HELENA, Mont. -- Families with people who have disabilities can sometimes feel isolated because of their experiences.

Siblings of people with physical, developmental or mental-health diagnoses especially have unique experiences, which include challenges and rewards.

Abbey Guza, a licensed clinical social worker who hosts "SibShops," which provide support for Montana families who have a child with a disability, said siblings sometimes feel as if some of their parents' attention is pulled away from them, but ultimately they're resilient.

"They're really proud of their ability to help that brother or sister out," Guza observed. "And I see a lot of kids who have a really incredible amount of knowledge, often times well beyond their years, about what their sibling with a disability needs."

Guza noted families can feel alienated and are even more isolated than usual because of COVID-19.

While her SibShops can't happen in person, Guza will host three virtual sessions with families over the next month, starting with a session for parents and caregivers on Feb. 22.

Grace Lee Banna, whose older sister has a neurodevelopmental disability that has slowed her capacity for picking up new skills, said there are ups and downs with her sister.

"I've learned to be more willing to help even though at first I did not want to help at all," Banna acknowledged. "But the other half of it is honestly kind of fun to be able to try new things with her and be able to teach others about her, like my friends or anyone that comes across her."

Jen Banna, Grace Lee's mother, is coordinator for the Montana Family to Family Health Information Center, based at the Rural Institute for Inclusive Communities, which helps families navigate health care and also help providers, state agencies and lawmakers understand the needs of families who have children with special needs.

"We believe that the health of the family, including the mental health, is improved when we provide resources that help families cope better with the special conditions that their kids have," Banna explained.

The deadline to register for Guza's SibShop, which is hosted by the Montana Family to Family Health Information Center, is Monday.


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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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