Posted on 12/08/2002 11:25:50 AM PST by FourPeas
HOLLAND -- Black hair frames Jesse Barrera's round face, and long eyelashes veil brown eyes as he moves his head from side to side. His hands curl up at his chest like a newborn baby.
"Are you the best boy? Yes, you are. You're my boy," Lilly Barrera coos to her son as she bends next to his oversized recliner and presses gentle kisses onto his fists.
At 23, Jesse has lived nearly five times longer than his doctors predicted when they diagnosed him shortly after birth with severe cerebral palsy, a seizure disorder, and lung and heart problems.
Jesse's current doctor credits her patient's longevity to Barrera's loving around-the-clock care.
But now the doctor says Jesse needs more help than Barrera can give, and Barrera believes her son's health is jeopardized by a bureaucratic decision that would put him in a medical facility 100 miles away, separated from his mother, frightened by unfamiliar surroundings and exposed to potentially life-threatening infections.
Barerra would like Medicaid funding to provide nursing help for Jesse in her home. To get that, she would need a waiver of rules that limit such Medicaid funding to institutional care. But Ottawa County Community Mental Health officials say they don't have any waivers available, and suggest Jesse go to the state nursing facility in Mount Pleasant.
Faced with a growing struggle to provide for her son in her home, Barrera has gained an ally in the form of Mark Cody, a legal advocate in Lansing who hopes to force the state to change the way it allocates those Medicaid waivers. He argues that while all of Ottawa's waivers are allocated, waivers go unused in other counties and could be shifted to counties like Ottawa that need more.
Last month a judge rejected their first appeal, but another is in the works. In the meantime, Barrera continues the 'round-the-clock responsibility she has had for all of Jesse's 23 years.
Barrera, a 55-year-old divorced mother of three, lives with her son and a teen-age daughter in a small, rented house on the west side of Holland. There, the former factory worker has provided top-quality care with help from her 29-year-old daughter, a small circle of church volunteers and limited assistance from nurses funded with public health dollars.
Barrera does nearly everything for Jesse, from suctioning the fluids out of his lungs to pureeing the food that goes in his feeding tube. At night, she keeps watch in the recliner next to her son's bed, lightly dozing as she listens for the beeping of machines monitoring Jesse's breathing.
Some nights Jesse doesn't sleep, and neither does she.
But the burden is taking its toll on Barrera. Her shoulder and back continually ache from lifting Jesse's 90 pounds. Health insurance for her is out of reach -- she can't leave Jesse's side long enough for even part-time employment. Barrera lives on just more than $1,400 a month she gets through Family Independence Agency for care for her son. She also gets funding for six hours a week of in-home nursing care through Ottawa County Community Mental Health.
Last spring, Jesse's doctor ordered up to 18 hours a day of in-home nursing care for Jesse, so his mother would have time for work and sleep.
It's a prescription Community Mental Health rejected, saying it could not fund the in-home care, and instead encouraged her to place Jesse in a state nursing facility in Mount Pleasant.
However, moving Jesse out of his home into a setting with numerous people around would be a death sentence, said Dr. Christine Meyer, a family practice physician with Visiting Physicians.
"He would be in real serious danger of getting a terminal respiratory infection," said Meyer, who performs Jesse's monthly, in-home checkups. Jesse leaves his house only three or four times a year to see a specialist.
So with the help of attorney Cody, the Barreras are challenging the county's denial of the Habilitation Support waiver, which would let Medicaid funds for institutional care be used instead in the family home.
The root of the issue is the "managed care" system the state instituted in 1998. Before that, waivers were funded directly by the state. Beginning in 1998, funding to counties was based on a complex formula that includes the number of waivers in place at the time, the number of residents enrolled in Medicaid and the level of services provided in the past.
And since 1998, the state does not grant more money to a county that grants more waivers. So, like most counties, Ottawa has not increased its number of waivers since 1998, although when an existing waiver becomes available, it can be given to other eligible patients.
"We get the same amount of money whether we have no waivers or a hundred waivers," said Pam Pekelder, business manager for Ottawa Community Mental Health.
That is the system Cody is challenging. He argues that waivers go unused in other counties, and that the state should shift funding to counties like Ottawa where there is a need.
Ottawa has 82 waivers in use, with some costing the county as much as a $100,000 a year.
Kent County Community Mental Health has about 160 waivers in use. When slots become available, they are filled. The agency also recently applied and received a few additional waivers from the state, said Paul Ippel, the agency's new executive director. But no additional money came with the waivers.
"In a way we are helping out the state because they have extra waivers to report to the federal government," Ippel said. But Kent still must fund the waivers from its existing budget.
The last resort
Placement in an institution usually is the last resort, said Gerard Cyranowski, director of Ottawa County Community Mental Health, who cited patient confidentiality in declining to discuss the specifics of the Jesse's case.
"We try to provide the least restrictive environment but it has to be balanced with costs and other options available," he said.
"They say they are there to help Jesse stay in his home but they aren't," Barrera said. "I don't believe they care about the person, they just care about how much is coming out of their pocket."
