Showing posts with label autistic. Show all posts
Showing posts with label autistic. Show all posts

Friday, July 26, 2013

Rapper Sorry For ‘Offensive’ Autism Lyric

Rapper Sorry For ‘Offensive’ Autism Lyric


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(Updated: July 23, 2013 at 1:04 PM CT)
After making critical mentions about autism in a recently-released song, a hip-hop recording artist is apologizing.
J. Cole took heat in recent weeks from many autism advocates over a verse he contributed to Drake’s “Jodeci Freestyle.” In the song, Cole says that he’s “artistic” while his rivals are “autistic, retarded.”
Now the rapper is expressing regret.
“When I first saw a comment from someone outraged about the lyric, I realized right away that what I said was wrong,” Cole wrote in a blog post. “I should have known better.”
Cole said the criticism directed his way prompted him to read stories online about parents’ experiences raising children with autism and he is now looking to education himself more about the developmental disorder.
“To the parents who are fighting through the frustrations that must come with raising a child with severe autism, finding strength and patience that they never knew they had; to the college student with Asperger’s syndrome; to all those overcoming autism. You deserve medals, not disrespect. I hope you accept my sincere apology,” Cole wrote.
Drake subsequently took to his blog to apologize as well and indicated that the lyric will be removed from the song.

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Wednesday, July 17, 2013

The Ruling That Could Change Everything For Disabled People With Million-Dollar Trusts

Editor's note: The highlighted text  "...I have not visited him,"  is reminiscent of the current GAL of Alice R. Gore who after collecting thousands of dollars from Alice's estate...had never, ever visited her in the nursing home.   Lucius Verenus, Schoolmaster, ProbateSharks.com 

 

The Ruling That Could Change Everything For Disabled People With Million-Dollar Trusts

