Thursday, May 31, 2007

Texas Lawmakers Pass Bill To Cover Some Children's Autism Services

The Texas Legislature has approved a bill to amend the state insurance code to require some health plans to provide coverage for autism-related services. The bill, passed May 27 by the Senate and May 29 by the House, was submitted to Gov. Rick Perry's desk on May 30. Its mandate to cover services applies to children between the ages of 2 and 6.

You can read text of the bill, H.B. 1919, via the Texas Legislature website, by clicking here. The bill's text specifically cites what kinds of autism-related services must be considered, and includes a wide range from ABA to nutritional supplements. A relevant passage of the bill states:

The health benefit plan must provide coverage ... to the enrollee for all generally recognized services prescribed in relation to autism spectrum disorder by the enrollee's primary care physician. ... Generally recognized services may include services such as:
1. evaluation and assessment services
2. applied behavior analysis
3. behavior training and behavior management
4. speech therapy
5. occupational therapy
6. physical therapy, or
7. medications or nutritional supplements used to address symptoms of autism spectrum disorder.

While the Texas bill limits the ages for children who can benefit from this coverage, it goes farther than some other states in terms of spelling out exactly what kinds of services are covered. It will be interesting to see what the governor does.

Also see:

* South Carolina Lawmakers Poised to Pass Autism Insurance Bill

* An updated, annotated map for Autism Bulletin readers of states that have passed or are considering bills that would provide some coverage for autism services. Click here if you see this via e-mail, or view the map below.

Most Popular Articles on Autism Bulletin, May 2007

The top five stories posted in May 2007:

1. 17 States Require Some Insurance Coverage for Autism Services, Recent Survey Finds

2. Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions

3. Colorado Passes Early Intervention Plan That Applies to Autism, and More Legislative News

4. Question for Parents of Autistic Kids: How Often Do You Take a Break?

5. U.S. Supreme Court Affirms Parents' Rights in Case Involving Autistic Child


Most popular tags or "labels" for readers researching Autism Bulletin articles this month:

1. ABA
2. Asperger's
3. Autism services
4. Health insurance
5. Legislation

SOURCE: Google Analytics.

Wednesday, May 30, 2007

Poll: Where Do Dads of Kids with Autism Get Their Emotional Support? Plus Results of Recent Poll

With Father's Day coming in a couple of weeks, I am wondering where fathers of children with autism spectrum disorders go for the emotional challenges they face. See the poll question below and vote. Please share it with other families and fathers who can help us understand what they find. I ask this question with the knowledge -- and gratitude -- that it's mom who frequently takes the lead on management, logistics, program direction and other functions that make parenting a child with autism sound and feel like running a small business. (Read this article for an argument in favor of getting mothers respite breaks.) But dads need to figure out how to deal with the challenges they face, too and so I'm asking this question.

If for some reason you cannot see the question, or cannot click on a voting option, you can also find the poll question here.



Where does the father in your family get the most support for the emotional challenges of parenting an autistic child?






































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Results of recent Autism Bulletin poll on thanking teachers:

What do you do to show your appreciation to teachers who make a difference in your autistic child's life? (Percentages based on 18 responses. See related article here.)

Tell them what a positive difference they make in my child's life, and mine: 22 percent.

Write them notes of thanks: zero.

Buy them gifts: 5 percent.

Make donations in their honor: 5 percent.

Do more than one of these things: 61 percent.

I don't know what to say, or don't have time, to do any of these things: 5 percent.


Please feel encouraged to comment on the questions raised here, by posting a comment below or e-mailing me at michaelsgoldberg AT yahoo.com.

Tuesday, May 29, 2007

New York City to Unveil $3 Million Autism Support Program

Members of the New York City Council plan to announce a $3 million program to pay for support and referral services for autistic children and their families throughout the city. The announcement is scheduled to be made at a press conference on Wednesday, May 30, by David I. Weprin, chair of the city council's finance committee, and Hiram Monserrate.

