Written for Exceptional Parent Magazine
By Pamela Girvin Hackett, MPT – Managing Partner, Pediatric Therapeutic Services, Inc.
As a pediatric specialist and co-owner of a large therapy services company, parents of children with disabilities often ask me, “How do I approach my child’s IEP (individualized education program) team so that my child gets what is needed?” Too often, parents come with negative expectations about the intentions of the teachers and administrators who are proposing an education plan for their son or daughter. In preparation, they arm themselves with advocates, lawyers, and a myriad of outside evaluations in preparation for the “battle” ahead.
In my 15 years working with the special education system, it has been exceedingly rare that I have come across professionals who do not genuinely want the very best for the children they serve. In today’s world of shrinking budgets, increasing demand for services, and a shortage of qualified pediatric specialists, the current climate of opposition between parents and IEP teams is creating a lose-lose situation for everyone except attorneys, who may profit from special education litigation. On a global scale, this results in less and less special education dollars available to help students as school districts pour hundreds of thousands of dollars into defending against due process lawsuits. The majority of families and students, who are not involved in the litigation, are left with far less resources available to meet their own special education needs. Alternatively, when families and IEP teams work collaboratively, the possibilities for programming and potential are limitless and valuable special education dollars go to the kids, where they belong.
The key to being a highly effective advocate for your child is to use the special education process to build positive, respect-based relationships with the individuals working with your child. The old adage that you attract more bees with honey is as true as ever.
Know the Law
Much of the conflict that occurs between parents and IEP teams is based on a misunderstanding of what school-based services are all about. Very often, the school’s actual legal obligations, based on state and federal mandates, are quite different from what parents can expect from the “medical” care system. A second area of confusion stems from the transition process between early childhood services (for children aged 0-3) and pre-school/school-age programming, where the goal of services shifts from home and family support to an education-based model. In early childhood, children qualify for services based on where their skills fall on standardized developmental tests and are considered eligible if they test below a specified percent delay or if they present with a diagnosed disability that typically causes delays, such as Down’s syndrome or autism. This changes when children reach school age. At that point, standardized testing is still performed, but the determining factor is based upon whether or not a child is sufficiently impaired that he needs support services in order to access his education. By understanding the purpose of special education law as it relates to your child receiving services, you can advocate more effectively for appropriate supports.
The School-Age Child: IDEA ’97 and Section 504
The landmark federal education legislation, IDEA ’97 (Individuals with Disabilities Education Act), says that students with disabilities who need specially designed instruction to succeed in school are entitled to a free, appropriate, public education. (IDEA underwent an amendment process in 2004.) Another federal law, referred to as Section 504 of the Rehabilitation Act, guarantees that students with disabilities will not be discriminated against in school. These two laws represent a national commitment to education that supports the individual needs of each child and that is provided in the least restrictive, or most typical, environment possible.
In preparing for your child’s IEP team meeting, it is important to consider how the services you are requesting are specifically tied to your child’s ability to succeed in the classroom. Therapy services, as well as other supports, when provided in the school setting, are implemented based on the existence of measurable, education-based goals related directly to your child’s ability to function at school.
For example, at one of the schools that my company serves, there was a boy who had a prosthetic leg, due to the loss of his limb in an accident. He was able to run, walk, climb stairs, and even play basketball—so well, in fact, that no one at the school knew he had prosthesis until a strap broke, and his prosthesis accidentally fell off on the playground. The teachers were understandably shocked to see a leg resting quietly in the middle of the basketball court and put in a referral for physical therapy (PT) that afternoon. It was determined that even though this child had sustained a potentially life-altering injury, he was functioning beautifully in his school, and there was no observable impact on his ability to learn. Consequently, there was no need for physical therapy. While this child may have some periodic need for medical follow-up for new prostheses, skin care, and bone growth issues, those medical needs fall outside of the domain of education. Therefore, the school would not be legally required to provide PT to address those needs.
Alternatively, a child with Down’s syndrome, who experiences muscle weakness and poor coordination which makes getting up and down the stairs and sitting at circle time a physical challenge is eligible for physical therapy because he needs to be able to do those things to move around the building and participate in class.
