LoJack SafetyNet service debuts in Boston

27 Jan

Safety is a big issue in the autism community. The IACC recently added a Safety Subcommittee and is working on a letter to HHS Secretary Sebelius on safety.

So when the Boston Globe put up a story, LoJack SafetyNet service debuts in Boston, I had to check it out. The piece is incredibly short, so, with apologies to The Globe, here it is:

A subsidiary of LoJack Corp., the Westwood company specializing in stolen vehicle recovery systems, announced the Boston availability of its SafetyNet service, which is designed to help quickly find people with autism and Alzheimer’s disease who sometimes wander off.

People with those illnesses are equipped with a SafetyNet Bracelet, typically worn about the wrist or ankle, LoJack SafetyNet Inc., the LoJack Corp., subsidiary, said in a press release. The bracelets emit a radio frequency signal that enables the police to track people if they go missing. The service also provides public safety agencies with the tools and training needed to use SafetyNet effectively, the company added.

“In Massachusetts, statistics show that there are approximately 10,000 school aged children with autism and an estimated 120,000 people with Alzheimer’s,” Kathy Kelleher, vice president of LoJack SafetyNet, said in a statement. “We’re very proud to offer this service, which can provide caregivers with additional peace of mind about protecting their loved ones.”

The SafetyNet service is already available in some other parts of Massachusetts, the company said.

SafetyNet’s website is here. I can’t find a cost for this right now, but I did find this statement on their website:

Thank you for your interest in SafetyNet™ by LoJack®, the leading solution for protecting and rescuing people at risk who wander or become lost. In order to qualify for enrollment in the SafetyNet Service, the client you wish to enroll must have a cognitive condition such as autism, Down syndrome, Alzheimer’s or dementia that puts them at risk of wandering or becoming lost.

In addition, the individual must be under care twenty four hours a day seven days a week. Care may include supervision by a caregiver, guardian, family member or school system.

If the client meets these criteria, please press the tab below to continue

Jury awards family $1.7M for shooting death of autistic man

27 Jan

Family of victim killed by since-fired LAPD officer awarded $1.7 million is the title of a story by the LA Times.

After deciding this week that a former Los Angeles police officer fired for dishonesty was liable for killing a man, a federal jury Wednesday awarded the victim’s family $1.7 million.

Joseph Cruz killed Mohammad Usman Chaudhry early on a March morning in 2008, when Cruz and his partner encountered the 21-year-old autistic man lying in the bushes alongside a Hollywood apartment building.

The police officer argued that Mr. Chaudhry was using a knife to attack, and the shooting was in self defense. Jurors rejected that claim, in part because DNA on the knife came from only one person–who was not Mr. Chaudhry.

This part really bothers me:

After the verdict, the jury was asked to decide how much money, if any, to award Chaudhry’s parents. Attorneys representing Cruz and the city of Los Angeles had tried to limit the size of the award by arguing that Chaudhry had had a frayed relationship with his parents that lessened their suffering.

Lawyers for the family countered that the parents cared deeply for their son, despite the strain on the relationship caused by his autism.

I wonder how much the attorneys relied upon Mr. Chaudhry’s disability in their attempt to discount his value to his family.

Obama’s State of the Union Address 2011

26 Jan

Last night Barack Obama gave the annual “State of the Union” address to the American people. I have to admit, I missed it, so I waited for a transcript to come out. I searched for “autism”. I searched for “disability”. I found nothing. I searched for “education”. There was much on education, but nothing about special education. OK, there wasn’t anything on autism, disability or special education in 2010’s speech either. I don’t think it was in 2009 either.

Aside from my own interests, why would I look to these speeches for mention of autism or disability or special education? It’s because I remember the promises made on the campaign trail. I remember the disability plan that the Obama/Biden campaign had then.

