Arc major events this week: cuts in spending levels target disability programs

8 Feb

From this week’s “Capital Insider” email from The Arc and United Cerebral Palsy. The US Federal government is preparing the next year’s budget and cuts are on the way. The fewer people who contact their representatives, the deeper the cuts will be for their communities.

FY 2011 Appropriations – House Budget Committee announces spending levels; Targets for disability programs are more than 15% below current levels.

House Budget Committee Chairman Paul Ryan (R-WI) announced the overall budget allocations for the Appropriations Committee to use to set spending levels for the remainder of the FY 2011. Currently the federal government is operating under a Continuing Resolution (CR) which largely extended FY 2010 spending until March 4, 2011. Under the plan, non-security programs would be reduced by an average of 15.4% below the current funding levels. Using this amount, the House Appropriations Committee Chairman Harold Rogers (R-KY) announced the specific levels for each of the 12 Appropriations Subcommittees. The Labor, Health Human Services and Education Appropriations Subcommittee will need to produce a bill that is 12.7% below funding for the remainder of the year. The Transportation, Housing and Urban Development Subcommittee will have to cut funding by 26.1% to meet the target. This does not mean that the subcommittees will need to cut all programs by this amount, but that the total funding for all programs within their jurisdiction cannot be above this level. The Subcommittees will decide how much funding to cut from each program in the coming weeks.

Budget – New bill introduced to radically cut federal spending across all programs, including entitlements

Senators Bob Corker (R-TN) and Claire McCaskill (D-MO) introduced S. 245, The Commitment to American Prosperity (CAP) Act, which would cap all federal spending at a set level. This would include all entitlement spending (Social Security, Medicare, Medicaid and others) and all discretionary spending (education, housing, employment and others). The cap would be tied to a percentage of the Gross Domestic Product (GDP). GDP is the total market value of all goods and services produced by our economy. If the spending cap is exceeded, the Office of Management and Budget (OMB) would be authorized to make automatic spending cuts across all federal programs. A two-thirds vote in Congress would be needed to overturn any cuts. The amount of the cuts would be in proportion to how fast each program is growing. Unlike previous laws to control spending (Gramm Rudman Hollings, Pay As You Go) there are no protections for low income entitlement programs such as Supplemental Security Income and Medicaid. As a result, the impact of exceeding the cap would mean that the biggest cuts would come from Social Security, Medicare and Medicaid. These programs make up a significant proportion of federal spending and are growing faster than many other programs due to the aging of the population and rising per-person health care costs.

Bill Gates on the anti-vaccine movement and its connection to autism

4 Feb

Gates: Well, Dr. Wakefield has been shown to have used absolutely fraudulent data. He had a financial interest in some lawsuits, he created a fake paper, the journal allowed it to run. All the other studies were done, showed no connection whatsoever again and again and again. So it’s an absolute lie that has killed thousands of kids. Because the mothers who heard that lie, many of them didn’t have their kids take either pertussis or measles vaccine, and their children are dead today. And so the people who go and engage in those anti-vaccine efforts — you know, they, they kill children. It’s a very sad thing, because these vaccines are important.

Bill Gates, telling it exactly like it is.

Podcasting to the future

4 Feb

There’s so much I wish I knew about my parents. Now that I am old enough to understand them as people rather than as “mom” and “dad”, it would be so nice to hear what they thought about as I grew up.

Through a strange series of events, I happen to have one of those small digital video recorders that I don’t really need. I gave it to my wife, who didn’t use it. At one point it hit on me. Podcasting. Not just any podcasting, podcasting to my family.

The camera is now at work. As I drive to work I sometimes hit on things I wish I could tell the future. Sometimes I find a quiet place, close the door, turn on the camera and talk. I say the things now that I may not remember later. Like how you can take as many pictures as you want, but it will never remind you of the feeling of a little hand in yours as you walk to school.

