by: Steve Stout
A Streator family, frustrated by the state’s constantly changing Medicaid rules and regulations, worries about the future well-being of their medically fragile son and other children like him as they fight the bureaucracy for help to keep his costly prescriptions within the family’s reach.
Gary and Christine Chalkey’s son, Jacob, 18, a junior at Streator Township High School, knows he is different from other teenagers. Since he was a baby, Jacob has suffered developmental delays and life-threatening seizures.
“Jacob has such an unusually rare condition that doctors really don’t have a name for it yet,” Christine Chalkey told The Times. “It is very rare — only 17 children in the world suffer from it, and Jacob is now the oldest survivor.”
She explained the family has been told the boy’s brain is very malformed, making it difficult for one section of his mind to communicate properly with another. Although Jacob’s condition is congenital, he has amazed doctors and professionals with his continued progress.
“This was a baby who doctors predicted may never walk or talk, or live past age 2. Jacob now sings in the school choir, participates in regular track and attends school social functions.
“He even had a solo in the high school choir last year, and this year he tried out and made Advance Choir with his director saying he nailed his audition. He is truly a miracle — a miracle in progress.”
However, on not-so-rare occasions, Chalkey admits her son still has massive seizures, some of which, she has been told, could be life-threatening or cause permanent damage, affecting his ability to speak, walk or function.
Neurologists have experimented and tried several drugs to manage seizures, which can occur several times per day. But because of Jacob’s very sensitive neurological system, only one name-brand medicine has become reliable and vital to his everyday life.
But it is extremely expensive.
“If ordered and purchased at a local drug store, Jacob’s monthly medication bills would now run more than $1,300 per month,” Chalkey said. “At first, my husband’s work insurance helped cover some of the cost, but coverage for brand-name meds under that policy stopped two years ago.”
The family then was able to get some financial help from the state because Jacob qualified for a federal waiver assistance program that helps fund the Medicaid program. States that receive federal funding for Medicaid are mandated to provide medical assistance to children classified as medically fragile or technologically dependent.
The financial assistance the Chalkeys were getting came to an abrupt end last year when the Illinois Legislature voted to cut $1.6 billion from the Medicaid program.
Without any written or verbal notice, the funding for Jacob’s medicine was eliminated, leaving the Chalkeys scrambling for a solution.
Chalkey found little help or sympathy, so she reached out to state Rep. Frank Mautino, D-Spring Valley, and Sen. Sue Rezin, R-Morris.
After several conference calls with Mautino, Rezin, state Medicaid officials and their insurance company, Mautino facilitated an application for financial assistance through the drug manufacturer’s patient assistance program.
After many months of communication and piles of paperwork, the pharmaceutical company agreed to provide Jacob the name-brand medicine. The family must reapply every six months.
Chalkey has spent endless hours navigating state Medicaid regulations. She discovered Gov. Rod Blagojevich expanded the state’s Medicaid program, without legislative approval, to include children who had no legal residency status.
She noted a Chicago Tribune investigation found at least 75 percent of the recipients of Medicaid assistance from Illinois’ All Kids Care program are children of undocumented immigrants.
“Funding their care directs the program’s resources away from people like my son and thousands of other legal citizens of the state.
“It is so disheartening knowing legislators cut services for the 1,000 medically fragile, disabled children in Illinois who are citizens but did not cut out one of the over 75,000 men, women and children in this same program who are not citizens.”
The Chalkeys said they worry about all children, especially the medically fragile and most vulnerable.
“We know Illinois is in a fiscal crisis,” Chalkey said. “But our state needs to seriously rethink who is eligible for Medicaid assistance and who is not, then purge the system of fraud and those who are abusing Medicaid. Legislators should never make cuts to the most vulnerable, like medically fragile children. And, taxpayers should be outraged that they did.”
Since 2000, Illinois Medicaid participants have doubled from 1.4 million people to nearly 2.8 million — more than 20 percent of the total population. Next year, that number is set to increase as federal health care legislation takes effect.
Last July, in anticipation of Medicaid expansion under Obamacare, Illinois began an organized effort to remove ineligible adults and children from the state’s Medicaid rolls. Lawmakers were hopeful the comprehensive audit would help them find $1.6 billion in enrollment cuts to salvage the program and sustain coverage for residents who need it the most — children and the elderly.
Following a review by the first independent audit of Illinois Medicaid in January, of the first 20,500 recipients screened by outside auditors, more than two-thirds — 13,709 — were suggested to be considered ineligible to receive their current benefits. Some flagged ineligible were found to make too much money to qualify; others were revealed no longer to live in the state.
Chalkey concluded that until real reforms are enacted, Medicaid patients will continue to suffer from claim refusals, low reimbursement rates and long payment delay.
“Until such time, the truly deserving of Medicaid, the disabled and poor citizens of Illinois, will continue to be disenfranchised and left behind by the very governmental system created and set in place to help them,” she said.
That is why the Chalkeys are considering joining a federal class action lawsuit against the state on behalf of about 1,000 medically fragile children seeking to prevent the state from eliminating or reducing their existing Medicaid benefits.