Schools, Services and Supports For Everyone
Two articles in the news today both point out discrepancies in services and support for autistic children who are from poorer and minority families.
Are poorer school districts less likely to accept an autism diagnosis, in view of the greatest cost to the district of educating an autistic child? An editorial in today’s Newsday makes this point:
Advocates for people with autism argue that some districts, especially those in relatively poor areas, often refuse to accept the diagnosis, shunting autistic children into a general impairment category instead. This is evidenced most starkly in what appears to be a discrepancy between the relatively large numbers of autistic students in wealthy districts and the small numbers in poorer districts.
In Nassau, for instance, the Roslyn school district reports 13 autistic students per 1,000, while Valley Stream shows just one per 1,000. In Suffolk, Half-Hollow Hills has 14.5 per 1,000, and Brentwood reports two. Autism experts say it’s not credible that the incidence of autism would vary so much, regardless of socio-economic differences between the communities.
It costs school districts on Long Island approximately $10,000 to educate a regular student and $23,000 per special needs children; I’ve seen higher figures than the latter to educate autistic children in New Jersey. The Newsday also notes that affluent parents who can afford to pay for legal representation “generally take a much more aggressive stance to securing services and placements for their children.”
An article in today’s Press-Enterprise (Southern California) also notes that poor and minority children with autism access, and therefore get, fewer services,
According to the Southwest Autism Research and Resource Center, “Latino and black children are typically diagnosed two to five years later than whites.”
In the Latino culture, families are often reluctant to seek help outside the home, have difficulties with transportation and child care and are less likely to fight for services, said Jose Fuentes, a clinical neuropsychologist in Loma Linda who runs a behavioral intervention program for children with autism.
Jan Blacher, founder of SEARCH Family Autism Resource Center and a professor in the University of California at Riverside’s graduate school of education, is researching how cultural differences affect the way families deal with autism. Jose Luis Hernandez and his wife, Gloria, started the Grupo de Autismo Angeles as a support group for Latino families with autistic children; their son was diagnosed over ten years ago. Hernandez notes that, at that time, he and his wife could only find one pamphlet about autism in Spanish, with outdated information.
Hernandez, a restaurant cook, teaches families to be more assertive with authorities.
“When you go to the school district, you go to the psychologist, the teachers, the principal; you think they have authority so you respect them. If they say no, you say, ‘Thank you, you’re right,’ because they have a higher level of education,” he said. “We try to educate parents to know in the U.S. … the laws protect your kids, but you have to know your rights.”
Many Latino families are hesitant to get outside help because in Mexico, there is often shame with having a disabled child, Hernandez said. It can be hard to adjust to a culture that supports families dealing with disabilities, he said.
Hernandez said he also has pushed for more involvement of fathers when it comes to autism because in Latino families, women are responsible for the children.
Ten years ago, when he attended an autism conference at the urging of his wife, Hernandez was one of only two men in a crowd of 300.
Where I live in New Jersey, the largest autism organization, COSAC lists many resources in Spanish from a link on its COSAC. My college offers courses in “Spanish for Health Professionals” and I’m very glad about this—-it is hard enough for any parent with a yet-undiagnosed child to explain to a doctor about their concerns and fears, and all the more so when there is a language barrier. These are small steps to make a difference in helping autistic children and their families and I’m hopeful more can and will be devised.
14 opinions for Schools, Services and Supports For Everyone
Marla
Nov 11, 2007 at 5:25 pm
I do believe we were pushed away from an autism diagnosis for years in Indiana. Jersey seemed to be very accepting and open to an autism diagnosis. Their records and services helped us get better support once returning to Indiana. Even though once back in Indiana our services were gradually dropped, claiming they were not necessary. We were members of COSAC when we lived in Jersey. For us there have been great differences between states. If it was not for missing my family so much I would still be in Jersey taking advantage of their schooling and supports.
