Tuesday, October 20, 2015

What to Do With Louie, Revisited

     A family on the next block put up this sign in their yard — actually a number of them. Which made me think of Louie Herrera, a 28-year-old man who lives in Elmhurst with his family who, coincidentally, have a similar sign in their yard. 
     I met Louie and his family six years ago, after his mother wrote to object to a piece I had written about Misericordia, the home for people with developmental challenges. Those kids would be fine, she suggested. But what about her son, who had just turned 22 and thus was no longer eligible for state services? I think she was surprised to hear back from me, and even more surprised to find me in her kitchen shortly thereafter. 

     If Louie Herrera's parents beat him, if they abused or abandoned him, then he'd be all set: The State of Illinois would be able to swoop in and see that Herrera, who has Down syndrome, was placed in a large, public facility that could offer structure -- supervision, classes and work experience -- to help him live a full life.
     "That, unfortunately, is true," says Lilia Teninty, director of the Division of Developmental Disabilities for the Illinois Human Services Department. "We have 'crisis criteria,' where, if people need that, we immediately put them into services. Beyond that, we don't have a lot of flexibility in adding services."
     Alas, Herrera is not in crisis. He is the "heart and soul" of a tight-knit, loving family in Elmhurst, which, unfortunately, happens to be in Illinois, thus creating a further difficulty.
     If Herrera lived in another state, he might be able to avail himself of services from a small group home or shelter workshop located in his neighborhood -- in Michigan, 82 percent of people with developmental disabilities are served in such settings. In Illinois, the figure is 30 percent, making it dead last -- 50th out of 50 states, right behind Mississippi, Louisiana and Arkansas -- when it comes to supporting community services for people with disabilities.
     Scarce Illinois resources are focused on large facilities, and even those are hard to get. People with disabilities who are trying to find whatever help is available in Illinois go on a waiting list to be evaluated. That waiting list currently has 16,000 names on it.
     "We don't have enough money to serve them all," says Teninty.
     That's the bad news.
     The really bad news, for Louie Herrera, is that his name isn't even on the 16,000-person waiting list. His family has been told that now that he has become an adult -- his 22nd birthday was Friday -- he is officially on his own, and the state cannot give him even the hope of any kind of assistance.

                                                                - - -

     Louie Herrera is a broad-shouldered, sturdy young man with a ready smile. Though some of his tastes mirror those of his peers -- he plays and coaches basketball and enjoys cooking -- his musical preferences are unconventional for someone of his age.
     "I like watching the Wiggles," he says, sitting in his mother's tidy kitchen, with its rooster motif. "I like 'Hannah Montana.' "
     Herrera was born with an extra 21st chromosome, a condition commonly called Down syndrome. Because of that extra chromosome, he exhibits a range of traits, including almond-shape eyes, a percussive manner of speaking and an IQ of about 50.
     I met Louie because his mother, Cheryl, wrote to me after I ran a column about Misericordia, the large Catholic facility on the North Side for people with developmental disabilities. She said that such places are fine, if you can get into them. But what about all those thousands of people who can't get in? Or those who don't want to go to a large setting and live with hundreds of people?
     The Herreras would prefer Louie to stay at home, where he has always been, and where most people with disabilities -- where most people, period -- prefer to be. But finding someplace nearby that welcomes someone like Louie Herrera can be next to impossible.
     "We've been finding a lot of these shelter workshops have been closed down as a result of funding," says his father, Louis Herrera. "Even if you do find a slot, you have to pay for it."
     Their search has been mirrored statewide. The struggle between a system that favors large institutions and the trend toward small community homes is a central concern for the disabled community.
     "This is not just about service, not just about a system that supports institutionalization vs. community living," says Marca Bristo, CEO of Access Living, a Chicago advocacy group for the disabled. "This is at the heart of our civil rights struggle."
     "Civil rights" may be a phrase not much associated with the disabled, but courts have increasingly viewed their situation in that light — the landmark 1999 Supreme Court Olmstead decision said, basically, that forcing citizens to receive care in large facilities when they prefer not to is a form of discrimination.
Louie Herrera, in a recent photo
   "We see so many people, especially young people, who have no business in nursing homes, ending up in them," says Bristo. "Some go in for short-term stays because they have some medical issue that needs to be addressed, and they never get out — and they never get out because of the way our public financing system is set up. It doesn't support community-based living. It's an individual's battle to find their way out."
     Battle is the word. Cheryl Herrera gave me a thick stack of photocopies of the letters, forms and reports she either sent or received trying to find a place for her son once he turned 22 and could no longer go to Elmhurst schools. She works as a substitute teacher, her husband as an accountant, so paying for Louie's care themselves is not an option. Yet leaving him at home would be like parking a 7-year-old in front of the TV for nine hours a day and hoping for the best.


