Fighting the good fight: Keep consumer directed services!
To Whom It May Concern:
I am a mother of a child with severe and profound disabilities. He suffers from many life threatening diseases. He requires full assistance for all activities of daily living as well as full assistance to access his educational curriculum virtually. Since the beginning of the pandemic, it became too risky for him to receive nursing services from any individual outside of our home. He has a fragile immune system and risks losing his life each time he contracts any upper respiratory virus, let alone a novel virus like COVID. The risk is so great that his medical team has insisted he continue receiving his education virtually instead of going back in person. In saying that, the consumer directed model of services that became available to families like mine alleviated multiple challenges we were experiencing with balancing care for our loved one, but also being able to financially provide for them too. If it weren’t for this option, I would not be able to support my family. I am reaching out to request that these services are not taken away. It would create such a hardship for our family, especially with the current nursing shortage. Please consider situations like ours before removing this option. I beg you. Thank you for your time and attention to this very sensitive matter.
