Finding individualized education for your child

Posted by Reeve Staff in Daily Dose on August 04, 2017 # Mobility, Caregiving

August is the month we cram the joy of the last days of summer while preparing for another school year in a whirlwind of errands, school supply shopping, and unfinished school projects. For parents of children living with paralysis, it's also the time to dust off our child's individualized educational plans (IEP). Whether this is your first year dealing with the special education system or you are a veteran, we gathered tips and suggestions to start the school year on the right foot.

First, what is Special Education?

If your child's diagnosis or injury occurred during the summer break, you may feel intimidated by the process and bureaucracy of the special education system. In essence, special education provides instruction for children with disabilities that meet the child's individual needs and allow them to receive a free and appropriate public education. A child with disabilities can access special education from birth to age 21 through the Early Intervention Program (birth to age 3) and your local school district (age 3 to 21). For a breakdown of each program, to learn more about special education, and access resources please see our Education for Children Living with Paralysis site or download our Education for People with Disabilities fact sheet.

Following the law

There are three laws that affect special education: The Individuals with Disabilities Education Act (IDEA), Section 504 of the Rehabilitation Act (Section 504), and the Americans with Disabilities Act (ADA). These 3 laws allow children to avoid discrimination in school and receive a free appropriate public education (FAPE) in the least restrictive environment (LRE). It is also important to remember that each state has their own rules to implement and clarify these laws. provides a section on children's rights that can help parents navigate this tricky and sometimes confusing system.

Some parents, especially those who expect a push back from their school districts, believe that having a printed copy of these laws available to read, highlight, and bring with them to their school meetings is a powerful tool to effectively advocate for their child's rights. While IDEA Part B may be the most relevant to parents,Section 504 and ADA could also be useful. To find information on all the laws affecting special education, I recommend you to visit the Laws & Guidance section of the US Department of Education site.

Now that we covered the basics, I leave you with tips for whichever stage of life or process your child may be.

First, the golden rules of Special Education…

  • Document everything. Every phone conversation, letters sent or received, assessments made, and appointment notices need to be documented and properly stored. Parents usually keep a binder and a file cabinet to keep orderly track of their child's paperwork. This will allow you to check on timelines for implementation of services, find documentation to back your claims to the Child Study Team and provide evidence during mediation or appeals.
  • Remember this: your child has the right to a free appropriate, public education. This means that the education should be tailored to your child's needs while providing access to the general school curriculum as appropriate to him.

  • What to do when your infant has paralysis…

  • You do not need a referral from your doctor or a diagnosis. You can contact Early Intervention (EI) yourself as soon as you have concerns about your baby's mobility or development.
  • This Early Intervention Contacts site has a list of E.I. referral phone numbers for each state.
  • You can receive therapy through E.I. and through other medical professionals at the same time. If you do, it's a good idea to keep all therapists informed of each other's therapy plans and objectives.
  • In addition to your case manager, you may request a social worker through Early Intervention. This professional can help you with short-term family counseling or by referring and/or helping you navigate a program or service for your child outside the E.I. program.
  • E.I. is a "family center, activity based" model. Make sure to actively participate in all your child's sessions, ask questions, model therapy routines, and follow through in between sessions.
  • A successful transition from Early Intervention to Preschool requires time and preparation. Request a transition meeting at least 3 months before your child's third birthday or sooner if his or her birthday falls during summer vacation. To learn more about transitions see this quick and useful fact sheet from the Pacer Center.
  • If your child is close to their third birthday and you would like assistance with the transition to preschool, you can request an E.I. evaluation and transition assistance. Remember, by law, the Early Intervention Program must assist all children until their third birthday.

  • Do your research…

  • Talk to other parents in your school district/ neighborhood. They are a great resource to learn about the usual policies of special education in your school district, what's worked for them in the past, how to approach the administration for a special request, etc.
  • If age appropriate, talk to your child about his experiences in school (was he comfortable with his therapist? Did they feel rushed during sessions? Did the teachers allow the accommodations in his or her IEP?) Write down the relevant comments to share with the Child Study Team (CST).
  • You are allowed to present evaluations from independent healthcare professionals during your child's Individualized Educational Plan (IEP) meeting. Such evaluations include privately paid therapy assessments, rehabilitation discharge papers, doctors’ records (physiatrist, neurologist, development pediatrician). These evaluations should be considered during the IEP meeting.
  • If you anticipate a difficult meeting, research and inform yourself about special education advocates or lawyers. (See below for details)

  • On seeking for the mythical ideal classroom…

  • There is such a thing as the ideal classroom for your child. The process takes time--make sure to give yourself several weeks before the IEP meeting to prepare.
  • Learn this phrase: least restrictive environment, and make it your mantra. This is your child's right under IDEA, ADA, and Section 504. If you are seeking an inclusive or a regular classroom setting, it is important to emphasize this right to your Child Study Team. This is especially relevant for children with mobility impairments without a developmental delay.
  • Visiting schools is crucial for the ideal placement. Make sure to request visits to in-district and out- of-district schools, if appropriate, from your CST several weeks prior to the IEP meeting.
  • While visiting the schools, keep a notebook for notes or use a questionnaire to help you identify the pros and cons of each school. Check the MAAPS Checklist for Parents, this Special Education School Visit Checklist, and this Choosing Schools article for reference.
  • While visiting the schools, check for accessibility roadblocks and evaluate the school's willingness to problem solve them.
  • Make sure to consider the medical care your child will need during school hours. If your child will need assistance with his or her bladder or bowel programs, taking medications, or may have complications such as seizures or autonomic dysreflexia (AD), it is extremely important to meet with the school's nurse and request a health care plan within this IEP or 504 Plan.

  • By Patricia Correa. Patricia has worked in the Early Intervention System for over 6 years and is the mother of a child living with a disability. She is an Information Specialist at the Paralysis Resource Center.

    The National Paralysis Resource Center website is supported by the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS) as part of a financial assistance award totaling $8,700,000 with 100 percent funding by ACL/HHS. The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by ACL/HHS, or the U.S. Government.