Category: DSM-5 & Psychology

Diagnostic & Statistical Manual (DSM) & Psychology topics including autism, autistic spectrum disorders, intellectual disability, mental retardation & ADHD

Vouchers of $16 K for each disabled person served under Lanterman?

DrCameronJackson@gmail.com

A woman recently wrote poignantly, Put my disabled son on Death’s Row in San Quintin and he will get three square meals, medical care and perhaps even a room with a view… The woman wrote in response to the proposed $568.6 million cut in money allocated for the 246,000 disabled in California served under the Lanterman Act.

The woman’s feelings are understandable given that it costs taxpayers $50 to 70 K per inmate in CA prison compared to the cost to care for each disabled person. Run the math ($4 billion in CA budget allocated last year divided by 246,000 disabled persons equals $16,260 spent per disabled person).

Maybe it’s time to put the family of each disabled person served by CA regional centers in the driver’s seat. Why not have vouchers that follow each disabled person — akin to school vouchers — that give families choice? That way people will become knowledgeable as what things cost and more empowered by making the choices they think best.

How vendors are selected and the amount they are paid has been of concern to the legislature in California. The government wants more transparency. Put the disabled person’s family in the driver’s seat so they know how much money there is to spend and there will be a huge increase in people’s knowledge about the costs of medical care. This will increase transparency in government.

What people have to pay for out of pocket they will watch closely.

Why not reduce the CA budget by 568.6 million and put in place a voucher program? Each disabled individual could receive a voucher $16, 260.

Today, 4-4-2011 Rush Linbaugh asked a UAW worker who called in what his beef was. The UAW worker said that his co-pay has gone up to $35 and prescriptions up also. Asked by Linbaugh what does it cost to go to his doctor the UAW worker did not know.

Then Linbaugh made his point — that the UAW worker has no clue what it actually costs to go to the doctor. During the break Linbaugh looked it up and then said that the average real cost to go to a physician is $400.

Then Linbaugh asked the UAW worker, if you had to pay the $400 out of your own pocket you would know how much, right? Yes, said the UAW worker.

The article by the woman concerned about the cuts in money for the disabled is below:

“I’m beginning to hope my son will be sent to prison – perhaps Death Row.

“Rob stands accused of no crime. And I am not an unloving mother. Let me explain: Rob has a developmental disability, and California is balancing its budget by gutting the services that keep him alive.

The situation is dire enough that I must wonder: Once Rob’s services are cut, will Death Is Death Row be a safer place for him?

I know that every program is getting cut. But the single largest budget cut

just signed into law by the governor – $568.6 million – is for services for people with developmental disabilities.For Rob, and 246,000 other Californians like him, that money went to get him to medical appointments, to manage his finances and – hopefully – to have someone look out for his safety after his father and I are no longer alive.

It is shameful that the most vulnerable citizens are receiving the largest share of the pain. Rob was born 31 years ago, legally blind, with cerebral palsy and intellectual disabilities. Today he is healthy, employed, living with a roommate and paying his taxes. The essential programs that made this possible are supposedly guaranteed by legislation signed by then-Gov. Ronald Reagan in 1969, the Lanterman Act. The law directs the state to provide people with disabilities like autism and Down syndrome with access to housing, health care and employment. For people with developmental disabilities, the Lanterman Act was equivalent to the Bill of Rights, except more important. Without its practical support, many could not survive outside of grim old-fashioned state institutions (which were vastly more expensive – and now mostly have closed).

It’s a particularly bitter irony that I could even consider prison – a far worse institution – as a potential safe haven. But the math is simple. That $568.6 million cut is approximately 20 percent of state funding for services for people with developmental disabilities. This comes after years of smaller cuts – plus cuts to other services they depend on, like Medi-Cal. The safety net was dismantled years ago. Now we are taking down the tightrope itself.

Meanwhile, prisons – protected by a court order – face only a 1 percent cut. Rob’s services are protected only by the Legislature and governor. What have our state’s leaders done for him lately?

