At the parent group today one of the mothers celebrated that after four years her daughter finally had a lap top at school.
To a lot of people it would seem incredible that a child in chronic pain would have to wait that long. There are resources out there but it can take a huge effort if you don’t have the right words on the right bit of paper for the right person.
In this case the process for change followed these steps;
- The child had an assessment by her specialist.
- He wrote a letter to the school outlining the child’s condition and the effect this condition would have on her.
- The specialist wrote a referral for a private occupational therapist to visit the school and make an assessment of the school environment.
- The occupational therapist then produced a report for the school on the changes that needed to be made for the student to fully participate.
The school explained to the family that once the school has the report it must act on it immediately. Apparently there is considerable accountability to Disability Services once such a document is tabled.
In this case all the efforts to lobby the school for extra support had not been effective. It was not until the family asked the specialist to assist that action was finally taken.
The assistance children can access depends on many factors-
- The time and energy parents have to knock on doors and ask for questions. (Are both parents working full time?)
- Access to a specialist with a willingness to assist. (Do families understand that their specialist can help? Is that person approachable and helpful on this practical level.)
- The attitude and internal resources of the school. (Some schools have experienced caring staff who will help.)
- Resources within disability services in that particular area.
If your child needs extra resources at school you might try the process described above.
My husband also recommends writing a letter to the school Principal describing your child’s needs and asking what you need to do to access the available resources – from the school and any related government agencies.
I’d be interested to hear how you have tackled it and what your experience has been.
PS. We had a lap top provided for our daughter by the Centre for Inclusive Schooling. We found these people difficult to deal with. Once it was too difficult for my daughter to attend school we transferred to School of Distance Education. Our daughter continued her education from home. The Centre for Inclusive Schooling then asked for the laptop back. Apparently she could only have a lap top if she went to a day school. Good one guys!
I’ve gone through the school with two kids. My oldest for developmental delay and speech problems, my youngest for autism. I haven’t had an issue thankfully. I am now having to recall the IEP for her new diagnosis of Hypermobility Syndrome. This includes getting an OT and Physio evauation as well as adding restrictions to her IEP and permanantly allowing for pain meds at school. We have been sending medication to school due to her high fevers anyway, but this will cement her being allowed it. It’s going to take 2 months or so to get all of the evaluations done. I would like to add more things in but I’m not sure they will allow it.
Hi Amy, Thanks for your comment describing the processes you have in place for your children. I am so happy to hear that it is working well for you. These things do take time to set up and they do need to be adjusted as circumstances change. What is important is that if you chip away at it and learn the system you can get the resources in place that help your children be able to attend school. Please get in touch again if there is anything that you have learnt that you would like to pass on to other parents.
Thanks
Julia