The goal of the program is to provide "wraparound services" for children with autism spectrum disorders outside of school and to provide public awareness information about diagnosis and early intervention and referral services to families across the city, according to a spokeswoman for UJA-Federation of New York. (UJA stands for United Jewish Appeal. The UJA-Federation is one of several nonprofit and advocacy groups taking part in the announcement of this program; others include New York Families for Autistic Children, Autism Speaks, Jewish Board of Family and Children's Services, Cerebral Palsy Associations of New York State Life's WORC, Lifespire, and the Autism Society of America's Bronx Chapter.)

The program is slated to last one year, the city budget year that starts after June 30. Groups to provide services would be chosen when the budget year begins. City agencies then would be expected to determine where to use the money for wraparound services in New York City.

Monday, May 28, 2007

Mapping the 23 States Which Have or Are Considering Autism Insurance Rules

Children with autism spectrum disorders often require a lot of one-on-one services (30 hours per week for example, in the case of a preschool student) to enable them to learn and develop new skills. So with a rising number of autism diagnoses around the nation, and a growing demand for these services, it's not surprising to find that a number of states have considered putting laws on the books that relate to autism and health insurance coverage.

The annotated map below shows the 23 states mentioned in recent months in Autism Bulletin articles as either having laws on the books for health insurance or having governors and state lawmakers discussing proposals to provide more coverage for autism-related services. Click on one of the red pins posted at a state capital to see a brief summary of what that state requires. For readers who are new to these online Google maps, you can use your mouse to click on the map and move your view to a certain part of the country; you can also use the scale in the upper left corner of the map and click on "+" to make a view of the map bigger, or "-" to make it smaller. (If you are an e-mail subscriber and don't see the map, please click here.)





A key question is, what do these laws or proposed laws cover?

The answer is, it depends on where you live, and in many cases, what the standards or mental illness health insurance coverage are for the health insurers in your state. The reason for that second point is that many of the laws written so far emphasize that health insurers must not discriminate against autism patients and must treat them as they would patients with a mental illness. (This applies to more than 11 states on the map.)

But what does that mean? Does that cover the one-on-one sessions for applied behavior analysis (ABA) that many young children find beneficial, for example? Does it cover speech therapy from which many kids trying to learn how to talk can benefit? If it does cover these sessions, are they limited to X number of sessions per year? (And if that's true, is mental illness the right metaphor for health care coverage for autism? It's not like it goes away after a certain number of therapy sessions.)

Costs are also a factor; states such as Connecticut and Kentucky put caps on spending per child per year. Many states also restrict ages up to which insurers need to reimburse families.

Indiana and South Carolina (where the legislature passed a bill last week) appear to have the most comprehensive plans; one reason: both explicitly tie autism services to medical diagnosis and prohibit capping costs for coverage.

Please let me know if you find this map useful. If you have information to add from your state, please leave a comment on this blog post, or write to me at michaelsgoldberg AT yahoo.com.

Thursday, May 24, 2007

South Carolina Lawmakers Poised to Pass Autism Insurance Bill

The South Carolina House of Representatives is scheduled to pass a bill on Friday, May 25 that would require health insurance coverage for autism and other pervasive developmental disorders. The bill has passed the state senate April 27. It is not clear as of this writing what, if any action, Governor Mark Sanford plans for this bill.

The bill calls for coverage for autism services for all children diagnosed with an autism spectrum disorder by the age of eight, and to last through the child's sixteenth birthday. The bill if approved would become effective July 1, 2008. A key nugget of the bill's text says:

A health insurance plan as defined in this section must provide coverage for the treatment of autism spectrum disorder. Coverage provided under this section is limited to treatment that is prescribed by the insured's treating medical doctor in accordance with a treatment plan. With regards to a health insurance plan as defined in this section an insurer may not deny or refuse to issue coverage on, refuse to contract with, or refuse to renew or refuse to reissue or otherwise terminate or restrict coverage on an individual solely because the individual is diagnosed with autism spectrum disorder.


