Advocating for Students with Disabilities: A Primer for Parents, by Patricia Connelly, Parent Advocate

As our children reach school age, some of us come to learn just how challenging exceptionality – regardless of dis/ability – can be to negotiate, both for our children and ourselves. The overwhelming majority of primary and secondary, public and private schools in this country aim straight for the middle of the bell curve of intellectual and social development in both how and what they teach. The student “ideal” upon which most curricula are based is a child who progresses in predictable stages academically (“on grade level”), is well adjusted with peers and teachers, and pursues “age appropriate” interests and relationships. But what about the child who does not conform to these norms? How can we as parents help make sure that an educational system built for the “rule” does not leave our “exceptions” behind?

Most special education experts define “exceptional children” to be those kids whose performance deviates from the norm, either below or above, to such a degree that individualized special education and related services are necessary for them to benefit fully from education. The term is deliberately broad and inclusive: it includes children with learning, emotional, and physical disabilities as well as those whose intellectual gifts or special talents are so superior that they, too, need to have their curriculum and instruction modified in order that they may fulfill their potential. Further complicating this picture and raising the stakes even higher for parents, teachers, and schools, is that exceptional children may — and often do — possess two or more special abilities and/or disabilities.

In general a “special needs” student is one who has a physical, learning, and/or emotional disability that interferes with her education. What does this mean? A child who cannot walk due to a birth defect or injury but who has no cognitive impairment is a “special needs” student in so far as she needs a fully wheel-chair accessible school and, perhaps, a paraprofessional aid to assist her to get around. On the other hand, a child with autism will need specially trained teachers, a modified curriculum, and a variety of related services.

The federal law known as the Individuals with Disabilities Education Act (IDEA), first enacted by Congress as the Education for All Handicapped Children Act in 1975 (and most recently reauthorized in 2004), mandates that all schools receiving public funding must provide all children with disabilities, from age three through 21, “free appropriate public education” in the “least restrictive environment” with the necessary related services (e.g., speech therapy, occupational therapy, physical therapy, counseling, etc.) to allow them to benefit from an education.

Like all individual rights and services guaranteed under federal law, however, it not enough to ask for help. Your child must first be evaluated and certified for an Individualized Education Program (IEP) or an Individualized Family Service Plan (IFSP) if your child is under age three.

Although the IDEA mandates and helps fund educational and related services for children with disabilities, it is up to the states and their local school systems to see that special education is delivered. As there is considerable variation from state-to-state, it is important to consult your state’s Department of Education and your local school district for the specific procedures and regulations that pertain to your child’s school. In New York State it is the Department of Education’s Office of Special Education that oversees the implementation of federal and State laws and policy for students with disabilities. In New York City, the Department of Education’s Office Division of Students with Disabilities and English Language Learners is charged with keeping schools and families of students with disabilities informed and supported concerning current special education policy and procedures.

The federal government, via IDEA and other legislation, has established and funds a nationwide network of Parent Training and Information Centers whose mandate is to help families of children of all ages (birth through age 26) with all disabilities – physical, cognitive, behavioral, social, and emotional – to, among other services:
• Understand their rights and responsibilities under the IDEA;
• Obtain appropriate services for their children; and
• Resolve disagreements and understand the benefits of alternative methods of dispute resolution.

Advocates for Children, Resources for Children with Special Needs, and Sinergia/Metropolitan Parent Center are the federally designated parent centers serving New York City.

Regardless of regulatory differences among states, I encourage both “newbie” and veteran parents of children with disabilities alike to keep current on the fundamentals of the special education evaluation and certification process. To more fully acquaint yourself with special education policy and procedures in New York City I recommend Advocates for Children’s Short Guide to Special Education and other publications. To know the following core operating principals will get first-timers pointed in the right direction, and save the rest of us more than a little heartache and frustration.

