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Families of autistic kids sue over therapy's elimination

Families of autistic children in eastern Los Angeles County filed a class-action lawsuit today against the nonprofit agency that provides them with state-funded services, alleging that it had illegally discontinued their therapy for the disorder.

The agency, the Eastern Los Angeles County Regional Center, informed more than 100 families late last summer that the therapy — known as the DIR model, or “developmental, individual difference, relationship-based” — was being eliminated for their children because of state budget cuts.

The therapy is the basis for a popular treatment known as Floortime, in which a therapist follows a child’s lead during play activities to build communication and social interaction skills.

Eliminating it “threatens to condemn our clients and this group of children to a bleak future under institutionalized care,” said Laura Faer, an attorney with the Public Counsel Law Center, which filed the suit on behalf of the families in Los Angeles County Superior Court.

In July, the state Legislature cut more than $300 million in services for the developmentally disabled, including experimental treatments, recreational activities and nonmedical therapies.

The Eastern Los Angeles County Regional Center — which oversees state-funded services for the developmentally disabled from Highland Park to La Mirada — eliminated DIR because it “doesn’t meet the rigors of science,” said Executive Director Gloria Wong, who is named as a defendant in the suit.

Attorneys for the families said DIR should not be considered experimental since it has been reported “clinically effective” and that none of the other 20 regional centers in the state had discontinued it.

Although there are no controlled scientific studies on DIR, the National Research Council concluded in 2001 that it had enough in common with other, proven methods that it could be considered a valid model for treating autism. Across the country, some public agencies and school districts have funded it; others have refused.

Wong estimated that the regional center was spending $4 million a year on the therapy. The law allows any family to appeal the decision and maintain the service while waiting for an administrative law judge to issue a ruling.

Autism, a neurodevelopmental disorder that limits communication and social interaction, is being diagnosed at record rates.

—Alan Zarembo

 
Comments () | Archives (16)

As the parent of an autistic teen, I think it's unfortunate that the ELACRC had to eliminate this program. However, if there's no money to provide the program, what choice does the Regional Center really have? Parents of kids with special needs have to realize that, in the final analysis, there a limits as to what one can ask a society to provide for its disadvantaged members.

This is just high-class begging.

Last year I visited the Pasadena Child Developmental Center which was a DIR center, it was amazing! Social groups, feeding programs... all using Floortime. I was so envious living in Texas where Floortime is still unknown. when I heard that the regional centers/state no longer regarded DIR as valid therapy I was heartbroken. It has been the most effective therapy for my son.

"...treatment known as Floortime, in which a therapist follows a child’s lead during play activities to build communication and social interaction skills."
Isn't this something parents could and should be doing?

I can sympathize with the parents. Someone near and dear to me has a mysterious physical condition that is helped by expensive medical treatments. However, since when is there a RIGHT to have someone else pay for your care or the care of your child? If you can prove some specific person caused your condition, then that person should pay. We toss around the word "right" or act like there is a right to something too much. I wrote an essay about the nature of rights. If you click my name you can read it.

Thats the problem with California people think that they have a right to everything thats why our budget is a mess. All this is going to do is make the regional centers disappear and then families will have completely no services at all. If thats what they want they will achieve this in the end. No matter what service you cut families will complain so you are in a no win situation. Money can only be stretched so far. I hope families realize this before its too late.

Regarding Christopher W's final analysis: when kids get appropriate therapies it's not just for their families. It's cost effective for tax payers. It's all about transforming a child from complete dependence on care givers to greater independence. As a result of therapy, many of these kids will go on to be tax payers because they'll have jobs. Or at the very least be able to remain longer in their families' homes which is infinitely more cost effective for tax payers.

Regarding beachmom's comment "Isn't this something parents could and should be doing?" Of course! DIR cannot be done without the parents. But autism is complex and kids have challenging behaviors -- a qualified clinician is needed to provide direction and support to the parents. With guidance, parents can more effectively resolve their child's challenges -- which helps the family and results in less help needed from state agencies later in the child's life.

Posting second comment, ( first was never posted by the times)and Wong feels this program does not have value. Christopher W. you are correct, but like to see my money helping people that need help. Instead of the people Fed. government dumps on the states every year, and the states take care of them; and have to give them more money than citizens gets.

The state legislature passed the Lanterman Act and Title 17 to protect these special youth and adults years ago. Regional Centers provide services for the clients not the parents. These clients can not even be insuranced. They have to have special programs. The state has a mandate to provide services for these clients. If any of you had a family member or a friend that need the services the regional centers provided to them and you could see the difference it makes in their lives you would all thank God for regional centers. Regional Centers have gotten caught up in the mis-management of california funds. They should sue California Department of Developmental Services.

The money that is used to fund the Regional Centers and this State for that matter is our tax dollars. It is great that the majority of the people in this State don't have children or a loved one that suffers from Autism. However that does not give you the right to assume that it is not there problem. Do any of you that are reading thes words remember the last time a major program for the disabled was cut? It was during former President, then Govenor Regan's term. It was at that time he closed all of the State's mental facilities. Most notably, Atascadero State Mental Hospital. Hasn't anyone else noticed that all of the mentally ill transient who rome our State are around the same age (Between 45-70 years of age). If you want to see a repeat, allow the funding cuts to happen. Some of you out there may be able to privately fund the therapies that have been shown to improve the quality of life for our children. Others are not so fortunate. Still in all it is more cost effective to help them as children than to try to care for them as adults. BE SMART PEOPLE!!!!!