You can see the text of the bill (number S. 20), here, via the South Carolina General Assembly's website. Lawmakers report in this documentation that they expect the bill to cost an estimated $10.6 million per year, with about 60 percent to be borne by employers who provide health insurance; the rest would come from federal funds paid to the state. To put the bill's price tag into perspective, Gov. Sanford proposed a $6.5 billion budget for the state this year. If the estimate for the health insurance bill is accurate, that cost would amount to 1.5 percent of the state budget.

That's not a trivial amount, especially when you're talking about employers bearing much of the cost. But one could argue that the investment in children's development will help save money down the road, because the children who receive effectively delivered services will have less intense needs when they get older.

That's one argument; clearly there were enough arguments in favor of the bill to win unanimous support in the South Carolina Senate and House.

Another name for the bill is Ryan's Law, in honor of the six-year-old son of Lorri Unumb, a leading advocate for the bill.

Tuesday, May 22, 2007

Missouri Convenes Special Autism Panel

Missouri has convened a "Blue Ribbon Panel for Autism" to determine the extent of autism services in the state and to recommend a road map for the future.

Michael R. Gibbons, the acting state Senate president, said the 16-member committee "will help us determine where we are today and where we need to be in the 21st century to help provide the best quality of life for individuals and families affected by autism spectrum disorders." The panel includes state lawmakers, as well as parents, grandparents, autism service agency representatives and medical doctors. You can read an April 26 press release about the panel here.

Ginger King Luetkemeyer, a volunteer and advocate for autism services who is helping the Missouri panel do its outreach work, wrote to say that the panel intends to hold hearings throughout Missouri, from June to October. The goal is to gather information in preparation for a report with recommendations to the state Senate by October 31.

"Now that the panel members have been confirmed and announced, we will do everything from arrange the hearing sites and locations, to arrange for the expert testimony," she wrote. "We also are trying to inventory what other states have done and are doing, in their state agencies and in legislation."

The need to improve autism-related services received some attention earlier this year when Missouri Gov. Matt Blunt cited the issue in his state of the state address. Read more background on that here.

Recent Additions to Autism Bulletin Sidebar

For readers who may be new to Autism Bulletin, there's a growing list to the right of the articles posted here that provides links to resources, documents, books and other websites that could be helpful to parents and family members of a child with autism. Recent additions include:

  • The Supreme Court's May 21 ruling in Winkelman v. Parma City School District, affirming parents' rights to represent themselves in court to argue for special education services for their child.

  • Diagnostic criteria for autism spectrum disorders, copies of the American Psychiatric Association's manuals, past and present, via Unstrange.com.

  • A list of recent news summary articles that have appeared on this website.

  • A Google search engine box, that allows you to search both this website and the web at large.

You can find these and more resources here. I'm always looking for suggestions that would make Autism Bulletin more useful to readers. Drop me a line at michaelsgoldberg AT yahoo.com.

Monday, May 21, 2007

U.S. Supreme Court Affirms Parents' Rights In Case Involving Autistic Child

The U.S. Supreme Court today ruled that federal special education law grants parents "independent, enforceable rights" separate from their children and therefore they can pursue those rights in court -- without a lawyer if necessary -- so they can advocate for their child to receive a free and appropriate education.

The court's 7-2 ruling was a resounding victory for Sandee and Jeff Winkelman, who fought for the right to argue in court for appropriate educational services for their autistic son Jacob. The Supreme Court overturned a lower court ruling that said parents could not make such an argument without a lawyer who would represent their child; in other words, that parents did not have legal standing on their own under special education law, known as the Individuals with Disabilities Education Act (IDEA). Now the case goes back to a lower court which can decide the question of whether Jacob was receiving a free and appropriate education, and whether the school district of Parma City, Ohio, must repay the family for its privately paid tuition bills.

