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.

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.

Big Tex is up and the Ferris wheel is spinning at the 138th State Fair of Texas. And again, this year the Fair is making special accommodations for anyone who might be sensitive to the bright lights and loud sounds.

For the sixth year, the Fair is offering Sensory Friendly Mornings every Wednesday from 10 a.m. to 1:30 p.m. Taylor Pulfer, the fair's director of communications, said the program makes the event accessible for everyone.

"We turn down all of the flashy blinky lights, we turn down all of the sounds, you won't hear music throughout the grounds, even Big Tex's voice is lowered," Pulfer said, "and so it gives individuals who might struggle with sensory sensitivities an easier experience. "

The Fair has also created a special guided itinerary with a list of activities and exhibits that are easy on the eyes and ears. More information is available at BigTex.com/Sensory.

Around 2.3 million people attended the Fair during its 24-day run last year. The fairgrounds are open to the public on Sensory Friendly Mornings, but Pulfer said the Midway will be designated as a "quiet zone" during the special hours.

"We still can't take away all of the sounds that might be occurring out on the grounds, and we understand that there might be a situation where maybe you have a four-year-old child who has autism and he's just having a meltdown, and you need to step away," Pulfer said. "That's that place that we've created for you to take your child and be able to have a second to depressurize."

She said a restroom made specifically to accommodate people with disabilities will also be available on Wednesday mornings.

"That might need that extra changing space to assist, maybe, an adult with a disability," Pulfer said. "Think of all the sounds that come from a bathroom. You have your hand dryers, all of the flushing, all of the sinks, and so sometimes getting - like a child with autism - into a bathroom, that itself can cause the meltdown. "

The Fair runs through Oct. 20.


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