Verdict Hailed Victory for Disabled Kids/ LD Students Settle Suit

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February 2, 2000 Search www.feat.org/search/news.asp

Also: * LD Students Settle Class Action Suit Over " High Stakes Testing "

* Long-Term Plans Needed for Disabled

* Parents Raising Funds to Save Imperiled Autism ABA Program

Verdict Hailed as a Victory for Families of Disabled Children

[by Tony Blais, Edmonton, Canada.]

http://www.canoe.ca/EdmontonNews/es.es-02-01-0022.html

An Alberta Court of Appeal decision yesterday on an autistic boy's

right to attend a regular school class was hailed as a victory for families

of disabled children.

The Appeal Court panel said it was a moot decision because the

Wetaskiwin boy in question has been back in mainstream classes since

September 1998.

However, the judges upheld an earlier ruling saying it should be

decided in court as to whether parents have the right to go to court to

fight a school administration ruling rather than through a school board

hearing process.

" It leaves it open for parents in similar situations to go to the

courts, " said Penny Frederiksen, who represented 16-year-old Grimm's

parents, and Ken.

" It's a human rights issue, " said Frederiksen.

Grimm, who said her son is flourishing in Grade 10 this year,

was ecstatic about the ruling. " (Yesterday) was more for other parents, "

said Grimm. " I want school boards to look at the children, not at

programming and funding.

" I want them to do what's right for the kids, all the kids, equally

across the board, " she said. The Grimms had lost a 1998 court battle to have

immediately put back into regular classes after school administrators

had ruled in the summer of 1997 he would have to go into a special learning

class.

The judge had refused, but had said the two sides could go to trial on

whether parents could battle a school administration ruling in court as a

human rights issue rather than through a school board hearing process.

The school board appealed that decision although they agreed to let

resume regular classroom schooling in September 1998.

And the school board's appeal, which was done with the backing of the

Alberta School Boards' Association, was dismissed yesterday.

Dr. Hal Kluczny, the superintendent of the Wetaskiwin Regional School

Board, said yesterday he was unsure how the ruling will affect other cases.

" In terms of the legality of it, every situation is certainly unique, "

said Kluczny. " We don't know if (the Alberta School Act) can be bypassed. "

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LD Students Settle Class Action Suit Over " High Stakes Testing "

Students Settle Class Action Lawsuit Against Oregon -

Case Has National Implications for High Stakes Testing

Portland, Ore., PRNewswire - Lawyers for children with learning

disabilities today announced the settlement of a class action lawsuit

against the Oregon State Board of Education, which alleged that Oregon's

assessment system discriminated against learning disabled students.

According to lawyers for the plaintiffs, both the expert report and

the settlement are unprecedented and have national implications.

A 42-page report by a panel of experts, containing 30 recommendations

to ensure that students with learning disabilities are treated fairly on

high stakes tests, formed the basis of the settlement of the class action.

The expert panel's report is part of Disability Rights Advocates' new

publication, " Do No Harm: High Stakes Testing and Students with Learning

Disabilities. " The report analyzes the issues surrounding high stakes

testing and students with learning disabilities, including the legal

implications of such tests and the safeguards needed to protect the rights

of learning disabled students.

For information about this case, " high stakes testing, " accommodations

and modifications, go to

http://www.wrightslaw.com/law/news/OR_settlement_dyslexia.htm

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Long-Term Plans Needed for Disabled

[Opinion by Ellie Tesher of the Toronto STAR.]

http://www.thestar.com/apps/AppLogic+FTContentServer?pagename=thestar/Layout

/Article_Type1 & c=Article & cid=980915566319 & call_page=TS_Opinion & call_pageid=9

68256290124 & call_pagepath=News/Opinion <-- address ends here.

Gwen Caudle feels she's had her rights as a mother taken away.

McCarney says the system to help his son has his family going in circles and

the boy's situation getting worse.

Last Tuesday, I described some of the mess that has been allowed to

develop through the Ministry of Community and Social Services program

responding to families with severely disabled children. No one who talks to

these overwrought parents or sees their kids can help but feel compassion

and there are certainly ministry workers and supervisors who have tried

their darndest to help them.

But two main policies of the Mike government have conspired to

create more problems than they've solved: The obvious one is cutting the

“special needs agreement” program and not replacing it with at least equal

money as demands were increasing or allowing agencies to deal with overall

needs of a family's case. The other is the motherhood statement that

children's services should be aimed at keeping them at home - a fine

sentiment for those of us who don't have to give up a job, care for our

other children, risk losing our marriages and our health.

