Disability Scoop: High Court Rejects Autism-Vaccine Case

The U.S. Supreme Court has declined to hear a case brought by a woman who says her son’s autism was caused by vaccines he received.

Chandra D. Price sought compensation in 2008 from the National Vaccine Injury Compensation Program, later claiming that her son Christopher T. Wynn’s autism was caused by vaccines “being given in back-to-back increments, and by mercury toxicity.”

The U.S. Department of Health and Human Services moved to dismiss the claim arguing that Price had waited too long after her son was diagnosed in 1994 to seek compensation. Under the Vaccine Act, injury claims must be brought within 36 months of the onset of symptoms.

After years of back and forth, an attorney for Price filed a motion to dismiss her petition in 2012. Nonetheless, Price pressed forward independently and sought to reopen the case explaining that her attorney “misunderstood when Christopher’s last vaccine had been administered, which caused him to erroneously conclude that the claim had been filed outside of the Vaccine Act’s statute of limitations.”

However, a special master determined that Price did not provide sufficient reason for the case to be reopened and her request for a subsequent review of the matter was deemed to have been filed too late.

Ultimately, Price brought her case before the U.S. Court of Appeals for the Federal Circuit, which ruled last year that Price did not have grounds to proceed.

“Under the Vaccine Act’s limitations period, Ms. Price was required to file her claim within thirty-six months, or by June 29, 1997,” the ruling stated. “Though… the thirty-six month limitation period is subject to equitable tolling, there is no indication that equitable tolling would apply to Ms. Price’s delay of over ten years in filing her Vaccine Act Petition.”

Price then asked the Supreme Court to consider the matter, but in an order this week, the high court declined without any comment.

The court’s action comes amid renewed attention to vaccines with the U.S. Centers for Disease Control and Prevention reporting more than 150 cases of measles across the country so far this year. Most of those who have contracted the illness were not immunized.

Medical experts have widely discredited any link between vaccines and autism. A 1998 study largely responsible for sparking fears about an association between autism and the measles, mumps and rubella vaccine was retracted in 2010.

Disability Scoop: In Fight Over Service Dog, School Board Is Brought To Heel

Stevie is a good dog. He doesn’t eat from the table or have accidents in the house. And he never pulls on his leash.

The white-and-tan Staffordshire terrier also has a special talent: He alerts caregivers when his little boy, Anthony Merchante, is going to have a seizure or has trouble breathing.

Anthony’s mother, Monica Alboniga, tried for two years to persuade the Broward County School Board in South Florida to permit Stevie, a trained service animal, to accompany the 7-year-old on campus. But school administrators repeatedly said Stevie didn’t belong at school. And they hoped that a Fort Lauderdale federal judge would agree with them.

Instead they got a scolding. Earlier this month, U.S. District Judge Beth Bloom ruled that Stevie should be allowed to join his human friend at Nob Hill Elementary — and without a series of requirements the school district had tacked on.

Stevie, Alboniga said, “has saved Anthony’s life. I feel completely safe every time he is with the dog, because I know the dog will look for help.”

As the lawsuit progressed in federal court, the school board allowed Stevie to go to school every day, but administrators continued to fight the case.

“The district has always permitted the service dog at the school,” said the district’s spokeswoman, Tracy Clark. Alboniga “pursued the lawsuit as the parties [the district and the plaintiff] differ somewhat in the interpretation of the federal regulations governing service animals. The district’s legal department is reviewing and analyzing the order.”

Had the district won, Alboniga’s lawyer said, 4-year-old Stevie almost certainly would have been expelled.

Anthony suffers from a host of serious disabilities: He has cerebral palsy, spastic paralysis, a seizure disorder, and he cannot speak. To get around, he depends on a wheelchair, to which Stevie is tethered most of the time.

Alboniga, 37, who is raising her son alone, paid to obtain and train a dog up to the specifications of Assistance Dog International Standards, records say. Stevie can aid caregivers in a variety of ways: He can step onto Anthony’s wheelchair and lay across the boy’s lap; once there, the dog is trained to help stabilize Anthony’s head so his airway isn’t impeded.

