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.

By Marianne Dhenin for Yes! Magazine.
Broadcast version by Shanteya Hudson for Georgia News Connection reporting for the YES! Media/Public News Service Collaboration

When then-Atlanta mayor Keisha Lance Bottoms announced in April 2021 that a new law enforcement training complex would be built in the Weelaunee Forest, or South River Forest, in Dekalb County, near Atlanta, Georgia, a diverse coalition of organizers, activists, and other community members formed to oppose the project under the "Stop Cop City" banner. For Atlanta-based disability justice activists who are part of the coalition, the movement to stop Cop City is a disability justice issue.

"It is critical for us to bring a disability perspective when we talk about Cop City," says Atlanta-based Dom Kelly, co-founder of the nonprofit New Disabled South (NDS), "because the construction of this facility will disproportionately harm disabled people."

Almost three years after Bottoms' announcement, Cop City, officially titled the Atlanta Public Safety Training Center, is under construction on an 85-acre plot of forested land owned by the City of Atlanta in DeKalb County. If completed, the campus will be the nation's largest police training complex, equipped with military-grade facilities and a mock city for urban police training.

Many who have mobilized against the project have highlighted the adverse environmental effects of clearing dozens of acres of the South River Forest to make way for the development. Indigenous-led groups also oppose the destruction of the Weelaunee Forest and its wildlife habitat.

Meanwhile, racial justice groups foreground the fact that police violence disproportionately harms communities of color, and abolitionist organizations reject any expansion of policing and incarceration. They argue that Cop City would further militarize the police force. "Police here have already responded to protests with militarized tactics, chemical weapons, and domestic terrorism charges," Atlanta organizer Micah Herskind told The New York Times last year. "Cop City would only further provide police with training and equipment to suppress dissent and terrorize Black and working-class communities."

According to disabled organizers, each of these issues affects their community in unique ways. The framework of disability justice helps reveal these intersections.

"Destroying any portion of that forest is going to have an impact on our ability to fight climate change, and then that will disproportionately impact the disabled community," says Kelly. Disabled folks are at greater risk of being negatively affected by climate change, including experiencing worsening health conditions due to changing weather or being left behind during climate-change-related disasters.

Many disabled people also live on fixed incomes, making it nearly impossible for them to afford equipment to help navigate the effects of climate change, like air conditioners to survive a heatwave or backup generators to get through a blackout.

Disabled people are also especially vulnerable to police violence and are overrepresented in the nation's incarcerated population. "Disabled people, especially disabled people of color, are disproportionately harmed by police and the carceral system," says Kelly.

NDS, which works across the southern United States, partnered with Data for Progress on a recent voter survey in six Southern states including Georgia, examining sentiments on law enforcement encounters for disabled people in the region. The survey respondents agreed that disabled people experience discrimination during law enforcement encounters due to their disabilities.

Among Black and disabled respondents, rates of agreement were higher than among White and non-disabled respondents, pointing to the important difference between lived experience and outside perception of law enforcement encounters. Over 50 percent of Black survey respondents said they believe disabled people experience discrimination when interacting with law enforcement. About 34 percent of White respondents agreed that disabled people face discrimination in these encounters. More than 46 percent of all disabled respondents and about 37 percent of all non-disabled respondents agreed that disabled people experience discrimination when interacting with law enforcement.

Further, according to data from the Survey of Prison Inmates, 66% of people incarcerated in the U.S. report having a disability. Studies have also found that as many as half of those killed by police nationwide are disabled.

Black people are already three times more likely than white people to be killed during a police encounter-disabled or not. Additionally, they are more likely to be disabled and less likely to have access to needed health care.

Often, police encounters with disabled people become violent because officers make assumptions about so-called normal behavior. If an individual does not speak, move, or behave as an officer expects or demands, rather than considering that they might be disabled, the officer may assume noncompliance and react with force.

"A lot of the Black men that Atlanta police or [those from] other police departments in the metro area have killed were disabled," says Susi Durán, chair of the Atlanta chapter of the National Lawyers Guild, another group actively organizing against Cop City.

In 2015, police in Chamblee, Georgia, just northeast of Atlanta, shot and killed Anthony Hill, a Black man with bipolar disorder who was experiencing a mental health crisis. In 2021, in a similar incident, a DeKalb County officer killed Matthew Zadok Williams. His family later told reporters he was having a mental health crisis, and they wished the police would have gotten him help.

Experts suggest that a training facility such as Cop City would worsen the criminalization of disabled people rather than lessen the issue. Studies show that training programs, even those intended to reduce implicit biases against marginalized groups, do not improve police interactions with those communities. Research also shows that the increasing militarization of the police disproportionately threatens minority groups.

Kiana Jackson, Research and Coalition Organizing Manager at NDS and a co-author of the recent NDS and Data for Progress survey, says people have been connecting the dots between the discrimination they've seen in their communities and police militarization. "It is important for disabled people to get out on the forefront of these issues and say, 'Hey, we are victims of this. We are the ones being killed,'" she says.

Many disabled folks in Atlanta and DeKalb County have been doing just that as an outspoken contingent of the Stop Cop City movement. When the Atlanta City Council scheduled a vote on an ordinance for funding Cop City at a council meeting in June 2023, hundreds of community members showed up to make their voices heard at a public comment session that lasted 14 hours.

"Disabled people are a part of the Atlanta community," said Barry Lee, an Atlanta-based disabled artist who spoke at the meeting. Lee then urged the council to "allocate the proposed funds toward creating better accessibility for the city of Atlanta."

The city consistently ranks low for quality of life for its disabled residents, partly because of its crumbling sidewalks, inaccessible transportation, and lack of health care facilities. "There are parts of the city where it is difficult to walk on some sidewalks," says Durán. "Plus, we lost our Level I trauma center when Atlanta Medical Center closed down [in 2022]."