Cody, lead attorney with the Michigan Protection &Advocacy Service, Inc., a private nonprofit corporation that fights for people with disabilities, believes a successful appeal could set precedent for people in similar situations, moving unused waivers to counties where there is more need.
Last month, an administrative law judge denied Barrera's appeal, ruling the state can't force the county to take on the additional costs. Cody plans to appeal the judge's decision. He also has the option of taking the case to circuit court.
"We think that is flawed reasoning," said Cody, who contends the waivers fall under the jurisdiction of the state, and their availability to families like the Barreras should not be subject to whether the local community mental health agency wants to apply for them.
There have been cases where counties have voluntarily allowed waivers to be transferred to another county, said Geralyn Lasher, spokeswoman for the Michigan Department of Community Mental Health.
"The important thing to remember is there is no funding that follows the slots," Lasher said.
Cody claims that shouldn't be the case either. He said the state is ultimately responsible for funding the waivers where needed, and cannot restrict how many slots go to one county or another.
Unfortunately, Lasher said, the state doesn't have the money to meet every request for funding. "We have to live within the reality of the budget and how we can best serve as many people as we can with the dollars we have."
But Cody argues it would make financial sense for the state to pay for in-home care. In Barrera's case, institutional care would be about $204,400 a year, with Ottawa County Community Mental Health required to foot $89,000 of that bill out of its budget. If the full 18 hours a day of relief were provided Barrera at home, that option would cost an estimated $164,000. Without money from the state, Ottawa County would have to fund that out of its existing budget.
Help from friends
Advocates for the disabled say the dispute gets to the heart of how government views people with needs.
"They see him as a cost and we see him as a person," said Aimee Sterk, an advocate with the Holland-based Lakeshore Center for Independent Living, a nonprofit organization that advocates for the disabled.
"I know that Lilly has a right to a life and Jesse has a right to live safely," Sterk said.
As Cody continues to appeal Community Mental Health's decision, Sterk is pursuing a compromise for 80 hours a week instead of 112 hours, which would not provide any coverage on the weekends.
Sterk began helping Barrera last year after Jan Jonker contacted the center on her behalf. Barrera had used up her year's allotment of county-funded respite nursing care during four weeks Jesse battled a lingering respiratory infection.
Jonker, a former nurse, could identify with Barrera's plight. Her younger brother has severe Down syndrome, and she became responsible for his care after her father died 18 years ago.
"Most people don't understand what life is like for a family of the disabled. It's 24 hours a day, 365 days a year. It's there all the time," Jonker said.
Jonker said she is troubled that Barrera can't be as involved a mother to her daughters, Liz Culver and Michelle, 13. Barrera can't leave the house long enough to attend Michelle's school games and concerts, although Culver tries to step in for her mother when she can. Michelle sometimes communicates by leaving notes on the kitchen table while her mother is busy caring for Jesse.
For years, Culver helped her mother with Jesse's care until doctors discovered a tumor in her hip two years ago. Since surgery, she hasn't been able to do any heavy lifting. Until two years ago, with Culver's help, Barrera was able to work a third-shift production job at Prince Corp..
Until about 10 years ago, Jesse left the house several times a week to attend Ottawa Area Center, an educational facility for impaired persons. But Jesse paid the price with his health. He was constantly battling respiratory infections, requiring uncomfortable stays in the hospital. Eventually Barrera and the doctors decided to keep Jesse home, and the change dramatically cut down the infections.
His doctor is concerned a nursing facility could expose Jesse to many different people and the germs they carry.
Beyond that, Barrera worries about his psychological health.
Jesse has the mobility of a 2-month-old but his mother knows her son's awareness is much more developed than that. If his surroundings don't feel right, he becomes agitated. Like a baby, his body tenses up, and he screams.
Hospitals and unfamiliar faces can upset him for days.
Barrera gets a sick feeling in her stomach wondering what his reaction would be in a place full of strangers, such as the nursing home.
"I know he wouldn't be able to handle it, and he wouldn't be able to say anything," Barrera said.
She's also concerned because of callous treatment she said Jesse has endured over the years. One specialist yanked Jesse's feeding tube from his abdomen, sending him into a frenzy of pain.
"I think some people in the medical field think he doesn't feel," Barrera said.
For the most part, Barrera feels she has been able to protect Jesse from those who don't see him as a person. If Jesse was placed in the state's Mount Pleasant facility, she wouldn't have that control.
She prays she doesn't get to the point where she can't take care of her only son. Barrera has no regrets about the sacrifices she has made to provide the best care possible for her son.
"Jesse is a special blessing," Barrera said. "I wouldn't trade him for 10 normal kids."
Personally, I think that there should be family, friends, and volunteers to help with Jesse so that he could stay at home. But being trapped at home as a care-giver for 23 years, makes it hard to stay in touch with the community.
Fixng this should be a priority for the 108th Congress.
Fixng this should be a priority for the 108th Congress.
Their economy has been hard-hit. Kraft bought the Lifesavers plant and moved production to Canada (sugar tariffs). That laid off 600. Furniture makers have also laid off hundreds. The tourism industry is seasonal in nature and fickle.
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