Sure, maybe the files will get lost, just like the negatives from the pictures my parents and grandparents took. Maybe. But, perhaps someday my family can see what I thought (and how I looked!) way back in 2011.

Did Andrew Wakefield keep patient medical records in his personal possession?

4 Feb

Brian Deer recently gave an interview on EconTalk. The transcript and recording are up on the site as “Deer on Autism, Vaccination, and Scientific Fraud.” I wrote about this recently for LeftBrainRightBrain and ever since I’ve had a nagging feeling that I missed something important. Something was wrong.

The sentence that was bugging me was this:

The next stage which was very unfortunate for him was that we got a court order against him requiring him to hand over to our lawyers the hospital medical records of the children.

Now I know why this bugs me. Mr. Wakefield should not have had access to the records. Take a look at the time line Brian Deer produced. The lawsuit was in 2005:

January 2005: Wakefield initiates libel lawsuits, funded by the Medical Protection Society, against the Sunday Times, Channel 4, and Brian Deer over Deer’s website, claiming that all allegations are false and defamatory

By this time, Andrew Wakefield had left the Royal Free Hospital. In fact, he had been gone for over 3 years:

October 2001: Wakefield is asked to leave the Royal Free after failing to mount a large scale controlled study to confirm or refute his claims about MMR

Which leaves me with the nagging question: How did Andrew Wakefield produce the patient records for Brian Deer?

Edited to add: Note, commenter sheldon101 in the discussion below puts forth the very plausible explanation that these records would have been available to Andrew Wakefield due to the GMC proceedings which had been initiated against him by this time.

One of the big talking points of late amongst the supporters of Andrew Wakefield is the charge that Brian Deer somehow illegally obtained copies of medical records for the children involved in the Wakefield research program. In a strange twist of fate, it appears that it is Mr. Wakefield who had them in his possession.

If true, we must ask whether this was appropriate for him to keep the records. Was it even legal? Andrew Wakefield was, at this time, not at the Royal Free Hospital. He was not the treating physician for the children at any time. Had he obtained permission from the Royal Free to take those records with him? Could the Royal Free have even granted such permission? Did he have written permission from the parents, all the parents, before taking the records?

It is a very interesting question. One which I hope Mr. Wakefield will address.

As an aside, Mr. Wakefield recently disclosed a “new” document which clears him of wrongdoing (“New document confirms that there was no fraud”. This new document was a handout from Prof. John Walker-Smith for a Wellcome Trust meeting, entitled “Enterocolitis and disintegrative disorder following MMR: a report of the first seven cases”.

Just a note. This “new” document was entered into the GMC record on Day 74 when Prof. Walker-Smith was on the stand. It didn’t clear them then.

Is this perhaps new to Mr. Wakefield? Did he miss that day at the GMC? Well, no. Andrew Wakefield refers to this document in his complaint to the Press Complaints Commission (although he gets the year wrong as ’06 instead of ’96), and he refers to it in his book, “Callous Disregard” (page 202. It’s citation 73 for that chapter).

I guess Mr. Wakefield’s definition of “new” and mine differ. As do our definitions of “ethical” and many other definitions.

How well do institutional review boards work at protecting patient’s rights?

3 Feb

One factor that struck me in the interview that Brian Deer gave recently was the fact that until rather recently, he would have had no method to obtain the ethics committee (in the US institutional review board or IRB) information on Andrew Wakefield’s research. The IRB was internal to the hospital. Without the Freedom of Information Act, he may never have gotten access to these records.

He [Andrew Wakefield] could never have expected when he was doing this research that all of a sudden his funding would be exposed to scrutiny, and also the Ethics Committee. In America called Institutional Review Boards. Bodies of doctors, scientists, others associated with medical centers which give permission for research to take place. The paperwork of that body of the Royal Free Hospital also moved into the public domain by the Freedom of Information Act. I think I was the first person ever to get hold of these kinds of papers.

