The ABCs of Advocacy for Children With Special Needs

Know the Federal Law

The IDEA (Individuals with Disabilities Education Act) passed in 1997 insures that all children with disabilities receive a free, appropriate public education. The law provides for:

• An appropriate evaluation by the school district
• An Individual Education Plan to be implemented in the least restrictive environment
• Parent participation in decision making due process safeguards.

IDEA update

In 2004 Congress renewed the IDEA by passing IDEA04 , to take effect by July 2005. A main goal of the new law is to reduce paperwork requirements, thereby enabling special education teachers to spend more time with students. States have been directed to minimize the number of rules and regulations they require of local school districts and to identify any state-imposed rule, regulation or policy that is not required by federal regulations.

The first step for parents: If you suspect your child has a disability, you should

• Meet with teacher and/or principal and discuss ways to assist the child
• Request in writing from the appropriate committee listed below that your child be evaluated to determine what services would be appropriate. Be sure to keep copies of all of your correspondence and notes from all meetings and phone calls.

EI: Early Intervention (birth to age 3)
CPSE: Committee on Preschool Special Education (3ס years old)
CSE: Committee on Special Education (5–21 years of age)

Setting the process in motion

1. Individual evaluations are provided by districts free of charge
2. Written consent from parents is needed.
3. Evaluation results help determine if your child has a specific learning disability or other classified weakness so that special education services or programs can be provided.

What does a comprehensive evaluation consist of?

1. Developmental history—birth, medical, family, social
2. Classroom observation
3. Other assessments—language, occupational therapy, physical therapy
4. Psychological evaluation—intellectual functioning, memory, planning, organization, attention, visual vs. auditory skills, emotional functioning
5. Educational evaluation – all academic areas, process-oriented measures that review underlying skills and abilities that may affect functional school performance

Note: IDEA04 no longer requires the district to substantiate a discrepancy between IQ and achievement as part of the learning disability identification process. Schools are encouraged to use approaches that use targeted, instructionally-relevant approaches that will assist children early and possibly avoid the need for special education.

Next steps–putting the evaluation results in place

Results of the evaluation must be provided to parents via a meeting with the evaluators, a written report that documents the test results and test scores, and a meeting with the Committee at which time all the scores and tests are explained and classification and necessary services are recommended.

Note: IDEA04 encourages the use of alternative ways of meeting, such as conference calls. The new law allows changes to the IEP without the need for the entire IEP team to reconvene for a formal meeting.

Eligibility for services

In order to be eligible for an Individual Education Plan (IEP) a child must have a disability that affects his/her ability to learn. A child must be classified in one of the following categories of disability: Autism, blindness, deafness, emotional disturbance, hearing impairment, mental retardation, multiple disabilities, orthopedic disabilities, other health impa irments, specific learning, speech/language, traumatic brain injury, or visual impairment.

Note: IDEA04 requires that states develop and implement policies that would prevent school personnel from requiring children to take prescription medication, such as those commonly prescribed for children with Attention-Deficit/Hyperacitivity Disorder (ADHD), as a condition for attending school, undergoing an evaluation for special services or receiving special services.

When appropriate, a Section 504 Accommodations Plan is suggested instead of an IEP. Section 504 is a disability law separate from IDEA and requires all agencies receiving federal funds to allow children access to educational programs and services. Any child not entitled to services through IDEA and an IEP must be considered for educational modifications under Section 504.

Individual Education Program (IEP)

The IEP must take into account the results of the evaluation, including the child's strengths and weaknesses, results of state or district wide tests, the unique needs and/or special equipment, long and short-term goals and the least restrictive environment.

Note: IDEA04 requires that short-term goals be specified only for those children with significant cognitive disabilities.

The IEP must be reviewed at least once a year. Every 3–5 years a new evaluation must be completed to determine eligibility and classification.

Note: IDEA04 authorizes a new pilot program that will allow up to 15 states to offer parents the option of a multi-year IEP, not to exceed 3 years.

The effect of the No Child Left Behind (NCLB) and IDEA04

All children with disabilities are included in the annual statewide assessments required by NCLB. IDEA04 allows states and school districts to use funds earmarked for special education to assist students who have not been found eligible for special education but who may need additional assistance to succeed in general education. IDEA04 also requires all special education teachers to be certified in special education.

