Challenges pile up for Iowans with disabilities

Eight years after Medicaid privatization, Iowans with disabilities face 7-year waitlists, ‘forced poverty,’ and more.

There are 402,615 Iowans who report having a disability, making up nearly 13% of the population. These Iowans face significant challenges in accessing the services they need to live and work.

While Iowans largely regard themselves as compassionate and supportive of people with disabilities, their state government’s actions in recent years haven’t always reflected those values. From Medicaid privatization to the undercutting of Area Education Associations to long wait times for help, many Iowans with disabilities have seen their struggles increase in recent years.

Iowa Medicaid offers services through disability waivers to help certain categories of disabled Iowans live independent lives in their own homes. However, advocates say the process of obtaining these waivers is taking too long. 

“Right now, it can be years before you can get a waiver,” said Ben Grauer, a disability rights advocate in Iowa City. “That length can become a real challenge.”

Called the Home and Community-Based Services program, it has a cap for each waiver category. Because the number of people seeking waivers exceeds that cap, the waitlists continue to grow. As of October, there are 22,093 people waiting for a waiver, with wait times ranging from 5 years for an intellectual disability waiver to 7 years for a brain injury waiver. Iowa is consolidating its seven categories of waivers from seven to three, but it’s unclear if this will increase the available waivers for Iowans. 

While Oklahoma’s state legislature appropriated $32.5 million to end its 13-year waitlist in 2022, Iowa’s legislature only allocated $1.7 million this year to boost slots for those seeking waivers for intellectual disabilities. And Oklahoma’s waitlist was four times smaller than Iowa’s. 

Iowa Department of Health and Human Services did not respond to a request for explanation.

Beyond the waitlist, Iowans with disabilities face other challenges. State Rep. Josh Turek, D-Council Bluffs, had a bill last session aimed at bringing an end to what he called “forced poverty” for working Iowans on Medicaid. Currently, Iowans with disabilities must have a net family income less than 250% of the federal poverty level to qualify for Medicaid. Turek says this disincentivizes Iowans with disabilities from working and even from marrying as the increased income could end their health care. 

“We should not have a policy preventing people from working,” Turek said, pointing to the need for more, not fewer, people in Iowa’s workforce. 

READ MORE: When getting a raise means losing health care: Disabled Iowans fighting back.

Turek sponsored a bill last session to raise the income limits and eliminate asset caps for working Iowans on Medicaid, but it died in committee.

State Rep. Josh Turek is pushing for legislation to help Iowans with disabilities. He is the sole permanently disabled representative in the Iowa Legislature.

“You don’t want people taking advantage of the system, but that’s few and far between from what’s happening,” he said. “I’m happy to play with those numbers going forward. But we have to do something.”

While Turek’s bill did not see the light of day, state leaders have put other policies into effect.

This year, Gov. Kim Reynolds’ legislation reorganizing the Area Education Agencies passed. While the AEAs were once the source of special education services for children with disabilities, that funding is now being given to local school districts. How the rollout will impact education is still unfolding. But already the AEAs are hemorrhaging employees. 

The year before, Iowa Republicans passed a bill that made it more difficult to receive SNAP food benefits—46.7% of the SNAP recipients have a disabled member in the household, according to the USDA. 

And it’s been eight years after Iowa handed over the management of its multibillion-dollar Medicaid program to out-of-state private insurers called Managed Care Organizations (MCOs). Since then, there’s been an 891% increase in illegally denied services or care, according to a 2021 state auditor report. Last session, Iowa’s Senate Democrats signed onto a bill to give long-term service recipients the option to have their Medicaid services overseen by DHHS and not the MCOs, but it never left committee.

Despite the challenges, Turek remains optimistic, pointing to a recent policy change that no longer requires an in-person doctor visit to get a wheelchair repaired. However, Managed Care Organizations still require prior authorization for these repairs, if Medicaid is to cover them.

The challenges are mounting, but the ideas are out there for improving how we support Iowans seeking to live independent lives and work in our state.