The Debate Over Medically Fragile Children

Gov. Pat Quinn signed legislation last month that makes sweeping cuts to the state’s Medicaid program. He said the $1.6 billion reduction was necessary to save Medicaid from collapse. Among the many residents impacted by the cuts are the medically fragile technology dependent (MFTD) children. They are kids with severe disabilities that need constant care. Many of them live at home with their parents, but budget changes could force the children to be institutionalized.

Kira and Christian, Christmas 2011; photo courtesy of Mammoser familyCindy Mammoser is a mother of twins in the city, one of which is a MFTD child. While the twins will be celebrating their 9th birthday in three weeks, Cindy’s mind is preoccupied with the question: “Will my daughter have to spend her childhood in a hospital?”

“She gets depressed after being there for a while, there’s not much to do, and she’s kept in isolation,” said Cindy.

Her daughter Kira has been in and out of the hospital since the age of 5, with stays ranging from a couple of days to three months. Just after entering kindergarten, Kira was diagnosed with an extremely rare condition that affects just over 70 people worldwide. Known as Rapid-onset Obesity with Hypothalamic dysfunction, Hypoventilation and Autonomic Dysregulation (ROHHAD Syndrome), the main function it affects is breathing, forcing little Kira to have a trach and ventilator at all times.

“There are several other components to this disorder, but the biggest for her is that her brain doesn’t recognize a lack of oxygen or carbon dioxide, or a build-up of carbon dioxide,” said Cindy.

The most frightening thing about this condition is the lack of warning signs, she says.

“She can be coloring or eating, and suddenly not be breathing, and you wouldn’t know it until she falls over,” she said. “I’ve performed CPR at least half a dozen times on my child just to get her breathing again.”

Anyone looking after Kira has to be extremely attentive. One time, it was Kira’s twin brother Christian that came to her rescue.

“She was on the sofa and came off the ventilator, and she stopped breathing. He ran upstairs right away to get me and then called 911,” Cindy said.

Like many of the other 500 children that the MFTD waiver covers, Kira requires constant care and attention.

“With the waiver program, we’re provided with nursing care overnight, which is the most crucial to us, because she has to have someone there watching her so if she disconnects (from her ventilator) she can be reconnected immediately,” Cindy said.

Make-A-Wish Trip, October 2010; photo courtesy of Mammoser familyRight now, Kira receives 90 hours of care from nurses a week, which includes time spent with nurses at school -- 42.5 hours a week starting in the Fall due to the extended school day.

Three out of seven nights a week, the Mammosers don’t have a nighttime nurse, so Cindy assumes this role.

“I’m sleeping in her room, and I’ll stay awake until 1:00 or 2:00 am and then get a few hours of sleep, because if I didn’t get those few hours, I couldn’t function during the day at all,” she says. “Nurses at night save my sanity and my health, and give us a chance to at least rest.”

However, the SMART act includes a provision that would create an income cap for the MFTD waiver. This income cap would be 500 percent of the federal poverty line (FPL), or $95,450 for a family of three. Without the MFTD program, the average family would have to pay $188,210 out-of-pocket in order to keep their child at home, which for many doesn’t quite seem to add up.

“We can’t figure out how they do math, it doesn’t quite compute,” said Cindy.

She says she and her husband are at the point where they’re counting pennies because they’re so close to the income cap line. If they are over, they won’t qualify for the program, which means no help from nighttime nurses.

“If we had to pay for night nursing out of our own pocket, it would be more than what we make in a year,” she said.

Because Kira requires constant care by someone who is trained and comfortable with working with a trach and ventilator, she would have to be hospitalized along with many other children.

“Our argument is that if they cut this, she’s going to end up being in a hospital, along with many other children, and the state would be paying for it,” Cindy said.

She and her husband work hard to take care of their family, so it’s frustrating for them to think they might be turned away from the program because they “make too much.”

“We don’t have a fancy house or cars, and we don’t take vacations. We can’t," said Cindy. "We do what we can around the city with the kids, but the price of everything is going up.”

Mammoser family at the Starlight Gala, May 2010; photo courtesy of Mammoser familyCindy, along with many other parents feel frustrated by the lack of answers they’ve received from the Illinois Department of Healthcare and Family Services about where the fate of their children lies.

“I want her to be a kid,” said Cindy. “If we lose the waiver and can’t afford night nursing, and she’s living in the hospital, I don’t see how she could thrive and advance. It doesn’t make sense that a straight A, honor roll student should be living in the hospital.”

Cindy hopes the state will look at individual families and cases, instead of making sweeping cuts that are going to cause many children to be institutionalized and separated from their families.

Here is her plea to the community:

The legislature is considering cutting the Medically Fragile and Technology Dependent Waiver program. It's a critical program that provides us with specialty nursing care, which allows me to keep my daughter living at home instead of life in an ICU or institution.

As a mother you care for your children, doing all the things a parent is expected to do for their 8-year-old child. Now, imagine after your daily routine, you spend the night making sure she's still breathing, checking her machines, monitoring her temperature, giving her oxygen, suctioning her trach, adjusting her ventilator, and trying to get a little rest too. This makes for a long night, and even longer days.

The MFTD waiver keeps our family together and allows me to spend a few hours a day with Kira's twin brother- away from machines and medical equipment. Because of the program, we have time to teach them things, help with homework, and most importantly spend time together.

We absolutely need this waiver to keep our daughter at home, with us, where she belongs. She is a bright, inquisitive, little girl who has a desire to learn and create. If we were to lose the waiver and the nursing hours it provides us, there's no guarantee that we'd be able to keep her at home with us. So instead of attending regular school with her peers, growing up with her family, and being a regular 8 year old kid (who just happens to have a tracheotomy), she would have to live in a hospital at a much higher cost to the state.

I am begging our lawmakers not to forget about families like mine, our well-being depends on it.

Cindy Mammoser

Chicago

Eddie Arruza has the story of another family with an ill child who will also be affected by the upcoming budget cuts on Chicago Tonight at 7:00 pm.

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