Thursday, November 01, 2007

American Pediatricians Make Big Push for Autism Diagnosis, Awareness; Kits for Doctors, Checklists for Parents

The American Academy of Pediatrics, the national group for 60,000 primary care children's doctors, this week issued a major announcement to educate its members about the early diagnostic signs for autism spectrum disorders, and urge them to look for those signs during baby checkup visits.

This announcement, made at the Academy's annual national conference on Oct. 29, is important because it sets some baseline expectations for what pediatricians around the country should understand about autism, including the essential importance of early intervention services. The documents make clear to doctors (and parents, grandparents and caregivers) the importance of milestones for early childhood development and communications skills. The Academy advises doctors to look for these signs at every well-child visit, or baby checkups. For parents and advocates of young children with autism, the documents also could help set the stage for minimum expectations for early intervention services.

Read the announcement by clicking here. It is impressive in its scope. It includes links to two research studies published in the November 2007 issue of the journal Pediatrics: "Identification and Evaluation of Children with Autism Spectrum Disorders," explains the history of autism, summarizes research so far into possible causes for it, lays out specific criteria for doctors to diagnose autism and explains how to help parents look for developmental delays. The second report, "Management of Children with Autism Spectrum Disorders," establishes the importance of behavioral and educational interventions, including structured teaching methods such as Applied Behavior Analysis (ABA) and Treatment and Education of Autistic and Related Communication Handicapped Children (TEACHH) delivered in low student-teacher ratios "to allow sufficient amounts of 1-on-1 time" for "at least 25 hours per week, 12 months per year."

The Academy said it published both documents as an update and replacement for materials published in 2001.

Diagnostic Signs for Autism Before 18 Months of Age

"Language delays usually prompt parents to raise concerns to their child's pediatrician—usually around 18 months of age," the Academy notes. "However, there are earlier subtle signs that if detected could lead to earlier diagnosis." The signs include:

* not turning when the parent says the baby's name
* not turning to look when the parent points says, "Look at..." and not pointing themselves to show parents an interesting object or event;
* lack of back and forth babbling;
* smiling late; and
* failure to make eye contact with people.

The doctors' group notes:

"Red Flags" that are absolute indications for immediate evaluation include: no babbling or pointing or other gesture by 12 months; no single words by 16 months; no two-word spontaneous phrases by 24 months; and loss of language or social skills at any age. Early intervention can make a huge difference in the child's prognosis. "Autism doesn't go away, but therapy can help the child cope in regular environments," said Dr. Chris Plauche Johnson, a co-author of the reports. "It helps the children want to learn and communicate."

A Heads Up to Doctors About Parents' Use of Alternative Medical Therapies

In addition to developmental checklists, specific guidelines for doctors and explanations of the medical literature about autism and therapies for it, there's an interesting secondary theme the Academy of Pediatrics is working to convey to its members about parents' interest in alternative medical therapies. The message to doctors goes something like this: There's a great deal of media coverage and growing awareness out there about autism spectrum disorders and lots of information on the Internet. Engage parents in discussions, listen to their concerns. Don't dismiss their interest in alternative therapies, even as you share knowledge about evaluating whether a treatment option has evidence to show it is valuable.

Here's a passage from the Academy's announcement:

Pediatricians who treat children with ASDs should recognize that many of their patients will use nonstandard therapies. The report says it’s important for pediatricians to become knowledgeable about complementary and alternative medicine (CAM) therapies, ask families about current and past CAM use, and provide balanced information and advice about treatment options, including identifying risks or potential harmful effects. They should avoid becoming defensive or dismissing CAM in ways that convey a lack of sensitivity or concern, but they should also help families to understand how to evaluate scientific evidence and recognize unsubstantiated treatments.

“Many parents are interested in CAM treatments such as various vitamin and mineral supplements, chelation therapy, and diet restrictions. It’s important for pediatricians to maintain open communication and continue to work with these families even if there is disagreement about treatment choices, ” said co-author of the reports Scott M. Myers, MD, FAAP. “At the same time, it’s also important to critically evaluate the scientific evidence of effectiveness and risk of harm and convey this information to the families, just as one should for treatment with medication and for non-medical interventions.”

Although use of the gluten-free/casein-free diet for children with ASDs is popular, there is little evidence to support or refute this intervention. More studies are in progress, and it is anticipated that these studies will provide substantially more useful information regarding the efficacy of the gluten-free/casein-free diet.

All of this information is available for sale ($70 for members, $80 otherwise) in a package for pediatricians called "Autism: Caring for Children with Autism Spectrum Disorders: A Resource Toolkit for Clinicians," including "screening and surveillance tools, guideline summary charts, management checklists, developmental checklists, developmental growth charts, early intervention referral forms and tools, sample letters to insurance companies and family handouts."

Tuesday, October 30, 2007

California Autism Commission Prepares Legislation for 2008; Recommendations Cover Health Insurance, Education, Services, Awareness, Diagnosis

The California Legislative Blue Ribbon Commission on Autism has published a report with recommendations for legislative action in 2008. The commission's 93-page report (a PDF file), presented in September to Gov. Arnold Schwarzenegger and the state Assembly, issues findings about Californians with autism spectrum disorders, describes the presence of autism services in the state and makes recommendations in seven areas, from early intervention to post-secondary education, from health insurance to teacher training, for addressing what it calls "the ASD public health crisis."

