Schafer Autism Report July 2, 2003

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Estelle Richman, the Secretary of the Pennsylvania Department of Public Welfare, has announced the formation and inaugural meeting of the Autism Task Force. Participants’ role is to identify weaknesses in the current system and to put forward suggestions that will allow the State to know what is really needed by all those affected by Autism.

John Sportelli-Wright, a parent from Pennsylvania who has been invited to participate and alerted us to this, reports that “Secretary Richman seems to understand that Autism is a problem with many facets, that can’t be dealt with effectively under the current system.” John adds, “the most encouraging thing, is that Secretary Richman seems to realize that Autism affects all ages and their families as well. We are hopeful that we can we can implement a “cradle to grave” care system that will at last recognize the uniqueness of each Autistic individual, rather than label them as MR.” If you have input you’d like to share with the task force contact John at jsw@paragonsearch.net. Here is Secretary Estelle B. Richman’s announcement:

Greetings! I am pleased to announce that you have been selected to serve on the Autism Taskforce. The goal of this taskforce is to explore the problems that people living with autism of all ages and their families face, identify the roadblocks that currently keep them from the services they need, and propose solutions that will enable them to obtain services that they are not receiving.

The first Autism Taskforce meeting will be hosted by the Department of Public Welfare on Saturday, July 26, 2003. The goal of the meeting is to begin designing a functional system for people (children, adults and their

families) living with autism. In the beginning of our day, we will gather as a general assembly to kick-off the meeting. In the afternoon, we will retreat into topic specific subcommittees to brainstorm and compose ideas related to different aspects of autism. The general assembly will then reconvene for organizational information and closing remarks before we end the day’s events. In the coming days, you will receive more information and a detailed agenda for the meeting.

I look forward to seeing you at the Autism Taskforce meeting and working with you on improving services for people living with autism. In the meantime, you are welcome to keep up to date on the latest news regarding the taskforce by accessing the DPW website at http://www.dpw.state.pa.us/ and clicking on the “Autism Taskforce” link.

Departments of Medicine, Microbiology, and Immunology/Division of Digestive Diseases, University of North Carolina, Chapel Hill, NC, USA.

Our rapidly expanding understanding of the genetics of inflammatory bowel disease (IBD) has led to important clinical applications.

It is becoming apparent that genes help determine the clinical phenotype, intestinal and extraintestinal complications, response to treatment, and drug toxicities in these disorders.

For example, NOD2/CARD15 mutations are associated with ileal Crohn’s disease, possibly with a fibrosing/obstructing phenotype, but do not influence responses to infliximab treatment.

Similarly, certain human leukocyte antigen (HLA) haplotypes are associated with aggressive, extensive ulcerative colitis and strongly influence extraintestinal manifestations of IBD, including uveitis and various forms of arthritis.

Expression of the glucocorticoid receptor b determines the clinical response to corticosteroids, whereas genetically regulated levels of enzymes metabolizing 6-mercaptopurine/azathioprine may determine clinical responses and toxicities to these important immunosuppressive agents.

Once we have a more sophisticated understanding of the mechanisms of genetic defects in IBD, it may be feasible to restore physiologic function to prevent the onset of disease in susceptible individuals.

However, because we do not have the ability to prevent disease at the present time, it is premature to screen offspring and first-degree relatives of IBD patients for the NOD2/CARD15 genotype.

One can anticipate that it will become feasible to prospectively determine a patient’s genotype and to individualize a drug regimen, leading to highly effective, safe treatments for IBD patients on a rational, rather than empiric, basis.

Reuters Health - British public health authorities have warned that more children risk catching measles, mumps and rubella as uptake of the triple MMR vaccine continues to fall. The Health Protection Agency said on Monday its latest figures showed that MMR uptake among two-year olds fell to 78.9 percent in the first three months of the year -- a drop of 2.1 percent on the previous quarter. This followed a similar decrease from 83 to 81 percent in the quarter before.

There were 151 cases of measles, 441 cases of mumps, and four cases of rubella in the first quarter of 2003. Only six of the children who contracted measles had been vaccinated, including one child who received a single measles jab rather than MMR.

Uptake of the triple vaccine has been falling in the UK for several years after researchers at London’s Royal Free Hospital suggested a possible link with autism. The link has been denied by most researchers who have examined the evidence.

Commenting on the latest figures, the agency’s Natasha Crowcroft said in a statement: “We are concerned because as coverage falls more children are left susceptible to measles, mumps and rubella. We would like to reassure parents that MMR is the safest and most effective way to protect our children.”

Crowcroft said research showed that the majority of parents were still confused about the safety of MMR.

“They perceive that medical science gives equal weight to both sides of the argument when in fact the balance of scientific evidence is overwhelmingly in favor of the vaccine being safe.”

In a stunningly cynical nullification of the clear intent of the No Child Left Behind Act’s “persistently dangerous schools” provision, which lets parents transfer their children from violent schools to safer ones, the New York State Education Department has approved a regulation which only counts weapons crimes when deciding whether a school has an excessively dangerous environment.

Muckraker FLIES sticking ON THE regents’ WALL could just about hear Deputy Commish Jimbo Kademus at last week’s Board of Regents meeting: “Now

sufficiently degrading of educational environments so as to warrant parental choice transfers. But a fellow with a knife – hey – now that’s what’s what should totally make a kid scared to go to school. And we can’t have that! Can we?”

You have a child who doesn’t learn the way other children do. Maybe he is autistic. Maybe she processes information so slowly she can’t comprehend what the teacher is saying. Maybe he is mentally retarded.

A perfect storm is brewing in America’s public schools that jeopardizes the education of such children.

Collapsing state budgets are slamming head-on into more demanding and costly educational requirements from the federal government -- from President Bush’s No Child Left Behind policies to new regulations for IDEA, the Individuals with Disabilities Education Act.

Nowhere is the threat to special ed students in public schools greater than in Oakland.

Before I tell you about Oakland, let me suggest why you should care about special ed. If disabled children are not provided the services they need, they languish in general ed classrooms with your children. Your child’s teacher spends a disproportionate amount of time with the disabled child. The disabled child, who might be frustrated because he doesn’t understand the lessons or has horrible social skills, might be disruptive, thus interfering with your own child’s education.

And if special ed kids -- like all kids -- don’t gain the skills they need to succeed in life, they are more likely to end up in jail or on the welfare rolls. But mostly you should care about special ed because all children, not just smart, mainstream children, are entitled to a fair chance to succeed in life.

So back to Oakland, where the state recently took over management of the bankrupt school system and issued a $100 million emergency bailout loan.

Special ed has become a leading scapegoat of the district’s enormous debt. The department overspent its budget, but so did the entire school district. There was a systemwide failure of budget controls. Yet, only the special ed department has been wiped out. Vivian Lura, an innovative and respected advocate of disabled students, is out as director and reassigned to the classroom. Nearly her entire administrative staff has also been reassigned.

Even more worrisome for parents of Oakland’s special ed students is that Lura has been replaced by an administrator whose special education experience begins and ends with 12 semester credits in a doctoral program in 1991. Phyllis Harris, who had been director of new-teacher training, now suddenly is supposed to oversee the education of 6,000 special-ed students and make sure district schools are complying with the complex tangle of state and federal laws that govern special ed.

“We’re worried,” one special ed parent said. “We’re beyond worried.”

Randall Ward, who was appointed by the governor to replace ousted Oakland schools superintendent Dennis Chaconas, was so inundated with e-mail about special ed that he called a town-hall-type meeting. On the evening of his fourth day on the job, he listened and took notes as a packed audience of parents, teachers and special-ed advocates made the case that special ed is too important and complex to be managed by inexperienced leaders in an attempt to cut costs.

“I have no notion of trying to balance the budget on the backs of your children,” Ward told them.

Ward is widely respected as a wizard adept at serving both the accountants and the students. He surely understands the special-ed challenges in Oakland. The district is struggling with the local effects OF a statewide 276 percent increase in autism over the past decade. It is serving a disproportionate number of special-ed children living in group and foster homes in Oakland. It is absorbing the startup costs of new programs, which will save money in the long term, that are designed to decrease the number of students the district now transfers into expensive, specialized nonpublic schools.

