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:

1. Requiring PROOF that care provided by a legally responsible person is “above and beyond what the legally responsible individual is obligated to provide”. The paragraph at the top of p.175 goes on to state, “This objective, written documentation shall also require proof that the provision of personal care by the legally responsible individual is in the best interest of the waiver individual”. Yet, there is no provision that any other personal care attendant or respite provider deliver proof that their care be in the best interest of the individual. This is an excessive burden of documentation for parents and spouses. My understanding is that parents are legally obligated to provide or see to the provision of all necessary care for any minor child and if not, the child becomes a ward of the Commonwealth. Waiver services are the alternative to giving the Commonwealth the entire burden of care thus any care a parent provides is above and beyond the legal obligation for someone who has qualified for waiver services.

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.

2. Requiring that legally responsible person caregivers now must be employed by a personal care agency. This takes away the disabled person’s ability to choose consumer-directed care. The requirements of Agency on-boarding and orientation are duplicative; the legally responsible person already engages in training and supervision through the service facilitation process. Service facilitators come to the person’s home so that the waiver recipient can continue to receive care during the training. Asking the legally responsible person to travel a distance, produce further paperwork and complete lengthy orientations is an undue burden on these people.  Furthermore, it is more expensive for the Commonwealth to utilize the Agency as middle-man. Many other states allow consumer-directed care by family members and legally responsible individuals including California, Connecticut, Delaware, Florida, Maryland, and Texas. (https://www.nashp.org/wp-content/uploads/2021/01/Family-Caregivers-for-CYSHCN-PDF-1-15-2021.pdf) Removing this barrier has precedent in other part of the United States and would save the Commonwealth money.
3. Requiring that there be evidence no one else is available to provide care before a legally responsible individual can be approved as care-giver. If a waiver recipient has been approved for a given number of service hours, why must the legally responsible individual be required to provide written documentation that there is no alternative care available? This seems punitive and denies the waiver recipient choice. A deeply bonded family member who knows the disabled person intimately is most often a better option for care than someone who is not. The care burden on these families is intense; why add to that by requiring that there be no other available care? Why make care by spouse or parent the most difficult way to provide needed care?  It is frustrating to see that the Commonwealth now proposes to make it harder to provide what is often optimal care. This is not supportive of disabled persons and their families in any way. Removing this barrier would increase waiver recipient choice and decrease challenges faced by family caregivers.
4. Requiring that legally responsible adults be limited to 40 hours of compensated care per week.  My understanding is this has no basis in Code or in the service facilitation planning process.  If a disabled person has been approved for more than 40 hours a week of care, I repeat myself to say that it should not matter to the Commonwealth who is providing that care. Unrelated caregivers who do not live in the home can be compensated for up to 16 hours of overtime above 40 hours a week.  Family caregivers are not even asking for overtime, but would like to be compensated for authorized service hours when they are the ones providing care. Denying a legally responsible person the benefits of reimbursement provided to other paid caregivers is discriminatory. For many families, the alternative to legally responsible adults providing care (at $15.94 an hour) would be to place the disabled person in a Care Facility that would cost the Commonwealth three to six times more, and yet provide a lower standard of living for the disabled person and create further disruption in the life and fabric of their family relationships. Please consider allowing any caregiver (legally responsible person included) to be reimbursed for up to 56 hours a week. Removing this barrier would be in line with Fair Labor laws, thus decreasing the Commonwealth’s exposure to legal challenges, and would save money by keeping waiver recipients at home.

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.