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|November 4, 2005
Out Of Sight, Out Of Mind
by Katy Parrish, insurgent49
According to the State of Alaska Department of Health and Social Services, 749 of Alaska’s children and young adults were residing in out-of-state residential treatment centers for severe mental health and behavioral issues at the end of the 2004 fiscal year.
Alaska does not have any centers specializing in long-term therapeutic behavioral services. Since 1998, the Medicaid expenditures to “serve” these youth out of state have increased from $5.4 million to over $49 million per year. This means the average Medicaid expenditures for one youth in out-of-state, residential care totaled over $65,000 for 2004. In 2004, the average number of months each youth spent in one of these centers according to the aggregated number of bed days is 6 months. However, this report does not tell you how many of these youth end up outside Alaska for extensive periods.
Who are these youth? A majority of them are between the ages of 13 and 17. Over half are male and most are from Anchorage. Looking at ethnicity, most of these youth are Caucasian, and the next highest group is Alaska Native. However, one fact not mentioned in the Department of Health and Social Services report on baseline data for fiscal years 1998-2004 is how many of these children experience developmental disabilities.
DS, whose name is being withheld to protect the privacy of the child and the mother who agreed to share this story, is 11. He was at a treatment center in the South when I began writing this story.
DS doesn’t know why he was sent there. He didn’t want to be there. He was admitted to this “achievement center” on June 29, 2005 after a local organization provided “services” to him for three months and referred him there for more “treatment.” All he wanted was to come home. One of the kids at Five Oaks told him the only way he would get to go home was if his mother went to court.
Now that he is home and able to talk to his mother without staff monitoring his two phone calls a week, it turns out that other children at the facility threatened to sexually molest him when he fell asleep. No wonder the teacher at Five Oaks reported to his mother on her quarterly visit that DS was sleeping during the day while he was in school. His mother reports that he is afraid and won’t let her out of his sight. I got to meet DS today, and he reported that the staff at Five Oaks was mean and he would be punished for little things like not eating all of his dinner.
DS has always exhibited interesting behavior. He is easily distracted, reacts to certain sounds as if it hurts his ears, can only go to sleep under his bed, doesn’t like change in his routine, will only eat certain foods and has never been interested in socializing with his peers. He has a hard time processing language and has needed speech therapy since he was in preschool. His primary diagnosis prior to admission to North Star was Pervasive Developmental Disorder – the umbrella diagnosis for autism spectrum disorders.
When DS started fourth grade, he began having a lot of problems at school. Other children thought he was weird and would bully him relentlessly. He reacted by having tantrums and being “non compliant.” Like most parents caring for children experiencing developmental disabilities, his mother did not know about community support services for her son or his rights according to the Individuals with Disabilities Education Act. Instead of implementing positive behavioral supports as required by the law, the school recommended a change of placement to Whaley Center.
Whaley operates segregated programs for children experiencing autism and severe emotional disorders. There are padded rooms and security guards. Many of the parents I have supported report being unhappy with the program because their child’s behavior becomes worse. According to the Anchorage School District Performance Report, Whaley runs on a $1.4 million budget, serves approximately 350 students. As of last year, most students were scoring far below the average on the various standardized measures used throughout the third to ninth grades.
In this setting, DS continued to experience behavioral issues. His mother, in an effort to be supportive, sought services from a local doctor of osteopathy specializing in severe behavioral disorders. He prescribed Thorizine, which is often used for schizophrenia and extreme pediatric hyperactivity, and Depakote, used to treat Bipolar Affective and seizure disorders. DS was 10 at the time. He began hallucinating and having more severe tantrums which resulted in him hurting is mother. Having four other children and a grandchild living at home, she turned to a local organization, which eventually referred her to an outside facility.
This mother called the agency I work for, Stone Soup Group, a week before she was to go down for her first quarterly visit. Medicaid will only pay for one visit per quarter for one parent to visit. She was very worried she wouldn’t be able to see the psychiatrist that had completed the assessment upon his arrival. I suggested she call the center and say, “When can I speak with his doctor?” Not, “Can I speak with his doctor?” She was also worried because the center was using inaccurate family history reports from his unsuccessful Alaskan treatment to plan for his new treatment, and she was having difficulties getting copies of his records from the facility. I suggested she demand to see the chart and get copies before her departure.
The morning after her return to Alaska, she came to my office in tears. She related a story of a staff that ignored her requests to copy records and minimized her participation in her son’s treatment. I asked her what she wanted. She adamantly replied, “I want him to come home.” Being focused on family centered care, I said, “Okay, but we will have to begin to set up community-based support services before I approach Medicaid to fly him home.”
