WATERLOO, Iowa -- Advocates for Iowans with disabilities are sounding the alarm over what they describe as a caregiver crisis, pleading with lawmakers to give the issue more priority, so these individuals are not pushed from their homes because of the scarcity of providers.

Tucker Cassidy, a person with quadriplegia from Waterloo, said the workforce shortage has been building for years, but in the past month and a half, it has become much worse.

He noted it is difficult for the agency he works with to send over enough caregivers to help with his daily routine. Stuck in bed more than he is used to, Cassidy admitted the shortage leaves him worried about his future.

"Is this going to be the week that they kick me off?" Cassidy questioned. "And then, where am I supposed to go? You know, I own my own house."

Advocates say the crisis is largely driven by low wages for caregivers. According to Indeed, the average starting pay for in-home caregivers in Iowa is around $13 an hour.

Lutheran Services in Iowa estimates it has been forced to reduce its client base by 350 in recent years. The shortage comes as Iowa touts a budget surplus of $1.24 billion.

Matt Grillot of DeWitt has used a wheelchair most of his life due to a spinal injury. He has been in his own house for the past 18 years, but he has struggled to hire a caregiver in recent months, forcing him to consider alternatives he would rather avoid.

"I have broken down within the last month and started looking at nursing homes and group homes," Grillot acknowledged.

But he said he faces barriers in moving to those places, adding to his stress in planning his care.

Cody Lewton, director of services for people with disabilities at Lutheran Services in Iowa, said they are down roughly 250 caregivers, citing the struggle to pay them enough money.

"It's less than a living wage, and it's only become worse," Lewton observed. "The funding has, over the last 20 years really, has not kept up with the cost of living."

The Iowa Developmental Disabilities Council said it is also concerned about the crisis, adding it will be the group's number one legislative priority next session.

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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