Parents, Schools Often At Odds | Autism PDD

NorwayMom, it is so sad & sick to me...you'd think the funds for special
ed or such resources came directly out of the principal's wallet! Another
article (a few years old, but worth the read), again about my & local
school districts. Startling...


Fort Worth Star-Telegram (TX)
February 16, 2003

Special-ed planning is skewed, critics say
JENNIFER RADCLIFFE
Star-Telegram Staff Writer

It's like a scene from a prime-time legal drama. There are whispers, tears
and behind-the scenes coaching from high-paid attorneys. But in these
cases, the person whose fate is at stake is a child -- like 11-year-old
Jeffrey, who is autistic, or 8-year-old Amber, who has developmental
delays. And the setting isn't a courtroom, but a school library or office.
These are the Admission, Review and Dismissal meetings, where
parents and school officials are required by federal law to work together
to plan the education of special- needs children. In most cases, the
parents, teachers and administrators work together amicably, school
officials say.

But in handling contentious cases, administrators are being trained to
make the meeting environment uncomfortable for parents. The goal is to
avoid prolonged discussions, lawyers say. If school officials expect
parents to disagree with them about a child's education, they should
crank down the thermostat and give parents straight-backed, unpadded
chairs, Don Henslee, a lawyer from Austin, advised about 35
administrators during a Texas Association of School Boards training
seminar last fall in Dallas. "The last thing we want is people getting
comfortable," Henslee told them. "It is a war room. Accept it. Set it up as
one." The meetings usually become contentious because parents haven't
accepted their child's disability and they expect the district to "fix" it,
school officials say. And the more severe the child's disability, the
more likely the case will become heated, they say. "It's a real hard place
for a parent to be," said Genni LaPlante, director of special education in
the Keller school district. "Sometimes I have found that some
parents have been fighting for their child's life. They've gone through just
a litany of situations. ... I think they kind of come at us fighting
sometimes," said LaPlante, whose teen-age son has Down syndrome and
is a student in the district. But such training seminars fuel the suspicions
of some parents and special- education advocates who say school
districts resent having to spend money on students with disabilities. "I
never cease to be amazed at how callous they are behind parents' backs,"
said Fort Worth lawyer Marvin Adams, who opted to home-school his
autistic daughter, Calie, rather than keep fighting the Weatherford
school district to get services for her.   

In Texas, about 500,000 children are enrolled in special-education
programs -- about 12 percent of students -- according to the Texas
Education Agency. School districts across the state spend .8 billion on
special education every year. About billion is spent on regular
education, which includes 70 percent of students. On average, schools
spend 0 a year more per student to educate special-education
students than they do regular-education students, the agency says.

The federal Individuals with Disabilities Education Act says these children
are entitled to a "free and appropriate education." Parents and educators
are to be equal partners in determining the education goals
for each child.   The goals set during the meetings become the primary
focus of the child's education. In some cases, they can be as simple as
learning to shake a rattle or to blink once to answer "yes" and twice to
answer "no." In others, the goals may be learning to read or obtaining job
skills. Even without the concerted effort to make some parents
uncomfortable, the meetings can be intimidating, many parents said.
They are outnumbered by school officials, flooded with test scores and
diagnoses about their children that they have never seen before, and
confused by the administrators' use of acronyms and abbreviations --
ARDs, ADA, IEPs and IEEs.

Educators are often unyielding once they have decided what to offer the
children, parents say. At one seven-hour ARD meeting, a parent from
Carrollton had to face off with 17 Lewisville school district officials. The
parent was offered two 10-minute breaks during that time. Another
meeting was held in August in a school with a broken air conditioner.
Another was conducted by flashlight after the school's electricity went
out. Special-education lawyer Gary Mayerson of New York said he has
seen school districts nationwide use intimidation tactics on parents.
"They'll say, 'You have other children in the school district, and we're
going to be together a long time.' The translation is, 'Don't push us. We'll
have opportunities to retaliate against your other children,' " he said.

