When special education fails, families learn a lesson in despair while still trying to keep the faith

[Guest guest]

When special education fails, families learn a lesson in despair while still

trying to keep the faith

Tuckerton family fights against bureaucracy, insurance to find right treatment

program for their autistic son

For Lee , special education has been a

school of hard knocks.

Literal hard knocks.

They are manifest in the gaping holes her autistic

son, , 16, has punched through the doors and

drywall in her Tuckerton home and the bruises his

fists have left on her body from his frequent

aggressive outbursts.

“My lip has been split, my nose has been bloodied,

my glasses have been broken,” said , 46.

“Yesterday was a prime example. He came out of his

bedroom and punched me in the face. I don't even

know why.

Such behavior issues are common among children

who are profoundly autistic, experts say. has

had them since birth.

’s complaint is that after stints at four public

schools in four different districts, ’s problems

seem to be getting worse.

In each case, she said, her son was placed in a

fledgling autism program staffed by inexperienced

teachers and aides who weren’t required to have any

special training in autism. The teachers and schools

were under no obligation to show any measurable

results for her son.

The lone bright spot, she said, were the five years

spent at the Children’s Center of Monmouth

County, a state-approved private school that

specializes in autism.

The staff there was “working miracles” with ,

said. His outbursts diminished, and the

family’s home life improved. Then, more than a year ago, the Pinelands Regional

School District pulled out of the school over

his parents’ objections, after the New Jersey

Department of Education enacted new “fiscal

accountability” rules. Those rules were aimed at

getting districts to curtail costly placements to

private special-education schools.

But transferring doesn’t appear to be a cost-

saver.

In fact, his tuition costs, paid for by the Pinelands

district, have increased by 50 percent. While the

Children’s Center charges $56,000 per student,

’s new school, Southern Regional High School

in Stafford, charges $85,000.

The results so far, his mother said, have been

deeply discouraging.

“ is doing horribly, absolutely horribly,”

said on the eve of what she fears will be

another tumultuous school year. “We had to call

911 to save him from beating the living tar out of

me. ... This is like the fourth time.”

is one of many parents of disabled children

who have lost faith in a special-education system

they say is intractable, capricious and

unaccountable.

“There’s no accountability for whether the program

is a success or not,” she said, echoing the findings

of a presidential commission on special education

in 2002.

The commission described a system “driven by

process, litigation, regulation and confrontation” -

not student achievement.

has experienced all of that in the past 13

years, and then some.

“Unless you have the money and the persistence

and the knowledge and the know-how to document

everything, you never win,” she said. “I’m fighting a

system that is so broken, I can’t make it right.”

A classic 'mismatch'

One day, while tried to relate her family’s

experiences to a reporter, , who is 5-foot-9

and 246 pounds, stood inches from her face,

insisting that his mother go buy him a new memory

card for his digital camera.

“Broken, fix it, broken, fix it, broken, fix it, broken,

fix it,” he repeated.

“I can’t fix it. You need a new memory card,”

told her son.

With that, he flung his left arm and struck the side

of his own head with a walloping smack.

The daily challenges of raising a severely autistic

child are enormous, especially for mothers, who

tend to be around their children the most.

One recent study found that mothers of adolescents

and adults with autism experience chronic stress

comparable with combat soldiers.

Transfer those same challenges to a public school

setting, and the problems can sometimes get worse.

“If you look at autism as a severe neurological

disorder that’s essentially being treated in an

educational system, it’s a little bit of a mismatch,”

said Suzanne Buchanan, clinical director of Autism

New Jersey, a statewide advocacy group.

“We’re expecting a lot of our teachers, and even

our special-ed teachers,” she said. “ly, while

some certainly have a wonderful skill set and are

very effective, a great number of teachers are

ineffective, or minimally effective, with students with

autism.”

Michele Goodman, executive director of New

Horizons in Autism, a Neptune-based agency that operates seven group homes and

two vocational

programs for autistic adults in Monmouth and

Ocean counties, said many autistic students still

aren’t toilet-trained when they leave school.

“There are too many adults coming in here in

Depends,” Goodman said. “The system is broken,

and the only people who are able to negotiate

through it are the squeaky wheels.”

The Rules Change

To be sure, is not your average special-

education student.

The vast majority of New Jersey’s 200,000 school-

age special-education students have relatively

minor speech and reading problems, not

incapacitating brain disorders like ’s.

Fewer than 12,000 - less than 6 percent of all

special-education students - are classified with

autism. And many of those are on the higher

functioning end of the autism spectrum. With a little

extra help, they can do as well in school as other

students.

But the same rules, spelled out in federal and state

laws, apply to all special-education students,

regardless of what kind of disability they have.

In 2008, the rules changed.

Under the state’s new “fiscal accountability”

procedures, district child-study teams, which craft

each special-education student’s Individualized Education Plan, or IEP, were

required to consult with

their county executive school superintendent prior

to placing a disabled student in a private school.

The county superintendent, an employee of the

state Education Department, is supposed to help

identify other school districts in the area that could

accommodate the child’s needs.

While the final decision about where to place the

child is supposed to be left to the child-study teams

in consultation with the child’s parents, that’s not

how everyone interpreted the new rules at first.

In the spring of 2009, the Legislature’s Joint

Committee on the Public Schools held public

hearings in response to complaints that children

were being denied private-school placements or

pulled out of private schools they had attended for

years, on account of the new rules.

was among the parents who testified at the

hearings. She recounted how ’s case worker

from Pinelands Regional abruptly informed her that

he couldn’t attend the Children’s Center any longer.

