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Thought this was a very interesting story.

Marie

Parents struggle to find care for autistic child

He desperately needed to be placed in a residential facility to receive care.

That was easier said than done.

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August 29, 2010

BY MICHAEL DRAKULICH

When Kathleen Fenlon drove by a Mc's and her 14-year-old son, Colin,

wanted to eat there, there would be little choice for her but to acquiesce.

If she didn't, Colin likely would undo his seat belt and try to wrestle the

steering wheel from her to steer the car into the parking lot.

» Click to enlarge image

Kathleen Fenlon and her husband Mark Panozzo talk about placing their autistic

son, Colin, 14, in a residential facility as their other autistic son, ,

11, runs through their Oak Forest home.

(Brett Roseman Southtown/Star)

Inside, if there were someone sitting where Colin always sat, Kathleen would

have to try to explain the situation to the complete strangers and hope they

would move. If they didn't, Colin would go into a grunting, falling-down

tantrum.

During one of what she calls Colin's public " meltdowns, " people were so shocked

by his behavior, they called police. They don't understand, she said.

Colin is lucky he hasn't been hit by a car. Because of his impulsiveness, he's

been known to run out into traffic in the Oak Forest neighborhood of

single-family homes where the family lives. And if a classmate had something he

wanted, Colin would climb over furniture, throw things out of his way, push,

punch and do just about anything he could to get it.

Colin can't help these aberrant behaviors, though.

He was diagnosed with a particularly severe form of autism exacerbated by

obsessive compulsive disorder.

He simply doesn't know how to act appropriately when he doesn't get his way.

Colin's doctors, therapists and, reluctantly, his family all agreed the best

option for his continued treatment and education would be to have him placed in

a residential facility.

With the state being in such an economic crisis, the family figured finding a

facility would be easier than getting state aid to help pay for Colin's

treatment.

They found the exact opposite to be true: The state would pay for the

residential part of Colin's care; the local school district would be responsible

for paying for his educational services.

Finding a place that would take Colin, it turns out, was the real challenge.

The difficulty

Besides his disability, Colin has physical challenges that made his placement

more difficult. He's highly allergic to a rather long list of foods: wheat, soy,

corn, tomatoes, egg whites and oranges. If he eats any of them by mistake, they

can cause painful lesions in his esophagus. The most serious of his allergies is

to peanuts, which will send him into anaphylactic shock.

To compound matters, Colin's behavior became more violent and potentially

harmful to himself and others. He took to head-banging when he didn't get what

he wanted. And he's put his head through a window and damaged walls during

outbursts.

Colin's mother, Kathleen, and father, Mark Panozzo, believe the rush of hormones

brought on by puberty made his behavior more erratic and violent. To get Colin

under control in those instances, the family would have to get him admitted to

Streamwood Hospital, a special psychiatric hospital where he would be heavily

sedated and could receive 1-on-1 care. He was hospitalized nine times in three

years, with his last hospitalization lasting 120 days.

Caring for Colin became a full-time job for Kathleen and Mark; so much so that

Kathleen lost her job in retail and Mark lost his job as an insurance salesman

because of the extraordinary time they spent caring for Colin.

" There is nothing I would want more than to have my son at home, " Kathleen said

as she wiped away tears. " But he has progressively gotten more difficult to

manage. We just can't do it anymore. "

The first problem encountered by Colin's family in placing him in a residential

facility: There weren't many to choose from, especially for children. Of the

facilities that could accommodate Colin, none was run by the state. All are

managed by private companies.

Colin's applications were rejected because of his allergies and the potential

liability they could expose a private company to, his mother said.

The family hired professional advocate Wanzenberg to help with Colin's

placement.

Wanzenberg is a former teacher and school administrator who helps parents

navigate state and federal laws pertaining to children with disabilities to get

the services they need.

" For the lion's share of kids (with disabilities), 98 or 99 percent have their

needs met within the public school system. Of that 1 or 2 percent of those who

aren't having their needs met, there are very few with the severity of Colin's

disabilities, " Wanzenberg said.

He said Colin needs a round-the-clock educational program. When he lacks

structure at home or when school isn't in session, that's when he's prone to

aggressive behavior. But because of Colin's allergies, which complicate his

care, private facilities get nervous, Wanzenberg said.

" Their defenses go up. There are a lot of knee-jerk reactions. People are scared

of liability. And these private companies can make their own rules and

regulations, and that can be frustrating to families, " Wanzenberg said.

Besides hiring Wanzenberg, Colin's family went through numerous state agencies

looking for help and usually came up empty. They even tried to enlist the help

of Illinois Attorney General Madigan and U.S. Sen. Dick Durbin. Both told

the family it was not within their purview to help, Kathleen said.

They even considered out-of-state facilities.

Kathleen and Mark were able to connect with some sympathetic staff members at

the Illinois Department of Human Services, who helped pursue placement for

Colin. Ultimately, the Camelot facility in Des Plaines took a second look at

Colin's application. After 1 1 / 2 of Kathleen and Mark searching and making

more phone calls than either can count, Camelot accepted Colin's application,

and he was placed at the facility in July. He will receive the kind of therapy

he needs as well as continue his education, all in a residential setting.

