Thank you for the opportunity to review and comment on the Renewal Application for 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. My remarks specifically address the application for 1915(c) HCBS Waiver: Draft VA.006.05.00 - Jul 01, 2023. I am a parent of a disabled adult who has utilized consumer-directed waiver services for many years. I am grateful that waiver services allow me to keep my child out of an institution, even while I continue to participate in the Commonwealth’s workforce. Although I appreciate and support the substance of the major changes outlined on Page 1 of the Renewal Application, there are several provisions for implementation that cause me great concern. DMAS should be very cautious in their delivery of waiver services, especially given the Commonwealth’s troubling history of caring for our disabled population. Please recall that in 2011, the U.S. Department of Justice's Investigation of the Commonwealth ‘s compliance with the Americans with Disabilities Act brought about a Settlement Agreement in January 2012. Yet, 11 years later, the Commonwealth still has not fulfilled all of the requirements of that agreement (https://www.dlcv.org/.../2015/01/DDS-110210DOJFindings.pdf). And just this month (March, 2023), the U.S. Department of Education put the Virginia Department of Education on notice for its failure to comply with requirements under the Individuals with Disabilities Act (https://specialeducationaction.com/u-s-dept-of-education.../). Our Commonwealth is under scrutiny, thus we need DMAS to provide exemplary service frameworks for waiver recipients and their caregivers.
I commend DMAS for the proposal to continue (post-Covid pandemic) allowing legally responsible adults (that is, parents of minor disabled children and spouses of disabled adults) to be paid as providers of personal attendant care in this Renewal Application. For many years the workforce capacity to meet the labor needs of waiver-supported personal care services and respite services in the Commonwealth has been insufficient. This is a very positive step forward.
Nevertheless, many individuals receiving these waivers live in rural areas or have complex communication or medical needs that make it difficult to find non-family member employees for consumer-directed care or agency services. Given these realities it is disturbing that this application seems to put undue hardship upon families who are ready and willing to care for their family members.
I take issue with several specific policies put forward in this application that will create barriers to care and negatively impact the quality of life for our Commonwealth’s disabled citizens and their families. Several policies specified in this Renewal Application make it more difficult for related and legally responsible individuals to care for a disabled person than it is for an unrelated person to provide such care. I do not understand why the relatedness of the individual care provider is of any interest to the Commonwealth and ask DMAS to reconsider these policies.
There are four provisions in Appendix C, p 175-176 that create extra family and waiver recipient burden and serve as barriers to care:
Another issue with this requirement is that it can cause disruption in a waiver recipients care, especially considering the workforce shortages that make it difficult to identify a personal attendant. Removing this barrier would address workforce shortage for waiver recipient care.
Additionally, I think there is an opportunity for cost-saving and easing work for already over-burdened agencies in regard to service monitoring (Appendix D-2 p201-202). In many health care settings it is common to monitor the implementation of a plan of care frequently during the initial implementation period, then if the care plan is being implemented safely and appropriately, follow-up visits can be decreased, at the discretion of the care provider. Of course, in unstable situations, visits may even need to become more frequent. But for someone who has a plan in place and is not experiencing difficulties after twelve months of quarterly visits, it seems reasonable to consider moving to less frequent visits, semi-annual or annual visits, which would still comply with federal regulations. Any change in the individual’s situation should warrant a move back to quarterly visits, but for many waiver recipients, there are years of service provision in which there are no changes, especially when family members are providing most of the care. Instituting this flexibility would remove a burden on overworked service facilitators and their agencies, and allow for more focus on the most vulnerable of waiver recipients.
I appreciate the opportunity to comment on this Renewal Application 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. Thank you for the time you have given to reading my remarks. I hope you will consider my proposed revisions as DMAS seeks to efficiently and effectively provide safeguards, support, and meet the needs of waiver recipients and their caregivers as they negotiate life at home and in their home communities.