{"id":982084,"date":"2026-08-05T10:08:21","date_gmt":"2026-08-05T10:08:21","guid":{"rendered":"https:\/\/www.europesays.com\/us\/982084\/"},"modified":"2026-08-05T10:08:21","modified_gmt":"2026-08-05T10:08:21","slug":"powerless-indiana-families-describe-the-toll-of-losing-medicaid-access","status":"publish","type":"post","link":"https:\/\/www.europesays.com\/us\/982084\/","title":{"rendered":"\u2018Powerless\u2019: Indiana families describe the toll of losing Medicaid access"},"content":{"rendered":"

INDIANA (Indiana Capital Chronicle<\/a>) – The notice arrived after Taylor Holliday-Smith thought she\u2019d already done everything the state asked.<\/p>\n

The letter from earlier this summer said her 5-year-old son, Thomas, would lose Medicaid coverage unless the state received updated income verification. Holliday-Smith drove to her local Family and Social Services Administration office in Huntington, updated the family\u2019s address and turned in the documents she was told were needed. She left believing the problem had been resolved.<\/p>\n

Days later, however, Thomas\u2019 nursing agency called with different news. His Medicaid coverage had been terminated.<\/p>\n

For the next two weeks, Holliday-Smith spent hours on the phone with FSSA, returned to the county office with more documentation and tried \u2014 \u201cpainstakingly\u201d \u2014 to understand why the state kept asking for new information. At one point, she said, she was told Thomas needed an asset verification.<\/p>\n

\u201cThomas is 5,\u201d she recalled thinking. \u201cHe has no assets.\u201d<\/p>\n

The interruption threatened far more than an insurance card. Thomas, who has cerebral palsy, is nonverbal, deaf and unable to walk. Medicaid helps cover private-duty nursing, respite care and other services that he relies on every day, allowing him to remain safely at home with his family.<\/p>\n

\u201cNot gonna lie,\u201d Holliday-Smith said. \u201cI cried. The frustration had finally boiled over to tears.\u201d<\/p>\n

Thomas\u2019 Medicaid coverage was eventually restored in mid-July after the family repeatedly contacted FSSA and sought help from state lawmakers. Getting Thomas back on Medicaid brought relief, Holliday-Smith said, but not \u201cpermanent\u201d peace of mind.<\/p>\n

\u201cIt\u2019s like you\u2019re in fight mode, fight mode, fight mode,\u201d she told the Indiana Capital Chronicle. \u201cThe stress is high. The anxiety is high. And then all of a sudden, \u2018Oh, it\u2019s magically better.\u2019 But then you\u2019re trying to come down off of it \u2026 and you\u2019re like, \u2018Well, what\u2019s going to happen the next time?\u2019\u201d<\/p>\n

Holliday-Smith is one of thousands of Hoosiers whose lives have been upended during Indiana\u2019s post-pandemic Medicaid eligibility renewals. The process has left some families fighting for weeks or months to restore coverage they believed they still qualified for. Others have lost benefits altogether under changing eligibility rules.<\/p>\n

Interviews with Medicaid recipients, parents, caregivers, enrollment counselors and disability advocates describe a system in which many Hoosiers remain eligible for coverage but struggle to navigate increasingly complex renewal requirements, often leading to delayed medical care or interruptions to disability services.<\/p>\n

Others said policy changes have left them no longer eligible for Medicaid or certain services, forcing difficult decisions about how they\u2019ll continue paying for medications, doctor visits and disability support.<\/p>\n

The Capital Chronicle spoke with Hoosiers across the state whose experiences reveal how the Medicaid renewal process breeds uncertainty for many families, from confusing notices and repeated eligibility checks to long waits for answers and fears that essential health coverage could disappear with little warning.<\/p>\n

\u2018I don\u2019t know what else they want from me\u2019<\/p>\n

For 22-year-old Ellie Dahlkamp of Fort Wayne, that uncertainty has left her waiting \u2014 and even rationing medication she says she can\u2019t safely live without.<\/p>\n

