NEW YORK - A new long-term medical study finally will bring the needs of often-overlooked populations into focus.

The "All of Us" research program, expected to last at least 10 years, is designed to help researchers develop precision medical care based on the real-life needs of individual patients. While many large-scale studies tend to look only at select groups, this study hopes to involve 1 million people from the entire spectrum of society.

Elizabeth Cohn, community engagement lead for the New York City Precision Medicine Consortium, said the study of relatively rare conditions can have benefits for health care in general, so broad participation of people with disabilities in this study will have two major impacts.

"There's the immediate benefit of being included in research," she said, "which can be very empowering and also assist in meeting people's needs - and then, the greater vision of better health for our nation."

People who want to participate in the study can register online at joinallofus.org/together.

Jess Powers, director of communications and education for the Center for Independence of the Disabled, New York, said participants will be asked to answer questions about their health, family, home and work, and they'll have options to provide electronic health records and biological samples.

"Depending on how much information people want to share; it's up to them," she said. "The idea is that this data will be anonymized and then available to researchers to make advances in medicine."

The researchers hope people will want to be involved over time in the study, but anyone is free to opt out at any time without penalty.

Speaking not only as a health researcher but also as the mother of a child with special needs, Cohn added that this sort of comprehensive, long-term study is long overdue.

"This is an opportunity for all voices to be heard, for all concerns to be heard," she said. "We feel strongly that the time has come for medicine to be inclusive, as other things are inclusive."

The All of Us study is a project of the National Institutes of Health.

More information is online at allofus.nih.gov.

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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Thirteen students, ranging in age from 14 to 21, have just graduated from the Iowa Developmental Disabilities Council Youth Leadership Academy.

The program's goal is to develop young leaders who learn skills that build their confidence.

A dozen students from Iowa welcomed one from Illinois who is attending school in Iowa. Together, they learned during the weeklong academy how to be more effective advocates for their communities.

That's exactly what 21-year-old Andrew Allen, who has been diagnosed with ADHD, autism and severe separation anxiety, was looking for when he applied.

"I got bullied a lot," said Allen. "When I was in school, I got pushed aside a lot and I thought, 'Enough is enough.' They taught me how to communicate, have conversation with special needs, and help our community."

The annual academy teaches students ways to advocate for themselves, become more civically engaged and to be of service in their communities.

19-year-old University of Iowa student Jackie Corless, who said she has an intellectual learning
disability, also took part in the Youth Leadership Academy.

She said the topics ranged from advocacy to communicating, and lots of useful skills in between.

"Leadership skills," said Corless. "I learned about networking, setting goals - you know, the difference between how to be an advocate and how to better strengthen your advocate goal. How networking really works within the disability world."

The Youth Leadership Academy is a partnership between the Iowa Developmental Disabilities Council, Disability Rights Iowa, ASK Resource Center, the University of Iowa Center for Excellence in Developmental Disabilities, and Access to Independence.



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