NEW YORK – Un estudio de 10 años sobre la salud busca la participación de una amplia variedad de personas –incluyendo las discapacitadas– para ayudar a los investigadores a crear un plan de atención de la salud a la medida de cada quién.

Una investigación médica de largo tiempo finalmente pondrá a la vista las necesidades de la población que frecuentemente es ignorada. Le llaman Programa de Investigación “Todos Nosotros” (“All of Us”) y se calcula que durará al menos 10 años. El estudio está diseñado para ayudar a los investigadores a desarrollar cuidados médicos basados en necesidades de la vida real de los pacientes individuales. Mientras que las investigaciones a gran escala tienden a ver sólo a grupos selectos, éste espera involucrar a un millón de personas de todo el espectro de la sociedad completa.

Elizabeth Cohn, R.N., P.D. Líder de Participación Comunitaria en el Consorcio de Medicina de Precisión, de la Ciudad de New York, destaca que estudiar condiciones relativamente raras puede tener beneficios para la atención de la salud en general. Así que la amplia participación de gente con discapacidades que participarán en este estudio, tendrá dos impactos principales.

“Está el beneficio inmediato de ser incluido en el estudio, lo que puede ser muy empoderador, ayudar a cubrir las necesidades de la gente – y luego, la gran visión de una mejor salud para nuestra nación.”

Quienes quieran participar en el estudio pueden registrarse en ‘joinallofujs.org/together'

Jess Powers, directora de comunicación y educación en el Centro para la Independencia de los Discapacitados New York (“Center for Independence of the Disabled New York”), dice que a los participantes se les pedirá responder preguntas sobre su salud, familia, hogar y trabajo, y tendrán opciones para aportar expedientes electrónicos de su salud y muestras biológicas.

”Dependiendo de cuánta información quiera compartir la gente; es su decisión. La idea es que esos datos hechos anónimos estén disponibles para que los investigadores hagan avances médicos.”

Los investigadores esperan que con el tiempo la gente quiera involucrarse en el estudio, pero es libre de salirse cuando sea, sin sanción.

Hablando no sólo como investigadora de la salud, sino también como madre de una criatura con necesidades especiales, Cohn agrega que este tipo de estudio exhaustivo de larga duración hace mucho que hacía falta.

“Es una oportunidad para que se escuchen todas las voces y todas las inquietudes. Sentimos que ya llegó el tiempo de que la medicina sea inclusiva, como otras cosas son inclusivas.”

El estudio Todos Nosotros (“All of Us”) es un proyecto de los Institutos Nacionales de la Salud (“National Institutes of Health”).

Más información en allofus.nih.gov.

Ballot questions, like one dealing with property taxes, are getting attention this election season in North Dakota. But another gets to the heart of how people with disabilities are described by state agencies and public documents.

If Measure 1 is approved, North Dakota's Constitution would be amended to replace outdated terminology.

For example, a "state hospital for the insane" would be changed to a "state hospital for the care of individuals with mental illness."

Veronica Zietz, executive director of the North Dakota Protection and Advocacy Project, said a successful outcome would be a positive step for the state.

"This ballot measure really signifies that how we talk about people matters," said Zietz, "and it can be an indication of dignity and respect."

This specific ballot question arose from the last legislative session after disability rights advocates and lawmakers huddled together. Similar efforts are unfolding in states like Nevada as well.

According to the Centers for Disease Control and Prevention, more than 150,000 North Dakota adults have some form of disability.

Zietz said creating more acceptance is likely to affect communities more than you might think.

"Chances are that you all know somebody that has a disability, or care about somebody that has a disability or a mental health condition," said Zietz. "And I guess I feel like this ballot measure is an opportunity to show support for that person that you care about."

She said it's important to remember that people with disabilities also are successful business owners or parents, and play many roles in society.

While there's no opposition to the ballot question, over time, differing views have emerged within the disability community over which terminology is preferred.




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State data show more Iowans with disabilities are employed. And advocates with the Iowa Developmental Disabilities Council point out that - during this National Disability Employment Awareness Month - the increase is positive, but barriers remain.

The latest numbers show almost 91,000 Iowans with disabilities are employed - half of them at least part-time.

Kristine Graves is one of them. She answers the phones at the Iowa Warm Line - a service for people who need someone to talk with but are not facing an immediate mental health crisis.

Graves said while being employed gives her purpose, there is a downside.

"The money part - it causes a barrier to getting services that you might need, because you're making more money," said Graves. "They didn't give you that time - like, 'We'll give you six months to get cut off.' They just kind of did it overnight."

The newest state data show that 6% of the Iowa labor force lives with some form of disability.

Alex Watters, a quadriplegic and member of the city council in Sioux City, is also the alumni engagement director at Morningside University.

Watters said the benefit eligibility issue keeps some qualified people out of the workforce. He said he has had to limit the amount of work he can accept, which he said affects his upward mobility.

"I've had to turn down raises," said Watters. "I have had to deny paychecks through the city or different things, turn down speaking engagement - all because if I go over the income limit, I suddenly lose all of my benefits. And then I'm stuck. Then I'm forced to pay out of pocket, which results in tens of thousands of dollars per year."

The Americans with Disabilities Act guarantees equal opportunity for public accommodations,
commercial facilities, transportation and employment.




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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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