By Tony Leys for KFF Health News.
Broadcast version by Mark Moran for Big Sky Connection reporting for the KFF Health News-Public News Service Collaboration

The blue-and-white highway sign for the eastbound rest stop near here displays more than the standard icon of a person in a wheelchair, indicating facilities are accessible to people who can’t walk. The sign also shows a person standing behind a horizontal rectangle, preparing to perform a task.

The second icon signals that this rest area along Interstate 80 in western Iowa has a bathroom equipped with a full-size changing table, making it an oasis for adults and older children who use diapers because of disabilities.

“It’s a beacon of hope,” said Nancy Baker Curtis, whose 9-year-old son, Charlie, has a disability that can leave him incontinent. “I’m like, ‘Oh my gosh, we’re finally there.’”

The white changing table is 6 feet long and can be lowered and raised with a handheld controller wired to an electric motor. When not in use, the table folds up against the wall.

The table was recently installed as part of a national effort to make public bathrooms more accessible in places like airports, parks, arenas, and gas stations. Without such options, people with disabilities often wind up being changed on bathroom floors, in cars, or even on the ground outside.

Many families hesitate to go out because of the lack of accessible restrooms. “We all know somebody who’s tethered to their home by bathroom needs,” Baker Curtis said. She doesn’t want her son’s life to be limited that way. “Charlie deserves to be out in the community.”

She said the need can be particularly acute when people are traveling in rural areas, where bathroom options are sparse.

Baker Curtis, who lives near Des Moines, leads the Iowa chapter of a national group called “Changing Spaces,” which advocates for adult-size changing tables. The group offers an online map showing scores of locations where they’ve been installed.

Advocates say such tables are not explicitly required by the federal Americans with Disabilities Act. But a new federal law will mandate them in many airports in coming years, and states can adopt building codes that call for them. California, for example, requires them in new or renovated auditoriums, arenas, amusement parks, and similar facilities with capacities of at least 2,500 people. Ohio requires them in some settings, including large public facilities and highway rest stops. Arizona, Illinois, Maryland, Minnesota, and New Hampshire also have taken steps to require them in some public buildings.

Justin Boatner of Arlington, Virginia, advocates for more full-size changing tables in the Washington, D.C., area. Boatner, 26, uses a wheelchair because of a disability similar to muscular dystrophy. He uses diapers, which he often changes himself.

He can lower an adjustable changing table to the height of his wheelchair, then pull himself onto it. Doing that is much easier and more hygienic than getting down on the floor, changing himself, and then crawling back into the wheelchair, he said.

Boatner said it’s important to talk about incontinence, even though it can be embarrassing. “There’s so much stigma around it,” he said.

He said adult changing tables are still scarce, including in health care facilities, but he’s optimistic that more will be installed. Without them, he sometimes delays changing his diaper for hours until he can get home. That has led to serious rashes, he said. “It’s extremely uncomfortable.”

Iowa legislators in recent years have considered requiring adult changing tables in some public restrooms. They declined to pass such a bill, but the discussion made Iowa Department of Transportation leaders aware of the problem. “I’m sorry to say, it was one of those things we’d just never thought of,” said Michael Kennerly, director of the department’s design bureau.

Kennerly oversees planning for rest stops. He recalls an Iowan telling him about changing a family member outside in the rain, with only an umbrella for shelter. Others told him how they changed their loved ones on bathroom floors. “It was just appalling,” he said.

Iowa began installing adult changing tables in rest stops in 2022, and it has committed to including them in new or remodeled facilities. So far, nine have been installed or are in the process of being added. Nine others are planned, with more to come, Kennerly said. Iowa has 38 rest areas equipped with bathrooms.

Kennerly estimated it costs up to $14,000 to remodel an existing rest-stop bathroom to include a height-adjustable adult changing table. Incorporating adult changing tables into a new rest stop building should cost less than that, he said.