“Stevie was also trained to ‘tell’ or ‘alert’ human responders in the event that [Anthony] was experiencing a medical crisis,” Bloom wrote. The dog can jump on a sensor mat that activates an alarm, or bark to get the attention of caregivers. He also wears a red service dog vest that holds medical supplies, as well as detailed instructions on how to respond to medical emergencies.

“Stevie lets me know when he has seizures or problems breathing. He pushes me toward Anthony. He barks,” Alboniga said. “When Anthony is having convulsions, he starts barking and goes looking for us. Then he goes back to Anthony and stays with him.”

At home in Sunrise, Fla., Stevie is also a house pet, although he isn’t all that interested in Anthony’s baby sister, Mariangel, a 5-month-old, because he seems to intuitively understand that Anthony is his full-time job. “He loves Anthony,” Alboniga said. “And Anthony loves Stevie, too.”

“He is a very good dog,” Alboniga said. “He is very sweet, and very obedient. He is the best there is.”

All 50 pounds of Stevie rest next to Anthony in bed each night, and the boy and dog are virtually inseparable. That’s partly by design. It’s best if service animals spend almost all of their time with their “targets,” trainers say, and long separations diminish the animal’s “responsiveness and effectiveness,” Bloom wrote.

Alboniga first approached the school board in May 2013, and submitted a formal request for the dog two months later. In its reply in August 2013, the school board said Stevie must obtain a host of vaccinations that rarely are applied to dogs, required Alboniga to obtain costly liability insurance, and mandated that she provide, at her own expense, a “handler” for Stevie.

The requirements, said Alboniga’s lawyer, Matthew Dietz, amounted to “an impossible barrier,” and violated federal civil rights laws that give preference to the choices of people with disabilities. “The fact that the judge said the school board’s rules made no sense vindicates this woman’s belief that what she was doing for her son was the right thing,” Dietz said.

For the first four months that Anthony attended Nob Hill Elementary School as a kindergartner, beginning in August 2013, Alboniga worked, at the district’s requirement, as Stevie’s handler herself. Later, the school board appointed a custodian to work as Stevie’s handler. His responsibilities were “to walk Stevie alongside [Anthony] with a leash, instead of allowing Stevie to be attached” to the boy’s wheelchair, and to take the dog outside to urinate. The custodian also ensured that other children did not try to play with the dog.

“While at school,” the judge wrote, “Stevie does not eat or drink. Nor does Stevie defecate or make stains, or require cleaning or exercise.” Alboniga, the judge said, “attends to Stevie’s daily feeding, cleaning and care needs.”

But administrators continued to assert in the lawsuit that it was not the district’s responsibility to help the boy keep Stevie at school. Anthony’s “individual educational plan” — a detailed accounting of the school’s accommodations to the child — does not mention Anthony’s use of a service dog, Bloom wrote.

Anthony found a friend in the U.S. Department of Justice. The department’s civil rights division enforces the Americans with Disabilities Act, landmark legislation passed by Congress in 1990. Last month, the DOJ weighed in on the lawsuit, arguing that the school board “fundamentally misunderstands” ADA regulations, which require that “public entities generally must permit individuals with disabilities to be accompanied by their service animals.”

“Congress specifically intended that individuals with disabilities not be separated from their service animals, even in schools,” the DOJ wrote.

The school board contended that it wasn’t necessary for Stevie to accompany Anthony to school since the elementary’s staff already was trained to perform the same tasks as Stevie. The district also argued that, even if Stevie was permitted on Nob Hill’s campus under the ADA, it was not reasonable for the district to bear the costs of the dog’s handler.

The judge wrote that the dispute pivoted on whether it was reasonable to expect the district to allow Stevie on campus under the federal civil rights law.

The judge ruled that it was indeed reasonable, “in the same way a school would assist a non-disabled child to use the restroom, or assist a diabetic child with her insulin pump, or assist a physically disabled child employ her motorized wheelchair.”