It has led to limited, patchwork help for families in turmoil. The

agencies they turn to are cash-strapped and offer only short-term solutions.

Parents must keep coming cap in hand begging for more, renewing contracts,

appealing decisions, all with a mass of requisite paperwork that many can't

handle under the load of constant care for their kids. Plus the money

offered - $8- to $10-an hour for respite care instead of the $15 to $25 it

costs, for example - ends up useless.

Minister Baird has said he'll “do the right thing” and the

families that arrive with legal counsel have had their needs quickly met.

But the policy problems remain and so does the agony for those who can't

afford a lawyer, who can't speak English and who aren't aware the onus is on

them to come forward even though they've been scrambling for help for years.

Gwen Caudle of Mississauga felt forced to give up custody of her

daughter , 10 - a wrenching decision that has her feeling “like a

failure.” was born with a rare genetic birth disorder and

developmental problems.

She doesn't speak, behaves like a 2-year-old, throws tantrums, yet is

already of hefty adult build. She can't be trusted alone not to run away,

turn on the stove, tear apart the house. Her mother says her marriage broke

up, largely over the strain.

's behaviour is better controlled in a specialized group home

with 24-hour staff who have also managed to keep her in a school program.

The agency that found the placement said the only way to fund it was through

the Children's Aid Society, if was put in its custody. The ministry

has ended CAS involvement in these cases but Caudle remains in limbo. By

law, she has to go to court and prove she's capable of caring for to

win back custody; yet, without the group home funding she was denied, she

can't handle her daughter's needs.

The McCarney family of Burlington was able to regain custody of their

son Graham, 11, during a trial period when the CAS foster home in which he

was placed couldn't manage him. Graham has behaviour disorders and rages

associated with Tourette's syndrome which requires medication and

monitoring.

Whenever the family finds a situation where Graham does well, they're

told it's time for him to move on. , who has taken time off work to

spell off his wife after she stayed home, recounted a litany of moves for

the boy: in-hospital assessments, group home day program, foster care,

residential group home, back home, all within months. One place where he had

settled in gave up his bed as soon as he improved.

Now the family has been promised funds for a child worker to help at

home but no agency has found such a person. The family felt it had no

alternative but to hire a lawyer.

These cases and hundreds of others need long-term plans, not quick

fixes or private deals. They're expensive but so are the lawsuits. Last

year, the parents of some autistic children mounted a class action for

access to treatment. The province settled and paid up.

The government is remiss in its legal duty to these kids. It should

fix this before it is forced into court.

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* * *

Parents Raising Funds to Save Imperiled Autism ABA Program

[by Barbara Youngerman Meyer in the Post-Gazette, Pittsburgh.]

http://www.post-gazette.com/regionstate/20010130autism3.asp

Gail and Craig Zawada of Kilbuck would do almost anything to help

their daughter, Avery, who was born with autism -- a severe neurobiological

disorder that affects one in 500 children.

Lalonde, 5, who is autistic, plays under the supervision of his

mother, , at their home in Cranberry.

" Avery's natural inclination is to spend most of her time staring into

space or wrapped up in the living room drapes, " her mother said. " It's very

hard to pull her out of herself, into the world with the rest of us. " So

far, the Zawadas have given up a home they loved for 3-year-old Avery's

sake. Last summer they sold their house in Cleveland to come here because

they wanted their daughter to be treated at The Pittsburgh Center for Early

Intervention.

The center uses an intense, 30- to 40-hour-a-week, one-on-one behavior

modification program for treating autism. The therapy, developed by

psychologist Ivar Lovaas, is controversial and has critics as well as strong

supporters wherever it is used.

Many parents, like the Zawadas, believe strongly in the program.

" My husband and I are convinced that this therapy ... has the best

track record for getting kids like Avery out of the confines of their homes

into the mainstream of life, " Gail said.

But the Zawadas may have to move again. The Pittsburgh Center for

Early Intervention, which has an annual budget of about $800,000, is in

financial trouble and could go out of business.

" At this point we're counting on donations to stay afloat, " said Dr. Patti

Metosky, 42, a psychologist who heads up a staff of 17 therapists at the

center.

The Zawadas agree that they will relocate to another state if that's

what it takes to keep Avery in a Lovaas-based program.

" We don't want to move but we will, " Avery's mother said.

