Tag Archives: parent

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

November 11th, 2014

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

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

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

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

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

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

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

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

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

No one seems to be responsible.

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

 

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Special Education Advocacy

September 5th, 2012

Special education advocacy has evolved from a voluntary practice by which parents support and advise each other, without the expectation of personal gain, to a highly lucrative service.  Unlike other types of personal services, it is not regulated by the State. 

Parents may not know it, but special education advocacy has become a very profitable business.  There are hundreds of advocates in Massachusetts. Some advocates charge rates as high as $100-$120/hour. Some advocates charge for every contact with the client- email, phone, in person- and they charge by the minute. There are advocates who net $115,000 or more annually. That’s substantial revenue for a service that has no entry requirements and is completely unregulated. Anyone may open a practice as a ‘special education advocate’; there are no educational, training, competency, or licensing requirements.

The purpose of regulation is to protect consumers from wasting money or receiving poor service from unqualified service providers.  Regulation includes educational or training requirements and licensing, which may include exams to prove competency.    Until this type of service is regulated, my advice to parents is to practice certain measures to keep the advocates accountable.

Special education advocacy should be regulated. Clients should be assured of receiving quality service from well-educated, experienced professionals, who have passed examinations to demonstrate competency. Advocates should be required to adhere to ethical guidelines, standards or practice, regulations, and educational requirements. There is a voluntary association of advocates called SPAN: Special Education Advocacy Network. SPAN has published on their website a list of ethical standards, however membership in SPAN is not mandatory.

The State regulates at least 30 categories of service providers including hairdressers, manicurists and aestheticians.  Advocates have the potential to cause more serious harm to clients and their services can be much more expensive. An advocate’s poor judgment or work product could cause a school district to deny services to a child or could waste the client’s money.  Clients rely on advocates to do high quality work, however some advocates make careless mistakes, such as failing to document important conversations.

An implication of the absence of regulation is lack of standardization of training. The training that advocates receive is variable. Some advocates participate in the week-long, optional Parent Advocate training provided by the Federation of Children with Special Needs. Graduates of the course may opt to perform an additional 50 hours of volunteer work; for the combination of the course and volunteer work, they receive a certificate.

Some advocates do work which bears similarity to the work of attorneys, such as giving legal advice and participating in hearings. However, attorneys study law for three years, and pass rigorous bar exams.  The participant in a week-long course cannot possibly obtain that competency in law; advising clients about legal issues requires skills in legal analysis and reasoning that are taught in law school.

Attorneys are also bound to the rules of Professional Responsibility. During one of the summers when I was a law student, I worked for the Supreme Court of Pennsylvania in the office that investigates claims of professional misconduct.  Lawyers who produced poor quality work or who violated the Rules of Professional Responsibility work faced disciplinary proceedings and serious consequences, including disbarment.  There should be licensing exams for advocates and a State agency that would hold advocates’ work to high standards.

This blog entry does not apply to the work of any particular advocate.  The advocates whom I know personally, produce fine work. As a former attorney, I cannot help but wonder what recourse a client would have if her advocate were to make errors of judgment that might have been prevented through appropriate training, or if the advocate were dishonest.

As long as the practice of special education advocacy continues to be unregulated, some advocates could be tempted to act in ways that would cause them to lose their professional licenses if they were attorneys, such as misrepresentation of their expertise or unfair or dishonest practices. 

My advice to the consumer is to keep their advocate accountable and to have a cap on spending, determined at the outset in order to evaluate whether the advocacy is effective, before too many hours have been billed. Consumers should request documentation of advocates’ conversations. Be aware that there is no correlation between the professional rates charged and the qualifications of the advocate.

I am interested in hearing from you: has anyone had an experience with an advocate which might have had a different outcome, if the advocate had passed a licensing exam?

Our guest blogger, Rachael Wurtman, is in private practice as an Mental Health and Autism Spectrum Advocate, who advises parents about and advocates for  interventions and services, at schools and in the community. She finds pediatric mental illness and autism spectrum disorder fascinating and is constantly learning as much as she can. She is trained in law and in child development and has chosen to give up the practice of law.  Visit her web site here.

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Remembering Yolanda

May 11th, 2012

For countless reasons, May has been and still is my favorite month of the year. It’s filled with dance recitals, school plays, field trips, field days, lilacs, graduations, May day walks and Maypoles. With longer, warmer days we also enjoy baseball games, ice cream trucks, bikes, pogo sticks, swingsets,  hopscotch and marching in or watching memorial day parades.  They are all great things that speak of May to me.

School is coming to an end and then there are the “firsts” of the year. First communions, first trips to the beach, first swim, picnic and cookout.  They all happen in May and remind me of new beginnings, happiness, pleasures and the hope that there is so much more to come.

