NASHVILLE, Tenn. - The threat of losing federal funding has parents of children who are intellectually- and developmentally-challenged (IDD) fearful that further cuts will threaten what little support they now have. Tennessee lawmakers have cut more than $47 million from IDD programs this year, and additional cuts will be on the table when the new legislative session begins in January.

Carrie Guiden, executive director of The ARC Tennessee, says a lack of public support creates a burden that often falls on parents. She cites teens who leave school programs that help them develop important skills as one example.

"They lose the skills they had when they were in school. Parents often have to quit work to stay at home with their son or daughter. They're becoming dependent on the system, and the more skills that child loses, the older they get, the more services they'll need if they ever become eligible. Or, when they go into crisis, you're looking at hundreds of thousands of dollars sometimes, to support that person – where, if they would have gotten the support right out of school, it may have been $10,000 a year."

Scotty Kimbrough, a Tennessee father of a developmentally-challenged daughter, says he has worked all his life and doesn't want anything given to him. He says his health is not great, however, and since the loss of his wife, he is now more fearful about his daughter's care.

"She's going to outlive me. Something's got to be set up for, not just her, but folks like her, where they can be taken care of and they're not turned loose. There's no way that she could live out on her own. I worry about that every day, you know. If something happened to me, where would she go?"

Guiden says lawmakers are not looking at the long-term consequences. She says more attention must be given to controlling costs and spending money efficiently to ensure adequate coverage for all Tennesseans.




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Nevada leaders and community groups are pleased with this week's decision by state utility regulators to reject NV Energy's request to raise its basic service charge for Northern Nevada customers by 175%.

The final decision allowed an increase of the basic service charge by $2 a month, bringing the total to $18.50 a month for homeowners, matching the rate for Southern Nevada customers. The state's largest electric utility had asked to raise the basic service charge to just over $45.

Ace Patrick, board member of the Nevada Statewide Independent Living Council, said the initial request would have put a tremendous strain on many, including people with disabilities and on limited budgets.

"Many people here in my apartment complex are on a fixed income," Patrick pointed out. "You literally are deciding, 'Well, how hot can I tolerate the summers here?' And there are people here who I've walked into their apartments and it's been intolerable."

In a written statement, NV Energy said, "Our teams are in the process of analyzing the various components of the order and what it means to northern Nevada customer bills and rates. We appreciate the work of the Public Utilities Commission of Nevada on this case." Changes go into effect Oct. 1.

NV Energy claimed the proposal was designed to help stabilize energy bills in Northern Nevada and protect the company's revenue streams from other competing forms of energy, like solar. Patrick contended the company is putting profits over the best interest of its customers.

"I've heard a lot of complaints about, 'Oh my gosh, the cost of utilities is just unreal - on top of rent, on top of everything else,'" Patrick noted.

Patrick added they receive assistance from the Reno Housing Authority but even so, their monthly income barely covers the rent. So, while a $2 increase may not seem like a lot, bills can quickly start to add up over time.

Although classes are back in session, all New York City public schools still aren't entirely disability accessible.

Reports find more than two thirds of schools across the five boroughs don't comply with the Americans with Disabilities Act.

The previous capital improvement plan invested $750 million for ADA school upgrades. But, this only made one third of schools accessible.

Molly Senack, education and employment community organizer with the Center for Independence of the Disabled New York, said this is unfortunate for students with disabilities.

"Those students are limited in the way they can choose what schools they want to attend," said Senack, "and it also means families and caregivers of students are limited in the way that they get to participate in their children's education."

Some groups want the city's Department of Education to allocate more than $1 billion for ADA compliance upgrades. Though this seems like a lot, it's making up for lost ground.

In 2015, the U.S. Attorney for the Southern District of New York reported the city failed to meet its ADA compliance requirements.

But Senack noted that the biggest challenge is staffing shortages throughout the Department of Education.

Beyond physical disabilities, New York City schools also face shortcomings in helping students with intellectual disabilities.

Reports show there aren't enough Special Education Certified teachers for students who need them. Senack said lacking professionals prevents some students from getting the education they need.

"For students with any disability," said Senack, "unfortunately, there is a pretty significant backlog in misrelated services where families have essentially filed complaints and requests for these missed services, and they are still waiting years later."

Lawsuits have been filed over the years to bring the city into compliance, though it's uncertain how effective those have been.

The most recent case relates to providing compensatory services for students who couldn't get regular school services during the pandemic.

Utah lags behind the national average of identifying children for autism.

In an effort to improve the state's standing, the Institute for Disability, Research, Policy and Practice at Utah State University will offer free, remote early identification of autism training for Utah service providers.

Janel Preston, special educator at the university, said when early identification is missed, children and families are not getting critical services to increase overall quality of life.

"It is really important for providers, as well as just the general public, to have a better understanding of what autism is," Preston urged. "And how we can help support and increase that awareness, acceptance."

Data from 2020 show 10 Utah children per 1,000 were identified to have autism by age 4. The national average is more than 20 per 1,000. Preston pointed out the Autism ECHO sessions will start on Sept. 25 and will aim to give educators, providers, case managers, administrators and families the tools they need to improve identification.

Preston acknowledged it is hard to pinpoint why Utah falls behind in the early identification of autism but suspects it could be due to lack of access. She added in comparison to other states, Utah is pretty rural, which can pose unique challenges.

"If you live along the Wasatch Front you have access to a lot of things," Preston explained. "But coming maybe from San Juan County, that is a long drive into the Wasatch Front, which requires families to take time off from work, if you have a child that is not able to make transitions very easily that can then cause a ripple effect."

Preston added children who go years without being diagnosed can struggle to navigate interactions with peers, manage school work and get a job later in life.

Preston hopes the program provides all kinds of Utahns the ability to foster connections and community.

"I could say, 'Hey, I have this kid or this family, this is what is going on, what are some things that I could do? What are some resources that I might not be aware of?'" Preston emphasized.


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