What to Do After a Special Needs Diagnosis
Your child has been diagnosed with a developmental disability. Suddenly, your family feels off course, without a roadmap. What steps should you take?
Immediately after a diagnosis “your child is still the same kid he was yesterday. You just have this new information,” reminds parent advocate Linda Cortese, who has navigated the special education system with her son.
“First, take a breath and trust you will find your way,” recommends Melissa Bilash, founder of Advocacy and Consulting for Education in Wayne, PA. “Do your research; learn about the disability,” adds Lisa Ford, director of the Family Institute of The Arc of New Jersey in North Brunswick.
Agencies such as the Parent Information Center of Delaware, Inc., provide excellent training, workshops, one-to-one consultation and advocacy, according to Terry Olson, executive director of The Arc of Delaware in Wilmington.
You may need to find experts such as a neuropsychologist or developmental pediatrician. “You want providers who will observe your child at school and/or attend meetings,” counsels Bilash.
Get in touch
“It’s helpful to share information with your child’s school as soon as you receive the diagnosis so your child can start receiving the supports and services she needs to succeed in the classroom,” advises Ford.
“Communicate about your child’s needs in writing in the event there’s any confusion or conflict,” recommends Cortese.
Formulate a plan
Public schools must provide a free, appropriate public education to each qualified student with a disability.
In addition, the U.S. Department of Education requires that “each public school child who receives special education and related services must have an Individualized Education Program.” An IEP must be a truly individualized document. Per the DoED, “the IEP creates an opportunity for teachers, parents, school administrators, related services personnel and students (when appropriate) to work together to improve educational results for children with disabilities.”
Your child may be eligible for different types of services under a 504 plan, depending on the disability. “A 504 plan asks what the student needs medically. An IEP asks what the student needs in order to access his or her education,” explains Bilash.
See page 2 for more steps to assist in the IEP process.
Don’t go it alone
“Bring someone with you to an IEP meeting,” suggests Bilash.
Cortese hired an advocate because she and her husband wanted an expert to help them advocate for their son.
“Hook up with an agency,” advises Ford. “It’s much easier to navigate the system when you have support.”
Implement the plan
“An IEP will have specific needs identified, which should be accurate and current,” notes Bilash.
“A good plan has ‘SMART’ goals,” adds Cortese: “Specific, measurable, attainable, realistic and time-related.”
Call a meeting if the district is not implementing your child’s 504 plan or IEP. Bilash says, “Share your concerns and try to have a data-based conversation. If you are not satisfied with the outcome, consider all options, including a facilitated IEP meeting, and, if needed, mediation, due process or a state complaint.”
Stay involved and informed
“Maintain active communication and involvement with your child’s teacher and any support staff,” says Olson.
“Teachers, administrators, support staff and therapists are typically really good people who genuinely care about kids,” says Cortese. Therefore, “any communication should begin with appreciation for their hard work, followed by a request for information.”
Stacy Heenan Biscardi is a freelance writer and MomSpeak blogger for MetroKids.