By keeping the true purpose of school-based services in perspective, you can more effectively communicate your child’s needs in a way that respects the inherent boundaries that special educators must observe. Equally important, you can channel requests for services to the appropriate party.
Be a Team Member
No one knows your child as well as you do. The insight that you bring to an IEP team is invaluable, providing a three dimensional view of your child that enables the development of a truly “individualized” plan. The great thing about the IEP process is that it provides a wide range of perspectives, as each person brings a piece of the puzzle to get a complete picture of a student’s strengths and needs. You will have the opportunity to find out where your child is relative to his or her peers in a number of areas.
During the evaluation process and the development of an IEP, the person developing these documents should ask for your input. Feel free to share things that you know are particularly helpful for your child, as well as areas that are particularly challenging. If you have additional information, such as medical records or outside evaluations, be sure to provide them to the team so that this information can be taken into account. Similarly, if there are things that really motivate your child, share them with the team. This insight can greatly accelerate the progress that your child makes. For example, one of the occupational therapists (OT) with whom I work was treating a boy with severe attention issues. He was not able to finish an activity without repeated cueing to stay on task. His mom shared with the OT how much he loved Pirates of the Caribbean, so the therapist started doing handwriting activities about pirates by, for example, having the child dig for treasure in therapy putty to earn the “prize” of gold-covered chocolate coins. Suddenly, the child who had literally been running out of the therapy room was asking if they could play just one more game.
A frequent point of contention between parents and the IEP team is the amount of services a child should receive. When it comes to therapeutic and special education supports, people often assume that more is better. But keep in mind that it’s important to balance your child’s entire educational experience. For example, it may not make sense for a child who is 15 years old to be pulled out of a core academic subject to work on handwriting. Try to work with your team to keep the focus on the “big picture.” Encourage your team to find ways to carry over therapeutic strategies and activities into the overall academic program so that progress is not dependent up on a 30-minute treatment session once per week. Not only will your child likely make progress faster, but will also have a better attitude throughout the process.
When to Bring in Reinforcements
In my many years of experience working with IEP teams, I have found that it is generally best to attend your initial team meeting without an attorney or advocate, as their presence causes the process to begin with all parties in a defensive posture, limiting open dialogue and creative problem solving. Like all people, your IEP team members have the tendency to rise and fall with your own expectations, so try to let them know that you expect the best from them. If you have questions or concerns that the members of your IEP team are not able to answer, don’t hesitate to look elsewhere for input and information. The school district should provide you with contact information for the department of education in your state so that you can get an independent, outside opinion.
In the event that you are not able to come to an agreement with your child’s team, it may be necessary to bring in outside support. When choosing someone to assist you in advocating for your child, always look for someone who is respected for their expertise and credentials, not for their reputation as a fierce opponent. A good advocate provides additional input to your child’s program that brings clarity, not contention.
There are times when this process can become very emotionally charged. However, keeping your cool and keeping communication positive and respectful is one of the best ways to ensure a successful outcome. Do your part to ensure that your son or daughter’s situation doesn’t become notorious for being riddled with angst and adversity. The most talented educators and therapists are often “scared off” by situations in which their actions will routinely be under a microscope, regardless of their professionalism and good intentions. Over the years, we have seen more than one child go without services because her “high profile” status caused the most talented therapists and educators to keep their distance. Even the most confident and dedicated clinicians are sometimes unwilling to take on the complexity and exposure of being drawn into a potential battle.
Keep your Eyes on the Prize
Seeing your child progress is the reward for working together to put an IEP in place that is truly effective. Open communication, working toward shared goals, and a willingness to “tweak” things when a child is not moving forward as quickly as expected are the hallmarks of a successful IEP team. I have been privileged to work with some of the most gifted, child-focused professionals imaginable. No one goes into special education in search of fame and fortune. No matter how challenging the process becomes, try to remember that everyone at the table has given their lives to helping children with disabilities, including you.
Pamela G. Hackett, MPT is a managing partner of Pediatric Therapeutic Services, Inc., a company providing advanced therapy staffing solutions to school districts, charter schools, and early intervention programs. To learn more, visit www.pts-inc.net.
© Copyright 2009 by EP Global Communications