I remember the promise to fully fund the federal government’s commitment to special education:

Fully Funding the Individuals with Disabilities Education Act: Barack Obama has been a strong and consistent advocate for fully funding the Individuals with Disabilities Education Act (IDEA). Congress promised to shoulder 40 percent of each state’s “excess cost” of educating children with disabilities, but it has never lived up to this obligation. Currently, the federal government provides less than half of the promised funding (17 percent). Children are being shortchanged, and their parents are forced to fight with cash-strapped school districts to get the free and appropriate education the IDEA promises their children. Fully funding IDEA will provide students with disabilities the public education they have a right to, and school districts will be able to provide services without cutting into their general education budgets. In addition to fully funding IDEA, Barack Obama and Joe Biden will ensure effective implementation and enforcement of the Act.

IDEA is still not fully funded. The economic stimulus funds did give a one-year boost to IDEA funding (not 100% funded, but a lot more than usual). No long term commitment to keep higher levels has come through.

I remember autism being prominent in the plan:

Supporting Americans Living with Autism Spectrum Disorders: More than one million Americans live with an autism spectrum disorder (ASD), a complex neurobiological condition that has a range of impacts on thinking, feeling, language, and the ability to relate to others. As diagnostic criteria broaden and awareness increases, more cases of ASD have been recognized across the country. Barack Obama and Joe Biden believe we need to research treatments and search for the causes of ASD. Obama has been a strong supporter of more than $1 billion in federal funding for ASD research on the root causes and treatments. Barack Obama and Joe Biden believes we must work to guarantee that Americans with ASD can live independent and fully productive lives and to assure that their families understand and are able to support a loved one with ASD. They will fully fund the Individuals with Disabilities Education Act to ensure that no child with ASD or any other disability is left behind. They will also fight to assure that the government and our communities work together to provide a helping hand to people with ASD and their families.

Obama has a long record supporting people with ASD. In the state senate, Obama sponsored legislation that became law to create the ASD Program – a systems development initiative designed to promote the implementation of evidence-based practices. And in the U.S. Senate, Obama is also a cosponsor of a measure that would expand federal funding for life-long services for people with ASD, authorizing approximately $350 million in new federal funding for key programs related to treatments, interventions and services for both children and adults with ASD.

More money has gone into research, especially a big one-year boost from the economic stimulus funds.

The Obama/Biden campaign had an autism specific agenda document, which included an individual to oversee federal autism efforts:

Appoint Federal ASD Coordinator to Oversee All Federal ASD Efforts: Barack Obama and Joe Biden will ensure all federal ASD activities occur in an efficient manner that prioritizes both research and supports for families affected by ASD. They will appoint a Federal ASD Coordinator to oversee federal ASD research and federal efforts to improve awareness of ASD and improve the training of medical professionals to identify and treat ASD. By establishing one top-level point person to coordinate ASD efforts in the White House, they will ensure that ASD receives the recognition and priority it deserves in the federal government. The Federal ASD Coordinator will also be tasked with eliminating bureaucratic obstacles that may be delaying implementation of important ASD measures and ensuring that all federal ASD dollars are being spent in a manner that prioritizes results. The Coordinator will work with state task forces on ASD to ensure effective communication and collaboration among federal, state, and local agencies.

I remember these things. I bet a lot of readers here do too. We remember. We vote.

More like you than not

25 Jan

Newsweek has a piece, Autism Finds Its Voice, which discusses a documentary about autistic adults, Tracy Thresher and Larry Bissonnette, and their travels and advocacy (which are combined for this film).

In the documentary Wretches & Jabberers, Tracy Thresher and his friend Larry Bissonnette, who is also autistic, travel from Vermont to Sri Lanka, Japan, and Finland to meet with other autistic adults. Both men grew up not speaking: Larry spent his childhood in institutions, while Tracy attended special-education classes where he passed his days doing puzzles. As adults they learned to type and acquired some verbal abilities. Today they are advocates for their condition, speaking (with the aid of their keyboards and assistants) at conferences about the myths and realities of autism. The goal of the tour, Tracy types in the film, is to “make a difference in the lives of people who can’t talk but are intelligent.”

http://c.brightcove.com/services/viewer/federated_f8/271557391

A short, related piece in Newsweek, And if Autism Were a Song, It Might Sound Like This, discusses the music used in the movie.

