Tuesday, July 31, 2007
1. Map of State Autism Insurance Laws, Updated
2. Easter Seals and Autism Society Unveil Partnership to Improve Service Access, Delivery
3. Association for Residential Programs for Autistic Adults Recognized
4. Kansas Appoints Autism Task Force with Goal of Improving Access to Services
5. Pennsylvania House Passes Autism Insurance Bill; Fate of Measure Unclear
The most popular tags or "labels" for readers researching articles on Autism Bulletin this month:
2. Health insurance
4. Autism services
Source: Google Analytics
The study, published in the online edition of Environmental Health Perspectives, found that among 29 mothers who lived near agricultural fields where "the highest level of organochlorine pesticides were applied during their first trimester of pregnancy," eight of the children born received diagnoses of autism spectrum disorder. While the sample study is small, and it was unclear how much pesticide exposure these pregnant women received during this period, the state researchers said it warranted more study because the rate of autism prevalence was six times higher than that found in a control group of pregnant women.
"This study is initial research into possible environmental factors in California that may contribute to autism," said Dr. Mark Horton, director of the state's department of public health. "It's important to understand that these preliminary findings do not establish a causal relationship between exposure to these pesticides and autism."
You can find a free copy of the study here, via the Environmental Health Perspectives website. This journal is sponsored by the National Institute for Environmental Health Sciences. A press release from the California Department of Public Health is available via its website.
The autism-environment link is a hot topic among medical and environmental researchers who are looking into potential causes of autism (other lines of inquiry include genetics, and some combination of both). Also see:
* Institute of Medicine to Discuss Investigating Autism-Environment Link
* Discover Magazine Reviews Investigation into Autism-Environment Link
* Studying Autism as a Whole Body Condition, with Environmental Factors
Wednesday, July 25, 2007
If you can spare eight minutes, take the time to hear Sara discuss her experiences growing up since her family learned five years ago that Diego has an autism spectrum disorder. You can find the audio story via this web page at National Public Radio, which broadcast it July 24 on "All Things Considered." NPR picked the piece up from WNYC's show, Radio Rookies.
Sara explains that because her family is Mexican-American and her parents don't speak English, she acts as translator for them at school meetings, tutors for Diego doing his homework, interprets his speech for them sometimes, and also serves and a sounding board for her mother who reveals her deepest fears about Diego's well-being.
The short documentary also finds Sara finding some useful support from another sibling of an autistic teenager. "You shouldn't give up having fun, it's important," Kristen says to Sara.
After this chat, Sara says she does try to have more fun, and has begun to find it easier to express her feelings about her brother. "I know I will never have it easy," she says, adding that she understands she might have to care for Diego when he grows up. "But fun is not everything. I've become understanding, patient and so much more."
Sara's younger sister calls her a hero and someone she looks up to.
"I don't think I'm a hero. I'm just a big sister, trying to set an example," Sara adds.
Tuesday, July 24, 2007
Why would the attorneys single out Mr. Kelly? Because in his job hearing administrative legal disputes between parents and their local school districts, Kelly rarely if ever finds in favor of the parents, The Journal reports. (The story is available only to subscribers of WSJ.com, so I can't link to it.)
The article by Daniel Golden, a Pulitzer Prize-winning reporter, uses Kelly's record as a front-and-center example of how the special education legal system sets up high barriers to parents of disabled children when there are disputes about what services a child needs to make progress in school. This issue has particular resonance for families of children with autism spectrum disorders. The rising number of diagnosed autism cases means more stresses on local school districts which need to provide a "free and appropriate education" for every student. It also means bigger challenges for those districts working to mainstream all kinds of disabled kids (including autistic kids) into regular education classrooms to both expose the students to typically developing children and (as The Journal points out) to save money.
New York's Mr. Kelly is a particular target of special-education parents' anger. A study by Pamela Steen, a Patchogue, N.Y., lawyer for parents, found that he granted full or partial relief to [school] districts in 60 of their 70 appeals, or 86 percent, in 2006 and 2007. ... Advocates for the disabled have complained to Gov. Eliot Spitzer. John Farago, a City University of New York law professor and a New York hearing officer, says Mr. Kelly is "rewriting the rule book" to challenge precedents that enabled parents to put children in private schools at public expense.
