Toddler’s health bills a strain on local family
When Katie McCleary falls into bed at night, she clutches her cellphone in her right hand in case she has to call doctors or 911.
By her left ear, McCleary keeps a baby monitor inches away, tracking her 2-year-old daughter’s heartbeat, oxygen levels and seizures.
Sometimes, when Olivia has a bad night, McCleary holds the toddler next to her in bed. “It’s so I can feel her heartbeat, so I can see that she’s breathing,” McCleary said.
Day or night, Olivia sleeps with five monitors and takes 14 medications to keep her alive. She was born at 23 weeks and six days with congenital heart failure, calcified kidneys and chronic lung disease. In April, she was diagnosed with cerebral palsy.
Since Olivia’s birth in July 2016, Katie McCleary, a Clemson University-trained business and marketing graduate, has not been able to work in advertising because her daughter’s condition requires a never-ending round of doctor’s visits and emergency trips to the hospital.
But like so many Americans who have health insurance, there are co-pays, deductibles and uncovered costs. The McClearys, Katie and her husband, Travis, have more than 1 million, Katie McCleary says. For instance, the McClearys had $10 million in medical debt in November 2016, but Katie was able to bargain with the lead hospital to reduce the debt significantly. The debt fluctuates as Katie negotiates with every medical provider.
Medical debt is a problem the couple share with nearly 25 percent of American adults under the age of 65, according to a 2017 report from the Washington, D.C.-based Urban Institute. In Indiana, that percentage was 32.7 in 2015, the fourth highest in the nation.
Indiana was one of four states and one of two in the Midwest above the 30 percent mark. Eight of the top 10 states were in the South. Hawaii at 6 percent had the lowest percentage of nonelderly adults with past due medical debt, while Mississippi had the highest at 37.4 percent.
The average medical debt for the total U.S. population is 10,000 or more, based on figures compiled by the Urban Institute.
Using in-house proprietary data provided by credit bureaus, Kyle Caswell, the study’s co-author, calculated that since 2011, between 48,000 and 64,000 Hoosiers aged 18 to 64 had a medical collection balance of more than $10,000 annually. According to an updated census, Indiana has 6.6 million people, about 4.1 million falling between the ages of 18 and 64.
The number of Hoosiers with medical debt higher than $10,000 in that age bracket dipped from 2015 to 2016, from about 1.5 percent to 1.2 percent, according to Caswell’s numbers.
With an expanded Medicaid option called Healthy Indiana Plan that rolled out in 2015, the state’s uninsured rate decreased. When the insured rate goes up, medical debt tends to go down, Caswell said.
Anita Gloyeski, a Fort Wayne bankruptcy attorney, said more people in Indiana would likely be insured, but they’re not aware of the program.
“I can’t tell you how many people I have to personally show how to sign up for HIP because they have no idea it’s out there. They’re not advertising. They don’t educate very well. I would kill to be on HIP. I’m paying 7,000 deductible.”
Membership for HIP and other Medicaid programs statewide showed an enrollment increase from about 1,415,000 in December 2016 to about 1,440,917 in December 2017, according to statistics from the Family and Social Services Administration, spokesman Jim Gavin said. The agency administers the HIP program.
State statistics show a decrease of HIP clients in Allen County between July 2017 and July 2018, according to Amanda Chappell, regional program manager for a statewide nonprofit organization, Covering Kids and Families, using figures from the Family and Social Services Administration. As of July, Allen County had 22,870 residents on HIP, 535 fewer than the year before.
A big obstacle on HIP applications is proving termination of past employment, information that relies on the employer reporting as well as the client. Another obstacle is lack of access to a computer, Chappell said. In Allen County, CKF has its headquarters at Brightpoint on East Washington Boulevard.
Gavin said the state relies on health navigators like CKF to direct people to HIP and get them enrolled. The state has spent $4.8 million on advertising since its inauguration, but currently online ads appear on social media and the FSSA website, not television or radio. People tend to go off HIP once they’re employed, a factor in any enrollment dip, as they shift to market- or employer-based insurance.
