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Racial, Socioeconomic Disparities Alleged In Autism Spending

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(MCT) — California lawmakers and advocates for children with autism assailed the state Department of Developmental Services during a hearing Monday over the deep racial and ethnic disparities in how it spends money on the disorder.

“Families that are already the most disadvantaged get the least,” Martha Matthews, an attorney for the advocacy group Public Counsel, testified before a panel of legislators in Sacramento. “This is exactly the opposite of what it should be.”

State Sen. Darrell Steinberg, who heads a committee on autism, called for legislation to provide greater accountability in the $4-billion-a-year entitlement program for people with developmental disabilities. Autism now accounts for about a quarter of the 252,000 people in the state system and 45% of all new disability cases it accepts. Budgets have not kept pace.

Steinberg ordered the hearing in response to articles in The Times documenting how obtaining help for an autistic child can require waging battle against the gatekeepers of state services. Parents with the time and resources to fight receive significantly more, resulting in enormous racial and socioeconomic disparities.

It is not uncommon for autistic children from affluent families to receive 25 hours a week of one-on-one behavioral therapy. Advocates for poorer families, on the other hand, said parents aren’t necessarily even told what public services are available.

Matthews recounted the case of a severely autistic 6-year-old boy whose parents, a laborer and a seamstress who speak only Spanish, asked for individual behavioral therapy. The request was denied, despite a doctor’s insistence that it was necessary. Instead, the state provided a month’s supply of diapers, bus passes and 10 group classes in behavior management.

“This is such a hellish nightmare,” state Sen. Mark Leno responded.

In its December series, The Times found that for autistic children ages 3 to 6 — a critical period for treating the disorder — the Developmental Services department spent an average of $11,723 per child on whites in 2010, compared with $11,063 on Asians, $7,634 on Latinos and $6,593 on blacks.

“Black and brown children are discriminated against,” testified Areva Martin, a Los Angeles lawyer who runs the Special Needs Network, which advocates for poor minority children. “Parents should not be expected to sell their homes, quit their jobs and relocate to access services.”

State money for the developmentally disabled flows to service providers through 21 nonprofit regional centers, which decide whether a child has a qualifying condition and what services to provide. Services are free for life, regardless of a family’s means. In principle — but not in practice — everybody has the same opportunity for help. Regional center officials testified that the state budget crisis has worsened long-standing inequities.

Harried case workers have less time to find “creative solutions,” said George Stevens, head of the North Los Angeles County Regional Center. The process used to award services is “slowly crashing down on clients it was intended to serve,” he said.

Dexter Henderson, head of the South Central Los Angeles Regional Center, said many families in his largely impoverished area did not aggressively pursue services and the regional center “has zero dollars to advertise” them.

In 2010, the center spent an average of $1,991 on each autistic child age 3 to 6 — the lowest in the state. The center in Orange County had the highest average spending, at $18,356 per child.

Terri Delgadillo, head of the state Developmental Services department, testified that regional center budgets eventually will be set so that similar amounts of funding are available for clients with similar needs.

alan.zarembo@latimes.com

© 2012 the Los Angeles Times
Visit the Los Angeles Times at www.latimes.com
Distributed by MCT Information Services

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Comments (8 Responses)

  1. hdemic says:

    This is pretty normal across the board. The stress of standing up against state and schools is enormous. The people that have the most money will get the most free services. They have time and lawyers and not the stress of not enough money.The people that actually need the services (and I’m not talking welfare people) actual working people will get less.
    sincerely,
    mother of disabled child in mich

  2. Sue Keller says:

    Just for the record, NO parents are told by the schools what services and therapies are available for their disabled child. But here’s something that lower income parents get that no one else does: Medicaid. And Medicaid is accepted at Kennedy Krieger, even when private health insurance is not accepted.

    Let’s not make this about race, when it’s really about economic class and lack of education. There are poor white people who don’t get services for their child, either, for many reasons.

    Let’s also be clear, some families are in denial and do not want to face the fact that their child has a disability until it is so obvious there can be no denial of the fact their child is not accomplishing what same-age peers can do.

    I have personally tried to steer parents to agencies that can help them find services and advocates and very few follow up. You can only help people as much as they will let you – if they refuse to advocate for their own child, there is nothing you can do.

    Kids from lower economic classes – with and without disabilities – are especially vulnerable to “institutionalized neglect” from school systems, because their parents have difficulty advocating for them. What is the solution? Mandate that schools reveal ALL services, therapies, and opportunities available. Mandate that parents of kids with disabilities attend classes to learn how to advocate for their child.

