New Medicaid changes could leave patients without coverage June 1

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Indiana patients are in jeopardy of losing their Medicaid coverage in just a matter of days.

Indiana is getting rid of a popular "spend down" program for those who make more than allowed. 13 Investigates shows you how some Indiana families desperate for coverage could fall between the cracks and wind up with limited or no insurance.

Christopher Ellington was the picture of health in 2005 when he was diagnosed with a rare nerve disease. The slightest touch to his face, even a kiss, caused excruciating pain. Brain surgeries and seizures followed for the former computer analyst.

Ellington is currently hospitalized due to gastroparesis. It causes aspiration to his lungs and chronic aspiration pneumonia and has led to respiratory failure twice.

"It's called the 'suicide disease.' It's one of the most painful conditions known to man. To relieve that pain, they had to decompress his brain," said Ellington's wife, Kathy.

She left her husband's hospital bedside to talk about a new pressing insurance dilemma. In just a matter of days, Chris will no longer get any Medicaid benefits.

He is among thousands across the state losing coverage when Indiana ends it's Medicaid "spend down" program June 1.

"There has got to be a different way, something that they can do for people that are like Chris who is currently in ICU on a ventilator right now and is going to need continued care," said his frustrated wife.

Right now, the Ellingtons spend nearly $5,000 out of pocket each month before Medicaid coverage kicks in. It's not ideal, but better than nothing for a family struggling to keep the basics.

"There is no way to do this. There is no way to survive for us," said Mrs. Ellington, who vowed not to give up.

For years, Indiana was just one of a dozen states nationwide with a "spend down" program.

Last year, state lawmakers set a firm income eligibility limit. The idea was to streamline services and save $26 million by shifting patients into Medicare savings programs or into programs in the affordable healthcare marketplace.

"What I'm afraid we're going to see, and I hope we don't see, are the termination of benefits," said Claire Lewis, who advocates for the elderly.

She's helping at-risk seniors in nursing homes to set up new trusts to avoid losing their coverage.

Debra Minott, Indiana's Family and Social Services Secretary, says the state is concerned and has been working for months to reduce the impact.

"I do recognize that there will be a few cases where people that use the spend down program now will no longer have access to it and it's going to be a scary time for them," said Minott. "I do think that there will be a few of those cases that just pull at your heart strings."

Cases like Chris Ellington's, a husband and father fighting for survival until he's eligible new benefits from a medicare program next February.

"For our situation, I guess it's hoping he will make it until February. I just want to get him there," his wife said.

Kathy has made several attempts to get insurance through the marketplace, but has encountered problems in the system.

FSSA is reaching out to the family to see what assistance it can offer the Ellingtons. For seniors, the Indiana Chapter of National Academy of Elder Law Attorneys are offering help for those in nursing homes in need of securing their coverage.

Policy Actions to Prevent Loss of Coverage for Current Spend Down Beneficiaries

National Academy of Elder Law Attorneys