Mrs. Sissi Langford, Co-Chair Committee on Federal Legislation and
Mr. Les Sheaffer, Board of Directors, Chairman, Committee on Federal Legislation,
National MPS Society, Inc.
Revised July 11th, 2002
The purpose of this document is to make you aware of the complex challenges and problems in providing appropriate special education and related services to children suffering from MPS, ML and other degenerative disorders. Due to the degenerative nature of MPS disorders many children who suffer from these disorders do not receive a free appropriate public education. We ask for your assistance in determining how to include degenerative conditions into the framework of IDEA and provide educators with reasonable methods to address this situation.
Congressional findings have stated, “disability is a natural part of human experience and in no way diminishes the rights of individuals to participate in or contribute to society”. In accordance with that statement we believe it is appropriate to relate to you our concerns with respect to services for special needs children with degenerative disorders.
MPS Disorders:MPS disorders are progressive Lysosomal storage disorders caused by the body’s inability to produce certain enzymes needed to breakdown and recycle cells. The disorders result in damage to the body’s cells by accumulated cellular material. This progressive damage manifests itself throughout the body including the heart, bones, joints, respiratory and central nervous systems ultimately causing significant hyperactivity, loss of mobility, profound mental retardation, diminished quality of life and drastically shortened lifespan. These disorders result in a variety of medical and educational hardships for MPS children and significant difficulties for parents providing for their care.
Degenerative Disorder:In this discussion when we refer to a “degenerative” or “progressive ” disorder we are referring to a disease for which effective therapies are not available to correct, significantly delay or manage the progression of the disorder. It is important to understand that most MPS children lose developmental milestones as damage from storage progresses in cells.
Areas of Concern Involving Special Education Services and Related Services for Children with Degenerative Disorders
Extension and Maintenance of Current Skills:Critically important to children with progressive disorders is the extension and maintenance of current physical, communication, social, community awareness, self-help and other skills.
Ironically, as children with degenerative disorders lose previously developed skills as a result of their disorder they are frequently denied the services they had been receiving. The approach of withdrawing services when the child looses ability as a solution is frustrating and difficult to understand. In our experience many parents have been faced with loss of services in this manner. We feel alternative methods of meeting the unique needs of these disabilities is a solution to this problem.
The traditional focus of special education is on improvement in skills with a decreasing level of support as improvement occurs. Since goals for improvement may not be possible for children with MPS disorders, educators often want to regulate the students to self contained classrooms with children who are very impaired without consideration of the benefits found in the child’s interaction with others functioning at a higher level.
Educational plans for children with MPS disorders should include rapidly increasing support and assistance as regression in behavior and cognitive skills occur. Planning and goal development may be difficult for personnel who do not have experience with children whose disorders are progressive. Enhanced services in critical areas as determined by Therapists, Orthopedic Specialists, Geneticists, Physicians and other professional personnel to maintain and extend abilities and to delay the loss of skills would add greatly to the educational experience of children with these disorders.
Mobility:Many children with MPS, ML and other degenerative disorders benefit greatly from early and regular adaptive physical activity structured in a way to maintain and improve mobility, coordination and physical skills. The ability of children with progressive disorders to receive a free and appropriate education is directly related to their ability to maintain mobility and related skills and be involved in regular adaptive physical activities. It is important to recognize that the provision of adaptive physical education can also assist in maintaining and/or improving social and cognitive skills.
Therefore, our comments with respect to mobility refer to IDEA section 34CFR Part 300 Section 300.26(b) (3) (i) Special Education, Specially Designed Instruction to address the unique needs of the child that result from the child’s disability. In commenting on the reauthorization of IDEA we recommend the inclusion of a statement providing for: “Delivery of expanded adaptive physical education and any related service of therapies that contribute to the improved and continued mobility of children whose disability has been shown to be a degenerative condition.”
Improved adaptive physical education and related services specially designed to address the unique needs of children with degenerative disorders will contribute to a greatly enhanced educational experience for children who in most cases receive very limited benefit from the academic aspects of their curriculum.
Communication:Children with MPS and other degenerative disorders can derive significant benefit from a structured speech therapy regimen tailored to extending speech and communication skills. These services include the use of adaptive technology and support devices such as FM Systems, Picture Symbols and other communication enhancement equipment.
Children with MPS and similar degenerative disorders rapidly lose communication skills creating significant barriers to the delivery of other educational services and participation in educational activities. Speech therapy services tailored to maintaining communication skills for the longest period of time possible from early intervention forward will contribute to an enhanced education experience for affected children.
Socialization, community awareness and self help skills: Children with MPS and similar disorders must be able to participate in the daily activities of the classroom and playground. Adjustments in the environment and intensity of support services must be made and monitored for appropriateness as these children experience a regression in skills.
MPS children need help to practice safety skills in the community and remain independent as long as possible in regards to movement in the classroom and in the community. Creative self-help methods in addition to teacher and parent education are vital in meeting goals to maintain current levels of functioning.
General Comments Regarding Access to Free and Appropriate Education (FAPE) for Special Needs Children with Degenerative Disorders
To summarize our concerns, many children with progressive disorders are significantly undeserved in the public school system under current IDEA, state and district policy. We are not alone in our concerns: the 2001 Report to Congress on Implementation of IDEA (page IV-27) stated, “Many disenfranchised children with challenging behaviors are unserved or underserved.” Additionally, “A number of children with emotional/social needs such as those with autism, developmental disabilities, and those who are homeless, migrant and or in foster care and psychiatric facilities are not being served or are under served.” MPS children clearly fall under the category of children with developmental disabilities. Teachers often compare the behavior of MPS children with that of severely autistic children.
The specific services that we feel may not be adequately delivered to children with progressive disorders include the extension of current skills, mobility, communication, socialization, community awareness and self-help skills are vital to the appropriate educational services these children are entitled to under IDEA.
Litigation through Due Process as a method to resolve adherence to FAPE is often an unreasonable option in obtaining the appropriate services for children who do not fit the cookie-cutter mold currently in place for special needs children.
We understand the frustrating situation educators of MPS children face to improve educational results, likewise we are convinced that these children meet the definition of a child who requires special education services under IDEA and that the unique needs of this disability are not being met.
Conclusion, Recommendations and Requests
The expansion of resources and services available to special needs children based on the unique needs of a disability is vital. Perhaps more important however, is the need for a change in the atmosphere in the special education system and the approach to children with degenerative disorders. This can be achieved by educating teachers, administrators and parents about loss of milestones and implementing creative Individual Education Plans to ensure that children with degenerative and progressive disorders are receiving an appropriate education.
Communication and collaboration between parents, school personnel and other health care providers is critical in creating an atmosphere of trust and support that is necessary to deal with this disorder. Specific policy ensuring meaningful special education services for children with degenerative and progressive disorders is needed. Policies that are structured to address the needs of children with degenerative disorders would serve to provide the atmosphere and services that would truly benefit these special children.
Informational Resources Used to Prepare this Document
The Individuals with Disabilities Education Act in the United States Code at Volume 20
The Table of IDEA Regulations 34, Code of Federal Register Part 300
The United States Department of Education
Ensuring an Appropriate Education for Children with MPS Disorders,
Michael B. Brown, PhD, East Carolina University
MPS Society Publications
Wrightslaw: Special Education Law
Chair, Committee on Federal Legislation
National MPS Society Inc.
PO Box 1468