Several organizations offer portable changing tables, which can be set up at public events. Some are included in mobile, accessible bathrooms carried on trailers or trucks. Most permanent adult changing tables are set up in “family restrooms,” which have one toilet and are open to people of any gender. That’s good, because the act of changing an adult is “very intimate and private,” Baker Curtis said. It’s also important for the tables to be height-adjustable because it’s difficult to lift an adult onto a fixed-height table, she said.

Advocates hope adult changing tables will become nearly as common as infant changing tables, which once were rare in public bathrooms.

Jennifer Corcoran, who lives near Dayton, Ohio, has been advocating for adult changing tables for a decade and has seen interest rise in recent years.

Corcoran’s 24-year-old son, Matthew, was born with brain development issues. He uses a wheelchair and is unable to speak, but he accompanies her when she lobbies for improved services.

Corcoran said Ohio leaders this year designated $4.4 million in federal pandemic relief money to be distributed as grants for changing-table projects. The program has led to installations at Dayton’s airport and art museum, plus libraries and entertainment venues, she said.

Ohio also is adding adult changing tables to rest stops. Corcoran said those tables are priceless because they make it easier for people with disabilities to travel. “Matthew hasn’t been on a vacation outside of Ohio for more than five years,” she said.

Kaylan Dunlap serves on a committee that has worked to add changing-table requirements to the International Building Code, which state and local officials often use as a model for their rules.

Dunlap, who lives in Alabama, works for an architecture firm and reviews building projects to ensure they comply with access standards. She expects more public agencies and companies will voluntarily install changing tables. Maybe someday they will be a routine part of public bathrooms, she said. “But I think that’s a long way out in the future, unfortunately.”


Tony Leys wrote this story for KFF Health News.


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Oregon's right to repair law, which increases consumers' ability to repair their own electronics, takes effect this week.

The law requires manufacturers to provide access to replacement parts, tools, manuals, as well as digital keys needed so people can fix their own devices.

Charlie Fisher, state director of the Oregon State Public Interest Research Group, helped author the law. He said it needs to go further, which is why, along with disability justice advocates, he is pushing for wheelchairs to be included. Fisher pointed out the current process for getting wheelchairs fixed is overly complicated and takes months.

"Just simple barriers that shouldn't exist are really what we're trying to address in this wheelchair right to repair law," Fisher explained. "It just seems like common sense."

Fisher noted Sen. Janeen Sollman, D-Hillsboro, will introduce two bills this year to expand the right to repair law. One bill would add protections for wheelchairs, the other would simplify the repair process when going through Medicaid.

Wren Grabham, a disability justice activist, has been working on the bills and said additions to the law would require wheelchair manufacturers to post their manuals and allow a person to fix their chair without voiding their warranty.

Grabham noted when she was 16, her electric wheelchair began shutting off and giving an error code. Because there was no public manual for the chair, she did not know what the code meant or if the chair was safe to keep driving. Grabham added fixing it included getting insurance approval, so it took a long time.

"I had to pretty much use an old chair that didn't fit me for six months," Grabham recounted.

Grabham emphasized even simple, routine fixes, like getting a new tire or battery for her chair, take months because she has to prove new parts are needed.

"Even though it's something that we could fix in a weekend, if we were able to actually get the parts to fix them," Grabham stressed.

The Public Interest Research Group's research found being able to fix phones, computers and appliances instead of buying new ones will save the average Oregon household more than $300 a year.


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Nevada education experts say literacy rates are improving, but aren't where they should be.

Nevada's third- through eighth-grade students have improved their English Language Arts proficiency rate to above 41%.

Julie Bowers is the director of the Nevada's Department of Education's Office of Inclusive Education.

She said children who lack literacy proficiency are more likely to struggle academically, increasing the chances of dropping out of school and decreasing their likelihood of finding a job down the line.

The department says it is committed to supporting districts in the early identification of students, so that "interventions" can start sooner rather than later - including for those with disabilities.

"We have unique ways of meeting their literacy," said Bowers. "We have different interventions that we can use for kids with more needs for assisted technology or accommodations within the classroom. But we also have that tiered instruction level."

