While the amended application is a step in the right direction, certain proposals are punitive to the most vulnerable populations, including medically fragile individuals, households containing multiple disabled individuals, and disabled individuals who are members of single-parent families.

While it's good that family members who live with the waiver recipient can be attendants, the restrictions are harsh:

• There is a weekly cap of 40 hours per LRI. Many complex individuals are granted 56 hours/week, and some families have multiple family members with disabilities, often children.

• Excluding pay for instrumental activities of daily living in the name of “parental responsibility” is harsh, discriminatory, and punitive.  If you have not had to supervise a child who self harms or has maladaptive behaviors such as fecal smearing, you cannot understand how trite it is to read that “all parents are expected to do these tasks,” as cited in the updated draft.  Developmentally delayed children can present as years younger than their chronological ages; to compare them to “typical” children with responsible parents is outrageous when done by the very agency meant to serve these individuals.  A non-LRI is not only paid minimum wage, they are paid to do the very iADLs that parents are meant to do, which is discriminatory toward LRIs and strips the individuals of their right to direct their own care.

• The onus is on the family to demonstrate proof that there is no other option, with no guidance given beyond that as to what constitutes proof and no information provided as to who will make the decision to accept or deny evidence to support this.

• The amended application states that extensive daily documentation of every service performed will be required of LRIs.  This is discriminatory, as the same is not required of non-LRIs.

• The amended application states that LRIs must use EVV.  However, effective January 1, 2021, live-in caregivers became exempt from EVV per federal and state regulations.  The Virginia Administrative Code, 12VAC30-120-900, provides the following definition:  “Live-in  caregiver" means a personal caregiver who resides in the same household as the individual who is receiving waiver services.  The amended application is not clear if a LRI who is also a live-in caregiver is exempt from EVV.

• Employer of Record - there is no way that this proposal should be allowed, given that it means sharing the individuals’ most sensitive financial and health data with potential strangers.  Most LRIs are in that position because they are the best fit for the individual.  If they had relatives and friends who could help, they would probably be using them.  If they have ZERO family members or friends within a 50-mile radius who can act as EoR and be trusted with this sensitive data, what is DMAS’s proposal?  They will have already demonstrated that they cannot hire or have been advised not to hire non-LRIs.  What of families who have ZERO family members or friends at all?  Having disabled family members is isolating; many families truly have no one who can fulfill this role.  Do they simply lose their waivers?  When DMAS “accidentally” shared sensitive data of a much less serious nature with other families during two consecutive IFSP application periods, this was deemed to be a crisis and credit monitoring was offered.  But families who wish to continue to serve as LRIs are expected to share even more information and to do so freely?

I hope that DMAS can find a way forward that will encompass all individuals and their families in a positive manner, without punitive measures against family members.  Putting politics before the care of society’s most vulnerable members would be a travesty.