As if this weren't discouraging enough, the article reminds readers that recent actions at the federal level make a steep climb steeper for parents who decide to challenge a school district's decision on educational services. The Journal reports that in 2004, Congress amended the Individuals with Disabilities Education Act (IDEA) to discourage "frivolous cases" by allowing school districts to recover legal fees from parents. And a 2005 U.S. Supreme Court ruling (Schaffer v. Weast) put the burden of proof on parents to show that a school district was not providing an appropriate education if a dispute reached the courts. (A link to the Supreme court decision is here; it and other interesting court case links are also on the Autism Bulletin sidebar, under the heading "Recent Court Decisions.")
Given these impediments, it's no wonder that, as Golden reports, the number of special education hearings nationwide dropped by 31 percent in 2005-2006 compared to the previous year. And while one school district representative in this article asserts there are fewer disputes because educational services have improved, there's no evidence provided to back up that assertion.
* U.S. Supreme Court Affirms Parents' Rights In Case Involving Autistic Child
* A Tale from Scranton, Pa.: Classroom Teachers Need More Support If Inclusion Programs Are to Work
Thursday, July 19, 2007
It turns out the law which Governor Bill Richardson signed in March goes less far than what proponents originally sought. The law, one paragraph long, calls for a study. It says:
The human services department, in collaboration with private insurance companies and consumers, shall conduct a study of autism spectrum disorder services, study the systems that serve the population affected by autism spectrum disorders and determine the most appropriate funding mechanisms, including health insurance, state disability insurance or developmental disability waivers or autism waivers. The human services department shall report its findings and recommendations to the legislative finance committee and the appropriate interim legislative committee on or before November 1, 2007.
While this represents less than what proponents sought in the first place, it also could mean a step forward next year, after the human services department makes its report. In other words, New Mexico could end up with a more comprehensive look at the issue of autism services and what to do about them. It will be interesting to see what those recommendations look like and what kinds of reactions they get not only from families of people with autism spectrum disorders and autism service providers, but also lobbyists for business groups and health insurers.
* Map of State Autism Insurance Laws
* New Mexico Senate Passes Bill for Autism Insurance Coverage
* South Carolina Legislature Overrides Veto to Pass Autism Insurance Law
* Texas Governor Signs Autism Insurance Bill
Tuesday, July 17, 2007
You can read the governor's statement, issued July 10, here. The task force appointments come as a result of Senate Bill 138, which Sebelius signed in May. (Read a copy of the bill here, in PDF format.)
One of the task force members, Michael Wasmer, a parent who co-founded the Kansas Coalition for Autism Legislation, said the Kansas group has not scheduled its first meeting, but plans are already underway to gather testimony from parents and families who help care for people with autism spectrum disorders.
Task forces are a popular move by states who have decided that there's a problem but need to generate some understanding about what other states are doing to deal with rising autism caseloads. It's a sign that a state is starting to get political traction on what to do about the need for autism services. (See stories about Mississippi, Kentucky, and Washington, as recent examples.)
The Kansas task force agenda, when its members begin work, is action-packed, according to their charge from the Legislature. It includes studying nine points:
* The re-alignment of state agencies that provide services for children with autism.
* The availability and accessibility of services for screening, diagnosis and treatment of children with autism and services for parents and guardians of these children.
* The need to increase the number of qualified professionals and paraprofessionals "who are able to provide evidence-based intervention and other services to children with autism" -- and incentives to meet the demand for these services.
* The benefits now available for autism services.
* Whether the state should establish an autism registry to provide accurate numbers of children with autism spectrum disorders, and provide data for epidemiological surveys.
* Creating a financial aid program for children with autism.
* Setting up an informational hot line for parents seeking autism services.
* Seeking additional funding for programs that provide autism services, "including funding for the development of regional centers of excellence for the diagnosis and treatment of autism."
* Developing recommendations for best practices for early intervention programs for autistic children.
