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.
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March is Developmental Disabilities Awareness Month, and this year's theme is "Beyond the Conversation". In Indiana, that could mean 'less talk and more action' to create job opportunities for adults with disabilities. The unemployment rate for people with disabilities is more than double the rate for those without a disability, and only 40% of people with disabilities are in the workforce, according to the Labor Department.
Hannah Carlock, senior director of public affairs with The Arc of Indiana, said they are as productive as any other group of workers.
"They want to be a part of the Indiana Hoosier workforce," Carlock said. "And so, we are working on that, because there are so many open jobs in Indiana, and we have people available to fill those jobs. And people with disabilities want to be a part of that solution."
Indiana has a Bureau of Developmental Disabilities Services, but it does not focus on employment or job training. The Arc is one organization that offers information about jobs and education, in addition to housing options. The group also advocates at the Statehouse for fair treatment in workplaces and schools, she said.
Developmental disabilities include autism spectrum disorders, speech or learning impairments and even hearing loss. They are often detected during routine doctor visits in the first few years of life. Carlock said some disabilities are more easily recognizable than others, and the people who live with these conditions are capable of endless possibilities - as long as their employers are willing to adapt.
"Autism, Down syndrome, cerebral palsy, that could be a learning disability. It might just take somebody more time to complete a task, because they move a little bit slower or read a little bit slower. Or they might have to take a break from something because they're overstimulated," she said.
The Centers for Disease Control and Prevention says about 12% of Indiana residents have cognitive challenges; another 11% live with either hearing or vision loss.
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To recognize Developmental Disabilities Awareness Month, state lawmakers have signed a resolution to raise awareness surrounding people with disabilities in Iowa. Advocates are calling for continued awareness and education about the issue.
This is the first time Iowa lawmakers have made an official designation for Developmental Disabilities Awareness month. Both the House and Senate passed a resolution yesterday.
Brooke Lovelace, Executive Director of the Iowa Developmental Disabilities Council, said disabilities can stretch across the population and often go unnoticed.
"A person with a developmental disability could be your co-worker," said Lovelace. "It could be a customer that you work with. It could be your neighbor, classmates, friends, obviously family members. It really can touch everybody's life."
Lovelace said the council is asking people with developmental disabilities to share art work and other success stories to raise awareness of the positive impact they are having statewide.
Beyond the legislative resolution raising awareness, Lovelace said it's important for people with disabilities to be heard, and for policy makers to seek their opinions when they are shaping legislation that may affect them.
"We're also talking about how important it is that people with disabilities have a seat at the table," said Lovelace, "and make sure policies that they may be recommending won't have a negative impact on people with disabilities and so that's part of the education that we are doing this month as well."
Someone has a developmental disability if they have been diagnosed prior to the age of 22 and includes people who have autism, cerebral palsy, a learning or intellectual disability, or a vision or hearing impairment, among other things.
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For Missourians with a disability, earning too much money, or having a spouse earn too much, can mean losing important Medicaid health coverage.
State Rep. Melanie Stinnett, R-Springfield, said she observed this problem when young people she had worked with as a speech therapist shared some of the struggles they faced after entering the workforce. Stinnett introduced House Bill 970 to increase how much both an individual and their spouse can earn before losing Medicaid benefits. She said Medicaid covers indispensable services, such as personal-care assistance.
"Individuals that come and help these individuals get up, get out of bed, get showered and dressed sometimes, so that they can get out and get to work," she said.
HB 970 would raise the amount a single Missourian with a disability can earn without losing benefits from roughly $41,000 to $88,000 per year, and married couples from $88,000 to $116,000. Although this may sound high, Stinnett said, the cost to pay for personal-care assistance out of pocket can be substantial, and many private insurance companies don't cover it.
An in-home health aide for just three hours a day in Missouri can cost more than $25,000 a year.
HB 970 also would remove the first $50,000 a spouse earns from consideration in the couple's total income. She said it's an important piece of the bill that could solve an unintended problem.
"We have inadvertently disincentivized marriage," she said, "in that individuals with disabilities are often choosing to either not get married, or sometimes even choosing to get divorced, so that they don't lose those necessary benefits."
Missourian Rachel Baskerville, who lives with a disability, said she feels lowering the impact a spouse's income has on one's eligibility is a matter of equalizing things.
"Non-disabled people don't have to look at certain restrictions with who they fall in love with and who they marry," she said, "and so I feel like, as a person with a disability, I shouldn't have to look under certain guidelines to see who I can fall in love with."
Stinnett also introduced House Bill 971 this session, which would require state agencies to submit annual reports showing steps they've taken to recruit, hire and advance individuals with disabilities.
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