The is from the Montgomery County News April 9, 2002

Linda's Story . . . . . . Is Also Nikki's, And FAYCO's, And The Governor's Budget

by Richard Slepicka

LITCHFIELD - This started out to be Linda's story. A story about a choice Linda may have to make. Linda Billiter lives in Litchfield and, as she has for 33 years, cares for her daughter, Nikki. So, because Nikki is so important to Linda's life and because the choice will involve Nikki, this also is Nikki's story. Nikki is disabled. She has cerebral palsy. A few years ago Linda was able to enroll Nikki in the developmental training program at FAYCO. This program,  headquartered in Vandalia, but with a facility in Schram City,  provides opportunities for disabled adults. Since the choice Linda  must make involves Nikki being in the program at FAYCO, it also has to  be a story about FAYCO. And, finally, since Linda will be forced to  make a choice that will in some  way disrupt her life and Nikki's life, because of a ruling by an  Illinois state agency, this also is a story about bureaucracy. Nikki's  story Nikki Billiter was born January 15, 1969, the first child of  Richard and Linda Billiter.  About six months later, Linda noticed Nikki had unusual eye movements so she  took her to a pediatrician.  There was no immediate diagnosis and doctors who examined Nikki over  the next several months weren't sure of the problem. Then, when Nikki  was 16 months old, the Billiters were told their daughter had cerebral  palsy. Linda thinks now that something probably happened during  delivery. Linda was in labor 26 hours before Nikki was born. That is  past and can't be changed. Linda and Richard made the best of it.  Linda took care of Nikki at home and  when Nikki was old enough, she went to school. State law requires all  children be educated. Nikki was enrolled in special education classes  and until she was 21, she went to school, at times transferred to  Butler and Hillsboro. She finished high school at Litchfield. For the  next six years Nikki stayed at home. Linda knew of developmental  training programs like that offered by FAYCO, but for a long time  there were  no openings for her daughter.  Finally about six years ago, Nikki became a FAYCO client. She is  picked up at 9 a.m. Monday through Friday and taken to the workshop in  Schram City. There she joins several other men and women who enjoy  being with other people, who enjoy getting out of their homes for a  few hours. Nikki is too disabled to work in the workshop where many  clients do packaging or make pens that FAYCO sells. Nikki goes to  class, learning skills that will help her get along in life. She and  the others are the focus of close attention and great love by the  FAYCO staff. She returns home about 3:30 p.m.  Much of Nikki's time at home is spent listening to music or watching videos.  She sometimes goes places with her father. Linda and Richard divorced  when Nikki was in high school. Linda was 16 when they married and  Richard, 17. They grew apart over time. But Richard is still very much  involved in his daugher's life. Nikki went to  Easter Sunday services with him.  Linda and Richard are still good friends. She doesn't make any  decision regarding Nikki without him being involved in the discussion.  Linda's choice Linda stays at home to care for Nikki. The two get by  on about $1300 a month. Nikki gets $540 a month from Social Security.  Linda is a "homemaker"  providing services for Nikki through the Department of Rehabilitation  Services (DORS). She receives $7 an hour for a maximum of 55 hours  every two  weeks, about $770 a month.  The two also get some help from Richard and other family and friends.  When Gov. George Ryan presented his budget recently, there were  across-the-board cuts made and departments were told to cut services.  One ruling coming out of the Department of Human Services is that all  individuals receiving Developmen-tal Training (DT) services, such as  Nikki receives at FAYCO, must be eligible for Medicaid. Because of the  new rules, Linda will be forced to make a choice. The homemaker  services from DORS and the FAYCO program are both considered "waiver"  programs, and state law says that a person can't receive two waiver  services. Linda must either give up her $770 a month or Nikki must  give up going to FAYCO. The choice Linda has to make is the same that  parents of six other FAYCO clients in the same DT program will have to  make. These parents, like Linda, have kept their children at home, and  cared for them there. The FAYCO program provides these individuals an  opportunity to get out of the home, an opportunity for socialization,  for learning. And the program gives the parents a few hours to go  shopping or take care of  other personal matters.  Linda wants her daughter at home.  "We do pretty well. She's happy here and I want her to live with me.  They (the state) should be happy we want to have her at home, in her  home," Linda  says.  This past week Linda received a letter from Bob Lindberg, executive director  at FAYCO, that informed her she may be forced to choose between losing  her "homemaker" money, putting Nikki in a home or allowing Nikki to go  to the FAYCO DT program. Nikki could qualify for a spot in a group  home, a Community Integrated Living Arrangement (CILA) and then she  could continue to go to the FAYCO program.  Linda really has a problem understanding this, as does Lindberg.  If Linda puts Nikki in a CILA, the state would pay a minimum of $35,000 a  year to keep her there, depending on the services she requires, and Nikki  would still receive her SSI income. It could total well over $50,000 a year.  