Monday, July 16, 2007
If you have trouble seeing the map above, you can find it here.
House Bill 1150 must still win approval in the Senate, which has passed its own autism insurance coverage measure. The Associated Press report noted that a spokesman for Senate Republican Leader Dominic Pileggi of Delaware County "said the chamber probably would not take up the measure before the summer recess." As of this writing, it's not clear whether that means the bill is dead for this legislative session or not; Pennsylvania's General Assembly and Governor Ed Rendell today appeared to be ending a long budget battle, already two weeks into the new fiscal year, that included a partial government shutdown.
There was significant momentum for legislation to support people with autism in the state this year. Pennsylvania House Speaker Dennis O'Brien, a Philadelphia Republican, has an autistic nephew and made bolstering services a key personal agenda item. On June 27, the governor issued a statement urging the House to pass the autism insurance bill version already approved by the state's Senate.
Then came two weeks of delays, which advocates for autistic children at the Pittsburgh-based AutismLink.com attributed to Rep. Steve Nickol, a Republican from Hanover, Pa., who has sat on the House finance and insurance committees.
While Nickol's tactics frustrated autism advocates, another group in the state, the Pennsylvania Chamber of Business and Industry, issued a statement July 16 praising Nickol and another Republican lawmaker, Scott Boyd of Lancaster, for working to minimize the impact the insurance legislation would have on businesses. In the end, both Nickol and Boyd voted in favor of the bill along with 192 other representatives.
The PA Chamber's statement is important to note for its argument opposing autism services coverage as a mandate imposed on businesses that raise costs. As in other business lobbying efforts in states like Texas and South Carolina, the business group professes nothing but sympathy for families coping with autism; it's just that businesses can't afford additional insurance costs. The statement, which you can read in full here, includes this passage:
"With employers of all sizes struggling with rising health-care costs and double-digit premium increases, passage of this mandate will result in additional premium increases of at least four percent," said Floyd Warner, president of the PA Chamber.
"The chamber sympathizes with families caring for autistic children and recognizes the complexity of this issue, as it also recognizes the difficulties faced by anyone who is or has a friend or family member battling a specific illness or condition for which new mandates are being proposed," Warner said. "But this mandate was rushed through the legislative process without sufficient discussion."
The Chamber's statement makes it sound like sufficient discussion would of course mean no action that caused business costs to rise; no autism insurance bill.
This is an important issue for parents and families to think about; it gets at a several central concerns related to the delivery of autism services: Who should pay for them? What is the best way to deliver them? How can we as a society handle this issue which often has both educational and health care components? Right now, states are leading the way in discussing these questions.
Note to readers: you can read the text of HB 1150 and see how the voting went by searching for it at the General Assembly's website, at www.legis.state.pa.us. Use the box in the upper right corner that says "find legislation by." Click on "bill number" and enter "HB 1150" in the box. Hit enter.
Pennsylvania Governor Urges Passage of Autism Insurance Bill
Pennsylvania House Elects Speaker with Autism Services Agenda
Thursday, July 12, 2007
The two non-profits said they "plan to pilot programs and initiatives that will help improve the lives of individuals living with autism." In addition to improving access and delivery of autism services, the groups identified three additional focus areas:
* Information sharing. Plans call for establishing an international network of autism services organizations so they can share knowledge, information about best practices and effective treatments.
* Conferences. The groups said they would co-sponsor "a series of research-based consensus conferences" about positive outcomes for people with autism.
* Autism awareness. They plan to work to "increase awareness and understanding of the needs of the autism community."
Leaders of the groups issued statements suggesting the announcement today was the start of a long-term relationship with broad ambitions.
James E. Williams Jr., Easter Seals president and CEO said: "It is a beginning -- our partnership as ASA and Easter Seals. Our job is to provide effective treatment and services to families in communities across the country. But it will take more than our village. To truly address the needs of children and adults living with autism, we must engage the autism community at large -- government, our corporate sector, and our communities working together to assure that everyone living with autism is accepted, and has the very best chance to live, learn, work and play in our communities."