The case is called Winkelman v. Parma City School District and the decision is available online here (in a 30-plus page PDF file). Justice Anthony Kennedy wrote the decision, joined by justices John Paul Stevens, David Souter, Ruth Bader Ginsburg, Stephen Breyer, Samuel Alito Jr. and Chief Justice John Roberts. Antonin Scalia wrote a dissent, supported by Clarence Thomas, that said parents had an interest in their child's education, but not a legal right to argue in court.

The decision is important for all families in the United States who have a disabled child, and goes far beyond autism; still, this situation has a particular resonance for parents with an autistic child. It's clear from the court records, the oral arguments and media coverage of the Winkelman's case that both the paucity of autism services in the local school setting, combined with the expensive nature of what the parents saw as appropriate autism services for their son, led the family to fight all the way to the Supreme Court.

At the same time as parents like the Winkelmans felt cornered by circumstances, school districts have been arguing in court that parents have no legal standing to represent themselves in court, as this story from The New York Times tonight notes.

The Supreme Court said clearly that such arguments are wrong. The Times story also points out that a key point of the Winkelman decision cites a principle from "one of the oldest federal laws on the books, derived from the original Judiciary Act of 1789, " which provides that "in all courts in the United States parties may plead and conduct their own cases personally and by counsel."

Sandee Winkelman said in an interview with The Cleveland Plain Dealer that the ruling "is more than I could have asked for... Every parent should be celebrating today." (See that report here.)

Justice Kennedy's decision is straightforward in its explanation that Congress wrote the IDEA to give parents the right to be involved as team members who work to develop an individualized education program, or IEP, for their child, who have the right to a free and appropriate education along with their child, and who have the right to an appeals process if they feel their rights are abridged.

Also see:

Supreme Court Hears Case of Ohio Parents of Autistic Child

Thursday, May 17, 2007

Why Families with an Autistic Child Need Many Mother's Days: A Brief Follow-Up

Sher, the mother of an adolescent boy with autism, wrote a heartfelt message in response to the survey question asking how often parents went out with their spouse or a friend for pleasure. (See article with the survey question here and an article that includes survey results here.)

"Parent supports have not fully been explored, except for the occasional ‘venting group’, or the oft-spoken advice to 'take time out for yourself,'" Sher wrote. "But being a parent of a child with autism is to live in the ‘fight or flight’ mode every day." She continues:

We give 100% of our selves, 24/7, as though every moment is a crisis. Desperation drives us to find out what this thing called autism is, what causes it, and what can be done about it. When my son was born in 1994 until 2002, when I burned out on autism therapies, there was no going out for me, no time alone with spouse (much less by myself)... I resented my husband because he could go to work, my other children for the demands they made on me, and my son with autism most of all, because I didn’t know how to help him.

I had to teach myself how to go out alone or with another, and drill myself that enjoying myself away from my children was OK. Why did I think it was so selfish? Finally, I figured out that going out occasionally actually made me a better mother, not less of a mother. And it is better to give yourself permission to do good things for yourself than living in that nightmarish isolation, driven to be a crazy person by something called autism. Sher

Documentary, "Autism: The Musical," Seeks to Show Kids and Parents With Sympathy (Not Pity)

"Autism: The Musical" is a documentary that uses a theater production in which five autistic kids from Los Angeles are players to shed light on the lives of the children and their families. The 94-minute movie, directed by Tricia Regan, debuted last month at the Tribeca Film Festival. It is scheduled to play at the Newport Film Festival in Newport, R.I., in June.

Both the film's own writeup (an excerpt is below at the end of this post) and a recent review in the online edition of Variety suggest that this film aims to portray both the challenging and positive aspects of family life and experiences with a son or daughter on the autism spectrum.

From Variety's review, complete with Hollywood shorthand jargon, (read the whole article here):

"Regan primarily focuses on five children and their parents, and not the least of the pic's accomplishments is that all five kids' one-of-a-kind quirks and temperaments are fully experienced without excessive reference to medical terminology or anything extrinsic. By the time it's revealed that one of the fathers is [singer-songwriter] Stephen Stills, the information seems entirely secondary to his son's unique personality and encyclopedic knowledge of dinosaurs. With nary a throbbing violin (though one boy plays the cello), pic manifests each child's value, minimizing neither their undoubted potential nor their very real problems."