Just days before speaking with the Capital Chronicle last month, Dahlkamp had finally begun rebuilding her life. After spending much of the previous two years moving between shelters, motels and friends\u2019 couches, she and her boyfriend had moved into an apartment. She\u2019d started a second job and had recently bought her first dependable car.<\/p>\n

Dahlkamp said she first learned something was wrong during a doctor\u2019s appointment, when she was told her Medicaid coverage had ended. She later logged in to FSSA\u2019s online benefits portal and discovered her application had already been denied \u2014 despite paperwork she received showing she still had four days remaining before the deadline to submit the requested verification documents.<\/p>\n

When she visited her local office, Dahlkamp said she was told the application had been denied before the deadline because staff assumed she couldn\u2019t provide the documents in time. After she submitted them, the application returned to pending status.<\/p>\n

Weeks later, she\u2019s still waiting for a decision.<\/p>\n

\u201cI did everything they asked me to do,\u201d Dahlkamp said. \u201cI don\u2019t know what else they want from me.\u201d<\/p>\n

Without Medicaid, Dahlkamp said she stopped filling prescriptions for migraine medication and antibiotics. She also began rationing Eliquis, the blood thinner she takes to prevent dangerous blood clots, because she couldn\u2019t afford the roughly $350 monthly cost without insurance.<\/p>\n

\u201cI can\u2019t be without my Eliquis,\u201d Dahlkamp said. \u201cBlood clots have almost killed me multiple times. It\u2019s literally a matter of life and death for me.\u201d<\/p>\n

The lapse in coverage also forced her to postpone a specialized nerve test her neurologist ordered after she began experiencing problems with one of her feet. Without Medicaid, she said, the procedure would cost about $2,000 out of pocket \u2014 money she doesn\u2019t have.<\/p>\n

\u201cNot everyone is able to get a job that offers insurance, and even some jobs that do offer insurance, it\u2019s really sucky,\u201d Dahlkamp said. \u201cHonestly, I don\u2019t know how I\u2019ve been staying calm. It really is scary because I don\u2019t know what\u2019s going to happen.\u201d<\/p>\n

Finding their way through the system<\/p>\n

Nearly 170 miles south in Corydon, Tommie Siebert said years of navigating Medicaid have left her family bracing for problems each time their coverage comes up for renewal.<\/p>\n

Siebert is disabled. Her husband, Zachary, has sought disability benefits after heart problems forced him to stop working. Their son, Riley, who has autism, ADHD and other disabilities, receives services through a Medicaid waiver.<\/p>\n

\u201cIt\u2019s been pretty much a roller coaster the whole time we\u2019ve been on it,\u201d Tommie said. \u201cYou never know from one renewal to the next what\u2019s going to happen.\u201d<\/p>\n

Tommie and Zachary both rely on Medicaid for their own healthcare, while the program also covers Riley\u2019s therapy services.<\/p>\n

Zachary additionally depends on Medicaid to continue receiving Suboxone treatment \u2014 medication needed for substance use disorder \u2014 which he\u2019s been on for nearly a year. After learning his Medicaid coverage had lapsed, Tommie said she feared he might not even be able to see his provider at his next appointment.<\/p>\n

\u201cIf it\u2019s not fixed, they won\u2019t see him unless we pay out of pocket,\u201d Tommie said days before her husband\u2019s next appointment in mid-July. \u201cWe can\u2019t afford that.\u201d<\/p>\n

Without treatment, she said, Zachary could quickly go into severe withdrawal. The possibility of losing access to medication \u2014 after nearly three years without a relapse \u2014 has left her family fearful that months of progress could unravel because of an interruption in coverage.<\/p>\n

And with more Medicaid changes on the horizon, Tommie said she worries \u201cevery day.\u201d<\/p>\n

\u201cIt\u2019s always in the back of your mind,\u201d she said. \u201cYou just don\u2019t know. And you almost feel powerless.\u201d<\/p>\n