Andrew Wakefield clearly didn’t take ethics approval seriously. He started his program before the ethics approvals were in place. When asked to explain why he took blood at a birthday party without ethics approval, his explanation was that he didn’t think that ethics approval was needed for people who were not NHS patients.

Q Did not that difficulty, which, as I say, appears to have been encountered by researchers other than yourself, indicate to you that there were ethical considerations about undertaking this procedure on normal children?
A Yes. The ethical considerations that I considered were clearly that there was full informed parental and child consent. As I have said, my understanding at that time was that ethics committees existed for the protection of NHS patients.

In another infamous example, David and Mark Geier received approval for research from an IRB. The IRB was had David and Mark Geier, Mrs. Geier and other interested parties as members. This would not have come to light without another Freedom of Information Act (US) request. If I recall correctly, the IRB was instituted after the research began as well.

I know that these are pretty egregious examples but I am left wondering–how many researchers consider ethical approval to be just an annoyance? Just some rubber stamp they need in order to do their research? I hope the number is small. I hope that in the day of FOIA requests, institutions and researchers take this seriously.

Jenny McCarthy backs away from vaccines

3 Feb

As I blogged recently, Paul Offit was a guest on a US show called The Colbert report. Whilst emailing him about his appearance he mentioned the following:

Of interest, one of the show’s staff said that xe had been called by Jenny McCarthy (which I assumed meant Jenny McCarthy’s handlers), who told xyr not to mention Jenny’s name because *Jenny no longer speaks out against vaccines* . [Jenny’s handler was told] that Colbert wouldn’t mention her name but I was welcome to. The opening came when Colbert said he hadn’t heard about the science. But I didn’t mention McCarthy.

My, my. I wonder if anyone has told the founder members of Generation Rescue this little factoid? And what use to them is a Jenny McCarthy that won;t spout off about vaccines at the drop of an opinion?

Russ Roberts hosts: Deer on Autism, Vaccination, and Scientific Fraud

2 Feb

I keep thinking I’ve blogged the last on this. But, I do think there is some interesting information here for some. In Deer on Autism, Vaccination, and Scientific Fraud, Brian Deer goes through the history of his investigation–how/why he got started, what tipped him off that something was amiss with Mr. Wakefield’s research, the mistakes Mr. Wakefield made in trying to handle and quash the story.

This post is long, but it covers a lot of material not about the investigation. It answers many questions that have been posed (such as what sort of job does Brian Deer have, how did he get access to information about the Lancet 12 children).

Investigative journalist Brian Deer talks with EconTalk host Russ Roberts about Deer’s seven years of reporting and legal issues surrounding the 1998 article in The Lancet claiming that the MMR vaccine causes autism and bowel problems. Deer’s dogged pursuit of the truth led to the discovery that the 1998 article was fraudulent and that the lead author had hidden payments he received from lawyers to finance the original study. In this podcast, Deer describes how he uncovered the truth and the legal consequences that followed. The conversation closes with a discussion of the elusiveness of truth in science and medicine.

Russ Roberts’ bio:

Russell Roberts, Associate Editor. Russell Roberts is Professor of Economics and the J. Fish and Lillian F. Smith Distinguished Scholar at the Mercatus Center at George Mason University. Before coming to George Mason University, Roberts was at Washington University in St. Louis where he was the founding director of the Center for Experiential Learning at the John M. Olin School of Business and a Senior Fellow at the Weidenbaum Center on the Economy, Government, and Public Policy. Roberts has also taught at the University of Rochester, Stanford University, and UCLA. He holds a Ph.D. in economics from the University of Chicago.

Roberts is a regular commentator on business and economics for National Public Radio’s Morning Edition. In addition to numerous academic publications, he has written for the New York Times and the Wall Street Journal. Professor Roberts is especially interested in communicating economics to non-economists. His first novel, The Choice: A Fable of Free Trade and Protectionism, a jargon-free book on international trade written for the non-economist, was named one of the top ten books of 1994 by Business Week and one of the best books of 1994 by the Financial Times. An updated and revised edition was published in the spring of 2000. His new book is The Invisible Heart: An Economic Romance (MIT Press, 2001).