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Disability Scoop: Oscar Contender Depicts Parents Coping With Son’s Diagnosis

A short film documenting the intimate thoughts and fears of a couple after learning that their baby was born with a rare disability is up for an Oscar.

Polish film student Tomasz Śliwiński and his wife Magda Hueckel turned the camera on themselves when they learned that their son Leo had congenital central hypoventilation syndrome, also known as Ondine’s Curse. The condition keeps the boy from breathing while he sleeps and means he will likely face a lifetime of relying on a ventilator.

“We really felt our life ended at that time,” Śliwiński told TODAY. “We thought we had to be locked at home with Leo, have no friends, so filming was therapy for us.”

Called “Our Curse,” the documentary follows the couple as they adjust during their son’s first months of life, coping with an array of medical equipment needed to keep the boy alive, confronting their own fears and learning to love Leo.

The footage includes frank conversations between Śliwiński and Hueckel on the couch in their Warsaw home with Śliwiński going so far as to express his concern that his son may commit suicide when he’s able to understand his disability.

Now 4, however, Śliwiński told TODAY that Leo is doing well and learning to speak and the family is moving forward.

“The therapy is over and we have to start living. It was natural we had to stop shooting this and start enjoying life as fully as we can,” the filmmaker said.

The 27-minute film is one of five nominated in the documentary short subject category. The winner will be announced at the Academy Awards on Sunday.

Students with Disabilities have Room on the Bench in NY


NEW YORK (JTA) — Standing in the back of an open elementary school classroom at the Luria Academy, a Jewish Montessori school in Brooklyn, Dana Keil asks in a whisper if a visitor can tell which children in the room have special needs.

I guarantee you won’t be able to tell,” she said.

And she’s right.

Yet Keil, 25, estimated that nearly half the children in the room have some type of disability that requires what’s called an “individualized education program,” or IEP.

As the director of special education and support services at the Prospect Heights academy, Keil is a strong advocate of including all types of children, including those with disabilities, into the same classroom.

Last September, she earned a $100,000 fellowship from the Joshua Venture Group, a Jewish nonprofit, to start Room on the Bench. Through the Luria-based initiative, Keil is beginning to council other Jewish community schools in the New York City area on how to implement inclusion models.

“Even though the Jewish community has been progressive for centuries, this is one area where we are honestly very far behind,” Keil said.

Inclusion is standard practice in public schools thanks to the Individuals with Disabilities Education Act passed in 1990. The federal statute mandates that a child with a disability cannot be placed in a separate classroom unless the severity of the disability precludes learning in a normal classroom. However, the law does not apply to private schools, and some disability advocates say that the Jewish community has not done enough to make children with disabilities, and their families, feel welcome in its day schools.

Keil said that many Jewish day schools do not accept applicants who have any kind of IEP, even if their disabilities are purely physical and not intellectual. Although an IEP can be prescribed for an incredibly wide range of disabilities, from spina bifida to an autism spectrum disorder, Keil said that most Jewish day school administrators “see an IEP as an IEP instead of looking at the individual child.”

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NYT: For Special-Care Residents, New York State Policy Means Leaving Home

Long after lunchtime one recent afternoon, John Cosentino sat at his usual table, eating his usual snacks. On this day, he was the only resident of the Brooklyn Developmental Center in its cavernous cafeteria, drafty and lit with the bleakness of an earlier era.

His father, Tony Cosentino, arranged fruit salad, nuts and pretzels on a paper plate, which John grabbed. Mary Ann Cosentino spoon-fed her son yogurt.

“Very good, John!” she said.

She tensed when John started waving his left hand near his forehead, past the ear he long ago mutilated and the blue eye blinded in a fall at the center. This was his sign that he might hit himself. Instead, he gestured for his white mitts from his L.L. Bean canvas bag monogrammed “J C,” and put them on. Then he suddenly stood up and pushed back his chair. Visit over.

