Madison, WI - The refrigerator and kitchen cabinets become "household enemies" when parents learn they have a child with Prader-Willi Syndrome. The rare genetic disorder leads to a lifelong battle with food that manifests itself as an intense drive to eat and little ability to control that drive. May is Prader-Willi Syndrome Awareness Month.

Mary Lynn Larson, with the Prader-Willi Syndrome Association of Wisconsin (PWSA), is the mother of a 16-year-old with PWS. She says these children are prone to obesity along with other challenges, and monitoring their behavior is a full-time job.

"The child never feels full; there are behavior problems and learning issues. Many families have to lock all access to food - all the cabinets, and the refrigerator as they get older."

If access to food is not adequately supervised, she explains, the inability to feel satiated can lead to potentially life-threatening medical conditions associated with obesity. Larson says advances in medical technology can't do much for these children, but new PWS tests are a plus.

"We haven't found anything effective to help with weight loss. Fortunately, we've gotten much earlier diagnoses."

Caring for a PWS child can be very trying, adds Larson. While respite help is important, it is difficult to obtain because of these children's special needs. For more information about Prader-Willi Syndrome, reach the PWSA at 1-866-797-2947.



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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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