What IS an Appropriate Education?
The Burrows family tries to cope with their eleven-year-old daughter’s recent diagnosis of tuberous sclerosis, a rare degenerative neurological disorder. This disorder causes excessive pain and drastic changes in behavior due to the growth of tumors in Melissa's brain and the medication prescribed to slow their growth indirectly causes obesity. As she becomes increasingly aggressive, her teachers and her family struggle to control her physical outbursts. When a residential placement became a necessity, a dispute arises between the school board and the Burrows over Melissa's placement.
Several months ago, James Earl Burrows moved with his wife of 30 years and his seven children to the town of Burkett, in Jenkins County. James had been a circuit minister, which required him to serve as a visiting minister, moving from church to church as need and local circumstances demanded. The tranfer to Burkett was a fulfillment of his dream to have a church of his own and to be near his extended family. Most of his seven children (four boys and three girls) had left home for college or other pursuits. Now only two children lived at home. Melissa, age 11, was the second to the youngest, and one of the last two still living at home. Diagnosed at age 8 with tuberous sclerosis, a degenerative neurological disorder, Melissa suffered from progressive tumors throughout her body which would eventually cause her death.
Last year, before the family’s move, a tumor in Melissa’s brain began growing rapidly, causing excessive pain and drastic changes in behavior. The prescribed medications slowed her metabolism and rate of growth of the tumor and, thus indirectly caused obesity. At 160 pounds, Melissa was a threatening presence, capable of hurting both herself and others. Her size made it difficult for teachers to restrain her during frequent aggressive outbursts.
Several weeks into the school year, Melissa’s potential to cause harm was vividly illustrated. One of her teachers asked her to pick up a pencil that she had thrown at another student. When Melissa refused to comply, she was reminded that she would lose tokens if she did not do as instructed. Melissa reacted angrily and when the teacher reiterated the consequences, she lost control. The teacher was chased into the hallway, grabbed by the hair, and slammed head first against the wall before Melissa could be restrained. The teacher suffered a concussion and Melissa was suspended.
After the suspension, Dr. Marion Campbell, the Exceptional Student Education administrator for Jenkins County, set up an IEP conference with the parents to reconsider Melissa’s placement, given her potential for aggressive, temper outbursts. At that time, placement in a class for students classified as educable mentally retarded was suggested. Initially, the Burrows were reluctant, so a second meeting was scheduled. After the second IEP meeting with Melissa’s parents, the details of her educational plan were decided. Melissa would be placed in a self-contained class for students with mental retardation (educable and trainable). She would be provided a full-time paraprofessional to provide constant supervision and assistance with her behavioral as well as physical and educational needs.
Melissa’s new teacher was a petite woman who was very consistent in her instructions and consequences. Melissa responded positively to her teacher and settled into the routine quickly. At school it seemed the change in placement had been an appropriate decision; however, at home, things were quite different. Melissa’s parents reported that she was resistant to their requests, very difficult to live with, and aggressive when demands were made. In an effort to help, the school district arranged for additional professionals to become involved in Melissa’s treatment.
A certified behavior analyst was enlisted to teach the family how to use interventions at home, and a nurse taught Melissa about her illness and how to take care of herself. A social worker was also assigned to the family as a support, arranging for services and assistance when needed.
In a short period of time, however, most of the professionals were frustrated with the family. For example, Kelly Martin, the behavior analyst, was assigned to teach the Burrows methods of decreasing Melissa’s aggressive behavior at home. The Burrows, however, did not seem to welcome her attempts and were erratic in their participation. It took Kelly over 45 minutes to get to the Burrows’ house, but on more than one occasion, they were not at home when she arrived. She felt they wanted a baby sitter for Melissa, not strategies for managing behavior. Once, when she arrived at the Burrows’ home, she was met by a sitter who informed her that the Burrows had gone to a movie. The parents had left instructions with the sitter to leave once Kelly arrived. This put Kelly in a terrible bind. She could not do her job, that of teaching the Burrows how to deal more effectively with Melissa, and she could not leave Melissa unattended. Kelly waited until the parents got home, and explained to them how inappropriate their actions had been. She knew they weren’t paying attention though. She was not surprised when they were again not home the next time she made a visit.
To make matters worse, each time that the Burrows appeared to be making progress, something happened to upset the process. They were both frustrated by the situation and struggling to come to terms with Melissa’s illness. Mr. Burrows’ new job was demanding, and required him to be away from home frequently. As a result, Mrs. Burrows was left at home alone to deal with their daughter’s health and behavioral concerns. It was obvious to everyone that Melissa’s health was deteriorating. Dealing with the demands of work and family as well as Melissa’s disease was difficult. Their stress was further complicated by what they perceived as intrusion from young professionals - long on ideas and suggestions but short on experience. How could Kelly and her assistants understand what it was like to live with a child like Melissa? They had never watched their own child deteriorate before their eyes.
Some of the people coming to the house were helpful, but Mr. Burrows knew that if Melissa got better, they would leave. He did not believe the professionals were really invested in his family. Furthermore, because Mr. Burrows was a tall, muscular man with a black belt in karate, he was not afraid of Melissa’s aggression. Likewise, Mrs. Burrows had long ago learned to calm Melissa when she was agitated by rubbing her back and speaking to her in a soothing voice. They did not appreciate or welcome Kelly’s attempts to instruct them on behavioral techniques for managing their own daughter’s behavior. They had successfully raised six other children.
