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.

North Dakota is above the national average in seeing individuals with disabilities as part of the workforce but the people tracking the numbers said even more people could be part of the steady job growth.

During National Disability Employment Awareness Month, assistance groups and agencies remind businesses and hiring managers workers with disabilities are a hidden talent pool.

Malinda Krahgh, employment specialist for the North Dakota Center for Persons with Disabilities at Minot State University, said "mom and pop" style businesses are often more open to providing job opportunities than larger corporations and there are more barriers.

"We do find that it's a little more difficult to connect with those bigger companies, to encourage them to hire individuals with disabilities," Krahgh pointed out.

She noted it makes it harder for workers with disabilities to earn more money and improve their quality of life. Traditionally, the national disability unemployment rate is higher than in the general population. However, gains were seen after the pandemic. In North Dakota, the employment rate for working-age people with disabilities is nearly 20 percentage points better than the national average.

Krahgh emphasized workers with disabilities bring a variety of skills to the table and should not be limited to food service and similar jobs. She encouraged larger employers with more diverse openings to gather input from provider agencies and customize platforms for jobseekers.

"I do notice that through online job applications, that it's not quite as easy to get those skills and information out there," Krahgh added.

Her team recommended using video resumes, where a person with disabilities can better describe their unique skills. Advocates said with remote work still a major force, employers can use the tool in hiring more people with disabilities.


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Connecticut disability rights advocates are concerned about state and federal barriers to employment.

At the state level, Medicaid is the only health care plan covering necessary care some people with disabilities might need. Beyond that, they could face high out-of-pocket costs.

Jonathan Sigworth, president and CEO of the nonprofit More Than Walking, feels states can reform their Medicaid buy-in programs. Connecticut's buy-in program has a $10,000 asset limit, which he said restricts a disabled person's ability to work.

"The system is currently set up so that if you have the health care you need, the policies prevent you from working," Sigworth pointed out. "You'd have to choose between the two, essentially, in some cases. Those policies are really detrimental."

Having a job could force someone over what advocates call the "benefits cliff," when a person gets a raise, has a kid with a part-time job, or some other income increase, which then makes them ineligible for certain benefits. Connecticut's General Assembly considered several bills during its last session to alter programs with benefits cliffs, though none were passed.

Beyond state policies, the upcoming election is also concerning for Sigworth. He's troubled by Project 2025, a policy outline for former President Donald Trump's possible second term. It calls for removing the Equal Employment Opportunity Commission's consent decree power in instances of employment discrimination.

Sigworth noted it would terminate a key way for people with disabilities to fight workplace discrimination.

"There's one party, one argument in this country that talks about cutting regulations and in the same breath saying we should protect people with disabilities," Sigworth contended. "It's using the disabled community as a token audience."

Though Trump disavowed Project 2025, some disability rights advocates remain uncertain since he repeatedly tried to repeal the Affordable Care Act. Project 2025 also calls for federal spending cuts to programs like the Equity in IDEA program, which encompasses all policies ensuring fair treatment and access for students with disabilities.


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New York disability rights advocates are voicing concerns about changes to what's known as the Consumer Directed Personal Assistance Program.

On October 1, New York State will contract with a single provider for the program.

CDPAP provides services for people who are chronically ill or have physical limitations and who need help with daily life. Gov. Kathy Hochul says the reason for the change is to cut high Medicaid costs.

But Sharon McLennon-Wier, Ph.D - executive director of the Center for Independence of the Disabled New York - predicted the move will have resounding impacts.

"Anyone with a disability that has this program could lose their home healthcare assistance - either from maybe neighbors or friends, or even family members," said McLennon-Wier, "and we already know that there's a home health-aide shortage all over the country."

Gov. Hochul noted the program has been subject to mismanagement, but critics say she didn't consult its leaders.

Several agencies supporting the idea of keeping CDPAP local have been cited by the New York State Comptroller for wage theft. But the provider set to take it over isn't much better.

Public Partnerships LLC had contracts terminated in five other states, and was subject to class-action lawsuits over home-care workers' pay in Pennsylvania.

Feedback from New Yorkers with disabilities has mostly been questions about CDPAP's future.

McLennon-Wier said she is among those waiting to see what happens next - as she said they've received little guidance from the governor's office.

She added that it can be frightening to possibly lose much-needed care.

"I think anyone who has to depend on someone for that day-to-day care," said McLennon-Wier, "to have to worry - especially if they live alone - is really something that, mentally, that a person in this situation shouldn't have to deal with."

A bill has been introduced in the New York State Legislature to curb these changes. If it passes, it would require any CDPAP provider to be licensed by the State Department of Health starting in 2026.

Currently, providers can operate without formal licensure.