FARGO, N.D. - People with Down syndrome are having a bigger impact on society, and their advocates in the Dakota region say it's time for the public to take notice.

October is Down Syndrome Awareness Month. It's widely known that people born with this condition have an extra chromosome that affects their development, but some say there's more to it.

The New Directions Down Syndrome Association connects parents in a four-state region, including parts of North Dakota. Brandon Tilus, president of its board of directors, said he feels public perception is being outdated by the lives many with Down syndrome are carving out for themselves.

"People with Down syndrome born today have a really good chance of living a life where they're independent, that they get married, that they do all of these things that we expect all individuals to do," he said.

He credited early-intervention programs and advancements in therapy for establishing better outcomes. However, he said strong government funding still is needed to ensure more families have access to these services. According to the Centers for Disease Control and Prevention, Down syndrome occurs in about one in every 700 births.

Tilus said another way to overcome any stigma is for people to make others with Down syndrome feel more at ease in their interactions. He also advises that some ways of communicating should be avoided.

"'I use my hands more to talk to them, because I'm not sure they're going to understand me.' And, those types of things - sort of, coming into an interaction with those individuals with those preconceived notions - I think can make it a little bit more difficult," he said.

Tilus, whose 6-year-old daughter was born with the condition, said the best thing to do is treat a person with Down syndrome like anybody else. All they may need is a little extra time to respond, and be given the opportunity to take the lead in a conversation, to feel comfortable.

A Wisconsin nonprofit serving people with disabilities is waiting to hear if federal changes to Medicaid will affect their clients and caregivers, who overwhelmingly rely on the program for their health care needs.

The nonprofit CP serves about 200 people in Northeast Wisconsin that have complex physical or developmental disabilities, nearly all of whom use Medicaid to pay for their services.

Julie Tetzlaff, director of adult day services for CP, said about 75% of clients are in wheelchairs and unable to reposition themselves. She explained the exercise program CP offers is crucial to prevent patients from developing pressure sores.

"A sore on the butt costs a lot of money, anywhere from $30,000 to $150,000," Tetzlaff explained. "Once one of our clients has a pressure sore, it stays with them for a long time. So it might heal up, but they're going to be susceptible to another sore in that same area without active movement and repositioning."

She noted their program focuses on functional skills training using adaptable equipment funded through grants and community support.

Tetzlaff pointed out most of their clients are deemed to have a level of disability which could place them in a nursing home and most are poor. About half live with their parents, who she acknowledged can easily experience burn out. She added day services provide respite for these caregivers and prevent costly nursing home placements for clients.

"Looking ahead, if you have all these parent caregivers who, some of them, are on Medicaid because they're caring for somebody that's on Medicaid and they need health insurance themselves," Tetzlaff observed. "If they become more ill as well, and aren't able to care for their person, and they need long-term care - it doesn't seem like legislators have thought of that. The people that are caring for all these people, that's a big group."

Starting in December 2026, most Medicaid recipients will be required to complete at least 80 hours per month of work, schooling or community service to retain coverage. There are exceptions but it is unclear if they will apply to people caring for an adult with a disability.

Jon Syndergaard, executive director of CP, said lawmakers have assured them their clients will not be affected.

"But then in the next breath, they're all telling us that they can't necessarily be certain about that because they don't know the details," Syndergaard emphasized. "In many cases, it's sobering to say that they haven't even worked their way through all of the legislation in its entirety yet."

Experts have said it is nearly impossible to carve out people with disabilities or their caregivers because cuts to Medicaid will affect everyone. With all the uncertainty, Syndergaard underscored the nonprofit and the families it serves have grown cynical about the future of health care coverage.


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Nevadans with disabilities are concerned with proposed federal cuts to Medicaid, despite claims from GOP lawmakers that the cuts target only waste, fraud and abuse.

The U.S. Senate is currently considering a federal budget reconciliation package containing cuts to Medicaid and other social safety nets. The bill narrowly passed the House last month, with the latest version proposing cuts to Medicaid worth more than $700 million.

Ace Patrick, a Nevadan living with a disability, said other proposed changes in the bill, such as implementing work requirements to qualify for Medicaid, would be particularly challenging for those with disabilities.

"Those of us that could work, are working," Patrick said. "Those of us that cannot work, and there are many people on disabilities who are unable to work, who are in their homes, in apartments, in group homes, in nursing care facilities - what are they supposed to do without care? It will be devastating and many of us will die."

Republican lawmakers have said work requirements may help boost employment. The majority of Medicaid recipients already work, even if it's for informal jobs that don't produce pay stubs. Health-care advocates argue low-income Americans are already struggling to put food on the table and cover their housing costs, and clearing a work requirement would be yet another hoop to jump through.

About 740,000 Nevadans are enrolled in Nevada Medicaid, according to KFF, a nonprofit specialized in health policy research. The state program covers about 35% of working-age adults living with a disability in the Silver State.

Patrick said politicians in the nation's capital aren't thinking about the consequences of the cuts.

"I don't know what they think we're all going to do," Patrick said. "It's going to overload the ER, if they're even able to manage without getting that kind of income."

Advocates have warned that significant cuts to Medicaid could increase the number of unprofitable hospitals, especially in rural parts of the state, which can then put them at greater risk of financial distress or even closing their doors.

Indiana University now trains police academy recruits in Deaf culture awareness and basic American Sign Language.

The program aims to improve communication between future officers and the Deaf community across campuses statewide.

Brennan Cox, a law student and part-time officer for the Indiana University Police Department, helped launch the course after noticing a gap in police training on interacting with Deaf individuals.

"This training is beneficial for the Deaf community because it creates safer interactions with officers and members of the Deaf community, creates more engagement with the Deaf community," Cox explained. "Really, we just want the Deaf community to know that we want to learn and that officers have a desire to learn about the Deaf community."

The nearly three-hour course features Deaf faculty who teach recruits key signs like "police," "help," and "stop," while emphasizing patience and alternative communication methods.

Cox noted the training also benefits officers themselves.

"What made me want to bring this training to IU Police Academy is I took ASL when I was in my undergraduate at IU for two years," Cox recounted. "It made me really just become passionate about how law enforcement interacts with members of the Deaf community and how we can better serve them."

The program now includes recruits from Indiana University campuses in Bloomington, Indianapolis, and South Bend and plans to expand to other agencies.


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