This is a big deal for parents and families beyond the state capital in Sacramento; I would expect advocates for autism services across the country to follow closely what happens in this effort, and to glean both insights and lessons from the recommendations and resulting changes to autism services in California. Autism Bulletin readers are a busy group, but if it's possible for you, reading the commission's report is a good use of time to familiarize yourself with issues and challenges families need to address as they support people with autism and advocate for them. It's a quick education in how a big state looks at the autism issue, how it organizes to address autism needs, and how it frames approaches to important issues like health insurance and education.

Convened for two years after a 2005 state resolution, the panel's report notes that it has sought and won legislative approval to remain active for another year, until November 2008, so it can monitor the progress of work on its recommendations.

The Commission's Seven Recommendations: What They Cover

As in other states (such as Washington and Kentucky) that have formed important autism study groups, the California panel takes a comprehensive approach to providing support services to a growing number of citizens diagnosed with autism. (The California report also asserts the relative strength of services and research institutions compared to other states in the U.S.) The panel's recommendations call on California to:

1. Expand early diagnosis and intervention. The panel calls for establishing a demonstration project to serve as a model for expanding the state's ability to identify autism cases early. "the demonstration project should focus on distressed communities; ensure the timely diagnosis of and intervention for children with ASD; improve collaboration among providers; provide support to families and caregivers; establish a seamless system for service delivery between regional centers and local education agencies; and promote smooth transitions" from birth to kindergarten.

2. Enact health insurance legislation. The panel calls on the state to pass laws, regulations "and other policies to ensure appropriate and equitable coverage for ASD by private health plans and insurers."

3. Establish a muscular public awareness campaign. The panel calls on California to "implement a statewide public awareness campaign on ASD" tied to efforts by the state's Department of Public Health to improve access to autism services.

4. Increase the supply of trained educators for students with autism. This recommendation refers to teachers, paraprofessionals and other school-based staff who need specialized training to be effective.

5. Address the need to resolve disputes about autism services between families and school districts. The report's executive summary calls on California to "empower families and local education agencies to collaborate in establishing appropriate and effective individualized education programs for children with ASD," adding that the state needs to review the process for resolving such disputes.

6. Expand the educational and employment options for youth and young adults with autism. This recommendation includes broadening existing post secondary education programs and setting up new technical education models that can lead to employment with supports. The panel also urges the state to "expand innovative community-based approaches to supported employment, transportation, social-recreation programs, and housing for the ASD population."

7. Train emergency workers and first responders about helping people with autism in a crisis.

Endorsement by Autism Speaks Chapters, Focus on Health Insurance

The commission published its report in September, as required by law. On Oct. 22, representatives for the Autism Speaks chapters in San Francisco and San Diego issued statements endorsing the commission's report. You can read a copy of the San Francisco Autism Speaks chapter's press release by clicking on the web link. The statement zeroes in on the health insurance issue as a key ingredient of the commission's recommendations:

"Autism Speaks commends the Commission and its staff for reaching out in countless ways to parents and advocates across California and for listening to our concerns about appropriate and equitable health care insurance for children with autism," said Kristin Jacobson, Chapter Advocacy Chair, Autism Speaks California. "We believe that all health plans and insurers should provide a full range of services for children with autism, including intensive behavioral treatment, such as Applied Behavioral Analysis, a highly effective, evidenced-based intensive behavior modification therapy."


Also see:

* Autism Bulletin articles relating to health insurance

* House Bill Calls on Congress to Establish Autism Education Task Force

Thursday, October 25, 2007

Resources for Families of People with Autism in San Diego Wildfire Area

The Autism Society of America today published a helpful list of contacts for people with autism spectrum disorders and their families affected by the wildfires raging through the San Diego area. The society urges families needing support to contact local chapters and announced:

ASA and its local chapters in southern California stand ready to assist families and individuals with autism spectrum disorders in finding the resources they need to help them find shelter or assistance during this crisis. ASA's national phone number is 1-800-3Autism.

See Resources in Southern Calif. for Families and Individuals with Autism for contacts for local chapters in San Diego, Los Angeles, Long Beach, Ventura County, and others. Click on the links below for those specific Southern California chapters:

Autism Society of California
(Los Angeles County)
(800) 700-0037 (Main Phone)
Contact: Greg Fletcher
E-Mail: ca-california@autismsocietyofamerica.org


San Diego County Chapter - Autism Society of America
(619) 298-1981 (Main Phone)
Contact: John VanBrabant
E-Mail: ca-sandiego@autismsocietyofamerica.org

Los Angeles County Chapter
(562) 804-5556 (Main Phone)
Contact: Caroline Wilson
E-Mail: asalamail@aol.com

Greater Long Beach/San Gabriel Valley - Autism Society of America
(562) 943-3335 (Main Phone)
(562) 941-1931 (Other)
Contact: Rita Rubin/Gloria McNeil
E-Mail: ca-longbeach@autismsocietyofamerica.org

