Families urge adding adult services to Utah's technology-dependent Medicaid waiver

Advocates and state officials told the Social Services Appropriations Subcommittee that adults enrolled in Utah's Technology Dependent Medicaid waiver lack access to the community, employment and day services available on other waivers.

At a July committee hearing, Tina Purcelles said the Technology Dependent waiver provides private-duty nursing that allows medically complex children and adults who use ventilators or tracheostomies to live at home, but it does not include the adult-oriented community supports provided under waivers administered by the Division of Services for People with Disabilities (DSPD). “If we were to compare the waivers, DSPD's all have an adult component if there is an adult on the waiver,” Purcelles said. She told the committee that in a 2023 study with the department, the program served about 145 people overall and that about 40 adults at that time appeared to lack access to adult supports.

The omission means, Purcelles said, that adults on the Technology Dependent waiver often have no access to day programs, vocational rehabilitation, work training or other community supports and that families — typically aging parents — provide ongoing care. “For most of us, it's not a choice,” she said.

Deputy Director Tanya Hales of the Utah Department of Health and Human Services told the committee that states design Home and Community-Based Services (HCBS) waivers with broad flexibility and that the Technology Depedent waiver (approved in Utah in 1995 and operated by Medicaid) was originally structured primarily to provide private-duty nursing and state-plan medical supplies to children under 21. Hales said an amendment to add adult services would require legislative direction, a state general-fund appropriation and a formal amendment submitted to the Centers for Medicare & Medicaid Services. “These costs could change considerably depending on what we decided to do,” she said.

State staff and witnesses offered competing cost illustrations. Hales's office estimated that if roughly 40 adults used new services two days a week (about eight hours a day), the additional general-fund cost would be about $730,000 a year; higher utilization (four days a week) could raise that estimate to about $1.46 million. Senator Baldurian calculated a different scenario during questioning, using an annual per-person figure of $124,051.20 multiplied by 50 people to arrive at about $6.2 million a year; Purcelles and Hales emphasized that the population in question is small (they repeatedly cited a figure of about 40'to'50 adults) and that different service mixes and delivery models would change estimates.

Committee members asked practical questions: whether people can be enrolled in both the Technology Dependent waiver and DSPD waivers (the answer the committee recorded was no), whether a new benefit would jump ahead of other people on existing DSPD wait lists (witnesses said that was not the proposal) and how nursing requirements differ between waivers. Hales said the Technology Dependent waiver covers private-duty nursing (a skilled nursing service) and some Medicaid state-plan items, but lacks day supports, supported employment and similar community services typical on DSPD waivers.

Purcelles reviewed the advocacy history: families raised the issue with lawmakers and the department starting about 2018; in 2023 the governor asked the department to study the issue and the group requested inclusion on the governor's budget list; the request made the governor's initial recommendations but did not survive to the final enacted budget.

No committee motion or vote specifically changed policy for the Technology Dependent waiver at the hearing. Hales told the committee the department is available to work with legislators on options and that any change would require legislative direction and a federal waiver amendment.

Why it matters: adding adult-oriented day, employment and community supports to the Technology Dependent waiver would explicitly extend services beyond the nursing and medical supplies currently covered, potentially changing options for dozens of adults with medical technology needs and affecting caregiver burden and state Medicaid spending.

The committee did not adopt a bill or funding change on the record at the meeting; the topic was discussed as part of the department's broader fiscal briefing and remains eligible for future legislative action.