Bowers said Nevada has a "tiered approach." She said the "multi-tiered system of supports" integrates data and instruction to maximize student achievement and development.

Bowers added that as students are identified as having certain needs, they're given the assistance they need to grow.

Mandy Leytham is also with the state's Department of Education - as an education programs professional with the Read By Grade 3 team.

She said their data indicates reading achievement is rising across all grade levels, including students with Individualized Education Programs.

"Our graduation rates just came out, and we are seeing an increase in graduation rates - including those with students who have IEPs," said Leytham. "So are we where necessarily we want to be at this moment in time, not necessarily, but we are headed towards that direction."

Leytham said parents concerned about their child's progress should have open and honest conversations with their child's teacher, to ensure they reach the best learning outcomes.

"We do have a Read by Grade 3 law, and parents should be not only notified, but they are involved in that planning and decision making on behalf of their students," said Leytham. "So the schools should be involving the parents. Schools just can't do it alone."

By Tony Leys for KFF Health News.
Broadcast version by Mark Moran for Iowa News Service reporting for the KFF Health News-Public News Service Collaboration

Hundreds of people who were separated from society because they had disabilities are buried in a nondescript field at the former state institution here.

Disability rights advocates hope Iowa will honor them by preventing the kind of neglect that has plagued similar cemeteries at other shuttered facilities around the U.S.

The southwest Iowa institution, called the Glenwood Resource Center, was closed this summer in the wake of allegations of poor care. The last of its living residents were moved elsewhere in June. But the remains of about 1,300 people will stay where they were buried on the grounds.

The graveyard, which dates to the 1800s, covers several acres of sloping ground near the campus's brick buildings. A 6-foot-tall, weathered-concrete cross stands on the hillside, providing the most visible clue to the field's purpose.

On a recent afternoon, dried grass clippings obscured row after row of small stone grave markers set flat in the ground. Most of the stones are engraved with only a first initial, a last name, and a number.

"If somebody who's never been to Glenwood drove by, they wouldn't even know there was a cemetery there," said Brady Werger, a former resident of the facility.

During more than a century of operation, the institution housed thousands of people with intellectual disabilities. Its population declined as society turned away from the practice of sequestering people with disabilities and mental illness in large facilities for decades at a time. The cemetery is filled with residents who died and weren't returned to their hometowns for burial with their families.

State and local leaders are working out arrangements to maintain the cemetery and the rest of the 380-acre campus. Local officials, who are expected to take control of the grounds next June, say they'll need extensive state support for upkeep and redevelopment, especially with the town of about 5,000 people reeling from the loss of jobs at the institution.

Hundreds of such places were constructed throughout the U.S. starting in the 1800s. Some, like the one in Glenwood, served people with disabilities, such as those caused by autism or seizure disorders. Others housed people with mental illness.

Most of the facilities were built in rural areas, which were seen as providing a wholesome environment.

States began shrinking or closing these institutions more than 50 years ago. The shifts were a response to complaints about people being removed from their communities and subjected to inhumane conditions, including the use of isolation and restraints. In the past decade, Iowa has closed two of its four mental hospitals and one of its two state institutions for people with intellectual disabilities.

After closures in some other states, institutions' cemeteries were abandoned and became overgrown with weeds and brush. The neglect drew protests and sparked efforts to respectfully memorialize people who lived and died at the facilities.

"At some level, the restoration of institutions' cemeteries is about the restoration of humanity," said Pat Deegan, a Massachusetts mental health advocate who works on the issue nationally. Deegan, who was diagnosed with schizophrenia as a teenager, sees the neglected graveyards as symbolic of how people with disabilities or mental illness can feel as if their individual identities are buried beneath the labels of their conditions.

Deegan, 70, helped lead efforts to rehabilitate a pair of overgrown cemeteries at the Danvers State Hospital near Boston, which housed people with mental illness before it closed in 1992. More than 700 former residents were buried there, with many graves originally marked only with a number.