                                                                 - - -

     Those who are not related to someone who has Down syndrome, who have never met one, might automatically be put off by their outward appearances and thus may fail to grasp how loved they are as individuals by their family and friends.
     "Louie is the heart and soul of the family," says his father. "He has an outgoing, extraverted personality and is so pure in his nature and how he views things. So many people are touched by him when they meet him."
     One of those Louie Herrera touched most deeply is his younger brother, Doug.
     "People have misconceptions about everything having to do with special needs," says Doug, who's 19. "They look at them and see someone who's different, someone who drools or walks funny. They're too timid to actually get to know them."
     A sophomore at Illinois State University, Doug Herrera is studying special education and plans to spend his career working with people like his older brother.
     "I've always looked up to him," Doug Herrera says. "Through him, I've gotten to know a whole bunch of people with other disabilities, growing up and meeting his friends, hanging around his classrooms. I was always involved with people with special needs, always able to work with them. It's a rewarding job, and I really developed a passion for it."

       —Originally published in the Chicago Sun-Times Feb. 8, 2009

    The deep cuts to state programs since this was written have not affected the life of Louie Herrera. 
    "He's actually doing pretty good," Cheryl Herrera told me Monday. "He does a couple of programs; right now he's doing one through Gigi's Playhouse, out in Hoffman Estates, three days a week.  It's a little far, but we're managing. Two other days he's at Monarch, through Ray Graham, and in that one, he's really out and about in the community." 
     When we spoke on Monday, they had just gotten home from the library.
     "Louie likes the library," she said. "We go once a week."  
     Louie also works one day a week at a local camera shop, Elmhurst Photo on Spring Road, helping to clean and handle small tasks.
     "He feels very useful," his mother said. 
     His brother, Doug Herrera, who was studying to be a special education teacher in 2009, is now 26 and doing just that.
    "He works with really significantly-challenged kids at the Kirk School in Palatine," his mother said 


  1. My spouse used to do social work, before he switched fields, at Ray Graham and not Ryan I thought it was. They have some good programs. This one was in the Northlake or Franklin Park area. Good eye opener of an article and worth the repeat and follow up.

  2. Good article. UCP Sequin in Cicero and Elim Christian Services in the Southwest suburbs have good programs for adults with developmental disabilities and may be good resources to try, I have dealt with both organizations and was very impressed with their success in providing opportunities for people like Louie.

  3. If your criteria for a good or well off community is how they treat the less fortunate, then we're awful. What the heck does the state do with all the money it collects.

    Thank God for businesses that hire Louie and give him useful tasks. I hope they get rewarded many times over for what they do.

  4. Well it's a win win. The businesses don't have to pay high rates for the labor.

    Unfort. some disabled have bad tempers and can't work in such a setting.

    1. It's true it's not simply charitable -- they can indeed contribute to the bottom line. Not too many years ago such people tended to be hidden away and not given a chance to work..

      And it's probably also true that we probably can do the disabled a disservice by assuming they are all saints. My mother was a teacher who spent a few years with "special needs" children, and I recall her saying that most of them were lovable, but the few that weren't were very disruptive. And the parents weren't always helpful..

      Tom Evans

    2. Tom - I got the strong impression that Neil was writing that ALL special needs persons deserve to pursue a life of their own, with the proper supports that are necessary to achieve that. He was inclusive, not making the distinction that only properly behaved persons and saints are worthy.

