Poorer autis­tic chil­dren face a harder strug­gle

Los Angeles Times - - The State -

[ cacy, sees the loss in chil­dren who have fallen through the cracks for years. “Some of th­ese older kids are bump­ing up against their last chance to learn to read,” says Nolte. “Schools are in this night­mare phase. They have young kids com­ing in who can ben­e­fit a lot. But they also have kids who are over the hill, big kids, 180 pounds or more, who have no way of com­mu­ni­cat­ing.”

Stay­ing out of school, as Shi­ane has done, is never sup­posed to hap­pen, says Glo­ria Lopez, di­rec­tor of in­struc­tional ini­tia­tives for the Los An­ge­les Uni­fied School Dis­trict. Be­cause of con­fi­den­tial­ity laws, Lopez couldn’t com­ment on a spe­cific case. But when par­ents and the dis­trict don’t agree, the law re­quires a due-process hear­ing to settle the dif­fer­ence.

Un­til an agree­ment is reached, the stu­dent is sup­posed to con­tinue at­tend­ing the last school agreed upon. Lopez says it’s rare that par­ents de­cide to keep their chil­dren home rather than send them to school, even one they be­lieve is not ap­pro­pri­ate.

For Mur­phy, get­ting Shi­ane ready for school as early as 5 a.m. for long bus rides be­came too gru­el­ing a daily fight.

Martin helped Mur­phy nav­i­gate this latest ed­u­ca­tional hur­dle. As an at­tor- ney, she took on Shi­ane’s case, ac­com­pa­nied Mur­phy to a me­di­a­tion with the school dis­trict, and helped iron out an agree­ment for Shi­ane to en­roll at the Sun­rise School in Sher­man Oaks, a spe­cial­ized day school for chil­dren with dis­abil­i­ties.

The new agree­ment with the dis­trict al­lows for Shi­ane to be picked up in a cab or a van, at dis­trict ex­pense, with only the driver and an aide in the ve­hi­cle.

Such vic­to­ries can seem rare in poor com­mu­ni­ties. When one of Martin’s South-Cen­tral au­di­to­rium au­di­ences heard that black chil­dren were di­ag­nosed about a year and a half later than white chil­dren, there were mum­bles of “More like five years around here” and “Add three years to that if you’re in South-Cen­tral.”

Im­mi­grant kids with autism or learn­ing dis­abil­i­ties, Nolte says, are of­ten over­looked be­cause teach­ers think they have a lan­guage prob­lem. African Amer­i­can chil­dren, he says, are of­ten dis­missed as hav­ing be­hav­ioral prob­lems.

Try­ing to bridge those gaps has be­come Martin’s avo­ca­tion. Her son has re­ceived the pre­sumed gold stan­dard of treat­ment and learn­ing op­por­tu­ni­ties since he was di­ag­nosed with autism at age 2. The school dis­trict has paid for the bulk of it since he was 3, the age at which dis­tricts be­come re­spon­si­ble un­der the fed­eral In­di­vid­u­als With Dis­abil­i­ties Ed­u­ca­tion Act, en­acted in 1975 and most re­cently re­vised in 2004. He re­ceives speech, oc­cu­pa­tional and be­hav­ioral ther­apy, has an aide at his side all day in his main­stream class, and gets ad­di­tional help and tu­tor­ing on Satur­days.

For Martin, the fight to help other fam­i­lies is a pay­back for the breaks she got as she made her way out of her own hard­scrab­ble start in a St. Louis hous­ing project. She was raised by her para­plegic grand­mother, who was house­bound, largely be­cause the Amer­ica of the 1970s had few wheel­chair ramps or side­walk cut­aways.

