I am writing to comment on items 4 and 6 from the notice regarding the 1915 (C) HCBS Waiver amendment applications. I am not familiar enough with the remaining items to make comment.
Item 4. I advocate for the allowance of LRIs to be paid a minimum of 40hrs per week when acting as an aide/attendant for personal care/personal assistance for their disabled family member on a Medicaid Waiver. Parents, or other family members of the disabled, are the most able caregivers for the service recipient. Their typically 24hr per day presence (unless able to receive respite hours) with their disabled loved one means that they are the most "in tune" with the slightest nuance of behavioral change or medical need. Many LRIs have given up full time employment in order to keep their disabled family member in their familiar environment vs nursing home or hospital. The disabled person is also most comfortable and receptive to treatment with a known family member.
For example, my disabled sister-in-law, who needs assistance with ADLs as well as IADLs, has had the awkward, uncomfortable experience of having five separate strangers, (engaged via outside care companies) over a two-year period, see and touch her naked body when giving her a daily shower. She is a very modest individual and this experience was humiliating to her.
Our family's experience with PCAs has been a negative one, and time consuming in that the hired attendant themselves eventually require monitoring or managing by the family instead of the company that employs them. Normally it's just that the aide spends the greater part of their time on their phones or watching TV, instead of engaging with our disabled one. But we've had everything from an aide nodding out on our kitchen island, to having a shouting match outside our home with a friend they gave our address to, to another found mixing eggs for an omelet with her bare hands.
The consumer directed care model is, to me, an expression of democracy and the spirit of social security at its best, providing the freedom of choice to the disabled of our society, and their families, who have been overwhelmed by unexpected needs of their loved ones. It makes me glad to have paid into social security throughout my working life with each paycheck I ever received. I am opposed to any push by the state to require overly burdensome documentation, or use of outside caregivers, as a blanket requirement. If there is some suspected abuse of the system, let a discovery be done on a case-by-case basis, not as a universal assumption of guilt until proven innocent.
Item 6. If the current educational requirement for Service Facilitators is causing a shortage of informed and effective workers, then maybe there could be program of thorough training instituted by DMAS, after which the facilitators would sit for a state exam and be licensed and overseen by the DPOR. Similar to the real estate industry, the individual service facilitator in the field would act as "agent" for the "broker" service facilitator Moms in Motion in our case. I would advocate to stop the requirement of these workers to be driving their cars all day long to obtain information and signatures. This is an antiquated practice in our age of technology which can easily produce what's needed electronically. Although I will say that my disabled sister-in-law always looks forward to seeing her representative when they make their rounds. Maybe a quarterly personal visit would be less burdensome for the facilitators but still eagerly awaited by the consumers.
In closing, I am grateful for the waiver that my sister-in-law receives although at present we are having difficulty communicating with social services to straighten out whatever is holding up a renewal. Most likely they too are overwhelmed by their workload. I think we're all in this together but there is opportunity to streamline the process while maintaining important regulations where they are needed. The main focus must always remain on our disabled individuals, and their caregivers, however.