This morning, I attended the program on “Epilepsy – an orphan disorder in the intellectual disability and neurodevelopmental family.” I wanted to hear the discussion on the topic because through my work as a PCA and a developmental specialist aide at Riverside, I have worked with many clients who have epilepsy in addition to their primary disabilities and was hoping to learn more on the topic and gain insight on how to give the best care to people with this condition.
The first presenter Paula McGowan presented “Oliver’s Story”, which was about her son who had a mild form of ASD and occasional seizures due to epilepsy. Paula shared a powerful story and explained how in 2016, Oliver was given antipsychotic medication for a cluster of seizures and as a result of the medication experienced brain swelling so severe that he later passed away. Oliver’s previous doctors had provided documentation that these drugs should not be given to Oliver because of their adverse effect and both Oliver and his family had communicated with the new hospital that they did not consent to this plan of care.
Paula’s story illustrates how important it is for healthcare workers to be specially trained in the treatment and care of people with intellectual disabilities and how important it is to approach treatment with a holistic mindset that takes into consideration all of the patient’s comorbidities. In Oliver’s case, the treatment he received was not personalized and did not consider his ASD or epilepsy uniformly and Paula stared that she strongly believes if her son did not have an ID, his plan of treatment for his seizures would have been approached in a completely different manner and he would have been alive today. Further, their story illustrates the importance of training for healthcare workers on how to communicate with patients with ID, so that the patient is fully aware of what is occurring, feels comfortable in the situation, and can offer their consent or dissent. I’ve provide the link to Paula’s campaign website where she goes into better detail of Oliver’s story and touches on some key elements that we should all consider before we start our carriers in the field of disability.

https://www.olivermcgowan.org/

When walking around Glasgow I noticed that there were a lot of places that have accessible entrances which is great. What isn’t great is that the entrances were not easy to get to and do not make the buildings seem inviting. I often saw signs that would say that an accessible entrance was down a side street and when I would look down that street it would be roughly paved. It is great that they have the accessible entrances but if they are in bad condition then how accessible are they? If it is poorly paved then individuals with wheelchairs or even individuals with an unsteady gait may not really be able to access the building which does not lead to a good quality of life if they are kept out of places. It is a start that there is accessible entrances even if they are in the back of a building, but I hope as time goes on accessible entrances will be in the front of buildings and provide a welcoming atmosphere for everyone. I once saw a picture where there was a ramp and stairs covered in snow. The worker was cleaning off the stairs first instead of the ramp, and an individual in a wheelchair stated that if the worker cleaned off the ramp first then  everyone could get into the building. This goes back to if every building was created with universal design then it would be accessible to everyone and we wouldn’t have to worry about looking for accessible buildings. Glasgow is a lot better than most places with accessibility but it stil has a lot of room for improvement.

http://xbar.ir/delete-account-telegram/

Artists from Project Ability are painting portraits at the IASSIDD conference. Here is Cameron painting Andrea.