Medically Fragile Children’s Waiver

Tony

Our most fragile
  Parents fear cutoff of children’s home nursing services
 
  Tribune photos by Heather Charles
  Photos by Heather Charles Stories by Deborah L. Shelton  dshelton@tribune.com   Twitter @deborahlshelton
 
     Hundreds of Illinois parents whose medically fragile and technology-dependent children receive skilled nursing services at home through a state-run program are anxiously waiting to find out if their sons and daughters will continue to qualify. The parents say proposed changes to the program would make their children ineligible, forcing the youngsters out of their homes and into hospitals or other facilities. Some of them have vowed to fight and filed a lawsuit in July. The changes have been pushed back twice, putting the families in an agonizing limbo. “I can’t put into words how stressed and worried we are,” one mother said. “Anyone who has children and loves them can understand the heartbreak of this.”
   — By Deborah L. Shelton, Tribune reporter
 
   Meet the caregivers: Tribune photographer Heather Charles spent several months with four Chicago-area families, documenting their daily lives and challenges as they lived under a cloud of uncertainty.     ‘This isn’t a luxury’
 
   MICHELLE KISH, 15, BARTLETT
 
   Michelle Kish has much to look forward to: school. Christmas. Her sweet 16 birthday party in March.
 
   Even so, despite her mother’s efforts to shield her daughter from worries, Michelle sometimes asks if she will have to move into a hospital. “I tell her we are going to pray about it and work it out as a family,” Mary Kish said.
 
   Michelle was born with a rare genetic disorder, Hallermann-Streiff syndrome, a cranio-facial condition that also can cause heart, stomach and lung problems. She is legally blind. She is tube-fed, and she needs a ventilator to breathe up to 12 hours a day — 24 hours if her health takes a bad turn. She has a form of dwarfism and uses a walking cane.
 
   In every other way, she’s a typical teenager. She’s chatty, develops crushes, and likes to socialize and decorate her room.
 
   The Bartlett family’s income normally would be too high to qualify for Medicaid services, but a waiver issued under the state’s program for medically fragile children allows Michelle to receive in-home nursing care.
 
   If Illinois changes the program’s income requirements enough to disqualify them, the Kishes would not be able to afford those services, Mary Kish said. In-home nursing care costs about $200,000 a year, she estimated.
 
   “Michelle requires 24/7 (care),” she said. “There’s a reason why she’s had nursing care since she was born. This isn’t a luxury.”
 
   Her husband, Brad, a biomedical engineer, has to travel about 70 percent of the time but dives right in to help when he comes home. If a nurse isn’t available, the couple take turns staying up all night.
 
   If they lose coverage, the Kishes say they have three options: try to take care of Michelle on their own, which Mary said probably would last about a week; permanently hospitalize her; or get divorced so they can qualify for services through Medicaid.
 
   “It’ll kill me,” said Mary Kish. “But I’m a brave person, and I’ll somehow get through it. … I would never, ever, ever abandon my children, either one of them.”  
   Heavy load for single mom
 
   T.J. BYARS, 7, LANSING
 
   T.J. Byars, 7, requires round-the-clock care.
 
   He is developmentally delayed and lives with multiple medical problems, including epilepsy, cerebral palsy and juvenile arthritis. After having aspiration pneumonia last year, he got a tracheotomy that keeps his airway open.
 
   But with help, he has been able to live at home in south suburban Lansing — exactly where his mother, Octavia, wants him to be.
 
   A typical day in the Byars’ home starts with 5 a.m. breathing treatments for T.J. that last about 45 minutes. He gets a bath and an hour of television, and on some days his mother takes him out for a walk in his wheelchair. He receives speech and other therapy and home-schooling. At night, he’ll play with his sister Dametria Gist, 17, who helps with his care.
   “I’m constantly moving, the suctioning and all those things,” Byars said. “I never would have thought I’d be able to handle something like this. I couldn’t even have imagined doing this, (but) for your child, you build strength.”
 
   After T.J. received the tracheotomy, he qualified as “medically fragile” under the state’s waiver program. He is eligible for 77 paid hours of nursing care a week, Byars said.
 
   Byars’ fear is that her son will lose those services if the state changes the way it determines medical necessity and level of care. She said she might be forced to place T.J. in a hospital to be sure of his safety.
 
   Days are long and hard for Byars, a single mother, but the state’s program allows her time to sleep and work part time as a dispatcher for a transportation company.
   During days or nights when she doesn’t have a nurse, she handles T.J.’s care on her own.
 
