New group, Iowa Disability Votes Count, aims to unite, educate disabled Iowans before election

Gov. Terry Branstad's decision to hand over the state's $5 billion Medicaid program to three out-of-state insurance companies on April 1 was meant to free up state dollars for other budget items and also improve patient outcomes.

But the move also had an unintended consequence — a political one.

The transition to managed care and the conversations that surrounded it frustrated many Medicaid recipients, who felt that some of their state legislators weren't listening to them, said Rhonda Shouse, a Medicaid recipient and outspoken critic of the transition.

Shouse also is an administrator of MCO Watchdog — a Facebook with more than 1,700 Iowa Medicaid members, caregivers and providers. Every day she sees and hears from families who have run into problems under the new Medicaid system, she said.

'We now understand the importance of having people in office who listen and understand their constituents,' she added.

With an election approaching, MCO Watchdog, several statewide groups that include Disability Rights Iowa, and a handful of not-for-profit organizations and providers have banded together to form Iowa Disability Votes Count. The group is working to educate and mobilize Iowa's disabled population to take political action.

Shouse already has some experience in this arena — she organized two bus trips to the Capitol in December 2015 and February 2016 for Medicaid recipients and their caregivers to protest the transition and talk with legislators about the importance of oversight. Both trips took about 75 people from the Corridor and Sioux City to Des Moines.

Shouse said she and others also emailed state legislators — Republicans and Democrats — regularly throughout the 2016 session to bring up concerns and frustrations related to the managed-care transition and what they believed was a lack of oversight.

'We just weren't really getting responses from Republicans, and if we did, it was dismissive,' she said.

Iowa Disability Votes Count goal is to vote legislators it views as unsupportive of their needs out of office and keep those who are supportive in their seats. They plan to be strategic in their efforts, she said, and will focus on districts where they can have an impact.

'We're worn down, we have been beat up by the health care system and are disenfranchised,' Shouse said. 'Historically we've had a bad voting record. But we're aiming high — we may not unseat everyone we want to, but no one expects us to achieve anything.'

The group is organizing town-hall meetings to take place before the primaries in Cedar Rapids, Des Moines and Sioux City, organizers said. The meetings will help teach attendees about voting rights, how to participate in the process and absentee voting if they are not physically able to get to a polling location. Elected representatives and their opponents also have been invited to participate.

Iowa Disability Votes Count's first meeting in Cedar Rapids is scheduled for 4 to 6 p.m., June 1, at the Cedar Rapids Public Library downtown.

'The coalition is an unanticipated outcome' of the Medicaid transition, said Reyma McCoy McDeid, executive director of Central Iowa Center for Independent Living. 'Those with disabilities are more mobilized than ever before. They've experienced a lot of frustration and don't know what to do with it.'

McCoy McDeid said Iowa Disability Votes Count hopes to build on that momentum and give individuals an avenue to express displeasure with elected representatives they believe have not represented them.

'This is an initiative operating on zero dollars — we don't have the funds to do a lot, but we're working with we've got,' McCoy McDeid said.

And what they've got is numbers. The disabled population is the state's largest minority group, she said. According to a 2013 report from Iowa's state data center, there were more than 181,500 Iowans with disabilities aged 18 to 64 in 2013. And more than 51 percent of that population does not have a private health insurer — meaning they're on Medicaid, Medicare or uninsured.

'We want to deliver the message clearly, that if you don't feel like your legislator is representing you, vote in those who will,' McCoy McDeid said. 'People feel like their vote, their voice doesn't count. But if we mobilize a large group of people to vote at the same time, there are powerful things that can happen.'

There are 25 state Senate seats and 100 state Representative seats up for re-election this year, she said, and with enough organization the group can have a serious influence.

'Right now we don't have a spot at the table, but things involving us are going to continue to be on the menu,' she said.