Lee Grossman, president and CEO of the Autism Society, said the groups had been discussing a partnership for more than a year. He emphasized that it should be judged on results: "By far the most important feature of this partnership is how we are measuring its success. If we succeed, more people with autism and the people who live with them, and the people who treat them, will receive the services and supports they deserve. In a generation, autism will be an accepted, and honored, part of the human condition."
Monday, July 09, 2007
The Autism Society's selection is interesting because of its timing. The media coverage and much scientific research are focusing on the very young, and it's easy to understand why: the rising caseload and unexpected prevalence of autism spectrum disorder diagnoses is prompting a lot of attention and many questions. But the focus on young children and their development shouldn't cast a total eclipse over the need for ongoing supports for these children when they grow up -- and for those already grown.
In a statement on NARPA's website, the group lays out five strategic goals for adult residential programs which demonstrate the broad range of serious issues that need addressing. These goals include:
1. Quality assurance and improvement: "Establishing health and welfare safeguards that balance personal security with individual freedom and choice," along with systematic assessments of service provider performance and quality improvement.
2. Building a community infrastructure that provides not only individual case managers, but also allows for the development of new options for individuals and their families.
3. Building capabilities, service delivery models and service provider capacity, to handle a very complex population, including people who have autism and another disability, and extend to those who have committed crimes or dangerous acts.
4. Developing a skilled workforce to support these residential facilities. This includes providing training, better benefits and other efforts to fight high turnover rates and staff vacancies.
5. Developing "responsive financial systems and strategies" to pay for these services.
It will be interesting to check on the NARPAA's progress in the future as they work on this list of goals that represents a collection of serious concerns.
In addition to NARPAA, the Autism Society is honoring Temple Grandin, author and animal expert, advocates Denise Resnik and Jim Adams
Read the full news release related to the Autism Society's conference this week by clicking here.
Saturday, July 07, 2007
The research study is in the July 2007 issue of the Archives of General Psychiatry. A very brief description of the study is here (the full study is available to the medical journal's subscribers). A press release describing the results is here, via the Autism Speaks website.
Early diagnosis is a key issue for families of kids with autism spectrum disorders (ASD). Early diagnosis can lead more quickly to the start of early intervention services. If such services go well, it can mean not only better outcomes for the kids, but it means less costly service burdens later on.
The most recent statistics released by the Centers for Disease Control found that in the 14 states studied, the median age for a diagnosis in most of the states was four years old or later. (See background information here.)
The researchers released a list of four "signs of developmental disruptions" which parents and pediatricians should be watching. Here's the list:
1. Abnormalities in initiating communication with others.
Rather than requesting help to open a jar of bubbles through gestures and vocalizations paired with eye contact, a child with ASD may struggle to open it themselves or fuss, often without looking at the nearby person.
2. Compromised ability to initiate and respond to opportunities to share experiences with others.
Children with ASD infrequently monitor other people's focus of attention. Therefore, a child with ASD will miss cues that are important for shared engagement with others, and miss opportunities for learning as well as for initiating communication about a shared topic of interest. For example, if a parent looks at a stuffed animal across the room, the child with ASD often does not follow the gaze and also look at the stuffed animal. Nor does this child often initiate communication with others. In contrast, children with typical development would observe the parent's shift in gaze, look at the same object, and share in an exchange with the parent about the object of mutual focus. During engagement, children have many prolonged opportunities to learn new words and new ways to play with toys while having an emotionally satisfying experience with their parent.
3. Irregularities when playing with toys.
Instead of using a toy as it is meant to be used, such as picking up a toy fork and pretending to eat with it, children with ASD may repeatedly pick the fork up and drop it down, tap it on the table, or perform another unusual act with the toy.
4. Significantly reduced variety of sounds, words and gestures used to communicate.
Compared to typically developing children, children with ASD have a much smaller inventory of sounds, words and gestures that they use to communicate with others.
"For a toddler with autism, only a limited set of circumstances – like when they see a favorite toy, or when they are tossed in the air – will lead to fleeting social engagement," said Dr. Rebecca Landa, the director of the Kennedy Krieger's Center for Autism and Related Disorders, and lead study author. "The fact that we can identify this at such a young age is extremely exciting, because it gives us an opportunity to diagnose children with ASD very early on when intervention may have a great impact on development."
