disabilities

Luke X. Martin / KCUR 89.3

When Jordan Reeves was born, her mother was the first to notice something was different.

Jordan's mother Jen performed the typical finger-toe count moms do on their newborns and came up five digits short. The baby was missing the bottom half of her left arm, which stopped just after the humerus.

Amidst the chaos of the discovery, Jen and her husband found peace.

Luke X. Martin / KCUR 89.3

Jordan Reeves can get a little annoyed when people stare at her left arm, but "I ask them if they have any questions for me," the 11-year-old says. Today, we speak with Reeves about her multifaceted work spreading acceptance of limb difference. Then, we meet a couple of sportsmen who take to Midwest streams and lakes to pull stubborn catfish out of the water by hand. It's a practice with many names, but the most fun one to say is "noodling."

Laura Ziegler / KCUR-FM 89.3

In the last few years, professional sports teams have begun to realize that noisy stadiums can be hard on people with autism and other special needs. Among them are the Kansas City Royals, whose front-office officials happen to include several fathers of such kids.

File Photo / KCUR

On any given school day at Kansas City Kansas Public Schools, students with disabilities receive an array of medical and support services, from physical therapy to help from nurses.

The services are meant to ensure access to education for all children, said Michelle Colvin, director of special education for the district.

“All means all,” Colvin said. “It benefits us to include everyone in our education system.”

Jim McLean / Kansas News Service

Editor’s note: This story was updated at 3:10 p.m. June 27.

Disability rights advocates are among the strongest opponents of the Obamacare replacement legislation that Republicans are attempting to push through Congress.

If anything resembling the bill that the U.S. House approved in May or the one the Senate is considering passes, they say it will roll back decades of progress. 

Alex Smith / KCUR 89.3

By the time Stephenie Hashmi of Lenexa, Kansas, was in her mid-20s, she had achieved a lifelong dream: She was the charge nurse at one of Kansas City’s largest intensive care units. But even as she cared for patients, she realized something was off with her own health.

“I remember just feeling tired and feeling sick and hurting, and not knowing why my joints and body was hurting,” Hashmi says.

Hashmi was diagnosed with systemic lupus, a disease in which the body’s immune system attacks its own tissues and organs.

Kansas City Area Transportation Authority

The Kansas City Area Transportation Authority is launching an app next week to help people with disabilities get a ride. The launch follows a year of development and two months of trials in a partnership with the company Transdev.

Anyone can use the RideKC Freedom app, but it’s specially designed for the more than 300,000 people with disabilities who use the KCATA’s subsidized paratransit services. CEO Robbie Makinen says the Uber-style app is an innovation for the public transit agency. 

Elle Moxley / KCUR 89.3

Missouri Treasurer Eric Schmitt was in Kansas City Tuesday to promote MO ABLE, a new savings program for people with disabilities.

“Look, when my son was born, we opened up a college savings account. You have all those hopes and dreams,” says Schmitt. “Emotionally, psychologically, that’s tough for families.”

Schmitt's 12-year-old son is nonverbal on the autism spectrum.

The tax-advantaged accounts function similarly to Missouri’s 529 college savings plan and can be used to pay for assistive technology and long-term care.

Andy Marso / Heartland Health Monitor

Roy Alcorn shot pool with friends last week as sunlight streamed through the open door of a small building at Equi-Venture Farms.

A month earlier, Alcorn was living at Osawatomie State Hospital 24 hours a day, seven days a week.

Alcorn’s new arrangement is part of a pilot program spearheaded by Ben Swinnen, executive director of Topeka-based Equi-Venture, and Tim Keck, head of the Kansas Department for Aging and Disability Services.

File photo

A public letter by the head of the Kansas Department for Aging and Disability Services praising KanCare’s effect on Kansans with disabilities has drawn a string of rebuttals from people who provide disability services.

Tim Keck’s letter was published Oct. 24 on the Wichita Eagle editorial page.

File photo

Judy Talbot is trying to get her daughter out of a state facility for Kansans with intellectual and developmental disabilities. Zack Zbeeb is trying to get his son into one.

But both ultimately have the same goal: to do a “medication washout” to determine whether the prescription drugs their autistic kids take are helping to control their recent dangerous psychotic episodes or actually causing them.

Zbeeb, from Wichita, wants his 15-year-old son to be weaned off his medications at a place like Parsons State Hospital and Training Center.

Andy Marso / Heartland Health Monitor

The employees of Cornerstone Supports gathered last week at a house in Olathe with their clients — adults with intellectual and developmental disabilities — to plan their last day together.

Cornerstone, based in Olathe, will close later this month, and its 19 clients will have to find other companies to help them with daily tasks so they can stay in their own homes.

The regular gatherings at the Olathe house where three Cornerstone clients live will end Oct. 28.

“We should do something,” said Brandon Thompson, one of the clients.

Megan Hart / Heartland Health Monitor

Several Kansans are scheduled to meet Tuesday with federal officials and counterparts from across the country to discuss issues related to the privatization of state Medicaid programs.

Andy Marso / Heartland Health Monitor

University of Kansas researchers plan to use a $1.5 million federal grant to help Kansans with disabilities catch up to their non-disabled peers in several health categories.

Jean Hall, director of KU’s Institute for Health and Disability Policy Studies, will lead a team of partners from nonprofit organizations and government agencies to improve physical activity, nutrition and oral health for Kansans with disabilities.

Kansas is one of 19 states to get the grants from the Centers for Disease Control and Prevention.

Health Insurance Coverage in the United States: 2015

The uninsured rates in Kansas and Missouri continue to drop.

But they’re declining faster in states that have expanded Medicaid, the health insurance program for low-income families, seniors and people with disabilities.

New data out Tuesday from the U.S. Census Bureau estimates that Kansas’ uninsured rate dropped to 9.1 percent in 2015, down from 10.2 percent the year before and 12.3 percent in 2013.

People in Atalissa, Iowa, knew about the intellectually disabled men who lived in the town’s old schoolhouse and worked in the nearby turkey plant, but they didn’t know those men were being neglected by a business set up to provide cheap labor. It's a heart-breaking story told by New York Times reporter Dan Barry in The Boys in the Bunkhouse.

Heartland Health Monitor

The Disability Rights Center of Kansas is seeking more information from the state about its backlog of Medicaid applications to determine whether Kansas is breaking federal rules.

Rocky Nichols, the center’s executive director, said the organization has filed an open records request to examine whether the state is doing what the federal Centers for Medicare and Medicaid Services requires for Medicaid applicants stuck in the backlog.

Andy Marso / Heartland Health Monitor

A proposal to reimburse some KanCare providers at a higher level based on patient outcomes drew skepticism from a crowd of hundreds who gathered Tuesday afternoon in a Topeka hotel ballroom.

Tuesday’s public meeting was the first in a series that state officials are hosting as they prepare to renew their federal application for KanCare, the state’s $3 billion managed care program that privatized all Medicaid services under three insurance companies in 2013.

Similar gatherings are scheduled Wednesday in Kansas City, Kan., and Wichita and Thursday in Pittsburg and Hays.

State officials have scheduled five meetings to gather public comment on KanCare in advance of renewing contracts to administer the state’s privatized Medicaid program.

The contracts currently held by UnitedHealthcare, Amerigroup and Sunflower State Health Plan (a subsidiary of Centene) expire in 2018. Those private insurance companies serve as managed care organizations that operate KanCare.

Susan Mosier, secretary of the Kansas Department of Health and Environment, said her agency wants to hear from the public on what to include in the next contracts.

Andy Marso / Heartland Health Monitor

Gov. Sam Brownback’s administration will not fight a legislative directive to postpone the integration of Medicaid waiver services for Kansans with disabilities, according to an email sent by an administration official.

The Legislature passed a budget early Monday that included a provision prohibiting spending in the next fiscal year on any waiver integration plan to be implemented before July 2018.