For John Cosentino, 50, an intellectually disabled adult with profound autism and self-injurious behavior who does not speak, this routine has been his refuge. He has lived at the sprawling, state-run center in East New York off the Belt Parkway since he was a teenager. Sometime this year, however, his routine will abruptly end, and he, like the other remaining residents of the institution, will probably enter a group home.

Continue reading NYT: For Special-Care Residents, New York State Policy Means Leaving Home

NYT: More Differences Than Similarities Are Found in Autistic Siblings

Most siblings with a diagnosis of autism do not share the same genetic risk factors for the disorder and are as distinct in their behaviors as any brothers and sisters, scientists reported on Monday in a study that came as a surprise to many doctors, if not to parents.

Scientists analyzed genetic material from 85 families, using a technology called whole-genome sequencing. Unlike other approaches, which illuminate a sample of a person’s genetic material, the whole-genome technique maps out the entire voluminous recipe, every biological typo, every misplaced comma or transposed letter. Each of the families had two children with a diagnosis of autism.

The researchers focused their analysis on about 100 genetic glitches linked to the development of autism. They found that about 30 percent of the 85 sibling pairs in the study shared the same mutation, and about 70 percent did not. The sibling pairs who shared a genetic glitch were more similar to each other, in their habits and social skills, than those pairs whose genetic risks were different, the study found.

The finding drives home the exasperating diversity of autism, even in the most closely related individuals. And it suggests that scientists will need to analyze tens of thousands of people, perhaps more, to tell any meaningful story about its biological basis.

Experts said the report, in the journal Nature Medicine, would most likely encourage changes in clinical practice. Some hospitals analyze the genetic profile of the eldest affected sibling to try to understand an infant, or to advise parents of the odds of having another child with the same disorder. That approach is not informative in most cases, the study authors said.

“This is very important work for people like me,” said Valerie South, an emergency nurse in Oakville, Ontario, outside Toronto. Her sons Cameron, 20, and Thomas, 14, have severe autism. In a family of four or more, the odds of having two children with autism is about one in 10,000. Continue reading NYT: More Differences Than Similarities Are Found in Autistic Siblings

LA Times: Autism genomes add to disorder’s mystery

Less than a third of siblings with autism shared the same DNA mutations in genes associated with the disorder, according to a new study that is the largest whole-genome sequencing for autism to date.

Canadian researchers sequenced whole genomes from 170 siblings with autism spectrum disorder and both their parents. They found that these sibling pairs shared the same autism-relevant gene variations only about 31% of the time, according to the study published online Monday in the journal Nature Medicine.

More than a third of the mutations believed to be relevant to autism arose in a seemingly random way, the study also found.

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NPR: Museum Opens Doors, Turns Down Lights For Autistic Kids

On a Saturday at the Pacific Science Center in Seattle, Wash., life-size robotic dinosaurs roar. A giant video monitor shows a person sneezing as a spray of mist shoots down from the ceiling. Nearby, naked mole rats scurry blindly through a maze of tunnels.

And since it’s all mud and rain outside, the place is packed with curious children and adults trying to keep up with them.

Loud noises, bright lights, crowded spaces: This is exactly the situation Mike Hiner tries to avoid with his 20-year-old son Steven, who is autistic.

He’s one of the many children and young adults in the Northwest who have some form of autism spectrum disorder, or ASD: In the Seattle School District, 10 percent of the special education population has ASD, and in nearby Bellevue, that figure is 17 percent. And because overstimulation can be painful for children with autism, many parents with autistic children avoid crowded, sensation-filled situations altogether — which can mean missing out on fun outings.

But some museums, including the Pacific Science Center, are recognizing the problem, and toning down the sights and sounds. One Saturday each month, the museum opens up early for families with ASD — like the Hiners, here before official hours begin.

“We’ve got the library, you know we have our usual routines that we do,” Mike Hiner says. “So it’s really nice coming here for a change. The butterfly exhibit kind of freaked him out, but that’s all right, we had fun.”