Landa's research group hopes to establish a standardized criteria for diagnosing autism spectrum disorders among very young children.
This is a tricky task, for the researchers also found that "autism often involves a progression, with the disorder claiming or presenting itself between 14 and 24 months of age. Some children with only mild delays at 14 months of age could go on to be diagnosed with ASD. ... While some children developed very slowly and displayed social and communication abnormalities associated with ASD at 14 months of age, others showed only mild delays with a gradual onset of autism symptoms, culminating in the diagnosis of ASD by 36 months."
The bottom line for families comes at the end of the press release:
If parents suspect something is wrong with their child's development, or that their child is losing skills during their first few years of life, they should talk to their pediatrician or another developmental expert. This and other autism studies suggest that the "wait and see" method, which is often recommended to concerned parents, could lead to missed opportunities for early intervention during this time period.
Fragile X is the most common inherited form of mental impairment and the most common known cause of autism, according to this background information at The National Fragile X Foundation website.
The researchers say that in the future, they hope scientists can replicate what they have found and find ways to help children. "Our study suggests that inhibiting a certain enzyme in the brain could be an effective therapy for countering the debilitating symptoms of FXS in children, and possibly in autistic kids as well," study co-author Mansuo L. Hayashi told the MIT News Office. Hayahi is a former Picower Institute postdoctoral fellow currently at Merck Research Laboratories in Boston.
Friday, July 06, 2007
Organizers include the city's central emergency communications center for 911 calls and the city school department, along with parents of children who have autism spectrum disorders and other disabilities. The program, called Project Keep, for Kids in Edmond with Emergency Priorities, is designed to alert local authorities, such as police and firefighters, to the needs of children with autism and other disabilities at addresses where emergency calls occur. Emergency call dispatchers will be able to access this information via the city's computerized 911 system. The notes about people with disabilities are also available to first responders equipped with computers in their vehicles, according to a press release issued by the city. You can view the press release here.
The Edmond project is the kind of effort that safety experts say is a good idea for families with autistic children who may not respond to commands from police and firefighters in an emergency setting.
Safety Tips for Children with Autism
An Autism Resource for Police
Tuesday, July 03, 2007
A year ago Autism Bulletin published How to Plan a Community Outing with Your Autistic Child, and the points for parents outlined there continue to be valuable. Please take a look and let me know, either through comments at the end of this post, or via e-mail at michaelsgoldberg AT yahoo.com, if you have additional suggestions. I also write these articles with the understanding, and explicit acknowledgment here, that every child is different, has his or her own unique issues and conditions that represent both opportunities and challenges for a successful community outing.
With all that said, and from what I have learned by experience over the past year, I would add the following points to the article linked above:
* The more you prepare yourself, and your child for what to expect, the better. If it's going to be a noisy parade, with fire engines and clowns and horses and marching bands, look for ways -- in words, photos and videos if easily available -- to share that information with your child.
* If something unexpected happens, make a show of shrugging it off. Hey, they squirted water at us from the parade float! That's OK! Let's go dry off and then we'll have more fun! It may not work, you may not recover, but then again, you might.
* If you have resources available to hire help, try it. This means hiring for an hour or two a teacher from school or ABA services provider or someone else who knows your child -- and someone who understands autism and knows how to shape positive behaviors. If community outings, a visit to an important family event at a house of worship or even a sibling's birthday party is important to your family, it's worth getting assistance to make it a success. There's no problem in introducing your family's friend to other friends and relatives if it makes the outing more enjoyable for your child and more relaxing for you.
* Take stock, have some perspective on where you've been. Think about where your family was a year ago, what you could do and what you didn't dare do. Where did you go last year at this time? Where was the last public setting meltdown, and what were the circumstances? Have you tried to do that kind of thing again more recently? Was it the same experience or was it different? How? Why?
I hope for everyone reading this that when you think about those questions you will find some positive signs, some reassurance that your efforts are paying off.
Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently