We have a waiting list of 22,000 children and adults with intellectual and other developmental disabilities. Our system is one of the haves and have not’s. While Governor Quinn is to be commended for his efforts to rebalance the disability system by closing obsolete state institutions and this year alone moving 1,550 people off the waiting list so much more needs to be done. We find ourselves in this position because of the lack of leadership of past administrations. We must provide the resources to enable families to support their children and adults with disabilities rather than the crisis to crisis planning that we do now. We do have a solution. It is the “Illinois Blueprint for System Redesign.” It is a seven year template to move the Illinois Disability System to a system that supports families and community living. It is time for Illinois policy makers to embrace the “Blueprint” and support families who have children and adults with disabilities here in Illinois. It is clear that the system failed Alex and his family. It is time to make community living the top priority for system reform now.
AUTISM AND THE TRAGEDY OF ALEX SPOURDALAKIS
‘When you look at the gap in services, and what families have to go through… it makes you want to scream.’
On a Saturday afternoon in March, Alex Spourdalakis, a 14-year-old boy with severe autism, sat in a darkened room at Loyola University Medical Center with his mother and godmother nearby.
In a hushed voice, Dorothy Spourdalakis told an autism care advocate who had come to offer help that she had been at her son’s bedside around the clock for weeks. The only time she stepped out of the room, she said, was when he slept — in short catnaps.
“She was very calm,” said Mary Kay Betz, executive director of the Autism Society of Illinois. “She seemed like a very caring, loving mother who wanted what was appropriate with her son.”
Three months after that quiet visit, Spourdalakis’ relatives arrived at the family’s River Grove apartment to discover a grisly sight: Alex had been stabbed to death in his bedroom. His mother and godmother lay nearby after swallowing multiple pills in an apparent suicide attempt, according to officials.
The women survived and now face charges of first-degree murder.
Though no one condones the crime, experts across the country say the case serves as a shocking example of the tollautism can take on an entire family.
While the boy was not familiar to the public, his case was known in some autism circles, and photos of him — often strapped to a bed — appeared in videos and Facebook posts from around the world as people argued about treatments and causes.
The slain teen has become a celebrity of sorts for a group of critics who contend that hospitals routinely ignore other physical issues they contend are at the root of the autism.
The criticism is flatly rejected by medical experts, autism researchers and advocacy groups that maintain the predominant form of treatment — early diagnosis and intervention — offers the best chance for improving a child’s progress and outcomes.
Still others say the case spotlights a need to make more resources available to families caring for someone with developmental disabilities. Because of limited state resources, such families can face a 14 1/2-year wait to receive assistance at their home through the state Department of Human Services, advocates say.
“When you look at the gap in services, and what families have to go through … it makes you want to scream,” said Shawn Jeffers, executive director of the Little City Foundation, a Palatine nonprofit that offers assistance to those with autism and other disabilities.
The River Grove Police Department was used to getting calls from the neat, well-kept second-floor apartment on West Grand Avenue where Minas and Dorothy Spourdalakis, described as “really nice, hardworking people,” lived for nearly two decades, Chief Rodger Loni said.
On seven occasions, the couple requested help in getting their strong, unwilling, 200-pound son to the doctor’s office. Six to eight police officers were needed to assist ambulance personnel in strapping the boy to a stretcher, Loni said.
There were never signs of abuse, and police never responded to the apartment for any other types of problems, Loni said. “They were under a lot of pressure and burden because of the situation,” he said. “We never had a problem there.”
But on June 9, police received a 911 call from Ski Wysocki, Dorothy Spourdalakis’ younger brother. He and the boy’s father, Minas, had rushed to the apartment when they couldn’t reach Alex’s mother or the godmother and caretaker, Jolanta Skrodzka, by phone.
After kicking in a locked bedroom door, the men discovered Spourdalakis and Skrodzka semiconscious in Alex’s bedroom, where the boy lay dead, prosecutors said.
In a letter found in the apartment and in statements to authorities, Spourdalakis, 50, and Skrodzka, 44, spelled out a pact to kill Alex, who they believed received subpar treatment from medical providers and was suffering after his most recent prolonged illness, officials said.
According to prosecutors, the women allegedly gave Alex an overdose of his prescribed sleeping medication; when he remained alive several hours later, Spourdalakis used a kitchen knife to stab him four times — twice in the heart — and slit his wrist.
She then gave the knife to Skrodzka, who killed the family cat so it would not end up in a shelter after they were dead, prosecutors said.
The women had met at a family wake in 2000 and remained close despite Skrodzka being in the country illegally on an expired visa, Loni said. They requested in a letter that their bodies be cremated and the ashes spread in Michigan’s sand dunes, he said.
Members of the Spourdalakis family declined to comment, but on various social media sites they described Alex as smart and said he loved music, cards, nature, balloons and the color yellow.