A pissed-off judge, a $3 million inheritance, and a neglected autistic man

When Judge Kristen Booth Glen walked into her Manhattan Surrogate's courtroom one day in 2007, she had no idea she was about to challenge the nation's top banks on behalf of tens of thousands of disabled people.
Before her stood lawyer Harvey J. Platt, who was petitioning to become the legal guardian of Mark Christopher Holman, a severely autistic teen who lived in an institution upstate.
Holman had been left an orphan nearly three years earlier after the eccentric millionaire who adopted him passed away. According to doctors, he had the communication skills of a toddler, unable to bathe, dress, or eat by himself.
But before Judge Glen would grant this seemingly perfunctory petition, she had a few questions for Platt.
"How often have you visited Mark Holman?" she asked the lawyer.
"Since his mother died, I have not visited him," said Platt.
"And when you say you haven't visited him since then, how often had you visited him prior to that?"
"I haven't seen him since he was eight or nine," responded the lawyer. "His mother used to bring him to our office with his brother, just to show him my face and so forth and so on, so I haven't seen him probably since 1995 or 1996."
It was around that time that Platt helped Mark's mother, Marie Holman, draft her will and create trusts for him and his older brother. A decade later, when she was dying, Platt promised Marie he'd apply to become Mark's guardian.
"And have you visited the institution which he currently resides in?" Glen asked.
"No, I intend to, but I have not as yet," Platt said, sounding weary. "I don't think even a visit has much significance anyway. He's totally nonverbal—he's never spoken a word. He's potentially aggressive."
This didn't sit well with Judge Glen. When it came to signing away the rights of disabled people to guardians, she was perhaps the most cautious judge in New York. But what came next would floor her.
Platt informed her that Mark's trust had reached nearly $3 million. But while his trustees—Platt and JP Morgan Chase—had collected thousands of dollars in commissions, they hadn't spent a penny on Mark. Medicaid covered his basic care at the institution upstate, but neither the lawyer nor the bank had considered how his mammoth trust might further aid his quality of life.
"Whether there is a cure for his autism or not, the question is: Are there things that could make his life more pleasurable or fulfilling?" Glen asked. "If somebody took him out to the movies once a week, or somebody took him out to lunch, or what he really likes to do is watch football—I don't know. There's always something that could make people happier, and I don't think you could know that without really visiting him and knowing what's going on."
As she spoke, Glen could not have predicted that the case would become a five-year obsession for her. Or that she was about to disrupt a lucrative trade in which some trustees sponge commissions off wealthy disabled people—while doing little to enhance their care.
"They're lazy pieces of shit," says Glen. "It's a business. They collect their commissions, and they think their only responsibility is to invest the money and keep the money safe with no regard for the beneficiary."
Special-needs trusts hold billions of dollars around the country. The funds are set up to benefit people with chronic disabilities, while typically allowing them to keep government benefits like Medicaid. But there's little oversight to ensure that trustees are spending the money properly—or even spending it at all.
"We see a lot of trusts that sit dormant," says Edward Wilcenski, a New York lawyer and former president of the Special Needs Alliance, a national network of attorneys. "It's not uncommon that over a period of three, five, 10 years we don't see distributions made, but we see the calculation of commissions."
The trusts number in the tens of thousands and are held by a long list of banks. Wells Fargo, for example, has more than 1,000 trusts with a total value of more than $1 billion. And as more people with disabilities live longer, their value continues to grow.
They're usually funded with an inheritance or court settlement. But in order for beneficiaries to stay Medicaid-eligible in New York, trustees must have absolute discretion over their money.
The problem: There are virtually no rules governing whether trustees are spending in the best interests of their clients. Worse, the courts can only review these cases if someone complains.
"If someone is severely disabled with an institutional trustee, that person's not going to come to court," Glen says. "There's nobody who will, and that's what's really scary about it."
Marie Holman, Mark's adoptive mother, grew up on a muddy dairy farm in Jefferson, Ohio. The family was poor, even by Great Depression standards, recalls niece Sharon Awad. Marie and 11 siblings shared a farmhouse without plumbing.
Marie looks tall and thin in family photos, with sunny blond hair and a cute bulb nose. She kept her fingernails long and red, even while she helped milk the cows.
During World War II, she managed to get a job as a general's secretary. Afterward, she ran off to Hollywood with her younger sister Betty to become an actress. When that didn't work out, Marie moved to New York, got a nose job, and became a professional dancer and runway model. She lied about her age and stayed on the catwalk until she was 40, long after most models age out.
She fell in love with a wealthy Jewish businessman named Charles Holman. Marie never told her Catholic parents about the marriage. Even Betty Brooks, Awad's mother, didn't quite know what her sister's husband did, except that he did it well.
When Marie came back to Ohio for weddings and funerals, she looked as if she'd gotten lost on the way to a gallery opening. In family photos, she stood a head taller and several sizes slimmer than the other women, one foot pointed in front of the other as if posing for a photo shoot. She wore her platinum-blond hair in a poofy bun and layered on thick mascara. She always wore black.
Soon after she married, Marie had a miscarriage, then discovered she couldn't bear children. Sorrow hung over the couple.
Marie found satisfaction in work, putting herself through secretarial school and working her way up to office manager in a prominent investment bank. Her boss took her under his wing, and she learned to invest when it was something women didn't do. She made her own fortune betting on stocks like Johnson & Johnson.
In the late 1980s, when Charles was dying, he told Marie that he didn't want her to be alone, that she should finally have the child she always wanted. Marie went to an adoption agency soon after he died. She told them she was 47, by then a rather wild claim. When they said no, Marie decided on an under-the-table adoption.
Faking her age again, she found a lawyer who would broker a deal: $15,000 plus hospital bills in exchange for a poor woman's newborn. In the end, the woman took the money and ran. Marie was heartbroken.
But she didn't give up. The lawyer found another poor couple burdened with drug addiction and too many children. This time she got a little boy, whom she named Charles. Marie was 66.
She raised the child in her rent- controlled Upper West Side apartment, decorated floor to ceiling in lavender. She could afford much better, but she was raised with frugality. She wouldn't replace a holey shag rug until she tripped on it.
A year later, Marie got a call from the lawyer. Charles's birth mother was pregnant again. Did Marie want a brother for her son?
Mark was a good-looking boy with olive skin, dark hair, and a big smile. He looked Greek or Italian, but he was born with an enlarged head. Marie knew he'd have challenges. She took him home when he was five days old.
Though a nanny changed and bathed him, Marie spent all of her free time with Mark, taking him to the park or doing exercises to improve his memory and communication skills. The boy was diagnosed with autism when he was seven. Doctors later discovered a seizure disorder, and that Mark was missing part of his brain. Marie took him to countless specialists and spent lavishly on treatment. Mark wouldn't learn to speak, but he pointed and made sounds to let Marie know he was hungry or wanted something. When she smiled, he smiled back. "I know he understands me," she would say.
When Mark was around nine, his mother sent him to an expensive special needs school. She fought to have the government pay the costs and won, according to Awad. When Mark traveled on the school bus alone, Marie gushed with pride.
She didn't like to think about old age and death. But when Marie was in her 70s, her sister convinced her to face facts. Mark was only seven. What would happen to him as an orphan?
In 1995, Marie went to a talk on estate planning at a Manhattan hotel. The speaker was Harvey Platt, an estate lawyer who had written several books on trusts. Then in his 60s, Platt co-chaired a trust for the New York State Association for Retarded Children, the nation's largest nonprofit supporting people with intellectual disabilities.
"The selection of the trustee can be in many instances the most difficult part of creating a trust," Platt wrote in Your Living Trust and Estate Plan, now in its fourth edition. "The trustee must not only be willing and able, but must be familiar with the beneficiary and his or her needs."
Marie approached Platt after the lecture. His face was framed by thick, oval glasses, and he had the manner of an old-fashioned family attorney. Platt agreed to help Marie create trusts for Mark and Charles. When she died, her sister would become Mark's guardian, with Platt as a backup.
Income from Mark's trust was to be spent on his "care, comfort, support and maintenance." Marie also authorized them to give money to "any facility he may be residing in and/or to any organization where he may be a client or a participant in any program(s)." And if Marie and Brooks both died, Platt and JP Morgan Chase would take over as trustees.
Marie's health would take a turn for the worse. In 2000, she tripped on ice and hurt her back. She never walked again.
Soon after, Brooks convinced Marie to move to a bigger place. She bought a corner condo in Trump Place. She placed a red leather sofa in the living room. Above it, she hung a painting of herself in a black evening gown, her trademark bun high on her head.
In 2003, Marie was diagnosed with terminal cancer. Unable to care for Mark, then 14, she placed him in the Anderson Center for Autism in upstate New York. The nonprofit institution, which had been around for nearly 80 years, provided housing, schooling, and life-skills training.
Within two years, Marie was in the hospital. She was 85, and her trademark bun had grown disheveled. Streaks of mascara gave her raccoon eyes. She died in 2005 in the Florence Nightingale Health Center in Harlem, almost 10 years to the day after signing her will. Her estate was worth $12 million.
Since Brooks had died the year before, Platt and JP Morgan took over Mark's trust. The next year, fulfilling what he called a "deathbed" promise to Marie, Platt petitioned to become Mark's legal guardian.
The petition didn't find a warm reception in Judge Glen's courtroom. When she heard that Platt hadn't visited Mark, inquired about his needs, or spent any money on him, she adjourned the hearing. She then summoned JP Morgan to court to hear the bank's side of the story.
In October 2008—during the heart of the banking crisis—a JP Morgan representative appeared before the judge. Why hadn't the bank inquired about Mark's needs or spent the trust funds on him? Glen asked.
"We're a bank," Glen remembers the representative responding sheepishly. "What are we supposed to do? We don't know anything about people with intellectual disabilities and what they need." (JP Morgan declined comment on the case.)
"You hire people to manage people's money," the judge replied. "Hire people to find out what they need."
