In regard to the consumer-directed model of services where parents of minors are able to be paid caregivers, I 100% believe that it is detrimental to the wellbeing of all parties involved (parent & minor) that this service is able to continue.
Like so many other parents of a child with a complex disorder/disability I have been unable to find nursing coverage. My daughter (trach/vent/gtube) is approved for 116 hours of nursing per week and to date we have 36 hours filled. That means the remaining 80 hours a week I am responsible for my child. Due to her complex care, I am not able to drop her off with any daycare or any untrained individual, it is literally a matter of life and death. Both times my daughter had an event where she stopped breathing, I was there to assist. None of our attendants/nurses were prepared for that.
My nurse works 8am-6pm on Monday, Thursday and Friday and 7:45am-1:45pm on Tuesdays (this is only temporary!) Due to this, I am unable to find full time employment because I have to work around her schedule. We have been trying to fill my available hours with a nurse for months and there is just no one to take my daughter’s case.
I am with my little girl, who is only 2 years old, all day every day when we don’t have nursing & without the money coming in that I get as her caregiver, we will be homeless within the year. I am working part time for two different companies in addition to what I get paid through PPL and I will not be able to make ends meet.
I think that until this nursing shortage is over it is life saving for the consumer-directed model of parents of minors to continue as a paid attendant.