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 Brandon Tilus, president of its board of directors, said he feels public perception is being outdated by the lives many with Down syndrome are carving out for themselves.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.
get more stories like this via email
As siblings in foster care, the fear of being separated is daunting. But thanks to a loving family in Jacksonville, Fla., for two brothers in Ohio, that bond remains unbroken.
Despite Dalton's cerebral palsy and numerous medical challenges, brother Dawson became his devoted caregiver. The two were adopted by Robbin and Steven Brydges through the nonprofit "Wendy's Wonderful Kids," and they've become a beacon for disability awareness.
Now, at 15, Dawson said he's grateful for his parents' support in keeping them together through it all, as he continues to care for his brother.
"He is the most amazing brother a man could ask for," he said. "He has an incredible smile that will just brighten your day instantly. And I'm just blessed to have him in my life, that's all I can say. I'm just blessed."
March is National Disability Awareness Month, and Dawson encouraged anyone considering the adoption process to consider all kids - especially those with challenges who are often overlooked, along with older kids - when it comes to finding their forever home.
Rita Soronen, president and CEO of the Dave Thomas Foundation for Adoption, said children with disabilities or special needs - regardless of race, age, or background - often face prolonged stays in foster care or institutional settings. She underscored the need to establish a support network for families considering adoption, and said the Wendy's Wonderful Kids Program was created to assist families in navigating this journey, no matter a child's unique needs.
"Making those connections of access to networks - access to medical or psychological resources that they will need before that adoption is finalized - is critical," she said, "so that families feel that they will be supported, that they will have access, and that they can successfully raise a child in their home."
According to the Dave Thomas Foundation, its Wendy's Wonderful Kids Program is responsible for more than 14,000 successful adoptions across the United States and Canada.
Disclosure: Dave Thomas Foundation for Adoption contributes to our fund for reporting on Children's Issues, LGBTQIA Issues, Philanthropy, Social Justice. If you would like to help support news in the public interest,
click here.
get more stories like this via email
Iowa lawmakers are being asked to make changes to the income laws for people with disabilities.
Disabilities advocates are hold an event at the Statehouse tomorrow in support of House File 2589.
Also known as the "Work Without Worry" bill, it would raise the income limit and eliminate the asset ceiling for people with disabilities - allowing them to remain eligible for federal benefits.
Thirty-four-year-old Ben Grauer is quadriplegic and works at the University of Iowa. He said the measure would open the door to more employment for the 12,000 Iowans with disabilities who rely on Medicaid benefits.
"Yeah, it's hugely important," said Grauer. "Iowans with disabilities, myself included, want to work and are capable of working and contributing to society, and growing Iowa's economic base and contributing to the tax base."
Grauer said the current $51,000 income limit for a family discourages work for people with disabilities, who want jobs but need to retain their benefits as well.
Disabilities advocates are holding an all day event at the Capitol tomorrow, encouraging people who back the measure to talk to legislators and show their support.
HF 2589 would decouple the family and individual income limits, meaning an individual's income could be counted separately and not factor into the family total.
It would also remove the current $13,000 asset limit for a family to qualify for benefits.
Grauer said that would allow families to make better financial plans.
"That's certainly not very high," said Grauer. "And if we're thinking about wanting to save for your future or save for a vehicle or save for a house - which requires a large downpayment - a couple certainly can't make that downpayment based on an allowable asset limit of $13,000."
The bill would increase the allowable individual asset limit and boost the family limit to 450% of the Federal Poverty Level. HF 2589 awaits action in the Appropriations Committee.
get more stories like this via email
New York disability rights advocates are working to break barriers in numerous legislative areas, including those in transportation, housing, and employment. Another area of focus is voting and accessible polling places. A Brennan Center for Justice report finds almost all of New York's polling places aren't disability accessible - leaving them unable to accommodate a quarter of the state's population.
Sharon McLennon-Wier, executive director with the Center for Independence of the Disabled New York, said this can be improved.
"We're looking at accessible ballots, especially electronic ballots
for those who are blind, visually impaired, learning disabled. If they're able to submit an accessible ballot through absentee ballots that would be helpful because maybe they're unable to get someone to get them to the polls," she said.
She added the State Election Board should also train poll workers on using ballot marking devices. The Brennan Center's report finds in 42% of polling places surveyed, ballot marking devices weren't set up to ensure a disabled voter's privacy. Bills about training poll workers and enabling electronic absentee ballots are pending in the Assembly's Elections Committee.
In education, McLennon-Wier said proper sexual education for people with disabilities is important. Certain disabilities might require a person to have help with daily life, but she noted this can leave a person in more vulnerable situations. Providing this kind of education could help reduce the amount of sexual assault people with disabilities face.
"So, we want people with disabilities to be taught about their bodies, taught about inappropriate touching, taught about how to get good reproductive healthcare, how to understand hygiene, good health, regarding the reproductive process," she continued.
The U.S. Bureau of Justice Statistics finds sexual assaults of disabled people rose 27% between 2017 and 2019. Moreover, a 2023 survey notes 48% of women with disabilities have experienced sexual assault or harassment in the workplace.
Disclosure: Center for Independence of the Disabled New York contributes to our fund for reporting on Disabilities. If you would like to help support news in the public interest,
click here.
get more stories like this via email