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:

• Reduced access to the best level of care, provided by family members and especially parents
• Increased level of risk – my daughter is non-verbal and thus cannot tell us if something is wrong, and there is always more risk when hiring someone coming from outside of the home
• Violates the individual’s right to choose the type of services to employ (agency vs. consumer directed)
• Artificially imposes a limit on services an individual is able to access, not related to verified need.
• Disregards completely the needs of individuals with disabilities and their families, and appears to ONLY benefit agencies.
• For parents: reduced pay for the same work, if needing to go through an agency, plus an additional unneccesary burden of proof that we, as parents, are qualified (and no one is asking us if we are qualified for the countless hours we provide this care for free, what changes when we are finally paid for a fraction of it)

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 legally responsible individual must be employed by a personal care agency, and thus meet all of the same requirements as other personal care aides." Requiring legally responsible individuals to become employees of an agency:
  1. Strips waiver participants of the right to choose between self-directed and agency-directed services, directly contradicting the statement in Appendix E: Participant Direction of Services on page 228: "Individuals are afforded the opportunity to act as the employer in the consumer-direction of personal assistance, respite, and companion services." Removal of this right to choose is based solely on the participant's disability and extraordinary care requirements that result in the need for a legally responsible adult to provide care. It penalizes a waiver recipient based on the level of their care requirements.
  2. Places a significant additional burden on caregivers who are already caring for their loved ones 24/7 by requiring that they meet the same requirements of other personal care aides, which entails, among other things, completing a training curriculum consistent with DMAS requirements and passing an objective standardized test of skills, knowledge, and abilities approved by DBHDS. These caregivers have already been identified as the most qualified individuals to care for the waiver recipient, already have the necessary training and experience from years of providing care for the specific individual, and can identify nobody else to provide the care that they are providing on a daily basis. They are unable to leave their individual to attend training or testing for certification, making it unlikely that they will be able to meet these requirements necessary to be paid as an employee solely due to their existing caregiving responsibilities - because the very nature of the service they are providing means there is nobody else to provide this care. 
  3. Limits access to waiver services for individuals who live in areas of the Commonwealth where there are no personal care agencies to provide services/'employ' the legally responsible individual
• "Legally responsible individual aides shall be limited to provide 40 hours of compensated care per week."
  1. This imposes an artificial limit on the amount of waiver services an individual is able to access. It is not based on the individual needs of the waiver recipient, nor does it follow the service authorization process. Furthermore, live-in attendants who are not "legally responsible individuals" have no limits on compensated hours worked other than the total number deemed necessary for the waiver recipient's needs as determined by the service authorization process, and non live-in attendants are limited to 40 hours plus 16 hours of overtime per week.
  2. Per the "2.27.2003 -FACT Sheet: Reimbursing Legally Responsible Individuals" the stated rationale for the limitation on reimbursed service hours is that "CMS has cited 40 hours a week as a potential safeguard." I must ask, safeguard against what? Surely, not against a legally responsible individual being overworked, as they have no choice but to provide the care their loved one requires, whether or not they are reimbursed. It appears the only thing that is being 'safeguarded' by imposing an arbitrary limit on the number of hours reimbursed is state money, at the expense of the health and well-being of waiver recipients and their caregivers.”

“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.”