Glen ordered Platt and JP Morgan to visit Mark, meet with his caregivers, and figure out how the trust could be used to fulfill his needs—or hire a professional to make recommendations.
Families are often urged to hire banks to safeguard their children's trusts. A few institutions, including Wells Fargo and Merrill Lynch, have specially trained officers. But many have little expertise in actually helping the disabled.
That leaves people like Mark to slide under the radar of trust officers handling hundreds of funds, says Mark Haranzo, a partner at the New York law firm Withers Bergman. "The squeaky wheels are getting the attention and the silent ones are ignored," he says.
"Someone makes a judgment based on their own personal value system about whether someone needs something, and they never bother consulting a professional who understands quality of care and the bigger picture," says Ann Koerner, president of National Care Advisors. "If the trustee's not consulting with family or social workers or case managers or advocates for the client, they're probably not going to be making the best decision."
In some cases, Koerner suspects, banks pay out less than they should because commissions are based on the value of the trust. Big financial institutions may also not have the structure in place to pay for small, daily expenses.
"JP Morgan probably does a very good job in terms of being a responsible steward and investing, but it would probably be difficult for them to give that type of attention to think about ordering clothes for someone, paying a cable bill, getting a computer for them," saysKelly McDonald of Secured Futures Trust, a Phoenix, Arizona, nonprofit.
Ideally, the guardian and trustee serve as checks on each other. But in Mark's case, they were one and the same.
The Anderson Center for Autism sits on a sprawling, wooded campus near the Hudson River in Staatsburg, New York. Mark had lived there for five years by the time Robin Staver, a professional care manager the trustees hired, visited him two months after JP Morgan and Platt appeared in court.
Mark, who was 20, wore earmuffs to block noises that to him seemed painfully loud. He had dark, almond-shaped eyes, a delicate nose, and pouty lips that opened into a bright smile.
Staver had been a care manager for older adults and disabled people for two decades. Before she came to assess Mark's needs, no one had visited him at the school since before his mother died, and he'd never left the institution. When most residents went home for Christmas, Mark stayed behind. Anderson had no idea the young man was the beneficiary of a multimillion-dollar trust.
Mark needed help with basic tasks, like brushing his teeth and getting dressed. He didn't speak, but he seemed to respond to questions by using picture symbols and gestures.
Mark's medication may have actually made him worse, Staver discovered. Keppra, his anti-seizure medicine, has side effects that increase aggression. Mark would often spit, throw things, or hit himself, and had to be closely monitored. There was a time-released version of the medication with fewer side effects, but it wasn't covered by Medicaid.
The trustees agreed to pay for some of the items Staver recommended, including a computer, headphones, clothing, and gift certificates for restaurants. They also hired Staver to assess Mark four times a year.
In June 2009, Glen was finally ready to appoint Platt as Mark's guardian, but with strings attached: He would have to report to the court every year.
New York's guardianship law for intellectually disabled people, known as Article 17-A, is one of the nation's few that doesn't require periodic judicial review. "If a guardian was appointed 15 years ago, we have no idea whether the kid's dead, alive, tied to a mattress in their own crap," Glen says.
Mark, Glen wrote in her opinion, could have remained completely isolated in an institution without his resources being spent to help him reach his potential. From now on, she decreed, all guardians appointed in Manhattan would have to report annually.
Glen didn't stop there. She wondered how many Marks were out there, and how many trustees were getting away with not spending money on them.
By chance, another special-needs case had come across her docket that year. A severely disabled woman had a large fund managed by a corporate trustee. It seemed no one had evaluated her for years, so Glen sent a guardian ad litem to visit her. She lived very comfortably, with a full-time caretaker and chauffeur. But Glen found out that the woman never went outside because she couldn't hold her head up. The trustee never visited her and had no idea she needed a wheelchair that could support her head, or that such a wheelchair existed.
"They were spending a lot of money, but they weren't spending money in a smart way," Glen says.
That same year, Glen ordered Mark's trustees to open their books.
In 2010, Mark moved into his own room at the Anderson Center. During the day, he exercised and worked on communication and vocational skills, like sorting and packaging. He didn't do well with change, and at first he hit staff and himself.
But soon, Staver noticed improvements. Mark had made "significant progress" using pictures to convey words, sentences, and questions. For the first time, he could dress himself, eat with regular utensils, and drink from a cup. He was still aggressive, but he was also playing outside with a ball, watching videos, and eating at restaurants accompanied by caregivers.
"He smiles and will reciprocate gestures such as high fives or handshakes," Staver wrote. (She declined comment on this story due to a confidentiality agreement.)
A year later, Mark no longer needed a safety harness to restrain him during van rides. He could now brush his teeth without help, take laundry in and out of the washing machine, put his plate in the dishwasher, and review his daily schedule. He was using a trampoline, reclining bike, and Nintendo Wii the trustees had bought him, and his Xbox helped him interact with others. He left the facility to eat in restaurants, go bowling, get haircuts, and shop. Staff began planning a vacation to Disney World or the Autism on the Seas cruise.
By 2012, Mark was showering independently. He liked dressing up before eating out and buying a drink for himself after walking a trail. Using new communication devices, he chose the foods he wanted for dinner. For the first time, he could use sign language to say "apple" and "cracker."
One day, as Staver left Mark's classroom, she waved and said, "Bye!" Mark had never spoken in his life, so she expected no reply.
But this time she didn't hear gurgles or inscrutable sounds. Instead, she heard him utter his first word: "Buh!"
In late 2012, as Glen neared mandatory retirement at age 70, she decided to follow up on Mark's case. She discovered that it had been two years since the trustees filed documents showing how they'd managed Mark's trust.
The trust was now worth $3.6 million. In the five years after Marie's death, Platt earned more than $26,000 in commissions, and JP Morgan received more than $52,000. But through March 2010, they had only spent $3,525 on Mark after Glen intervened.
In December, on her last day as a judge, Glen wrote her final chapter in Mark's case, which had implications that would reach far beyond him. She ruled for the first time that banks and other trustees have to figure out what disabled people need and spend money to improve their lives.
Like many of her opinions, this one was unusually detailed, reading more like a novella than a court record.
"The history reveals a severely disabled, vulnerable, institutionalized young man, wholly dependent on Medicaid, unvisited and virtually abandoned, despite a multi-million dollar trust left for his care by his deceased mother," she began.
According to Glen, in the four years since trustees hired Staver and attended to Mark's needs, the intervention "has dramatically improved the beneficiary's quality of life and his functional capacity to enjoy what is now a near 'normal' existence in the community.
"It is not sufficient for the trustees to simply safeguard the Mark Trust's assets; instead, the trustees have a duty to Mark to inquire into his condition and to apply trust income to improving it."
This wasn't just about Mark: It was a "clarion call" for all special-needs trustees, she wrote. "Courts will intervene not only when the trustee behaves recklessly, but also when the trustee fails to exercise judgment altogether."
Glen's decision sent ripples through the banking industry and disability rights community.
"There's a lot of discussion going on in the banks about what to do," says Glen, who hopes they will now educate trust officers or contract outside professionals. "They're now being called to task. If you don't know anything about it, hire somebody or don't take the job."
Glen's decision doesn't fix gaps in oversight, but it gives advocates and judges around the country something to point to when assessing what trustees must do.
"It's not going to be pretty, because it creates an affirmative obligation on [banks] to actually do something," says Bernard Krooks, who chairs the special-needs practice at the law firm Littman Krooks. "Typically, they just invest the money and try to obtain a decent return."
In her opinion, Glen demanded that JP Morgan and Platt provide an updated accounting of Mark's trust. She also recommended that both have their commissions denied or reduced.
"This is very upsetting to me," Platt says. Now 81, he sounds exhausted when he speaks of Mark's case from his Upper East Side office.
"I never gave her any reason to have such a harsh opinion," he says. "It's not pleasant, especially with the career that I've had, and I'm going to make sure that I continue to do what I'm doing. I will never, ever let anyone criticize me."
His delays in visiting Mark and filing paperwork were largely due to health problems, he says. Platt cared for his ill daughter, who died in 2007, and his wife, who was sick for seven years before she died in 2012. He, in turn, has been treated for leukemia and prostate cancer.
"I don't disagree with [Glen] that more trustees should become more proactive in what they're spending, but I think the forum is wrong," Platt says. "All she's doing is requiring legal fees to be paid, and I think that she's gone too far."
In two affidavits Platt filed earlier this year, he said that Glen and Staver took undue credit for improving Mark's condition. "While Ward's improvement or progress was and is 'heartwarming' and a miracle, according to the staff at Anderson, this was based upon Ward's maturing through adolescence rather than any changes in 'medical' treatment," he wrote. "While we credit Judge Glen for her concern and causing the appointment of a social worker, the facts show Ward's improvement was caused by a higher power."
In addition, Platt argued, "If there be fault in the delayed reevaluation and possible changed treatment, it must be shared by society."
In other words, Anderson or even the court may have been at fault for insufficient treatment prior to his appointment as guardian.
Nearly five months into her retirement, Glen sits at the neighborhood diner where she orders "the usual": bacon, scrambled eggs, and sliced tomatoes. She's now a professor at the City University of New York School of Law, where she was once dean, and has spent the last few months speaking about Mark's case and others at events around the country.
She dismisses the idea that Mark improved simply because he grew older. "Had he not gotten these interventions, he would not be in that situation.
"When you think about an institution that gets the shit payments they get from Medicaid, they do their best," she says. "But they can't do one-on-one. They can't carefully teach somebody to use a communicative device. They can't take people out to restaurants. The more somebody interacts with the community, the more they're allowed to exercise their choice, the more they learn how to make decisions."

