Dan Marino's Forward Pass for Adults with Developmental Disabilities

The Dan Marino Foundation this week unveiled plans to create a vocational educational program for adults ages 18 to 28 with autism spectrum disorders, Asperger's syndrome, Down syndrome, cerebral palsy and other disabilities. The Palm Beach Post has a good explanation of the program, called the Dan Marino Foundation Vocational Campus, to be located in downtown Fort Lauderdale, Fla., and serve 60 students starting in the fall of 2013.

This is a program worth watching. The foundation, started by former NFL quarterback Dan Marino 20 years ago after learning his 2-year-old son had autism, has a record of building programs and raising money to help people with developmental disabilities. This new program aims to teach students skills, in fields such as culinary arts and auto mechanics, so they can get jobs and live more independent lives.

As many families dealing with autism and other disabilities can understand, such a program also addresses a fundamental question: what will our kids do after they finish school, after they turn 22? In Florida, only one in five people with developmental disabilities have a job, the Marino Foundation points out.

The Marino project is not alone, as other nonprofit organizations, educational institutions and social service agencies work to build or expand programs to include people with disabilities in the work force and society in general. The Easter Seals, based in Chicago, has long worked to train and place people, and now counts people with autism as a key constituency. A program called Think College, based at the University of Massachusetts at Boston, offers educational programs and training classes. This article in The Chicago Sun-Times reports on a career development program run by the Turning Point Autism Foundation of Naperville, Ill. The Jewish Vocational Service of Metrowest, in New Jersey, recently opened a career center for people with autism. There is also a Danish software company made famous by Harvard Business Review as its technical director, the father of a child with autism, applied some insights he learned as a parent to hire people with autism to do quality control work.

You may know of other programs, and I invite you to post a comment on this blog with more information.

It can be daunting to think of our kids' future when they grow up and wonder what it holds for them. Programs like these are not the answer for everyone, but the Marino Foundation's information flier on its new vocational center is worth reading. It says, in part:

There are over 341,000 students in Florida who have a disability

77 percent will graduate or age out [of school] without a standard diploma

79 percent will not qualify for further educational opportunities

70 percent do not believe they will ever have the means to live independently

Only 8 percent of companies in the U.S. report hiring people with disabilities

90 percent of individuals with autism are unemployed

But the most meaningful statistic of all is that there is a 100 percent chance the Dan Marino Foundation Vocational Campus will make a difference

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
    
    

Autism Society Urges Families to Voice Concerns to Obama's Transition Team

The Autism Society of America, a leading advocacy group for parents and families, is urging its members to post comments citing the need for autism support services and full funding for the Individuals with Disabilities Education Act on President-Elect Barack Obama's transition team website, Change.gov.

The Obama team has continued its use of web-based technologies honed during the election campaign, both to inform and engage voters and raise record amounts of money. During the transition between presidencies, Obama has used Change.gov to speak directly to voters through video and other means—and engage citizens on ideas that are important to them. (Here's a New York Times article discussing this feature.) With the floor open for discussion on a range of issues, the Autism Society says now is the time to join the online meeting to discuss healthcare policy, which is titled, Health Care — Of the People, By the People.

The Autism Society has posted a web page with suggestions for submitting comments. The substance of the Society's suggestions are below:

Start off with a brief explanation why you are concerned and want things to change.

I am the parent of a child with autism and I want my child to have happy and productive life just as any parent would want for their child.

Provide some facts such as:

Prevalence

• 1 in 150 U.S. children is diagnosed with autism. Boys are four times more likely than girls to have autism.
• 1.5 million Americans have an autism spectrum disorder

Diagnosis

• Less than a decade ago, the disease was diagnosed at age 3 or 4. Now it is routinely diagnosed at 2.
• Symptoms range from mild to severe. Many people with autism display rigid routines and repetitive behaviors.

Cost

• Lifetime cost of caring for a child with autism: $3.5 million to $5 million
• Annual U.S. cost: $90 billion

The explosion of autism spectrum disorders (ASD) and related disorders in the United States constitutes the largest health care crisis in our nation’s history. It has been estimated that 1 in 150 children will be diagnosed with ASD, with recent data suggesting that as many as 1 in 67 boys are now affected.

Autism is the fastest growing disability in the country, now affecting an estimated 1.5 million individuals - more prevalent among our children than pediatric cancer, diabetes, and AIDS combined. There are approximately 24,000 new cases of autism diagnosed each year. Every 20 minutes another child is diagnosed with autism in the United States.

The alarming increase in autism spectrum disorders must be considered a national health emergency that requires the allocation of significant resources, aggressive research toward effective treatments for those affected, and rigorous investigation into causation for the protection of future generations. Equally important is to ensure that individuals affected by autism receive help TODAY.

Offer solutions, such as:

Legislative Agenda

Please support Expanding the Promise to Individuals with Autism Act. This bill would provide adults the services they need to lead a productive and meaningful life. The Autism Society of America works to ensure that adults living with autism have access to appropriate employment, housing, and services. ASA chapters have been instrumental in developing job training programs and creating independent living or residential services opportunities for adults with autism. This act will allow these programs to grow and serve more adults nationwide.

Please support Full Funding of the Individuals with Disabilities Education Act. Federal funding is $10.5 billion short of full funding this year leaving thousands of children without services.

Autism is the most costly disability confronting our public education system. The federal government should provide local education agencies the resources they need to serve children with autism.

The Autism Society of America is experiencing an explosion of information and referral requests from teachers. Teachers are clamoring for additional training - and ASA has met their demands by hosting a training conference for teachers - but much more needs to be done.

