The Disability Law Center sued Utah. Now lawmakers want Gov. Cox to consider cutting off its funding.

When Benjamin Owen’s teachers at a school for children with autism suggested he attend a typical elementary school, where they believed interacting with other children would best help him thrive, his parents eagerly enrolled him to learn alongside their neighbors.

But when the district moved Owen to another school that was a “terrible fit” because the local one was short on resources, his mother, Juliette White, turned to the Disability Law Center, a nonprofit that has helped the family navigate the barriers to accessing an education for the now-18-year-old Owen.

Now the future of the organization — which has aided disabled Utahns in asserting their rights for nearly 50 years and is in the sights of lawmakers this year — is uncertain.

As the Disability Law Center sues over a law the Utah Legislature passed last year creating a separate, more restrictive guardianship system for people with “severe intellectual disabilities,” lawmakers are pushing Utah Gov. Spencer Cox to consider stripping the group of its funding, all of which comes from the federal government.

A resolution from Sen. Todd Weiler, R-Woods Cross, calls on Cox to review the Disability Law Center’s status as Utah’s protection and advocacy agency — a designation that allows the organization to access federal grants to safeguard the legal and human rights of people with disabilities.

The Senate Judiciary, Law Enforcement, and Criminal Justice Committee approved Weiler’s SJR7 along party lines in early February, and it cleared a first vote in the Senate 16-10. The resolution now awaits a final Senate vote before it’s sent to the House of Representatives.

And a second bill, SB154, would require the Disability Law Center to provide an annual report to the Legislature — a measure the organization says it supports.

If the resolution passes, it would merely send a message — Cox would not be required to act on it. Spokespeople for the governor’s office did not respond to questions about his position on the resolution or the Disability Law Center’s protection and advocacy designation.

“The governor can certainly recommend redesignation based on good cause. I don’t think that is present here,” Nate Crippes, the Disability Law Center’s public affairs attorney, told lawmakers of the bill.

Roots of the redesignation push

Three attorneys with disabled family members sat next to Weiler at a desk as he explained his resolution to a Senate committee last month. Each criticized the Disability Law Center for challenging a 2025 law that created a separate guardianship system for some people with disabilities.

“The only reason I’m bringing this bill and the next bill,” Weiler said, “is because people with disabilities and families caring for people with disabilities have told me that they don’t feel like the DLC is advocating for them.”

Lisa Thornton told lawmakers she has a 22-year-old daughter with Prader-Willi syndrome. Her legal practice, according to Thornton’s website, is focused on “securing guardianship for adults with special needs and drafting special needs trusts and general estate planning documents for families.”

Comments from the public in support of Weiler’s resolution from Thornton and others largely focused on the Disability Law Center declining to help family members secure guardianship over disabled individuals. But federal law prohibits protection and advocacy agencies from providing guardianship services — providing such assistance would render them unable to represent the disabled individual, if needed.

Currently, the Disability Law Center receives funding to advocate for people with a wide range of disabilities, including their access to housing and their right to vote.

The organization has “chosen to only help the higher functioning individuals with disabilities avoid or get out of guardianship by suing their parents,” Thornton alleged. “They refuse to help those with severe intellectual disabilities get the protections they need through guardianship to prevent abuse and exploitation.”

In the lawsuit it filed last year seeking to undo Sen. Keven Stratton’s, R-Orem, SB199, the Disability Law Center argued the new law would make it easier for guardians to isolate people with disabilities and subject them to abuse.

SB199 gives a guardian the ability to control nearly every aspect of a disabled adult’s life, including: where they live, what education they receive, which people they can have contact with, what medical and mental health care they can access, and whether they are allowed to consume drugs, tobacco, alcohol, pornography and “any legal substance or activity that would be harmful to the health and wellbeing of the individual.”

And disabled people subject to such a guardianship have fewer avenues than they did previously to challenge being placed in another adult’s custody.

The Disability Law Center’s complaint describes the guardianship created under SB199 as “more restrictive than any authorized elsewhere in Utah law.” Pushing some disabled people into a separate, harsher guardianship system violates the Americans with Disabilities Act, the organization alleges.

