Advocating for your special needs child: 3 tips for success in the CSE meeting

Bring support, document everything in writing and know what you want.

That’s the advice dispensed by Danielle Brooks of Special Kids Advocates, who presented a workshop on advocacy for parents of special needs children at this month’s Riverhead SEPTA meeting.

Brooks’ presentation focused on building a foundation for successful communication between parents, advocates and the school district and centered on those three important tips.

Never go alone: No matter how educated, prepared or determined a parent may feel before walking into a CSE (Committe for Special Education) meeting, once walking through that door, parents are at risk for becoming side-tracked by their emotions. Having another person there who is less biased and able to keep the focus on track can make all the difference in a successful outcome.

Document everything in writing: It goes without saying that it is important to keep all emails, letters and school documentation, what is easy to forget is that it is also important to write down the date, time and details of all non-written conversations. Keep all records organized and in an easily accessible place. For some parents that place is digital and for others it is paper. When organizing paperwork it is recommended that an organizational system is put into place. For example, color code different topics (i.e. IEP and School documents one color, medical documentation another, sample classwork, grades, teacher communication another.)

Know what you’re negotiating for: What is it that you are asking for? Remember that the CSE is a negotiation and when negotiating, it is imperative that you know what outcome is desired. Ask yourself three questions: Does the service exist in your school district? Can you show the need for the service? Is there more data that needs to be collected?

When preparing for the CSE meeting, it is important to make sure that all of the pertinent information is organized and concise, Brooks said. At the beginning of the CSE meeting, parents are generally asked to go over what they see going on and feel is important. This is often called a “Parent Statement.” However it can be emotional and parents frequently find themselves off-topic and risk losing their audience. One suggestion is to write down the parent statement before the meeting and give it to the committee at the beginning of the meeting. When creating the statement remember to keep it concise, Brooks said.

“Condense, target and be precise” Brooks advised. Don’t write a narrative, but instead condense information into bullet points. Focus only on the current school year, not on years past, she said.

Brooks recommended parents begin their journey by familiarizing themselves with Wrightslaw, an advocacy website. http://www.wrightslaw.com/ She also urges every parent to read the Wrightslaw book “From Emotions to Advocacy.”

Another piece of the puzzle is the student’s perspective, Brooks said., often refered to as self-determination. It is important to involve the child in understanding their needs and giving them the tools to advocate for themselves. Every child’s ability to participate in this process is different, depending on the child’s cognitive ability and emotional readiness, she said. Typically, a child is introduced to the process at approximately ages 10 or 11 years old with the goal of managing their own IEP in high school. In order for successful self-determination, a child needs to understand their disability and know what they need, Brooks said. Then, they need to learn how to advocate for themselves.

Brooks brought her 17-year-old son Jonathan to the workshop. Jonathan has Asperger’s Syndrome, which is on the Autism Spectrum, as well as a number of other disorders. Jonathan began learning to advocate for himself when he was 11, his mother said. Currently, he is the primary driver in his CSE negotiations. He is fully aware and able to understand his needs and advocate for the “goals” and “services” to be set during the CSE meeting, Brooks said.

Jonathan also accompanies his mother during workshops and speaks to attendees about his experiences. He speaks to children and helps to educate others in this process.

The final part of the workshop discussed transition. This process, transitioning between school and post-high school is an extremely important process and should begin two years prior to the student’s graduation.

For more information about Special Kids Advocate Agency visit their website: http://www.danletteagency.com/index.html or facebook page: https://www.facebook.com/Specialkidsadvocatesagency

Other Parent Resources:
Read the procedural safeguards: http://www.p12.nysed.gov/specialed/publications/psgn1211.htm
http://www.understood.com – Free Webinars
http://www.parentside.com – Parent’s perspective, humor
Wrightslaw: http://www.wrightslaw.com/
i’m determined: http://www.imdetermined.org/ a Virginia Department of Education website
NYSED (New York State Special Education): http://www.nysed.gov