Watching Obama's Stimulus Package and How States Receive Federal Aid

President-elect Barack Obama committed himself to helping state governments deal with economic problems and budget shortfalls in a meeting in Philadelphia on Dec. 2. Assuming the new Obama administration can win support after taking office in January and start implementing its plans, this is good news for many who care about services delivered at the state level.

While this issue clearly goes beyond services for people with autism spectrum disorders, it will be important for advocates to watch how state-level budget discussions progress. Most state governments—41 out of 50 as of this week, The New York Times reported— are forecasting budget deficits this year.

In Massachusetts, Gov. Deval Patrick told WBUR radio in Boston that Obama and governors shared a strong consensus that a new stimulus package will focus on "job creation, to build roads and bridges, restore rail systems, install green technology, refurbish public buildings." Patrick added that governors told Obama states need help with rising demand for services like Medicaid, food stamps and unemployment benefits, which are rising as state revenues fall.

Update: WBUR posted the audio clip of the interview with Deval Patrick at my request. Here it is:


Those points are clear: new federal money for roads, bridges, buildings, new environmentally-friendly fixtures and technologies. Help for people hurt by the recession.

What's not clear so far is how operating budgets are faring at the state level, and at the level of cities and towns, where our kids go to school, for example, or other important services get delivered. Those are the decision-making processes that bear close scrutiny, and likely, some advocacy.

If you have information about goings-on in your state, please feel encouraged to post a comment below this post.

Below is a video of Obama's remarks at the governor's conference on Dec. 2 in Philadelphia, via Yahoo video.

President-elect Obama and governors tackle the economy @ Yahoo! Video

Great Teachers of Kids with Autism Deserve More Than Gratitude

How do you say goodbye and thank you to a teacher who has made an important, positive, lasting impact on your child's life? On the lives of your whole family?

This is an important issue for families who have children with autism spectrum disorders because special education services are an essential component of enabling a person with autism to learn and develop skills—in the classroom, at home, and in the community—that will form the building blocks of a better life.

And parents I've met rightly focus on not just the person doing the teaching—let's stipulate you have to be a kind, patient person to want to be a teacher of kids with special needs—but also on the person's qualifications, training and experience. (Good supervision also makes for superior teachers, but that's a topic for another post.)

The point here is: When you find a great teacher, you know it. You not only experience your child learning new things, you get to see data that tracks such learning. You not only see a child who enjoys seeing the teacher, but you as a parent get to learn new things about how to support and enhance your child's development. You get to ask questions, make suggestions. If you read someplace that it takes a village to raise a child, it can feel like it takes a town to raise a child with autism; and the teacher is a leading citizen in that town. A great teacher is a gift, something you can't quantify in terms of value. You know you have a great teacher because you dread having to say goodbye.

So how do you say thanks, how do you show your gratitude to someone whose work has been a gift? Here are some thoughts below. You are encouraged to add your own.

1. Don't wait until the end of the school year (or teaching cycle) to say thank you.
Offer positive reinforcement early and often. Learn what kind of praise resonates most with a teacher. It could be a written note, a donation to charity in her honor, a letter of commendation to her school, her supervisor.

2. Be a good partner.
Because teaching kids with autism requires a commitment by parents to complement what is going on at school, listen to the teacher's good advice, work with her on behavior plans to develop them and carry them out. Demonstrate you are not only an expert on your child's needs, what motivates her to do well, but that you also are a good listener, interested to learn more from skilled educators.

3. Look for ways to support educational institutions for kids with autism, which are training more great teachers.
If your great teacher is affiliated with an educational institution or school district, there could be a way to volunteer to help them, or become a contributor.

4. Ask other parents for their thoughts.
Other parents you meet along the way to figuring out how to make a difference for your child with autism can help you answer many questions. How do they show their appreciation for great teachers?

Also see:

Autism Specialist Market Heating Up; How Do You Thank Your Autistic Child's Teachers?

Top Stories on Autism Bulletin in 2007

Here is a list of the top 10 stories on Autism Bulletin as measured by readers' interest:

1. Map of State Autism Insurance Laws

2. Texas Governor Signs Autism Insurance Bill

3. 17 States Require Some Insurance Coverage for Autism, Recent Survey Finds

4. Autism Schools Map Project

5. Colorado Passes Early Intervention Plan that Applies to Autism

6. New Florida Autism Charter School Opens in Tampa

7. MTV's "True Life" Features Teens with Autism

8. Texas Lawmakers Pass Bill to Cover Some Children's Autism Services

9. Wisconsin Governor Calls for Autism Coverage

10. Nick News Focuses on Autism


The top five "Labels" readers researched on Autism Bulletin in 2007:

1. ABA

2. Autism Services

3. Asperger's

4. Health Insurance

5. Legislation

Source: Google Analytics

New on Autism Bulletin's Sidebar: Special Education and Disability News from PatriciaEBauer.com

Readers new to Autism Bulletin should check out what I call the "sidebar" which is the column on the right side of this website that has lists and links to other resources. I've added a new one today.

PatriciaEBauer.com is the blog and website providing news and commentary on disability issues authored by Patricia E. Bauer, a veteran journalist and editor. She notes on her website bio that she and her husband helped to establish the Pathway Program at UCLA, a post-secondary program for young adults with intellectual disabilities. They are the parents of two young adults, one of whom has Down syndrome and is a survivor of leukemia.

Note for e-mail subscribers: other resources in the sidebar include autism news via GoogleNews, links to reports and books I have found useful, recent court decisions involving special education law, other resources and some how-to articles such as how to plan a community outing.