The Department of Human Services' division of developmental disabilities is

paying for the residential part of his care. The educational services he

receives are to be funded by Bremen High School District 228, according to the

family, because Colin would have been a high school freshman in the district

this year.

Time to revise the system

Despite relief at finding a place for their son, the whole experience has left

Kathleen and Mark with an unpleasant opinion of mental health care systems, both

public and private. Colin's parents said it shouldn't have taken so long to find

a place for their son.

" Illinois has to be one of the worst states for helping the disabled, " Mark

said. " It seems as though you really have to know someone if you want to get

anything done. "

Dr. Nichols, who treated Colin at Streamwood Hospital, said he wasn't

surprised by the difficulty the family had in finding placement for him.

" Colin is definitely one of the most severe cases of Autism Spectrum Disorder

I've ever had. And there are a limited number of beds in Illinois for treating

the disorder on a long-term basis, " he said. " Allergies played a role (in

placement). These facilities don't want to make a mistake and don't want the

child to have a bad reaction. "

Nichols said a hospital setting such as Streamwood isn't as worried about

liability because it provides medication and 1-to-1 staff-to-patient ratios to

curb destructive behavior. A residential facility might be wary of a case such

as Colin's because it is likely to have fewer staff members and cannot keep as

close an eye on its residents, he said.

Lilia Teninty, director of the development disabilities division for the

Department of Human Services, said placing a child in a residential facility can

be a long process. There are more people who need services than there is funding

available.

The agency doesn't provide services directly. It acts more as a facilitator

between those who need services and the private agencies that provide them. The

state encourages home-based services if at all possible, Teninty said. But in

extreme cases when there is no other option but a residential placement, the

department will assist families in finding the right setting.

Ultimately, placement is left up to the individual facility. Teninty said if

that facility doesn't feel it can provide the right services, it has the right

to turn away the applicant.

Calls to Camelot for comment on this story were not returned.

ellen Bucci, the administrator at Easter Seals Therapeutic Day School, where

Colin used to attend, thinks doctors' reports regarding Colin's allergies

contributed to the difficulty in placing him. She said she believes the reports

may have characterized the allergies as more severe than they were.

She said there are some cases at her school where children have such severe

allergies, the staff can't even risk having the child in the same environment as

their allergens. But that wasn't the case with Colin, she said. To be safe, the

school had an epinephrine pen to counteract the reaction in case Colin ate one

of the foods to which he was allergic.

" We may have had to seat Colin further away from kids who were eating peanuts or

other foods he was allergic to. But it wasn't like he couldn't be in the same

environment, " Bucci said.

" None of us here felt that his allergies should have been the deciding factor

for these facilities to reject him, " Bucci said. " But these are a unique set of

circumstances. I've never come across a case like this one. "

Bucci credited Kathleen and Mark's tenacity in getting Colin placed. She said

they did everything they possibly could to be heard and did not take " no " for an

answer.

Kathleen and Mark said Colin is getting used to his new environment and has had

some incidents. But over time, they believe Colin's behavior will continue to

improve under the right guidance.

The family's outlook on the state's system for helping the disabled isn't as

rosy. They're convinced it is broken and needs to be fixed.

WHY WAS COLIN TURNED AWAY?

Dr. Nierman, a child psychologist, assistant professor at the University

of Chicago and the medical director at Chicago Lakeshore Hospital, said it's not

unusual for a family to face rejection when trying to find a residential

treatment facility for a loved one with developmental disabilities.

The state of Illinois has gotten out of the practice of running such facilities,

leaving them to the private sector. The state's role is as a potential funding

source, Nierman said, with the Department of Human Services providing the

funding. Nierman thought it was unusual that Colin's family was rejected by

private residential facilities based on Colin's allergies. He said facilities

should have been able to adjust to accommodate Fenlon's dietary restrictions.

But he said he also sees why a private facility would be wary.

" When kids have language barriers or are impulsive, extraordinary measures,

extraordinary individualized care may be necessary. Staffing may be a problem.

It may come down to, 'Can we provide what this child and his family needs?' The

answer might be 'no' because there is so much risk involved in his

impulsiveness, " Nierman said. He said neurobiological research indicates

autistic teens going through puberty have shown spikes in aggression, making

them " almost impossible " to deal with, and Colin's increased aggression and

allergies may have been factors in his being turned away. If a scenario comes

down to four kids applying for one opening, Nierman said, a candidate such as

Colin may be the fourth out of four likely to be accepted.

WHAT IS AUTISM SPECTRUM DISORDER?

Autism Spectrum Disorder is a disorder in which the different areas of the brain

fail to work together, resulting in a person's inability to communicate and

interact with others.

The Autism Society of America states that symptoms begin to appear from birth to

age 3. They often manifest themselves in delayed speech, repetitive movements or

behaviors, lack of eye contact, a fixation on certain objects and a lack of

interest in relationships with others.

Children do not outgrow autism. However, the society states that early diagnosis

and intervention can result in better quality of life.

The Centers for Disease Control in Atlanta released its Autism Prevalence Report

in 2009, indicating that autism occurs as frequently as 1 in 110 births.