Russ Roberts is the host of EconTalk, economics podcasts available here and through iTunes. He blogs at Cafe Hayek along with Don Boudreaux.

There is an audio podcast and a rough transcript on the site.

In 1998, when the Lancet paper came out with a big splash, Brian Deer was working on stories about the DPT vaccine. But he decided against working on the MMR story at that time. He knew that to do the story correctly meant a lot of work, not just publishing what Mr. Wakefield and the Royal Free put out in a news conference:

I happened to be looking at that purely by chance when Wakefield’s paper was published. I looked at his paper and thought there was something very odd about it, doesn’t sit right just reading it on the page. Said at the time I was absolutely not going to get involved in MMR. Journalistically at the time, allegations against vaccines, if you want to do them in a responsible way rather than simply go to government experts or parents or people with interests and write down what they say and present the clash of opinions–if you want to understand what the story is really about, they require an enormous amount of work.

Later, he got pulled into the story:

At the time people were already saying: MMR, Brian Deer, he’s our expert, based on what I’d done in DTP. But in 2003, one of the editors was changing jobs, taking over some feature pages; wanted some stories. Said to me: Can’t you do investigation? I said: Well, what? Three or four different ideas. One was MMR. Didn’t want to get involved because there was a lawsuit coming up. By serendipity the lawsuit was cancelled and we’ll just do a feature, spend 2-3 weeks on the outside on MMR. Three weeks turned into 7 years, though not the whole time. Did make a couple of TV shows about other things as well.

Brian Deer started on the story, and right away he got pushback from Andrew Wakefield:

When you started looking into that Wakefield study, how did you proceed and what did you discover? Did routine journalistic work. At the start, put a phone call in to Dr. Wakefield. He always works with professional publicists; this time his publicist, within about 3 hours of me calling, his publicist had made a complaint against me to the paper. A bit of a strategic mistake on their part. The essence of the mistake is I am self-employed. But I have worked for the Sunday Times since 1981–that is my home. I was a staff reporter, a specialist, they sent me to the United States, and so on. But they imagined that this meant I was some sort of outsider. When they got onto the paper and started making complaints, they were making complaints against somebody who actually sat at the next desk to the editor, who had worked with the head of the legal department since we were all young together. So, it didn’t work, the complaint. I was a known entity. Whilst I am regarded as being a difficult, mercurial person, I think it is true to say I am trusted. That was the first mistake they made.

Brian Deer made some phone calls. Talked to parents of the Lancet 12. He immediately found that there was a problem. The “case series” was heavily biased. The children were recruited. They were involved in litigation.

Right at the start I rung up some parents who had been in the original paper and interviewed them. Interviewed them in a way they had not been interviewed before. Produced important information within hours of beginning the story. Which was? I phoned a lady who had started a campaign group against the MMR back in the 1990s and she told me in the conversation that members of her group were in the Wakefield study; said: they are all members of our group and still in the group. So these parents who had turned up at the hospital, she told me they were all members of her campaign group. Immediately alarm bells started to ring, because nothing about that had been mentioned in the paper. They all just appeared to be routine patients of a big London hospital; but she was saying they were part of a group. A group that had been created before the study. It was the result of her campaigning. She put advertisements in newspapers and made approaches to a firm of lawyers.

