Never Take No for an Answer: Advocating for the Services Your Child Needs
One of the earliest lessons you learn when you parent a child with special needs is that you will hear "no" more often than a toddler. But being the grown up and the advocate for your child means that you can't just stick your fingers in your ears. Instead, you have to keep negotiating until the "no" becomes a "yes."
In a perfect world your child wouldn't need extra medical equipment, therapies, or accommodations in school. And in the perfect world, if your child does need something out of the ordinary or even extraordinary, everyone gets on board to provide your child with all of the scaffolding for success.
Back in the real world, however, it's more likely that you'll find yourself reading a letter from your insurance company denying your child's wheelchair (or speech therapy or portable oxygen). And at that moment, says Renee Turchi, MD, MPH, Medical Director, Special Programs at St. Christopher's Hospital for Children in Philadelphia, it's important to remember that "there's not just one path" to get you where you need to go. When an insurance company denies your child equipment or services, you can:
Appeal the decision. Together with your doctor, write a letter of medical necessity. Dr. Turchi advises asking your doctor if he's had success working with your insurance company in similar cases. The practice may have contacts at the insurance company or know the proper phrasing or language to use when submitting claims.
Schedule a conference call. Sometimes a higher-level appeal entails a sit-down meeting with the insurance company. Ask if someone from your practice can be on the phone or even attend the meeting in person. "Parents can articulate their children's needs perfectly," says Dr. Turchi. "But I've seen that my presence on the phone or in person can give the parent's request more credibility," she says.
Learn the law. If you know the law and can quote it to an insurance company representative your battle can be much easier. Every state has organizations dedicated to helping families with special needs and Dr. Turchi says one of their strengths is that they know and understand exactly what the law provides. Another excellent resource is connecting with other parents. "They've done this and they are a great source of information," she says.
Battling for services in your child's school can be exhausting and stressful. You might spend weeks prepping for your child's Individualized Education Plan (IEP), only to walk into the meeting and be told that the school "can't possibly" offer a service or accommodation your child needs to succeed - then what?
Know the goal. Many parents approach the IEP as the place where a child's services for the coming year are set. But changing your thinking a bit can make a big difference in the way your conversation with the school goes, says David Riley, Ph.D, executive director of the Urban Special Education Leadership Collaborative in Newton, MA.
"The purpose of the IDEA (Individuals with Disabilities Education Act) is 'to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living...'" So parents should get into the habit of asking the school to show how the plan for the current year leads the child toward further education, employment, and independent living.
Get it in writing. When a member of the IEP team says a service can't be provided, ask them to put the reason for the denial in writing, says Pam Lindemann, a parent advocate in Orlando, FL. "You have that right under IDEA. I often slide a piece of paper across the table at the meeting," she says. "When you ask for explanations in writing, things may suddenly change."
Ask for a recess. You don't have to sign anything at the end of the IEP meeting. You can tell the team you'd like a recess and use that time to think about things, consult with an expert, research the law, or do anything else, says Pam. "Just tell the school, 'I'm not ready to sign this right now," and set a date to reconvene. The school is still obligated to provide services while you recess.
Advocating for your child is hard work. But the payoff - getting your child the services he or she needs - is more rewarding than just about anything else.
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