Making Inclusion Work for Children with Significant Disabilities
It's the week of my daughter's sixth birthday. Over the summer we decided we'd throw her very first birthday party with friends instead of family. We made reservations, picked out invitations, and started planning the details. Cake or cupcakes? Or do we skip cake and just have lollipops since she doesn't eat? Balloons or streamers? Girls only, or girls and boys? How many invitations to send? Who to invite?
The class lists for this school year came out three weeks ago, and with some help, we picked out children to invite to the party. A mix of friends from Kindergarten last year, and this year's first grade class. 16 friends invited.
A tiny voice in the back of mind asked, "Will anyone WANT to come? They are so different than my daughter...."
The invitations went out in the mail and the next day my questions were answered. Yes, they want to come. In fact, her party was the hot topic of conversation at school that day. I suppose I shouldn't have been surprised since we always hear that she's very popular. But I could have never imagined what an important part of the class she has become.
Three years ago we moved to this community after coming to the realization that we were spending huge chunks of our lives in the hospital or at appointments five hours from home. The first order of business for the move, before even beginning to look for a house, was choosing which school district would be the best fit for our daughter. We did our research, talked with other parents of children with special needs, and weighed the pros and cons of the eight districts in the area. Although it wasn't the only reason we reached our decision, we settled on a district that supports inclusion for children of all ability levels.
What is Inclusion?
In the educational setting, inclusion tends to refer to the practice of educating children with special needs of all ability levels within the general education classroom setting. Inclusive schools eliminate the practices of self-contained classrooms and segregated programs. They embrace the notion that all children can learn, that all teachers are capable of educating children with different ability levels, and that a diverse learning environment benefits all children.
Schools that practice inclusion work to support the child with special needs in the general education classroom. This could mean anything from modifying the curriculum or environment to providing one-on-one assistance in the classroom, or even providing a totally alternate curriculum to address whatever level the student is at. Children with special needs continue to be served by an Individualized Education Plan (IEP), but their goals are addressed in the classroom.
Inclusion for Children with Severe Disabilities
My daughter is significantly impaired. She is nonverbal and nonambulatory. She has spastic quadriplegic cerebral palsy that severely limits her ability to purposefully move her body. Her vision is minimal. Additionally, she has significant health and medical needs that require specialized interventions throughout the day.
In general, she looks the exact opposite of the other children in her classroom. But every day, with the help of her one-on-one nurse and the special education teacher, she participates in Reading, Writing, Math, Unit Studies, PE, Art, Music, and even Spanish lessons with her typical peers, just in different ways.
Nearly all academic activities are modified to allow my daughter to learn and take part in the classroom. Responses to questions are preloaded into her switch to allow her to participate in classroom discussions. A helper--a highly sought after classroom job--completes my daughter's written work after finishing his or her own. Manipulatives, like blocks, tokens, or foam numbers, and hand-over-hand assistance are used for math lessons. Adaptive equipment and hand-over-hand assistance allow her to complete art projects. During PE, she participates in the activity whenever possible. She helps mark the finish line, uses her switch to "count" exercise repetitions, or "walks" around the track with help from her nurse. If the activity isn't appropriate for her to take part in, she does range of motion stretching with her nurse on a mat in the corner of the gym.
Whenever the weather is nice, she plays outside with her classmates with the assistance of her nurse. The playground is accessible and has a wheelchair swing. Her switch is programmed to lead games like Red Light, Green Light, and Red Rover. When the weather prevents her from having outside recess, a recess friend--another favorite classroom position--is chosen to play games inside. As a team, we determined that the lunchroom was overstimulating, resulting in a very upset girl. Because she is solely tube fed, lunchtime became the perfect rest period, which takes place in a quiet, empty classroom.
Fitting in IEP Goals
Creative scheduling and planning may be needed to facilitate practice for the IEP goals. This may include looking at how the goals are written and adjusting them to ensure that they can be addressed during the general education schedule. Many goals can be targeted during classroom time. Fine motor skills can be practiced with the OT during the class writing block or art. Gross motor skills can be addressed with the PT during PE. Augmentative and alternative communication devices can be practiced with the SLP or aide throughout the day.
The Benefits of Inclusion
Inclusion promotes another level of diversity in the classroom. Typical peers have the opportunity to learn that people with disabilities have value in our society. They also learn how to interact with them, teaching an important life lesson on acceptance.
Children with significant disabilities benefit from inclusion by being surrounded by peer models who provide developmentally appropriate examples of communication and play. Interacting with children who are speaking and typically communicative rather than the traditional special education model (which would have the child placed in a classroom with other nonverbal children), provides a much higher level of stimulation than a single adult educator could. Inclusive classrooms give the child with special needs the opportunity to be challenged academically, even when the material may be too difficult, and help to prevent the child's learning abilities from being underestimated.
Additionally, inclusion allows the child with special needs to make friendships with children who are able to lead and assist in play and communication.
Potential Problems of Inclusion
In my child's case, the positives of inclusion in a typical classroom vastly outweigh the negatives. However, inclusion is not the best fit for every child. Due to their disabilities, some children may not be successful in an inclusive classroom. A child with extreme distractibility that inhibits learning, behaviors making him unsafe to himself or his classmates, or severe medical fragility that prohibits him from attending school is not a good fit for an inclusive classroom.
Lack of support from the school's administration and lack of training for classroom teachers and special education staff, which may include speech language pathologists, occupational and physical therapists, vision specialists, behavior specialists, and many others, are two of the major problems that occur for inclusive classrooms. Children with significant disabilities will require a high level of modification and accommodations to both the environment and the academic content. Many will require one-on-one assistance for classroom activities and personal care, making lack of adequate staffing another concern. Without the resources to meet these needs, children with severe disabilities cannot be successful in the general education classroom.
Schools That Don't "Do" Inclusion
The Individuals with Disabilities Education Act (1997, 2004) requires schools to attempt to educate children who have disabilities with children who do not have disabilities in the least restrictive environment whenever possible, providing the argument for inclusion. Schools cannot determine that they are unable to provide an inclusive environment for a child with disabilities based upon lack of staffing, lack of training, or inadequate equipment or facilities. Schools are required to provide necessary services, and supplementary aids to make the child successful whenever the nature or severity of the disability does not allow inclusion to be satisfactorily achieved. [20 U.S.C. 1412 (a) (5) (A)] Schools cannot simply decide that they can't provide an inclusive education for a student with disabilities, and cannot claim that the segregated classroom is superior without providing proof that the child cannot be successful in a classroom with typical peers given reasonable accommodations and necessary support.
Implementing inclusion for your child may not be as simple as telling her IEP team of your wishes. Change is not easy for anyone, and school districts that have not moved away from the traditional model of special education will need to provide their staff with training and may need to make modifications to their facilities. Work with your school's administration and special education team to set up a plan for your child's day. Do some research to determine which teachers would be most open to an inclusive environment. If possible, spend a day observing in the classroom to look for opportunities for your child to be included.
Inclusive classrooms can provide highly rewarding experiences both for children with significant disabilities and their typically developing peers. It is not appropriate for every child with disabilities, but should be considered as a potential school placement for all children, regardless of their level of disability. Inclusion promotes diversity and acceptance, and enhances the quality of life for the child with special needs.
L. Kelly is a mom, wife, and school-based speech language pathologist in Nebraska. She has a daughter, Molly (6), who has multiple disabilities, and is the foster mom of three other children, one with special needs.
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The information on these pages is not a substitute for appropriate medical care. Please contact your child's physicians before making any changes in your child's care. Complex Child is for research purposes only and does not constitute medical advice.