Stu­dents’ rights ver­sus lim­ited means

Ap­pro­pri­ate ed­u­ca­tion is the law — but with more autis­tic chil­dren, schools are at a loss.

Los Angeles Times - - The State - By Susan Brink

The pub­lic school en­roll­ment of autis­tic chil­dren, whether born into priv­i­leged or im­pov­er­ished cir­cum­stances, has gone from a trickle to a flood. Their le­gal rights are crash­ing up against strapped school bud­gets.

Un­der two fed­eral laws — the In­di­vid­u­als With Dis­abil­i­ties Ed­u­ca­tion Act and the Re­ha­bil­i­ta­tion Act, both passed in the 1970s and re­vised over the years — all spe­cial-needs chil­dren, in­clud­ing those with autism, are en­ti­tled to free and ap­pro­pri­ate pub­lic school ed­u­ca­tions in the least re­stric­tive en­vi­ron­ment. And, science shows, the sooner chil­dren with autism get treat­ment, the bet­ter their odds of speak­ing, read­ing, learn­ing and even­tu­ally liv­ing in­de­pen­dently.

A break­through dis­cov­ery, re­leased Feb. 18 in the on­line pub­li­ca­tion of the jour­nal Na­ture Ge­net­ics, could mean that some­day med­i­cal science might pin­point the dis­or­der in in­fancy, or even be­fore birth. Re­searchers homed in on the genes be­hind autism, putting an early DNA test within reach.

But to­day, it’s rare for a child to be di­ag­nosed be­fore age 2, even in the best of cir­cum­stances. Five years and one month is the mean age at which chil­dren with autism are di­ag­nosed, ac­cord­ing to an April 2006 study in the Jour­nal of De­vel­op­men­tal and Be­hav­ioral Pe­di­atrics.

That’s a full 13 months, on av­er­age, af­ter a child is first brought for eval­u­a­tion by a qual­i­fied pro­fes­sional, says study au­thor Lisa Wig­gins, a be­hav­ioral sci­en­tist with the Cen­ters for Dis­ease Con­trol and Pre­ven­tion.

Of the 115 chil­dren in the study, a quar­ter were not di­ag­nosed un­til they en­tered school — and even then, it was not the first or­der of busi­ness in kinder­garten. Those chil­dren were di­ag­nosed at an av­er­age of 6 years and 2 months.

The pic­ture is even worse for some mi­nor­ity chil­dren. The av­er­age age of di­ag­no­sis for a black child with autism, ac­cord­ing to a De­cem­ber 2002 study in the jour­nal Amer­i­can Academy of Child & Ado­les­cent Psy­chi­a­try, was nearly 8; for a Latino child, about 71⁄ 2; and for a white child, about 61⁄ 4.

The av­er­age an­nual cost to ed­u­cate an autis­tic child in Cal­i­for­nia is $11,907. School dis­tricts across the coun­try, many strug­gling with the ba­sics of teach­ing all chil­dren to read, write, add and fig­ure out where Ohio is on a map, are stymied by the cost of spe­cial ed­u­ca­tion.

In the 2003-04 school year, for ex­am­ple, the Las Vir­genes Uni­fied School Dis­trict spent al­most $900,000 in le­gal fees, much of it to re­solve one autism-re­lated case that went be­fore L.A. Su­pe­rior Court, ac­cord­ing to a 2005 re­port pre­pared by the Cal­i­for­nia Assn. of Sub­ur­ban School Dis­tricts.

In tiny Ojai, with 40 autis­tic stu­dents in its pub­lic schools, the dis­trict spent $400,000 in 2004-05 on autism-re­lated le­gal costs, the re­port found. The col­li­sion of lim­ited school bud­gets and grow­ing num­bers of chil­dren with spe­cial needs is pro­duc­ing not only costly law­suits, but also de­lays in treat­ment and hard feel­ings all around.

“It turns de­cent peo­ple into ogres,” says state Sen. Don Per­ata (D-Oak­land), a for­mer high school teacher who, with As­sem­bly Speaker Fabian Nuñez (DLos An­ge­les), formed a task force to pro­vide an ac­cu­rate statewide pic­ture of autism.

“We’ve seen school sys­tems us­ing ev­ery trick in the book, ev­ery in­ter­pre­ta­tion of the law, to avoid hav­ing to ac­cept fi­nan­cial re­spon­si­bil­ity for th­ese chil­dren,” Per­ata says.

For Pat Grayson-DeJong, an autism spe­cial­ist at L.A. Uni­fied School Dis­trict, her job, and pas­sion, is to do just the op­po­site: Get chil­dren the ed­u­ca­tion and ser­vices they need as soon as pos­si­ble.

Her autis­tic son is 38 now, and DeJong is de­ter­mined to help make life bet­ter for to­day’s par­ents and autis­tic chil­dren than it was for her fam­ily.

“I re­mem­ber think­ing that if some­one would just lis­ten to me, if we could just get some help, he could make gains,” she says of her son. “I con­tinue to see kids, es­pe­cially in ur­ban ar­eas, who some­times don’t get di­ag­nosed un­til they’re school-age. We’re mak­ing progress, but it’s very slow.”

But she agrees the fi­nan­cial bur­den is be­com­ing over­whelm­ing. “This dis­abil­ity is cost­ing our dis­tricts more than any other dis­abil­ity. Ever,” she says.


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