In recent years, Rob lost his dental coverage, his physical therapy and his vision care – despite his difficulty walking and seeing. Now the state sees room for another half billion dollars in cuts. That’s why Death Row – with its steady funding and a decade of room and board – is looking better and better. (San Quentin State Prison even offers views of San Francisco Bay and is set to receive a new $356 million facility.)

So, how can you help? Contact the governor and protest the cuts to services for people with developmental disabilities. If that fails, then consider framing one of them for a capital offense. You’ll be guaranteeing them health care and three meals a day for 10 years or more – and possibly a room with a view.
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Here’s some information about the Regional Centers:
Silva Says…An Update On The 67th March, 2011 | Issue 52
Assemblyman Silva Introduces Regional Center Records Act
Assemblyman Jim Silva (R – Huntington Beach) introduced AB 862, the Regional Center Records Act. This measure will bring transparency to a major taxpayer-funded program in California.

“Taxpayers have a right to know how their money is being spent. Parents, vendors and the centers themselves will benefit from increased transparency,” Silva said.

Since the passage of the Lanterman Act in 1969, the 21 Regional Centers have been the conduit to provide services to the developmentally disabled. While they have done great things in accomplishing this mission, recent investigative reports have given cause for concern. A report by the California State Auditor has raised serious questions about how the regional centers choose and pay vendors for the services they provide as well as capital projects and administrative services. The state auditor has suggested that a more uniform, transparent process would improve the cost effectiveness of this program.

“We are proud to be the sponsor of this Act. Regional centers are vital to the community but they need to be more forthcoming with their information,” said Boyd Bradshaw, president of the ResCoalition, a coalition of residential care providers.

California appropriated over $4 billion in last year’s budget to provide for the developmentally disabled. AB 862 will require the 21 Regional Centers to make several important points of data available to the public to include fiscal and administrative information. It can be heard in its first committee as soon as 30 days from introduction.

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Reduce dependency on government by accurate assessment of children ages 3-21 who receive Social Security Disability benefits.

Cut the deficit and encourage self sufficiency at the same time. How? Review and thin out Social Security Disability (SSI-D) benefits to children ages 3 to 21. Too often schools classify children as “mentally retarded” or “intellectually deficient” when they are not. Too often those children end up in Special Day Class (SDC) placements all through school. SDC placements cost roughly 1/3 of the budget for Pajaro Valley Unified School District (PVUSD). Time for those not on the dole to encourage independence and reduce the costs of SSI-D.

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Roughly 1 in 6 persons get a check in the mail from the government. That’s a huge number of people dependent on the government. It’s time to reduce that dependency.

Lots of people think that it’s wrong to cut social security. Yes, it’s wrong to cut benefits to those who paid into SSI, have retired and who rely on social security.

How to responsibly cut the federal deficit and encourage independence? Time to trim Social Security Disability benefits (SSI-D) to children and youth ages 3-21. Let’s reduce SSI-D payments to children and youth 1) assessed inaccurately or 2) who have “out grown” their diagnosis. Children change rapidly. Assessments should be accurate and up to date.

Another way to cut government deficits is to require proof of citizenship to obtain government funded services such as the regional center services. (The regional centers serve persons with low cognitive IQ abilities, requiring treatment similar to persons with low cognitive IQ, autism, seizures and cerebral palsy.)

Some people fly in from abroad or cross our border s so that their children can receive substantial government paid regional center benefits. No proof of citizenship is required to obtain regional center services which serves about 180,000 + persons in California. In the last 10 years the percentage of Hispanic clients has increased from 23 to 28 percent and whites have dropped from 51% to 42%. About 45% of those served are age 3-21.