He discusses the start of the interviews. How he interviewed one parent using “Brian Lawrence” and how the information he heard didn’t mesh with the Lancet paper:

How did you interview them and what did you discover? The key one in the series of 12 was family 2. The mother, it came out over a period of time, had been a long-time collaborator of Dr. Wakefield’s. I went to interview her; in fact, I used my middle name which had been editorially approved from my managers rather than my full name so they wouldn’t google me and see I was an investigative reporter. I said I was Brian Lawrence, my middle name. How were you representing yourself? My friends say I’m a journalist you wouldn’t want to write about you. You would google me. I asked her all the questions people ask, isn’t it awful; who do you blame? I then went into exceptional detail as to what actually happened when she said her child was vaccinated and developed these problems. Went over her story in great detail. She’d already recently been involved in litigation; so the matter was very clear in her mind. She told me a very detailed story. You could say: People forget, matter of time; but this was the moment when she was saying her child’s life had forever been destroyed. Have to expect she would have that in her mind. It was quite clear that the story she was telling me did not correspond with any case in Wakefield’s paper. What it boiled down to in her case was that she had changed her story, told one story when she’d gone to the hospital and now telling another story; and the two stories couldn’t be reconciled. The difference was when did the problems of autism first reveal themselves. In her story that she told the hospital, it was 14 days; but in her actual story, far from the case. In fact it was months. She’d given one story which suited the paper. She may have done so in complete good faith. Might have misremembered. But when she had the opportunity to study her child’s records, it was a different story.

He tells of the first stories coming out in the Sunday Times, revealing that Mr. Wakefield was working as a paid expert, his patent, and the fact that data from his own laboratory (from Nicolas Chadwick) showed that there was no evidence of measles virus in the gut tissues of the children.

As a result of that, Wakefield made his second big mistake. His first was to have complaints made against me to my employers. Second was to begin litigation. He sued for libel.

Because of the lawsuit, Brian Deer was able to obtain more information. He was pretty much forced to in order to defend himself in the legal action. He used the freedom of information act. This exposed the connection to the Legal Aid Fund and the documents from the ethics approvals for Mr. Wakefield’s research (which showed that Mr. Wakefield started before he had ethical approval).

He couldn’t have expected–maybe this was his second mistake and suing me was his third mistake–in late 1996, early 1997, going back to when Princess Diana was still alive, that the incoming Labour government, the Tony Blair government, with a commitment to produce a Freedom of Information Act. America’s had a freedom of information act for so long no one can remember when it began. We had one introduced by the incoming Blair government. Enacted in 2000, started to take effect in 2004. Because the government had told government bodies to act as if the Act was in force, I was able to get from public bodies the fact that Wakefield had been paid. Funding Authority, in Britain called the Legal Aid Fund. Kind of like public defender system except the government doesn’t provide the defenders–it provides the money. So, it was a government fund to allow access to poorer people to litigation which had funded Wakefield’s lawyer. He could never have expected when he was doing this research that all of a sudden his funding would be exposed to scrutiny, and also the Ethics Committee. In America called Institutional Review Boards. Bodies of doctors, scientists, others associated with medical centers which give permission for research to take place. The paperwork of that body of the Royal Free Hospital also moved into the public domain by the Freedom of Information Act. I think I was the first person ever to get hold of these kinds of papers.

Mr. Wakefield tried to get the lawsuit put on hold, but Mr. Deer was able to force the case to proceed. Mr. Wakefield kept the pressure up:

There were occasions. He also sued me for my website, for which I have unlimited liability, would have lost my home had it been true. I would be sitting at my computer doing some work and there would be a ring on the doorbell and there would be a man dressed in black leather with a motorcycle helmet on and he would present me with an envelope. This happened to me twice. I opened the envelope and there’s an [?] for Wakefield’s legal costs for the hearing that was going to take place the next day in court. The figures were about $30,000 U.S. dollars, that kind of money just for one hearing. That was the kind of pressure they were trying to put on me.

And this proved to be a tactical mistake for Mr. Wakefield. This gave Brian Deer access to the medical records:

The next stage which was very unfortunate for him was that we got a court order against him requiring him to hand over to our lawyers the hospital medical records of the children. I never took possession of them. The judge balanced the issues of the confidentiality of the children as opposed to the fairness of the litigation in front of the court. Ordered that I be allowed to read the unredacted–with their names and all their details–of the 12 children. There were just 11 at the time–the American wasn’t involved in this. So under strict supervision of my lawyers, with a lawyer sitting at the end of the table throughout, I sat and read the medical records of the children.