Ward knows his mandate is not simply to cut costs. He must also provide every student with an opportunity to succeed. Every department can withstand budget cuts; the critical issue is how competently the money is spent. Indeed, it will take an expert hand to navigate the storm brewing around special ed in Oakland.

With their trusted special-ed director gone and an inexperienced administrator now in charge, the worried parents and teachers of Oakland’s most vulnerable students are echoing the inescapable question posed at the town-hall meeting: “I ask you, Dr. Ward, what’s going to happen to our kids?

A Queens autism-support group created a fund yesterday to raise money for the family of a Richmond Hill girl who drowned in her pool, after the girl’s father said he could not afford the funeral.

“A plot is a huge amount of money,” said Andrew Baumann of the Ozone Park-based New York Families for Autistic Children. “And who thinks they’re going to need a grave for a 5-year-old kid?”

Pricilla Garcia drowned Saturday when she followed her severely autistic older brother, Joshua, into the family’s backyard pool. She died Sunday morning.

The girl’s father, Victor Garcia, said yesterday that he is unemployed and unable to raise the roughly $11,000 it will cost to bury his child.

“They’re asking for a ton of money that I don’t have,” said Garcia, 29, whose son’s case is managed by the autism-support group.

Garcia said he is taking classes toward a certificate in real estate investment. He shares an apartment with his son and mother. He said the family gets by on the roughly $7 an hour his mother makes cleaning offices.

He said the funeral estimates were staggering. A plot in Evergreen Cemetery will cost about $4,000, the funeral itself another $4,000 and the tombstone $3,000.

“So far I’ve only mustered up $2,000,” he said. Tax-deductible contributions to the Garcia Family Fund can be sent to New York Families for Autistic Children at 95-16 Pitkin Ave., Ozone Park, NY, 11417.

Some stories about missing kids and rescues have happy endings. This is one of them.

Christian Pfuhl, 4, was playing outside early Sunday evening. About 7:30 p.m., he evidently wandered from his townhouse complex to a neighboring one on the 6000 block of Candace Avenue in Inver Grove Heights.

To his mother, Jolene Nelson, the boy seemed to be missing forever. It was more like 20 minutes, but this mother had additional reason for worry: Christian suffers from autism, a neurological disorder that hinders his communication skills and development. With police called and the neighborhood alerted, a frantic search began.

Enter Rick Pedrow, 44, who had just arrived home with his wife. When he realized he had forgotten something in his car, Pedrow — dressed in boxer shorts and a T-shirt — went out to the driveway to retrieve it. It was then that a police officer alerted him that authorities were looking for a missing little boy in the area.

Pedrow joined the search. A couple of neighborhood kids told him they had seen a little boy, who was wet, playing near a deep ditch.

The ravine is about one-third of a mile in circumference, ringed by town homes and a parking lot. It has a steep bank on one side. Near the bottom is a marsh overgrown with cattails, weeds and brush tall enough to easily obscure a child. Because of the recent rains, the water was unusually deep in the gully.

Pedrow waded waist deep into the muck, saw ripples in the water and spotted a boy walking in shoulder-deep water toward an even deeper part of the pond.

Pedrow called out, but the boy didn’t respond. He caught up to the child and carried him up the hill to safety.

While Christian couldn’t articulate his fear or his thanks, his body language said it all.

The wide-eyed child wrapped his arms around his rescuer’s neck and his legs around Pedrow’s waist. His head rested on Pedrow’s shoulder. The child clung tightly and wouldn’t let go, even as officers and neighbors gathered around.

“I don’t think he was coming out of there, unless somebody got him out of there. I think he would have drowned without making a single sound,” Pedrow said. “The credit to all of this goes to God. I was just the vessel and the tool used to pull the boy out.”

Karla Pedrow, who had joined the crowd of neighbors, said it was a proud sight: Her husband, standing there in his wet, dirty boxers and T-shirt, with a frightened but safe child clinging to him.

Next time, though, she might ask him to dress a little more substantially when he goes out to the car.

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