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We write today to raise an urgent concern that affects not only our family, but hundreds if not thousands of Nebraska families who rely on live-in caregivers through the Aged and Disabled (AD) Waiver. The Nebraska Department of Health and Human Services has proposed a 40-hour cap on live-in caregiving and it is simply incompatible with the realities of disability care. If enacted, it will disrupt stable caregiving relationships and place vulnerable individuals at risk of inconsistent, fragmented, and ultimately inadequate support.

Live-in caregiving is not a conventional job with predictable hours. It is a continuous responsibility rooted in trust, familiarity, and deep personal understanding. The relationship between a caregiver and the person they support cannot be paused after 40 hours without consequence. These bonds—carefully built over time—are essential to safety, emotional well-being, and quality of life. Limiting caregivers to an arbitrary weekly cap undermines this bond and jeopardizes the very stability the AD Waiver is meant to protect.

The 40-hour cap fails to reflect the complex, round-the-clock needs of individuals who depend on live-in care, especially those who are medically complex requiring trachiostomy, ventilator, or epilepsy support. Keeping the current limit of allowable hours at 112 or increasing it further would better align policy with reality. It would acknowledge that caregiving is not bound by a clock and would allow families to continue providing care in homes—not institutions—where individuals can live with dignity, familiarity, and autonomy.

Research consistently shows that continuity of care is vital for individuals with disabilities. The CDC reports that more than 61 million adults in the United States live with a disability, many of whom require daily assistance. Stable, uninterrupted caregiving leads to better health outcomes, fewer emergencies, and stronger emotional well-being. Policies that disrupt this continuity risk increased hospitalizations and premature placement in nursing facilities—outcomes that are both harmful to individuals and more costly to the state.

Additionally, the National Alliance for Caregiving reports that over 53% of caregivers experience significant stress due to insufficient time and support. When caregivers are forced to limit their hours or hand off care to unfamiliar providers, burnout increases and quality of care suffers. Allowing live-in caregivers to work additional hours supports sustainability, reduces turnover, and ensures that care remains compassionate, consistent, and effective.

In short, limiting live-in caregivers to 40 hours per week is a lose-lose-lose. It degrades the quality of care for those with disabilities, increases the stresses placed on caregivers, and is more costly for taxpayers. 

We urge DHHS to reconsider this cap and to view caregiving not as a line item, but as a lifeline. This is a call for policy grounded in compassion, realism, and respect for the lives it governs. Disabled individuals deserve the opportunity to remain safely in their homes, supported by caregivers who know them best.

For the stability, safety, and dignity of all Nebraskans served under the AD Waiver, we implore you to sign this petition. Together, we can advocate for a necessary and humane change—one that honors both those who need care and those who dedicate their lives to providing it.

To further help our cause, please consider leaving a public comment on the DHHS website using this link: https://dhhs.ne.gov/Pages/DD-Public-Comment.aspx

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