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Proposed California budget includes big cut for developmental services

24 Jan

In Governor Brown Proposes Massive Cuts to Social Safety Net, Marty Omoto of the California Disability Community Action Network writes:

$750 Million Reduction For Developmental Services

The Governor’s proposal for a $750 million reduction in state general fund spending for developmental services includes the 21 non-profit regional centers.

The bulk of that cut will most likely come from the 21 non-profit regional centers who coordinate community-based services and supports to over 240,000 children and adults with developmental disabilities. The regional centers contracted under the Department of Developmental Services (DDS) also coordinate the state’s early intervention program – called Early Start – that serves over 25,000 infants.

The proposed $750 million reduction does not include any lost federal matching funds which would like push the total reduction in spending in developmental services to close to $1 billion (all funds). This reduction is on top of 2009’s permanent and on-going $500 million reduction (including federal funds lost) in developmental services (the bulk of it impacting regional center funded services).

The $750 million reduction in State general fund spending proposed by the Governor would include the continuation for at least another year of the existing 4.25% reduction in payments to most regional center providers and to regional center operations which was scheduled to end as of June 30, 2011. That reduction would, under the Governor’s proposal, continue at least through June 30, 2012 – though the savings or reduction amount actually is permanent.

The reduction also would be achieved through several unspecified measures, including imposing new accountability and transparency measures; and implementation of a statewide purchase of services standards – first attempted in 2002 by Governor Gray Davis.

Many readers here will know of the Regional Centers as the source of data used by many to track autism “rates” over time. The Regional Centers (RC) are California’s method of administering support services to developmentally disabled residents. Each RC covers a large territory and is responsible for purchasing services from private vendors. This method would be in place of a system where the state employs the administrators and the service providers directly.

That said, the recent budget proposal includes $750,000,000 in cuts for services for the developmentally disabled. This will incur an estimated $250M in lost matching funds and is in addition to previous cuts already enacted.

Take the numbers and do the math, using just the $750M amount as a start. Use 265,000 people served by the CDDS. That’s about $2,800 per person. These are not small cuts.

And there is no end in site to the economic woes of the State.

Why does it matter what happens to Andrew Wakefield?

8 Jan

People have been questioning the necessity of these latest revelations about Andrew Wakefield and suggesting that enough is enough or maybe that all this latest round of publicity will do nothing except make him a heroic martyr. This is possible.

However, for a number of reasons I really feel it is vitally important that not only is there some response but that that response comes at least partly from the autism community.

Firstly, I believe it is necessary for there to be a response full stop. These might be the same set of _facts_ that were uncovered during the GMC hearing but the difference here is that for the first time it has been established that the facts against Andrew Wakefield came about through what the BMJ refer to as fraudulent. This is a huge difference. Up until now it could’ve been argued that Andrew Wakefield simply made a mistake. After the events of the last two days, that can never be honestly argued again.

Secondly, there are a set of people who have been at the rough end of Wakefield’s fraud for the last 13 years. A set of people who have struggled to make new parents understand that there is no risk of autism from the MMR vaccine. Doctors. Particularly paediatricians and GP’s. It is vital that by establishing what Wakefield has done as fraud, the media ensure that the message is spread far and wide. They (the media) have something to atone for in this respect, being the original spreaders of the message that the MMR caused or contributed to autism. They now need to recognise their role in the past and help the medical establishment by ensuring Wakefield can never again spread his fraudulent claims via their auspices.

Thirdly, there is another set of people who have been at an even rougher end of Wakefield’s fraud. The sufferers of the falling vaccination rates of MMR. Its been well documented in numerous places, including this blog how people – particularly children – have been injured and died in the UK and US. The concept of herd immunity, no matter what some might claim is a real concept and when it falls, the level of protection falls. When it falls to far then the people who suffer are the very young, the very old and those who for genuine medical reasons cannot be vaccinated. Wakefield’s fraud needs to be spread far and wide in order for people to realise what he is, what he tried to do and what the consequences were in order to have some confidence in the MMR jab.