By allowing Nikki to stay at home, paying Linda, or some other  "homemaker" $10,100 a year and paying FAYCO $9,400 for the  developmental training day sessions, the state is paying a little over  half of the minimum stay in a CILA. But the real reason is that the  state is trying to shift more of the cost of  Nikki's care to the federal government. In the process, however, it  forces Linda into a situation which she considers intolerable. "The  FAYCO program has been a blessing. We live in a small community that  doesn't offer anything for Nikki. I don't know what I would do if the  program wasn't there. It's her life. She loves it there," Linda says.  Just before the bus picks up Nikki, it picks up a man who is a quadriplegic.  "He, too, is thrilled to be doing something," Linda said.  If Nikki is forced out of the program, Linda says it will be a "waste  of a life. She's a perfect candidate for a program like this, to be  around other  people. I think she'll waste away if she can't go."  While Nikki benefits from the program, so do the people she is with  every day, both FAYCO staff and other clients. Nikki is a wonderful  young woman with a sparkling personality. Her smile is  infectious and she can light up any room.  Linda said that Nikki is a tease, even though she can't talk. She'll  use her  expressive eyes to communicate with those around her. "She can be a  real joker," Linda says. Nikki was given a talking machine (which  currently needs repair) and when she was instructed on it, the dealer  suggested to Linda that Nikki be allowed one word to express her  frustrations. Linda settled on "damn." It didn't take Nikki long to  not only let people know when she was unhappy,  but that she could also get their attention when they were just around  the house. Whenever she wanted to get a rise out of her mother or  other people she would hit the "damn" button just out of orneriness.  FAYCO's slant While Linda and Nikki face the very real and awful  possibility that Nikki may not get to continue at FAYCO, it is also a  dilemma for Lindberg. "We are agents of the state," he says. "The  families placed a great trust in  us when we accepted their family members into the program. Now the  state is  saying we have to breach that trust."  The money FAYCO receives is important. There are currently 18 FAYCO clients  in the DT program affected by this ruling. Lindberg says that eight  could be  lost. With other cuts from the Department of Human Services, FAYCO  could lose as much as $178,000 this year. Since most of the money goes  for staff,  this will mean extreme cuts.  "We use money from a variety of sources to put together a coherent program.  We need state dollars beyond the minimum to make it work. When you cut state  dollars, you lose more federal dollars," Lindberg says. "What's worse  is that you lose good help, training costs go up. There is already a  waiting list of people who want to participate in the DT program.  Yet, we may be forced to cut services for those we already have."  FAYCO serves nearly 300 individuals in Fayette, Montgomery and Bond  counties. Many of these men and women do packaging and light assembly  such as making pens. FAYCO was also the prime contractor for new  uniforms for the  Department of Corrections. Lindberg had FAYCO clients do as much work  as possible, but most was sub-contracted to other firms, like DeMoulin  in Greenville. The money earned goes to make the program grow. A new  building is planned for the Schram City facility that will provide  better facilities for the DT  clients.  In the meantime, Lindberg worries about keeping Nikki and her other DT  friends in the program. He says he'll find a way, some way. But he  also says  he may be forced to make Linda decide.  So, it's back to the beginning of the story.  Linda wants her daughter to continue to go to FAYCO. "It's a part of  her now. She is happy there. I worked and we waited for six years to  get her into the program. I don't want her to lose it." "But I don't  want to let Nikki go now either." Linda needs the "homemaker" money  and would find it difficult to get work while Nikki is at FAYCO. It's  only six hours a day and Nikki sometimes has health problems that keep  her from going to the workshop. Linda's parents are elderly and can't  always jump in to care for Nikki at the last minute. If Gov. Ryan's  budget is passed as is, with cuts planned for Human Services  as announced, Linda will be faced with the awful choice of taking  Nikki out  of the program she loves.  Linda will never give Nikki up to a group home as long as she can care  for her by herself. She considers her daughter a wonder. "I learn from  her every day," Linda said. "I can't offer her that much. I've  never known her any other way than how she is. If she were like you,  she wouldn't be Nikki." A final word  A writer, especially a journalist, is supposed to be objective and should  inform readers of any conflicts of interest in reporting a story. I have  served on the board of FAYCO for several years. It's been a pleasure to  report on the work of the organization. But more importantly it's been a  pleasure to report the many success stories of the men and women who are  served by FAYCO.  I am quite naturally biased. I believe that for individuals like Nikki,  FAYCO is a godsend. From another viewpoint, I believe that Nikki is one of  the best things to ever happen to FAYCO.  She is a remarkable young woman. The work of the staff of FAYCO, to care for  her and others who are disabled, is difficult at best. Nikki, through  her smile and spirit, communicates a humanity that is inspirational to  us all. She is as important to FAYCO and the men and women who work  and are served there as FAYCO is to her. That relationship should not  be severed because of a budget item. There are  other Nikkis yet to become a part of FAYCO and its sister  organizations around the state. Any Department of Human Services that  can't find the means  to help Nikki and others isn't worthy of the name.