Parent Panel Summary
1st Parent Panel Assignment
The Design Team compiled and reviewed notes taken from parent focus groups conducted in October 2010 and survey results from the Parents Research Panel collected in February 2011. After analyzing and synthesizing all collected data the Design Team found common themes among parents. The major themes, with quotes cited from parents, are outlined below:
Parents had mixed experiences with professionals, teachers and principals, in the educational system.- “Sometimes the challenge for us as parents comes when the professionals don't truly listen to all the things we are saying about our child. They forget to see the child. All they see is the diagnosis.”
- “Through the years of working through the system, I have been very blessed to get cooperation within the educational realm. However, it has taken a great deal of research on my part to know what to ask for and then to figure the best route to achieve that goal.”
- “The earlier they receive the diagnosis, the sooner the parents are able to seek resources and get help.”
- “For my family, understanding what was wrong with my child was a major hurdle. The quicker we knew what was wrong, the sooner we could get the help to help our child. Hopefully early intervention would make the outcome better for all children with disabilities.”
- “The most important reason for receiving a diagnosis early is for the parent to go through the grieving process. The same 7 stages apply to parents as it does with grieving the loss of a loved one. Your world just stopped and everything changed. Every parent is different, with respect to how long it takes him or her to move past the diagnosis.”
- “The models that are out there (for autism) are mainly for boys, I have a daughter.”
- “The disability system (whether it be special education, medical, state services, etc...) is the most fragmented system out there. In addition, there are too many gray areas that are up for interpretation by the professional.”
- “I have spent hours and hours looking for detailed information about my sons diagnoses. Many times just finding a relevant website can be a big challenge. I have had the dream of a place where we as parents can come and find answers and direction to our questions.”
- “I wish I had known how the system worked ahead of time. A flow chart, something that says what a referral is and how long it will take and how to know if your child is eligible {for special services} and there is going to be an IEP.”
- “We need a manual for parents including all materials.”
- “A one-stop-shop for resources. Again, because it is so fragmented, there are scores of organizations that provide similar services and it is usually hard to even find them.”
Parents wanted to have a brief and simple overview of federal state and local policies including a commentary in simple English.
- “Give me all that legal stuff with an explanation (in English) so we’re not recreating the wheel and so I can explain it to a teacher in a non-confrontational way.”
Parents who are non-native speakers of English face additional challenges in finding resources for their children.
- “There is a definite language barrier, I recently had a long conversation with a Spanish-speaking parent who doesn’t know what her options are or where to turn”
- “English as a second language children are not getting any services. Parents are not aware of the services that are available.”
- “Not all children come from families where English is their primary language. Those parents need to have understandable information available to them as well.”