Fourthly, there is another set of people who have suffered heavily. This set of people are the silent victims of Wakefield’s perfidy. Autistic people. Wakefield and his supporters, TACA, NAA, Generation Rescue, SafeMinds, Treating Autism et al have turned autism into a circus. The aim of the last decade amongst serious autism researchers and advocates has been to

a) Raise awareness
b) Find evidence-based therapies that will help the life course and independence of autistic people
c) Protect the educational rights of autistic people

and getting research monies to meet these aims is long, hard and slow. Andrew Wakefield and his hardcore of scientifically illiterate supporters have actively derailed that process, dragging research monies away from these principled activities and towards their core aim of degrading vaccines and ‘proving’ vaccines cause autism. Wakefield himself has taken over US$750,000 worth of money to pursue a legal battle against the UK Gvmt. Just think of how that money could have enriched the life of just one autistic person.

However, this same set of people claim to be representative of the autism community. They write nonsense books about autism. They hold celebrity studded fundraisers for autism. They participate in rant-filled rally’s for autism. But none of them are really about autism. What they’re about is anti-vaccinationism.

Every one of these activities denigrate autism and autistic people. They take attention away from where it is needed.

We, the true autism community, made up of parents, autistic people, professionals of autistic people need to do two things. Firstly, we need to wrest back control of the autism agenda from these one-note people. Secondly, we need to speak to society at large and say ‘yes, some members of the autism community believed the fraudulence of Andrew Wakefield but not all of us did. Please don’t tar us all with one brush.’

What Andrew Wakefield has done has impacted everyone. We need to make sure that he and people like him can never affect us all in this way again. To do that we need to speak out about him, loudly and as long as it takes.

Upcoming IACC Full Committee Meeting – Tuesday, January 18, 2011 – Rockville, MD

29 Dec

The Interagency Autism Coordinating Committee (IACC) creates the “Strategic Plan” which serves as the main roadmap for autism research funding in the United States.

The IACC is going to have a full committee meeting on January 18 to update the Strategic Plan.

Or, to put it simply, this is where the rubber meets the road for the IACC. If you want to have an impact–and, yes, public input does have an impact–now is your chance to submit public comments. One place to send comments is the address given in the announcemt below: IACCpublicinquiries@mail.nih.gov.

Here is a pie chart of the funding breakdown according to the categories that the IACC Strategic Plan uses.

(click to enlarge).

Figure that research takes 5-10 years to bear fruit, in general. When I take a look at that pie chart and think about what segments have the possibility of really impacting my child’s life in the relatively near future, I would like to see more money spent in areas involving older children, adolescents and adults.

Here is the IACC announcement.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Please join us for an IACC Full Committee meeting that will take place on Tuesday, January 18, 2011 from 10:00 a.m. to 5:00 p.m. ET in Rockville, MD. Onsite registration will begin at 9:00a.m.

Agenda: The IACC will review and approve the final 2011 update of the IACC Strategic Plan for Autism Spectrum Disorder Research.

Meeting location:
The Neuroscience Center – Map and Directions This link exits the Interagency Autism Coordinating Committee Web site and enters a non-government Web site.
6001 Executive Boulevard
Conference Rooms C and D
Rockville, MD 20852

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the webcast or conference call, please e-mail IACCTechSupport@acclaroresearch.com or call the IACC Technical Support Help Line at 443-680-0098.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, materials and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

Professor Simon Baron Cohen endorses Neurodiversity

16 Dec

Neurodiversity, that much misunderstood, much maligned concept has been dragged through the mud for years by people determined to misunderstand it and misrepresent it. We all know who these people are.

However, it also has its supporters and people determined to understand it on either a social or personal level. One such person is Professor Simon Baron-Cohen.

In an interview with the Encyclopaedia Britannica blog Professor Baron-Cohen was asked:

Individuals with Asperger syndrome often use the term “neurotypical” to describe normal people, and in an effort to lessen the stigmatization associated with autism as a medical condition, the Asperger community has initiated the so-called neurodiversity movement. Can you briefly describe the neurodiversity movement and its implications on the diagnosis of autism spectrum conditions?

To which he replied:

The neurodiversity movement has been a very positive influence in reminding us that there is no single pathway in neurological development, but there are many ways to reach similar end-points.

…

Stigmatizing anyone, whether they have autism or any other characteristic, is wrong, since the point about these labels is not to pick out the person in order to make their lives worse, but to help others understand their special needs and qualities.

How nice to see a researcher who _gets_ it.