• You have a right to get your child tested and evaluated — at the public’s expense — for special education and related services even if his teacher or school’s principal does not feel it is necessary.
• If you feel that your child’s school lacks the resources or expertise to conduct a thorough evaluation, you have the right to request that it be either conducted at the school-district level or in the private sector, if the school district also lacks appropriate expertise, at public expense.
• Once the initial evaluation has been completed, you must be invited in writing to attend a conference concerning the school or district-based assessment team’s conclusions and recommendations. Attend this meeting! Bring someone you trust to this meeting. This person need not be an educator or lawyer, just someone who whom you believe has the knowledge and skills to help you advocate for your child.
• If your child’s school or school district does not have the resources to provide IEP/IFSP-mandated related services within the school (e.g., occupational therapy, physical therapy, etc.), by law these services must still be provided at public expense by a private provider.

Put all your requests for testing and evaluation for special education and/or related services in writing to the appropriate school and/or district special education administrator. By sending a letter (via certified mail is best) you will not only be able to track accurately your efforts on behalf of your child but will put her school district “on notice.” The school district must respond to you within a very limited timeframe (usually 60 days for an initial request and 30 days once your child has already been certified for an IEP).

Once your child has been certified for special education services, by law there must be an annual review of her IEP/IFSP mandated program placement, educational goals and related services. Again you must be invited to the annual review conference in writing. Again, you may bring an advocate with you. Before attending this conference, review all report cards and other written communications sent home by the teacher and other service providers. The more current you keep with your child’s progress at school, the better you can advocate at the annual conference and throughout the year with her teacher and related service providers.

Having undergone the initial special education evaluation and certification process with my own son who has dyslexia and associated learning disabilities more than six years ago, I wish I could say that once you’ve gotten to the first annual review you can sit back, breathe a big sigh of relief, and return to family life as usual. Alas, by this point, you have successfully navigated only the tip of the iceberg! The good news is you have gained the fundamentals to explore what lies below the surface and chart your child’s educational course in the years ahead. And, of course, you’ve become an important ally and resource for other parents just setting sail.

Whatever their specific needs, our exceptional children need exceptionally committed parents and other adults in their lives to help them reach their educational and social potential. Needless to say, ours is a long and winding road, often very difficult to navigate alone, especially so when we may have more than one job to juggle as well as other kids and needy family members to care for. The following are my seven basic “rules of thumb” for effective parent advocacy – which has kept this special ed mama centered and sane for many years!

• Trust that you know your child best. Never accept on face value that you don’t have the expertise or experience to find out and do what is best for your exceptional child.
• Seek the counsel of other parents who have been down the same road before you.
• Don’t fear labels: “special needs” and “gifted and talented” are just short hand for paths to getting what your child needs.
• Emphasize collaboration over confrontation with your child’s teachers, related service providers, and school administrators.
• Know your rights under the law.
• Not every one of your child’s needs can be addressed all the time — not at school, and not at home. Pick your battles well and always assess the personal, family, and public resources at your disposal at any given time.
• Talk often with your child! Be honest and straightforward about what you are doing on her behalf and listen to her own desires, fears, and hopes.

Remember that it is hard-wired into us as parents to consider our children exceptional – unique, one-of-a-kind, irreplaceable – regardless of dis/ability. This way of thinking is a cornerstone of our humanity. It is also what makes us our children’s first and most important teachers and advocates.

As a Special Education Parent Advocate, Patricia Connelly counsels, assists, coaches, and advocates on behalf of families of children with disabilities, as they navigate the often muddy and choppy waters of the special education “system”—regardless of educational setting or disability classification—from initial evaluation and certification for services to subsequent annual and triennial IEP (Individualized Education Program) conferences and through every critical period of transition. Patricia’s practice provides “soup to nuts” services, including consultations via telephone and in-person; review of IEP and relevant evaluations and other documents; attendance and support at school and program-related meetings; research needed to support the child’s needs; correspondence with schools, district, city/state agencies and others as needed; as well as preparation for and attendance at mediation and/or due process hearings. Patricia can be contacted at [email protected]

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