Police, court documents and autism advocates offered a glimpse into the family’s history that, in some ways, parallels the stress of many families dealing with autism, which affects 1 in 50 school-age children, Betz said.
In 2005, Minas and Dorothy Spourdalakis filed for bankruptcy, records show. Minas, an optician, worked in an optical office managed by his wife. The couple allegedly had more than $400,000 in credit card, medical and other debts, according to records.
Among the family’s regular expenses were $300 per month spent on diapers for Alex.
By February of this year, after nearly 23 years of marriage, the couple filed for divorce. Alex required full-time, round-the-clock care. His mother asked the court to grant her sole custody of the boy, while the parents agreed their older daughter should stay with her father, records show.
The father and daughter moved to Oak Park, but Minas Spourdalakis returned to the River Grove apartment routinely to check on Alex, Loni said.
Help for families dealing with autism can come from a variety of places, depending on a child’s diagnosis, advocates say.
Children from birth to 3 years old can receive early intervention at one of dozens of state-funded Child and Family Connection programs. Public school districts are required to offer free and appropriate education to school-age children with developmental disabilities.
In addition, more than 2,000 providers in Illinois — from churches to for-profit practices — offer services paid for either out-of-pocket, by health insurers or by Medicaid.
But in recent years, many of those providers have stopped accepting Medicaid patients because the state has been slow to send money, citing budget constraints, advocates say.
Januari Smith, a spokeswoman for the Illinois Department of Human Services, said care for the vulnerable is a crucial part of the state’s mission, with numerous services serving thousands of children with disabilities.
“Over the last several years, like all other state agencies, IDHS’ budget has decreased,” Smith wrote in an email.
It is unclear what type of assistance the Spourdalakis family received over the years to deal with Alex’s autism.
A state Department of Children and Family Services investigator visited Alex on Jan. 24 in response to a hotline allegation of neglect but found no wrongdoing, officials said.
Family members refused DCFS referrals to community-based services ranging from respite to psychological counseling, said Dave Clarkin, DCFS spokesman.
Two months later, when Alex was admitted to Loyola and diagnosed with what was identified in his parents’ divorce papers as “aggression and a sleep disorder,” Dorothy Spourdalakis began publicly voicing her disapproval of her son’s medical treatment, including in a report on Chicago Fox station WFLD-Ch. 32.
A spokesman from Loyola University Medical Center declined to comment.
Groups around the world known for their criticism of mainstream autism treatment approaches quickly embraced Alex’s story. They posted updates from representatives who visited the boy’s bedside, including now-discredited Dr. Andrew Wake-field, whose 1998 study planted one of the first seeds of fear about an alleged link between vaccines and the disorder.
Wakefield eventually was stripped of his right to practice medicine in the United Kingdom, and his study was retracted by the journal that printed it after it was found that he made up data and that his paper was fraudulent.
In a video appeal posted online in May, Wakefield appeared next to a shirtless Alex, arguing that the teen should not be institutionalized in a psychiatric facility, as hospital officials had recommended.
Wakefield contended that Alex instead needed a “safe place” with treatments, necessary diet and assistance for his aggressive behavior.
It was around that time that Betz, of the Autism Society, discovered Alex’s story online.
Although her agency, by policy, does not endorse any autism treatments, therapies or philosophies, Betz saw reports of the Spourdalakis family’s struggles and felt compelled to offer help.
She worked with hospital officials to schedule a visit with Dorothy Spourdalakis. And on that Saturday, the mother welcomed her into her son’s room.
A “don’t knock” sign hung on the door in respect for the boy’s noise sensitivity. They sat in a corner away from Alex’s bed as Skrodzka, the caretaker, silently watched.
Betz recalled how she told Dorothy Spourdalakis that, although she couldn’t promise her state money, she would do whatever she could to help get the support the mother needed.
Spourdalakis said all she wanted was an attorney.
Betz found a lawyer and thought the boy’s mother was doing better. Then she learned that Alex had been stabbed to death in his bed.
“It really was a gut punch,” she said. “We thought everything … was going good.” firstname.lastname@example.org email@example.com firstname.lastname@example.org
Alex Spourdalakis, 14, who had severe autism, was found stabbed to death at home.
Dorothy Spourdalakis stabbed her son and slit his wrist, officials say.
KERI WIGINTON/TRIBUNE PHOTOS Grace Aman, 9, holds a tablet computer Friday at the Autism Society of Illinois in Lombard. Mother Susan is at right. Because of limited resources, families affected by autism can face a long wait for state help.
Jolanta Skrodzka and Alex’s mom attempted suicide, officials say.
Mary Kay Betz, right, head of the Autism Society of Illinois, at the tablet giveaway. Betz tried to help Dorothy Spourdalakis and her son.
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