There are too many children labeled mentally retarded by the public schools who are not slow and who can learn to read and write. The schools wrongfully label them and wrongfully keep them in more restricted placements than they need. These placements – Special Day Class (SDS) – are extremely expensive. In the Pajaro Valley Unified School District (PVUSD) roughly one third of the costs of special education go for SDS separate classes. Children can – and routinely are — labeled by the public schools with “mental retardation” without any assessment of their cognitive IQ and functional abilities. Their school records are reviewed by SSI-Disability and – lo and behold — children are put on SSI-Disability.

Just as unions representing government workers need to be re-certified yearly and workers given a choice whether to pay dues and/or be in a union, likewise children labeled “disabled” need to be routinely re-examined by independent assessors and parents given accurate information and more choice.

Most – but not all — parents want their children to grow up to be self sufficient individuals able to contribute to society. Unfortunately, there are some parents that prefer dependency for their child and themselves and happily seek checks in the mail.

That’s why those not on the government dole must do what we can to encourage independence and reward self sufficiency.

Take a look at the budget for your local school district. What percent goes for Special Day Class (SDC) placements? Who actually checks to see that children receiving special education services are actually re-assessed with standardized tests every three years?

Parents and taxpayers can and should require a random audit of special education records for their school district. What tests placed that child in special education and what tests show that those services need to continue? If no progress in academic skills, why not?

Why not tie teacher pay increases to showing reasonable progress in academic skills for all students — including special education students. What say you?

DrCameronJackson@gmail.com

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Aptos, CA psychologist: Avoidance of social interactions & compulsive repetative behaviors — common autistic traits — replicated in mice by mutating shank3 gene may lead to drugs to treat autism

Probably there are multiple genes and multiple avenues for the development of autistic traits in children. There is recent news that one particular gene — the shank3 gene — may be responsible.

Some children strongly avoid social interactions (they arch their back & look away) as infants. Other children develop normally only to suddenly lose all language and social interests typically around the age of 18-24 months. Fascinating, about one quarter of U.S. children who meet criteria for a diagnosis of autism at age 3 will “shed” that diagnosis before they reach adulthood.

So, one wonders whether a single gene is responsible for such wide variations in how autistic behaviors are expressed during a child’s development. See below what scientists say about the shank3 gene.

MONDAY, March 21 (HealthDay News) — Scientists report that mutating a single gene produced mice with two of the most common autism traits, a finding they say could one day lead to the development of drugs to treat autism.

Currently, there are no effective drugs to treat the disorder.

Mutating the shank3 gene led to compulsive repetitive behavior and avoidance of social interaction in the mice, apparently caused by impaired communication between brain cells, said the researchers at Duke University and the McGovern Institute for Brain Research at the Massachusetts Institute of Technology.

The shank3 gene has been implicated in human autism.
The study was published online March 20 in Nature.

“We now have a very robust model with a known cause for autistic-like behaviors,” senior author Guoping Feng, a professor of brain and cognitive sciences at MIT, said in a McGovern Institute news release. “We can figure out the neural circuits responsible for these behaviors, which could lead to novel targets for treatment.”The genetically altered mice also provide a way to assess experimental autism drugs before they’re tested in humans.

Scientists acknowledge that research involving animals often fails to result in beneficial treatments for humans.

The U.S. National Institute of Neurological Disorders and Stroke has more about autism

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Supplements such as cod liver oil, melatonin (for sleep) and folic acid help children & adults with autistic spectrum disorders

non-drug supplements like cod liver oil and melatonin (a natural enzyme produced by the body) help children and adults with autistic spectrum disorders.

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Sufficient, restful sleep and absorption of appropriate food is crucial to health and well being. True for every one and particularly difficult for many persons with autistic spectrum issues.

Remember grandmother – or mother – with the spoon of that awful tasting cod liver oil? Research shows that cod liver oil helps many children with autistic spectrum disorder difficulties. Ever had problems with jet lag and difficulties re-establishing a natural sleep rhythm? Melatonin is a natural enzyme your body produces which may be low or lacking in persons with autistic spectrum difficulties.

Many children and adults with autistic spectrum disorders have sleep and digestive disorders as well. Many are “picky eaters”. Many as children had constant diarrhea. Many have difficulties falling asleep and difficulties staying asleep.

