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:

• Requiring proof that care provided by a legally responsible adult is “above and beyond what the legally responsible individual is obligated to provide” places additional burden on families of waiver recipients.  By qualifying for waiver services, the recipient has already been shown to require care and services above and beyond that of their peers in order to prevent being classed as a ward of the Commonwealth.  Legally responsible individuals already provide these services, and are the most qualified individuals to do so. There should be no additional burden placed on personal care attendants due to their relation to the waiver recipient.  In fact, there is no additional burden required of non-related personal care attendants, which makes this punitive to those related to the recipient.  I support  the rights of waiver recipients to direct their own care without undue burden of proof.
• Requiring that legally responsible personal care attendants be employed by a personal care agency removes the consumer’s ability to choose consumer-directed care.  This would place a significant burden on family members by requiring them to travel outside their home to be screened, trained, qualify to nurse’s aide standards, and to attend orientation sessions.  Given the shortage of suitable non-live-in care attendants, this is a barrier to employment by live-in attendants, and will incur significant costs, which is the exact opposite of "thin government" practice.  In addition, supervision by an agency at the frequency recommended in the document is intrusive--much moreso than supervision of consumer-directed attendants who do not reside with the consumer--and will also come at a great cost.  Across the United States, many states, including California, Connecticut, Delaware, Florida, Maryland, and Texas, already offer consumer-directed care by family members and legally responsible individuals.  I support retaining services by legally responsible individuals at the direction of the waiver recipient, a move which would save the Commonwealth money.
• Requiring that there be evidence that no one else is able to provide care before a legally responsible individual can be approved as caregiver.  This denies the waiver recipient the choice that is granted under the consumer-directed model and is punitive to those related to the recipient.  Legally responsible individuals who love and care for the waiver recipients should always be the first option for delivering waiver services.  I support the waiver recipient’s right to direct how their care is delivered and by whom. 
• Requiring that legally responsible individuals be limited to 40 hours of compensated care per week.  Legally responsible individuals should face no limitations beyond those of any other care attendant regarding service hours; to do so is discriminatory.  Recipients are allowed up to 56 hours per week of attendant service hours; the cap should increase to cover the maximum possible, in line with what would be paid to an external care attendant.  The goal of waiver services is to prevent the waiver recipient from being placed in a care facility, which bears a significant cost to the public and offers a very poor standard of care with chronic abuse having been reported in multiple facilities for adults and children.   I support bringing increasing the cap to 56 hours per week in line with hours paid to attendants who do not reside with the waiver recipient.

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.