisions.
Keep your own emotions under control.
Posted Friday, December 3, 2004 by Trina W. Osher and Marlene Mat at 01:22 PM
It's important to remember that in order to provide voice and decision making power to a youth, you don't have to leave the family out. Youth do need to learn to make their own decisions. First of all, it's their right. They may not be 18, but it's still their life that is under consideration--not anyone else's. One of the biggest problem with transitioning to adulthood is that when you're 17, you're considered a child. All of a sudden you wake up one day and it's your 18th birthday--now you're an adult. But in reality, it doesn't work that way. On your 18th birthday, you're still the same person as you were the day before, the only thing that changed was the date. Youth need to be making decisions about their life as soon as possible. They also need to know that if they talk about something with a professional, it can stay between the two of them (unless it's something that needs to be reported). I know that parents care and worry about their kids. But when you're dealing with a teenager, they are on the road to adulthood. They are choosing THEIR life path. I still believe in family involvement, however. Family support is often the most stable and reliable support in a person's life. Family is there from the beginning to the end (for those who are fortunate to have a supportive family). I can't imagine how frustrating it would be to try to care for your teen and not be allowed in by the system. I've heard many parents describe the way the've been there for their kids when no one else was. To have a "system" take that away would be a slap in the face. I think there is a balance. Just like with any teen, there are struggles, there are comprimises, there's some pushing and pulling. Raising a teen is never easy. When you throw mental illness into the mix, it gets even harder. I support youth voice and youth-driven treatment. But I also want those parents out there to know that they STILL MATTER. No matter how much your kid pushes you away, they sill need you. Whether they know it or not, they want you too. They're just trying to figure out who they are and where they're going--which is a tough job. Be there when you can, encourage them to grow, and most importantly--hang in there. Posted Tuesday, November 23, 2004 by MG at 01:54 PM
I believe that the youth does need to have his/her own voice and begin the road to independence. At the same time, we must realize that the parents are the ones raising these children. Look at the family situation first and then if it is wise, hear the parents out. They are not yet adults and do need some guidance. At the age of 16, my mom was still telling me what to do and I listened. We began to understand that I do have opinions and the ability to express myself and make wise decisions, but I didn't know everything. I am now 23 years old and I still realize that I do not know everything. I still call my mom and ask her for advice, I probably always will. I understand where these youth are coming from because I don't like being told what to do, either, but at some point we must realize that we can not do everything alone. Also, as I understand from one of the quotes, not all parents are trying to make decisions for their children, they just want to at least know what is going on with their child. Maybe they can not be informed of everything due to HIPAA and other privacy issues, along with the fact that there are that youth won't share if the information will be shared with their families, however, there should be some general information that the parent could provide the parent, to at least give him/her comfort and allow them to still feel important and worthwhile. I sincerely respect a parent who wants to be involved in their child's life because they are greatly affected by this illness, too, and we must remember that. There are different stages that a person goes through in life and we all enter these stages at different points in our lives. As the comment stated earlier, some youth mature faster than others and I believe that it is up to the therapist to realize what the move should be. They know the individual and hopefully have the ability to analyze the parent to some extent, in order to make an educated decision. Posted Tuesday, November 23, 2004 at 12:58 PM
In our family's own experience in dealing with an adolescent in need of mental health services we quickly became frustrated with a system that doesn't seem to do much, (if that is the child's choice)until either the child says they want help or until the justice system is involved. I feel fortunate that some how not only did she servive during this time, but so did we and frankly I have to say that it wasn't due to services but that we had family support.
I agree that the child needs to feel they have some control or choices however until the child is making safe stable choices how can this be an option?
Families try holding everything together from day to day keep this child alive feelings to managing work when schools are calling because they can't deal with it either and to not feel that the "parent voice" is being heard by the community services does not make any of it easy especially when the bottom line is that the parent is still responsible for the actions, behaivor and care for the child. Posted Monday, November 22, 2004 at 10:56 AM
These are very difficult issues for all involved...but it is exciting to know that these challenges are being explored because there IS parent and youth participation/voice at various levels.