Questions and Answers About the Florida Autism Center of Excellence in Tampa

The Florida Autism Center of Excellence (FACE), which opened August 20 in Tampa, Florida, to serve children with autism spectrum disorders, represents an interesting model for a new school. There's been a great deal of interest among Autism Bulletin readers in how the school is set up to help kids and their parents, and below I am publishing the transcript of an e-mail question-and-answer session with representatives of the school about the FACE program.

First, a bit of background. About one year ago, FACE received seed money ($700,000) from the state of Florida to cover starting costs. Students at the school are eligible for partial tuition grants from a state government "school choice" program for children with disabilities. The school is pursuing a program based on the principles of Applied Behavior Analysis (ABA), which means staff seek to manage the behaviors of children to help them learn, to encourage positive behaviors that lead to growth and development and to discourage behaviors that are obstacles to learning.

In addition, the for-profit Educational Services of America, based in Nashville, is responsible for managing the nonprofit FACE school. With such a model, with a rising demand nationally for autism services and educational programs, it's no wonder that there has been a great deal of interest among Autism Bulletin readers in the school, and the specifics of how it's set up. What follows below is the full text of questions I had, plus those collected from readers, and the answers which the school administration sent on November 29 through Lovell Communications, Educational Services of America's public relations agency.

1. What kind of training do teachers receive?

Our teachers receive specific, extensive training that begins before they enter the classroom and continues throughout the school year. Topics include Applied Behavior Analysis and specific methodologies for working with students with autism, such as discrete trial, structured teaching, social skill training and other tools to develop individual education and behavior support plans.

Our school calendar requires an additional 150 hours of formal training, which is supplemented by ongoing coaching and support from the clinical program director and from teachers who mentor their colleagues. Teachers are trained to conduct individual assessments, write lesson plans and collect and analyze data so they can make objective determinations about whether a student is advancing academically, behaviorally and socially. In addition, teachers are required to obtain an Autism Endorsement from an accredited university.

2. What kind of training do one-on-one aides receive?

We staff classrooms to provide the greatest amount of support to promote students’ independence, enhance generalization and encourage relationships with their peers and, therefore, we do not provide one-on-one aides. However, all aides receive the same extensive, specific training the teachers receive.

3. What direct supervision do teachers and aides receive -- how often, how much time per week and from whom?

Teachers and aides receive a high degree of support and supervision. Several teachers serve as mentors to their colleagues and the mentors hold weekly supervision meetings with classroom teachers to provide ongoing training, support and guidance. The clinical program director meets with each mentor teacher weekly. And the clinical director/behavior specialist and school director review each teacher’s weekly lesson plan. Assistants receive formal supervision from the classroom teachers once a week and on-the-job coaching, support and training all day every day.

4. What kind of certification of education and training do you require of staff?

Our teachers are required to meet all state standards plus the standards of the Florida Autism Center of Excellence. Our school calendar requires an additional 150 hours of formal training, which is supplemented by ongoing coaching and support every day. In addition, teachers are required to obtain an Autism Endorsement from an accredited university.

5. How many staff members have advanced training in applied behavior analysis (ABA)?

Educational Services of America, the company FACE hired to manage the school, has seven qualified board certified behavior analysts, including two who provide support and supervision to FACE and conduct on-site training for FACE teachers. The FACE clinical program director earned her master's degree in Applied Behavior Analysis from the University of South Florida and sat for the certification exam in November. The principles of ABA are the very foundation of what we do. For example, our lesson plans include ABA components such as the instruction (discriminative stimulus), the prompt level, the correction and reinforcement plan.

6. Who is responsible for individual behavior plans for students? If an aide has a problem, where does she go for help?

The teacher, the mentor teacher and the clinical program director work collaboratively to develop students’ individual positive behavior intervention plans. If an aide has a problem, he or she goes first to the classroom teacher, then to the mentor teacher, then to the program director.

7. How often does your staff visit with students at home to generalize lessons from school, and work on home-based skills?

Our mission is to educate students in a school environment. Therefore, our staff does not go to students’ homes – rather, we communicate with every parent every day and we invite parents to schedule visits to FACE. In addition, we will soon offer parents additional support they can use at home. Our plan called for us to open FACE in Fall 2007 and offer parent and family initiatives such as training, support groups and a parent-teacher association in Spring 2008 – and we’re on track to do that.

8. What kind of training and education do supervisors have?

One supervisor has a bachelor’s degree in special education, a master’s degree in ABA and sat for the certification exam in November. Another has a bachelor’s degree in business management, a master’s in education and is working toward a doctoral degree in educational leadership. Our lead teachers each have bachelor’s degrees in psychology and seven years of experience working with children with autism. One of our lead teachers has a certification in Exceptional Student Education for students in grades K-12. The executive director of FACE has a bachelor’s degree in social science, a master’s in mental health counseling and is completing a doctoral program in adolescent counseling. He is a board-certified professional counselor and a licensed mental health counselor whose specialty is children and adolescents.

9. How many board certified behavior analysts does FACE employ on site?

ESA has three board-certified behavior analysts, including two who provide direct, ongoing support to FACE and are frequently on campus. The clinical program director, whose office is on campus, has a master’s degree in ABA and sat for the certification exam this month.

10. What is the student-teacher ratio?

We individualize our curriculum and behavior intervention plans for each student, so our student-teacher ratio is based on students’ needs. There is one teacher and one aide for every eight children at the FACE Dale Mabry campus, whose students require more intensive interventions. There is one teacher and one aide for every 15 students at the FACE Chelsea campus, whose students require less intensive interventions.