To avoid pulling up stakes again, the Zawadas have borrowed money to

help fund The Pittsburgh Center for Early Intervention. So has Metosky and

several other families besides the Zawadas.

and Dr. Ron Lalonde of Cranberry, whose son, , is one of

25 children served by the center, took out a home-equity loan.

" All together, we've raised about $68,000 as of the end of January.

But we need more. Our goal is $100,000, " Lalonde said.

The center was established in 1995 after Metosky, formerly a clinician

at Children's Hospital in Oakland, finished training under Lovaas at his

headquarters in Los Angeles.

The center lost its first home at Allegheny General Hospital not long

after the Allegheny Health, Education and Research Foundation, the

hospital's parent, filed for bankruptcy.

It lost its second home at Southwood Psychiatric Hospital in Upper St.

Clair last fall when Southwood asked the center to chip in 20 percent of its

income to help cover hospital maintenance and cafeteria costs.

" We couldn't do that, " Metosky explained. " We are a nonprofit agency,

funded through insurance premiums, private foundations and school districts.

We don't make 1 percent extra, let alone 20 percent. In fact, we usually

finish the year in the hole. "

The second move cost the center about $100,000. There were computers

and office furniture to buy, rent and security to pay, plus the expense of

purchasing stationery with the center's new address, McKnight Park in Ross.

In November, the center sponsored a Bowl-a-thon to raise money. At

Easter time, Lalonde said, she and other parents will sell candy.

" My , who is 5, has made amazing progress through the Lovaas

method at The Pittsburgh Center for Early Intervention. I think we'll be

able to send him to regular kindergarten next year. " The Lalondes' son will

have to be accompanied by an aide.

" But the fact that he can be mainstreamed at all is mind-boggling, "

Lalonde said. " Many autistic children end up in institutions. " Autism, which

is more common than Down syndrome or cystic fibrosis, is a lifelong

disability with no known cure. Usually, children are not diagnosed as

autistic until they reach 2 or 3 years old.

Zawada explained that while most children are natural-born students,

autistic children resist learning. She said she sees the difference between

her 18-month-old son and Avery.

" Because Hunter is normal, his brain is going constantly. He wants to

figure out the world he's living in. All on his own, I see him 'getting it.'

But with Avery, it's not like that at all. We have to insist that she pay

attention. "

Lovaas-based therapy emphasizes repetition and positive reinforcement.

Children are rewarded enthusiastically when they sit in a chair

without fidgeting or to sort their toys into categories.

Rewards consist of lavish praise, big smiles or candy, " though we try

not to give Avery too many sweets, " Zawada said. " She's just as happy with

being told how wonderful she's done. " Critics of the Lovaas method said it's

aversive because teachers force the autistic children to sit still and pay

attention, commands that often upset the children.

When he originated this therapy, Lovaas advocated using physical force

and punishment to stop some behaviors. But he abandoned these techniques 20

years ago. Now, the therapy focuses on positive reinforcement for correct

behaviors and answers -- such as being allowed to play with a desired toy,

getting a hug or smile or even a treat.

Critics complain that the therapy is so structured that the children

sometimes become like robots reacting only to specific commands.

ph McAllister, a psychologist who is director of the Psychological

Services Department at the Institute in Sewickley, said Lovaas should

be credited for raising awareness that children can be recovered from

autism.

But McAllister said other methods that don't receive as much publicity

are also successful. And, while he acknowledges that Lovaas and similar

therapies may help some children, he believes they aren't appropriate for

all autistic children.

The Pittsburgh Center for Early Intervention (given that name because

experts agree early intervention, preferably before the age of 8, is

crucial) is the only local agency that uses the Lovaas method exclusively.

Other agencies and schools, such as Pathfinder School in Bethel Park,

use a combination of therapies to treat autism.

" Because that's what we think works best, " said Dr. Cheryl Fogarty,

Pathfinder's principal. " Lovaas is good, but so are other methods. " Neither

the Zawadas nor the Lalondes, however, said they were willing to switch.

" Thanks to what we've learned through the therapists, my husband and I

are able to help Avery, too, " Gail Zawada said. " And by helping Avery we

help ourselves. It is not easy living with an autistic child, a child who

tries her best to ignore you and everyone else in the world, a child who

responds to any stimulus by screaming or banging her head on the floor. It

can turn a family upside down. "

More information about the Lovaas method or about The Pittsburgh Center for

Early Intervention can be obtained by calling Lynn Guzik, at .

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presented by Unlocking Autism - www.UnlockingAutism.org

April 25-27, 2001 in Washington, D.C.

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