   “I don’t know what I would do if the waiver was taken away because I don’t know how I would be able to stay awake 24/7 to take care of him,” she said. “There’s just no way that can possibly be done.”      When insurance falls short
 
   CELESTIA “LETTY” YOUNG, 4, CHICAGO
 
   Shortly after Myra Young gave birth to her first child, William, she bundled him up and took him to work with her. She planned to do the same when her daughter was born.
   But Celestia “Letty” Young was born with a rare muscle disorder called congenital fiber type disproportion, which requires intensive medical care. Now 4, she is ventilator-dependent, tube-fed and unable to walk.
 
   Young said Blue Cross-Blue Shield of Illinois covers most of Letty’s care but not private-duty nursing at home, which she said costs about $200,000 a year. That’s where the state’s waiver program comes in.
 
   “People might think we are lazy, irresponsible people who are trying to feed off the state,” Young said. “That’s not true; I have primary insurance. All we are asking for is for what my insurance doesn’t cover.”
 
   The Youngs would still qualify for services under the program’s new income standards, but they say they can’t afford the co-pays being proposed on top of other medical costs. They also are concerned about a state proposal to replace nurses with health care workers with less training, who they believe would provide lower quality care.
 
   They estimate they already spend more than $10,000 annually in co-pays, deductibles and other out-of-pocket costs. Young also had to cut back her hours as a horse trainer and riding instructor to tend to her daughter.
 
   “I love my children more than anything,” she said. “I will do whatever I can do for them.”
 
   Young has been active in trying to prevent the changes from taking effect. She took Letty to a public hearing so the head of the Illinois Department of Healthcare and Family Services could see a child up close who could be affected. At one point, she burst into tears as she spoke to state officials.
 
   “I can’t put into words how stressed and worried we are,” she said. “Anyone who has children and loves them can understand the heartbreak of this.”  
   A temporary safety net
 
   QUINCY GOLDBERG, 18 MONTHS, CHICAGO
 
   Unlike some families whose children live with lifelong chronic medical problems and rely on the waiver program for years, Michael Goldberg’s 18-month-old son, Quincy, needs only temporary help.
 
   Quincy needed a ventilator after being born prematurely at 24 weeks with chronic lung disease, but he is being slowly weaned off and by the end of November was breathing on his own for nine hours a day.
 
   His parents, Michael and Mayumi, don’t think their son would have gotten this far if he hadn’t been able to live at home, where he gets his nursing care through the state program. He is slightly delayed developmentally but is rapidly catching up.
 
   “The biggest thing is, he’s starting to vocalize,” Michael Goldberg said. “He can’t speak because of the trach, but we can hear him whispering things like mama and dada. He mimics us in both English and Japanese.”
 
   Mayumi gave up her job as a nail technician to help take care of Quincy. Michael is an investment analyst whose income would make the family ineligible for in-home services under the new rules.
 
   If the changes take effect before Quincy is well enough to live without the services, the couple is considering a divorce. Michael would move out of the home so Quincy could qualify for Medicaid on his mother’s income.
 
   “We can’t care for Quincy safely without help,” Michael Goldberg said.
 
   Even after Quincy is fully recovered, the Goldbergs said they won’t forget about the families who need long-term services, and they are actively advocating for the waiver program to continue unchanged.
 
   “The state has the ability to improve the quality of life of these families,” Michael Goldberg said.
 
Caring for medically fragile children
    
 More than 1,000 medically fragile, technology-dependent children in Illinois currently receive in-home skilled nursing services paid for by Medicaid. About half are in a waiver program for families whose income exceeds Medicaid’s usual eligibility requirements or who do not qualify for other reasons.
 
   What’s changing? State officials have proposed changing the program’s income requirements and definition of “guaranteed care,” as well as imposing co-pays.
 
   Why? The changes were part of legislation aimed at closing the state’s budget holes.
   Who’s affected? Most of the children need ventilators, feeding tubes or other medical interventions to survive. Parents say they cannot afford the cost of in-home nursing care, which averages $11,000 to $16,000 a month.
 
   When will it happen? The Illinois Department of Healthcare and Family Services has sent the proposed changes to the federal Centers for Medicare & Medicaid Services for approval. The state had planned to implement the changes Sept. 1 but sought two extensions from Medicaid officials. Illinois recently asked for an April 30 deadline.
 
   State officials say: “We are aware of the families’ concerns, but due to the fact we have pending litigation, we cannot comment in detail. The department has indicated that we are willing to work with the Legislature and federal authorities in order to implement a modified program that meets the needs of both the families and the state.”

Tony Paulauski
Executive Director
The Arc of Illinois
20901 S. LaGrange Rd. Suite 209
Frankfort, IL 60423
815-464-1832 (OFFICE)
815-464-1832 (CELL)
Tony@www.thearcofil.org