Society vs Individuals

17 Nov

In amongst yesterdays fun and games, the author of the paranoid piece itself, JB Handley included the following statement:

What parent of an autistic child would write, “my main concern is to create a better world for all people, but especially for people with disabilities. Autism is a great challenge. People with autism deserve respect and support”? Give me a break! A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

I commented briefly on this paragraph by Handley but the more I mulled it over, the more I thought it deserved its own blog entry.

There are those that believe that even though they are parents, they have a responsibility to society and particularly to the society in which their own child belongs. Sullivan’s child, like mine, is autistic and therefore disabled (amongst other things) and so we (and many of our online friends and colleagues) believe that we owe a debt of responsibility in our writing to both this particular society. We believe this for numerous reasons:

1) The betterment of that society is the betterment of the society in which our child resides.
2) Its simply the right thing to do.

However people such as JB Handley clearly believe their own child and no one elses is important. There is no such thing as society in this world view.

This tallies neatly with their other set of beliefs. I’m talking of course about vaccination. To choose to vaccinate is a supremely societal act. When you vaccinate you are saying that not only do you believe in protecting your _own_ child, you believe in protecting the society around him/her. The concept of herd immunity illustrates this perfectly:

More than a hundred years ago, scientists were noting that not everyone had to be vaccinated against smallpox to stop an epidemic in its tracks*. Scientists also noticed that when they were wiping out smallpox, not everyone needed to be vaccinated to have the disease disappear. In many places, it was enough if 80% of the population could be vaccinated and revaccinated in a 4-5 year period.

Why do we do this? Why do we need to protect the herd? We do this because no vaccine is 100% effective. There will always be people who cannot be vaccinated and these people need to be protected. Why? Because its the right thing to do.

Anti-vaccinationism takes the directly opposite path. They claim – as does JB Handley – that it is only ones _own_ child that matters and that society can go hang. By electing not to vaccinate they not only put their own child at risk, they also put the herd at risk. They have forgotten that one of societies greatest accomplishments was learning to work together for the common betterment of us all.

One of the things that speaks most to not just Handley’s set of beliefs but the beliefs of those he speaks to is the idea that anyone could find what Sullivan said as anything but crazy:

A real parent would only have one main concern, the concern we all share: giving our own child the best possible life!

Remember that when these parents march ‘together’ they are nothing of the sort. They are a group of individuals looking out for No.1 and No.1 only.

Planting a tree in Isreal

15 Nov

If you read Orac’s blog, Respectful Insolence, you would have seen the post, Requiem for a friend I’ve never met. I too “knew” Mark. I’ve been trading emails with him for a few years now. I’ve never met him in person, or even heard his voice.

Mark was a fighter. He was fighting the good fight before I even knew about it. Mark was working to make life better for my kid before I had a kid. He was intensely proud of his kids.

Mark’s son let a comment on Liz Ditz’ facebook page:

Please plant a tree in my dads honor in Israel. He would want that to show a sign of growth. Thank you

I took Liz’s suggestion and made a donation to the Jewish National Fund.

Farewell Mark. I wish your family peace in these times.

IACC meeting tomorrow

20 Oct

The Interagency Autism Coordinating Committee (IACC) is holding a regular meeting tomorrow. The announcement is below.

The IACC creates the “Strategic Plan” which guides autism research efforts in the United States. Primarily, the Plan is for use by U.S. governmental groups, but there is input from major private sources of autism research funding as well.

The meeting will be webcast at http://videocast.nih.gov/, and a coference call listen-only line will be available at:

USA/Canada Phone Number: 888-577-8995
Access code: 1991506

The IACC had a “Request for Input” (RFI), a call for public comments. Those comments are online here.

Interagency Autism Coordinating Committee (IACC) Full Committee Meeting

Please join us for an IACC Full Committee meeting that will take place on Friday, October 22, 2010 from 10:00 a.m. to 5:30 p.m. ET in Bethesda, MD. Onsite registration will begin at 9:00a.m.

Agenda: Invited speakers will give presentations on various aspects of autism spectrum disorder research and services and the IACC will discuss plans for the annual update of the IACC Strategic Plan for Autism Spectrum Disorder Research. Speakers include: Dr. Alexa Posny, Dr. Richard Frank, Ms. Wendy Fournier, Ms. Lori McIlwain and Dr. Kevin Pelphrey. The full agenda is available online at: http://iacc.hhs.gov/events/.

