Statement of Linda Chamption of Montogomery, Alabama on behalf of National Alliance on Mental Illness (NAMI) on Children's Mental Health
Before the Subcommittee on Substance Abuse and Mental Health Services, Committee on Health, Education, Labor and Pensions and the United States Senate.
April 28, 2004
Chairman DeWine, Senator Kennedy, and members of the Subcommittee, I am Linda Champion of Montgomery, Alabama. Since 2000, I have been a member of NAMI Alabama working as a child advocate. I am also a Vice President of Alabama Family Ties, an advocacy group that collaborates with NAMI Alabama to provide support and education to parents and other caregivers of children and adolescents with mental illnesses. I am, first and foremost, the mother of a 17-year-old son who has struggled with mental illness since the age of seven. It is from the perspective of both a mother and child advocate that I am honored to come before you today to provide testimony on the current state of the children’s mental health system in Alabama and in most communities cross our nation.
NAMI is the nation's largest grassroots advocacy organization, with 220,000 members representing children and adults with mental illnesses and their families. Through NAMI’s 1,200 chapters and affiliates in all 50 states, we provide support, education, outreach, advocacy and research on behalf of persons living with mental illnesses.
So often I have listened to families pour out their heartfelt stories of failed attempts to access mental health services for their child in a system that is fragmented, overly bureaucratic and not at all family friendly. The system fails to offer support, adequate information and resources to parents and caregivers of children with mental illnesses. The opening statement in Surgeon General Satcher’s Report on Children’s Mental Health really says it all – "the burden of suffering experienced by children with mental health needs and their families has created a health crisis in this country." For families of children with mental illnesses, this is, quite frankly, an understatement. Our family’s experience is right in line with the finding of the President’s New Freedom Commission that our nation’s mental health system is in shambles -- with no defined or coherent system at all. This forces parents and caregivers of children with mental illnesses to navigate through the quagmire of a fragmented, overly bureaucratic and family unfriendly system.
Lee is my chosen child. He came to our family as a happy, rather precocious, very resilient three-year-old. Blonde hair, blue eyes, a blush of freckles across his nose, he was the quintessential angelic child. A daredevil at risk taking activities one moment only to collapse into a solemn empty eyed toddler the next – I was immediately concerned that this shift in behavior without any consistency was unusual. Lee excelled in pre-school by capturing the attention of every teacher with his impeccable manners, angelic good looks, and eager-to-please personality. Kindergarten and first grade, however, proved to be another matter and rather challenging for Lee and our family. Lee began to struggle, finding it hard to focus on any activity for a prolonged period of time and not being able to sit in his seat. Understandably, this caused problems with his teachers and also his classmates. Socialization with his peers proved extremely difficult for Lee -- with his "me first" nature and low frustration level. With the help of a kind and concerned teacher, a recommendation was made to see a pediatrician for an assessment for ADHD (Attention Deficit Hyperactivity Disorder). Lee was not overtly bad or disruptive – he just could not sit still and focus. Despite those challenges, he excelled in school – I am still amazed at his ability to learn in those early years when he failed to show an interest in participating in classroom activities and in study circles.
Our Early Years
Lee was diagnosed with ADHD by our local pediatrician at age 7, and began a medication regime three times a day. No alternative choices were offered -- medication was deemed necessary and ordered – end of discussion. Our pediatrician made the diagnosis strictly from a teacher’s written statement, observations made in a 15-minute office visit, and with very little questioning of me about his symptoms. We failed to receive any information about either his illness or the medication, nor did we receive information about local support organizations for our family -- just a prescription and a return visit scheduled in one month. I truly thought this medication was the answer. Lee took medication on school days, then progressed to weekends and holidays, finally to encompass the entire calendar year.
Three years into the diagnosis, the pediatrician suggested counseling in an effort to achieve better social skills for Lee. Living in a small rural community, and at least fifty miles from an urban setting, our bi-weekly mechas to the psychologist began. In an effort to minimize time Lee spent away from the classroom, I attempted to access counseling services from the school system. The school refused to provide counseling services and told me that Lee did not meet the criteria for those services because he was not failing any subject nor did he have any disciplinary actions on his school record. Our bi-weekly 50+ mile treks to the counselor continued. The counseling did not prove effective for Lee and did little to calm my growing concern for his future.
The Downward Spiral
Always an A student, Lee did well in the public school setting until the end of 5th grade – when the bottom fell out and our family embarked on a long downward spiral. Lee gradually began to exhibit more aggressive and attention seeking behavior -- including stealing lunch money for no reason, lying to his teachers, pushing and fighting with other students, and showing disrespect toward authority figures. Lee’s behavior rapidly deteriorated with dramatic mood and behavioral changes – cycling up and down -- to the point of requiring immediate acute care. Placing Lee in an acute care hospital at the age of 10 was the hardest thing I have ever had to do in my life. However, as I look back, it is clear that it was the right choice to make at that point in his life. I poured through every book I could get my hands on and exhaustively searched the Internet to understand my son’s behavior, ADHD and treatment options. At that time, we had a psychosocial educational evaluation that recommended an assessment by a language and speech therapist and a sensory integration assessment. Unfortunately, living in a small rural county did not afford us the luxury of having those specialists close by – an assessment required a trip of least 2 hours to access those services.