Karen
Nov 11, 2007 at 5:43 pm
This doesn’t surprise me but it certainly saddens me. I am so lucky to live where I do (SF Bay Area) and also lucky to have the education that I have and a highly educated circle of friends (my closest friend is a sp ed teacher!) Learning how to advocate for your child is hard, and I’d imagine even harder so when also dealing with cultural and language barriers.
When I used to work as an aide in sp ed (before I had kids), I knew a family who spoke English as a second language. Their child desperately needed speech services (he was autistic and deaf) but had no idea how to advocate for him. It was heartbreaking to see; his so-called speech therapist would “observe” him once a week during snack time. THAT was his speech service.
Sorry for the tangent. It’s sad that you practically need a law degree to know all the things you should/could be doing to secure the appropriate services for your child.
livsparents
Nov 11, 2007 at 7:05 pm
The Newsday also notes that affluent parents who can afford to pay for legal representation “generally take a much more aggressive stance to securing services and placements for their children.”
Ironic that parents who can afford services are instead using lawyers to get services they can already afford. I guess lawyers as well as therapists need to eat…
Regan
Nov 11, 2007 at 7:41 pm
AutismDiva also noted *interesting* distributions in the California Regional Centers depending on the financial demographics of the residents.
UCR! My alma mater–I am so pleased to see them doing this study on under-represented groups, which are a large constituency in Riverside-San Bernardino. Go Highlanders!
Kristina Chew, PhD
Nov 11, 2007 at 10:03 pm
I remember that post from Diva—-if you find a link to it (or if Autism Diva herself is reading this), please send in the link!
Kristina Chew, PhD
Nov 11, 2007 at 10:07 pm
Marla, my husband had some job offers in Indiana(in South Bend) and, while he decided not to take those jobs for other reasons, we also just didn’t know what kinds of services might be offered. I just got back from Atlanta and talked to parents from Georgia and Texas—-things really seem to vary from state to state.
Karen, I have to undergo a complete re-education to help Charlie! A J.D. would have been nice to have…..
KimJ
Nov 11, 2007 at 10:11 pm
When my son was first assessed for autism, 5 1/2 years ago, the literature read that parents of autistic children were mostly affluent and highly educated (college+).
In Northern CA, there were quite a few people that believed autism was caused by smart people breeding(Silicon Valley computer geeks).
Some of the wealthiest autism parents managed to obtain gov’t funded therapies, grants and healthcare. I never understood it.
Maria
Nov 11, 2007 at 10:13 pm
I think we should be careful in assuming that parents who hire a lawyer can afford to pay for the appropriate services and placements they are seeking for their children. These services, when they are available, are expensive and when multiplied by the hours required, are prohibitive for most.
peony
Nov 11, 2007 at 11:50 pm
I agree Maria..Many parents I know who hired lawyers to secure appropriate education placements for their child could not afford to pay for the appropriate services themselves. Most people would not be able to pay privately for one-on-one instruction, ST, PT, and OT for so many years.
Kristina Chew, PhD
Nov 12, 2007 at 12:05 am
Yes, thanks for pointing that out Maria—-I’ve certainly read stories of families taking out a second mortgage and more to pay for services and therapies.
Regan
Nov 12, 2007 at 1:27 am
The Diva post:
Monday, July 16, 2007
Malibu and Compton: Compare and Contrast
http://autismdiva.blogspot.com/2007/07/malibu-and-compton-compare-and-contrast.html
Club 166
Nov 12, 2007 at 3:10 pm
Some school systems are better than others, but I think that the majority of school systems attempt to deny diagnoses and supports to children. It’s just that the parents in the better off districts have the wherewithal to fight back.
This is combined with the fact that minority children (especially boys) that “act out” are more likely to be perceived as “bad” rather than as being developmentally disabled, when compared to their white peers.
Joe
mom
Nov 13, 2007 at 12:30 am
Why does there seem to be more concern that the poor are being under-diagnosed, than that the wealthy are being over-diagnosed?
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Nov 17, 2007 at 4:34 pm
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