School officials also have ways of making parents feel uncomfortable if
they disagree or want different services. "They may say something like,
'We can't believe you have an issue with that. No parent has ever
had an issue with that,' " Mayerson said. "They make you feel like you're
an alien from the planet Pluto. The whole purpose is to get you to feel so
intimidated that you don't make a peep." He said Texas is
especially difficult for special-needs students.   "My one-word pithy
advice for any parent that lives in Texas is that they should move,"
Mayerson said. "I've given up believing that the system can work in
Texas." If moving isn't an option, parents should keep detailed records,
videotape their child's progress and pay for independent evaluations of
their child's performance. Henslee said his tactics -- cold rooms and
unpadded chairs -- are designed simply to keep difficult parents on task.
He said his advice applies to less than 1 percent of cases, though he
didn't state that at the training seminar. "You have no idea how many
times we've been shouted at, yelled at, cursed at," said Henslee, whose
firm -- Henslee, Fowler, Hepworth & Schwartz -- represents about 320
Texas school districts. "The circumstances have been beyond the
bizarre."

Both sides agree that parental mistrust is often the reason that meetings
become contentious. "Mistrust is probably the biggest issue I see
overall," said LaPlante, the Keller district's specialeducation director.
LaPlante said only a few dozen of the district's 2,500 annual Admission,
Review and Dismissal meetings are difficult. Districts say the mistrust
results from unrealistic expectations by parents, who are encouraged
by special-education advocates to sue if those expectations aren't met.
Some parents ask districts to provide expensive one-on-one training, in-
home therapy or reimbursement for private-school tuition. By law,
school officials cannot use financial or staffing constraints as reasons to
not provide services. But the expensive items usually cause the most
disagreement, parents said. Many of the disputes can be blamed on
the advocates, Henslee said. "In our experience, some have acted rudely
and abusively," he said. "I think it's a small minority of advocates that
tend to create large problems." Teresa Williamson, special services
coordinator for Arlington schools, said there are about 6,000 students
receiving special-education services in the district.

Last year, Williamson's office performed almost 9,000 ARD meetings.
Most of them went well, she said. "Communication is the key," she said.
"The more parents understand the process and terminologies, the
more involved they'll feel." Williamson said her staff often spends time
with parents before or after a meeting making sure they understand the
issues. "We certainly don't want parents to leave feeling like they
haven't been a part of the process," she said. "It has become a more
complicated and litigious process over the years. But I believe the process
is a good one if the focus is on communicating and doing what's best
for the child." Williamson said she is reluctant to blame any one party for
causing discord in the meetings. "That's kind of speculative, and I'm
more of a factual person," she said. "Certainly there are advocates and
attorneys that come, and that doesn't make the process what it is
intended to be. When that happens, it takes the focus off the child."
Parents must remember that they are a partner in developing educational
goals for their children but not necessarily in deciding how to meet those
goals, Henslee said.

If parents want to challenge the district's decision, they have the right to
a due-process hearing, he said. In the 2000-01 school year, parents in
Texas filed 379 such due-process complaints. Of those, 73 went to
hearings, the Texas Education Agency says. Almost always, school
districts prevail in the hearings, which are conducted by a hearing officer
assigned by the agency. But it costs an average of ,000 for a district
to contest a case, Henslee said. That money could be better spent on
educating parents about their rights, he said. Parents said they don't
trust school officials because they try to keep parents in the dark about
their legal rights and are unwilling to listen and respond to parents'
wishes for their children. Henslee's advice encourages districts to fight
with parents, said Marianna Bond, immediate past president of the Autism
Society of Greater Tarrant County. "He is encouraging school districts to
go in with an adversarial attitude. What he's encouraging is for the school
district to break the law," she said. "It's so contrary to what education is
supposed to be about."

Bond, who has two autistic children in the Birdville school district, said
most parents start out trusting the school district. But as they become
more educated about their legal rights and more frustrated by their
child's lack of progress, trust diminishes. "I am very, very cynical," said
one Tarrant County parent, who asked that her name not be used for fear
of retaliation against her child. She says school officials lied and
played power games at meetings. Carie McDonald of Carrollton said that
during three years of conferring with the Lewisville school district,
administrators told her little about the law. It wasn't until she met with
an advocacy group that she learned her rights and those of her 8-year-
old daughter, Amber. "When we figured all this out, all bets were off. We
were no longer these little puppets," she said. Since she was
placed in private school in 2001, Amber's IQ has nearly doubled,
McDonald said.

Advocates and lawyers encourage parents to be persistent with public
schools to win more services for their children. "It's an economic issue --
bottom line. And your job for your kid is to push them to the front of
the line," said Pete Wright, a lawyer from Virginia who instructed parents
at an advocacy conference last
month in Oklahoma.