This marketing writeup below, written for a general public audience which may know little or nothing about autism spectrum disorders, comes from the film's website:

Ten years ago, autism was a relatively rare disorder, diagnosed in one in 10,000 children in the United States. A decade later, one in 150 children is diagnosed with some form of the disease. ... Autism: The Musical counters today's bleak statistics with one woman's optimistic pledge to lead a group of autistic children in defying diagnosed expectations, by writing, rehearsing and performing their own full-length musical. Following five Los Angeles children over the course of a year, director Tricia Regan captures the struggles and triumphs of their family lives and observes how this musical production gives these performers a comfort zone-often for the first time-in which they can explore their creative sides.

I've put in a request to the filmmaker to see where else the movie is scheduled to play and will report back when I hear.

Wednesday, May 16, 2007

Colorado Passes Early Intervention Plan That Applies to Autism, And More Legislative News

Colorado Governor Bill Ritter on May 15 signed into law a measure that mandates private health insurers contribute an estimated $2.8 million into a state fund for early intervention services for children up to three years old with developmental delays. Read a short news release from the governor's office here. Read a copy of the legislation, known as Senate Bill 4, by clicking here (it's a 29-page PDF file).

Thanks to Betty Lehman, executive director of the Autism Society of Colorado, who wrote to explain that this bill, supported by the Society and many other advocates, is designed to improve early detection, diagnosis and treatment for children with autism in Colorado. The bill's language applies to all children, from birth to age 3, who fall under the Individuals with Disabilities Education Act (IDEA), the federal law that mandates free and appropriate education for children with disabilities.

Betty Lehman also wrote to remind Autism Bulletin readers that while a number of states around the country are considering legislation to make health insurers expand coverage for autism services, especially for young children, Colorado has had a law in place since 1993 that affords health insurance coverage for autism as insurers would cover other medical conditions. Read that law online here.

In other state legislative news:

* The Oregon House of Representatives approved a measure that would require health insurers to cover pervasive developmental disorders, including some forms of autism, by a vote of 53-0 on May 12. You can read a short news article about the vote in the Statesman Journal, by clicking here. See the language in the bill, as it was originally submitted, by clicking here on the Oregon Legislature website.

* Wisconsin's Senate Leader is rallying support for her bill to require health insurers to cover some autism services for children. In this May 15 Wisconsin Radio Network report, Senate Majority Leader Judy Robson asserts that money spent on intervention services early in a child's life can save money down the road:

Robson says this is a win-win-win legislation. She explains early intervention is effective, it diminishes the waiting list, and saves taxpayer dollars in the long-run. For every dollar spent on intensive behavioral treatments for the autistic child, the state would save 19-dollars on long term costs. 49 legislators from both sides of the isle are cosponsoring this legislation. "It's not a Republican bill, it's not a Democrat bill. This is a people bill and a children's bill."

* Ohio lawmaker, father of autistic daughter, seeks funding for early autism detection. Rep. Kevin Bacon, a Republican from Columbus with a 7-year-old daughter with atypical autism, won support to include $800,000 in the state budget "to educate pediatricians and others on early autism detection," The Associated Press reports May 14. See this short news item from the AP via WTOL-TV in Toledo.

Also see:

* 17 States Require Some Insurance Coverage for Autism

* Wisconsin Governor Calls for Autism Coverage

* New Mexico Senate Passes Bill for Autism Insurance Coverage

Monday, May 14, 2007

One Indicator Suggests Autism Specialists Market Is Heating Up; Plus, How Do You Thank Your Autistic Child's Teachers?

Wanted: ABA consultant, Maine, pays up to $35,000. Behavior analyst, Hawaii, pays up to $65,000. ABA therapist, Virginia, pays up to $55,000. Senior behavior analyst, Texas, pays up to $55,000. Small group intervention coordinator, Washington State, pays up to $65,000.