Wednesday, June 12, 2013

" JUSTICE FOR KEITH "

"Justice for Keith" by Steve Bilski


" JUSTICE FOR KEITH "
By Steve Bilski
 
PART ONE
It’s shocking how one day everything is going great, life is good, you’re working hard to support your son, and suddenly nefarious people come into your life.  They are people you’ve never met, you don’t know, who don’t know you, and they begin saying vile things about you and sending you mail that’s full of lies and false accusations.  It’s shocking and so incredibly hurtful.  And there is practically nothing you can do about it. 
 
But this is not the beginning of my story, and I pray it won’t be how it ends.
 
My story begins with the birth of my son Keith who experienced a devastating beginning to his life.  He was born early on the morning of June 17, 1981, and he was healthy--at least for a short while.  A few hours later, though, he developed breathing problems.  The doctor thought it was allergies and so he did nothing.  But it was not allergies.  It was b-strep infection: Spinal Meningitis.  At one point Keith even stopped breathing.  He ended up spending almost a month in the hospital.  Then, about a year later, he was diagnosed with cerebral palsy and epilepsy.  Keith is now also non-verbal, autistic and mentally challenged.
 
In 1985 and early 1986, with advice from a lawyer, Keith’s mother and I filed a malpractice suit against the doctor and the hospital.  In 1993 Keith was awarded three million dollars.
 
However, I separated from my wife in 1986 due to her infidelity, and the divorce was finalized in May of 1987.  In November of that year and while involved in a serious relationship with a new boyfriend, she gave birth to a second child.  At the time I began drinking heavily and had trouble handling everything that was happening.  Then in 1988 I received a DUI while suffering what was a very low point in my life.  However, the power of change is infinite and wisdom does come with time.  So I am now proud to say that I have been sober since January 1992.
 
According to the divorce decree, Keith’s mother and I had joint custody of him, which included joint decision making. Plus I had visitation every other weekend and one day during the week.
 
As it is, since 1992 I have had my son a minimum of three days per week as well as every weekend except one. The stipulation is, as long as I am nice and cooperate with my son’s mother, I am allowed to see Keith.  But I have not been allowed to make important decisions in his life.
 
I had heard stories about mothers playing games with visitation, and this could not be more true than with my son’s mother who played many of them.  I did my best to avoid fighting with her, to protect my son, and be with him whenever possible.  However, one time I suffered for eight weeks without seeing Keith due to an argument with his mother.  There were many other instances I was denied visitation as well.
 
I would show up at her door to pick up my son to take him out for a great time and she would deliberately start an argument about some irrelevant thing and then end it with: “You’re not taking him!” This happened so many times I lost count.  So I decided to pick my son up from school on Friday afternoons and drive and return him to school on the following Monday just to avoid confrontations with his mother.
 
I can remember almost every time I dropped him off at his mother’s home. By the time I had gotten back into my truck parked on the street in front, Keith was inside and had crawled up to peer out the living room window.  He would push the drapes aside and squeeze his face into the window pane so he could watch as I drove off.  Oh my God, the sad, painful expression on his face!  It was like, where are you going, Dad?  Why are you leaving?  He would do this almost every time after I dropped him off. I can still see him in that window, and would every night after I arrived home and be unable to sleep.
 
Because of his disability, Keith can’t talk.  So he shakes his head to show he means no and nod his head up and down when he expresses yes.  Often while I would be driving him back to his mother’s his little head would be moving from side to side, saying, “No!  No!  No!” 
 