It appears that Mr. Wakefield knew that giving Brian Deer access to this information was a problem, as he chose this time to cancel his lawsuit. Brian Deer couldn’t use the information, but at this point he knew enough details to realize that there was an even bigger story here. So he attended the GMC hearings:

I have never said anything about what I read in those medical records. The position is that they were disclosed to me in the course of litigation and I may make no use of anything I saw in those records or disclose anything. As I was sitting there reading them, Dr. Wakefield’s lawyers were in a taxi travelling across London to the High Court to disband the lawsuit against me. When I got home that night–and I hadn’t taken any notes with me or documents–I went home, phone rang, and it was my lawyers saying: It’s over. They’ve thrown in the towel. So I’m in the position where I have read the medical records of these children but can make no use of the content of them. However, I have to say–I’ve talked to my lawyers about this–it is a fact that it’s impossible to un-know something. Once you know something, you can’t stop knowing it. Unrealistic. So, what I did was to ensure that I presented myself at the next opportunity where these medical records would go on display. And they would go on display at a Disciplinary Hearing which arose from my original stories.

Asked a “what next?” question, Mr. Deer responds that it is time to move on:

Not sure I want to spend a lot more time on long investigations. Saying of the Buddha: The things we dwell on become the shape of our minds. I’m kind of tired of the hunt aspect of it and the adversarial quality to investigative journalism, the extraordinary hours that have to be put in to it to get anywhere. The complex legal issues that are always coming up. In an ideal world I’d find something that didn’t require me to do more than write a couple of hundred words in a piece and be cheap and cheerful. But I have a feeling that is just how I am feeling at the moment and it won’t be long before something else comes along that I get interested in and get drawn off into. I think what I need now is a holiday! I for one now am grateful. Striking a blog against fraud doesn’t make up for all the pain and losses people suffered as a result of the fraud, but it will open people’s eyes down the road to other things.

Mr. Deer goes into the results of the investigation, both his and the GMC investigation. He discusses how Mr. Wakefield was found guilty of multiple ethical violations, including subjecting disabled children to procedures which were for research purposes and not in their clinical interest, dishonesty, financial issues, etc.. He discusses the costs, both in Mr. Wakefield’s expert fees (about $750,000) and the costs of the GMC investigation. The costs to public health as MMR uptake dropped in the UK and measles came back.

Most people in this subject have seen it in terms of vaccines, measles, infectious disease, autism, or things like that. From the start, I’ve always seen it as being as being an issue of the integrity of science. Whether this paper was true or not and how he could get away with how he got away with. I think it is a depressing picture. It’s been in the region of $10 million dollars to crack a case series of 12 patients. The money involved with the General Counsel hearing, the litigation involved, journalistic fees, and all the staff gone around this to get to the bottom of this little case series of 12 patients. The great bulk of science is not that interesting to the general public and therefore would not create the cause for a newspaper reported to be funded by a newspaper or television station to go after this for such a long period of time and get all this investigative work done with government regulators and what have you. So, you really would have to wonder what else is going on in laboratories and medical centers. The fact that Wakefield thought he was going to get away with it, and the casual way he went about it leads me to think he was working within a culture within which that wasn’t far from unusual, wasn’t far from extraordinary–the kind of misrepresentations he made were far from remarkable by common standards, I suspect. Part of it the nature of human beings; part of it the elusive nature of truth. Part of it is the nature of the publication process.