In Indianapolis, physical therapist Lori Harter didn\u2019t learn there was a problem with her adult son Elliot\u2019s Medicaid coverage from the state.<\/p>\n

She learned from Elliot\u2019s case manager.<\/p>\n

That call came as a shock. Until then, Harter had no reason to believe anything was wrong.<\/p>\n

\u201cWe had no idea that we were no longer qualified,\u201d she said.<\/p>\n

What followed became months of trying to figure out how the family had ended up there.<\/p>\n

Harter called FSSA. She scheduled dozens of phone appointments. She drove to the local office. She gathered records and repeatedly tried to determine what information the agency still needed.<\/p>\n

One appointment, she recalled, ended almost as soon as it began. She arrived at the FSSA office only to be told that no one had actually been assigned to meet with her.<\/p>\n

\u201c\u2018Oh yeah, you have an appointment,\u2019\u201d Harter recalled an employee telling her. \u201c\u2018But nobody\u2019s assigned to it. Sorry for you.\u2019\u201d<\/p>\n

The family\u2019s frustration continued to mount. Eventually, Harter hired an attorney to help navigate the appeals process and work through the questions surrounding Elliot\u2019s eligibility. She estimates the family spent thousands of dollars out of pocket while trying to restore services and coverage.<\/p>\n

But the financial costs were only part of it.<\/p>\n

The process itself became a second job. Harter said she spent countless hours making phone calls, collecting paperwork, tracking deadlines and trying to understand why answers seemed to change depending on whom she spoke with.<\/p>\n

Harter archives her efforts in multiple overflowing binders, folders and notebooks filled with eligibility notices, correspondence, handwritten notes and records accumulated over years of trying to keep Elliot\u2019s services in place.<\/p>\n

Behavioral management services funded through Medicaid helped Elliot, who has autism, learn to drive, secure housing and find part-time employment, Harter said. He now works three days a week, lives independently and hopes to eventually work full time. But because of his disability, she said, those milestones still depend on ongoing support.<\/p>\n

\u201cHe\u2019s done fabulously with supports,\u201d Harter said. \u201cThose services have gotten us where we need to go.\u201d<\/p>\n

Without them, she worries years of progress could slip away.<\/p>\n

\u201cJust waking up every morning, it\u2019s constantly on my mind. It\u2019s mentally draining. You just don\u2019t know what\u2019s going to happen. \u2026 It makes it hard to focus on anything else,\u201d Elliot said. \u201cIf I couldn\u2019t have access to (Medicaid-funded resources), I think I\u2019d just give up entirely. Everything I\u2019ve worked on would just go spiraling downwards.\u201d<\/p>\n

Getting navigators involved<\/p>\n

Such stories have become increasingly familiar to enrollment specialists around Indiana.<\/p>\n

Ann McCafferty, who leads the Indiana Rural Health Association\u2019s Healthy Families Alliance initiative<\/a>, said the organization\u2019s navigators spend much of their time helping families understand renewal notices, respond to verification requests and restore coverage after procedural problems interrupt benefits.<\/p>\n

The questions have changed over the last few years, she said.<\/p>\n

Instead of simply helping someone enroll in Medicaid, navigators increasingly help families understand what information the state needs to complete renewals and how to submit it correctly.<\/p>\n

\u201cMember requirements are just higher,\u201d McCafferty said. \u201cThat\u2019s where we come in \u2026 to help families address these new requirements.\u201d<\/p>\n

Families often receive notices they don\u2019t fully understand, she said. Others move, miss mail or struggle to determine exactly what documentation FSSA is requesting.<\/p>\n

McCafferty said navigators frequently spend as much time helping families interpret notices and untangle renewal problems as they do helping people apply for coverage in the first place.<\/p>\n

\u201cSometimes it\u2019s just helping people understand what the notice is asking them to do,\u201d she said. \u201cOnce they understand it, we can help them get through the process.\u201d<\/p>\n

