Comments regarding the submission of the renewal applications of the Family and Individual Supports (FIS) and Building Independence (BI) 1915(c) Home and Community-Based Services Waivers to the U.S. Centers for Medicare and Medicaid Services. 

DMAS should provide an option for recipients to choose either agency-directed or continue with consumer-directed care by paid legally responsible individuals.

Discussion:

Appendix C: Participant Services; C-2 : General Service Specifications-

Appendix K changes to Virginia’s 1915c waivers allowed parents of minor children to be paid attendants.  These “flexibilities” have been resoundingly, positively received as evidenced by the comments on Town Hall regarding these proposed draft changes.  These Appendix K “flexibilities” have been portrayed by DMAS as something that is “short-term” and inevitably will end at the termination of the “national emergency”.  

Contrary to DMAS’s assertion that all of this is temporary, this does NOT have to be the case and these policies can continue to provide essential support for families who are struggling.  These policies that allow for consumer-directed reimbursement of family caregivers have been used successfully to alleviate challenges faced by families during and beyond the COVID-19 pandemic.

Prior to the pandemic, many states already allowed consumers in self-directed long-term support service programs to hire family members to provide care because it is a useful option with or without a health crisis. “Specifically, in 2019, across all funding sources, 19 states allowed individuals to hire and pay family caregivers in their self-direction programs.  Of those, 12 states allowed for paid family caregivers in at least one of their 1915(c) waivers or 1115 demonstrations. As of April 24, 2020, of the 33 states that have been approved to utilize an emergency Appendix K to amend at least one of their 1915(c) waivers, 17 states have opted to permit or expand the payment of family caregivers.  Five of those states already permitted payment to some family caregivers but have altered their program rules to allow for further flexibility. For example, some states have broadened the pool of allowable paid family caregivers to include a spouse or guardian.”[1]

Families should have the option to use an agency-directed or a consumer-directed model as the paid caregiver for a minor child.  If the hourly cap is 40 hours a week there is no budgetary uncertainty and no fiscal reason why families can’t provide direct care. 

While Medicaid recipients in Virginia are grateful that the posted draft proposes to continue the payment to family caregivers, we request that this policy remain as a consumer-directed option for families, rather than the proposed agency-directed service.  Parents who are “legally responsible individuals” (as defined) should continue to be able to provide paid care under consumer-directed services or agency-directed services should they so choose:

• • Workforce shortages in the long-term care service sector including home care providers have been exacerbated by the national health emergency under COVID and continue without abatement.
  • There are not enough agency-directed providers across the Commonwealth to ensure there are no service disruptions for families.
  • Paying family caregivers under consumer-directed programs is fiscally neutral for the state in the sense that you would have to pay an attendant for care whether that is a family member or a person outside the home.
  • Paying family caregivers under consumer-directed programs allows families to devote the necessary attention to structured family caregiving when they have had no choice but to quit work due to a lack of trained, reliable, and consistent outside caregivers.[2]
  • Delays in processing paperwork for attendants in Virginia are well known and will contribute to a crisis in services during any transition away from consumer-directed care.
  • Oversight of paid family caregivers can be accomplished by the monthly Service Facilitation services currently in place for consumer-directed services.
  • Diverting funds from the families that care for the recipient and putting increased funding in the hands of provider agencies does not serve the best interests of the families and only attempts to solve an agency scarcity problem on the backs of recipients and their families. 
  • Self-direction or consumer-direction is a key component of “person-centered” services and facilitates control over the delivery of waiver services which is not available under agency-directed care.[3]
  • Many parents functioning as paid caregivers have children who have more than one special healthcare need and are more likely to have those additional needs met in a consumer-directed setting. Paying these caregivers is an important service option to support family choice and quality care as Medicaid-funded family-provided care may reduce hospital utilization while also improving health outcomes.[4]

Most of the new Medicaid HCBS funds in the House budget reconciliation bill are dedicated to a new “HCBS Improvement Program,” which would provide states with a permanent seven percentage point increase in federal Medicaid matching funds for HCBS. To qualify for the enhanced funds, states would have to engage in certain activities to expand Medicaid HCBS and strengthen the direct care workforce.[5] 

The Commonwealth has no hope of meeting its goals for consumer-directed care as outlined in Appendix E-1(n) if it guts consumer-directed care with these proposed changes.  Adding more paid family caregivers to agency services cannot and will not address overall direct care workforce shortages.  Those shortages existed well before the Appendix K changes were established.  Placing paid family caregivers under an agency umbrella doesn’t alter those existing workforce shortages, nor does it improve oversight that is more than adequately provided by service facilitators.  However, paid family caregivers do provide improved direct care outcomes.

Conclusion:

In conclusion, Virginia is historically not a generous state for spending on its citizens in need.[6]  This year, 2023, we are 32^nd in the percentage of our total state expenditures for public assistance and 20.3% of Virginia’s population was enrolled in Medicaid in federal FY21, ranking Virginia 39^th.  Expanding the “flexibilities” and paying legally responsible individuals for attendant care under consumer-directed services has been one way to support families besieged by the demands of caring for their disabled loved one while they attempt to maintain employment outside or inside the home, and cope with all the challenges faced by families during the national health crisis.  The challenges of the pandemic are fading, however, the demands of caregiving and maintaining a stable household remain.  Keeping these paid family services under consumer-directed care in addition to an agency-directed option demonstrably improves family outcomes within a similar fiscal footprint – a result that serves both these vulnerable citizens of the Commonwealth and its taxpayers. 

Respectfully submitted,

The Virginia Autism Project