Vaccines and Autism: A Story of Medicine, Science and Fear

2 Feb

Tomorrow on National Public Radio (US) The Diane Rehm Show will host a discussion of autism and vaccines: Vaccines and Autism: A Story of Medicine, Science and Fear

In 1998 a research paper was published that linked the childhood measles, mumps and rubella vaccine to the onset of autism, a life long developmental disorder. Follow up studies could not replicate the findings casting doubt on its conclusions, and earlier this year it was proven that this original study was, in fact, fraudulent. But the damage was done. Childhood vaccination rates dropped resulting in outbreaks of measles and whooping cough. Funds that would have gone to new research into the causes of autism were diverted, and surveys indicate that about one in five Americans continues to believe that a childhood vaccine can trigger autism. A story of fraudulent medical research and its consequences.

Guests will be:

Seth Mnookin: Author of “Feeding the Monster: How Money, Smarts, and Nerve Took a Team to the Top” and “Hard News: The Scandals at the New York Times and Their Meaning for American Media.” He is a contributing editor at “Vanity Fair” and a former senior writer for “Newsweek.”

Dr. Roberta DeBiasi: pediatric infectious diseases physician at Children’s National Medical Center

Alison Tepper Singer: Founder and President of the Autism Science Foundation, formerly Executive Vice President of Autism Speaks, served on the federal Interagency Autism Coordinating Committee (IACC.)

Arc of California action alert: call your state representative now

1 Feb

Budgets are tight in California, with a multi billion dollar deficit projected. The current plan is to cut developmental services budgets by $750 million dollars. Now is the time to call or, if you can, attend hearings in Sacramento.

If you can call, here are the instructions:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

If you aren’t from California, my bet is your governments are facing tight budgets too. Now is a good time to find out where and how you can support your communities during these tough times.

Dear Friends,

Thank you sincerely to everyone planning to come to Sacramento this Thursday and again next Thursday, and to everyone who has phoned your local state senator and assemblymember.

For those who haven’t yet planned to come or haven’t called yet — the developmental disability community needs your advocacy now!

If you already know about the very real threat facing our community, please just scroll to the bottom of this Action Alert for the specifics about what you need to do to help fight it. If not, read on ….

Governor Brown’s proposed budget cuts would gut the Lanterman Act’s promise that people with developmental disabilities will get the services and supports they need to live full lives in the community.

If the cuts happen, you could lose all of your services. There is no way to know until after they pass, if they do. This is serious.

The Arc and other disability organizations are fighting in the Capitol to protect our community’s services. To limit the damage, we need a strong show of support from the community. That means you and the people you know throughout the state.

The threat is caused by the state’s massive budget shortfall, probably the worst since the Great Depression. To balance the budget, Governor Brown has proposed more than $12 billion in cuts and about the same amount in revenue increases by continuing some existing taxes by five years.

In developmental services, that would mean cuts to services of more than three quarters of a billion dollars — real, new cuts, over and above continuing the much smaller 2009 and 2010 cuts. The total cut this year would include the federal matching funds we would lose as a result of the state fund cuts.

It’s hard to grasp how much a cut that large would reduce the Lanterman Act services, especially because the governor hasn’t said exactly where the ax would fall. This is more than twice the disatrous cuts we suffered in 2009.

We do know that most of the cuts probably would come from imposing what are called statewide “service standards.”

“Service standards” sounds good, doesn’t it? But what it means is simply eliminating the IPP team’s ability to pick the services and supports that the person with the disability needs, the key promise of the Lanterman Act. The 2009 caps on respite care and Early Start are the most recent examples of “service standards.”

Under the Lanterman Act, IPP teams write plans to reflect the specific needs of individuals, but with the cuts being proposed this process would certainly be harmed dramatically.

Real life consequences to real life people throughout the state are the kinds of things you should communicate to the legislative committees in Sacramento and to your local state senator and assemblymember. Tell them the cut is just too big to bear!

What You Need to Do!

The Legislature has scheduled just two public hearings in the cuts before taking action. Here is when and where:

* 9:30 a.m. or later, this Thursday, February 3, Room 4202, State Capitol, Sacramento. This is the Assembly heating
* 9:30 a.m. or later, next February 10, Room 4203, State Capitol, Sacramento. This is the Senate hearing.