For many of the families McCafferty works with, the biggest obstacle isn\u2019t whether they qualify for Medicaid, but successfully navigating the renewal process before their coverage is interrupted.<\/p>\n

\u201cIf they don\u2019t understand what they\u2019re being asked to provide, or they don\u2019t know how to respond, that\u2019s where we step in,\u201d McCafferty said. \u201cOur goal is to help them keep the coverage they\u2019re eligible for.\u201d<\/p>\n

Why coverage gets interrupted<\/p>\n

Losing Medicaid doesn\u2019t necessarily mean someone no longer qualifies for the program, said Karly Sciortino-Poulter, advocacy network director with The Arc of Indiana.<\/p>\n

Increasingly, families are losing coverage because renewals aren\u2019t completed before deadlines or because eligibility questions go unresolved, even when they ultimately remain eligible for benefits.<\/p>\n

For Hoosiers with intellectual and developmental disabilities, those interruptions can carry consequences far beyond a doctor\u2019s appointment or prescription refill. Medicaid also pays for the home- and community-based services many families depend on to keep loved ones living at home rather than in institutional settings.<\/p>\n

\u201cThe biggest thing we are seeing is that people are having their Medicaid terminated, oftentimes because Medicaid says that they sent a request for information and the person never responded \u2014 but the issue is really that the person never got the request in the first place,\u201d Sciortino-Poulter said.<\/p>\n

Coverage may eventually come back, Sciortino-Poulter said, but families often spend weeks or months living without the stability that coverage is supposed to provide.<\/p>\n

For some, medical appointments get postponed, prescriptions go unfilled, therapies are delayed, and providers go unpaid. Families, meanwhile, spend weeks or months trying to restore benefits that many are still eligible for.<\/p>\n

Researchers refer to what many Indiana families have experienced over the past three years as Medicaid \u201cchurn.\u201d The term describes people who lose coverage for procedural reasons and later reenroll after completing the state\u2019s renewal requirements.<\/p>\n

\u201cPeople are losing their Medicaid but are still eligible, and I think we\u2019re going to see a whole lot more of that,\u201d Sciortino-Poulter said. \u201cIndiana is touting the number of people who are no longer on Medicaid, but it\u2019s not because they weren\u2019t eligible \u2014 it\u2019s because of a paperwork issue. And I don\u2019t want anybody losing their health coverage because of a paperwork screw-up.\u201d<\/p>\n

\u201cFrom Medicaid\u2019s perspective, they\u2019re saying, \u2018Hey, if we get this all worked out, you know, it\u2019ll be retroactive,\u2019\u201d she continued. \u201cBut that doesn\u2019t help if you had to delay medical treatment.\u201d<\/p>\n

Susan Jo Thomas, executive director of Covering Kids & Families, emphasized that Indiana\u2019s eligibility system hasn\u2019t kept pace with how most families communicate and manage their lives. <\/p>\n

While banking, bills and everyday services have largely shifted to smartphones and email, she said Medicaid continues to rely heavily on mailed notices and an online benefits portal that many recipients rarely access.<\/p>\n

That disconnect, Thomas added, has left many eligible families without coverage \u2014 not because they no longer qualify, but because they missed even a single renewal notice or didn\u2019t realize they needed to actively renew after years of continuous pandemic-era coverage.<\/p>\n

\u201cWhat is going wrong is that the system, the eligibility system, did not keep up with society\u2019s use of technology,\u201d she said. \u201cWe have failed to get the word out that the state has a way to receive information and eligibility determination resources electronically \u2014 it\u2019s just we need to teach people how to use that.\u201d<\/p>\n

Living with unknowns<\/p>\n

In June, Indianapolis mom Renee Stout received a letter saying her adult daughter\u2019s Medicaid waiver services would end Sept. 22.<\/p>\n

She\u2019s appealed the decision, but if the denial stands, the services her daughter has relied on since 2007 could disappear.<\/p>\n