My May memories are filled with commencements, summer jobs, weddings, vacations and my youngest daughter’s birthday on May 12. Often it would fall on the same day as Mother’s Day. This youngest of my three girls, from her first recognized day, celebrated in a very BIG way. There was her third birthday when everyone gave her the LARGE bag of Lays potato chips because it was the only thing she asked for, and made her the “happiest girl in the world.” Then there was the third grade birthday party where, despite the fact that we wrote out invitations for her entire class, she extended verbal invitations to the entire school (kindergarten to fifth grade) and many of these invitees showed up as well. I also remember her sweet sixteen pool party where all the boys brought her roses.  There were so many that the last boys to arrive gave them to me!  My May baby added to my list of all the reasons I love this month.

As the years went on, our family also celebrated Children’s Mental Health Month in many different ways. We did NAMI Walks together, attended legislative breakfasts, went on advocacy trips to the State House. 

My May baby, along with her two sisters, sometimes suffered from mental health demons.  However, she always had a special empathy for others with struggles like her own.  As I worked as a family supporter, even before her diagnosis, she would often ask me to speak to a schoolmate’s parent because, as she said, “They don’t know how to do it.”  The “it” usually meant to advocate at the school level.

This May we will celebrate our daughter’s 21st birthday.  It seems impossible but she will not be here to celebrate with us.  My baby, the child of so many talents and strengths, with physical and spiritual beauty and emotional challenges that sometimes tore at my heart (and other times frustrated me more than I imagined any child could) took her life four years ago.  It was just months before her 17th birthday.

I wanted to write this blog for several reasons.  The first and most primary is to honor Yolanda.  As her parents, we think about her, laugh at fond remembrances and painfully miss her every day.  I don’t think that will ever change.  But we have faced the unimaginable and learned much.  I know my daughter would want me to speak to others in her name.

In many ways, we have come so far in the past 20 years in children’s mental health.  Early diagnosis, treatment, appropriate interventions and a growing recognition by schools of mental health challenges have all improved.  Yet, not all children and families benefit from these improvements and many children are still “pushed through” from  grade to grade.  While some people are leading the charge in their part of the system, there are still children and families who do not get what they need and are not treated with understanding and respect. Through the CBHI initiative, the state has put in place pioneering efforts to try to rectify some of these problems.  In many cases, some things are improved and children and families are doing better.  But, despite all these efforts, other kids are “still stuck.”

We have come so far, yet there is still so much more to do!  I ask you today, for all of us and our children, to continue to challenge the barriers and work to take them down.  In whatever way you can, be aware of how much impact your voice and presence make.  A little righteous indignation can go a long way and can bring about improvement and change. It may well be the most exhausting work you will do or have ever done.  It is not often applauded.  We don’t get the big bucks, accolades or the recognition of a job well done.

We are fueled by passion and hope that tomorrow can be better for our own children and the others that follow.  With HOPE that they can attend school in an environment where they feel safe and happy.  With HOPE that they can have friends, enjoy play and be respected.  With HOPE that they can do the best they are able to do and get the help they need to do it.  And with HOPE that not one more child has a week, a day or a minute where they cannot imagine living another moment.

I HOPE for many merry, merry months of May for us all.

Mary Ann Tufts is our guest blogger.  She is a fierce advocate, a wonderful mother and a strong voice for children’s mental health.  The Children’s Mental Health Law was named after her daughter Yolanda.

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Have a little faith

March 12th, 2012

When my son was in elementary school, we decided to go back to church.  We had belonged to a church when he and his brother were very small.  I taught Sunday school, mostly for preschoolers, so I could keep an eye on him.  We were part of a small but vibrant church community and we valued that.  Then he took a nosedive into a series of mental health crises.  Getting anywhere was a challenge and church fell by the wayside.

We moved back to Massachusetts and decided to try church again.  We asked around and chose a church with a reputation for being welcoming and accepting.  My sons began Sunday school and I looked forward to an hour each week when I could be part of a supportive community.  It went pretty well the first week.  By the third week, the Sunday school teachers were coming to find me and ask if I could come help them.  My son had a hard time sitting still, they said, or focusing.  He seemed extremely fearful some of the time and “wired” at other times.  They simply had no idea what to do and felt pretty frustrated with him when their strategies didn’t work.  Welcome to my world, I thought to myself.  We lasted only a few weeks longer. 

A study published in June 2011 by Baylor University examined the relationship between mental illness and family stressors, strengths and faith practices among nearly 5,900 adults in 24 churches.   The study found that mental illness in a family member can destroy the family’s connection with their religious community and many affected families leave the church and their faith behind. The results found that 27 percent had mental illness in their families, with those families reporting double the number of stressors, such as financial strain and problems balancing work and family.  In addition, those families said support and assistance was very important to them, while their congregations seemed to overlook this need entirely.