The Burrows also felt guilty about Melissa’s illness, fearing that they had caused it in some way. They wanted whatever time she had left to be happy. Therefore, they gave her anything that she wanted and made few demands. They found the others’s insistence on discipline to be harsh and punitive.
After several months of escalating tension between the family and the school and community professionals, Dr. Campbell called another IEP meeting. The meeting was open to everyone who was involved with Melissa’s care at home and school. Altogether, 26 professionals attended to discuss placement options.
"We have called this meeting to discuss Melissa Burrows’ present and future educational placement," Dr. Campbell began as she sat at the head of the large conference table. "I’m sure that all of you who work with Melissa and her family are well aware of her recent decline in health as well as her escalating bouts of anger and aggression. We fear that there is a risk to her safety as well as those around her if she remains in her present classroom," she continued. "Residential placement has been considered in the past. Can we have some discussion on this option?"
Kelly Martin, the behavior analyst spoke first. "Due to what I’ve observed, I strongly recommend a residential placement for Melissa."
"I would have to agree," said James Allen, the school social worker.
"Residential treatment will never be an option for my daughter!" Mr. Burrows said emphatically. "God gave us the responsibility to care for Melissa no matter what. It would be a violation of our religious beliefs to send her away just because she is sick."
Finally, after much discussion with little agreement, Mr. and Mrs. Burrows said they would pray for a change in Melissa’s behavior and the strength to make the right decisions.
A few days later, Mr. Burrows called Dr. Campbell’s office.
"Dr. Campbell, this is James Earl Burrows, Melissa Burrow’s father."
"Yes, Mr. Burrows," responded Dr. Campbell. "What can I do for you?"
In a strained voice, Mr. Burrows explained, "It is about my daughter. She has become a safety concern to the rest of my family." Mr. Burrows took a deep breath before he continued. "My wife is a small woman who can not handle Melissa’s rage anymore. Last night Melissa punched her mom in the stomach and we had to take her to the emergency room with a broken rib. This can’t continue but we don’t know what to do or where to turn."
"I’m very sorry to hear that, Mr. Burrows. I know how difficult this must be for your family. Why don’t I call Burt Turner at Social Services and set up a meeting to discuss your options?" responded Dr. Campbell.
Within a week, Dr. Campbell arranged a meeting with the Burrows; Mr. Turner; and Tony Angostino, the Jenkins School Board Attorney, for the purpose of discussing a residential placement for Melissa. Mr. Turner mentioned several facilities that would be able to serve Melissa adequately.
Mr. Burrows responded, "What about the Reichly Institute in Clancyville? A teacher friend at our church said that this is the best facility in the state and that it specialized in neurological disorders. Our friend said that it was Social Services’ responsibility to provide the best placement."
"I’m afraid your friend misled you, Mr. Burrows." replied Mr. Turner. "It is not our responsibility to provide the best services, only the best possible services within our financial restraints. Although this may be one of the largest districts in the state, it is certainly not the wealthiest. Even though Dr. Campbell has agreed to share costs with us regarding Melissa’s educational needs, I’m afraid sending Melissa to Reichly would be cost prohibitive for both Social Services and the school board. And besides, these other schools I’ve outlined also have good reputations and wonderful programs to offer," continued Mr. Turner, pointing to the names on his list. "And, she would be closer to home," he added.
"I just don’t know" responded Mr. Burrows. "I’m going to have to discuss this with my wife and my lawyer," he replied as he turned to gather his belongings.
Several days passed before Dr. Campbell heard from Mr. Burrows again. When she did hear from him, it was in the form of a registered letter.
"Dear Dr. Campbell,
During our recent meeting with Mr. Turner of Social Services, and Mr. Angostino, the Jenkins County School Board Attorney, we discussed appropriate educational placement for my eleven-year-old daughter Melissa, who suffers from a rare degenerative disease called Tuberous Sclerosis.
Her mother and I strongly feel that Melissa’s needs would be best met at the Reichly Institute, but because Mr. Angostino is unwilling to provide the financial assistance necessary, we have no alternative but to hesitantly accept a less appropriate residential placement. We will agree to Jenkins County Public Schools meeting her educational needs provided the following conditions are met:
1) The school is to teach her appropriate skills through an extensive behavior modification plan,
2) The school is to in no way restrict her or punish her during her time in school programming,
3) If self-injurious behavior resulting in medical liabilities or injurious behaviors toward others results in medical liabilities, the school must incur all costs.
These terms are not negotiable, as I have conferred with my lawyer as to the rights of my family with regard to a free and appropriate education for my daughter. I will expect to hear from your office soon as we would like for Melissa to start school as soon as possible.
Sincerely,
J. E. Burrows"
Dr. Campbell sighed. She was an experienced special education administrator who knew how complicated situations like this could become. It had been her goal to negotiate an arrangement suitable to both the family and the school/community personnel. She wondered how she might accomplish this now. Had it ever been possible?
Discussion/Study Questions
Additional Questions
CEC Competency/Knowledge Areas Address in the Case
Major Areas:
Rights and responsibilities of parents, students, teachers, and schools as they relate to individuals with exceptional learning needs.
Typical concerns of parents of individuals with exceptional learning needs and appropriate strategies to help parents deal with these concerns.
Effects an exceptional condition may have on an individual’s life.
Other Areas:
Applicable laws, rules, regulations, and safeguards regarding the planning and implementation of management of student behavior.
Educational implications of characteristics of various exceptionalities.
Importance and benefits of communication and collaboration that promotes interaction with students, parents, and school and community personnel.
To the National Tuberous Sclerosis Association
To
the National Institute of Neurological Disorders
©2000
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