Reducing the Registry of Unmet Needs

The Registry of Unmet Needs of the Innovations Waiver provides State leaders with an indication of individuals who are eligible and waiting for intellectual/developmental disability (I/DD) services in North Carolina.  The Innovations Waiver is a home and community-based Medicaid program with the goal of promoting choice, control and community integration as an alternative to institutionalization. People waiting to get on the Innovations Waiver are placed on the Innovations Waiver Waiting list, also known as the Registry of Unmet Needs (RUN).

Recently, the NC Council on Developmental Disabilities (NCCDD) commissioned a study by Cansler Collaborative Resources and the Duke Margolis Center for Health Policy to better understand the RUN in North Carolina. The study sought to determine how many people are on the RUN, how people qualify for it and how the Local Management Entities/Managed Care Organizations (LME/MCOs) manage it.  In addition, the study also included how North Carolina and seven other states have addressed waiting lists for individuals with I/DD to receive services. The study was just completed and published, including the data and conclusions below:

• As of January 2021, 15,187 individuals are on the RUN;
• The wait time for the Medicaid Innovations Waiver services in North Carolina is between 5 and 15 years*;
• The RUN is not managed in a standardized way and the data collected varies across LME/MCOs.  NC DHHS is already addressing this as they are developing a unified database for the RUN. 

*The variance in waiting time is based on the type of Medicaid waiver slot needed and the county in which the Medicaid beneficiary resides.  It’s also important to note that individuals on the waiting list may be receiving some services and supports through Medicaid (b)(3) services or through State-funded services while they wait for an Innovation waiver slot. 

The researchers also conducted a number of listening sessions and developed the following recommendations:

1. Greater regulation of the RUN process either within the Waiver (which has the force and effect of administrative rule pursuant to NC Statutes) or within the LME/MCO-DHHS contracts;
2. Executive Leadership meetings to facilitate standardized RUN oversight and management;

3)  NC General Assembly appropriations for additional Innovations Waiver slots;

4)  NC General Assembly and Centers of Medicaid/Medicare Services (CMS) authorization and appropriations for broader Medicaid supports, including medical and non-medical drivers of health, and in lieu of services for individuals on the RUN;

5)  A Statewide, DHHS-operated RUN database to increase administrative efficiency and accuracy and to centralize the oversight of slots;

6)  Authorization to fill vacant slots in real time versus at the beginning of a new budget year;

7) Consumer and family education about the RUN and the Innovations Waiver and assistance with referrals to other community living and support services available;

8) More staff designated to work with RUN applicants and to evaluate applicants for the Social Determinants of Health (Food Insecurities, Transportation, Housing and Personal Violence)

9) A meaningful feedback loop between each LME/MCO (or the State, if operations become centralized) and each individual on the RUN to include annually, but preferably quarterly, communication regarding RUN status.

NCCDD has already begun the next step of impacting the data that came out of the study.  “It is a critical time for NCCDD to continue to focus on the unmet needs of individuals with intellectual and developmental disabilities, “said NCCDD Executive Director, Talley Wells.  “The Cansler report gives us critical insights into next steps. And now is the time to focus because the state is engaged in so much that impacts unmet needs, including Medicaid Transformation, Tailored Plans, implementing new federal funding, Olmstead Planning, and transitioning to 1915(i) from (b)(3) services.  NCCDD is, therefore, delighted to have awarded a four-contract to the Mental Health Transformation Alliance, Leadership Alliance for Neurodevelopmental Disabilities (LAND) to focus on research and strategic development, community engagement, communications, and policy education in partnership with NCCDD.” 

The expectation is that this new initiative will progress the Cansler study findings.  The goals of the grant will help forward NCCDD’s five-year plan and goals, including: 

• increased financial security through asset development for individuals with I/DD;
• increased community living opportunities for individuals with I/DD; and
• increased advocacy for individuals with I/DD. 

These things are expected to result in:

• Significantly more individuals with I/DD on the Registry of Unmet Needs will have their needs met.
• Self-advocates and advocates will receive training and engage in policy education and advocacy on the unmet needs of individuals with I/DD on the Registry.
• Key policymakers and legislative leaders will be educated on the Registry and policy strategies to meet more of the needs of individuals on the Registry.
• DHHS will have more information on how Medicaid waivers and various service structures can meet the needs of individuals with I/DD.

LAND has established a cross system, cross disability Advisory Council, including i2i representation, that will guide and advise on the grant work.