The Massachusetts hospital's grounds were redeveloped into a condominium complex. The rehabilitated cemeteries now have individual gravestones and a large historical marker, explaining what the facility was and who lived there. The sign notes that some past methods of caring for psychiatric patients seem "barbarous" by today's standards, but the text portrays the staff as well-meaning. It says the institution "attempted to alleviate the problems of many of its members with care and empathy that, although not always successful, was nobly attempted."

Deegan has helped other groups across the country organize renovations of similar cemeteries. She urges communities to include former residents of the facilities in their efforts.

Iowa's Glenwood Resource Center started as a home for orphans of Civil War soldiers. It grew into a large institution for people with disabilities, many of whom lived there for decades. Its population peaked at more than 1,900 in the 1950s, then dwindled to about 150 before state officials decided to close it.

Werger, 32, said some criticisms of the institution were valid, but he remains grateful for the support the staff gave him until he was stable enough to move into community housing in 2018. "They helped change my life incredibly," he said. He thinks the state should have fixed problems at the facility instead of shutting it.

He said he hopes officials preserve historical parts of the campus, including stately brick buildings and the cemetery. He wishes the graves had more extensive headstones, with information about the residents buried there. He would also like to see signs installed explaining the place's history.

Two former employees of the Glenwood facility recently raised concerns that some of the graves may be mismarked. But officials with the Iowa Department of Health and Human Services, which ran the institution, said they have extensive, accurate records and recently placed stones on three graves that were unmarked.

Department leaders declined to be interviewed about the cemetery's future. Spokesperson Alex Murphy wrote in an email that while no decisions have been made about the campus, the agency "remains committed to ensuring the cemetery is protected and treated with dignity and respect for those who have been laid to rest there."

Glenwood civic leaders have formed a nonprofit corporation that is negotiating with the state over development plans for the former institution. "We're trying to make the best of a tough situation," said Larry Winum, a local banker who serves on the new organization's board.

Tentative plans include tearing down some of the existing buildings and creating up to 900 houses and apartments.

Winum said redevelopment should include some kind of memorial sign about the institution and the people buried in the cemetery. "It will be important to us that those folks be remembered," he said.

Activists in other states said properly honoring such places takes sustained commitment and money.

Jennifer Walton helped lead efforts in the 1990s to properly mark graves and improve cemetery upkeep at state institutions in Minnesota.

Some of the cemeteries are deteriorating again, she said. Activists plan to ask Minnesota legislators to designate permanent funding to maintain them and to place explanatory markers at the sites.

"I think it's important, because it's a way to demonstrate that these spaces represent human beings who at the time were very much hidden away," Walton said. "No human being should be pushed aside and ignored."

On a recent day, just one of the Glenwood graves had flowers on it. Retired managers of the institution said few people visit the cemetery, but amateur genealogists sometimes show up after learning that a long-forgotten ancestor was institutionalized at Glenwood and buried there.

Former grounds supervisor Max Cupp said burials had become relatively rare over the years, with more families arranging to have deceased residents' remains transported to their hometown cemeteries.

One of the last people buried in the Glenwood cemetery was Kenneth Rummells, who died in 2022 at age 71 after living many years at the institution and then at a nearby group home overseen by the state. His guardian was Kenny Jacobsen, a retired employee of the facility who had known him for decades.

Rummells couldn't speak, but he could communicate by grunting, Jacobsen said. He enjoyed sitting outside. "He was kind of quiet, kind of a touch-me-not guy."

Jacobsen helped arrange for a gravestone that is more detailed than most others in the cemetery. The marker includes Rummells' full name, the dates of his birth and death, a drawing of a porch swing, and the inscription "Forever swinging in the breeze."

Jacobsen hopes officials figure out how to maintain the cemetery. He would like to see a permanent sign erected, explaining who is buried there and how they came to live in Glenwood. "They were people too," he said.


Tony Leys wrote this story for KFF Health News.


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