The job openings above come from the online bulletin board at the Association for Behavior Analysis International, and they appear to be growing in number. On April 10, the group's bulletin board listed 100 openings. On April 24, it held 132 jobs. May 9: 160 jobs. May 14: 176 open positions. It's the season of course when schools are planning for September's new classes and so it makes sense for more openings to emerge like so many spring flowers. It's also fair to speculate that the interest in the field is rising with the reported prevalence of autism spectrum disorders, and with those reports of rising caseloads come a rising demand for services.

Wanted: ABA Program Consultant (primary focus: autism), Virginia. Autism Consultant, Missouri. Behavior Analyst (primary focus: autism), California. Behavior Therapist, (primary focus: autism), Florida. Behavior Analyst, (primary focus: autism), Northern Ireland. Director, Kentucky Autism Training Center. Program Director, May Center for Child Development (primary focus: autism), Massachusetts. Psychologist (primary focus: autism), Melbourne, Australia. Assistant Professor of Special Education, Applied Behavior Analysis, New England states.

At the February 2007 ABA International conference in Boston, organizers said they expected a few hundred attendees. More than 1,600 showed up, including more than a few parents. And so recalling that crowd, taking note of the rising media and public interest in autism as a social and public policy issue, I contacted ABA International to see if they would talk about trends they may have spotted on the jobs bulletin board, but haven't heard back yet. If you have observations to share, or know someone who does, comment here or write to me at michaelsgoldberg AT yahoo.com. We can continue the discussion.

The discussion about autism specialists -- those teachers, behavior therapists and other professionals -- is an important topic. What makes the good ones good? What makes a staff supervisor effective? How do we encourage them to stay in this field? How do we attract more talented young people?

It's important because from what I've seen in the past few years the most important people a parent meets -- by a wide margin -- are those who spend time with our children, helping them learn. The good ones are very special -- so special that one fumbles for the right ways to express appreciation for the work they do. And so I'm asking you here for what approach you use, in the question below. If you see a choice not listed, you can visit Autism Bulletin to post a comment, or you can go to this website to view the poll question and vote and comment.



Thursday, May 10, 2007

Why Families with an Autistic Child Need to Celebrate Mother's Day Frequently; Plus Some Suggestions

An Autism Bulletin reader wrote to say that her young child had recently received a diagnosis of "pervasive developmental disorder -- not otherwise specified" (PDD-NOS), and she was eager to learn what she could do to make a difference, not only for her child, but for the autism community as a whole.

There are many answers to this question, but in this post just before Mother's Day, let's discuss one important step that can be easy to overlook: take care of yourself.

Raising a child with autism presents a set of challenges that comes with on-the-job training: the extra demands on your time to learn what's going on here; the skills to ask questions so you can evaluate courses of action; project management and scheduling prowess to arrange for educational and other kinds of services; and more (like maybe there are other people and events in your life needing attention, other children, for example, or spouses, parents, jobs).

This is a stressful life, researchers have found. Two recent studies in the journal Pediatrics from the American Academy of Pediatrics suggest that not only is raising a child with an autism spectrum disorder more stressful than raising a typically developing child -- it's more stressful than raising a child with other kinds of disabilities or special health care needs without developmental problems. A study published in February (see citations below) noted:

The findings reported here support and inform the need to consider family effects in planning for services of children with autism. We found that overall, the most knowledgeable parents and other adult caregivers of children diagnosed with autism reported high levels on several indicators of stress and aggravation.


The second study, just published May 1 in Pediatrics, focused specifically on mothers of kids with autism and concluded that while these moms are "highly stressed and more likely to report poor or fair mental health than mothers in the general population," they also show a great deal of resilience. "Mothers of a child with autism were more likely to report a close relationship [with their child] and better coping with parenting tasks and less likely to report being angry with their child." The researchers add: "this suggests that families use compensatory strategies to maintain family stability in the context of poorer mental health and higher stress." They also say they want to study this dynamic more to understand it better.