11. How many students have a one-on-one aide, compared to the total enrollment?

We staff classrooms to provide the greatest amount of support to promote independence, enhance generalization and encourage relationships with peers and, therefore, we do not have one-on-one aides.

12. The autism spectrum can present as a broad array of needs, from severe communications challenges, to highly verbal children who have a diagnosis of Asperger's Syndrome. Do you serve them all? How?

Our mission is to provide a continuum of education and behavioral services to students anywhere on the spectrum. We do this by providing individualized curriculum and behavior intervention plans to meet the specific needs of each student. Students at our Dale Mabry campus require more intensive interventions; students at our Chelsea campus require less intensive interventions. Class sizes are small and students are grouped by according to their age and then by their level of ability. Our small class size, low student-teacher ratio, highly individualized instruction and two campuses enable us to serve students no matter where they are on the spectrum.

13. What kind of parent training do you offer? What do you do to help parents learn about ABA?

We will begin offering parents structured training and support soon. Since FACE opened in the Fall of 2007, we have worked closely with our parents and shared our methodologies and philosophies with them. Our plan called for us to open FACE in Fall 2007 and offer parent and family initiatives such as training, and network and support groups in Spring 2008 – and we’re on track to do that. We can help parents learn about many aspects of ABA, such as positive behavior management, that will help parents and students in their daily lives at home.

14. What other services are available for families from the school?

FACE has partnered with the Boys and Girls Club of Tampa, in part due to a federal grant to establish after school programs for children with special needs. The goal is to provide a comprehensive after school program integrating children at all levels of functioning with a comprehensive academic, social and physical program model. As part of the program, FACE students are teamed with typically developing students from other schools who serve as mentors one day a week. This provides FACE students an opportunity to interact and develop friendships with students who attend other schools.

15. Do you offer any social worker support from the school?

Through our partnership with the Hillsborough County School District, every student and family has access to social work support.

16. What do you say to those who are skeptical that a for-profit parent company can run an effective non-profit organization like FACE? How do you balance the need to maximize revenues, minimize costs and still provide a quality program?

Our mission is to help students with special needs develop academic, behavioral and social skills that will enable them to lead more independent lives. Being a for-profit organization allows us to do this effectively, efficiently and with a high level of quality. Organizations, whether they are non-profit or for-profit, have many of the same fiscal realities – they have income and they have expenses. But there are some important differences. Because we do not have to raise money through charitable donations, we have the resources to focus strictly on helping children. We also feel tremendous accountability. We remain in business because our programs are successful and our families are happy with the results their children achieve.

Editor's Note

As always, you are welcome to leave comments about this exchange with the FACE school. No doubt the FACE administration will see them. In addition, I want to publicly thank the school's administrators for participating in this Q&A.

For more background, also see from Autism Bulletin's archives:

New Florida Autism Charter School Opens in Tampa

Florida Awards $700,000 Grant to Start Tampa Autism Center

Autism Schools Map Project

Bush Vetoes Domestic Spending Bill That Includes Autism Research, Education Funds

President Bush today vetoed a bill that autism advocates say would have increased funding for autism research, data collection on autism diagnosis studies, and provided more awareness and training for professionals working with autistic students. Some autism advocates are calling on Congress to override the president's veto.

The money involved—$1 million at the National Institutes of Health for research, $16.5 million at the Centers for Disease Control for the population studies, and another $37 million for awareness programs—is a relative pittance when compared with the billions of dollars in disagreements you're about to read in the quotes from government leaders that follow. It demonstrates how difficult it can be to get federal funds appropriated for a cause that just a year ago enjoyed wide bipartisan support, when Bush signed the Combating Autism Act into law.

These autism-related items are part of a much larger spending bill that also pertains to education, health and anti-poverty programs.

Partisan Bickering—and the Iraq War

Bush issued a statement saying the domestic spending proposal from Congress, called the Labor, Health and Human Services and Education Conference Report, costs too much and contains too many "earmarks," spending provisions for projects in local Congressional districts. The president's statement said: "This year, the Congress plans to overspend my budget by $22 billion, of which $10 billion is for increases in this bill. Health care, education, job training, and other goals can be achieved without this excessive spending if the Congress sets priorities."

Leaders of the appropriations committees in the House and Senate, both Democrats, sought to point out the relative low cost of the programs designed to make Americans' lives better, compared with the mounting cost of the Iraq war and Bush's tax policies.

Rep. David Obey, D-Wisconsin, chairman of the House budget panel, issued this statement:

“The same President who is asking us to spend another $200 billion on the misguided war in Iraq and is insisting on providing $60 billion in tax cuts next year to folks who make over a million bucks a year, is now pretending to protect the deficit by refusing to provide a $6 billion increase to crucial domestic investments in education, healthcare, medical research and worker protections that will make this country stronger."

Senator Robert Byrd, D-W. Virginia, chairman of the Senate appropriations committee, issued a similar statement, urging the White House to return to negotiating with Congress on the budget.

Autism Society Calls for Veto Override

Since the Bush White House has not developed a reputation for negotiating with Congress, it is not surprising that advocates at the Autism Society of America are urging its membership to contact their representatives in Congress to override the president's veto.

Here's an excerpt from the argument the society is encouraging autism advocates make to their members of Congress urging them to override the president's veto:

This important legislation would provide significant increases for autism research, public awareness, early intervention and education. Specifically, the measure calls for:

* A 3.1 percent increase in research at the National Institutes of Health, a portion of which can be used to expand, intensify and coordinate research into the causes, diagnosis, early detection, prevention, services, supports, intervention and treatment of autism spectrum disorders. This includes $1 million to reinstitute the Inter-Agency Autism Coordinating Committee.

