Become an Exceptional Needs Advocate: Be Your Own Child’s Voice
Updated: Jun 2
By Karen Kaplan, MS
I hear the following statements so often: "I need an attorney." "I need an advocate." "I need help with an educational planning meeting or transition meeting." "I don’t know how to do this." "I get anxious and nervous...I am intimidated." "I cannot do it all."
I believe parents, grandparents, and care providers CAN DO IT. In fact, when you are empowered, you are the ideal voice for your loved one because you know them best and will be part of their life longer than anyone else. I know your voice can be powerful and meaningful. You can grow your knowledge, ask for clarity, ask for support, and ensure rights. You are an equal and critical member of the team.
Yes, you need knowledge. Yes, you need experience. You need to move through fear, understand that everyone is anxious in these meetings, and should practice asking for what is needed and deserved. The mantra in your mind and heart could be, if I do not ask, the answer will always be NO.
So, I say, stop waiting. Stop procrastinating. Take small steps to become your loved one’s advocate.
Here is my advice. Purchase a large three-ring binder and dividers. You might put their name and birth date on the front with a by-line, like “Nurturing Independence.”
Ensure your individual has been effectively diagnosed (development pediatrician, neurologist, psychologist, speech therapist, occupational therapist, physical therapist). Medical insurance can pay for some. School districts will be required to complete them under the Federal Law, Individual Education Disability Act (IDEA), but you will have to put in writing and sign assessment documents to get this all completed.
Make sure all assessments have been explained to you in person. Ask, ask, ask as many questions as possible. No question is stupid. Make sure you request that all words unfamiliar to you be explained. Do not feel intimated by a professional.
Put all assessments in the assessment section of that BIG BINDER. Take your yellow marker out and underline key challenges to be addressed in your education program, by therapists, and in the home. Keep all Individualized Education Program (IEP) and Individual Transition Planning (ITP) meeting documents in the binder by date. Keep all progress reports in the binder by date as well.
Identify other parents, and find parent support networks living with and supporting children like yours. Examples: (https://www.matrixparents.org Parents Helping Parents ParentsCAN - Help for parents of children with disabilities in Napa County, Autism Source - (autismsociety.org), Home - Support for Families, Home - Dedication to Special Education. Today, many Facebook Pages of parent networks share resources, ideas, and encouragement.
Do not be intimated by the Educational Systems in place for your individual’s rights. Go online and educate yourself in the Educational Code for the IEP, ITP, or 504 Plan. About IDEA - Individuals with Disabilities Education Act, Individuals With Disabilities Education Act (IDEA) (verywellfamily.com), A Guide to the 504 Plan for Students With Disabilities (verywellfamily.com) A Transition Guide to Postsecondary Education and Employment for Students and Youth with Disabilities. Revised August 2020. (PDF)
Ensure you read every progress report districts must send 2 to 3 times a year reporting progress toward goals identified within the education plan. If goals are not being met, please use your voice to ask why. What changes will be made to help your individual make progress (other than time)? Perhaps the goals were not meaningful. Perhaps materials must change. Perhaps the approach needs to be different.
Your state might have the Regional Center System, which supports those with special needs at home, after school, camps, behavior supports, and more. Check them out, and find out how to apply for supports. Regional Centers - CA Department of Developmental Services. Remember to make sure YOU invite your caseworker to each ITP meeting with the school district. They connect you with adult supports and resources.
Check into United Cerebral Palsy How to Contact Us - United Cerebral Palsy (ucp.org) and The ARC The Arc | For People With Intellectual & Developmental Disabilities. They may have additional supports that a school system may not be able to offer or parent connections or put on free workshops to help you become your individual’s best voice.
Connect with your teacher and therapists consistently. Ask to observe school and sessions. Ask to be taught how to apply all strategies.
Make sure when you sign IEP supports and services that there are also consultation goals on the plan for the teacher and therapist, the therapist and instructional aide, and with you. Generalization occurs when everyone in every environment is part of the team and learning.
When there are behavior challenges at school, ensure therapists are involved, not just the teacher or behaviorist. Remember that challenges occur when your individual does not understand communications, directions, and commands and has poor motor planning and sensory regulation (speech and occupational therapists). When they are frustrated, confused, and anxious (psychologist), those issues must be addressed and supported.
It may be necessary to check in with a legal advisor. Have them mentor you. Have them teach you how to voice concerns professionally and legally.
It’s easy to get overwhelmed in educational planning meetings. Remember, you have a right to record the session; just be sure to give 48-hour notice of the request (in writing). Let them know you are often distracted and may need to refer to the recording at home before signing anything. You may need to have your spouse review it as well.
You can be a powerful voice that reflects a knowledgeable part of the team. You can question statements such as “That will not work” or “We cannot do that” and ask, “Have you tried this,” “Will you try,” or “What will you do that is different?” If your individual is not receiving a program of benefit and is not making progress (progress reports), then you have a right to ask the district to place the child in a program that does. You have a right to suggest supports and services that need to be included for effective progress to be made.
YOU CAN BECOME YOUR INDIVIDUAL’S VOICE.
Karen Kaplan, MS, is a native San Franciscan. She completed her bachelor's and master's degrees at Arizona State University, Tempe, Arizona, in Speech Pathology and Audiology. She minored in Special Education and obtained her Speech Therapist and Special Education credentials in California. Karen worked as a speech therapist for both public schools and private schools for 20 years before opening her own residential and education program for students with autism spectrum disorders. She worked in credential programs at Sacramento State University as well as UC Davis and spent 20 additional years directing private schools for those with autism and similar learning challenges. Karan founded a small non-profit, Offerings, which travels globally helping other cultures understand those with developmental challenges. For seven years, she founded and facilitated an autism lecture series and resource fair in Northern California. Karen still facilitates an Autism Awesomeness event yearly, showcasing the strengths and talents of those who live on the spectrum. She is currently consulting, helping families, schools, and centers for children, teens, and adults. She has published articles to help bring ideas and strategies to families and professionals, providing hope. Karen authored Reach Me Teach Me in the early 70s and went on to publish her second book, On the Yellow Brick Road Finding Hope for Autism, in 2017. Her third book, Typing to Heaven and Back, is not about autism but about having important conversations with those we love. Be sure to connect with Karen—she is always ready to listen and think of the possibilities.