By learning their legal rights, parents have a stronger hand, Wright and
others say. Laura Gibbs of Roanoke, whose 7-year-old daughter,
Summer, is autistic, said her relationship with the Northwest school
district improved after she studied the law. "I can remember my first ARD
meeting, sitting there thinking, 'I don't have any idea what they're talking
about,' " said Gibbs, who has attended more than 25 such meetings.
"They used so many acronyms, and you're afraid to ask because you don't
want to look stupid." She withdrew Summer from the district for a few
weeks and threatened to sue. Gradually, the relationship improved, Gibbs
said, and she obtained more services for her daughter. Now, she goes
into the meetings with a business mind-set.   

Staff Writer L. Lamor Williams contributed to this report.
Copyright 2003 Star-Telegram, Inc.

Thanks for sharing the article.  It's very sad, especially for the boy in the wheelchair.  It doesn't take a rocket scientist to figure out that a child in that situation would be emotionally vulnerable -- why not take the Mom's word for it, instead of waiting until problems became clearly visible at school?

 

Just wanted to add...this IS my lovely school district. JOY OH JOY!

The good news: both the Fort Worth & Keller newspapers have done several
exposes on the district, and on many families that are battling or have
battled the district. Lots of changes were made & continue to be made. I
can only hope they are situated in time to help us sooner rather than later.
So very disturbing, though, what I've seen has happened to many others.
What was startling in an article a few weeks back--the SD was not handling
children w/ diabetes properly. I'm thinking--how the heck do I expect them
to help us??? WISH US LUCK!

Well I am going to have to say that the education system sucks! My son gets a medical dx this friday and we have a team looking at him. Since we are only seeing a ped psych, OT, Speech, social worker, and dev ped..I made another appnt with a ped neuro to further back up the dx. Area ed has given him PDD possibly PDD NOS. She comes 1x a week (most of the time) for 1 hour. She is in his home setting so his stress is very low. So of course he is getting better. However, she is not there when I take him to get his pictures and becuase it is a new setting he threw a fit and smacked his head more than 50 x's and screamed like someone was pulling his toe nails out. I was thankful for jelly beans and his portable IPOD. If the photographer attempted to say something he freaked out more. While my other 2 children sat and got photos he finally stopped climbing at the door and calmed down 20 min later.

OHHHH he is getting better! They need to come hang out with us for a good few days to truley get a dose of the child that we are battling with everyday. They have no idea what it feels like to not beable to make your child smile for at least half the day instead we battle with them non stop. If anyone has good info on our rights please post.

 

http://www.star-telegram.com/news/story/200174.html

Posted on Mon, Aug. 13, 2007

Parents, schools are often at odds

By KATHERINE CROMER BROCK

Star-Telegram Staff Writer

Educating children with special needs is an expensive undertaking.

In the Keller school district, where students enrolled in special education make up 7.6 percent of the district's total enrollment, the budget for special education makes up 12.9 percent of total operating expenditures.

In the Fort Worth district, special education spending makes up 11.4 percent of the district's expenditures, or .9 million.

But more than money is at stake. Parents of children with special needs say they are often the only watchdogs making sure that their kids get the services that school districts are required to provide.

Many parents educate themselves about special education laws and push districts to comply, which can create an adversarial relationship.

Parents "have to keep fighting, and it's one of the hardest things to do," said Geraldine "Tincy" Miller of Dallas, a State Board of Education member who has worked for more than two decades to bolster and reform state laws and policies regarding dyslexia education and special education.

"The better-educated the parent becomes about learning disabilities, then she can go to the school and speak from knowledge," Miller said.

"I have seen school districts where their attitude is 'If I don't identify them, then I don't have to serve them.' They can drag it out for years, and the child gets older every year."

Heather Hughes, director of special education for the Keller district, said the dual system of diagnosing a child's disability creates confusion. A doctor's diagnosis of autism, for example, doesn't automatically translate into special education services for that child. School districts operate under a different set of federal and state diagnostic standards, Hughes said.

"There is a lot of misunderstanding," she said. "It doesn't matter what the label is, but what are those child's educational needs?"

Cindy Neverdousky, director of special education for the Fort Worth school district, said a parent can be a child's own worst enemy.

"When we come to the table, the No. 1 goal is what is best for the child," Neverdousky said. "Sometimes parents don't see the whole picture, they're so close to the problem."