His physician, Dr. Mary Keen, told me that Keith has what is called separation anxiety. She prescribed medication, and it has helped. Keith also has had behavior and social issues which throughout his life have held him back. I still pray every day he will get the help he really needs. As it is, he has changed schools on average every two years and most of his numerous teachers simply did not know what to do about his behavior or how to handle him.  Numerous professionals told me that Keith could do better if his parents would agree on putting his needs first—which obviously we hadn’t.
 
During the 1980’s I paid six thousand dollars per year for two years so Keith could attend a highly recommended special education school.  This was a school he would have been able to attend for most of his life, even through high school and beyond.  
 
The school was located less than thirty minutes from his mother’s house, and his attendance was good and he started making progress.  During these two years his behavior was good and not an issue.  But after the second year he was not allowed to return because during that summer while he was at home he began the bad behavior all over again.  So the school felt it was wasting its time and didn’t allow Keith to return for a third year.  
 
It was after this when Keith began changing schools almost every two years.  He went through numerous teachers, like I said, and he was traveling farther and farther away from home to get to school. The years passed and he became old enough to attend high school. The school he was to attend, however, was one and a half hours travel time one way. And this was in violation of Illinois special education law. The high school, though, was inappropriate for Keith.  Plus his case manager, Laura Pearlman, did nothing for him.  She wouldn’t even attend his IEP meetings.
 
I, for one, did not want Keith traveling that far to and from school every day, and have to do it for four years. But I was given no say in the matter! Laura Pearlman would not talk to me and I believe she undermined the relationship I had with anyone. She even sent me a letter regarding my back surgery I had to have and how inconsiderate it was of me to pick the date I did for the surgery. The truth was I had no rights, and Keith was in the wrong place.  It all reminded me of a scene from the movie “My Left Foot” with Daniel Day Lewis where they put him in a class with students who are worse than he is, and he manages to yell “Get me out of here!”
 
I know that not all options were looked at by Keith’s mother and definitely not by his case manager. My opinion did not count and I was not allowed to make any decisions regarding Keith’s schooling or welfare.
 
I visited and interviewed other high schools and found there were several that would accept him. As it is, the School District requires that students must live in the district at least four nights a week. At the time, however, he was living with me three nights a week and sometimes four.  But neither Keith’s mother nor his case manager Laura Pearlman would agree to Keith changing schools, even if it meant his attending a better school that offered a better education and which was closer to home.
 
My son’s last day of high school was on a Friday in August of 2002. The following Monday I drove him to start his attendance at a workshop for special needs children, but officials there would not allow us to enter. He was not allowed to attend because no one had registered him for the workshop. The thing to know is when you have a special needs child it is very important to plan for him in advance—sometimes even years in advance. It is often very difficult to find a good day program or workshop. There are not many openings because these programs are usually filled with special needs children who stay enrolled with them for the rest of their lives.
 
I was seriously taken aback.  I did not understand what the heck was going on for no one had informed me Keith had not been registered.  I immediately telephoned his mother, and she acted surprised and said, “I will call Laura Pearlman.” 
 
Keith’s case manager then called me and informed me there were no plans for Keith after high school.  Why she hadn’t informed his mother or me of this, she didn’t say.  But I suddenly felt extremely despondent.  There would be no more physical therapy, no more speech therapy, no more music therapy, and no more interaction with peers!  I volunteered to become his caregiver during the days and weekends.
 
This settlement had been handed over to a judge named Benjamin Novacelsky, and to the probate court because my son was a minor.  Then my son’s settlement was put into a trust held by Northern Trust Bank and Patty McLeroy.  And an attorney, Roberta Evans, was appointed to make sure my son did not get cheated out of his money!
 
Along with a guardian ad litem named Jean Adams and case manager Laura Pearlman, (Owner of Consultants on Disabilities).  A budget was set to pay for these individuals and other services, as well as provide for all of Keith’s cares and needs only during his time spent at his mother’s home.  In addition, his mother was receiving a monthly budget of $4,115.00 plus child support from me, and also was paid twenty hours of in-home attendant care at $16 per hour each week.
 
I received totally nothing--zero dollars!--during all these years even though Keith lived with me three-plus days a week. It was a financial struggle, which I somehow managed to survive.  And no one cared at all about, to say the least.
 
Early on, a new specialized 1993 Chevy van was purchased with his money, complete with a wheelchair lift to transport him to school, doctors’ appointments, hospital visits therapy sessions, social events, etc.  My ex-wife, Keith’s mother, would not allow me to use my son’s van to drive him anywhere.  Roberta Evans had told the judge that I could not obtain car insurance because of the DUI I received in 1988. 
 
But I emphatically informed the judge this was not true.  I had insurance and it covered any vehicle I wished to drive.  But to this, the judge said nothing, and the subject was quickly dropped. Clearly the judge did not want to hear what I had to say.
 
I had in fact a pickup truck which I regularly used for my roofing and snow plowing business.  Since I could not use his van, I had to physically lift Keith into the front seat and then lift and secure his wheelchair into the bed of my truck where it had to be tied down and covered up to protect it from the weather.  This whole process had to be done in reverse each time I returned him to his mother’s house.  Okay, this was not so bad when Keith was really young and small and weighed little.  But as he grew in size and weight, it really exacted a toll upon my back.
 
I took a chance and hired an attorney.  I ended up spending tens of thousands of dollars on many attorneys over time but this one managed to get Keith’s bills finally reimbursed. What’s funny is that I still have to submit receipts while Keith’s mother never has to account for what she does with his money.  It also cost Keith tens of thousands of dollars spent for attorneys hired by his mother to oppose every word I spoke and effort I made to help Keith.  The typical monthly budget for Keith’s mother would include (among other things) $250 for clothes, $350 for diapers, $300 for utilities, $125 for parking and tolls, $200 for gas, $400 for activities, and $1,575.00 for miscellaneous!  
 
All of this was for only three to four days per week when she had custody of Keith.  Meanwhile, I was paid nothing for costs and expenses.  Plus I paid her child support, which I daresay I was proud to do on behalf of Keith.
 
I always made sure my family had insurance.  My insurance was based on how many hours I work, and I always made certain to work sufficient hours no matter how many were needed to obtain the best possible health insurance.  
 