We need to fill the rooms with people who can briefly tell the legislators what elimination of services would mean to you and those you care for.

And whether or not you can come to Sacramento, please make two calls to your local state senator and assemblymember this week. When you call, get the name of the person you’re talking to, so you can cal him or her again next time. Think of this as the beginning of a relationship. Tell him or her why you care, and that Governor Brown’s proposed cut in developmental services is just too big.

If you already know someone who works for the senator or assemblymember, either in Sacramento or in your local area, call him or her. If not, please call their Sacramento offices. here’s How to get their numbers:

* Click on The Arc’s Legislative Action Center: http://capwiz.com/thearc/state/main/?state=CA&view=myofficials.
* Enter your ZIP code and click on “Go”
* Scroll down to “State Senators,” and click on it.
* Click on “contacts” and call your senator’s Sacramento office (unless you know someone who works in the senator’s district office).
* Do the same with “State Representatives.”

And I hope to see you in this week and next week.

Thank you for your advocacy.

Greg

P.S. Thanks, too, to everyone who forward my last Action Alert to others. Please forward this one to everyone you know too! We need a very strong show of support to reduce the size of these cuts.

Greg deGiere
Public Policy Director
The Arc of California
1225 – 8th Street, Suite 350
Sacramento, CA 95816
916-552-6619 x16 (office)
916-223-7319 (mobile)
916-441-3494 (fax)

Special Education Court Decisions on the Rise

1 Feb

Christina Samuels at Education Week has a recent piece Special Education Court Decisions on the Rise. She describes a study from Lehigh University which shows that the number of special education court decisions is on the rise:

After two decades of decline, education litigation appears to be on the rise, with special education leading the way, according to an analysis from Lehigh University professor Perry A. Zirkel, an expert in special education law.

Zirkel’s paper on his findings will appear in full in an upcoming issue of West’s Education Law Reporter, but he walked me through the findings.

Using West’s Key Number System, Zirkel tabulated state and federal court decisions by decades, starting in the 1940s. In the 1970s, state and federal education decisions combined reached a high of about 7,600 decisions, but dropped to about 7,300 decisions in the 1980s and under 7,000 decisions in the 1990s. When Zirkel counted the cases for 2000 through November 2010, he expected to see the same downward trend. Instead, the number was higher even than in the 1970s, at about 8,000 reported decisions

The rise is due to an increase in Federal court cases. State court decisions are declining.

It is worth noting that not all cases are brought forth by parents. A story from May 2010 indicates that in California 4 of 9 decisions issued were brought forth by the district.

It is also worth noting that districts tend to prevail. The paper from Lehigh indicates that 65% of cases are won by districts and that this fraction hasn’t changed with time.

In the story from California, in only 1 of 9 cases were clearly won by the family.

In other Special Ed news:

A recent piece at Disability Scoop, Parents Threaten Suit Alleging Special Education Cuts ‘Disproportionate’, discusses how in a Connecticut district, layoffs are focused on special education:

Parents in one Connecticut town are threatening to sue after learning that special educators would bear the brunt of proposed layoffs while other teachers would be unaffected.

Under a budget plan from the superintendent of the Stamford, Conn. school district, 12 special education teachers would be let go in addition to five of the district’s social workers and four speech pathologists. Meanwhile, it would be business as usual for the regular education staff.

A story from Nashua, New Hampshire discusses rising special education costs, especially those involving out of district placements.

Placing special education students in schools outside the district can be expensive and unpredictable.

While most special ed placements run somewhere between $30,000 and $50,000, some cost the district more than $100,000. And when a new student moves in who needs extensive educational services, it can have a dramatic impact on the budget.

Just in the last month, the district has gone from 95 placements to 107, in part because of new students moving into the city, according to school officials.

The story caught my eye for a good statement from the special education director:

“We do everything we can to appropriately educate our kids, but some youngsters have challenges beyond what we can provide,” said Jan Martin, director of special education.

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