The Fort Worth district hasn't had a due process hearing -- the last recourse of appeal before going to court -- in more than four years, something Neverdousky attributes to the district's efforts to work more closely with parents.

Forums are conducted four times a year so parents with children new to special education can ask questions and get information from the Fort Worth district. They are given a folder with every phone number they might need, along with articles and other resources.

Sam Peters vs. Keller

A pediatrician first suggested that Sam Peters was autistic when he was 15 months old. He hadn't said his first word, and he rarely pointed or gestured to indicate something he wanted. At 20 months, Early Childhood Intervention of Tarrant County made the determination that Sam has pervasive developmental disorder-not otherwise specified, or PDD-NOS.

The disorder falls under the umbrella of autism. Symptoms include impairment of social skills and communication.

When Sam turned 3, the Fort Worth school district was obligated to test Sam at his parents' request and, if necessary, provide help for him. But a district diagnostician determined that he wasn't autistic. His parents fought that ruling and sought other independent evaluations. Sam was diagnosed with PDD-NOS by the Child Study Center in Fort Worth and Mental Health Mental Retardation of Tarrant County.

Eventually, the district offered Sam assistance for a speech impediment and placed him in the preschool program for children with disabilities. His parents sent him to a private school instead. He began biting and scratching, disobeying his teacher and ripping up his classwork.

They decided to try another public school district and set their sights on Keller.

Jessica Peters; her husband, Jon; and Sam, now 5, moved to Keller in the summer of 2006 because of the district's reputation as the place to go for children with special needs.

"We could scrape together enough for rent," said Jessica Peters, 27, who is pregnant with her second child, a girl, due Oct. 2. They moved into a yellow house around the corner from the Keller district offices on Keller Parkway. It has less than 1,000 square feet for the growing family. But that's the sacrifice they chose to make for Sam's education.

"It didn't work out very well," she said with a tired sigh. "You think that the school district is there to help your child. That's not the case for Sam."

Keller placed Sam in a PPCD program while district special education experts evaluated his needs. He flourished in the four-student classroom, led by a teacher trained to work with autistic children.

But after a month, a district diagnostician called. Sam doesn't have autism, she said.

Keller denied the family's request for an independent evaluation, sending them straight to a due process hearing.

The Texas Education Agency appointed a Houston attorney to act as the hearing officer.

District officials had an attorney and special education experts to defend their stance.

The Peterses didn't have the money to hire an attorney, so Jon Peters' father, Jim, who had done union bargaining, represented them.

The hearing stretched over one full day in February and two in March.

The Peterses lost their due process hearing. Sam will not receive special education services in the Keller district when he enters kindergarten this month at Keller-Harvel Elementary School. Jessica Peters fears what his first year of school will bring.

"I don't know if he'll be able to prove how smart he is if he can't focus on one thing at a time," she said.

Now that the hearing has been resolved, Hughes, the district special education director, declined to comment on Sam's situation.

Peters said she has received advice from parents who have gone through similar struggles.

"Other parents have said to just let him fail for a year," she said.

"You can't take that kind of gamble with your child's education. I understand that they've got to cut every corner possible. But when it's your kid that's the corner being cut, it's hard not to take it personally."

Ryan MacKechnie vs. Fort Worth

The decor in Ryan MacKechnie's bedroom is fitting for any 10-year-old baseball addict.

Baseball caps hang around the window, and five bats rest in a stand by the door. His catcher's gear, baseballs, gloves, memorabilia and photographs of him with his team are displayed around the room, reminders of a life he will never have again.

As he sat on his bed, Ryan's hunched shoulders trembled, and his clear blue eyes were glazed from the pain medication he needed just to be able to walk around the house.

Ryan has syringomyelia, a little-known disease that occurs rarely in children. A cyst in the spinal column causes, among other symptoms, chronic pain, vision loss, incontinence and fatigue. Ryan's symptoms appeared more than two years ago.

The illness is not well-understood, even in the medical community. So explaining Ryan's disease and his everyday needs to the staff at Fort Worth's Tanglewood Elementary was a daunting task for his mother, Jennifer.

After Ryan's diagnosis in 2005, he spent the last six weeks of the school year at home.

He returned to school at the beginning of the 2006-07 school year in a wheelchair to alleviate the pain.

"We tried without the wheelchair," MacKechnie said.

