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.

October is National Bullying Prevention Month, and one Nevada father is speaking out after his special-needs son endured a traumatic incident.

Jeremy Anderson, a board member with the Down Syndrome Organization of Southern Nevada, said a year ago, his 17-year-old son was one of two male students with Down syndrome who were "corralled into a bathroom stall" by six peers and encouraged to kiss. The encounter was recorded and later shared on social media. Anderson said these events leave significant and lasting impacts. According to Stopbullying.gov, children with disabilities are at an increased risk of being bullied because certain factors leave them more vulnerable. Anderson later said his son told him he participated in the act because he wanted to feel a sense of acceptance and belonging.

"He did it because he wanted to hear them laugh, and I think that is the saddest part," Anderson said. "My son did this because he thought these kids would think that he was doing something for them at his own expense."

The event has been difficult for his son and family to grapple with, the elder Anderson said. He is calling for people to treat those with disabilities with more kindness, and added the kids who bullied his son "got a slap on the wrist." He said not only does more need to be done to hold bullies responsible, but the institutions where these incidents are happening should also be held to account.

Peter Whittingham, board chair of the Down Syndrome Organization of Southern Nevada, said bullying has undergone what he calls a transformation. It is no longer just physical, he said, but also involves deeper emotional and psychological impacts, in part because of social media.

Whittingham says many who are part of the school-age population, in his words "exploit the lack of comprehension and inability to make coherent decisions" of those with disabilities. While the state of Nevada does have anti-bullying laws on the books, Whittingham and others are calling on policy makers to find better solutions to mitigate events like this from happening.

"It is time for legislation to be enacted that provides for significant consequences, not just adding in stricter sanctions, but penal consequences for individuals who bully persons from the disability community to the extent that it creates significant emotional trauma."

Whittingham added as a parallel example, there are current laws that take into account the inability for infants and children to make decisions and say "no." He argues a similar approach needs to be taken to protect those with disabilities. If you witness bullying, you can report the incident to a school administrator or at SafeVoiceNV.org, or call the 24-hour hotline at 1-800-216-7233.

In Michigan and across the country, nearly 25% of the population encounters challenges in voting and accessing the polls.

The Carter Center and Detroit Disability Power audited 261 polling locations in metro Detroit last election, and found just 16% of them fully accessible.

Dessa Cosma, executive director of the group Detroit Disability Power, said many polling locations do not have accessible parking, a ramp, clear signage, accessible doors or a direct travel path even just to enter the building. Once inside there are further challenges.

"No wheelchair-height voting booth or no functional voter access terminal which is the accessible voting machine that is required by law to be available and usable at all poling locations in the country," Cosma pointed out.

Cosma noted people with disabilities need to be able to engage in democracy. One of the first steps to being able to help them participate is to make sure they can get to a polling place and vote.

Accessibility challenges lead to stories about voters going to the polls and having to turn back because either they could not get in or could not access a ballot. Groups advocating for accessible voting want to spread awareness about how detrimental lack of access is to communities.

Cosma acknowledged the policies are clear voting locations meet the needs of all voters, but enforcing those rules is equally important.

"That is where clerks and other election officials really come in because it's their responsibility to make sure that all the polling locations are meeting the requirements of the law," Cosma asserted. "We're here to help them implement the best practices for making sure their polling locations are accessible and that many of the things that they need to do are not that hard and are certainly not that expensive."

Cosma added simple changes like clearly marked accessible parking, ensuring the accessible door to the building is unlocked even if it's not the primary entrance, making sure every precinct has a wheelchair height voting booth, and all accessible voting machines are maintained, plugged in and turned on.


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A recent report finds only around 31% of New York City public schools are disability accessible.

The report, from Advocates for Children of New York, finds districts with a majority of schools not compliant with the Americans with Disabilities Act are in Brooklyn, Queens and The Bronx.

Sarah Part - senior policy analyst with Advocates for Children of New York - said the group is looking for the DOE to invest $1.25 Billion in accessibility upgrades during their next capital plan.

But, she noted that the money will only go so far.

"So, it'll take some of those buildings to full accessibility or to a much higher level of partial accessibility," said Part. "They might not be perfect, as far as ADA compliance, but there'll be a legitimate educational option for a student who has a typical disability or a teacher or a staff member who uses a wheelchair and wants to work there."

In the 2020-2024 capital plan, the city dedicated $750 million for these upgrades. Once that funding ends in 2024, more than one-third of schools will be fully accessible - with only one district having half of all schools accessible.

This proposed funding will help bring an estimated 150 to 200 buildings into complete accessibility by 2029.

While this might be somewhat expensive, Part said this money will make up for the lack of investment taken after the passage of the ADA. She describes other challenges which could come up.

"I know with widespread inflation and construction costs have been rising," said Part. "That makes it more difficult for the school construction authorities to do such projects. Some buildings are quite old, and it's also just like the city's school system is so massive and sprawling, the scale of the problem is just really huge."

Part said she is glad about the progress that's been made already, noting there's still a lot of work that needs to be done.

She said she hopes to see all these school upgrades done in time for the 40th anniversary of the ADA in 2030.




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