What I found telling was how my son’s mother would almost never attend court. She rarely came and only for the guardianship hearings.  As Keith became an adult Judge Miriam Harrison became Keith’s new judge.  Around this time I hired another attorney.  All I wanted to do was ask Judge Harrison if I could please have some help for him so I could go to work when I needed to.  For Keith’s mother refused to care for him during my allotted time.
 
But when in court for this action, Judge Harrison looked me straight in the eyes and told me I didn’t have an obligation to pick up my son, so no help needed to be provided  and my work was not an issue.  To this, I was shocked!  And I thought: Oh, but I’m obligated to pay child support, huh?  But I don’t have an obligation or right to father my own son?  It seemed apparent to me when my son suddenly got this huge financial settlement that I was no longer needed. What judge would dare ever think that children don’t need their fathers?
 
In 1996 I sold my pickup truck and quit my snow plowing business.  I did this because I could no longer take Keith with me while I plowed.  For it wasn’t fair to Keith.  I ended up using the equity in my house and bought a used 1988 Ford van with a wheelchair lift.  I now drive a 2004 van also purchased with my equity.
 
Eventually my back gave out from all the years of lifting Keith and his wheelchair. This led to my having to choose surgery so I would be able to return to my job as soon as possible.  Laura Pearlman had repeatedly reported to the court that I was not working, when in fact I was. Actually I had worked off and on for two years while going through all kinds of medical tests and procedures.  I also received therapy for my back in hopes of returning full time to my job to keep my benefits.  So I had my first back surgery in 1998 which made things only worse.  
 
I then picked up part-time work delivering magazines to make ends meet. I currently have no insurance for myself. Keith also had surgery in 1998 (to which I did not agree with the hospital or the doctor chosen).  Still, a petition was filed by his lawyers to proceed with his operation without my consent.  Again they wanted to modify the divorce decree! And again I had to pay a lawyer to withstand their legal onslaught. 
 
Still, Keith never received the therapy he needed and stopped walking after high school and getting exercise.
 
Then a brand new 2000 van was purchased (for my son’s mother to mainly use) to replace the 1993 Chevy van. Some years later they purchased yet another handicapped van, and Keith had never been in either of the last these two vans purchased. I drove him to all his doctors’ visits.  I used the equity from my home to purchase two special vans of my own to use when with Keith.  In effect, I ended up practically spending my life savings to help Keith and be with him and to pay for lawyers to facilitate this.  All this I did only to get stomped on by his mother, the attorneys she hired using Keith’s trust fund, as well as by a bias court system only too ready to always rule in her favor.  For I came to learn exceedingly well how unfair the court system is to fathers and their children.
 
When Keith turned eighteen in 1999 I filed for guardianship.
 
At this time Keith’s lawyers petitioned for his mother to be Keith’s sole guardian. Then I received a notice to appear for a deposition.  Everyone involved with Keith’s case was there including the two divorce attorneys and Roberta Evans who had been hired to oversee Keith’s money.  What ensued was a proverbial case of them against me. 
 
Divorce Attorney Frances Krasnow asked me if I wanted a lawyer and I said yes.  They then phoned Judge Harrison and she ordered I proceed without one.  So I answered their questions to the best of my ability--and oh boy, did they drill me.  They tried to paint me as a bad father.  But all I wanted in my life was to provide for Keith’s welfare and his needs to be looked after.
 
For years I had been taking Keith to the dentist for regular checkups.  The dentist chair was a bench seat with a high back and it wasn’t comfortable for Keith because he could not extend his legs due to his Cerebral Palsy.  Each appointment I would talk him through it and assure him everything would be okay, and he usually did well at appointments.  Then in February of 1995 Keith’s school notified his mother with a note that his teeth were bothering him.  X-rays showed that his teeth were impacted and overcrowded.  The dentist said something had to be done soon or Keith’s teeth would start coming out from the top of his mouth.  And sure enough, that’s what happened!
 
His mother said she would take care of this.  Keith was in pain and I wanted to help him.  I needed to help him.  But by October still nothing was being done to fix his teeth.  So I made an appointment with an oral surgeon.  He immediately told me that a simple solution was to pull out a certain tooth. I had grown frustrated waiting for his mother, so I took Keith to have this tooth extracted, and then drove him home to his mother’s house.
 
She kicked up a storm and asked me why he had not been in school that day.  I told her that I could not sit back and do nothing to help Keith’s situation and that he badly needed this tooth taken out and she had done nothing about it.  So I took it upon myself to follow through with the dentist’s recommendation to help our son.
 
She immediately called the attorneys for the estate and they sent me a letter stating I had no right to take him to the dentist without his mother’s knowledge and consent.  But according to our divorce decree, it states that in the case of an emergency I have every right to take such action.
 
Soon thereafter I received a letter from Roberta Evans and Jean Adams stating I had put Keith at risk because I failed to supply the oral surgeon with Keith’s prescription list.  This was totally false, for I acquired a copy of the medical form which I had filled out prior to the tooth extraction, and it clearly states all his medications.
 
Keith does not see a dentist on a regular basis as recommended by his Doctor.
 
In another incident, I received a letter in the mail from Jean Adams claiming I had failed at various times to provide Keith his medicine.  And this was patently false.  Soon, I reached the stage where I was in constant fear of opening my mail!  Strange how these lawyers could fabricate all these false accusations when all they had to do was make a few phones calls to verify actual facts.  But I know they wouldn’t do this and don’t do this because their purpose was to try and destroy me!


 
PART TWO 
Keith began seeing a psychiatrist who wanted arm restraints put on Keith’s wheelchair.  He claimed this was necessary so Keith would not hurt anyone. So they put arm restraints on his wheelchair.  But they just made him angry and more aggressive so I removed the straps, for they also left bruises on his arms. In no time I received a copy of a letter from Jean Adams telling the court I had sliced the straps off. But in fact I only unscrewed them. Meanwhile, another conscientious doctor wanted to give Keith electric shock treatments. I was about ready to lose it. Oh, my God, I thought! Who are these people? 
 