* $16.5 million for the CDC's Disabilities Surveillance and Research Program, which supports data collection, analysis and reporting, so that we can better understand the scope of the autism epidemic.

* $37 million to increase awareness, reduce barriers to screening and diagnosis, promote evidence-based interventions for individuals with autism and train professionals to utilize valid and reliable screening tools to diagnose autism and provide evidence-based interventions for children with autism and other developmental disabilities.

These important increases will ensure that research into improved treatments and interventions can be explored, and that children with autism are diagnosed earlier, can access early intervention services, and are able to receive a quality education.

President Bush's veto seriously endangers our ability to diagnose, treat and serve individuals with autism and their families.

"Combating Autism Act" Funding Caught in Legislative Wrangling; Bush Veto of Research, Awareness Dollars Possible

Millions of dollars in federal funding for scientific research into autism spectrum disorders and for public awareness campaigns is caught up in an ongoing budget battle between Congress and President George W. Bush, who has threatened to veto the spending bill in which these autism provisions are included.

That's the news in an important legislative update provided by the Autism Society of America, a major autism advocacy group based near Washington D.C. You can read a copy of the update at the society's website by clicking here.

The big picture here is that President Bush has decided, in the last part of his second term, to hold the line on domestic spending programs. A November 6 press release from Rep. David Obey, the Wisconsin Democrat who chairs the House Appropriations Committee, outlines how the Bush Administration and the Democrats in the House view a series of labor, health and education issues. Not surprisingly, the Iraq war plays into the politics of the situation. This is the way the introduction reads on Obey's press release:

WASHINGTON - Even as the President is asking for nearly $200 billion to cover the $10 billion a month we are spending in Iraq (paid for with borrowed money), he is trying to masquerade as fiscally responsible by manufacturing a fight over what we spend in roughly 2 months in Iraq ($22 billion) in investments that will make this a stronger and better country.
At the center of that fight is funding for the Departments of Labor, Health and Education. The conference report considered in the House today provides $150.7 billion, $6.2 billion (4.3%) above 2007 and $9.8 billion above the President’s request (roughly the cost of 1 month in Iraq) for the Departments of Labor, Health and Human Services and Education.
What would that $9.8 billion achieve? Here are some specific examples.

Obey's statement goes on to outline the differences between the White House and the majority in Congress on issues including health care, job training, education, poverty programs and medical research. Obey notes that the House wants to spend more money on all of these programs and Bush wants to cut them, including special education funding under the Individuals with Disabilities Education Act (IDEA).

It is the medical research section that the Autism Society says advocates for people with autism should watch closely. The bill for Labor, Health and Human Services spending "provides $37 million for autism public awareness and early intervention—a $17 million increase over last year, as mandated by the Combating Autism Act of 2006," the Autism Society notes, and adds:

The bill also appropriates $16.5 million for the Centers for Disease Control and Prevention to use toward surveillance and research and $1 million to reinstate the Inter-Agency Autism Coordinating Committee, which would develop a strategic plan for autism research at the National Institutes of Health.

President Bush has vowed to veto the bill because it asks for $9.8 billion more than his budget proposal. Unfortunately, there is not a veto-proof majority in either chamber, so additional negotiations will be needed.

This would be one of those times when it pays to be an engaged citizen. It would be worthwhile to educate yourself about where your House member and Senator stand on this funding bill. Because of Bush's staunch veto threat, it would be especially interesting to go through this effort if you have Republican representation in Congress, because those are the votes in the House and Senate which would be tougher to get if a veto override vote becomes necessary. Let's hope it doesn't.

Also see:

* Bush Signs Combating Autism Act

* More Autism Bulletin stories relating to Congress

An Indefinite Decision in Special Education Case at U.S. Supreme Court

The United States Supreme Court today issued a split decision in the case of a New York City family who sought reimbursement for their disabled son's private school tuition after rejecting a public school placement.

The 4-4 tie vote means that a lower court ruling in favor of the family stands, and that New York City will have to reimburse the family for tuition at the Stephen Gaynor School for children with learning differences in Manhattan. Only eight justices heard the case; Justice Anthony Kennedy did not take part in the case, but the court did not explain why he was excluded.

The case, Board of Education of the City School District of the City of New York v. Tom F., on behalf of Gilbert F., raises an important question in the ongoing tension between school districts and families with disabled children who disagree on how best to serve the student's needs under the law which requires every student receive a free and appropriate public education.

The question in this case: if the family and school district disagree on whether a school district can meet a student's needs, does the family have to try out the school district's plan anyway? And if the family chooses not to do so, and enrolls the student in a private school, does that action mean the family gives up its legal right to seek reimbursement for the private school tuition?

New York City's lawyer's argued yes, the student has to try out the public school program. The Freston family's lawyers argued no.

This case has received a lot of attention in the media in part because the "Tom F." in the case is a well-known businessman, former Viacom CEO Tom Freston; most media accounts have noted how Freston's wealth contrasts with the overburdened city school system.

Because the court issued only a statement that said, "The judgment is affirmed by an equally divided court," we don't know which justices sided on the Freston's side, or the city's side. Even the special education law experts at Wrightslaw.com noted in this summary of the Freston case and attorneys' oral arguments before the Supreme Court on October 1 that it appeared the court was divided on the questions in the case.

