Testimony of Patricia Cooper
Senate Committee on Governmental Affairs

Hearing Tuesday, July 15, 2003

Nowhere to Turn: Must Parents Relinquish Custody in Order to Secure Mental Health Service for Their Children? Part 1: Families and Advocates

Madam Chairman and Members of the Committee

Thank you for providing me with this opportunity to testify at this hearing about the long struggle that my family has endured in attempting to secure appropriate mental health services for my son. My name is Patricia Cooper - my step son's name is Dakota. We live in Fayetteville, Arkansas.

I am also appearing today on behalf of NAMI - the National Alliance for the Mentally Ill - and NAMI will be submitting a written statement for the record. Despite appearing on behalf of NAMI - this is my personal story about what my family has gone through.

Our son, Dakota, came to live with me and my husband John - his biological father -- in 1997. John has full custody of Dakota. He is a wonderful boy with big bright blue eyes and blonde hair. Dakota loves sunsets and always insists that we stop to enjoy them. He also loves everyone around him. Friday is Dakota's birthday - he will be 12 years old.

Dakota suffers from multiple mental illnesses - including attention deficit-hyperactivity disorder, reactive attachment disorder, left hemisphere processing deficits, oppositional defiant disorder, and post traumatic stress disorder. The symptoms of these illnesses cause Dakota to act out in extreme ways - including attempts to start fires, using knives in a dangerous and sometimes threatening way, running out of school into busy intersections and sometimes hurting the dog. He cannot be left unsupervised -- anywhere or at any time. Despite these challenges, John and I love our son and we know that his actions are the result of his struggles with his mental illnesses. It is not because Dakota is a "bad kid."

Our journey began in 1997, when the school noticed that Dakota was really struggling. The principal informed us that he thought that Dakota needed immediate help. We were not surprised because of Dakota's behavioral struggles at home. Although we wanted to keep him in our home, it was clear to us that he could not continue to safely reside there without appropriate support and services to address his mental health needs. Unfortunately, our private insurance did not cover the home and community based mental health services that we needed for Dakota. Our policy included caps and restrictions on mental health coverage and fell far short of the intensive services that Dakota needed. Our income level does not qualify us for Medicaid because both John and I work.

At that time, we decided that our only option was to place Dakota in a residential treatment center. He did ok with the placement - which renewed our hope and he returned home.
Things did not go well with Dakota at home - the truth is that our family was falling apart. We needed help. We called the Department of Human Services and they informed us that there were no services for Dakota and our family. Over time, they suggested that, given the seriousness of Dakota's mental illnesses, we consider giving up custody of him to the state to secure the level of services that he needs. Over the past few years, we have heard that many times. We refused to consider that option. We love Dakota and we are not about to give up on him.

In late 1999, a school-based therapist told us about a TEFRA Medicaid option (also known as the Katie Beckett option) that could help fund the intensive home and community based services that Dakota needed. Dakota also spent time in multiple residential treatment centers. Unfortunately, not all of those placements went well - and after one stay, we were told that we would need to take Dakota home, with virtually no appropriate home and community based mental health services. We expressed grave concerns that without the appropriate treatment and supports - Dakota would suffer serious setbacks and his illnesses would worsen. It was then that we were told that Dakota would be placed in therapeutic foster care through a voluntary placement agreement. He was placed with a family that lived 4 hours from our home for 11 months. The state used an abuse and neglect proceeding to place Dakota in foster care. John and I were treated by the foster care system as parents who had abused and neglected our son. It was painful and humiliating.

During the past year, Dakota has resided in residential treatment facilities in 3 states -- Oklahoma, Colorado and Arkansas. We only wish that appropriate home and community based mental health services existed for Dakota and our family and were adequately funded. We want Dakota home with us - the people who love him most. We also wish that other families did not have to endure the long battle that we did to secure mental health services and the toll that it has taken on our family.

I want to thank Senator Collins for her leadership in addressing the tragedy that far too many families in our nation face in struggling to secure mental health services for their children. Thank you again for this opportunity to speak with you this morning. I am happy to respond to any questions that you may have.