When Georgia-based respondents to the recent NDS and Data for Progress survey were asked whether their state had adequate resources, such as medical or mental health resources for disabled people when interacting with law enforcement, only 31 percent said they thought so.

People are frustrated, Durán says, because rather than the Atlanta City Council allocating funding for repairing infrastructure or shoring up the city's health care, "They're spending it on policing." Slogans like "Defund the Police" and "Care, Not Cops," heard at Stop Copy City protests capture this sentiment. Like Lee, many others who spoke at the public comment session also called on the City of Atlanta to allocate funding to infrastructure, housing, or youth programs rather than policing.

Despite the mass opposition at its meeting last June, the Atlanta City Council voted to approve $31 million in funding for the construction of Cop City.

When the Stop Cop City movement launched its next front, disabled organizers were again at the fore. The "Vote to Stop Cop City" referendum campaign began soon after that council meeting, aiming to get a vote on Cop City's construction on an upcoming ballot. One of its two fiscal sponsors was New Disabled South Rising (NDRS), NDS's political arm.

Kelly says backing the referendum campaign "aligned with the work [NDS was] already doing" as part of the organization's mission to support efforts decriminalizing disability and ensuring disabled people have access to the democratic process.

As fiscal sponsor on the campaign, NDS worked behind the scenes processing and disbursing contributions. Kelly says the organization also helped ensure that communications and canvassing were inclusive of disabled Atlantans.

Between its launch in June and September 11, 2023, the referendum campaign collected and submitted 116,000 signatures from Atlanta residents. That number is well over the threshold needed to get Cop City on the ballot. But the City of Atlanta has questioned it and made a series of attempts to disrupt the validation process, which Stop Cop City organizers claim are stalling tactics undermining Atlantans' right to vote on the issue.

As the referendum petitions move through a contested verification process and direct action to stop Cop City's construction continues, disabled organizers say they're committed to continuing their work. "If we want to see collective liberation in our lifetimes, we have to fight back against the further militarization of police and destruction of our already precious forest environment to ensure that future generations have a planet to live on and won't be murdered by police," says Kelly. "Cop City is one piece of that struggle."


Marianne Dhenin wrote this article for YES! Magazine.


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As the country observes Autism Acceptance Month, Nebraska families raising a child with Autism Spectrum Disorder are among those learning they will be receiving financial assistance.

The Family Support Waiver is based on passage of a 2022 bill and will provide up to $10,000 annually for 850 Nebraska families with a child with a developmental or intellectual disability, and the child will also receive Medicaid coverage.

Leslie Bishop Hartung, president and CEO of the Autism Center of Nebraska, said many Nebraska families raising children with a variety of developmental disabilities struggle to afford their child's care needs.

"It's not a lot of money but it might be just enough for families to bridge those gaps when they really need support, especially over the summer break when there's no school for children," Bishop Hartung pointed out. "And also, specific services that might be a real financial burden."

Families can use the waiver funds for services such as respite care, family caregiver training, home modifications and assistive technologies. Depending on the child's limitations and level of support needed, families can face considerable costs meeting the needs of a child with a developmental or intellectual disability.

Jennifer Clark, deputy director of the Developmental Disability Division for the Nebraska Department of Health and Human Services, said they are notifying around 150 families per month between now and August they will be receiving the Family Support Waiver. The notices are prioritized according to the family's need. Clark says this was determined by their responses to a survey DHHS sent to families with a child on the developmental disabilities waiting list.

Receiving first priority are families in crisis.

"Where the child tends to self-harm or harm others, so whether they're harming their siblings or their family members," Clark outlined. "The second priority is children with disabilities who are at risk for placement in juvenile detention centers or other out-of-home placements."

Clark added families in which the grandparent is the primary caregiver are given third priority, followed by families with more than one child with a disability living at home. Remaining families are prioritized based on the date they applied to the developmental disabilities waiting list.

Jordan Squiers, board president of The Arc of Buffalo County, said they are hopeful the waiver will help fill gaps in services, especially for older youths who do not become eligible for more inclusive services until they turn 21.

"They might be able to get additional help in their home; they might be able to hire somebody to take somebody out into the community more often," Squiers explained. "Kids that age do get the benefit of the schools but obviously we know there's lots of hours in the day outside of that; weekends, summers."

The Family Support Waiver is one of three Home and Community-Based Services Medicaid Waivers available in Nebraska.

April is Autism Acceptance Month and as rates grow, support organizations in South Dakota hope more children on the spectrum get the tools they need to succeed in school.

Researchers with the Annie E Casey Foundation say nearly 9% of South Dakota students receive special education services due to an autism diagnosis, which is four percentage points higher than a decade ago.

Carla Miller, executive director of South Dakota Parent Connection, which works with families of children with disabilities, encouraged parents of children with autism to be proactive with school officials and follow up as needed. For school districts, she stressed clear communication is vital.

"We need to be careful we're not using a lot of jargon that's our related to our field, and really make sure that we ask parents, are they understanding the information we're giving?" Miller urged.

Miller also advised classroom leaders should allow students with autism to participate in as many general class activities as possible while acknowledging their needs. With staffing shortages still a concern, she called on districts to provide more training, especially for general educators.

Miller emphasized special educators cannot foster a welcoming environment on their own and in an era of more awareness, Miller hopes school districts look at students on the spectrum as individuals who bring unique qualities to their class.

"How is autism showing up in the life of that child, and how is it impacting that child?" Miller asked. "Trying to stay away from stereotypical descriptions of autism that can put kids in a box. "

Autism presents a broad range of conditions highlighted by challenges with social skills, repetitive behaviors, and communication. Advocates stressed symptoms can vary widely and the disorder looks different for everyone on the spectrum.


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