At a hearing in court Jean Adams stood next to me and told the judge that I had not been giving Keith his medication.  I looked at her in shock.  This is not true, I exclaimed!  How malicious and dishonest could this “official of the court” be, I wondered. 
 
Then attorney Adams petitioned the probate court to take $2,000.00 from Keith’s trust fund to use to have our divorce decree modified giving Keith’s mother sole custody.  In addition to this, Keith’s mother hired a divorce attorney named Ms. Petrucci who needed to be paid a retainer of $2,000 for her services.  Immediately Jean Adams petitioned the court to authorize money taken from Keith’s estate to pay for this.
 
Again there is Keith’s case manager Laura Pearlman, another individual appointed by the court.  She has attacked my character repeatedly over the years without ever providing evidence or facts to support such attacks.  She claims to be a mediator, but instead, she’s anything but.  One of her many harmful acts was when she modified a school letter so it would appear that Keith’s behavior worsened whenever he is in my care.  
 
Ms. Pearlman would pick up Keith’s mother and provide transportation for her at various times.  This was because Keith’s mother could not drive by herself, for she had been diagnosed with agoraphobia.  Ms. Pearlman would charge Keith’s estate ninety dollars per hour to drive his mother around.  Naturally with all occurred without my knowledge or consent.  Ms. Pearlman also facilitated the actions of Keith’s doctor.  The doctor would prescribe medication for my son without consulting or informing me.  
 
Once I found out, he informed me that he had been led to believe Keith’s mother possessed sole authority to make medical decisions for Keith.  However, Keith’s mother and my divorce decree clearly states we are to make medical decisions jointly!  Everyone involved with Keith knew and knows this, including Laura Pearlman.
 
During the time Keith was on my roofer’s insurance he was eligible for a new wheelchair every four years, which worked out very well, I believe.
 
However, my insurance ceased when I could no longer do my job after my back surgery in 1998.   So he has not had a new wheelchair since then.  According to his doctor, he had outgrown this wheelchair.  Despite this, we applied for a new one and he was fitted for it back in August 2011.  We are still waiting for it to be funded by the state.  But I cannot understand why we have to wait so long and wait to get one from the state when there is more than enough money in Keith’s trust account to purchase one immediately, especially since he needs a new one right away. 
 
As of the writing of this letter, I have learned that Keith has to return to Easter Seals to be remeasured for a new wheel chair because his previous measurements have been lost.
 
I came to hire a new attorney named Theresa Varnet from the law firm of Spain, Spain & Varnet who was herself the mother of a handicapped girl.  I thought she would never let anything like this to happen to her Daughter so she would have some compassion for Keith and see how he was being mistreated and neglected.  What Ms. Varnet immediately did was put a young attorney from her firm on my case.  Her name was Jamie Levin Murial.
 
Ms. Murial told me that Jean Adams had contacted her stating she was going to petition for $2,000 from Keith’s estate to hire a mediator the help Keith’s mother and me settle matters between us.
 
But instead of doing this, Jean Adams filed a petition to used Keith’s money to modify the divorce decree to give Keith’s mother sole custody and be able to make all decisions regarding Keith’s life. Looking back, I didn’t know who was lying (or perhaps lying the most!): Ms. Adams or Ms. Murial.  But I immediately stopped the services of Spain, Spain & Varnet.  I still owe them some money. No matter.  Roberta Evans then hired Ms. Murial to file an Obra 93 trust. I became curious to know if Ms. Murial was paid what I owed her firm from Keith’s trust. I thought to myself: Hmm!
 
A few weeks later I had a private pre-hearing meeting with Jean Adams and an unknown judge. This judge recommended that I should drop my guardianship petition because no judge would grant me guardianship after they opened and read my son’s case file. Because in his file is a litany of documents chronicling all the irresponsible, destructive behavior I had supposedly carried out which put my son in danger. I was stunned! I said to this judge that all of it was lies.
 
Well, a few weeks later it was time to go to trial, and once again we met first in a private room.  Present were Jean Adams, Roberta Evans, Laura Pearlman, divorce attorneys Frances Krasnow and David Eide, Keith’s mother, my friend Angie, and myself.
 
At this meeting the lawyers tried to persuade me to drop my guardianship petition, and they were all very intimidating.  I knew with all the letters and threats they had made that things would only get worse.  However, I love my son very much.  Though my heart was racing and my body was shaking, I stood up to them.  Then it was time to go and the meeting was concluded.  Before departing, Frances Krasnow approached me and said that if I did not drop my petition for guardianship, visitation to see my son would be taken away.
 
Oh, my God!  After all the lies and false accusations and fabrications they had set against me and put in my son’s file and all the pain they caused me and how they defamed my character in front of the judges and had harassed me, I suddenly panicked, I could not go on, and said okay, you win.  I could not stand there in front of the judge and get bombarded with more of their lies and vile, dishonest stories. I literally could not get to my feet and stand up, and dropped to the floor!
 
Weeks later, after it was all done, one day I opened my mail and there was a statement from the Northern Trust Bank. The statement showed that fees were paid to Frances Krasnow and David Eide for over $19,000!  I couldn’t believe that Judge Harrison had approved payment—and such a payment--to two divorce attorneys.
 
Over $19,000.00 of Keith’s money was appropriated to pay off these divorce attorneys from the law firm of Neal, Gerber and Eisenberg.  Why the divorce lawyers were brought in for this to begin with, I never understood.  They had threatened me to drop my petition or I would never see my son again.  So, because I was devastated at the thought of not seeing Keith again I dropped my petition.  As it was, I could not afford to pay for another attorney. 
 
My savings were gone! My equity was gone!  All the money I had spent on lawyers I could have spent on Keith—if only to buy him a new wheelchair which these supposed protectors of his welfare would not purchase with his own money for him!
 
Ms. Roberta Evans, attorney for Keith’s estate, reminded me that Keith could not have two guardians.  She seemed very pleased with the decision I made.
 
Around this time I tried to get more speech therapy for Keith.  The court approved the purchase of a computerized talker for about $8,000.00.  But Keith was only given thirty minutes of training per week with this machine. Keith’s therapist soon told me that he could be doing much better if more time and training were provided to him. She even gladly wrote a two-page letter for me to give to Judge Harrison recommending more speech therapy and how Keith would benefit from it. But naturally Judge Harrison denied any funding.
 
