NC Medicaid offers two home and community-based (HCBS) waiver programs that serve children: Community Alternatives Program for Children (CAP/C) and Innovations. These programs allow children with disabilities to qualify for Medicaid without taking their parents’/legal guardians’ finances into account, therefore basing eligibility on the child’s income and assets only. Both waivers are designed to help individuals and their families receive services and supports in their home and communities to live the lives they choose.
Both waivers are for kids who are at risk of institutionalization. This does not mean that the parent or legal guardian has to be considering placing them in an institution to qualify. “Risk of institutionalization” means that if care were withheld or withdrawn, the child would likely end up in a hospital or other facility because of physical or mental deterioration. This also aligns with the federal requirement of HCBS that a waiver slot must cost less than the cost of institutionalization.
CAP/C serves children ages 0 through 20 who are medically fragile. In order to meet the definition of “medically fragile,” the child must meet one criterion in each of the 3 categories:
- 1. Has a primary chronic medical condition or diagnosis that has or will last more than 1 year
- 2A. Been inpatient at least 3 times in the last 12 months
– OR –
2B. Had a hospital stay for more than 10 days in the last 12 months
– OR –
2C. Had at least 4 exacerbations of the chronic medical condition requiring same day sick, urgent care, or ER visit
– OR –
2D. Requires ongoing specialized treatment or intervention performed, supervised or delegated by a physician (some examples include IV infusions,rescue meds for seizures or asthma or oxygen titration) - 3A. Use of a life-sustaining device
– OR –
3B. Requires life-sustaining hands-on care to compensate for the loss of bodily function (some examples of this include turning to prevent bed sores or incontinence care to prevent skin breakdown)
– OR –
3C. Requires non-age-appropriate ADL assistance (some examples of this include a 2 year old unable to sit up in the bathtub or a 1 year old still requiring head support when taking a bottle)
There is no waiting list for this waiver, and anyone can refer a child by contacting NCLIFTSS at 833-522-5429.
Innovations serves individuals of all ages who have an intellectual and/or developmental disability and need assistance with activities of daily living. There is a substantial waiting list for Innovations waiver slots at this time. Slots are allocated by county, so each county’s waiting list will be slightly different. Because of the long wait, it is very important to apply early and, as part of the application process, join the Registry of Unmet Needs (i.e., total waiting list population in NC). Not only does waiting list participation show our NCGA the true number of individuals waiting for services, but if the child waiting is on Medicaid, there are services available called 1915(i) services that can help support that child and family while waiting. 1915(i) services include community living and support, supported employment, respite, and transition support. To start a referral for the Innovations waiver and get on the Registry of Unmet Needs, find the local LME/MCO here.
Once a child is on either waiver, in addition to all the benefits of Medicaid State Plan services, there are additional waiver services available to support the family. These services include case management, weekly in-home/community services, respite, home and vehicle modifications, assistive technology, adaptive carseats, adaptive tricycles, and more. In-home/community services can be provided through an agency or consumer-directed/self-directed with the family doing the hiring/managing of staff.
Many children are eligible for both waivers. Therefore, it is encouraged that children apply for the CAP/C waiver, and then the Innovations waiver, so they can start receiving CAP/C services and get on the waiting list for Innovations. Since CAP/C ends at a child’s 21st birthday, they will need to transition off of CAP/C at some point and begin the next stage of appropriate services. If Innovations is an appropriate service option, early waitlist participation is important to ensure a timely waiver slot. While there are some CAP/C to Innovations transition slots every year, these opportunities are limited and should not be considered a guarantee.
With the upcoming addition of tailored plans on July 1, 2024, it’s important to note that everyone who wants to remain in the Innovations waiver will have to move to the tailored plan. Unless excluded another way, anyone on the Registry of Unmet Needs who wishes to remain on the Registry will have to move to either the tailored plan or a standard plan. 1915(i) services will only be available through the tailored plan. However, CAP/C will remain in Medicaid Direct indefinitely.
Written by Jenny Hobbs
NC Child PAC Member
Co-founder and Chair, Advocates for Medically Fragile Kids NC