Seeking CEUs or other supports in goal and treatment planning for pediatric progressive and terminal conditions
I need help with resources, CEUs, or strategies for goal development and appropriate treatment planning for a teen patient with multiple significant neurological and neurodevelopmental disabilities who is now also experiencing rapid progression of a poorly-known genetic illness that is most likely to be eventually terminal. His skills are overall regressing, but can be highly inconsistent based on that day’s presentation. I want to make sure I am doing everything I can to help him, support him in feeling as safe and comfortable as is possible, and help him with QOL to enjoy his life and participate in his daily and preferred activities as long as he can, too. I also want to better help guide his family as their support needs and grief will only increase over time.
I’m a bit overwhelmed and would be incredibly grateful for any guidance on how to goal write and treatment plan for progressive cases where skill loss is anticipated rather than skill development. We are rural with limited local services and less access to resources, so we often have to use creative solutions. I’d also be grateful for tips from OTs who have lost pediatric patients, too, as this is heavy on my heart—we’ve built a strong therapeutic relationship over our time together, and seeing him decline has been painful.
Thank you so much.