  3. Pdbrit says:

    Sue, I agree. We are white middle class and now struggling to make ends meet with job losses, etc. No one is told what services are available to them. You just think the people that work in these fields and control the programs and the money behind them are just waiting to sit down with you and walk the entire process with you – for autism that is just not the case. Parents have to seek out other parents and do their own research to find out.

    At first I thought everyone was like me – stayed up night after night day after day finding out what I could do, what was available, networking into the autism community etc. But ther reality is just as you say, very few do much to help their kids, even when they are coached to the “who what when where and why” of it all. Parents have to sacrifice almost everything about their own lives to help their child with a disability of any kind. Many refuse to be selfless and go about life with complete disregard for the progress their child could make if only they would engage the system.

    I agree that there should be a mandate that all services be exposed to those in need and that parents who except those services be required to learn their role. None of us had any idea what we were doing when we got started in this disabilities racket. It is learned, like everything else.

  4. April says:

    I agree, schools are not helping to guide parents, least not where I live. Many high functioning autistic teens are placed in low functioning environments due to the lack of appropriate services/placement or sometimes they are placed in classes for the Emotionally Disturbed and that is often the wrong method of treatment. Regional Centers and Non-Profits don’t always know what to do; they can’t help if the services are not available in a Community. With the lack of programs and unwilling educators that refuse to change their methods in order to help our kids, everyone suffers. Working through the system and learning to advocate for your child is what parent should do, but if your one of only few the system never changes. My hope is that parents speak up, become educated in their child’s disability, after all we are the voice of autism.

  5. KA101 says:

    This autistic attorney is quite aware of parents not quite making the jump to active advocacy. It’s a crying shame when one’s rights are conditioned on one’s ability to pay, and worse when it’s either FAPE or food.

    That said, given the whole slavery, sharecropping, Jim Crow, trail of injustice in the US’ backstory, it’s safe to presume that race and social class will have a pretty fair correlation, and most likely will continue to so correlate for the foreseeable future. Us USians (generally) are notorious for not acknowledging just how well-off some of us started out.

    Re: April
    Who is “we” in your statement about being the “voice of autism”? If I’m reading your statement right, it seems like it could be “[parents] are the voice of autism.”

    If so, well, they’re one step removed. Parents are “the voice of parents of autistic people.” Autistic people can and do speak for ourselves. (See, e.g., ASAN, ANI, etc) Thanks much.

  6. Rose Covert says:

    The disabilities community have always felt the difference in funding for services and programs between the haves and the have nots. I don’t see it as a purely racial issue but it is a serious concern due to socio-economic disparities which have always affected minorities. Perhaps this kind of recognition of the problem will now see much needed change take affect so that all people with disabilities can be treated equally not just as disabled but as an American.

  7. Annonymous teacher says:

    It’s not just about not telling parents about what is available but blatantly lying to parents. Parents served by regional centers in the central area of Los Angeles are literally told, “now that your child is 3 you don’t qualify for any services.” This is a shameful lie! And it is terrible that regional centers will deny parents services because their child isn’t suddenly cured in 3 months, i.e. South Central. It also doesn’t make sense that one person can decide a child’s ability to receive services and can actually put off approval for mandated parent education classes in order to postpone services till the child is in school and will no longer qualify unless they have a specific behavior support plan instead of a team, again South Central Regional Center. Sadly with cuts to services even the reasonable regional centers are requiring ABA services be specified in the IEP when they know damn well schools are not allowed to specify techniques or models used and that their clients rarely live in areas where innovative programs are provided by public schools.

    As far as city schools go all the innovative and research based programs are hidden, literally hidden, and up until recently never located in low income areas. Parents who do not have the internet or a network of friends, resources, and a lawyer who will get them the best services so that they don’t sue have no chance of navigating the system. Parents should be given a yearly catalogue of programs so that they can make an educated and informed choice for their children. This catalog should also specify norms and staff to student ratios. It is scary but parents are rarely given this information and norms and staff ratios can be changed mid-year without any notice to parents. Public education means that it is open to the public and that all tax payers in the region are legally guaranteed to equal access to services. Until hidden programs and pet projects are made public for all to see this divide will continue to grow and we will continue to lose generations of children who could have been…

  8. Rosella A. Alm says:

    And guess what? Now that all data is posted on each regional center’s respective website, we find that the allegation appears to be true. Black and brown children and adults often are discriminated against.

    However, the data do not take into account all factors such as individuals who are of mixed races, such as my son. He is more Caucasian than African-American or Native American, but since he appears to be African-American that is how he is described. In the disability description, he has more than one disability: he has three, autism, a mental impairment and epilepsy.

    The people that I work for as an advocate usually suffer discrimination because lack of information about the service system or being monolingual in a language other than English. At least ninety percent of the people I work for come from non-English speaking families. It is a great experience meeting and knowing people from anywhere and everywhere.

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