A place on a waiting list tells us when someone asked for help. It does not tell us how urgently they need it.
KFF1 reports that people with intellectual and developmental disabilities (IDD) represent 72% of the Medicaid home care waiver waiting list population. Behind that number are people with widely different circumstances: some are planning for future needs, while others face health risks and gaps in support that make continued waiting dangerous.
When access depends primarily on time spent waiting, a person with escalating needs can remain behind someone whose circumstances are more stable. Waiting time deserves consideration, but it should not outweigh an urgent need for support.
The Health Risk Screening Tool (HRST®) can help states make more informed decisions. Through 22 Rating Items, the HRST identifies health risks and generates a Health Care Level ranging from 1 to 6, with higher levels indicating greater health risk. This provides a consistent way to identify concerns that a waiting list application date cannot reveal. IntellectAbility, the tool’s developer, holds that the HRST can help inform priority for IDD waiver waiting lists.
States could use that information within a broader, person-centered prioritization process: screen people when they join the list, arrange clinical follow-up for identified concerns, and update screenings regularly and when circumstances change. Decisions should combine HRST findings with functional and behavioral support needs, supporter capacity, available services, and the person’s own goals. Health risk screening should inform priority; it should not substitute for waiver eligibility determinations or a comprehensive assessment of need.
Consider two people awaiting services. One has dependable support and stable health. The other has emerging swallowing concerns, repeated falls, and a supporter who can no longer safely provide necessary assistance. A need-driven process should recognize the second person’s urgency even if that person applied more recently.
Clear criteria, clinical review, and a way to challenge decisions would help make this approach transparent and fair. Time spent waiting could remain a factor among people with comparable needs. A lower HRST score should never erase substantial nonmedical support needs.
The HRST cannot create additional waiver slots. It can, however, help states see the people behind the waiting-list numbers and direct limited services to those whose unmet needs are most urgent.
People should not have to experience a preventable crisis to demonstrate that they can no longer wait.
Dr. Craig Escudé is a board-certified Fellow of the American Academy of Family Physicians, the American Academy of Developmental Medicine, and the American Association on Intellectual and Developmental Disabilities, and he is President of IntellectAbility. He has more than 30 years of experience in the IDD field, including over 20 years providing clinical care for people with IDD and complex medical and mental health conditions. He is the author of “Clinical Pearls in IDD Healthcare” and developer of the “Curriculum in IDD Healthcare,” an eLearning course used to train clinicians on the fundamentals of healthcare for people with IDD. He is also the host of the “IDD Health Matters” podcast.