Susie Fagan / Heartland Health Monitor

Legislative budget negotiators have agreed to insert a provision in the state budget preventing Gov. Sam Brownback’s administration from consolidating Medicaid support services for Kansans with various disabilities.

The Medicaid waiver integration plan has been a point of contention between the administration and a legislative subcommittee appointed to study the issue. The subcommittee issued a report recommending the integration be delayed a year to Jan. 1, 2018, and requesting more details on the plan.

Andy Marso / Heartland Health Monitor

When Shannon Lindsey moved from Missouri to Kansas two years ago, she decided she wanted to go to Johnson County Community College to get a nursing degree that would make her more employable.

Lindsey, now 49, has several disabilities, so she contacted Kansas’ vocational rehabilitation office for assistance. In Missouri she had the same vocational rehabilitation counselor for years — a state worker who understood her needs, what was available to help her and how to get it to her quickly.

Courtesy Bill Stovall

A statewide registry is in the works to make it easier for Medicaid patients to find qualified, reliable personal care workers.

That’s good news for Bill Stovall of Topeka and others like him who help direct care for their family members.

Stovall has a long list of complaints against personal care workers who have cared for his sister in recent years, including punctuality problems and a lack of training.

Andy Marso / Heartland Health Monitor

Hundreds of Kansans with developmental disabilities rallied Wednesday outside the Capitol, as legislators said they are close to reaching a deal with Gov. Sam Brownback to postpone changes to disability services.

Rep. Les Osterman, a Republican from Wichita, told the crowd that a legislative proposal to delay the administration’s Medicaid waiver integration plan until 2018 was a done deal.

“I stopped the waiver integration,” Osterman said. “At least until 2018.”

Alex Smith / Heartland Health Monitor

Editor's note: Finn Bullers, a champion of disability rights, unexpectedly died Sunday of complications related to pneumonia. He was 52. For many years, he was a reporter at The Kansas City Star, where he covered Johnson County government. Dan Margolies, editor of KCUR-based Heartland Health Monitor, has this remembrance.

Advocates for elderly and disabled Kansans are anxiously awaiting the publication of the state’s plan to combine seven Medicaid waivers into one.

The waivers currently provide home and community-based services for people within a range of support categories, including developmental disability, physical disability, traumatic brain injury or frail/elderly.

Jillisa Washington

The Kansas Department for Aging and Disability Services is reviewing a waiting list for developmental disability services after counties reported discrepancies between how many residents they have waiting and how many are on the state’s list.

There are more than 3,000 Kansans with intellectual and developmental disabilities (I/DD) on the KDADS waiting list for Medicaid-covered support services meant to allow them to remain in their homes and communities rather than live in institutions.

Andy Marso / Heartland Health Monitor

Cabinet officials say Kansas’ quest to combine Medicaid waivers for people with seven categories of disabilities is intended to provide better care and outcomes, not cost savings.

But costs will go down if care improves as intended, they say.

Officials from the Kansas Department of Health and Environment and the Kansas Department for Aging and Disability Services are beginning a statewide listening tour on the proposed changes after briefing a legislative committee on them Friday.

Andy Marso/KHI News

  Lt. Gov. Jeff Colyer was on hand Thursday for the unveiling of a book to educate children about interacting with people who have disabilities.

“Darby Boingg Has an Adventure and Meets a Person with Disabilities” features Boingg, a wallaby with human characteristics, who meets Ian, a young man in a motorized wheelchair.

Sunflower State Health Plan hosted the book signing at the Topeka and Shawnee County Public Library. The event featured  author Michelle Bain and Ian Kuenzi, a Topekan with cerebral palsy who was her inspiration.

C.J. Janovy / KCUR

First Friday in Kansas City's Crossroads neighborhood is always a street party. But on the first Friday in August, the third annual Southwest x Central Street Fest spotlights artists who don't typically get as much exposure as others: the musicians, writers and artists of Imagine That!, a non-profit studio of artists with developmental and intellectual disabilities.

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