Regarding the Application for 1915(c) HCBS Waiver: Draft VA.006.05.00 - Jul 01, 2023, I respectfully offer my comments.
I have great concern about proposals regarding the implementation of (3) Allowing for the provision of legally responsible individuals to provide personal care assistance service.
Finding care attendants not living with or related to waiver recipients is often a fruitless task. In rural area there are often no qualified candidates available to serve as care attendant. If a family is fortunate enough to find an attendant, the attendants often show up once, only to disappear when they discover the difficulty of tasks involved in caring for someone with complex needs. Some attendants are unreliable, being lax with punctuality, or at times refusing to implement tasks covered during training. Pay is on par with that offered by fast food or entry-level retail jobs, making it difficult to attract good, qualified candidates who truly want to serve the needs of those with disabilities and/or complex medical or behavioral needs.
Over the last three years, it should have become clear to DMAS that parents and spouses of waiver recipients are the most willing providers of waiver services, especially through provision of personal attendant care services, and that they are, indeed, THE most competent individuals to offer these service. Parents and spouses are tireless advocates who already make significant sacrifices through loss of real and potential income, often losing the support of friends and family due to their dedication to their children/spouses with complex medical needs. Yet the joy in being directly involved in assisting their children/spouses has led many to realize that are significant gains when care is given by a loving, invested party, such as a parent or spouse, who has the best long-term interests of the individual at heart. We are comforting constants in a life that is filled with too many variables, including medical visits, illness, isolation, and therapies.
I am concerned by passages in the proposal which would place significant hardship and restriction on families of waiver recipients. In addition, some of the language in the proposals is non-specific, and in some cases, discriminatory. I propose that legally responsible individuals continue to be allowed to provide waiver services as they have been the last three years under Appendix K, using the consumer-directed model with supervision provided by service facilitators who already know and in many cases have long relationships with these families, with consideration of the comments below.
Several points in the proposal which I believe will increase burden on families caring for individuals with significant needs, will increase costs to the taxpayer, and will serve as barriers to waiver services are:
Thank you for your time. I sincerely hope that my comments and recommendations are considered, and that the proposal is amended to reflect one which upholds waiver recipients’ rights, as well as the rights of legally responsible individuals who wish to continue to provide the best possible care for those recipients.