My son is currently 20 years old. He has multiple disabilities that profoundly affect his life as well as the life of the WHOLE family. Every aspect of his and our lives is different because of life long sickness. This, sadly,  will NOT CHANGE till he passes away. 

As most children with special needs he requires around the clock care and supervision. Appendix K came around when he was 16 years old. For the previous 16 years I was unable to work, unable to pay into Medicaid or SSI, unable to take any substantial time off with my husband, as there is NOONE who would take care of a profoundly medically complex child or adult. 

The pay is 13.34 an hour. For an adult who is allowed to work only 40h a week, even if that person works EVERY SINGLE WEEK, they would make only 27,747  a year. That is a pitiful wage! This ISN'T a livable wage. 

On top of that you took away the respite! and the respite is for the unpaid primary caregiver. Why is it taken away?  And why is respite based on the unpaid primary caregiver? if the waiver is supposedly designed for the individual with special needs!  The respite should be given regardless who takes care of the individual with special needs.  This is very contradictory with the basis of the foundational concept of the waiver.  
If the idea of the waiver is to provide the individual with special needs with the most inclusive environment in the community then by ALL means we need to give proper supports to live-in caregivers so they can continue giving the care! "Respite care services are provided to individuals unable to care for themselves.." yet they aren't! This is not true.  Withholding the respite from single parents is especially horrendous!  This is a mistake that MUST be corrected. and the verbage must be adjusted.  (I"m not a single parent, and I can't even imagine having to take care of a medically complex child by myself, and on top of that being denied 480 h a year because of the hardship that already exist...this is just WRONG! You are literally punishing mostly single moms, who work around the clock, get paid less than a highschool kid and can't ever get a respite.  THIS NEEDS to be amended!