A Survey for Parents of Kids with Autism to Help Design Parenting Courses

At Lesley University in Cambridge, Mass., educators are planning a set of courses specifically designed to help parents of children with autism spectrum disorders. Elizabeth Stringer Keefe, the coordinator of the Severe Disabilities Graduation Special Education Program at Lesley, has posted a survey for parents to fill out online. It's anonymous, takes about 10 minutes to answer 10 questions, and the responses collected about the kinds of services children are receiving, and what concerns parents have, will guide the course designers.

Click on this link to take the survey.

I learned about this survey after writing to Elizabeth to ask about a day-long program on April 10, 2010, at the university, Realizing the Full Potential of Students with Asperger's Syndrome. The program is for special education administrators, teachers, occupational therapists, speech and language pathologists, psychologists, other educators as well as parents. The fee for the event is $65 and proceeds go to benefit the Asperger's Association of New England, an important advocacy and education group based in the Boston area.

The program includes four speakers, including Ellen Korin, a special educator and author of Asperger's Syndrome An Owner's Manual; Stephen Shore, a professor at Adelphi University and author of Beyond the Wall: Personal Experiences with Autism and Asperger's Syndrome, among other works; Karen Levine, a developmental psychologist and instructor at Harvard Medical School who co-founded the Boston Children's Hospital Autism program; and Ross Greene, associate clinical professor of psychiatry at Harvard Medical School and author of The Explosive Child.

This Asperger's program is the third annual speakers event Lesley has organized. Here is what Elizabeth explained to me in an e-mail:

Having been a classroom teacher, a consultant (I still consult to schools in the area of ASD) and now a university professor, I realize more than ever that training for those who work with children with ASD must go beyond standard teacher licensure. This is an area of specialty that cannot be covered to the extent necessary in teacher licensure programs, unfortunately, and requires a specific skill set and understanding. So, calling for specialized training for those working with kids with ASD is one initiative of my program.

In recognition that the cost of training is sometimes an impediment to teachers, parents and other professionals, I made a second initiative of the program the commitment to provide low-cost professional development for anyone working with this population.

And lastly, a third initiative of my program is to support our non-profit community partners, who support families and professionals outside of school settings. In my view this sets a good example for both the teachers that leave my program and for other colleges and universities. So, the last 3 events I have hosted for the series are charity events for a non-profit, with 100% of proceeds going to support the organization (my time is donated as well). This year I also asked Ellen Korin, and Drs. Levine, Greene and Shore to donate their time and they graciously obliged.

One consequence of the rising incident of autism spectrum disorders is an increase in the number of parent education opportunities. Finding the time to attend one of these events can be difficult—but it's essential to check out the opportunities near you, if only to understand what's going on. Especially in challenging seasons as the parent of someone with autism, it helps to see that these events are happening because it demonstrates that you are not alone, that there are people working to provide information, ideas, approaches to help.

One last point about educational events: if it costs money to attend, make sure to check out the source who is providing the information, to see if it is reputable. Or, simply seek out an event that's free of charge to attend (for it's possible you will have to pay for child care, already).

How the Bernard Madoff Ponzi Scheme Affects People with Autism: One Anecdote

When I was a reporter at a local daily newspaper, our staff spend great energy researching and writing about issues around the world—events like the first Gulf War, say, or budget battles in Washington—and figuring out how to explain those events and how they influenced people's lives where we lived and worked. Finding the right connections took a lot of looking around. It seems like nowadays that one doesn't need to go looking: the events come right to you.

Such is the case with one of Autism Bulletin's readers, a family who is losing a chunk of its respite help for an autistic child because of the infamous Bernard Madoff Ponzi scheme. Madoff, 70, pled guilty in court this week and was sent directly to prison to await sentencing for a scheme in which he bilked thousands of customers of more than $50 billion by promising healthy returns on fictitious investments. The assets that went in were real. But most of it appears gone, as government investigators and lawyers for the clients continue their hunt.

That much you may learned already through the media. The way this affects the family with an autistic child is a simple chain reaction of financial losses, a supply chain of scandal that takes away the respite services. It goes like this:

1.) Madoff's Ponzi scheme bilks investors.
2.) Among the many investors is the Carl and Ruth Shapiro Family Foundation, founded in 1961 as a philanthropic organization, which "supports Arts and Culture, Education, Health and Hospitals, Jewish Causes and Social Welfare programs in Greater Boston and Palm Beach County, Florida."
3.) The Shapiro Foundation announces it will suspend grants for 2009 as a result of its losses in the Madoff scheme.
4.) Among the grant recipients was a community center south of Boston, which provided the respite care. Without the grant money from the Shapiro Foundation, our Autism Bulletin reader reports, the respite program shuts down.