The music for Wretches & Jabberers was written by composer and musician J. Ralph, who scored the Academy Award–winning documentaries The Cove and Man on Wire. After watching the film, Ralph asked his musician friends to collaborate on the soundtrack. The catch was they couldn’t hear the songs first. Ralph wanted to capture the musicians discovering the music in the same way the subjects of the film discover language as they learn to type and communicate. Several of the songs borrow the phrases of the film’s subjects for their lyrics.

This piece ends with the positive note:

“I have friends that are on the spectrum, but for me this film is about basic human rights.” Including the right to be heard, even when the process is killingly hard.

I hope the film lives up to the message.

The tour so far for the movie is listed here, with more video clips here (which I’ll probably embed soon in a new post, but go look anyway).

California regional center on probation

25 Jan

The California Department of Developmental Services (CDDS) has a simple charger: “The California Department of Developmental Services is the agency through which the State of California provides services and supports to individuals with developmental disabilities.” The CDDS works under the framework of the Lanterman Act. Key to the Lanterman Act is the concept that the state would empower local, private agencies to both manage and provide these services. From the management side, this lead to the Regional Center system. Regional Centers are local nonprofits which contract with service providers to serve the clients (developmentally disabled) in their area.

One of these regional centers is IRC–Inland Regional Center, which serves Riverside and San Bernadino counties (inland from Los Angeles).

The Sacramento Bee (the main newspaper for the State’s capital) ran this story earlier this month: California housing for developmentally disabled has high cost.

Now, I got to admit, I read that title and though, “uh-oh. Here comes another of those stories criticizing services for the disabled. But, here are the first few paragraphs of that story:

In 2006, a state-funded center serving developmentally disabled people spent $2.9 million to develop four houses for its clients in Riverside County.

Just months after the houses were completed, the county assessor’s office estimated the properties were worth $1.1 million less than the Inland Regional Center had paid to build them.

Four years later, they’re worth 31 percent of their cost.

The $2 million loss, as documented by tax records and assessor data, wasn’t just the result of a bad real estate bet made with public money by the regional center, which is part of the state’s system of 21 nonprofits charged with arranging care for developmentally disabled people.

I don’t know what is worse, the idea that services for the developmentally disabled cost too much on their own, or that some sort of mismanagement is costing taxpayers extra in their support of the developmentally disabled.

The Sacramento Bee has followed up recently with the story: Southern California center serving disabled put on probation

The state Department of Developmental Services has placed on probation the largest of 21 publicly funded regional centers serving developmentally disabled people, saying it illegally used state money to develop housing, violated the center’s contract with the state and circumvented a statutory freeze placed on rates paid to care providers.

The department sent a letter dated Jan. 19 about its actions to the center’s board in Southern California.

Ouch. Ouch on so many levels. Yes, as a taxpayer, I hate the idea of my money being wasted. On the other hand, this goes to the fact that organizations like the regional centers hold much more than the obvious (supplying support). They hold a large part of the reputation of the community. In times like these, with the economic stresses we are under, we can’t afford stories like those above.

Apply Now for IMFAR Stakeholder Travel Awards

25 Jan

(January 24, 2011-New York, NY)–The Autism Science Foundation, a not-for-profit organization dedicated to supporting and funding autism research, today announced that it is offering a limited number of grants to parents of children with autism and other stakeholders to support attendance at the International Meeting for Autism Research (IMFAR), to be held in San Diego, May 12-14, 2011. Awards of up to $1000 can be used to cover registration, travel, accommodations, meals and other directly related expenses, including childcare or special accommodations to enable individuals with autism to participate.

IMFAR is an annual scientific meeting, convened each spring, to promote, exchange and disseminate the latest scientific findings in autism research and to stimulate research progress in understanding the nature, causes, and treatments for autism spectrum disorders. IMFAR is the annual meeting of the International Society for Autism Research (INSAR).