I asked his mother to contact the neighborhood school, pediatrician and local community mental health agencies to set up services. I explained that we would need a current evaluation from the school to begin the eligibility process for developmental disability services. It was then I found out that another developmental disability service provider based in Anchorage had failed to initiate this eligibility process prior to the child’s referral for out-of-state services. I gave her some simple ideas to help with the sensory challenges DS has and encouraged her to keep asking questions and using her heart to guide her. I emphasized that she knew DS best and to believe she was the expert for her child.
My immediate task was to retrieve records from his current treatment facility. After faxing a release of information to the center, I followed up with a phone call to the office. Despite the fact that I called during office hours, no one answered the phone. In order to verify receipt of the release, I called the alternate number given on the answering machine. I ended up talking to a staff member who would not fully identify herself and would not disclose her supervisor’s name. After asking her three times, “Do I have to call Medicaid to report this?” she reluctantly gave me his name. Red flag number one.
After speaking briefly with the supervisor, he said that the office staff was out running errands and that they would deal with me in the morning and hung up. Red flag number two.
The next morning the facility’s executive director called me. I asked if he received the release of information and shared the mother’s concerns. He didn’t answer any questions directly and reported DS was doing “wonderfully” there. I mentioned that I found that was interesting, considering the teacher reported he was sleeping all day and expressed concern about the medications he was on.
“How would the teacher know what meds he was on?” he asked.
I asked him why the psychiatrist would not speak to the mother. He said that she only saw DS for ten minutes a month for a med check and didn’t have time to talk to parents. I elaborated that the mother was not happy with their care and that we were setting up services for DS here in the state. After asking him what it would take to get DS discharged, the director said he wasn’t sure he could recommend that, stating that it would be considered medical neglect. Red flag number three.
“No, no, no,” I replied. “The mother has a choice.”
He asked me which records I wanted.
“All of them.” I replied.
“Well maybe I should call mother to clarify,” he said, but never did. Red flag number four.
Two days later I called the center again and asked the care coordinator to inform me when the records would be ready for FedEx to pick up at our cost. She assured me that she would call within four days.
On the evening before his mother found out exactly when DS could come home, I was sitting with her in a Bring the Kids Home Parent Night facilitated by the Mental Health Trust Authority. The Trust has been allocated a huge chunk of change, approximately $2 million a year for five years, to address the serious gap in residential mental and behavioral care in the state. After a lot of talk about process and hearing stories from other frustrated parents, I asked the last questions of the evening.
“Looking at goal number four addressing quality assurance, what is the current system for oversight of these facilities? How often do you do site visits?”
The answer I received was once every two years. And of these site visits, none are unannounced. This means that we spent $49 million last year sending our children with severe mental health and behavioral issues out of state to facilities that are only visited biennially. As a master’s level social worker with 15 years of experience working with youth who have survived these facilities put it, “Most of these places are just profit-mongering hell holes. Most of the youth who enter these facilities come out permanently damaged.”
On the brighter side, when asked about the in-state, short-term residential treatment centers, this social worker reported that Providence Discovery Unit is the “best she has seen in her experience, as far as individualized wraparound care and supporting youth to return to their families.”
My follow up questions for the state include:
When will the developmental disabilities that many of these children experience be addressed in their current treatment plans, or their plans when they return home?
When will the state implement an immediate and thorough oversight plan to ensure these children are not being permanently traumatized by mediocre facilities milking Medicaid dollars?
I know the Mental Health Trust Authority has funding for five years to find some of these answers. I know they are trying hard to address these serious issues and include families and consumers in the process. But right now, 749 youth are out of sight while we establish goals, prioritize and implement. Right now, many of these youth are going out of their minds to escape the horror of this broken and harmful system. Right now we have a budget surplus in our state. Right now, the only system in place when these youth return home is the “correctional” system. Perhaps Halliburton could put together a no-bid contract to provide these services. Better yet, I hear the Army is having a hard time recruiting.
Resources for activism addressing mental health issues:
Many thanks to the mother of DS and to Yvon for sharing their stories, information and resources. If you are the parent of a child in out-of-state residential care and are concerned about the services your child is receiving, please contact the Division of Behavioral Health section by calling Rita Sullivan at 269-8869.
Katy Parrish is a freelance writer and media activist who can be reached at firstname.lastname@example.org.
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in-sur-gent (in sur'jent), n. 1. a member of a group which revolts against the policies of its leadership.