Medicaid Home and Community-Based Services waivers, often called HCBS waivers or 1915(c) waivers, are the funding mechanism that lets a person who would otherwise need nursing-facility-level care receive that care at home or in the community. They are one of the most consequential programs in long-term care, and they are also one of the least understood by the families who depend on them.
If you have an aging parent, a relative with a developmental disability, or a child with significant medical needs, and a case manager has told you the assessment is “aging out” or “due for redetermination,” this guide is for you.
Why the assessment matters
The waiver is not a permanent designation. Eligibility is reassessed on a schedule, usually annually, sometimes more often if circumstances change. The assessment determines whether the person still meets the level-of-care threshold for services, what services they qualify for, and how many hours of those services they can receive.
The stakes are real. A scoping review of HCBS waivers for people with intellectual and developmental disabilities found preliminary evidence that waivers reduce unmet healthcare needs, allow caregiving family members to continue working, and reduce racial disparities in access to care (Friedman & Pollio, 2021). When the assessment goes well, those benefits continue. When it does not, families lose hours, lose services, or in some cases lose eligibility.
Waiting lists for HCBS programs have grown substantially in recent years, and access varies widely by state and by population (Kaiser Family Foundation, 2024). That makes a redetermination not just a paperwork exercise. It is a doorway you do not want to lose access to.
What the assessment is actually looking for
A waiver assessment is a clinical document. It is trying to establish, with evidence, that the person still needs the level of support the waiver pays for. That evidence usually falls into a few categories.
Adaptive functioning. How the person manages activities of daily living (bathing, dressing, eating, toileting, transferring) and instrumental activities of daily living (medication management, finances, transportation, meal preparation). The assessor is looking for what the person actually does on a typical day, not what they could theoretically do on their best day.
Cognitive and behavioral function. Memory, judgment, orientation, behaviors that pose a safety risk, behaviors that require supervision. If your loved one has dementia, an intellectual disability, a serious mental illness, or a traumatic brain injury, the assessor will want specifics.
Medical complexity. Diagnoses, medications, recent hospitalizations, falls, skin integrity, equipment needs.
Social and environmental supports. Who is helping, how often, whether that support is sustainable, whether the home environment supports the person’s needs.
What families can do to prepare
Three things will make the biggest difference.
Keep a running log of the past two weeks before the assessment. Hard data beats general impressions. Note specific incidents: which mornings did your father not recognize you, how many times did your mother need help in the bathroom, how many doses of medication were missed. The assessor will ask, and a notebook beats a guess.
Be honest about bad days. Many families instinctively present their loved one’s best self. That is human and kind, and it is also exactly what causes services to get cut. The assessment is supposed to capture the full range of need, including the days when the person cannot manage. If the typical week includes hard days, those days belong in the assessment.
Ask, in writing, for a copy of the completed assessment and the level-of-care determination. You have a right to this document. It is the basis for any appeal, and it is also the most useful record for the next redetermination.
When to bring in an independent assessor
Most assessments are completed by the case management agency itself. Those agencies do good work, and they are also under pressure from time, caseload, and sometimes payer-driven incentives. Families who feel an assessment did not capture the full picture have the right to request a second opinion from an independent licensed clinician.
An independent psychosocial assessment is most useful when the level-of-care decision is contested, when the family disagrees with a reduction in hours, or when the person’s condition has changed significantly since the last assessment. Done well, it produces a defensible clinical record that documents adaptive functioning, cognitive status, and the support the person actually needs to remain safely in the community.
The bottom line
The waiver assessment is the single most important document in your loved one’s long-term care plan. It is worth treating it that way. Track the details, tell the truth, and ask for the paper. If something feels wrong, you have options.
References
Friedman, C., & Pollio, D. E. (2021). United States Medicaid home and community-based services for people with intellectual and developmental disabilities: A scoping review. Journal of Policy and Practice in Intellectual Disabilities, 18(2), 89–95. https://doi.org/10.1111/jppi.12368
Kaiser Family Foundation. (2024). A look at waiting lists for Medicaid home- and community-based services from 2016 to 2024. https://www.kff.org/medicaid/a-look-at-waiting-lists-for-medicaid-home-and-community-based-services-from-2016-to-2024/