White, who is also an attorney, said she sees the law differently than the other lawyers and family members who joined Weiler in urging the governor to reevaluate his protection and advocacy agency designation — from her perspective, the Disability Law Center is representing her son in challenging it.

“It is not written in a way that I find reassuring,” White said of SB199. “There are a lot of terms that are undefined and vague, and the way it’s currently drafted leaves tremendous room for, I think, real trouble.”

A world ‘as free for him as possible’

Owen, who likes riding his scooter in the church parking lot across from his house, pushing a shopping cart around Whole Foods on Saturdays and sitting next to his older brother while they spar in the video game Brawlhalla, is currently in a vocational rehabilitation program preparing for his first job. He is “so much more capable than people will assume,” White, explained, and will live a much better life if he’s allowed to make his own choices.

“My husband and I are obviously advocating for and trying to craft a world for Ben that is as free for him as possible,” White said. “But if we’re no longer here, you know, we don’t have a large network of family support. He is left to the language of things like this statute and the judgment of whoever is around, and that just terrifies me.”

The Disability Law Center said in court filings it has received over 350 calls over the last four years related to helping disabled Utahns who are or could be subject to guardianship. Those calls have reportedly increased by 33% in the months since the new law took effect.

Attacks on the Disability Law Center have also come from right-leaning groups pushing Utah to shift the state’s approach to homelessness and expand its civil commitment practices by using the courts to force unsheltered people with mental illness to undergo inpatient or outpatient treatment.

In a memo published last year, the Cicero Institute recommended Utah respond to an executive order on addressing homelessness from President Donald Trump by replacing “Disability Law Center Utah, Utah’s designated Protection and Advocacy for Individuals with Mental Illness Act (PAIMI) advocate group, with a nonprofit or state office that supports a more balanced approach to civil commitment.”

In an op-ed published by Utah News Dispatch, the Disability Law Center responded to criticisms from the Cicero Institute, which was founded by tech billionaire and prominent Republican donor Joe Lonsdale.

“The expansion of civil commitment, forced treatment, and institutionalization are not novel ideas,” the op-ed reads. “They roll back decades of progress in behavioral health treatment. Utahns deserve solutions that lift people up — not lock them away.”

‘I don’t want to live here’

In her work as an attorney, White has seen firsthand how depriving disabled people of the ability to make basic life choices impairs their quality of life.

White, a vice president at a prominent Salt Lake City-based law firm, helped the Disability Law Center file and win a class-action lawsuit against Utah for segregating hundreds of Utahns with intellectual and developmental disabilities into private “intermediate care facilities.” Once placed in one of those facilities, it became difficult to leave and interact with the larger community.

After spending what she described as countless hours meeting with disabled Utahns living in intermediate care facilities, White said, she kept hearing from people, “I don’t want to live here.”

“But no one had ever bothered to sit down and, you know, register that and create a way for them to get out,” she said.

The lead plaintiff in the case was Staci Christensen, who has Down syndrome. She told reporters after the lawsuit was filed in 2018 that she wanted to leave the facility she lived in so she would be allowed to date, go to college and spend more time working at the Golden Corral in Orem.

White thought about whether her son might one day end up in a situation where he feels trapped as she spoke to each plaintiff in the case, and she said those thoughts have returned with the passage of Utah’s new guardianship law and as the Disability Law Center sees its funding threatened.

Disabled Utahns who spoke out against Weiler’s efforts during the February committee hearing say there aren’t any organizations in Utah that could fill the Disability Law Center’s role. According to its website, in fiscal 2024, the nonprofit helped 3,665 people.

“If this whole system doesn’t improve, that’s where he might end up if somebody gets a full guardianship over him and decides that’s the easier way to do it,” White said. “I’m trying to avoid a moment in his life where he says, ‘I don’t want to be here,’ and he’s told, ‘You don’t get to make that choice.’”

Note to readers • This story is available to Salt Lake Tribune subscribers only. Thank you for supporting local journalism.