I am the mother and main caregiver of a profoundly disabled 5-year-old little girl. She takes multiple medications per day, at different times, which need to be prepared in different ways. Additionally, she is non mobile, non-verbal, and needs support with absolutely every activity of daily living. It is extremely difficult to find consistent care for her, and while she currently has one wonderful attendant, I fill in any time the attendant takes time off, in addition to providing case management (many hours per week), and overnight support every night (she has seizures and needs to be supervised during these), which makes it impossible for me to maintain a full time job. For years it has been impossible for us to find a second person to hire for this difficult job, for the amount that DMAS pays at this time. Having the opportunity to be hired as my daughter’s paid caregiver has been life changing for our family.
I am extremely disappointed and demoralized to hear about the proposed regulations. Many of the other comments echo mine, see below for copied fragments. The main points are:
This is the first time I have ever wondered if these initiatives are making it worth seeking legal representation, as they seem to continually infringe upon the rights of those most vulnerable among us, and if nothing else, parenting a child with severe disabilities has taught us all, embattled parents, how to fight for their rights. I leave below the portions of other comments that spoke to me, and hope that you will hear us and not go through with this incredibly damaging initiative to change the regulations to our detriment.
“As the parent of a child with significant disabilities who currently receives services through the FIS DD Waiver, I have significant concerns regarding proposed regulations on page 175 of the Application for 1915(c) HCBS Waiver: Draft VA.006.05.-- - Jul 01, 2023.
As written, these regulations erect significant barriers to waiver participants accessing vital waiver services:
“The stress on us is extreme”
“A simple internet search will show that Va continues to rank low in providing appropriate support for its disabled population. This is one example. What purpose would be served by making overextended, stressed, parents qualify through an agency to care for their own children? Absolutely no purpose except to discourage them which is likely the true purpose of this. Then what? There are no caregivers willing to work for this low pay with no benefits. These agencies have already proven themselves incapable. So what next? Where does this leave our loved ones with disabilities? It’s time for Virginia families to stand up for their rights, and possibly seek out legal help. This is nothing less than harassment at this point. “
“Every study out there shows there is more fraud and abuse with Agency care than there is with CD services. DMAS pays LESS per attendant with CD services than Agencies. DMAS already skirts overtime laws with live-in attendants. This proposed change is worse for the disabled person and costs the state more. In what world does that type of change make sense? Who benefits? Agencies and that’s it.”
“Like many commenters have said parents/grandparents/siblings are the best providers because they know our children, have flexible schedules and are willing to provide care. Moreover, I have seen personally wide variety in the quality of non-family care givers.”