Autism Speaks was a player in the case filing a legal brief at the Supreme Court in support of Gilbert F. and his family (Gilbert F.'s disability was not identified). Every parent of a child with an autism spectrum disorder who has to go through the process of working out an Individualized Education Prorgram (IEP) knows there are options school districts and parents discuss about how to educate any given student—and little time to waste in trying out a program that might cause an autistic child to regress. An Autism Speaks statement added:

"Today the court affirmed the danger of making students try out an inappropriate school district program. Students who need early intervention do not have time to waste," said Gary Mayerson, an Autism Speaks board member and founder of law firm Mayerson & Associates. "School districts need to fulfill their statutory responsibility to create an appropriate IEP for every child with a disability or to pay for that student to attend an appropriate private school."

Autism Speaks filed an amicus brief in the case, focusing on the critical nature of early intervention for children with autism. The brief explained why parents of children with autism should not be forced to "try out" demonstrably inappropriate and ineffective IEP programs during what may well be a relatively narrow window of opportunity.

Tom Freston issued a statement today, quoted in this Associated Press article:

Freston said in a news release that he believed the Supreme Court had affirmed that "children with learning challenges have a right, without jumping through hoops, to attend schools capable of providing them with an education that truly accommodates their individual requirements."

School districts around the nation were following this case, The New York Times notes. The lead New York City Schools lawyer told the Times for this blog post that the Supreme Court's left the main questions in the case unanswered, and he hoped the court would find another case to rule on the issue in the near future.

For his part, Freston has donated reimbursement funds to the city's public schools, to help with remedial reading programs, for example.

Autism Schools Map Project

There is a growing number of schools across the United States that provide educational services to children with autism spectrum disorders. Some are based at research universities or long-standing nonprofit organizations that have served people with autism for years before the recent sharp rise in diagnoses. Others reflect new efforts by state governments to meet the rising demand for autism services.

With these trends in mind, I've started the Autism Schools Map Project, for which I'm asking for your help. I have created the map below, with a small number of points representing schools around the U.S. that are designed to educate students with autism. Check it out below (if you are an e-mail subscriber click here to see it). If you know of other autism schools or programs, let me know by e-mailing me at michaelsgoldberg AT yahoo DOT com. Please include the school's name, address and website. I will periodically update the map and let readers know it has new information.

Why do this? Finding an effective educational program for a child with autism is among the most important actions parents can take to help their kids progress. For many kids with autism spectrum disorders, a quality educational program is the best prescription for helping them grow as people and can make a positive difference in their quality of life. While there are still not enough options for students with autism, the menu is growing. My goal in making this map is to provide a starting point for parents and other caregivers seeking information about autism education services. In the future, I hope to create an opportunity for families to provide each other with assessments about the quality of the programs listed.

New Florida Autism Charter School Opens in Tampa

The Florida Autism Center of Excellence (FACE), a school for kids with autism spectrum disorders started with a $700,000 state grant, opened the doors to its Tampa campus on August 20. The program set to serve students ranging in age from 3 to 22 will be a school parents and educators around the nation will want to watch for a few reasons.

First is the state of Florida's involvement in opening this school at a time when there's growing demand around the nation for autism services. The state awarded the grant to cover start-up costs for the school to serve the Tampa area.

Second: Tuition is at least partly covered by state scholarships in a program called the McKay Scholarship Program for Students with Disabilities, according to FACE. This is a "school choice" program that allows parents of children with disabilities to find a public or sanctioned private school that meets their student's needs. FACE is a program that's eligible for these funds.

And third: autism services represent a real business opportunity for entrepreneurs. Running the non-profit Florida school is Educational Services of America, a private for-profit operator of special education schools based in Nashville. Mark Claypool, the president and CEO, told the Nashville Business Journal last month that his company is expected to increase its revenues by 20 percent, to $90 million per year, by targeting two areas of opportunity: the rising high school dropout rate and "the big volume of students diagnosed with autism." See the article here. Educational Services of America runs close to 140 programs in 17 states.

These building blocks for FACE—state action to start a school, tuition aid to help make the program available, plus a private corporation putting its management reputation on the line—make the school very interesting for families of kids with autism around the nation to watch and wonder how it works out. Could it be a model for other autism charter schools in other states? We'll have to see.

As for the school itself, educators plan to run it according to the principals of Applied Behavior Analysis (ABA), according to a spokeswoman for the Florida Autism Center. About the school's staff, she said at least one staff member has master's degree training in ABA, and added:

• All staff, both teachers and assistants, have attended extensive training on ABA principles, learning best practices, functional behavior assessment, data collection and teaching methodologies;
• FACE teachers will also be taking several college level courses in the area of autism to be eligible for a special credential in autism to be added to their teaching certificate; and
• Several of the teachers at FACE are applying to the University of South Florida graduate program in ABA.

The school's website also mentions discrete trial training, pivotal response training, functional behavior assessments and positive behavior intervention plans as pieces of its ABA approach.

It's not clear as of this writing how many students have enrolled at the Tampa school; the school says it has a 140-acre campus, which includes a horse stable and boat house with canoes, in addition to other classroom and gym facilities.

Two other notes:

1. Do you have questions for the managers of the Florida Autism Center of Excellence, about how they started, how they plan to run things, how they train staff? Please post a comment at the end of this article, or write to me at michaelsgoldberg AT yahoo DOT com. I will collect them and see if we can get more information about this interesting program.

2. The last time I wrote about Educational Services of America (see Florida Awards $700,000 Grant to Start Tampa Autism Center), I raised questions about the role of a for-profit company in the special education business, which summed up asked: can managers looking to build revenues and maximize profits also deliver quality human services?

