July 27, 2023

The Department of Medicaid Assistance Services (DMAS)

ATTN:  Jason Perkins, Program Manager/Waiver Operations

Suite 1300

600 East Broad Street

Richmond, VA 23219

Dear Program Manager Perkins:

            The Legal Aid Justice Center (LAJC)[1] appreciates the opportunity to comment on the revised version of Appendix C General Service Specification, Provision of Personal Care or Similar Services by Legally Responsible Individuals, pages 172-176, of the Draft FIS Waiver application.

            We appreciate and applaud DMAS’s responsiveness to the initial public comments, now proposing both consumer- and agency-directed models for personal care provided by legally responsible individuals.  However, analysis of the common themes from the initial comment period indicates that the modified proposal still will not address the top concerns of families utilizing the FIS waiver.  The themes, in order of rate of occurrence in the comments, include:

• The burdens of documentation, training, and process are excessive;
• The hourly pay is insufficient;
• Parents and families can best meet their loved ones’ needs and deserve deference;
• There is a lack of qualified personal care attendants who can meet their loved ones’ needs;
• It is not possible to stay employed while legally responsible for someone with a severe disability;
• There are no other consistently available caregivers;
• Personal care should be consumer-directed;
• The 40-hour cap on compensation is too low for many families and the limit should be individualized to the consumer’s and family’s needs;
• Non-family caregivers present health and safety concerns;
• The loved one’s needs are such that unfamiliar caregivers are problematic; and
• Parents who take care of their children with disabilities all day, every day need respite.

Further, analyzing the comments that have been submitted thus far to the revised Waiver application, there are additional themes:

• The employer-of-record requirements are unduly burdensome; and
• The electronic visit verifications with clocking “in” and “out” are not appropriate for family caregivers.

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Based on this feedback, as well as that from our clients, we continue to have concerns about (1) the 40-hour cap, (2) the restrictions on who can be the employer of record and what must be documented, and (3) and the ineligibility for respite care.

            The 40-Hour Cap

            It is highly difficult for many families to recruit external caregivers who are trustworthy, willing to accept low pay, and able to meet disabled family members' complex care needs. Because of this, legally responsible individuals (LRIs) often leave their paid careers to assume the caregiver role. These caregivers are greatly involved in the care of their loved ones and possess a deep understanding of what is best for them. The value, availability, and competency of these caregivers contrasts with the dearth of available alternatives, particularly for families whose loved ones have extraordinary or highly complex physical needs, and/or highly sensitive behavioral needs.

            While allowing LRIs to serve as paid caregivers helps address the lack of willing, able, and available attendants, a 40-hour cap that applies simply because the caregiver is legally responsible undermines this solution.  As a practical matter, even when a member is granted more than 40 hours of personal care, there are numerous situations where functionally no one can perform the care other than the LRI.  As a result, the cap ultimately limits the amount of care a member will receive while simultaneously limiting the family’s income (because the LRI is unable to work).  It therefore penalizes the member and their family for having the particular needs they do—i.e., members whose behavioral needs make the LRI the only option, or members who have sporadic physical needs that do not align with eight- or 12-hour shift work an agency can offer, or members and families with any number of health vulnerabilities or behavioral or physical idiosyncrasies.  It also penalizes families who wish to hire attendants but are unable to do so due to their locality.

            These families must then face an impossible choice—financial insecurity or leaving their loved one with an unsuitable caregiver, assuming one can even be found.  The proposed 40-hour cap is an acceptable baseline standard, but it is imperative that the State provide exceptions for individual circumstances.  LAJC recommends that the State create a mechanism by which a member can petition for an exemption to the 40-hour cap, based on the member’s medical needs to prevent unjustified institutionalization and isolation.

Employer of Record Restrictions

            Components of care for individuals on the waiver can be both personal and intricate to closely involved family members. LAJC is concerned that requiring the Employer of Record (EOR) to be an individual outside of the immediate family unit while residing within a 50-mile radius of the legally responsible caregiver poses certain barriers inside existing, effective systems of care.  Because the EOR position is time-consuming and unpaid, families without community support are limited in sourcing reliable, trustworthy candidates.  Furthermore, introducing an external EOR who is not deeply attuned to the circumstances of an individual on the waivermay disrupt and even complicate care.  For instance, a lack of cultural and language familiarity can lend itself to misunderstandings and contesting values, while a lack of long-term insight can make the EOR an insufficient advocate for the individual’s education and needs.  By allowing the EOR to be another legally responsible individual, families can streamline care practices and provide consistency and comfort to the member’s benefit.

            Electronic Visit Verifications

            Families supporting their loved ones at home face extraordinary stressors.  While the need for process and monitoring by the State is understood, it is also impractical and unduly burdensome to ask LRIs to contemporaneously document their caregiving indefinitely.  LAJC recommends that after an initial training and probationary period, the State develop a streamlined process for LRIs to document their care.

Respite Care

Finally, LAJC is concerned about the prohibition against respite care for legally responsible caregivers.  While LRIs should not be eligible for respite during their 40 hours of paid work, they should be eligible during unpaid hours.  It is difficult to imagine who would need respite care more than a parent or spouse who is caring for their loved one around the clock, both while working as their attendant and when unpaid. 

Once again, we thank you for the opportunity to comment on this waiver application.  If you have any questions, please reach out to Amy Walters at the Legal Aid Justice Center.

Sincerely,

Amy Walters

Senior Attorney

Legal Aid Justice Center

1000 Preston Avenue, Ste. A

Charlottesville, VA 22903

(434) 529-1833

amyw@justice4all.org