      As a mother of a 25 year old special needs daughter I know Lizzy better than anyone. I know her struggles and know her difficulties which at times result in behaviors not always acceptable by some. Some people judge a situation without knowing anything about Lizzy. That is WRONG. Mothers like me are stared at, given looks of disgust, and given hurtful unwelcomed advice. We can't understand why some people don't see the person inside, and only focus on the outward behavior that is the result of their simply trying to get through the day.

      Mothers and fathers may not be "helpful" with schools; I am one of the mothers that was labeled as difficult and disruptive, simply because I had to move heaven and earth to get Lizzy the help she needed and I was not afraid to fight for her. Many supports that are available cater to one type of person. But the people with "special needs" are made up of unique, individual persons that are totally different in every aspect from each other. One size does not fit all, and I feel sad for the students your mother labeled as not lovable. And am glad she no longer teaches them. My heart aches when Lizzy is not loved and judged because I know she struggles everyday of her life.

      I am exhausted from loving her 24 hours a day. I need helpful, supportive, and understanding people around me when I go out in public. Please please listen to me when I say it is WRONG, UNKIND, and HURTFUL for the parents of these wonderful children to be judged in any way by people who know nothing of the struggles we face each and every day.

      We love our children and know that they deserve extra help, which is costly, because they need it!! My husband passed away and now I am the sole caretaker of Lizzy. I live everyday in fear of no longer being able to care for her because I don't know what society will do to help her. She deserves to be important and loved by people who have her best interests in mind. She simply deserves to have a loving place to live. Is that really too much to ask our government to provide? We are the wealthiest nation in the world and must be judged by how we care for those lesser than us.

      Thank you Neil for this piece. It is perfect in every way. It was so true I cried! It needs to be updated now that we have a very different administration in charge of federal funding. I was told by Lizzy's social worker that there will be major cuts in 2019. Thanks again.

      Cathy Hartgraves

  5. Nice piece, NS, and I enjoyed seeing that image showing the front page placement it evidently received, along with the other photos. Given the state of funding at this point, I imagine that this is another instance where you feel like you were shouting into a strong wind. But you deserve credit for pursuing this story, especially based on reader feedback, and at least you shined the light that you could on the issue.

    You'd think that we cocky Northerners who love to look down our noses at our allegedly benighted Southern countrymen and women would be ashamed to trail even the likes of Mississippi, Louisiana and Arkansas when it comes to providing proper assistance for the disabled. Evidently not, especially if making things better might require -- gasp! -- additional taxes.

    As for the brilliantly sold Republican lie that all taxes are evil and that the government should be shrunk down to the point where it can be drowned in a bathtub, Paul Krugman had an interesting column about Denmark in the "N. Y. Times" yesterday. Lord knows, patriotic Americans wouldn't want to have that kind of economy -- we'd much prefer to watch the rich get ever richer, as the flailing middle class shouts USA! USA! while shooting our guns into the air.


  6. Thank you for writing about what is so important to all families who have family members with special needs. We take it day by day and make sure that we are doing what is best for our children. My goal is the same for all 3 of my young children: to live happy, healthy and productive lives . That being said, my daughter, Maddy, who has Down syndrome, might just have to live her happy, healthy and productive life outside of the dismal, financially strapped state of Illinois!

  7. Well Denmark is a Social Democratic state, of course. Some say that can only work for smaller nations but try selling that to mainstream America. Bernie is the closest hope we can have for that, but again, good luck with that.

  8. Well at least we don't suffocate handicapped kids at birth like in China.

    1. That isn't exactly setting the bar very high, is it?

  9. Exactly! it's meant sarcastically. We can do much better. Don't expect Rauner to care these days.

  10. You done good Steinberg.

    Thanks for holding exactly no one accountable for your stats.

    50 outta 50. Perhaps Illinois can be the 51st state when set against
    Puerto Rico, DC or Guam.

    Too much to call a state rep or a stuffed shirt in Springfield. ?


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