“We are thrilled to be able to offer this program again this year and to give back to the autism community in a research-focused way,” said Alison Singer, president of the Autism Science Foundation. “Last year’s award recipients took what they learned at IMFAR and brought it back to their communities in very creative, effective ways.”

To apply, send a letter to grantsATautismsciencefoundation.org describing why you want to attend IMFAR and explaining how you would share what you learn there with the broader autism community. Letters should be sent as Microsoft Word attachments of no more than 2 pages, 12-point type, “Arial” font, with standard margins. In the subject line please write: IMFAR Grant. Letters must be received by February 28, 2011. Recipients will be announced in late March. Additional application information is available at www.autismsciencefoundation.org/ApplyForaGrant.html

Arc of California Action Alert: people needed to show support in Sacramento

25 Jan

This is a California local issue. At the same time, it is not. Budgets are tight all over in these tough economic times. My guess is that organizations quite near you are looking for people to help support actions to preserve funding for services for the developmentally disabled. The Arc has chapters all over the country. The U.K. has the National Autistic Society and other excellent organizations. Now is a time when they could use your help.

Greg deGiere of the Arc of California sent out the action alert today. The economic situation in California is poor, and Governor Brown has suggested large cuts in addition to those the Department of Developmental Services has already absorbed under Governor Schwarzenegger.

Now is a time when we should show support for developmental services in California. The Arc is calling for people to come to Sacramento on February 3 and February 10 for public hearings on the developmental services budget.

Dear Friends,

Our community is facing its most serious threat in many years.

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.

I’ll tell you more about the threat, but first, here’s what I’m asking you to do:

· Come to Sacramento on Thursday, February 3, and Thursday, February 10, the dates of the Legislature’s only public hearings on the developmental services budget. We need to fill the hearing rooms with people who are ready to tell the legislators what the real effect of the earlier cuts has been and what the likely categorical reductions and service eliminations would mean to them and the ones they love.

· Call your local state senator and assemblymember this week and give them the same message.

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. The state could eliminate all the regional centers’ operating budgets and still not cut that much.

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. Let the policymakers know how the services and supports benefit you and the real consequences to your life and the lives of your family members.

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.

Here is the best information I have as of today on the committees’ public hearings:

· Assembly Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 3, Room 4202, State Capitol, Sacramento.
· Senate Budget Subcommittee on Health and Human Services, 9:30 a.m. or later, February 10, Room 4203, State Capitol, Sacramento.

And here’s how to call your local state senator and assemblymember, if you don’t know who they or how to call them:

* 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.”

When you call, get the name of the person you’re talking to. 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.

And I hope to see you in Sacramento next week and the week after.
Thank you for your advocacy.

Greg

P.S. Please forward this Action Alert to everyone you know. We need a very strong show of support this time.

Are you a petitioner in the Omnibus Autism Proceeding?

24 Jan

Families who have filed claims as part of the Omnibus Autism Proceeding, OAP, should read the latest update from the Court.

Many families who filed can’t be found, by the court or by their attorneys. They need to contact the court if they wish to keep their cases going. Otherwise they risk the cases being dismissed.

I find this an interesting point. People have moved on, literally. They filed and they haven’t kept in contact to continue their cases.

Also, the Petitioner’s Steering Committee (the group of attorneys working together on the Omnibus) has dissolved.

The Omnibus is over. Petitioners can either exit the vaccine program, go ahead with the theories the petitioners steering committee proposed and tried (and lost), or come up with new theories.

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.

Large Network of Private Schools Pays $215,000 to Settle Lawsuit Alleging Discrimination Against Children with Disabilities

22 Jan

Below is a press release from the U.S. Department of Justice. A company that runs a large group of schools (preschool/elementary and secondary) settled a case alleging discrimination of disabled students. Even private schools can not exclude children based on disability, “making reasonable modifications of policies to permit children with disabilities to participate fully in the programs they offer”.