When Lee was discharged from the hospital, Lee’s behavior became even more erratic and new mediations were prescribed. Raging for hours became the norm for Lee around our house and we drew inward away from our other family and friends. Finally our child psychiatrist recommended that Lee be placed in a residential treatment facility. Unfortunately, he could not provide us with information on the location of these facilities or the treatment options that would be available there for Lee. We were forced to investigate this on our own. Ultimately, our insurance case manager informed us about three facilities that were available and we visited all of them. We chose the one that was closest to our home – a one and a half- hour drive. I was naïve then and believed that Lee would respond quickly to treatment and behavior modification and be home with us again by the start of his 6th grade school year. Boy was I wrong. Eighteen months after entering the residential treatment facility, Lee was sent home and we were notified that "the treatment option was not satisfactorily meeting the needs of the child." Lee was sent home without medications and without a treatment plan – we were simply told to follow up with a licensed family counselor.
Three months later we were right back where we started nearly two years earlier - only this time the stakes were higher and Lee’s behavior was extraordinarily difficult. Lee was clearly struggling. He insisted on lying about anything and almost everything, he regularly had screaming fits about the slightest things, including the consistency of the toothpaste. He also became physically abusive toward us. Our family was under siege – without support or appropriate services. We became even more disconnected from our family and friends – we had no social life or connection to the community. We rarely accepted invitations or had friends over for fear that Lee would engage in extreme behaviors or act out in a way that would further alienate us. It placed enormous strain on our marriage and we felt like failures as parents. Yet we loved Lee, we understood that he was struggling with the symptoms of an illness and we were not about to give up on him.
Nothing was working for this child and we felt that time was running out.
Another placement was imminent for Lee and after working with our insurer – again our mental health professional could not recommend a placement for him -- we were forced to seek services for him out of state at a private psychiatric hospital. Again Lee’s medication changed – he was placed on multiple medications. It did not take long for us to exhaust our life time private insurance mental health benefits. Two months later and out of insurance and without the financial resources to pay out of pocket for Lee’s treatment -- we were forced to turn to the child welfare system to seek mental health services for Lee. This proved to be an extremely difficult experience. We were forced to go to court to seek an order placing Lee into the custody of the child welfare system to secure mental health services. At the time, we had no money, no resources and little support.
Ultimately, we found a wilderness program in Alabama that was recommended to us and we moved Lee there. Some of the facilities that were recommended to us for the treatment of Lee’s illness included youth detention facilities that we were told had some therapeutic components. Imagine our shock to find out that they were actually youth lock up facilities -- complete with razor wire and guards. This hardly seemed like an appropriate way to address the mental health treatment needs of a young man.
Sadly, Lee’s condition continued to deteriorate so that a more secure setting was necessary and we moved him to a psychiatric hospital in Birmingham that had both acute and long-term therapeutic care. More advanced brain testing and a change in medication proved to be a turnaround for Lee’s treatment. Fortunately, today more is known about frontal lobe disparities and their accompanying disorders. While it does not provide a cure, it does provide an explanation for some of Lee’s behaviors.
Ultimately, we found a NAMI support group and attended a Family-to-Family 12-week session for family members of people living with mental illnesses. Although the course is designed for family members of adult mental health consumers, it gave my husband and I a better understanding about mental illnesses and the role of family members.
I am happy to report that Lee currently attends a private school in North Alabama – appropriately named Hope Academy. More importantly, he is back in our custody after a 2-year placement in the custody of the child welfare system. This came about because of a change in my husband’s insurance coverage that now provides full mental health parity. It has been quite a 4-year journey for Lee and our family.
What I have described here is a brief history of just one family. A family that was fortunate enough to have two educated highly driven and motivated parents who refused to take no for an answer. Still, we faced monumental challenges. We faced a system that had services fragmented over several child-serving agencies with, historically, no real financial or systemic incentives to collaborate or form partnerships to serve the needs of children and adolescents with mental illnesses and their families.
Each of the child serving agencies in Alabama has a specific mission in its own right. The fragmentation exists because the child-serving agencies – education, mental health, child welfare and juvenile justice -- do not have a shared mission, do not speak the same language, do not engage in joint strategic planning and often do not collaborate about how to serve the mental health needs of children. Each agency also competes for limited budget dollars – and often have no incentive to blend those funds to serve children with mental illnesses and their families.
There is, however, one overriding common denominator – children with mental health service needs exist in each of these agencies or systems. Families, like ours, all too often discover that once the need for mental health services is mentioned, these agencies claim that the responsibility for treatment belongs to one of the other agencies. While there exists a mechanism under Alabama law, and perhaps under the laws of other states, for a collaborative approach to treatment – in Alabama it is call a Multiple Needs program – there is a breakdown in the implementation of the program. We simply must fix these systemic failures so that families with children with mental health service needs do not encounter the struggle that our family did in attempting to secure much needed services.