What help is there? Autism Research Institute compiles information from parents as to what helps. Go to Autism Research Institute and take a look at the non drug supplements that help.

Of note, cod liver oil made 55% Better and 4% Worse for N = 2,550
folic acid made 45% Better and 5 % Worse for N = 2, 505
melatonin made 66% Better and 8% Worse for N= 1, 687

Of course, first consult with your pediatrician and read the literature.

Please comment what works for your child or spouse with autistic spectrum issues. What about the liquid vitamins? What about iron supplements?
DrCameornJackson@gmail.com

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Aptos, CA conference on Asperger’s Disorder by Laurie Leventhal-Belfer, Ph.D

DrCameronJackson@gmail.com

The Friends Program, located in Palo Alto, California, is a therapeutic group designed to address the developing needs of young children with Asperger’s Syndrome and their families.

Laurie Levanthal-Belfer, Ph.D. is the Director of The Friends Program and can be reached at Dr.LaurieLB@gmail.com and on the web at www.thefriendsprogram.com

Dr. Levanthal -Belfer was the speaker for Asperger’s Disorder: A Developmental Approach to Understanding Asperger’s Disorder, Assessment and Intervention held in Aptos, CA on 2-26-2011. This was a conference attended by psychologists, nurses, marriage and family counselors and interested public.

What did attendees learn? Some notes:

Asperger’s Disorder became diagnosis in 1994 and will not be a separate diagnosis in the next DSM-V expected out in a year or so. Asperger’s Disorder will be eliminated. Instead there will be Autistic Spectrum Disorder.

What I learned looking at my notes: Asperger’s Disorder children at age 4 or 5 play more like a child of 2 or 3. They have intense interests which may change but the intensity of the interest is notable. Transitions are difficult for them. They have one way to go to school and if a parent or other person deviates that will spark a melt down. They cannot take the perspective of the other. The therapy groups work a lot on white lies and how to tell them. Children with Asperger’s Disorder are “black-white” children that think there is only one way to do things.

Parents cannot ask children with Asperger’s Disorder, “What did you do today?” Think of Asperger’s Disorder children like a computer with files. You have to find the right file and open it. Likewise, a parent has to inquire, when you were on the playground during recess what game did you play? That kind of specific questioning — akin to opening a specific file — helps a child to know how to answer a question.

It’s important that parents “cut the white space” — the unstructured time. When children with Asperger’s Disorder know exactly what to do they talk less about their current intense interest. Many children with Asperger’s Disorder have sensory regulatory issues which Dr. Leventhal-Belfer thinks are related to anxiety. Asperger children can be so loud themselves and yet over sensitive to noise. Usually when doing an intake some family members are identified as having Asperger symptoms.

Dr. Laurie Levanthal-Belfer likes the Robert’s test for assessment. The Robert’s test is a projective test that shows social situations. She uses kinetic family drawings to see how family members relate to each other. Often one parent has traits highly similar to the child with Asperger’s Disorder. Dr. Levanthal-Belfer has found that the same strategies that work with children also work with the spouses that have Asperger’s Disorder traits.

Concerning assessment: Dr. Levanthal-Belfer asks for home videos, does school observations, takes a developmental history and does a parent interview. She will use the Wechsler IQ tests for assessing cognitive abilities. She assesses how the parent and child interact by having them build a house out of blocks, do clean up, do a learning task (puzzle, read a book, teach the child how to be President). She wants to see how the parent leads the child and vice versa.

Of note for therapists: Dr. Levanthal-Belfer said that insurance pays for treatment but not for diagnosis. She asks, but how do you do appropriate treatment without accurate diagnosis? Linda Lotspeich, M.D. suggests that therapists give 3 different diagnosis depending on the audience.

She tells graduate students to first rule out Autism before considering Asperger’s Disorder.

California schools take the position that if the child can do age appropriate work then they will not offer an IEP.