I have continued to hear stories from families about the disconnect between what they hope for from their churches, synagogues and other faith communities and what they actually receive.  Some have been advised to discipline more, to love more, to seek a therapist (most already have) and to be patient.  Many are told that “God doesn’t give us more than we can handle.” Most parents, however, are not looking for advice.  They are looking for support, acceptance and a place to belong. 

A few years after I had stopped attending church with my sons, I was running a support group for parents like me.  While some had managed to stay connected with their religion, many more had had negative experiences.  One mom came week after week and described how she was trying to get her daughter confirmed (they attended Catholic church) and how it was very important to her.  She had made a hurculean effort to bring her daughter to class consistently.  She had coached her, steadied her and intervened for her.  At the end of the confirmation classes, her daughter was required to attend a weekend retreat.  The church staff said they absolutely could not oversee or administer medication and she knew her daughter couldn’t go without her meds.  At first, they wouldn’t allow her to drive out with the medications and all seemed lost.  She pushed, she insisted and ultimately was allowed to drive out each morning and evening to bring the medications.  Her daughter made it through the weekend and successfully completed the retreat.  But she had to fight to make that happen.

We’ve made strides in ensuring that children and youth with mental health needs are included in school activites and community events.  Parents find the one cub scout pack that welcomes boys with ADHD or the only pottery class that is fine with anxious girls.  However, many simply walk away from the religious community they grew up in when they find their children are not accepted and they feel judged as parents. 

Parents whose children have mental health needs want and deserve supporting, accepting and welcoming religious communities.  Here in Massachusetts, we have made a committment to providing treatment and services in the community whenever possible.  We encourage wraparound teams to identify and seek out natural supports and churches, synagogues and mosques are often used as examples.  But most places of worship need training and education for their staff and volunteers, who often hold the same stereotypes as others who don’t have a family member with mental health needs. With a better understanding of how they can help and concrete steps to make it possible for families to be part of a faith community, the connections can be strengthened and renewed.

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Gotta laugh

February 5th, 2012

Bill Cosby once said, “Through humor, you can soften some of the worst blows that life delivers. And once you find laughter, no matter how painful your situation might be, you can survive it.” Humor has been used to survive serious illnesses and live through terrible situations. Although it’s not one of the first things we talk about, most parents use humor to cope with the day to day chaos of parenting a child with mental health needs.

Survivors of similar experiences can often recognize each other.  When you and another parent find something hilarious that others don’t, there’s a strong chance you’ve both lived through something much the same.  You both are struck by the absurdity of the situation, understanding that no one else  would believe it, unless they had also lived through it.

When our sons were younger, a friend and I used to share stories and commiserate.  We would often remark, “I can’t believe he was so stupid!”  One time my son took a note that a classmate had written about him that he didn’t want any one else to see.  After school, he ducked into an alley in the town center, pulled out a lighter and set it on fire.  Of course, a police officer walked by at that moment and he was given a warning.  When we talked later, he told me he HAD to burn it, not rip or toss it and it had to be immediately.  It didn’t occur to him not to set a fire in the town center.  I called my friend and moaned, “I can’t believe he was so stupid.” A few days later she had a story to top mine.  We ended up buying the URL for mychildisstupid.com, although we never ended up using it.  No doubt there would have been some hysterical stories that topped either of ours!

We laugh about our children for a lot of different reasons.  Sometimes, it’s because they are so darned funny. Sometimes it’s because they have such a hard time seeing the humor in life.  Sometimes it’s because we can’t believe it, are gobsmacked by what happened or we can’t think of what else to do.  So we laugh.

Research tells us that laughter is a wonderful thing.  It boosts the immune system, releases endorphins and protects the heart.  But most of us don’t laugh to increase our health.  Raising a child with mental health needs is a roller coaster ride.  There are good days and bad days.  There are times that exhaust us, frighten us, frustrate us, anger us and sadden us.  There are times that gladden us and encourage us as well. There are times when we feel incredibly lonely.

Humor is a way to share the experience.  Humor can bring you closer to one another and confirm the comraderie of people who have been through the worst and lived to laugh about it.  It creates a new language to share your experience that is free of labels, acronyms and pathology.  It can be dark or droll, sarcastic or dry and express the variations of our lived experience.

Years ago, when I ran a support group, the mom of a nine year old boy used to attend regularly.  Her son was alternately despondent and manic and they had not yet found much that helped him.  Sometimes he saw things that weren’t really there.  Through it all, though, she would tell stories of their week in a way that made all of us laugh.  We were empathising with her and rooting for her each step of the way.  One week, she came to the group and told us that the day before her son had run to her.  “A stranger got in the house,” he said.  “How do you know?” she asked him.  He thought a moment and told her, “I was just in your room and there’s a strange man jumping up and down on the bed.”  “Honey,” she replied, “I should be so lucky.”

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