Those resources have helped Johanna develop daily living skills, spend time in the community and maintain a routine outside her family\u2019s home. Three days a week, she attends a day program where she sees friends, works with a behavioral counselor and participates in volunteer projects and other activities.<\/p>\n

Although Johanna\u2019s disabilities haven\u2019t changed, Stout said losing those services would dramatically alter her daughter\u2019s daily life.<\/p>\n

\u201cIt\u2019s a social life, for one,\u201d Stout said. \u201cShe sees friends. She\u2019s exposed to learning situations. They go out, they do volunteer projects. They go out in the community, just do fun things, do serious things. \u2026 She has some trouble getting along with people, so it\u2019s really important that she\u2019s in those settings.\u201d<\/p>\n

Johanna will always need some level of assistance, Stout said. Losing the waiver would shift even more of the caregiving onto her parents, who already manage her medications, medical appointments and around-the-clock supervision at home.<\/p>\n

\u201cRight now, our home is like an intermediate care facility,\u201d Stout said. \u201cWe\u2019re supervising her all day and all night. We manage all of her medical and medications and appointments. \u2026 We do everything that would happen in an intermediate care facility. But we\u2019re doing it for free.\u201d<\/p>\n

Holliday-Smith has that fear, too.<\/p>\n

Although Thomas\u2019 Medicaid coverage has since been restored, the effects of the interruption are still lingering.<\/p>\n

Holliday-Smith said her family is still working through retroactive billing issues from doctor\u2019s appointments that occurred while his coverage was suspended, hoping Medicaid will ultimately cover those costs.<\/p>\n

The family also delayed purchasing some of the equipment and supplies Thomas needed while they waited for his coverage to be reinstated.<\/p>\n

The mom now anticipates other Medicaid interruptions as more program changes take effect. She worries that if future interruptions drag on longer, critical doctor\u2019s appointments, medical procedures and private-duty nursing services could eventually be jeopardized.<\/p>\n

\u201cWe live stressed now, all the time, because you\u2019re either stressed about his health, just staying on top of his medications, his therapies, his doctor\u2019s appointments,\u201d Holliday-Smith said.<\/p>\n

\u201cAnd now I\u2019m constantly trying to prepare for the next issue that I\u2019m going to have with his Medicaid,\u201d she continued. \u201cPeople are like, \u2018How do you do it?\u2019 You have to. \u2026 I just don\u2019t have a choice.\u201d<\/p>\n

Stay up to date on local news with WNDU<\/a> on-air and online. Be sure to download the 16 News Now App<\/a> and follow our YouTube<\/a> page as we continue to bring you the latest news coverage.<\/p>\n

Copyright 2026 WNDU. All rights reserved.<\/p>\n","protected":false},"excerpt":{"rendered":"INDIANA (Indiana Capital Chronicle) – The notice arrived after Taylor Holliday-Smith thought she\u2019d already done everything the state…\n","protected":false},"author":3,"featured_media":982085,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":"","_share_on_mastodon":"0"},"categories":[35],"tags":[210,1141,1142,394214,394210,394211,394213,394212,67,132,68,42036],"class_list":["post-982084","post","type-post","status-publish","format-standard","has-post-thumbnail","category-health-care","tag-health","tag-health-care","tag-healthcare","tag-indiana-losing-medicaid","tag-indiana-medicaid","tag-indiana-medicaid-loss","tag-medicaid-loss","tag-mediciad-in","tag-united-states","tag-unitedstates","tag-us","tag-wndu"],"share_on_mastodon":{"url":"https:\/\/pubeurope.com\/@us\/117042354954924523","error":""},"_links":{"self":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/982084","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/users\/3"}],"replies":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/comments?post=982084"}],"version-history":[{"count":0,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/posts\/982084\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media\/982085"}],"wp:attachment":[{"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/media?parent=982084"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/categories?post=982084"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.europesays.com\/us\/wp-json\/wp\/v2\/tags?post=982084"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}