“Grow­ing up with some­one who was dis­abled def­i­nitely made me sen­si­tive,” she says. She knows the hur­dles faced by fam­i­lies with autism. “If you have money, you get an at­tor­ney to go with you and you walk away with a full com­ple­ment of ser­vices, 30 hours a week of spe­cial ser­vices. If you live in South­Cen­tral, you go in alone, the cen­ters will of­fer two hours of spe­cial ser­vices, and peo­ple leave say­ing ‘Thank you. Thank you very much.’ ”

The dis­trict has ex­panded out­reach pro­grams to par­ents in poor com­mu­ni­ties, says Pat Grayson-DeJong, autism spe­cial­ist at the LAUSD. The dis­trict holds an an­nual spe­cial-ed­u­ca­tion fam­ily re­source fair to ed­u­cate par­ents, and of­fers $5,000 bonuses for cre­den­tialed spe­cial-ed­u­ca­tion teach­ers to work in un­der­served ar­eas. Those teach­ers get an ad­di­tional $5,000 bonus if they stay for three years.

“The pic­ture is chang­ing, and that has a lot to do with par­ents get­ting on board and say­ing, ‘Some­thing has to be done,’ ” Grayson-DeJong says. “There’s so much more to­day than just a few years ago, but there’s a long way to go.”

In­formed parental needling is Martin’s forte, and she’s happy to teach it. “When I first gave a pre­sen­ta­tion in South-Cen­tral L.A., it crys­tal­lized what I al­ready knew about dis­par­i­ties,” she says. “It was ap­par­ent that there were so many fam­i­lies that didn’t even know what early in­ter­ven­tion looked like.”

Martin arms par­ents with check­lists and strate­gies. She gives peo­ple sam­ple let­ters re­quest­ing eval­u­a­tions, re­im­burse­ment, fol­low-up meet­ings.

She also gives them words, force­fully phrased, a kind of as­sertive­ness train­ing 101. “Use the word ‘ap­pro­pri­ate.’ It’s your job to say, ‘I see de­lays in speech. There­fore, speech ther­apy is ap­pro­pri­ate.’ ”

Yudy Mazarie­gos, who took two buses to get to a Spe­cial Needs Net­work meet­ing at the King/Drew Mag­net High School au­di­to­rium, has mem­o­rized many of those words so she can bat­tle on be­half of her 13-year-old son. “I used to say, ‘I want.’ I learned to say, ‘I need.’ I know I have to pre­pare my case as a lawyer,” she says. “And we have to learn to use the words ‘I have a lawyer.’ ”

Martin says that in the­ory, the ed­u­ca­tional ser­vices are avail­able to ev­ery­one since the 1975 fed­eral law. But school dis­tricts are not re­quired to tell par­ents what is avail­able. “I rep­re­sent fam­i­lies who have never heard of any of it,” she says. “No­body is ob­li­gated to tell any­one about any­thing. So how would you even know th­ese ser­vices ex­ist?”

She is do­ing her best to make sure peo­ple across the so­cioe­co­nomic di­vide know as much as they can about autism.

“Any­one who wants help has to go through hell to get it,” says Martin. But the trip can, for some, pay off.

In Marty’s sec­ond-grade class­room, his teacher asks the kids to turn to Page 49 of their work­books. With his aide’s help, Marty finds Page 49. Then the teacher asks the class what hap­pened to the bed in the pic­ture, the bed with the heavy trunk­ful of books on top. Marty’s hand shoots up. Called on, he says, “Bro­ken.”

His mother, seated on a cor­ner chair so small her long legs fold up nearly to her chin, looks awestruck.

Shi­ane may never make even that much progress.

“There’s never a time when peo­ple can’t learn,” UC Davis’ Rogers says. “But a 13-year-old who is not yet ver­bal doesn’t have the same chance of de­vel­op­ing lan­guage as a 3-year-old. They’ve lost a lot of time, and a lot of wiring.”

Shi­ane, fi­nally back in school af­ter nearly a year, has missed a lot. “I didn’t have the knowl­edge that I have now or I would have pushed harder,” says Mur­phy. “I spent 10 years find­ing th­ese things out, and now I hope and pray that it’s not too late.”


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