Mainstreaming Children with a Neuromuscular Disease: A Map of Concerns

Increasingly, children with special needs, including those with a neuromuscular disease (NMD), are being educated alongside children in ordinary school settings rather than being segregated in special education classrooms. The recently reauthorized Individuals with Disabilities Education Act (IDEA; 1997) mandates that children with disabilities receive as much of their education as possible in the general education classroom and within the general education curriculum. With this growing trend of both mainstreaming and inclusion, it is an important time for educators, researchers, and practitioners to develop a framework for understanding the needs and concerns of key stakeholders involved in the educational planning of children with disabilities. There are advantages and disadvantages of mainstreaming and inclusion that have been explored for different groups of children, and advantages usually predominate. However, the focus of most evaluative research has been on children with cognitive disabilities rather than on children with physical ones (Fuchs, Fuchs & Fernstrom, 1993; Madden & Slavin, 1983; Sindelar & Deno, 1979). The review by Hunt and Goetz (1997) is an exception. This team reviewed 19 studies of children with severe disabilities who were fully included in their schools. They conclude that the available research supports inclusion as an effective method of achieving positive academic and learning outcomes, as well as positive social outcomes. Importantly, Hunt and Goetz (1997) also pointed out that there is a need for research that includes formal participatory research methods in which key stakeholders provide experienced-based perspectives. The current study is one example of including perspectives from three key stakeholders in education trying to address a specific disability: (a) individuals with NMD, (b) parents of children with NMD, and (c) the educators who work with them. Neuromuscular diseases are acquired or inherited conditions that affect cells in the spinal cord, the peripheral motor nerves, the myoneural junctions between the nerves and muscles, and the muscles themselves (Sandoval, 1998). All of the NMDs result in muscular weakness and fatigue. These diseases are relatively uncommon, with less than 100,000 cases of all forms of NMDs prevalent in the United States, most having an adult onset. The most common NMDs found in children are Duchenne muscular dystrophy (DMD), Becker's muscular dystrophy, spinal muscular atrophy (SMA), Myotonic muscular dystrophy, and Charcot-Marie-Tooth Syndrome. Many children with these diseases experience contractures and scoliosis. As a result many come to use orthopedic appliances and wheelchairs (e.g., those with DMD, SMA). Children commonly miss school because of respiratory and other illness, and because of hospitalization from surgery. Because mobility is impaired for children with NMDs, an obvious need to be addressed is often physical accessibility. Most schools have now been modified with ramps for wheelchairs, accommodations in plumbing, and special furniture, although electronic aids such as wheelchairs and computers may need extra power supplies. Weakness and fatigue are perhaps more difficult to contend with in the school setting. Children with NMD may need extra time to finish assignments due to muscular difficulties in writing or seeing. It is important to set high, but achievable, academic expectations for children with NMD to allow them to perform to the best of their capabilities (Sandoval). On the whole, however, little has been documented about the school experiences of children with NMD. Attention to educational issues with children with NMD has been sparse, possibly because these conditions are rare. There is a widespread misconception in schools that once physical barriers have been removed (e.g., providing wheelchair access), there are no further challenges to address. Access is indeed a problem, but there may well be other nonphysical barriers to overcome if inclusive programming is to be successful. …