Maybe you're living this, and so these research findings are not news to you (or at least not surprising). That's fine. But if that's so, what do parents do to relieve that stress? Not enough, suggest the respondents to the poll question posted here May 4. So far, there have been 40 responses to the question, "How many times have you gone out with your spouse or a friend since Jan. 1?"

The results:

Zero to one time: 58 percent.
Twice: 12 percent.
Three times: 15 percent.
Monthly: 12 percent.
Weekly: 2 percent.

Let's stipulate that this is a self-selected sample, not scientific. But it suggests some parents could use some suggestions for taking more breaks. So here are some suggestions.

1.) Take a little time off, but do it regularly, even if it's alone time. Take a walk. Go to a movie. Tend the garden. Visit a friend. It helps not only to get away from the many demands on your time. The process of looking forward to these short breaks is a positive thing.

2.) Date night. If hiring a babysitter is a problem, make it date day. My wife and I once spent part of a weekday at an art museum while the kids were in school. It took some planning (like scheduling a vacation day), but it was a fun, memorable time to think about art and Isabella Stewart Gardner's life. You could also try the lunch date variation on a school day.

3.) Be a joiner, part 1. If you feel that you need to talk to other parents about what you're going through raising a child with autism, you could consider joining a parent support group. Check with other moms and dads at your child's school, or through your autism services providers' offices.

4.) Be a joiner, part 2. If you want to make sure your time away from home is really time away from home, consider joining a club or organization that does something interesting to you. It could be a book group, or adult soccer team, or religious organization or volunteering. Participating, actively engaging in an enjoyable activity can be restorative and relaxing.

5.) Fill in the blank. It's up to you how you want to spend your free time; just put in the effort to free up that time.

Do you have other suggestions for freeing up time? Submit comments below or e-mail me at michaelsgoldberg AT yahoo.com.


Research citations:

From the May 2007 issue of Pediatrics: "Psychological Functioning and Coping Among Mothers of Children with Autism: A Population-Based Study," by Guillermo Montes and Jill S. Halterman, who are affiliated with the Children's Institute of Rochester, N.Y., and the Department of Pediatrics, University of Rochester School of Medicine and Dentistry, respectively. See abstract here.

From February 2007 issue of Pediatrics: "The Relationship Between Autism and Parenting Stress" by Laura A. Schieve, Stephen J. Blumberg, Catherine Rice, Susanna N. Visser, Coleen Boyle, all researchers at units of the Centers for Disease Control and Prevention. See abstract here.

Monday, May 07, 2007

17 States Require Some Insurance Coverage for Autism Services, Recent Survey Finds

Seventeen states afford some level of coverage for autism-related services, according to a report from the Connecticut Office of Legislative Research. The report, dated December 27, 2006, came in response to inquiries from state lawmakers wondering "if health insurance policies cover physical, speech and occupational therapy for autistic children and if not, whether the legislature could require coverage."

With a rise in the prevalence of autism spectrum disorders among children in the country, a number of states have been considering proposals to require health insurers to cover autism-related services. Last month, Wisconsin Gov. James Doyle came out in support of such coverage (see more here) and the Pennsylvania legislature took up consideration of a bill that would provide coverage (read more here). New Mexico also has taken up the issue.

The Connecticut report notes that health insurance policies in the state must cover "certain mental illnesses" and that the law appears to cover the diagnosis and treatment of autism -- though it's unclear whether such treatment includes physical, speech and occupational therapy. State lawmakers "could refine the state insurance laws to specify certain coverage requirements for autism," the report says.

Interestingly, the report also notes that the state Insurance Department staff "declined to comment on the extent of coverage required for autism due to their lack of medical expertise." The agency did say that policies must cover "medically necessary early intervention services" from birth to age 3, with expense caps of $3,200 per child per year, or $9,600 per child per year until age 3.