I have the gift of hind-sight. By the time my family recieved wrap-around, we had been in crisis for so very long. I had come to believe that it was literally up to me to save my son's life. I had no idea how to relax and let go of my terror...my hyper-vigilence. It took 17 years for me to get there...it wasn't going away overnight. Looking back, I wish a peer parent mentor could have come alongside me to gently help me understand this transition process and the improtance of helping my son feel some control over his situation. By the time he turned 18, he had no decision making skills, no self control, no sense of consequences for his decisions. That was when things were the worst...and he came closest to dying due to self-destructive behaviors.
There are so many variables to the question of parent vs. tranisition age youth voice/participation...age, ability level, safety, amount of support, status of relationship, etc.
I think that for each family...
..this issue should be approached on an individual basis
..there needs to be an understanding of both positions
..both sides need to be approached with sensativity, compassion, and support. Education/training, empowerment, and Peer supports can be invaluable!
In regards to system advocacy...
..there is a need for parent AND youth voice/participation. There are seperate issues, and similar ones as well.
Posted Friday, November 19, 2004 by dawn, parent at 07:41 PM
As parents who want our adolescents to transition into adulthood with all of the same support, and struggles as other young people, the following are the questions I have:
1. As parents, we have legal responsiblities that aren't shared by others providing support or input for planning and care.
2. If we are providing private insurance for our adolescent, there are insurance questions and outcomes that will affect our adolescent's ability to have insurance coverage as an adult, that I don't hear being discussed many places.
3. There is a lot of information available to parents that indicates that "average" young people in transition, won't complete that process until they near 26 years of age. Why would we believe that our children will get there any faster? As other young people transition through college, they don't do it without their parents support, why do others in the "helping professions" not want to equate the process out young people experience as similar. Even when it is our children that are the ones in that college experience?
4. Normal processes of individuating from your parents and family of origin need to be taken into account and seen in the mix of decision making for our young people, like they would for another young person without mental health issues. Posted Friday, November 19, 2004 by Liz Sweet at 08:30 AM
This issue is complicated because there is no black/white distinction. SOme youth mature early, some have no family support anyway-- or even families that drag them down. Some are in foster care and have no choice but to transition rather abrubtly into adulthood with little securing or ongoing support. Some young people succeed largely because of the support from their families. And many youth with mental health disabilities do have real, important differences of opinion about how decisions should be made and which choices are best. Clearly this is not a one-size-fits-all situation where there can be one answer that can guide everyone. I think what we need are better processes for helping young people and their families build common ground, where possible, and figure out how to build on shared interest. Of course, this will not put an end to conflict, but may be helpful in lessening it. Posted Friday, November 19, 2004 at 08:25 AM
As a pre-teen, our adopted daughter was known in the state capital as "the most difficult child to serve in the State of Alaska." Try that on as a parent! Developmentally disabled and a paranoid schizophrenic, Cricket required every service imaginable all of her life. At a large planning meeting when Cricket was in her mid-teens, the topic of birth control was brought up. Crticket was raging to leave school and go live on the streets, which one counselor actually said was Cricket's "right!" I mentioned the possibility of sterilization. The counselor said, "Well, if you want my opinion..." I interrupted, "I don't!" and she actually stopped talking! Cricket was in the state mental hospital around three dozen times, once for a four-year stay; she was incarcerated more times than I can count. For her last four years, she was living with extreme problems in assisted living, with her own full-time awake staff. Our family stayed in constant touch with her, taking her out on passes to eat, go shopping, etc. We visited her frequently and enjoyed many productive visits. Sadly, in mid-September, Cricket (age 33) was up fixing breakfast when she suddenly dropped in her tracks. The emergency room doctor told us that she had either suffered a heart attack, a massive stroke, or an aneurysm. Our four adult children and I were with her in the E.R. when she finally just stopped breathing. Over 100 people attended her very beautiful memorial service, and perhaps two dozen spoke during our time of shared remembrances, including many of Cricket's friends from the differently-abled community. We have been deeply comforted by the condolences of many friends and relatives, and have even received two very touching letters from U.S. senators! Cricket's short life, while very complicated, had far-reaching contacts which will never end. Our time with her involved countless thousands of hours of planning, meetings, frustration, hospitalizations - and deep love and blessing. Posted Thursday, November 18, 2004 by Bev Kirk, Alaskan mom at 09:04 PM
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