“I was just flabbergasted,” testified. “She

brought no paperwork with her. She brought no

reports with her. There was nothing. It was, ‘Sign

this release to send your son to the closest public

school district because the state will provide us with

no aid concerning his education if you don’t.’”

Messages left for Pinelands Regional’s interim

superintendent, Loggi, were not returned.

At the behest of irate legislators, then-state

Education Commissioner Lucille E. Davy issued a

memo in May 2009 clarifying the rules, but by then

it was too late for .

and her husband, Caldwell, 51, tried to

fight the district to keep where he was,

tapping into their retirement savings to hire an

attorney. But when their legal bills hit $9,000, and

’s favorite teacher at the Children’s Center

moved to Hawaii, they reluctantly agreed to the

transfer.

A Revenue Generator

It is frustrating for to see in yet another

unproven autism program.

“I want to know, what success rate do they have? Show me the data that’s saying

that ‘ is now in a

group home because of all the wonderful things that

Southern Regional has done for him,’” she said. “I

have no idea.”

The district’s superintendent, Craig Henry, wouldn’

t address ’s case, citing student

confidentiality rules.

But Henry noted that the Individuals with Disabilities

Education Act, the chief federal law regulating the

nation’s special-education system, doesn’t require

districts to collect that kind of aggregate data.

“There aren’t any quantified benchmarks for

students,” he said. “There’s no standardized way to

measure the success of a program.”

The only available gauge is parental feedback,

which Henry said has been overwhelmingly positive

since the district started an autism program in an

unused wing of the junior high school three years

ago.

“I would say without hesitation the quality is as

good as it gets,” he said. “Our parents are extremely

satisfied.”

Henry cited the involvement of several local

businesses that are providing vocational training

opportunities for students and the “extensive”

experience of ’s teacher.

Asked what that experience was, Henry said the

teacher took classes in autism in college and spent

a year teaching autistic students in another district. “I didn’t mean it in

terms of experience in years,”

Henry said.

Instead, he said, he was referring to the teacher’s

extensive “interest and time spent studying” autism.

The teacher has even started a nonprofit foundation,

Piece of the Puzzle Inc., dedicated to providing job

training and employment opportunities to

adolescents and young adults with autism.

said the teacher is “wonderful,” but the

school’s program simply “isn’t behavioral enough”

to address ’s severe aggression problems.

“He has no carry-over, no generalization,” she

said. “What they teach him there doesn’t carry over

here, and what I teach him here doesn’t carry over t

here. They can take him to the park (with at least

two male staff members as escorts), but I can’t.”

wasn’t aware that her district is paying

$85,000 in tuition to send to Southern

Regional.

“Are you kidding me?” she said. “For $85,000 my

kid should be tap dancing in Radio City Music Hall.

.... I’m blown away.”

is one of six out-of-district students in

Southern Regional’s program. Their combined

tuition costs account for more than $500,000 in

annual revenue for the school.

Henry said the state Education Department sets the

tuition rates, based on certain eligible expenses.

Southern Regional appears to have the highest

tuition rate among the several dozen districts whose

autism program tuition rates are listed on the state’s

Real Time database, which is still being developed

for county superintendents to access.

Two Union County districts, New Providence and

Warren, had the second-highest rate listed, $76,220

per student.

Many districts charge less than half that amount.

Central Regional, in Ocean County, charges just

over $25,000 per out-of-district student for its high

school autism program.

Gerard M. Thiers, executive director of ASAH, a

nonprofit group that represents the interests of 135

private schools for the disabled, said such rates can

be misleading. While the tuition rates at private schools are based

on actual expenses, the rates for public schools

don’t take such things as employee health benefits,

pensions and overhead costs into account.

ASAH’s own study shows that private schools cost

less than public schools, he said.

“What appears to be a cheaper rate at a public

program, most often it’s not cheaper for the

taxpayers,” he said.

Time Running Out

still has another five years before he turns 21

and has to leave the public school system. His

mother is worried what kind of life he’ll have if he

doesn’t turn the corner by then.

“My goal is to get him to be part of the world,”

said. “That’s every parent’s goal, whether

their kid is a regular-education kid or a special-

education kid. We want them to be the best they can

be.”

Two years ago, and her husband tried to get

into Kennedy Krieger Institute, a pediatric

hospital in Baltimore, whose 16-bed

neurobehavioral inpatient unit treats autistic and

intellectually disabled children as young as 5 with

especially severe behavior problems.

said the highly selective institute accepted

“within 26 minutes” of observing his

behavior, but she and her husband ran into health

insurance roadblocks and weren’t able to get him admitted.

said there isn’t an inpatient treatment

program anywhere in New Jersey that comes close to

what Kennedy Krieger offers.

“That is where needs to be,” said.

tried to get Medicaid to cover the

hospitalization but was told the family’s income was

too high.

Now, she and her husband, who have two other

children besides , have reached such a low

point that they’re considering getting divorced,

simply so could qualify for Medicaid and get

into Kennedy Krieger.

“If that’s what it comes down to,” said, “that’

s what we’re going to do.”

This story is the fifth part of a six-day series. It

originally ran First in Print in the Nov. 18, 2010,

edition of the Asbury Park Press.

Mullen: 732-643-4278; smullen4app (DOT)

com PUBLIC SCHOOL TUITION COSTS

Special-education costs vary widely by district. Below

is a sample of tuitions charged to educate out-of-

district students in public school autism programs.

The sending district is obligated to pick up the tuition

costs.

1) Southern Regional H.S., grades 9-12: $85,000

2) Newbury Elementary School, Howell, grades K-5:

$32,579

3) Bayshore Jointure Commission, ages 3-21:

$45,000

4) Central Regional H.S., grades 9-12: $25,264