I read an interesting blog article today that fits with the topic of parent advocacy I have been sharing lately. The blog can be found at wickedlocal.com under the education news section. The link is HERE. To summarize the issue, a Hispanic mother is concerned about the slow process in aqquiring one on one assistance for her daughter who has West Syndrome. West syndrome, also known as infantile spasms, is a rare and serious form of epilepsy in infants. The mother has limited English proficiency and is trying to advocate for her daughter in spite of difficulties getting translations and proper support for communication.
I see two issues here: The first is on the time factor in getting evaluations, recommendations and approvals for services and equipment for children in special education. The process of networking, collecting data and meeting with teams is huge. Sometimes it takes 3 - 6 months just to get through meetings, evaluations and team planning sessions. This can include trials of AT equpment to see what is working. If something doesn't work, it is back to the process of a new trial with a new device. Money is a huge factor, and even though federal law mandates it, federal law doesn't fund all of it. Finding money to do everything a school district needs to do is stretching.
I had a conversation with a school district special education director yesterday, and another one today where we are looking at AT equipment to support kids. Both administrators were very supportive of purchasing what was needed and they both are using local foundation and trust money to help in the purchase price for high price-tag items.
The second issue deals with providing spanish versions of IEP's and documents as well as providing a translator for meetings. We have a large Hispanic population in several of our districts. We strive to provide translators for meetings and our ESD has several on-staff translators who convert documents and reports into spanish.
I would encourage you to go read the article on the link above. Take some time to read the comments at the bottom. There is a mix of everything from racist pre-conceived notions of the Hispanic community, administrator perspectives, hispanic perspectives and special educator perspectives. It is pretty eye-opening.
I don't have the answers to these issues, but I believe that when parents are in situations where they see their child on a mat on the floor in class all day, it is time to get active in the area of advocacy. Use the principles we have been sharing in previous posts to find out what is happening, where things are in the process and be positive as a part of the solution - not adding to the problem.
I thought it was interesting that the mother had only good things to say about the staff and teachers who were with her daughter. She had a very positive attitude toward the school, it was the system that she was having issues with. The system is still made up of a lot of people who care about kids, and I am so blessed to be able to say that in my area of Oregon, we have people who think ourside the box to get what kids need. I hope you are somewhere where there is support like that for you too.
All the best to you!
If you know of someone who could benefit from this post or this blog in general please refer it on to them.
Image credit: http://www.wickedlocal.com/roslindale/news/education/x288018531