Meeting location:
The National Institutes of NIH, Main Campus – Google map imageMap and Directions

The William H. Natcher Conference Center

45 Center Drive

Conference Rooms E1/E2
Bethesda, Maryland 20892

The meeting will be open to the public and pre-registration is recommended. Seating will be limited to the room capacity and seats will be on a first come, first served basis, with expedited check-in for those who are pre-registered.

The meeting will be remotely accessible by videocast (http://videocast.nih.gov/) and conference call. Members of the public who participate using the conference call phone number will be able to listen to the meeting, but will not be heard.

Conference Call Access
USA/Canada Phone Number: 888-577-8995
Access code: 1991506

Individuals who participate using this service and who need special assistance, such as captioning of the conference call or other reasonable accommodations, should submit a request to the contact person listed above at least seven days prior to the meeting. If you experience any technical problems with the conference call, please-mail IACCTechSupport@acclaroresearch.com.

Please visit the IACC Events page for the latest information about the meeting, including registration, remote access information, the agenda, public comment instructions and information about other upcoming IACC events.

Contact Person for this meeting is:

Ms. Lina Perez
Office of Autism Research Coordination
National Institute of Mental Health, NIH
6001 Executive Boulevard, NSC
Room 8185a
Rockville, MD 20852
Phone: 301-443-6040
E-mail: IACCpublicinquiries@mail.nih.gov

The agenda is online, and below.

Time Event
9:00 a.m. Onsite Registration Desk Opens
10:00 Call to Order and Opening Remarks

Thomas Insel, M.D.
Director
National Institute of Mental Health and Chair, IACC
10:10 Review and Approval of July 16, 2010 Minutes
10:15 Alexa Posny, Ph.D.
Assistant Secretary of Special Education and Rehabilitative Services
U.S. Department of Education
10:45 Wandering and Autism: The Need for Data and Resources

Wendy Fournier
President
National Autism Association

Lori McIIwain
Board Chair
National Autism Association
11:15 The CLASS Act

Richard Frank, Ph.D.
Deputy Assistant Secretary for Policy and Evaluation
Department of Health and Human Services
11:45 Neural Signatures of Autism

Kevin Pelphrey, Ph.D.
Harris Associate Professor of Child Psychiatry
Child Study Center and Child Neuroscience Lab, Yale University
12:15 p.m. Lunch
1:00 Public Comments
1:30 Meeting Update: NICHD Workshop “Disparities in the Identification of Children with Autism Spectrum Disorders,” August 19, 2010

Alice Kau, Ph.D.
Health Scientist Administrator
Intellectual and Developmental Disabilities Branch, Eunice Kennedy Shriver National Institute of Child Health and Human Development

Regina Smith James, M.D.
Director
Division of Special Populations, Eunice Kennedy Shriver National Institute of Child Health and Human Development
1:40 Meeting Update: NIEHS Workshop “Autism and the Environment: New Ideas for Advancing the Science,” September 8, 2010

David Armstrong, Ph.D.
Senior Investigator, Chief of the Laboratory of Neurobiology
National Institute of Environmental Health Sciences
1:50 Meeting Update: “Genetic Risk Factors for Autism Spectrum Disorders: Translating Genetic Discoveries into Diagnostics” Symposium, September 1-2, 2010

Stephen Scherer, Ph.D.
Director
The Centre for Applied Genomics, The Hospital for Sick Children
Director
McLaughlin Centre for Molecular Medicine, University of Toronto
2:00 Meeting Update: Simons Foundation Autism Research Initiative (SFARI) Annual Meeting, September 12-14, 2010

Gerald Fischbach, M.D.
Scientific Director
Simon’s Foundation Autism Research Initiative
2:10 Research Update: Study of Health Outcomes in Autistic Children and Their Families

Ann Wagner, Ph.D.
Chief
Neurobehavioral Mechanisms of Mental Disorders Branch, National Institute of Mental Health
2:20 Data Sharing Update: National Database for Autism Research (NDAR)

Michael Huerta, Ph.D.
Director
National Database for Autism Research, National Institute of Mental Health
2:25 Committee Business

* Workshop Update – Services Subcommittee

2:30 Break
2:45 Committee Business

* RFI update
* Portfolio Analysis update
* Discussion: Updating the Strategic Plan

5:00 Public Comments Discussion Period
5:30 Closing Comments and Adjournment

A reminder for neurodiversity

2 Sep

Its been awhile since I blogged about neurodiversity and why it matters to me as a concept. Two recent events in my own life has made me more aware of that than usual.