WASHINGTON – The Justice Department today announced the settlement of a lawsuit filed to enforce the Americans with Disabilities Act (ADA) against Nobel Learning Communities, Inc. (NLC), a private, for-profit entity that operates a nationwide network of more than 180 preschools, elementary schools and secondary schools. These entities operate in the District of Columbia and in 15 states (Arizona, California, Florida, Illinois, Maryland, Nevada, New Jersey, North Carolina, Ohio, Oregon, Pennsylvania, South Carolina, Texas, Virginia and Washington) under a variety of names, including Chesterbrook Academy, Merryhill School and Evergreen Academy, among others.

In its lawsuit, filed in April 2009 in the Eastern District of Pennsylvania, the Justice Department alleged that NLC violated Title III of the ADA by excluding from its programs children with disabilities, including some children with autism spectrum disorder, Down Syndrome, Attention Deficit Hyperactivity Disorder, and global developmental delays. NLC denies the allegations.

“It is illegal under the ADA to discriminate against children with disabilities. Just like public schools, private schools must make reasonable modifications of policies to permit children with disabilities to participate fully in the programs they offer,” said Assistant Attorney General Thomas E. Perez. “This agreement ensures that children will not be denied quality preschool and other educational opportunities based upon their disabilities.”

U.S. Attorney for the Eastern District of Pennsylvania, Zane David Memeger, noted, “no child should be discriminated against on the basis of disability. All children should have an equal opportunity to attend any school for which they qualify, and schools must make reasonable modifications to policies, practices or procedures in accordance with the law.”

Key provisions of the Settlement Agreement include the following:

· Disability Non-Discrimination Policy: NLC has adopted and will implement a formal policy to ensure that it will operate its programs, facilities, and services in a non-discriminatory manner to comply with Title III of the ADA.

· Publicity: NLC will publicize the Disability Non-Discrimination Policy to its principals, teachers, and other staff at all facilities in the NLC network. The policy will be posted on NLC’s website and member schools’ websites. Paper copies of the policy will be available to any person upon request.

· Monetary Relief: Upon receipt of appropriate releases, NLC has agreed to pay $215,000.00 collectively to the children referred to in the United States’ First Amended Complaint.

· Commitment to Avoid Unnecessary Inquiries: In accordance with the requirements of the ADA, NLC will not make unnecessary inquiries into the existence of a disability or impose or apply eligibility criteria that screen out or tend to screen out students with disabilities from the full and equal enjoyment of NLC’s goods, services, facilities, privileges, advantages, or accommodations.

· Reasonable Modification Requests: NLC will, among other things, engage in a process to consider requests from a student’s parent(s)/guardian(s) for reasonable modifications of NLC’s programs and services when such modifications are necessary to afford NLC’s programs and services to students with disabilities, unless NLC can demonstrate that making such modifications would fundamentally alter the nature of the goods, services, facilities, privileges, advantages, or accommodations at issue.

· Appointment of an ADA Compliance Officer: NLC will designate a person who is knowledgeable about the ADA and its implementing regulations, and who will communicate with parents/guardians on decisions regarding requests for reasonable modifications. In addition, (s)he will review (for compliance with the Disability Non-Discrimination Policy) all decisions not to enroll a student with a disability, or to disenroll a student with a disability.

· Training: At specified periods during the term of the settlement agreement, NLC will train its regional executives, principals and assistant principals on the content of the Disability Non-Discrimination Policy and the terms and conditions of the settlement agreement. NLC will also require all of its teachers and assistant teachers to read the policy and report requests for reasonable modifications to appropriate NLC personnel.

· Reporting and Tracking: NLC will track and report to the United States, at one year and at 18 months from the effective date of the settlement agreement, information including the number of applicants with disabilities and their ultimate enrollment status, as well as the number of requests received on behalf of applicants and current students for reasonable modifications (and whether the modifications were provided).

Those interested in learning more about federal disability rights statutes can call the Justice Department’s toll-free ADA information line at 800-514-0301, 800-514-0383 (TTY) or access the ADA website at http://www.ada.gov .

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