But his classes were on the second floor, and after two days of climbing the stairs, Ryan could not get out of bed.

There were other problems, MacKechnie said.

Ryan's classroom was down the hall from the restroom. Life as an incontinent 9-year-old is hard enough, but being so far from the restroom made it terrifying.

He needed to drink water in the classroom to fend off dehydration. He got in trouble for not holding his pencil "at the ready" and for fidgeting in his seat because of the chronic pain. His teacher left him in the hallway while the rest of the class participated in gym class. His mother came to the school to tutor her son during that time.

When the school's elevator broke and two janitors were carrying her son up and down the stairs, MacKechnie had had enough.

"He was so embarrassed, he was crying, and he was red," MacKechnie said. "I said, 'This is unacceptable and inappropriate.'

"With Ryan, it's just about dignity. He's had everything else taken away."

Three weeks into the school year, MacKechnie was still struggling to set up an admission, review and dismissal meeting. Such a meeting involves a child's teacher, parents, and other educators or administrators to establish how to address the needs of a child in special education.

After the elevator incident, MacKechnie went up the chain of authority, calling the director of special education for the Fort Worth schools.

"Here these people are supposed to be helping my child, and I'm feeling like a bad guy for having to go over people's heads," she said. "But it's my job to protect him."

Small victory, big difference

Ryan was moved to a classroom across the hall from the restroom. MacKechnie sings the praises of Lori Taylor, Ryan's second fourth-grade teacher, who was supportive of Ryan and his family, even visiting him in the hospital.

Taylor understood Ryan's illness and watched for signs that he felt sick, but didn't treat him differently from any other student in her class, MacKechnie said.

"She has been our saving grace for Ryan," MacKechnie said. "She is one of the things that has kept Ryan going, and me going as well."

Despite how the school year started, MacKechnie believes that Ryan came out on top, thanks to her advocacy.

"I want my child to get what he needs," MacKechnie said. "I don't want any more than he deserves, but I don't want any less, either."

Tanglewood Principal Connie Smith said dealing with Ryan's illness was as difficult for the school as it has been for his family. He has an obscure illness, and teachers don't have much training in dealing with it.

"His mom was our best source," said Smith, who praised MacKechnie's involvement and positive attitude in advocating for Ryan. "I don't know how a child acts when they're at home. [Ryan's] a tough kid. He puts up a good front. We weren't seeing any of the things at school that Jennifer was describing at home."

Smith said that in most cases, switching classrooms is not the best solution for a child. In Ryan's case, she said, it worked out well, but it was not an easy decision and was made only after she was sure there was no other way to meet his needs.

"Ryan ended up having a wonderful, wonderful year," Smith said. "The school may have been a part of that, but that family could not have been any more supportive. That is a poster family for the way the system is supposed to work."

MacKechnie fears that every school year, she will have to re-explain the disease and its effects to Ryan's teachers and principals, and fight to get him in a room close to the restroom. A private school may be in Ryan's future.

"As he gets into higher grades, I think it's going to get harder," MacKechnie said. "I am willing to do whatever. Once he's older, he's not going to want me there, but I can't ask him to fight that battle."

I understand that they've got to cut every corner possible. But when it's your kid that's the corner being cut, it's hard not to take it personally.

Advocating for your child

Mika Bradford, as director of community outreach for the North Texas chapter of Families for Effective Autism Treatment, helps parents who are trying to work with school districts on behalf of their children. She offers advice for parents trying to advocate for a child.

Educate yourself. Study special education laws and procedures.

Focus on facts. Be analytical. Gathering concrete data such as test scores can help parents and districts address a problem.

Leave emotions at home. "If you go into these meetings, and you're not prepared and you're an emotional wreck, then you're not going to be taken seriously," Bradford said.

Don't make it personal. It's about the situation, Bradford said, not the staff. Be honest, firm and to the point, but be respectful.

Be realistic. It's important to offer realistic suggestions of how problems may be solved. "I have never asked the school district or their personnel to implement something that I would not implement in my own home," Bradford said.

By the numbers

795 - Due process hearings in the state between August 1994 and December 2005

30 - Due process hearings in Tarrant County

3 - Hearings won by the family, not the school district

6 - Hearings in the Grapevine-Colleyville district

5 - Hearings in the Keller district

1 - Hearings in the Fort Worth district

Source: Texas Education Agency

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