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Stories of sadness, sacrifice color health-care commission's visit

click to enlarge Ashley Steinbach has decided to stop working full-time - in order to guarantee health-care coverage for her - daughter Avalee, who has been diagnosed with cerebral - palsy. - BRIENNE BOORTZ
  • Brienne Boortz
  • Ashley Steinbach has decided to stop working full-time in order to guarantee health-care coverage for her daughter Avalee, who has been diagnosed with cerebral palsy.

By cutting her job to 20 hours a week, Ashley Steinbach will lose half her income, her health insurance and any chance of a sick day or vacation.

In exchange, the single mother will keep Medicaid coverage for her 11-month-old daughter Avalee, who needs almost daily medical care for cerebral palsy.

"The doctor said if she goes two years without therapy, she'll never walk," Steinbach says. Working part-time could mean delaying her own dreams of going to college, the 21-year-old mother explains, but it was a simple decision given her daughter's needs: "She's the first priority."

So society misses out on a willing worker; Steinbach misses a chance to advance her career; and a little girl gets, at best, a tenuous chance at medical care she needs.

However logical and compassionate Steinbach's decision, the health-care system meant to help her and other Americans is clearly neither. She told her story Friday evening as members of the state's Blue Ribbon Commission for Health Care Reform stopped in Colorado Springs to hear comments about the best ways to fix that system. About 80 residents attended; several told stories of tragedy and bizarre trades-offs such as the ones Steinbach is facing.

Kelly Stahlman, policy director for Family Voices Colorado, which assists families with children facing long-term health-care needs, helped Steinbach comfort Avalee as the new mother explained her decision, occasionally through tears.

After the meeting, Steinbach explained the frustration that led her to speak: "Something has to be done, because this doesn't work."

The commission is now evaluating five plans to fix the state's health-care system, aiming to complete a report detailing the advantages and shortfalls of each for the state Legislature by late January.

Stahlman herself has 15-year-old twins with cerebral palsy. With surgeries, wheelchairs and other needs, bills for each are into the tens of thousands a year. She answers indirectly when asked which plan would be best for families like hers and Steinbach's, faced with a lifetime of costly treatment and therapy.

"I am optimistic that we have a window for change," she says.

Tough news

When Steinbach learned she was pregnant in March 2006, her priorities changed. She'd moved here to be near her mother, planning to work as a waitress. With a child in the picture, she figured she should do "something reliable." She signed up for Medicaid, the federal program for low-income and disabled people.

In May 2006, she got a job in the scheduling department at an orthopedist's office. She started working full-time, returning after Avalee was born Nov. 5.

For the first few months, Avalee seemed fine, if a "little behind" other children, Steinbach says.

The wakeup call that something might be wrong came at 6 months, when day-care workers said the girl wasn't sitting up or rolling over like other infants her age.

Steinbach took Avalee to a doctor, who told her she was at the developmental level of a 1-month-old. More tests followed, and Avalee started getting therapy to help her swallow food and use the left side of her body, which she generally ignores.

At 8 months, tests confirmed Avalee had cerebral palsy, a brain injury caused by infection, illness or trauma during pregnancy. Doctors told Steinbach that Avalee likely stopped breathing for a period of minutes or hours sometime between 24 and 36 weeks into the pregnancy, possibly after getting wrapped in her umbilical cord. At 9 months, therapy seemed to be helping her. Doctors said she was at the level of a 5- or 6-month-old.

Now 11 months old, Avalee can roll over on her own. She doesn't throw up as much. While her daughter can't sit up yet, Steinbach says she's hopeful about more therapy.

That's where things get complicated. Avalee got one year of Medicaid since her mother was in the program at the time of her birth. The federal program now covers therapy sessions five times a week, frequent doctor visits, MRI scans, barium swallows and other tests and procedures.

To qualify for more coverage, Steinbach must make less than approximately $8,200 annually, or get a waiver. She now makes nearly three times as much.

One possible waiver has a waiting period of about two years, Steinbach says. She could put her daughter on her own health-care plan during those years, shelling out $300 a month and a $4,000 yearly deductible. But if anything were to change while waiting she gets a raise, loses her job or needs a new car she could end up having to start over. She'd also face uncertainty about what the insurance would cover.

Another waiver has an income cap of $1,100 a month. Steinbach intends to qualify for it by working half-time, giving up her own health insurance. It's a tough bargain, but Avalee faces a tough road ahead.

"They said she will require therapy the rest of her life," Steinbach says.

Fixing a broken system

Like many at the Blue Ribbon Commission's meeting in Colorado Springs, Kelly Shanahan was moved by Steinbach's story.

Shanahan, policy director for the Colorado Consumer Health Initiative, has attended a majority of the commission's meetings as members appointed by governors Bill Ritter and Bill Owens, along with state House and Senate appointees, chiseled out the five proposals now under consideration.

It's not clear which plan would best serve those with long-term needs, Shanahan says. One plan makes an effort to tackle long-term care, but proposes a $35,000 yearly cap for others, an amount that could easily be exceeded in a bout with, say, breast cancer.

The "single-payer proposal," creating a tax-funded system run by the state, turns out to be the least expensive proposal, according to the commission's statistics.

But the long-term care benefits could end up being different from those offered by Medicaid, and the proposal faces stiff opposition from insurance companies and their lobbyists.

The Colorado Consumer Health Initiative aims to support the plan that is most useful and affordable, Shanahan explains, but has not yet endorsed one. In the end, she says, it might be too much to hope that the state's first effort to fix a "broken system" will solve every problem. If a system cuts down on the state's nearly 800,000 uninsured, that will be progress, she says.

Yet for Stahlman, Steinbach and others facing the daily reality of long-term medical care, the proposals don't go far enough.

"There's not one plan that will meet the needs of my kids," Stahlman says. The danger, she suggests, is that a new system will end up being "penny-wise, pound foolish."

"Nothing about long-term care is cheap," Stahlman says. "What we know for a fact is, the earlier you catch something, the less expensive it is and the better the outcome."

lane@csindy.com

  • Stories of sadness, sacrifice color health-care commission's visit

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