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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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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A Nevada program is aiming to centralize transition services and improve outcomes for children with disabilities.

It will help create a centralized hub for children and young adults to explore career and postsecondary opportunities. The initiative will also offer professional development to service providers in an effort to enhance and increase the availability of resources.

Jennifer Kane is the project director of The Nevada Transitions Roadmap through Innovative Partnerships. She explained last year the state's Department of Education secured a $10 million grant from the federal government, which will be used over the next five years.

"There isn't really a system that takes us from age 10 to age 24 by itself," Kane pointed out. "If they're trying to get us to a truly seamless transition, they gave us an age range which we have to work together to get there."

Kane noted the program will be approaching the end of its first year later this month. She added just last week, it had its first Nevada TRIP Advisory Work Group meeting to bring together stakeholders, including significant participation from children and youths with disabilities and members of their support systems.

Ashley Price, co-project director for the Nevada Department of Education, said one of the main goals of Nevada TRIP is to cultivate strong partnerships with agencies and break down the state's current siloed systems presenting significant challenges to families.

"One very unique thing about Nevada is how rural Nevada is," Price emphasized. "So of course we get a lot of concentration in Washoe County and Clark County, and the rest of the state struggles. They might not have certain age ranges of students and young adults who have needs and then all of a sudden they do."

Price added many people across Nevada simply do not know what resources and support are available.

"Even as we are diving through this, trying to map out different agencies and different resources we're learning new things that we had no idea and that we are going to go ahead and include," Price explained. "That's probably the biggest misconception, is that people don't know that there is help or don't think there is help where they are."

On the flip side, Price stressed many agencies are ready to help but cannot find the necessary recipients, which is precisely one of the areas Nevada TRIP aims to help bridge.


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