Medical debt lasts longer in Indiana than in most states, Caswell said, the debt’s statute of limitations a probable factor contributing to the higher percentage of medical debt.
Mississippi, with the highest rate of medical debt, gives collectors three years to collect debts; in Indiana, it’s 10 years. The average is between five and six years, Caswell added.
About four months ago, Olivia McCleary started walking, the result of twice-weekly physical therapy visits. Olivia also sees occupational, speech and feeding therapists.
Doctors don’t know if Olivia will ever talk. Her seizures are in the left side of the brain, where speech is controlled, McCleary says.
Before Olivia’s birth, Katie, 34, and her husband, Travis McCleary, 40, had a comfortably middle-class life : a home in the Maplecrest area, two vehicles, a 401(k), other savings and plans for family vacations.
The McClearys’ debt has been catastrophic for their livelihood. There are four older children in the McClearys’ blended family. Katie has two sons, 8 and 10, from a former marriage; Travis has a 13-year-old daughter as well as a 21-year-old son who does not live at home but relies on them for financial help.
Debt has also been accrued for Olivia’s younger sister, Everly, the sixth child in the family born nine months ago after Katie had her tubes tied so the McClearys could focus on Olivia. The pregnancy was a surprise.
Everly has problems of her own and is fed through a tube, requiring special skills to feed her. She has a congenital heart defect and severe acid reflux, McCleary said.
They have outstanding medical bills from six hospitals : Lutheran, Parkview Regional Medical Center, Riley Children’s Hospital and St. Vincent Peyton Manning Children’s Hospital in Indianapolis,
Ball Memorial Hospital in Muncie and Community Hospital in Anderson. They also owe money to Lincare Medical (a medical device and equipment supply company) and ER doctors, McCleary said.
With an out-of-network specialist’s appointment at the end of September, a friend opened a GoFundMe account to foot the expected $6,000 bill that the McClearys’ insurance, Anthem, has refused to cover.
“Anthem Blue Cross and Blue Shield is continuing to work diligently on ensuring that Olivia receives the services and support needed to best address her healthcare needs,” Anthem said in an email statement to The Journal Gazette.
Help from friends
Friends and some family have been a lifeline, Katie McCleary said.
Kelly Shank, a registered nurse, rushed to NICU when Everly was born while Katie was at the Pediatric Intensive Care Unit with Olivia. Shank’s husband, Mike, is one of the owners of Shank Brothers, a plumbing company where Travis is employed.
A newfound friend in Evansville, Prachi Deep Shirsolkar, works as an Enfamil scientist at Mead-Johnson and sends special formula and financial help. Dana Culver, another friend through Pay It Forward Fort Wayne, has raised gas money for the medical trips to Indianapolis and Atlanta.
“I think Katie is a wonderful mother because she is going through so many things, (yet) she still gives strength to so many people. I know she is super stressed out, but what she gives back is not her tensions, but she has a lot of positivity in her that she gives out,” Shirsolkar said.
As a result of the worry, the constant care her two daughters require, and stress from financial issues, Katie McCleary said she was diagnosed with PTSD about two years ago and sees a counselor at the Bowen Center every other week.
“There’s not enough hours in the day to be a good mom to all of my children because Olivia requires so much attention and that makes you feel horrible as a mother,” McCleary said.
Then there are questions from her older brothers. “Is Olivia going to die or is she going to be able to live? Are people going to pick on Olivia?” they ask.
Sometimes the tears flow, McCleary said. Her husband goes to the garage to let out his emotions.
“I work and work hard to provide for my family,” Travis McCleary wrote in a Facebook message. “And because of Olivia I have to pick up other jobs like working on cars, fixing houses. It’s not fair because it takes away from my time with Olivia and the other kids. It puts more on Katie. I work hard, pay taxes and they want to take insurance away from Olivia possibly. How am I supposed to take care of her then?”
Katie McCleary said the couple wants people to consider their own lives.
“We want people to realize you don’t appreciate what you have until your life turns upside down and then you learn how to appreciate what you have in a different way,” Katie said. “I never thought my life would be what it is today, but it’s good in a lot of ways and it sucks in a lot of ways.
“I wouldn’t trade Olivia for anything.”