How Medicaid Cuts Hurt People with Disabilities 

If HR 1 passes in its current form, minority staff of the Joint Economic Committee estimate 31,804 Utahns would lose Medicaid. Over a third of Utah Medicaid enrollees have a disability. Medicaid is the largest publicly funded program supporting Utahns with disabilities

Medicaid is more than low-income health insurance. In addition to doctor’s visits, hospital stays, and medical equipment, it is frequently the only option for Utahns who need intensive mental health care or long-term services and supports not usually available in the private market.

Medicaid has mandatory and optional populations and services. The only mandatory groups are parents, children, foster youth, older adults, and medically needy/individuals with disabilities, all of whom generally must have income at or below 133% of the federal poverty level ($1,736/month this year). “Optional” services are not medically optional. It means a state is not required to offer a service. For example, physician, hospital, or nursing home care is largely mandatory. However, prescription drugs, much of mental health or substance use disorder treatment, and the home and community-based services described below are mostly optional.

60% of Utahns enrolled in Medicaid expansion have a behavioral health need. 30,000 have a mental illness and 19,000 have a substance use disorder. Even so, the state’s Office of Substance Use and Mental Health says public mental health and substance use providers saw almost 10,000 clients with no funding attached to them last year. Despite the obvious work remaining, over the last five years Utah wisely used its Medicaid expansion dollars to strengthen and expand its suicide prevention and crisis stabilization systems. It is now doing the same to reduce homelessness and criminal justice recidivism.

Medicaid supports Utahans with disabilities and those who are aging through home and community-based services:

• The Community Supports Waiver serves 6,000+ individuals with intellectual or developmental disabilities in supported employment, day programs, group homes, and more.
• The Community Transitions Waiver has allowed almost 500 people with intellectual or developmental disabilities to move from facilities into the community.

The Limited Supports Waiver offers 126 families a few lower-cost supports designed to make it easier to continue to care for their loved one at home,

• The Acquired Brain Injury Waiver offers personal budget assistance, homemaker services, supported employment, and other supports to help over 160 people remain as independent as possible.
• The Physical Disabilities Waiver offers personal assistant services with activities of daily living such as transferring to or from bed, dressing, toileting, and showering to nearly 100 people.
• The Medically Complex Children’s Waiver provides Medicaid to about 900 Utah kids as well as respite care and case management for their families.
• The Technology-dependent Waiver (offers nearly 150 individuals who rely on a tracheotomy, ventilator, or other technology to survive feeding therapy, skilled nursing, and other services.
• The New Choices Waiver helps nearly 2,000 mostly assisted living residents avoid placement in a nursing home.
• The Aging Waiver supports like emergency response systems, supplemental meals, home health aides, and companion/adult day services enable more than 350 Utahns to remain in their home. 

The House bill contains at least $625 billion dollars in cuts to Medicaid. They include:

