As a parent of a child with an intellectual or developmental disability, you are the expert on your family, which naturally makes you the best advocate for your child! Typically, as parents, we take on the role of advocate until our children can speak for themselves. In many cases even after that time has come, our role as advocates remains. You understand your child’s strengths, weaknesses, and challenges, and can help identify the resources your child needs to succeed.

A great parent advocate gets involved and stays informed! This includes:

• understanding your child’s educational/legal rights
• knowing the facts of your child’s situation including strengths/weaknesses
• making sure to have details/accurate information, never depending on second-hand information
• creating plans that assist children in achieving goals and objectives
• empowering your child to succeed

The system can be a bit complex, but knowledge is power. As GI Joe says, “Knowing is half the battle.”  So, educate yourself! If you need assistance in understanding the Individual Program Plan (IPP), IRC appeals process, Individual Education Plan (IEP) or related legal rights, you may contact our Legal Department or Senior Trainer by using the Contact Us option on our website’s About Us section. You should also always feel free to contact your Consumer Services Coordinator (CSC) with any questions and concerns.

Another way to get involved and learn more about advocacy is by checking out the many trainings and events posted on the inlandrc.org calendar. Many of these events are hosted by IRC’s Community Engagement and Training Unit (CETU).  CETU trainings are free of charge to consumers, care providers, and parents.  A few examples of training opportunities for consumers and parents include:

• IRC New Parent Orientation
• The Consumer Advisory Committee (CAC)
• IRC Fall Festival
• Consumer Sex Ed
• How to Talk to Your Child About Sex – a parent training
• How to Advocate for Child/Yourself

More on advocating for your child! Keeping records is key. Keep detailed records when making calls to request support/services, including the date/time and who you spoke to. It is always a great idea to write down the calls and messages left with your IRC Service Coordinator or the school. Keep copies of everything you get or send to IRC or school district. When you receive your child’s IEP or IPP, review it and make sure it reflects what you requested, and most importantly, that you and your child agree with what has been written. If possible, you should send important letters to IRC or the school “Return Receipt Requested.” If you hand-deliver materials to the school, make a note of the date and time, and the person who received it.

It is extremely important that you as an advocate never rely on phone calls or casual conversation. Keep a record of any phone conversations: date, time, name and position of the person from IRC or the school district, and any decisions made.

Be Prepared! Before you schedule or attend any meeting about your child’s care, ask yourself:

• What kind of meeting is being scheduled?
• Is this an IEP meeting?
• Is this a 504 Planning meeting?
• Is this a mediation session?
• Is this an IPP with your child’s IRC Service Coordinator?
• What documentation/information do I need for the meeting?
• What outcome would my child and I like to see from this meeting?

If you’re not sure what kind of meeting you are scheduling or attending, call your CSC or school district to find out. You need to know ahead of time what will be discussed so you can prepare and gather information needed. Identify any legal requirements that relate to the meeting, such as what kind of notice you must receive, who must participate, and any timelines that apply. Then, use the meeting time effectivity. Be polite, courteous and expect the same from all those in attendance.

Finally, follow up, keep track of deadlines, and communicate with the school or your IRC Service Coordinator. You should report on progress, as well as problems. It is a great feeling as a Service Coordinator or teacher, to hear positive progress and good stories from the parents and consumers, so share them and be proud of what you and your child have accomplished.

Posted by:

Dr. CJ Cook, DBA

As Program Administrator, CJ is responsible for the proactive oversight of various units within IRC, including Community Management, Service Access and Equity, and Training and Development. CJ's oversight extends to Language Access and Cultural Competency (LACC), Community-Based Organizations (CBOs), equity in the Purchase of Service (POS), and the National Core Indicator (NCI) project. Furthermore, CJ is tasked with managing the IRC's Performance Contract with DDS and overseeing Emergency Services.