An executive from the company, John McLaughlin, wrote a thoughtful response which I am reposting here:

Our mission is to provide excellent education services for students with special needs and at-risk students in a structured and encouraging environment. The best testimony for Michael’s question on the mesh between for-profit and public service can be found in the thousands of families and public school districts that place their students in our schools and programs everyday. We are committed to help students develop academic and interpersonal skills that will lead them toward more independent lives. Having spent the first two decades of my career in the non-profit and academic worlds, I find little difference in the fiscal realities of for-profit and non-profit operations – students come first. ESA is mission-driven to be the best provider of services to children and young adults with autism.

Links to National Public Radio Stories on Autism

I've updated a story from earlier in the week about National Public Radio's coverage of autism education efforts in Massachusetts and a health insurance with Lisa Rollins of South Carolina. Find the expanded version of the story, including links to audio at NPR.org, by clicking here.

Autistic Kids Score Better on Alternative IQ Test

Autistic children typically score poorly on traditional IQ tests which are based on verbal responses to a stranger's questions. But what if the children took a different test, one that allowed them, by themselves, to analyze geometric shapes to identify patterns?

As Sharon Begley of Newsweek recounts in the August 20 issue, researchers found that the second method showed that autistic children performed, on average, much better. Read the article, "The Puzzle of Hidden Ability," here.

The article picks up on a study published in the August 2007 journal Psychological Science, "The Level and Nature of Autistic Intelligence," by autism researchers in Montreal and the University of Wisconsin-Madison. See abstract for the study here. One of the researchers, Michelle Dawson of the Riviere-des-Prairies Hospital in Montreal, tells Newsweek that the traditional IQ test known as Wechsler that calls for talking to a stranger is unfair, comparing it to "giving a blind person an intelligence test that requires him to process visual information."

The different test, called Raven's Progressive Matrices test, yielded different results. Begley writes:

For the study, children took two IQ tests. In the more widely used Wechsler, they tried to arrange and complete pictures, do simple arithmetic, demonstrate vocabulary comprehension and answer questions such as what to do if you find a wallet on the street—almost all in response to a stranger's questions. In the Raven's Progressive Matrices test, they got brief instructions, then went off on their own to analyze three-by-three arrays of geometric designs, with one missing, and choose (from six or eight possibilities) the design that belonged in the empty place. The disparity in scores was striking. One autistic child's Wechsler result meant he was mentally retarded (an IQ below 70); his Raven's put him in the 94th percentile. Overall, the autistics (all had full-blown autism, not Asperger's) scored around the 30th percentile on the Wechsler, which corresponds to "low average" IQ. But they averaged in the 56th percentile on the Raven's. Not a single autistic child scored in the "high intelligence" range on the Wechsler; on the Raven's, one third did. Healthy [typically developing] children showed no such disparity.

The article points out that the results of these tests often have an influence on what kind of expectations parents and educators place on a child and can have lifelong implications. And while the Wechsler test is widely used, the Raven's test could be a truer measure of intelligence, one that enables evaluators and parents alike to discover an intellectual abilities they weren't aware of previously.

Sidenote comment: Begley is an award-winning reporter, whose work I have read for a long time in the Wall Street Journal before she joined Newsweek. She's consistently terrific. But in this story, she allows a quote from an unnamed person who basically disparages parents of disabled kids everywhere -- and parents of autistic kids in particular -- as willing to trade a severe diagnosis for better special education services. Here's the passage:

If many autistics are more intelligent than an IQ test shows, why haven't their parents noticed? Partly because many parents welcome a low score, which brings their child more special services from schools and public agencies, says one scientist who has an autistic son (and who fears that being named would antagonize the close-knit autism community).

I've read this canard before, but never with solid evidence to back it up. I'm disappointed that such a distinguished writer would stick this unfounded comment in there from a person who won't stand up and say who he is, and on what he bases this opinion. A scientist no less. Readers deserve better.

Autism Stories Scheduled for National Public Radio Aug. 15 and 16

National Public Radio is scheduled to broadcast two pieces on autism on its Morning Edition program on August 15 and 16. Leaders of an autism advocacy group in South Carolina, who were among those interviewed, said we should listen for a segment focusing on Massachusetts schools on August 15, and a second piece the following day that takes a look at the issue of insurance for autism services.

South Carolina was the location for a major victory for advocates of autism services and insurance coverage earlier this year.

Assuming the pieces air as scheduled, they will be available for listening on the web. If you don't want to navigate NPR's website to find the clips, you can look back here for links to the segments.

UPDATE: Find the story focusing on Massachusetts schools' struggling to deal with a rising population of autistic children, aired Aug. 15, at NPR by clicking here. Reporter Larry Abramson spends time with public school teachers going through an ABA training session at the private May Institute, a school for children with autism. He also talks to educators, parents and kids.

While the story doesn't use the term applied behavior analysis explicitly, it describes ABA in concept. Glen Dunlap, the lecturer leading a teacher training session explains "teachers need to take a scientific approach to the problem" of getting autistic kids to learn. Teachers "must team up with their colleagues and take copious notes on the child's behavior. When does he act out? What seems to cause the most disturbing behavior? After months of work, the child's teachers succeeded in reining in his behavior."

"It takes a lot of work, but many public schools are managing to work with autistic children in mainstream classrooms, because they have to," Abramson reports.

UPDATE NO. 2: Find the link to South Carolina advocate Lisa Rollins' interview with NPR's John Ydstie by clicking here. In a key excerpt, Rollins describes the arguments she and other advocates made in favor of covering autism services like ABA for young children:

Rollins says the parents who backed the bill argued that autism is similar to a stroke or to Alzheimer's disease, neurological conditions that are covered by insurance.