The key part to The Friends Program is the parent component. And generalization is key. written by Cameron S. Jackson DrCameronJackson@gmail.com

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Aptos psychologist Dr. Jackson: Ritalin used for years with ADHD helps children with autistic spectrum disorders per 2005 research

Ritalin helps about 70-80% of children diagnosed with Attention Deficit Hyperactivity Disorder (ADHD) with a 1 1/2 percent who discontinue due to side effects. Now research shows that Ritalin helps children with Autistic Spectrum Disorders — not to the same extent and with more side effects. A 2005 study shows that Ritalin helps 50% of children on the spectrum with a an 18% discontinue rate due to side effects.

My question: What is helped the most? Executive functioning abilities (attention, planning, sequencing) or impulsively or what?

See the following research article:

“Hyperactivity, distractibility, and impulsivity are common symptoms in children with autism and other pervasive developmental disorders (PDD). Children with PDD who experience these symptoms are not considered to also have Attention Deficit Hyperactivity Disorder (ADHD). This is because their symptoms of hyperactivity and inattention are thought to be secondary to the autistic symptoms and/or intellectual disability, and also the response to treatment may be different. A number of studies have explored the use of stimulants such as methylphenidate in typically developing children with ADHD, but few have examined the use of methylphenidate in children with PDD. This study sought to determine the efficacy and safety of methylphenidate in children with PDD and hyperactivity.

Seventy-two children with PDD and moderate to severe hyperactivity participated in a 1 week test-dose phase to see how well they tolerated methylphenidate. Each child received placebo for 1 day, then increasing doses of methylphenidate (low, medium, high) for 2 days each. The 66 children who tolerated the test-dose were then randomly assigned to the next 4 week phase. The trial was double-blind, meaning that neither child, parent, nor doctor knew whether the children were receiving active drug or placebo. It was also a crossover trial. In a crossover trial subjects are randomly allocated to one of two groups. Subjectsallocated to the methylphenidate group receive methylphenidate first, followedby placebo. Vice versa subjects in the placebo group receive placebo first, followed by methylphenidate treatment. This designallows contrasting the response of a subject to placebowith the same subject’s response to methylphenidate. Each child therefore received placebo and the 3 different dosage levels (provided they were able to tolerate the dosages during this longer phase). Children who responded positively during the crossover phase were then entered into an 8 week open label (i.e. no longer blinded) continuation phase at their best dosage. The primary outcome measure of the study was the hyperactivity scale of the Aberrant Behavior Checklist (ABC).

The investigators found that methylphenidate was more effective in improving symptoms of hyperactivity and inattention than placebo in children with PDD (49% response rate). Adverse effects were more frequent with methylphenidate than placebo and included irritability, decreased appetite, difficulty falling asleep and emotional outbursts. There was an 18% discontinuation rate due to adverse effects. The 49% response rate is less than the 70% – 80% response previously reported in a large study of children with ADHD; the 18% adverse event rate for children with PDD was higher than the 1.4% rate reported in the aforementioned study of children with ADHD.

Conclusions

The investigators conclude that methylphenidate is a reasonable choice for treating hyperactivity in the context of PDD given the response rate of 49%, with the caution that there is a strong possibility of adverse effects.

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Big changes for CA regional centers: 2 hr. emergency response, 1 to 62 ratio staff to clients, transparency in government, audits …

Look for big changes in how California regional centers conduct business based on changes in the law. All sorts of information must be made readily available to the public via the Internet. Staff to consumer ratios will ensure a certain level of service. All contracts between $250, 000 to $500,000 must get separate audits. All contracts larger than $350 K must be reviewed and approved by the board.

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New CA law 4629.5 requires that 85% of regional center money be spent on DIRECT services (assessment, diagnosis, clinical services) and only 15% go for administrative costs.

CA law 4629.5 requires that 85% of money spent by the regional centers be spent on direct services –and only 15% on administrative services. Some regional centers are “top heavy” with administrators called District Managers. Will the excess District Managers be sacked or moved into direct service jobs?

