We are writing in opposition of the proposed requirements for legally responsible individuals to continue to be paid as caregivers to their disabled children.  We have the following concerns:

1. the parents must be employed by a personal care agency and meet the same hiring and training requirements as other personal care aides.  As a PT,DPT of over 15 years and father, I would not meet the requirements to be hired by one of these agencies.  No one knows our child’s medical better than his parents
2. the requirements for “extraordinary care” and the other regulatory burdens including documentation of care, required hiring and training that would be placed on any parent who could somehow be hired by a personal care agency.

the results of having a severely disabled child in our family has been loss of job / income due to lack of finding reliable caregivers under the current program.  One parent now stays home because we could not keep caregivers at the hourly rate paid.  Appendix K allowed a bit of financial assistance to supplement our lost income and relieves the burden of finding a caregiver willing to work for barely over minimum wage.  The proposed requirements add a tremendous burden that most families will not be able to meet.