A lot of useful programs are feeling the budge pains; many of them 'means-tested' or available to low-income families. So much of what we provide ends up being a disincentive to get out of poverty; or to make our true income known. BTW, I don't believe that health care is a "right"--it's a service.

To Ken and Ndirish, who wrote: "Thats the problem with California people think that they have a right to everything thats why our budget is a mess." and " However, since when is there a RIGHT to have someone else pay for your care or the care of your child?"

The issue is not about losing a "right", the issue is truly a breach of contract. Before these services were ever provided or even approved to use state (and some fed) funding, the people behind these service programs had to prove the long term validity of such programs. The money wasn't just "handed out" because someone felt sorry for them.
In other words, the program research proved that taxpayers will save money over long term if these individuals received early intervention therapies to prevent their dependence on state and federal services as adults. Without direct intervention during the most CRUCIAL developmental period of their lives, these children would end up requiring all kinds of state social services besides the awful thought of institutional support, or ending up in/out of jail systems. Without help, they would not be able to live independently or find a place to contribute in society with their own jobs. Isn't that what we want? They'd eventually become taxpayers and contributors or our society just like everyone else. Many of them, with the social skils intervention, grow up to reveal their high functioning skills and intelligence that they become people that help change our world for the better (engineers, doctors, scientists).

Re: Thats the problem with California people think that they have a right to everything thats why our budget is a mess. [Posted by: ndirish]

au contraire...the problem is the “read my lips no new taxes” crew and their myopic budget fixes that just kick the can down the road...and causes untold pain and suffering for the least...

by law children have a right to a fair, appropriate, public education (FAPE)...the simple answers are temporary tax/fee increases that sunset when the economy improves...so much time/energy wasted by idealogs on bureaucratic bs.

regional centers (RC) break the law (the Lanterman Act) which says RC shall provide services as determined by an interdisciplinary team (IDT)

stanley seigler

allthough i know nothing about this therapy i have a 15yr old with autism and what ever help i recieve for my son i am truly grateful for i feel for parents with children with autism and any other disability i am grateful for the school system in los angeles my son has really progressed a lot he can write his name and his address something that i thought he would never do these kids are so vunerable my biggest fear is what will happen with my son when i am no longer around to care for him as a parent i have learned that these kids were hidden in society and treated like they did not even exist shame on some folks they are people too i am not ashamed of my son i love him and it is my responsibility to him to get as much help for him as i can by all means necessary i am not looking for a hand out from anyone i just except whatever help that my child is able to recieve and i am grateful for it too.what i hope for is that people get educated about people with autism so they are able to help when they become adults and are out in society living amongst other people without disabilities they have strange things that they do and to some people they dont know how to interact with autistic people please educate yourselves they are human too they are just locked in their own little world folks they are not aliens. just an example, my son loves dvd movies not the movie but the covers that the movies are held in and if he happens to past by a buisness etc. with advertisements of movies he wants to pull me in and pick up the movies he does not get the concept of we have to buy them are anything else he just wants to take them and have them. and from an outsider looking in they may think this young man is stealing when in fact this is what he likes and doesnt understand that this is not acceptable like a normal child knows. so i have to stay away from video stores etc. while we are out doing errands i buy lots of movies and i take the movie out of the cover and give it to my son and put the movie in a book. the moral to this is some people dont have a clue as to the understanding of raising a child with autism and just because you dont have a child with autism you should still educate yourself about this type of disability because there are lots of people out in the world with it. strangers can be cruel with the stares and comments which can make a parent really go into defense mode fast. so please educate yourself about this. i dont assume that here's a spoiled brat throwing a tantrum i assume that the child may have a disability maybe autism. thanks for a place to vent.

In the case of the East L.A. County Regional Center, a quick cost-benefit analysis should suffice to show that the DIR program should not be discontinued:

Autism is indeed being diagnosed at record rates, and it is in society's interest to find effective therapies. In this case, the DIR model seemed promising. As for the cost of the program: 4 million dollars is a paltry amount of money. The California budget deficit alone is 60 billion dollars, or 15,000 times the cost of the East L.A. County DIR program. Additionally, ending the program will likely cost more than it saves via administrative costs, lost jobs, wasted facilities, and wasted expertise. Overall, it's a very poorly conceived plan designed to distract from the real problems of trillion dollar bank bailouts and wars.

On the other hand, the benefits to society of productive autistics often produce scalable returns: autistics who can overcome their disorders and focus their obsessions on something which society values are some of the most successful and innovative people in Silicon Valley, the Department of Defense, and on Wall Street. A full understanding of why autism matters for all of humanity can be found in the work of Temple Grandin:

http://www.theinductive.com/blog/2010/1/18/temple-grandins-perspectives-on-society.html

You may be interested to check out the Free Sound Therapy Home Programme available from Sensory Activation Solutions. Their Auditory Activation Method builds on the pioneering work of Dr. Alfred Tomatis (Tomatis method) and Dr. Guy Bérard (Auditory Integration Training) and has been specifically developed with the aim to improve sensory processing, interhemispheric integration and cognitive functioning. It has helped many children and adults with a wide range of learning and developmental difficulties, ranging from dyslexia, dyspraxia and attention deficit/hyperactivity disorder to sensory processing disorders and autism. It is not a cure or medical intervention, but a structured training programme that can help alleviate some of the debilitating effects that these conditions can have on speech and physical ability, daily behaviour, emotional well-being and educational or work performance.

There is no catch, it's absolutely free and most importantly often effective. Check it out at: http://www.uk.sascentre.com/uk_free.html.


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