FAQs - Funding NC Innovations Waiver Waitlist

Speaker: Lisa Poteat, Deputy Director, The Arc of NC

Lisa Poteat: R. Employer of record is a model of self direction. Under the Innovations Waiver, it's a lot of work, it's a lot of responsibility. It basically means that the individual receiving the services or their family members or a representative for them takes on the responsibility that a provider would normally take on in the provision of services. It's complicated, It requires a lot of training, um, and it's not for everybody. There are some individuals and families who would much rather have a provider do all of this work for them. And I don't know of anyone who encourages lots of families to go in this direction. It could be unsustainable once the family is out of the picture, if the family is the, the E. O. R. driver. If they're operating all of those systems. There is an option for self-advocates using employee record services to name a representative who would act as their kind of operator or provider of services. And it does not have to be a parent, It can be another family member, it can be a friend, it can be a trusted individual. So there are other options, but again, employer of record is a complicated option, very rewarding for people who want to go that route, but it requires a lot of training, a lot of mentoring, a lot of guidance, a lot of follow up, uh, and a lot of Medicaid rules are involved. We only encourage it for families or individuals who are really interested in going in that direction and very dedicated to the process.

Lisa Poteat: the question is D. H. H. S.' Plan is to add 1000 more slots next year. How will that address the 16,000 on the run within 10 years? First of all, that's Department of Health and Human Services. I'm not sure if their plan is to add 1,000 more slots next year. That may be in the Governor [Roy Cooper's] budget proposed by the Department of Health and Human Services. We haven't seen that yet. So I don't know what they're proposing, But the legislature did allocate 1000 slots last year. The question, how will that address the 16,000 on the RUN within 10 years? The RUN means the Registry of Unmet Needs. That is the the waiting list for these services in North Carolina. There are approximately 16,000 people on the waiting list for those services in the state today. And it grows every day, every week we add a few more folks. The more we add, the more slots we need funded, how will 1,000 make a difference? It won't. It won't make a difference. It will.... For those 1,000 people and those 1000 families, it'll make a huge difference in their lives. It will not make a difference for the folks remaining on the list. And the folks who are going to be added to the list. Remember the list is not capped. The waiting list will continue to grow. We need as much funding as possible for Innovations Waiver slots in order to get rid of the waiting list. In addition, we need money to raise the service rates for the Innovations Waiver services so that the providers can pay staff more and attract people to provide those services. Otherwise, we get slots funded by the legislature, and we can't find staff to fill the positions to provide the services so it all fits together. We have to advocate for both. At the same time. 1,000 slots is a place to start and talking with the General Assembly members. It's not the place to stop.

Lisa Poteat: The question is what criteria are used when selecting a person to be moved from the waiting list to waiver services. This is the Innovations. Wiaver we're discussing. The first criteria that must be met is that they must have a level of need that qualifies them for the innovations waiver services. Typically this is referred to as an I. C. F. Level of need. That stands for intermediate care facility. And usually it means that the person is at risk of institutionalization or living in some other type of residential facility if they do not get the community supports and services that they need to live in the community, Innovations Waiver slots are allocated by county. And so each county will get a number of slots when the legislature decides to fund more. That's based on a population in that county. And then those slots are administered by the LME - local management entity organization - in that region that's covering that county, H. L. And Me keeps a waiting list. And as people move to the top of that waiting list based on chronological order, they are considered for an Innovations Waiver slot. There are slots that are reserved for active military families who move into the state or move from one region, one LME region to another. There are slots that are reserved for emergency situations. Each LME has a set of emergency slots. There are slots that are reserved for kids moving off of the CAP-C waiver when they're becoming adults. And, there are slots for people who are moving out of institutions. So those are separate and apart from the typical waiting list that runs mostly in chronological order.

Lisa Poteat: The question is the relative as a provider for minors was previously dependent on Appendix K even for the waiver, Is that changing? Let me explain a little bit about that question. First, Appendix K was the covid exceptions or um amendments that were allowed in the Innovations Waiver. So North Carolina asked Centers for Medicaid and Medicare Services, 'hey, because of COVID and the public health emergency, can we have these exceptions to some of the rules on the Innovations Waiver?' CMS said yes. One of the things that CMS granted us and many other states was that we could now use the relative as provider option for minors for Innovations Waiver recipients under the age of 18. Typically, parents cannot provide services for kids under the age of 18 in our waiver, this made an exception. This is an exception that has helped so many families through COVID and and through other trials and tribulations that families go through it. Right. This one is so helpful to families that, that we and others have advocated it that it stay in place after the public health emergency ends. So when the public health emergency ends at the federal level, North Carolina has a certain amount of time to end the exceptions under Appendix K. This is one that the state is very interested in continuing. I think we've all seen the benefit of some, some families being able to provide services for their kids under 18. This again is not for everybody, not every family wants or needs this option, but for those that do, it's an incredible option. Um, so we're hoping that that will continue, and we believe that they will ask for that to continue. That is something to watch and to advocate for.

Lisa Poteat: In 1997, there were 13,000 waiver slots funded in North Carolina. Today there are around 15,000 slots funded. My question is, were those 13,000 funded slots in 1997 a combination of all of our home and community based funded slots that could have been the old cap M-R-D-D waiver that preceded the Innovations Waiver in our state? The CAP C waiver, The CAP-D, a waiver for children, for disabled adults. I don't think there were any other waivers in 1997, but the 13,000 funded slots at that time could have been a combination of all those waivers Talley Wells and I have an email back and forth about how do we figure this out? Because it would be very interesting to have the breakdown of the Innovations Waiver slots that have been funded since the inception of the Home and Community-Based Supports Waiver for folks with intellectual and developmental disabilities in our state. I think that would be some powerful information we could use uh for leverage with legislators in particular to help them understand the lag we have in funding this desperate need. I don't know how to get that information. Um I've suggested to tally that he might get D. H. B. Division of health benefits to do some research on that. I don't know if they have it. A CMS may have some history on that. Some of the histories on their website, but not all the way back to 1997. I'm hoping someone out there has some time to do the digging and and get this research done. It could be a powerful tool, but at the moment I don't have it and don't know exactly where to get it. We will continue to work on that.