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So how can the public see the books for the 20+ non-profit California regional centers? What changes will the 4629.5 law have?

Some CA regional centers have lots of administrators — called district managers — who do not provide direct services. So will regional center district managers become service coordinators in order to keep their jobs? That would be one way to reduce the huge case loads!

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How to rein in costs for persons with developmental disabilities in CA which doubled in last 10 years?

The cost for regional centers which care for disabled children and adults doubled in last 10 years in California. What are ways to contain costs and still provide appropriate services?

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Standardization throughout the regional centers of Purchase of Services (POI) is a major way to contain costs.

Why not have an Internet method for regional center employees to suggest ways to reduce costs? The social workers who set up the POI’s probably have some excellent ideas how to reduce costs. So, ask the regional center social workers!

Once a regional center client — always a regional center client?

Some regional centers make little or no effort to exit persons who never belonged or who no longer are substantially disabled. Bad publicity and administrators think it a waste of time and resources because the Fair Hearing process is skewed in favor of the claimants.

Hence, the legislature needs to set a clear policy how all regional centers can exit clients who no longer are substantially disabled.

How? Every school age child who receives regional center services has a school Individual Education Plan. The legislature could require schools to automatically supply copies of 3 year re-assessments to the regional centers for review. And set up a standard method to exit children from the regional center based on progress made in school and regional center provided services.

LAO’s Office Releases Report for Options to Achieve Budget Savings in the Regional Center System

The Legislative Analyst’s Office, a non-partisan Fiscal and Policy Advisor for the California Legislature, has issued a report providing recommendations regarding funding for the regional center service system.

Following is the introduction of the report:
“Total expenditures for the regional center system that provides services for persons with developmental disabilities more than doubled between 1999–00 and 2009–10, leading to a series of actions by the Legislature to slow down the growth in the program.

In this report, we describe and assess proposals in the Governor’s 2011–12 budget plan to achieve further cost containment in programs administered by the Department of Developmental Services (DDS), including community services. We also provide the Legislature with additional options to achieve savings in community services through expansion of the existing Family Cost Participation Program (FCPP) or through implementation of “means testing” to determine program eligibility. Either of the approaches that we recommend would help ensure the long–term sustainability of the program for those consumers with the greatest financial need for its services.”

Read the entire report online at the LAO Web site
Updated on February 03rd, 2011

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How to measure autism in toddlers: Measuring autistic traits in toddlers with the Q-Chat shows a normally distributed measurement similiar to I.Q. Maybe the ADOS cannot accurately measure autistic traits as the ADOS measures like a ruler or thermometer

ADOS measures autism like a ruler or a thremometer. But if autistic traits are like cognitive IQ traits — and distributed normally — then tests like the ADOS are not accurate. We need tests akin to IQ tests that can measure autistic traits using different measurement tools.

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Is it time to view autism as a psychological trait similar to intelligence? Some researchers say yes.

If true, that most Americans have some “autistic traits” and a few of us are very low or very high in “autistic traits”. If autism is normally distributed — in the shape of a bell curve — then it’s time that standardized tests for measuring autism are developed similar to how intelligence is measured.

If true, then the supposed “gold standard” for assessment of autism in toddlers may not be so golden after all. Why?

The ADOS developed by Lord et al measures autistic spectrum traits the way a thermometer or a ruler does. The difference between 2 and 3 is the same as between 12 and 13. But if autism is normally distributed then different measures — with a different kind of “ruler” need to be used.

Background to how intelligence (I.Q.) is measured:

The intelligence of 2 out of 3 persons in the U.S.lies between 85 and 115. Only 2 or so persons have an I.Q. of 70 or lower. Likewise, only 2 or so have an I.Q. of 130 or higher.

In Feb., 2008, Carrie Allison et al published a paper: The Q-Chat: Quantitative Checklist for Autism in Toddlers. A normally distributed measure of autistic traits.

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