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.

Although classes are back in session, all New York City public schools still aren't entirely disability accessible.

Reports find more than two thirds of schools across the five boroughs don't comply with the Americans with Disabilities Act.

The previous capital improvement plan invested $750 million for ADA school upgrades. But, this only made one third of schools accessible.

Molly Senack, education and employment community organizer with the Center for Independence of the Disabled New York, said this is unfortunate for students with disabilities.

"Those students are limited in the way they can choose what schools they want to attend," said Senack, "and it also means families and caregivers of students are limited in the way that they get to participate in their children's education."

Some groups want the city's Department of Education to allocate more than $1 billion for ADA compliance upgrades. Though this seems like a lot, it's making up for lost ground.

In 2015, the U.S. Attorney for the Southern District of New York reported the city failed to meet its ADA compliance requirements.

But Senack noted that the biggest challenge is staffing shortages throughout the Department of Education.

Beyond physical disabilities, New York City schools also face shortcomings in helping students with intellectual disabilities.

Reports show there aren't enough Special Education Certified teachers for students who need them. Senack said lacking professionals prevents some students from getting the education they need.

"For students with any disability," said Senack, "unfortunately, there is a pretty significant backlog in misrelated services where families have essentially filed complaints and requests for these missed services, and they are still waiting years later."

Lawsuits have been filed over the years to bring the city into compliance, though it's uncertain how effective those have been.

The most recent case relates to providing compensatory services for students who couldn't get regular school services during the pandemic.

Utah lags behind the national average of identifying children for autism.

In an effort to improve the state's standing, the Institute for Disability, Research, Policy and Practice at Utah State University will offer free, remote early identification of autism training for Utah service providers.

Janel Preston, special educator at the university, said when early identification is missed, children and families are not getting critical services to increase overall quality of life.

"It is really important for providers, as well as just the general public, to have a better understanding of what autism is," Preston urged. "And how we can help support and increase that awareness, acceptance."

Data from 2020 show 10 Utah children per 1,000 were identified to have autism by age 4. The national average is more than 20 per 1,000. Preston pointed out the Autism ECHO sessions will start on Sept. 25 and will aim to give educators, providers, case managers, administrators and families the tools they need to improve identification.

Preston acknowledged it is hard to pinpoint why Utah falls behind in the early identification of autism but suspects it could be due to lack of access. She added in comparison to other states, Utah is pretty rural, which can pose unique challenges.

"If you live along the Wasatch Front you have access to a lot of things," Preston explained. "But coming maybe from San Juan County, that is a long drive into the Wasatch Front, which requires families to take time off from work, if you have a child that is not able to make transitions very easily that can then cause a ripple effect."

Preston added children who go years without being diagnosed can struggle to navigate interactions with peers, manage school work and get a job later in life.

Preston hopes the program provides all kinds of Utahns the ability to foster connections and community.

"I could say, 'Hey, I have this kid or this family, this is what is going on, what are some things that I could do? What are some resources that I might not be aware of?'" Preston emphasized.


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A Nevada program is aiming to centralize transition services and improve outcomes for children with disabilities.

It will help create a centralized hub for children and young adults to explore career and postsecondary opportunities. The initiative will also offer professional development to service providers in an effort to enhance and increase the availability of resources.

Jennifer Kane is the project director of The Nevada Transitions Roadmap through Innovative Partnerships. She explained last year the state's Department of Education secured a $10 million grant from the federal government, which will be used over the next five years.

"There isn't really a system that takes us from age 10 to age 24 by itself," Kane pointed out. "If they're trying to get us to a truly seamless transition, they gave us an age range which we have to work together to get there."

Kane noted the program will be approaching the end of its first year later this month. She added just last week, it had its first Nevada TRIP Advisory Work Group meeting to bring together stakeholders, including significant participation from children and youths with disabilities and members of their support systems.

Ashley Price, co-project director for the Nevada Department of Education, said one of the main goals of Nevada TRIP is to cultivate strong partnerships with agencies and break down the state's current siloed systems presenting significant challenges to families.

"One very unique thing about Nevada is how rural Nevada is," Price emphasized. "So of course we get a lot of concentration in Washoe County and Clark County, and the rest of the state struggles. They might not have certain age ranges of students and young adults who have needs and then all of a sudden they do."

Price added many people across Nevada simply do not know what resources and support are available.

"Even as we are diving through this, trying to map out different agencies and different resources we're learning new things that we had no idea and that we are going to go ahead and include," Price explained. "That's probably the biggest misconception, is that people don't know that there is help or don't think there is help where they are."

On the flip side, Price stressed many agencies are ready to help but cannot find the necessary recipients, which is precisely one of the areas Nevada TRIP aims to help bridge.


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