Autism Readings, Resources from Around the Web

I found these articles, resources and related items of interest for families of kids with autism spectrum disorders. I have found the web application Twitter to be a useful way to share interesting items online (at a higher frequency rate than I recently have been able to post articles on this blog). Below are links to the items, which you can also find at Twitter.com/autismbulletin. Below is a sampling from the past two weeks:

1. Autism Society of America: copy of E-mail newsletter
   
   
2. Autism Society of America: national conference, St. Charles, Ill., July 22-25
   
   
3. President Obama includes funding for autism in his FY 2010 budget proposal, via Autism Speaks - read more here
   
   
4. Alabama Autism Task Force report, recommendations here.
   
   
5. Agenda for Flutie Foundation for Autism conference April 7 in Norwood, Mass., read here.
   
   
6. Easter Seals campaign: Urge Congress to support families living with autism today: read here.
   
   
7. New from Newsweek: Autism: How Childhood Vaccines Became Villains
   
   
8. Toronto Jewish community holds disability awareness and inclusion events.
   
   
9. U.S. National Institute of Mental Health say stimulus spending to be guided by this strategic plan: read here.
   
   
10. Autism Speaks calls for $200 million for National Institutes of Health autism funding from U.S. stimulus package
    
    
11. RT @UKAF: The London Guardian recently featured the UK Autism Foundation.
    
    
12. Nevada considers autism insurance bill, news item via KRNV.com
    
    
13. Latest edition of Positively Autism newsletter with ABA-related articles.
    
    
14. New Hampshire Walk for Autism has set up website for event Oct. 4, 2009
    
    
15. From Change.org, college programs for autistic students
    
    
16. Wrightslaw newsletter on special ed funding in federal stimulus package
    
    
17. Autism insurance coverage advocates in Kansas continue to press case in state legislature
    
    
18. Autism programs take a hit, Boston Globe article on special ed budgets
    
    
19. Mass. events calendar for families with special needs kids
    
    
20. A journey of love and discovery as sibling of an autistic sister, from Portland Oregonian newspaper
    
    

Third Annual ABA Autism Event February 6-8 in Jacksonville

The Association for Behavior Analysis International (ABAI) is holding its third annual autism conference on Feb. 6-8 in Jacksonville, Florida, with the theme, "Research to Practice: Making Real Changes in the Lives of People with Autism."

Founded in 1974, ABA International is the professional organization for behavior analysts, a group that has seen demand for its members' services rise with the population of diagnosed children with autism spectrum disorders. (See the organization's website, including this page with information for parents.)

Choices about what kinds of approaches to use for helping children with autism spectrum disorders abound, and information about alternative therapies, diets, treatments and medicines circulate around the web and among parent discussion forums. Applied behavior analysis—backed by research and evidence that when trained therapists with expert supervision deliver services, they help people gain important skills—has gained important support among autism experts, educators and the medical community. See more about ABA in the Autism Bulletin archives.

As a parent, I have found it valuable to attend educational events; it's a way to connect with both professionals who are doing research about autism and meet up with other parents. It's a way to know you are not alone. I attended the ABA International conference when it was in Boston several years ago and came away impressed by the experience and knowledge of the presenters.

This year's event will address topics such as adults with autism, ABA school programs for children, Florida's autism legislation and ways to implement successful treatments for autism. Below is a brief overview of the components of the conference.

This year's conference, "Research to Practice: Making Real Changes in the Lives of People with Autism," will host 15 distinguished ABA experts presenting resources and information that teachers, therapists and parents can use to improve the lives of those living with an autism diagnosis. Presentations will focus on a variety of topics relating to three common themes important to the future of ASD treatment methods:

· Treatment Developments - A summary of the latest progress in behavioral intervention methods and how applied behavior analysts are helping to integrate people those with ASD into the community.

· Success Stories - Using science to guide autism treatment taking a look at the most recent and reliable case studies to help determine the future of those living with ASD.

· In Their Own Words - Personal observations and recommendations from professionals and parent advocates who are most closely affected by ASD.

See below for a rundown of speakers, provided by ABA International:

ABA Autism Speakers Summary

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Massachusetts Considers Autism Insurance Bill

The Massachusetts Legislature is taking up a bill that would require private healthcare policies cover autism services such as Applied Behavior Analysis, physical and occupational therapy, diagnostic and other services. You can see a copy of House Bill 67 below. Rep. Barbara A. L'Italien, a Democrat from Andover, and Senator Frederick Berry, a Democrat from Peabody, introduced the bill earlier this month.

Advocates from AutismVotes.org, an initiative of the advocacy group Autism Speaks, have set up a website for this Massachusetts initiative. It's one of several efforts around the country to raise awareness of the issue of autism insurance, and to press for increased coverage.

The autism insurance issue has been a key legislative effort for autism advocates for quite some time. As awareness about the prevalence of autism spectrum disorders has increased, so have calls for ways to help families who are thrust into finding ways to help their children, with early intervention services and special education programs. (Calls to help young adults and adults have not been as loud, but one can anticipate they will grow as the cohort grows and matures.)

In state after state (see Autism Bulletin archives for articles on South Carolina, Texas, Pennsylvania and other states), the battle shapes up to be one where families and advocates point out the need for services and the health insurance industry argues the cost is too high. Massachusetts is among those states where we can expect to see that conflict play out this year.

Below are two documents (e-mail readers will see links, and blog visitors should see an image of the documents embedded in this article). The first document is a copy of House Bill 67, which calls for insurance coverage for autism services. The second document is an Autism Speaks advocacy paper, prepared in 2007, outlining the reasons for supporting this type of legislation.


MA HouseBill 0067_001 - As Introduced Jan 2009

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Below, find the Autism Speaks document that lays out an argument in favor of autism insurance coverage.

Arguments for Private Insurance Coverage

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