On a hopeful note, just this past week NAMI Alabama, Alabama Family Ties and others in the state concerned with the well-being of children, organized and held the first-ever statewide collaborative meeting between all of the child-serving agencies and family advocates to address the crisis in the children’s mental health treatment system. Administrators and Senior representatives from all of the child-serving agencies attended, along with representatives from the Governor’s Office, the Juvenile Courts and the Alabama Legislature. There was general agreement that a formal strategic plan for children’s mental heath services, on a statewide basis, needed to be adopted and that the various child-serving agencies would work together to develop a shared mission and a shared plan.
A Call for Reform
As a parent who has experienced a tremendous struggle attempting to secure appropriate mental health services for my son over many years, and as a child advocate who talks with many families in the state of Alabama about their struggles to secure mental health services for their child – I have the following suggestions on actions that should be taken to help improve services for children with mental illnesses and their families:
- End the Discriminatory Caps on Private Insurance Coverage For Mental Health Services – our family was forced to give up custody of our son because we quickly exhausted our lifetime private health insurance benefits to provide the treatment that he desperately needed for his mental illness. The discriminatory and restrictive caps on mental health coverage in our insurance plan caused an enormous hardship for our family. The time is long overdue to enact a federal mental health parity law that puts an end to the fundamentally unfair and restrictive health insurance coverage that exists for millions of Americans who live with mental illnesses -- please support S. 486/H.R. 953;
- End the Practice of Forcing Families to Give Up Custody of their Child to Access Mental Health Services – please support the Keeping Families Together Act, a bill that would provide grants to the states to help end the tragic practice of forcing families – like mine -- to give up custody of their child to secure mental health services (S. 1704/H.R. 3243). Also, states should be encouraged to take advantage of Medicaid expansion options – like the Home and Community-based Waiver and TEFRA/Katie Beckett options that can provide funding for home and community based mental health services. This will require technical assistance from the Center for Medicare and Medicaid Services (CMS) to help states better understand these options;
- Encourage States to Develop Effective Interagency Collaboration and Partnerships Between All Child-Serving Agencies and With Families -- States should be encouraged to develop effective interagency collaboration and partnerships between child-serving agencies to begin to address the fragmentation that acts as a barrier to families securing mental health services for their child. Service systems must become more family friendly because parents and caregivers often do not know how to navigate through the maze of child-serving agencies. Families should be equal partners and involved in all activities related to reforming the children’s mental health system. The failure to involve families will lead to the development of systems that do not address their needs;
- Train and Educate all Child Serving Professionals About the Early Warning Signs of Mental Illnesses in Children -- All child-serving professionals, especially school professionals and those working in child welfare and juvenile justice, should be trained to recognize the early warning signs of mental health related concerns in children. When the signs are present, a child should be referred for an appropriate mental health evaluation and for appropriate treatment;
- Build an Effective Children’s Mental Health Treatment System – Alabama and every other state must invest in building an effective children’s mental health treatment system that provides the full array of services for children and families. This includes home and community-based services, school-based services, respite services and more. We learned first hand about the critical shortage of qualified children’s mental health providers and the lack of appropriate services. Our nation needs to address the critical shortage of children’s mental health professionals and the lack of appropriate services, especially in rural communities;
- Parents Need to be Provided with Appropriate Information About Their Child’s Diagnosis and Treatment – we often felt left in the dark about Lee’s diagnosis and the treatment options that we available to us. Much of what we learned; we had to learn on our own, which placed an enormous burden on us at the same time that we were attempting to meet the intense health care needs of our son.
The good news is that the scientific community has made great strides in understanding childhood mental illnesses and treatment works for many children, if you can get it. Of course, we deeply regret that it took so long to secure appropriate services for Lee and we regret all that he missed out on along the way – youth sports, dating, scouting and other "normal child" activities. Our family hopes that critically important hearings like this one will lead to real and effective reforms so that other families do not experience the years of struggles that we did.
Mr. Chairman, my dream is that the United States Senate and House of Representatives will realize the precious treasure we have in our nation’s children. We can only help them reach their full potential if we can ensure that children who suffer from mental illnesses receive appropriate treatment and services. The health care needs of these children should be made a national priority just as we have done for children with juvenile diabetes, arthritis, cancer and other childhood diseases.
You, and your colleagues, are in a unique position to truly impact the quality of the lives of our children. Access to services for our children in many cases is directly tied to money. Passage of the Mental Health Parity legislation, now pending in the Senate, would go a long way towards helping relieve some of the problems our children now face. Other legislation such as the Keeping Families Together Act will also provide a framework within which we can help families retain custody of their children at the same time they have mental health services made available to them.
I want to thank you for this opportunity to present one parent’s story. I trust that in some small way I have raised some questions in your mind about what we can do to help our children. They are our future – we owe them a chance to succeed.
To learn more about child and adolescent mental health issues and what NAMI is doing to improve the system, visit NAMI's Child and Adolescent Action Center website at www.nami.org/caac