MISSOULA, Mont. -- A doctor's office can be an intimidating place for children. A new guide from Montana can help kids of any ability advocate for themselves in medical settings.

"Skills and Strategies for Health Care Decision-Making" can help parents set their children up to navigate the doctor's visit.

Jenn Banna, coordinator of the Montana Family to Family Health Information Center, wanted to develop the guide because she has five kids of her own, one of whom has a rare neurological disorder. She said it can be difficult for families and even medical providers to get children with disabilities involved in medical decisions.

"When individuals can make decisions and participate in their own care, they feel ownership over what's happening, and they feel like they're part of what's happening," Banna contended.

Banna noted when children can answer questions such as how old they are and what their name is, it translates into other parts of their lives. She added other family-led organizations have reached out to say they are excited to use this guide in their states as well.

Sara Graceffo, genetic counselor for Utah Regional Leadership Education in Neurodevelopmental Disabilities, which developed the guide, said users of the resources are navigated by their children's developmental stage rather than age.

There are four stages listed, including choice-maker, question-answerer, decision-participant and decision-maker.

"We broke it down into the different stages," Graceffo explained. "Each stage has a page that has different sections for preparing for the appointment, at the appointment and after the appointment."

Graceffo pointed out the guide also has recommendations such as books and apps that can help with the process.

Banna emphasized part of the reason she wanted to develop this guide is she believes waiting until a child is in their teens to empower them to make decisions in a medical setting is too late.

"I felt like we could add some skills earlier on to prepare families earlier for that transition from being a child to being an adult," Banna concluded.

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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New York disability-rights advocates are celebrating the 34th anniversary of the passage of the Americans with Disabilities Act.

The 1990 legislation prohibits discrimination against people with physical or mental disabilities. Along with becoming a standard part of employment law, it bolsters accessibility in the public environment.

As seminal as the ADA is, said Dr. Sharon McLennon Wier, executive director of the Center for Independence of the Disabled New York, more work must be done to achieve true accessibility.

"Even though ADA has been around for many, many years," she said, "there is still ignorance regarding what is true accessibility and how new construction at times can still be put up without following the principles of ADA universal access."

Downstate New York's transportation systems lack ADA compliance. Only 31% of New York City's Subway system is accessible to people with disabilities. Funding has been allocated to make the system 95% compliant. The work would have been done by 2055, but since Gov. Kathy Hochul paused congestion pricing, these plans have been put on hold indefinitely.

A New York City Comptroller report finds only 40% of the city's disabled population is employed. Statewide reports show post-pandemic employment for people with disabilities is recovering much slower than the nation.

To change this, said McLennon Wier, classroom instructional materials need to be more accessible, "having more raised line drawings, having more Braille available, having more assistive technology that can read various types of charts and diagrams."

She said she thinks certain industries are siloed, but once they open up to better comprehend universal accessibility, more people with disabilities will join them. One place this can work is in STEM fields, as only 3% of that workforce includes people with disabilities.

July is Disability Pride Month, and today is the 34th anniversary of the signing of the Americans with Disabilities Act.

Federal data show that more than 42 million Americans have a disability affecting their cognition, mobility, hearing, vision or ability to provide self-care or live independently.

"Studies over and over demonstrate that people with disabilities are a very solid
part of our workforce," said Joe Xavier, director of the California Department of Rehabilitation, which helps people with disabilities thrive at work. "They stay in their jobs, they're committed to the work that they do, and so there's much less turnover with people with disabilities, thereby reducing the cost and all the work associated with that."

Advocates have said companies are responsible for providing accommodation in the same way they provide chairs and technology for all their workers. They encourage companies to follow principles of universal design when building new spaces, so access is not an afterthought.

Britanny Comegna, a member of the State Rehabilitation Council, runs a company called Deaf and Disability Mediation Services and said people shouldn't be shy about direct communication with disabled people.

"When you meet a new disabled person," she said, "you have to ask, 'How do you want to identify? What do you need? And what can I learn from you?' Ask those questions because we really do appreciate that you're making that effort to connect with me and understand me as a person."

The Centers for Disease Control and Prevention is working to reduce health disparities among adults with disabilities, who have higher rates of smoking, obesity, heart disease and diabetes.


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