Ventura County Chapter - Autism Society of America
(805) 496-1632 (Main Phone)
Contact: Jennifer McNulty & Cathi Nye
E-Mail: ca-venturacounty@autismsocietyofamerica.org

Inland Empire Autism Society (Riverside County)
2276 Griffin Way, Suite 105-194
Corona CA 92879
(909) 204-4142 x339 (Main Phone)
Contact: Beth Burt
E-Mail: ca-inlandempire@autismsocietyofamerica.org

Monday, October 22, 2007

$2 Million Massachusetts Pilot Program to Offer Autism Services to 80 Low-Income Children

The Massachusetts Autism Division has unveiled a $2 million model program to provide up to 80 low-income children with autism spectrum disorders with home- and community-based services—as much as $25,000 per year for three years.

Children up to age 9 are eligible for the one-on-one services. Families must apply for the program which applies to children under age 9 who meet the income eligibility requirements of the state's MassHealth state health insurance program for low- and moderate-income families. An announcement from the state says:

The funding for this new Waiver Program is limited and the number of applicants that can be served is also limited. The Autism Division expects that up to 80 low-income children will be able to participate at this time. This Waiver Program will provide one-to-one interventions to help children with severe behavior, social and communication problems through a service called Expanded Habilitation, Education. This service is expected to occur in the child’s home under the supervision of trained clinical staff and will use an intervention method as identified by the family and clinician such as Applied Behavioral Analysis (ABA), Floor Time or a Communication Model. The waiver will also provide related support services such as community integration activities and respite.

The purpose of the Waiver Program is to help eligible children with autism to remain in their homes and actively participate in their families and in their communities. The waiver will serve up to 80 children under the age of 9, with an autism spectrum disorder who meet the clinical criteria for the Waiver Program, as well as, MassHealth financial eligibility, which is based on family income. The Waiver Program provides up to $25,000 worth of services and supports, per year, based on the assessed needs of the child. This Waiver Program is for a 3 year period of time and children are reassessed every year to ensure they continue to meet the eligibility criteria for the program. Participation in the waiver program ends, regardless of the start date, when the child reaches his/her 9th birthday.

Massachusetts families with autistic children who meet the eligibility criteria must apply for this program between Nov. 5 and Nov. 16, 2007. More information is available at the website of the Autism Division of the Massachusetts Department of Mental Retardation. Applications are available in English, Chinese, Creole, Portuguese, Russian, Spanish and Vietnamese. Here's an example of the English form. Contact information for the waiver program is available: call toll-free 1-888-367-4435 or e-mail: DMR.autismdivision AT massmail.state.ma.us.

The state also has set up a website for autism services providers to get information about providing services at home and in the community.

One advocate I spoke to mentioned that there has been some commentary on online discussion forums about this program, about how it's a shame that this program is modest and applies only to low-income families. The advocate also mentioned that there were parents who cited the acute need for families of very modest means to access vital autism-related services. Both are right.

Wednesday, October 17, 2007

Kansas Autism Task Force Looks at Health Insurance Issue

Advocates for people with autism spectrum disorders should take a look at the work going on at the Kansas Autism Task Force, where a group of citizens appointed by the governor have been working to identify the scope of the autism challenge facing the state and what to do about it. In particular, the panel's insurance subcommittee is worth watching because it is tackling the thorny issue of how to share the burden for autism services by engaging the insurance industry. In a report on its September 20 meeting which you can read here in a PDF document, the group states:

Two important points were stressed at the outset of the subcommittee meeting:

1. Early intensive intervention provides dramatic cost savings over the lifespan of an individual with autism.

2. The intent of this subcommittee is not to suggest that the entire burden of financing early intervention be placed on the insurance industry alone. The magnitude of the autism epidemic necessitates that this be a shared responsibility.

This statement asserts two important ideas for both advocates and policy makers: that it's cost effective to provide early childhood autism services because it saves money later; and that there's a collective responsibility for helping people with autism.

The meeting report discusses related issues, including:

* The difficulty that families can have in getting coverage for autism services (one parent, the chief operating officer of a health insurance organization, had to spend more than a year appealing denial of speech therapy coverage by Blue Cross Blue Shield of Kansas).

* Comments from insurance lobbyists who say that covering autism services would raise premiums.

* Notes from a 2004 report from the Kansas Department of Insurance saying autism services coverage would have "no meaningful impact" on overall health care costs in the state.

Michael Wasmer, a member of the Kansas task force and a founder of the Kansas Coalition for Autism Legislation, has issued a call for more testimony from representatives from the health insurance industry for the panel's next meeting on October 25.

The Kansas panel is tackling not just health insurance, but all the important issues—identifying the people affected by autism, best practices for providing services, professional development for those providing services, school-based services and funding—with a goal of recommending legislation to improve availability and accessibility of autism services. You can visit the task force's website to see a summary of its second meeting by clicking here.

Also see on Autism Bulletin:

* Update from Kansas Autism Task Force

* Kansas Appoints Autism Task Force with Goal of Improving Access to Services

* Report with Map of State Health Insurance Laws

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