• 1115 budget neutrality: a demonstration waiver cannot be approved or renewed if the change costs the federal government more. The state used an 1115 waiver to expand Medicaid. This could cause 73,500 Utahns with income of less than 138% FPL ($1,800/month this year) to lose coverage.
• Retroactive eligibility:Medicaid reimburses providers for care delivered up to three months before an enrollee’s application. The proposal limits it to one month. In 2015, HHS required Indiana to continue offering some retroactive coverage to parents and caretakers relatives. The state reported nearly 14% of this group needed retroactive coverage. With reduced retroactive coverage, some individuals will incur significant medical expenses, not be able to access care at all, or experience a substantial delay in necessary services. Recognizing individuals may be not know they are eligible, and that the sudden onset of illness often prevents individuals from applying. as recently as June 2024, CMS noted that retroactive eligibility protects low-income individuals from medical debt and mitigates adverse health outcomes while ensuring the financial stability of hospitals and safety net providers. Given nearly 30% of U.S. households have less than $1,000 in savings and 40% of adults do not have enough savings to cover a $400 emergency, thousands of dollars in unexpected costs are simply unaffordable. Limiting retroactive eligibility will also only increase the massive medical debt Utahns already face.
• Eligibility checks: states will have to check Medicaid expansion enrollee eligibility every 6 months. More checks will unnecessarily increase Medicaid administrative expenses, create more burden for eligibility workers, and cause more eligible individuals to lose coverage due to clerical errors or red tape. Frequent churning leads to gaps in care – particularly for chronic conditions – that increase hospitalizations and emergency department use when individuals re-enroll. Jumping through extra paperwork hoops could be a barrier for Utahns with behavioral health needs and/or those who are homeless, potentially putting the recent progress noted above in jeopardy.
• Community engagement: starting at the end of 2026 an expansion applicant must demonstrate at least 80 hours of work, school, or community service at least a month before coverage begins. Compliance needs to be documented at least every six months to maintain eligibility. Individuals unable to comply will be locked out of Marketplace coverage as well. A KFF study found more than 40% of non-SSI adult Medicaid enrollees already work full-time, with another 18% working part-time. In 2019, Utah admitted only an estimated 10% of expansion enrollees would likely be subject to its proposal. Unfortunately, people with disabilities often have a hard time accessing SSI and SSDI, making it challenging to demonstrate they should be exempt. In Arkansas, some 18,000 beneficiaries lost access to affordable and quality care, probably because a good number of them simply could not comply. A work requirement may not generate a good return on investment either. The Congressional Budget Office reported “…work requirements in SNAP and Medicaid have reduced benefits more than they have increased people’s earnings.” Georgia estimated implementation of its Medicaid work requirements would cost $2,490 per person, but the real cost has been about $13,360 per person. Indiana estimated its proposal would constitute close to 16% of the coverage cost for enrolled members.
• Medicaid eligibility and enrollment rule delay: using their recent study in the New England Journal of Medicine, researchers project 18,200 additional deaths per year until 2035 because 1.38 million low-income Medicare beneficiaries will lose easier access to Medicaid-subsidized drug coverage or Medicaid itself.
• Copays: can be up to $35 for expansion enrollees above 100% FPL ($1,305/month this year). A provider can deny services if a client cannot pay. Utah currently chargers $4 for most services. Nationally, 10% of individuals under age 65 who depend on HCBS and 20% who need other LTSS – often daily, weekly, or monthly – are covered through expansion.
• Home equity limits: enrollees with disabilities who need long-term services and supports, like those provided through the waivers described above, to live as independently as possible in their community can have almost $1.1 million in home equity in urban areas and $750,000 in rural areas. Beginning in 2028, the amount is capped at $1 million, with no inflationary factor. As caregivers age, more individuals with disabilities are likely to inherit a home worth more than that simply because of rising property values. For instance, the median price of a home in Draper is $943,000 and it has risen by 3% over the last year in Sandy. Consequently, older Utahns may soon be unable to age-in-place and facility-based care can be 2-5 times more expensive.
• Provider taxes: are often paid by hospitals and other facilities. Freezing them at the current level means Utah might have less flexibility to respond to a growing population, more complex needs, or increasing costs. If the state is forced to make up the difference, fewer Utahns who are aging or have disabilities may be able to access quality care in nursing homes or immediate care facilities for individuals with intellectual disabilities.
• AI: prohibits states from regulating the use of algorithms in eligibility, need assessment, and prior authorization, etc. During the pandemic, we saw the possibility for bias against patients with disabilities in states’ crisis standards of care. We are also concerned data models may not be broad enough or flexible enough to account for a person’s unique needs.

We worry any of these choices will threaten even the modest progress made by Utah’s behavioral health system and strain our already overburdened providers further. We also fear that, especially with the challenge of recruiting and retaining a highly qualified direct care workforce in a competitive economy, Utahns with disabilities and those who are aging may be forced back into institutions.

What can I do?  

Share stories with state and local leaders about how Medicaid has helped you or your loved one. 

Follow our social media and stay posted for action alerts when specific plans to cut Medicaid are proposed. 

Tell our federal delegation not to cut Medicaid.

• Use this form.
• Or Or call them at 866-426-2631 and tell them: Protect Medicaid. No cuts. No caps. No compromises.
• Provide public comments on the state request to add work requirements to Medicaid expansion (Community Engagement Amendment).
• Visit the Protect Medicaid Utah website for additional information.