What are ways our community can support our children with special needs?
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Whether we are born with or acquire a disabling condition, dis/ability is a natural part of our human experience. Regardless of our physical, social/emotional, intellectual, or sensory characteristics, we are all more alike as human beings than different. Historically, societal prejudices, stereotypes, negative attitudes, and systemic barriers have served to isolate, segregate, and congregate individuals considered to have disabilities, and to focus on deficits and differences rather than similarities and our common humanity. Multiple forms of testing and diagnosis have been used to sort individuals, label those deemed ‘abnormal’, and relegate them to separate and unequal life opportunities and conditions – often in large, deplorable institutions. For example, prior to Public Law 94-142 in 1975, now called the Individuals with Disabilities Education Act (IDEA), youth who were identified as having disabilities were excluded from our public schools and denied a free, appropriate public education. Through intensive and ongoing parent advocacy and self-advocacy movements that followed the civil rights movement, along with landmark legal decisions and increasingly progressive federal disability legislation, services and supports for youth and adults identified as having special needs have gradually become better and more inclusive. Our schools and communities have become more accessible and welcoming – both physically and attitudinally – yet many barriers remain to fully integrate and meet the needs of youth with special needs and their families.
Schools receive additional funding to serve students identified as needing special education, which is used to provide additional staffing and oversight. Although additional resources are greatly needed, schools have an incentive to formally identify students and assign a disability label, such as “learning disability”, “intellectual disability”, and “emotional disability.” A child may be given one label in one school district and another label (or no label) in another district, with rates of identification varying from state to state. Why is that? Although professionals attempt to gather sufficient information for a diagnosis, the process is not without its problems. For example, many districts over identify students of color as having a disability. Once “in” special education, many students experience a slippery slope in the wrong direction – i.e., watered down curriculum, removal from general education classrooms, lower expectations, and exclusion from the life of the school. Special education is a set of services, NOT a place. In other words, individualized services and supports should be brought to the student in inclusive settings, rather than relegating students to classrooms “for” students with particular labels. Stated another way, the law forbids making people go to a segregated environment in order to receive services that could be provided in inclusive settings.
What are ways in our community to support our children with special needs? First and foremost, attitudes and assumptions drive actions. If community members embrace the fact that all children have unique gifts and talents, including children considered to have dis/abilities, and all children belong, then it is more likely that all children will be included as part of the fabric of our society. Conversely, if community members focus on what children can’t do or their differences, rather than each child’s strengths and unique abilities, it is likely that children will be excluded and relegated to “special” (separate) places and activities: e.g., special schools, classrooms, extracurricular activities, clubs, camps, etc. By maintaining high expectations and treating each child with dignity and respect, children are more apt to meet and exceed expectations. Just because a child uses a wheelchair, it does not mean they can’t hear or are not intellectually capable. Adults often speak louder or speak ‘down’ to individuals with visible dis/abilities. Presuming competence is the least dangerous assumption when interacting with individuals with dis/abilities.
Second, educators, parents, School Board members, and other community members would benefit from an awareness of the laws that guide services for people considered to have disabilities. The Individuals with Disabilities Education Act (IDEA) mandates a free, appropriate public education in the least restrictive environment, and an Individualized Education Plan (IEP) for each identified child. Per the Americans with Disabilities Act of 1990 (ADA), which prohibits discrimination on the basis of disability, schools must provide educational opportunities to youth identified with disabilities that are equal to their peers who have not been labeled. The Supreme Court’s Olmstead decision ruled that unjustified segregation of people with disabilities constitutes discrimination in violation of the ADA and mandates services in the most integrated setting. Thus, schools and other programs that serve youth must offer equal access and inclusive programs and services for all youth. However, the Annual Yearly Progress mandate of No Child Left Behind and the current high stakes testing pressure on teachers and schools has led to a significant decrease in inclusive education and negative attitudes toward students labeled as having a disability, who are being blamed for school’s lower letter grades. We have a long way to go to fully realize the intent of the federal legislation. In a recent U.S. Department of Justice case, the state of Georgia was charged with illegally segregating students with disabilities under the ADA. If schools adopt a universal design for learning framework (see www.cast.org) to optimize teaching and learning for all students, there will be less need for ‘after the fact’ retrofitting to accommodate and support students with IEPs.
Community members can support fully inclusive schools, including preschools, by being informed and involved in their local schools. This may include providing input regarding superintendent candidates, voting for supportive school board members, and supporting referendums and other efforts to provide sufficient funding to hire highly qualified teachers and support staff, and for technology and other resources to enhance access to learning for all students. Given the significant state cuts to school funding, school resources are stretched thin for providing all the support that students need. Community members can also lend their time as volunteers at their local schools and become active advocates.
Third, we must help each child’s network of support become stronger and more knowledgeable about available school and community services and supports. Family members and other caregivers need accurate, timely, and clear information in order to navigate our complex education, health care, and social service systems. “Just in time” information in formats that families can access when needed will help families make informed decisions and participate as co-equal members of educational teams from “cradle to careers.” For example, new parents need information about accessing First Steps (www.infirststeps.com) and pre-school programs for early childhood intervention, provided by law through IDEA, and support for acquiring parenting and advocacy skills so they can best meet the needs of their infant and young child. Parents/guardians and youth in K-12 schools need ongoing information about the Individualized Education Plan process, their due process rights, legal mandates for transition planning and services, and more. Parent-to-parent networks and connections to local and state advocacy groups have also been very helpful to parents/guardians whose children have disabling conditions, as have student self-advocacy groups. As students move toward completion of their K-12 schooling and transition to adult life, students and families may need assistance to navigate the adult service system regarding post-secondary education, employment, housing, transportation, and other services and supports for community living. In Indiana, IN*Source (www.insource.org), a statewide parent information organization, and the Indiana Institute on Disability and Community (www.iidc.indiana.edu), are good resources for families. Community members can support students and families by assisting to connect them with needed services and resources, and employers can provide internships, work-study experiences, apprenticeships, and jobs for young adults with special needs, and can help other businesses to understand the benefits of doing so.
In sum, people considered to have dis/abilities, like most members of our community, wish to be full, participating, and contributing members of their school, home, work, neighborhood, spiritual, and recreation settings and activities. To do so, our youth and adults identified with dis/abilities need choice and control of their futures and equal access, opportunity, and a caring and committed network of support.
How do you see students with special needs being supoprted in our community? What can we do to better support this population of students? Share your thoughts in the comments below, and on social media using #AmGradIndy.
Pat Rogan, Ph.D., is a professor of special education at Indiana University School of Education at IUPUI. From 2008 to 2015, she served as the Executive Associate Dean of School, where she provided leadership for Teacher Education, Counselor Education, Educational Leadership, the Urban Education Studies PhD, and Higher Education and Student Affairs programs. She consults nationally and internationally on issues of systems change.