I wondered how anyone in Keith’s condition could benefit from this tiny amount of thirty minutes of therapy per week, which lasted for five months during the year of 2000. Eventually, Keith began receiving no therapy because of the therapist’s unavailability.  Again, I was horrified by the fact that Keith’s mother and case manager Laura Pearlman never attended a single IEP meeting in the four years it was given to assess Keith’s progress or development. Why pay someone to do a job that they’re not doing.
 
Keith’s physical therapist (PT) quit in 2003 and was never replaced. He would only come once a week anyway. That is not enough therapy for Keith. He has had Multiple Surgery’s and without the proper therapy, Keith would not benefit from the surgeries. Laura Pearlman once again fails and Keith pays the price.
 
I take Keith to the pool to swim and play, and to ride his bike which he loves to do.  And I taught Keith to walk 1000 feet which he would always do when he was with me.  Now he doesn’t walk at all. All this has been very hard to accept. Still, Keith has worked very hard and has made great progress despite all these obstacles and setbacks over the years.
 
Keith participates in the Special Olympics!  He bowls, swims, plays baseball and basketball.  Plus Keith has won 39 gold medals, 9 silver, and a few bronze metals, too!
 
We travel to Florida and to other states.  We go to concerts (Keith loves Bruce Springsteen) we have seen him perform over 50 times, Willie Nelson (we have a picture taken with him) Huey Lewis and The News, Vince Gill and many more and to lots of parades! Keith’s mother has never been to any of Keith’s practices or tournaments. She takes him nowhere because of her anxieties.
 
I know if something happens to me, that all of this will stop. There is no one in Keith’s life other than me to continue caring about his well-being and happiness. There is No Plan. I wish I could do something about this, and do so much more for Keith.  But I am not allowed to.
 
Because of the neglect of Keith’s health, he had two severely decayed teeth removed in the spring of 2012.  This was preventable and Keith should have never had to go through such suffering and pain.  It was all totally unnecessary.
 
One day I received a letter dated march 24, 2011 from Jean Adams. Apparently about some confusion over medication that was prescribed by Dr Keen. Keith’s Mother had asked that we not advise the court. Again Jean Adams threatened me, if I ever undertook to make any medical decisions in the future for Keith without first notifying Cindy that they would be compelled to bring the matter before the court.  And my failure to cooperate could result in my visitation with Keith being terminated.
 
Keith’s mother and I had been with Doctor Keen when the doctor prescribed Risperdal for Keith in 2006.  However, if Ms. Adams would have contacted Dr. Keen she would have gotten the facts. Instead, like always, she and Keith’s mother overreacted. They continually threaten to take my father’s rights away, use Keith’s funds in nefarious ways, and apparently have nothing better to do than send me threatening letters every chance they get.
 
I have contacted many probate lawyers in Cook County and most of them will not help because they know Jean Adams.  She is well-respected and not to be trifled with.  My son’s mother is an ex-employee for her village in the local police department and she campaigns for the mayor, state representatives and senators and even The President.  
 
I have filed a complaint with the states attorney’s office and they simply told me they are understaffed.  I have also contacted Equip for Equality on three different issues, and they told me their funds are limited and plus they have ties with Judge Harrison.
 
What is clear is this: Keith’s mother, all her attorneys, Keith’s case manager, and the court are unified and set against me.  They continue to spend ample time and more and more of Keith’s money with the aim of defaming me, harassing me, degrading me, while ignoring Keith’s needs.  Throughout this time and during all the years this same probate court should have been helping and doing what is best for Keith.  The money in his trust account is for this purpose and for serving and helping him.  How can the court expect to help Keith if they know nothing about him and make no effort to know him and have no interest in knowing what his needs are or what his Skills are?
 
I had no idea what to expect when I became the father of a handicapped child.  I had to find out the hard way on my own.  I dedicated my life to this task and to becoming the very best father possible for Keith.  However, no one else is dedicated to this.  And instead of helping their clients and the parents of children, especially handicapped children, the probate court and its court-appointed attorneys use people--as they have used Keith--for their own personal agenda and financial gain.
 
All I have ever wanted for Keith was to see him happy and be well taken care of.  I want him to have everything he needs and be able to reach his potential.  I want him to have friends, do the things he enjoys, to live comfortably, and be healthy and safe. He needs to be around people who will assist with personal growth, help boost socialization, and who are devoted to his achieving and maintaining fitness goals.
 
However, since my son received a three-million-dollar malpractice settlement early in his life and his money was put into a trust, Keith’s life has suffered immensely.  I’ve witnessed a slew of people over years dedicated to nothing more than to get at his money and line their own pockets with it.  I’ve had to suffer, too, being prevented from helping Keith and doing for him all I wanted and could have done for him.  In fact, it has been hell to me having to witness my son’s needs being neglected and mismanaged, as well as watch him regress due to lack of education, therapy, and care, and from the blatant bias of the courts and family legal system.
 
As I have enumerated herewith, Keith’s health has been sorely neglected.  He still does not get regular and much-needed dental exams or physicals, and his trust funds are not being spent properly but rather being pilfered away from a host of greedy, uncaring individuals.
 
I also have been humiliated, defamed, and threatened by lawyers supposedly hired to protect my son and look out for his best interests.  That I have been the only person who has protected him in every way possible and who has had Keith’s best interests at heart, but been threatened and sometimes prevented by these individuals from doing so, is a travesty of the most heinous and unjust kind.
 
I love my son more and more every day.  I want people to know what's going on.  But I fear I might incur the wrath off my ex-wife--Keith’s mother--and her powerful lawyers and political friends, and the wrath and tyranny of the court itself.  And risk losing everything--including most of all--not being able to see the son I love more than anything in life.
 
TO FOLLOW STEVE BILSKI AND HIS SON KEITH'S CONTINUING SAGA, VISIT THEM ONLINE AT:https://www.facebook.com/steve.bilski?ref=ts&fref=ts. 
DON'T HESITATE TO NETWORK WITH STEVE THERE.  AND PLEASE DROP HIM A NOTE AND LEND YOUR SUPPORT. HOPEFULLY, SOON, JUSTICE CAN BE SECURED FOR STEVE BILSKI AND HIS LOVING SON KEITH! Heart