What if parents don't agree with the school? Options to resolve disputes

1. Mediation—Parent and school district meet with neutral third party who tries to help them come to an agreement.
2. Due process hearing—Parent and school district present written and oral testimony of disputed issue to a judge.

Enhancing advocacy skills of parents

Parents must know when to advocate for their child and when not to step in. At times it may be preferable to let a child learn from failure. For example, a child who forgets to complete his homework, may be able to discuss and arrange a make-up assignment with the teacher on his own. However a child who forgets assignments repeatedly may need parental intervention to determine the source of the problem and ways to rectify it.

Children should be assured that their parents are their allies. Parents should openly communicate to their children that they are advocating for their educational needs.

Parents should ask, listen and answer questions about their child's concerns during this process, and create an atmosphere of respect and affection.

Parents may need to select teachers and supportive assistance agents through face-to-face meetings to discuss shared goals. It is important to document dates, long and short- term goals and other points made during the meeting.

Establish and document at least a tentative time frame for goals to be achieved, make specific plans for follow-up meetings, and obtain contact information.

Local and national advocacygroups should be supported when possible.

What can impede positive advocacy skills?

Parents should be careful not to

1. work at cross purposes and to make sure their only goal is for the educational needs of their child.
2. try to avoid giving their child different messages. The child must know that his parents believe that he will benefit from your efforts.
3. use the child's problem to take the focus off other critical unresolved family issues.
4. be intimidated by systems and authority figures.

Helping your child to self-advocate

Children should be at least eight years old and able to self-observe, self-record, self-cue, self-reinforce, and relax. Help them to learn when they are in a difficult or overwhelming situation through discussion, and provide practice in learning how to make decisions. For example, if your child recognizes that she is not understanding a classroom discussion, teach her to ask the teacher for clarification, during the lecture or after the class. Your child can also, during appropriate times, ask for peer assistance. A child that is aware of her own strengths and weaknesses can also ask for breaks, extra review materials, or advances assignments to help her overcome weaknesses in some areas. It is easier for a child to advocate for herself when she knows she will be supported by her teacher. Make your child aware that the teacher understands her needs and is there to help.

Rehearse possible situations; role-play possible scenarios (such as "what if").

Model and explain your actions.

Help children learn how to be assertive in asking for assistance and their designated assistance tools.

Help children learn when it's appropriate to be assertive and when it's not appropriate.

References

Department Office of Vocational and Educational services for Individuals with Disabilities (2002). Special Education in New York State for Children Ages 3-21: A Parents Guide The New York State Education. Albany , New York.

Horwitz, Susan (1994, December) Talking To Your Children About ADD: Teaching Children to Self Advocate. Retrieved from http://gradda.home.isp-direct.com/wi94talk.html/Gradda Newsletter/1994(Winter vol.). The Greater Rochester Attention Deficit Disorder Association Rochester, New York.

Siegal, Lawrence, M. (2004). Nolo's IEP Guide: Learning Disabilities. Nolo. Berkeley, Ca.

About The Authors

Kimberly S. Williams, M. A., a neuropsychology postdoctoral fellow at the NYU Child Study Center, evaluates children and adolescents for a wide range of learning problems, develops recommendation to accommodate their educational needs and helps parents work with the school district.

Susan Schwartz, M.A. Ed., is the Clinical Coordinator of the Institute for Learning and Academic Achievement at the NYU Child Study Center.

About the NYU Child Study Center

The New York University Child Study Center is dedicated to increasing the awareness of child and adolescent psychiatric disorders and improving the research necessary to advance the prevention, identification, and treatment of these disorders on a national scale. The Center offers expert psychiatric services for children, adolescents, young adults, and families with emphasis on early diagnosis and intervention. The Center's mission is to bridge the gap between science and practice, integrating the finest research with patient care and state-of-the-art training utilizing the resources of the New York University School of Medicine. The Child Study Center was founded in 1997 and established as the Department of Child and Adolescent Psychiatry within the NYU School of Medicine in 2006. For more information, please call us at (212) 263-6622 or visit us at www.aboutourkids.org.