You can find a copy of the report online here, via the Connecticut General Assembly website. The state Office of Legislative Research has an online section of the website here.

Aside from Connecticut, the report finds that six other states -- Georgia, Indiana, Kentucky, Maryland, New York and Tennessee -- have laws that specifically address insurance coverage for autism-related services.

Ten other states -- California, Illinois, Iowa, Kansas, Louisiana, Maine, Montana, New Hampshire, New Jersey and Virginia -- require coverage for autism-related services as part of laws that say insurers must cover autism as they do other mental illnesses.

Friday, May 04, 2007

Question for Parents of Autistic Kids: How Often Do You Take a Break?

Parents of children with an autism spectrum disorder know it's important to take a break from the stress of caring for their kids. By "break" I do not mean respite care, such as hiring someone to engage your children in constructive play, extra therapy sessions or the like. I mean a break from everything, to go out with your spouse or friends or even by yourself with the goal of having fun, taking time off to do nothing parenting-related. How often do you get to do that? How often have you gone out with your spouse, significant other, or a friend, just for pleasure, since January 1? Once? Twice? Monthly? Weekly?

Please answer the question below. (E-mail subscribers can participate in the question by clicking here.) I plan to use the results in a future article on Autism Bulletin. And feel encouraged to post a comment on this subject, or write to me at michaelsgoldberg AT yahoo DOT com.


How many times have you gone out with your spouse or a friend for pleasure since Jan. 1?











































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Wednesday, May 02, 2007

Experts Unveil New Framework for Identifying Developmental Delays, Possible Signs of Autism, In Very Young Children

A working group of experts in autism spectrum disorders and child development has published a simple framework designed to help parents and pediatricians identify very young children who may present with developmental delays that indicate autism or other developmental disabilities and benefit from early intervention services.

The experts produced the four-point framework in a report for the Centers for Disease Control and the Interdisciplinary Council on Developmental and Learning Disorders (ICDL), a non-profit organization founded by the creators of the DIR/Floortime model for behavioral intervention. A statement from the report says the framework "is based on current understanding of health developmental patterns and is designed to detect all possible deviations from those patterns. It uses risk indicators designed to detect a lack of mastery of age-expected emotional, social and cognitive milestones during a child's first two years of life."

The four points ask whether a child can do the following:

* Be calm and focus on sights and sounds by 2 months of age

* Initiate and sustain warm, joyful interactions with caregivers by 4 months of age

* Exchange emotional and social gestures (using different sounds), reaching, exchanging, back-and-forth smiling, looking, and searching by 8 to 9 months of age

* Engage in shared social problem-solving and playing, including taking a caregiver's hand to find a toy or favorite food; playing with a toy and a caregiver together with lots of back-and-forth exchanges of sounds; and social gestures such as smiles, looks, and pointing by 12 to 16 months of age.


This new framework "casts a wider net than current common practice in an effort to identify all children at risk of developmental disabilities," according to a statement put out by CDC and ICDL. You can find the text of the statement, in a PDF file issued April 23, by going to this website. A 10-page report on the frameworks, dated December 2006, is available here. The proponents said in the press release that they were announcing the new framework in April to coincide with autism awareness month. Both are hosted by ICDL, the non-profit organization that presents the DIR/Floortime model of behavior intervention and relationship building established by Stanley Greenspan and Serena Wieder.



The group that developed this framework included Greenspan and others, among them: Jose Cordero, former director of the CDC's National Center on Birth Defects and Developmental Disabilities; T. Berry Brazelton, founder of the Child Development Unit at Children's Hospital Boston; and Margaret L. Bauman of Massachusetts General Hospital.



The effort to develop this evaluation framework overlap with some other efforts by researchers at places like the M.I.N.D. Institute at the University of California at Davis, to look for ways to diagnose children with autism by their first birthday -- on the theory that the earlier intervention services can start, the better the potential outcomes for these kids later in their development. This research project was the subject of a "60 Minutes" segment earlier this year. Read more about that here.

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