"We also pointed out to legislators that it was the economically smart thing to do, because these early interventions can make the difference between a child going to a residential care-type of institution, nursing home facility, for the rest of their lives or being able to be a typical kid and be therefore a contributing member of society."

Bonus link: On its web page, NPR linked to Autism Bulletin's map of state insurance laws.


Also see:

South Carolina Legislature Overrides Veto to Pass Autism Insurance Law

Parents' Lawyers Consider Action Against New York State Special Education Review Officer

A group of lawyers who represent parents and families in special education matters is considering taking legal action against Paul F. Kelly, the New York State review officer for special education cases, The Wall Street Journal reported July 24.

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.

Golden reports:

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.

Also see:

* 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

Note to E-Mail Subscribers

A note to e-mail subscribers of Autism Bulletin:

The e-mail feed did not appear to work for stories posted on June 27. You can find them here:

Pennsylvania Governor Urges Passage of Autism Insurance Bill

A Tale from Scranton, Pa.: Classroom Teachers Need More Support If Inclusion Programs Are to Work

Advocates for Disabled Kids Take Issue with Journal Story

An Autism Bulletin reader pointed out to me today that a group of advocacy organizations for disabled children took issue with a story in The Wall Street Journal on June 25, "Mainstreaming Trend Tests Classroom Goals."

The Journal piece highlights the challenges that public school teachers are facing in helping disabled kids in their classrooms due to a lack of training and support. The advocacy groups interpreted the article as a slap against the idea of inclusion programs, because, it said, it gave voice to teachers' complaints that educating disabled children was difficult and driving some of them from the profession.

In response, the advocacy groups statement cites a litany of research sources that support the idea that inclusion, when done well, not only benefits disabled kids with a higher quality education than they would receive in separate classrooms for special education; the practice also benefits the educators and school community.

Find the statement here, on the website of the American Association for People With Disabilities. The groups helpfully post a copy of the Journal article, presumably with permission, on their website here.

Other organizations represented by the statement are: the National Down Syndrome Society, the National Down Syndrome Congress, the National Center for Learning Disabilities, and international advocacy group TASH. A key passage about the value of inclusion programs reads:

Students labeled as having severe and multiple disabilities may appear to have such challenging impairments, and their needs appear to be either so basic (e.g. simple communication skills; appropriate manipulation skills; learning to sit) or so complex (e.g. requiring nursing intervention, G-Tubes, etc) that teaching these students in highly academic, typical classrooms seems improbable, and at the least, impractical. YET – research and best practice shows that this type of student learns more with the almost constant stimulation and numerous and spontaneous opportunities to interact with peers. Special educators, no matter how highly motivated or skilled, cannot provide the necessary ongoing stimulation in self-contained classrooms.

One factor not mentioned in the statement, which I would have expected: what are the benefits which typically developing students may experience through exposure to and collaboration in class with disabled peers? I would expect researchers to have identified some.

I read the Journal article differently than these advocacy groups, which is not to say their interpretation lacks merit. I took away the message, backed by evidence the reporter cited, that teachers in Scranton, Pa., lacked the proper training and support to make their inclusion settings work for everyone. The article suggested that this was a sad truth facing teachers, disabled kids and their families around the nation. Read more about the story here.

If you have thoughts to add about this important issue, please do so here or e-mail me at michaelsgoldberg AT yahoo.com.

A Tale from Scranton, Pa.: Classroom Teachers Need More Support If Inclusion Programs Are to Work

"Inclusion doesn't work unless class sizes are greatly reduced."

"Children are suffering due to lack of support."

"We need more help!"

These quotes are from classroom teachers in the Scranton, Pa., public school system, where two-thirds of 750 teachers surveyed listed the inclusion of special education students in mainstream classrooms as their top concern. The quotes are included in a June 25 front-page article in The Wall Street Journal entitled "Mainstreaming Trend Tests Classroom Goals," which lays out why the trend of including disabled children in public school classrooms is creating problems and why experts believe it is a key factor behind teacher turnover and a shortage of qualified teachers across the nation.

If a student in your family with an autism spectrum disorder is in a mainstream classroom or may have this opportunity in the future, this article would be good to read. The article uses stories from Scranton to illustrate that:

* Teachers don't get enough training to know what to do with children who have a wide range of disabilities, including autism. Without the right kind and amount of training, they can't educate these children effectively to help the entire class progress.

* There aren't enough special education staff to support disabled students and the classroom teacher. Among staff who are in place, special education aides typically are high school graduates and receive little training.

* The results not only create problems for the classroom. They create tension between parents and educators, and potentially among families who share a classroom. The "regular education" students feel neglected, even as the special education students fail to make much progress. So while the policy of mainstreaming, the idea of including disabled kids in mainstream classrooms fulfills goals laid out in federal law to provide every child with a qualified teacher in the least restrictive setting possible, the effect is to burn out teachers who don't have the training and support to make it work.

The bottom line message: while inclusion is a worthy goal -- mainstreaming has the potential to teach kids with all kinds of abilities important lessons they can learn from each other -- it's hard to see how inclusion can work well without the necessary resources. Districts like Scranton -- and one can see how there are many Scrantons across the U.S. -- need to hire more people, train them properly and support them. The people on the front lines of our education system need to be put in positions where they can succeed.

The Journal is a subscription-only publication, but if you can find Monday's newspaper at the library, or have a friend or colleague at work who can share this story with you, it would be worth your time.