While we appreciate the fact that DMAS is willing to amend the original plan submitted to CMS.  It would have been more efficient if DMAS had actually listened to the recommendations by the hundreds of comments made on Townhall about the first draft.

This new, amended draft continues to place families, who already are in crisis, at continued risk of being unable to provide the care their child requires.

“The proposed language purporting to extend paid parental caregivers may at first glance seem like a step forward, but in practice, it would be a disaster for families struggling to care for their disabled minor children. Among the many “guardrails” that would block families from accessing this vital benefit.” Quote from a comment by “Anonymous”.

EOR & LRI
1)         The proposed language specifically prohibits a parent from serving as a paid caregiver if the other parent is the EOR, and vice versa. However, the DMAS EOR manual explicitly states that the EOR for a minor child MUST be a parent or other legally responsible individual. The EOR must be intimately familiar with the minor child’s private medical information and must devote significant unpaid time to be trained, to approve shifts, and to communicate with the fiscal agent.  The EOR will also be the individual who will sign tax paperwork, manage attendants, and sign timesheets.  This role should be filled by another parent if available.

      IF Families can’t find PAID attendants to care for their children, then they certainly won’t be able to find an UNPAID person to perform these legally responsible tasks as an EOR. 

https://web.partnership.vcu.edu/servicesfacilitators/Module%202-PartA/downloadables/CD_Employer_Manual_updated_3.30.15-%20Final.pdf

1. "Essentially, this language will force families to choose between having a parent EOR or a paid parent attendant. This carve-out is so specific it almost seems as though DMAS is trying to purposely limit the number of families who maintain paid parent attendants - while giving lip service to extending this crucial accommodation." Quote by "Anonymous".
2. The UNPAID duties of the EOR include: (all for free)

• Recruiting, interviewing, hiring, training, directing and supervising all attendants; 
• Firing an attendant, if necessary;
• Making schedules and tasks to be completed by each attendant;      
• Managing and evaluating the work of each attendant; 
• Keeping track of the services provided by the attendant; and                         
• Establishing a system for signing and submitting timesheets.  

3. Families cannot easily find another trusted local individual (must be within 50 miles) to take on this unpaid role in order to maintain a parent attendant. This will be a particular hardship for military families (and Virginia has a LOT of military families.)  Northern Virginia is a very transient community where work requires families to relocate for employment away from extended family.

2) Extraordinary Care
Authorization for attendant care hours are evidence enough that the child has documented needs above and beyond the ordinary care a parent would give a child and no further proof should be necessary.

3) Electronic Visit Verification (EVV) & Documentation
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. How can DMAS be requiring live-in caregivers who are parents to use EVV if as of  January 1, 2021, EVV is not required for live-in caregivers? 

https://www.dmas.virginia.gov/media/5881/evv-faqs-as-of-6-1-2023.pdf

This requirement for parents to use the cumbersome EVV system, which is fraught with technical problems that have not been resolved, is unreasonable and intrusive and violates Virginia Code.

4) 40-Hour Cap
This is an arbitrary cap on the number of hours for which a parent can be paid for caring for a disabled child and by doing so, saving the state hundreds of thousands of dollars in external care costs. 

If families have been authorized for more than 40 attendant care hours per week and there are no other available caregivers, then there’s no justifiable reason to artificially cap the number of those hours that parents can be paid.

“The term “guardrails” appears repeatedly in communications about the proposed changes. What goes unsaid, of course, is the reasoning behind this language, but we can read between the lines. Guardrails are supposed to guard against something - it’s abundantly clear that DMAS doesn’t actually trust families to oversee the care that we have diligently provided for our minor children for years, and fears that parents will somehow cheat the system. This is incredibly insulting and reflects an utter lack of knowledge about the way life actually works in our homes and the many layers of oversight we already live with. The caregiving and management of care never ends! This is why Appendix K was such a lifeline, and why Virginia families were so relieved to see it adopted permanently, and why we are so utterly frustrated with the new proposed language.” Quote from a posted comment by "Anonymous".