In the first event, which concerns me directly, I have had to have a change in the medication I take that helps me regulate the manic depression (bipolar) I am diagnosed with. Nobody knows why I need to adjust my medication, only that it needs adjusting and so I shall shortly have Lamotrigine added to the medication regime I have to take.

How does that remind me about neurodiversity? It reminds me that the basic tenets of neurodiversity – respect for the individual differences those with different neurological makeups have – are my best way of being able to move forward in this world. More on this later.

In the second event, which occurred to some of my new family two days ago, myself, my partner and her two daughters – of whom the eldest (she is 4) is autistic – were shopping. Lily began to have a meltdown, a not unknown event in supermarkets for her and one for which we have a carefully worked out strategy. However, this time our strategy was rudely interrupted when a young woman began to shake her head, gawp openly at Lily and make tutting noises. She obviously felt Lily was a naughty child, rather than an autie child.

My partner and I decided that we had had enough of people judging Lily and so remonstrated with this woman. We both explained that Lily was autistic and unable at the age of four to regulate herself in high impact environments but we had to eat and anyway why should we exclude Lily from coming out with us as a family?

The woman waved her hand at us both in a casual dismissal and said we weren’t ‘controlling’ her properly. I smiled through gritted teeth and asked her what she knew about autism. She refused to answer. I asked her again and she walked off with another casual wave of dismissal. My partner’s by now angry shout of ‘shes autistic and a little girl, she can’t help herself’ following her down the aisle.

Of course, this isn’t the first time either one of us have been exposed to such ignorance and I doubt it will be the last. I’m also sure that many parents and autistic people reading this will be familiar with ‘the look’ that can come from such ignorant people who believe they have a divine right to judge others. But it again reminded me of neurodiversity and why I believe in its most basic tenet.

My partner said to me later that what had upset her so much was that Lily (and you can substitute her name for your own or your child’s) would be – to a certain degree either a lot or some – be dependant on the good will of society as she grew up.

People like the woman in Sainsburys are the ‘anti-neurodiversity’. They believe we can and should judge immediately, based on no other evidence than what we see and hear right in front of us. To me, neurodiversity should sit and think, consider the possibilities and act accordingly, based on a desire to help society in the belief that society should do the same for us.

By specifying a desire to include those with differing neurological disorders/disabilities/differences, neurodiversity helps me to feel secure in the world. It also means that I can feel secure in the world my children will inherit.

We will support your foundations

23 Aug

I read a terrible, terrifying blog post post yesterday from Kim Stagliano on the Huffington Post. In it she describes how her daughter has suffered abuse at the hands of a support worker. The story is also coverered by the Connecticut Times.

Police said the girl’s parents were trying to figure out how their non-verbal daughter kept getting bruises and sprained fingers on her right hand when on May 19 they received a call from the nurse at Frenchtown Elementary School that their daughter had arrived at school that morning crying hysterically. The parents then demanded to see the video from their daughter’s school bus.

That video, which also had audio, showed Davila grabbing the girl’s hands and the girl then crying out in pain.

Police said they then obtained DVD copies of the bus videos for April 27, April 29 and May 19. On the 27th and the 19th the driver of the bus was Davila’s mother.

Police said the April 27 video shows Davila, during the bus ride from the school to the girl’s home, putting her hands in the area of the girl’s hands. With each movement the girl’s cries get louder, police said.

This is one of my darkest fears. That my non-verbal daughter or my step-daughter, both autistic, should suffer abuse and not have the language skills to communicate their ordeal. Or even if they did have language skills that they were too terrified to speak out.

On this issue we – the whole autism community can easily stand as one. Whats happened to Kim Stagliano’s daughter is beyond appalling. She writes on the HuffPo of shaking the foundations of those who have hurt, or allowed to hurt, her daughter. I fully agree with her statement and as the title of this blog post implies, I will support her foundations in whatever way I can.

LBRB on Facebook

22 Aug

I finally got around to creating a ‘Fan’ page on Facebook for LBRB as an alternative to the Networked Blog. I do understand theres an unofficial page floating around but please consider this the official LBRB page.

Also please take the time to click the ‘like’ box (below on the right) to add to the number of fans LBRB has (currently…erm…1…me)

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