For two hours, the lights are dimmed, the loud noises are turned down and there is room to move around because it’s less crowded.

Mike Hiner says he wouldn’t have come here with his son during regular hours.

“We’re going to spend money to go see something and then you get there and you have to leave and it’s sometimes difficult,” he says. “So this is really nice.”

For families with kids with autism, maintaining the requisite quiet and calm can be limiting, and lead to feeling a little isolated. The Pacific Science Center’s Renee Gervais says the whole point of opening up early on these Saturdays is to offer more access.

“What we want is to be able to provide our programming, provide these experiences for children who may love them, who may be able to kind of run with them, who may become very inspired by that interaction,” she says.

Other museums and organizations across the country have similar programs, from the Smithsonian in Washington, D.C., to the Dallas Museum of Art. Even NASCAR holds events where autistic children go to the track to watch a live race from a quiet room.

Inside the butterfly house (the place Steven didn’t really like) unpredictable, electric blue and yellow flying insects land on tropical flowers for a quick snack. Eight-year-old Desmond Tsai takes it all in. Jeffrey Eckenroade, a docent, introduces Desmond to the heavy scent of gardenias and Jasmine.

“What does that flower smell like?” Eckenroade asks.

“Honey,” Desmond answers. “Honey like a honey-made toast.”

Desmond’s father, Gordon Tsai, says his son would never open up to a volunteer like this if it were loud and crowded.

“Clearly you can tell he’s interested and he has a lot of questions and it’s just an opportunity to ask them,” Gordon Tsai says. “Normally he wouldn’t even try to, but now he’s totally engaging with them, which is a side we rarely see.”

The two hours go by fast and 20-year-old Steven Hiner has had a great time. His sister Elizabeth helps him recap the highlights: the dinosaurs and the puzzles. “They’re good,” he says.

And with that, Steven hops onto his sister for a piggyback ride to go check out the planetarium.

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From failure to community: College dropouts find new direction in L’Arche

Note: This is the first story in a series titled Where are they now? Life after L’Arche, which features the impact L’Arche Greater Washington, D.C., had on former assistants’ careers, faith, relationships, and lifestyles.

It was Lent, and Michael Carlisle was depressed. His plan to study philosophy and become a professor of Catholic sacred theology had fizzled out three years earlier. He was holding steady with a maintenance job at Cabela’s, an outdoor sports equipment retailer, but he was struggling to care much about life.

It was Lent, and L’Arche Heartland in Overland Park, Kan., was full of life. When Michael arrived at prayer night there was joyful shouting and a lot of laughter. The community had decided to forgo their usual dinner and eat only rice and beans so they could be in solidarity with L’Arche in Argentina, sending the dollars they saved on their meal to support those who had less.

Michael was there at the invitation of Fred Kaffenberger, a friend he’d met through involvement in a Catholic lay group called Communion and Liberation.

Twenty-five years earlier, Fred was in a position similar to Michael’s. His lack of motivation for studying computer science landed him on academic probation, and eventually he dropped out of college completely.

“I realized I couldn’t get the discipline and skills I needed by myself,” Fred said. “I figured if someone else was dependent on me I could do it. I could learn.”

He wrote to three different organizations inquiring about volunteer work. L’Arche was the only one that wrote back. So, knowing nothing of L’Arche’s founder Jean Vanier and with no particular knowledge or interest in disability services, he set off to be part of the community in Washington, D.C.

The year was 1988, and L’Arche’s home on Ontario Road in Adams Morgan was just five years old. In December of that year, Fred became one of the founding members of Euclid House, along with Dottie Bockstiegel, Wendy Moore, Gene Sampson, Glenn Houser, and Barbara Palmer. *

Fred celebrated his 21st birthday in L’Arche, and the trajectory of his life quickly began to change. He read voraciously during his spare time, consuming the works of such authors as Walker Percy and Flannery O’Connor. He and his housemates volunteered at the Potter’s House, a coffee shop with a service and social justice bent. They worked, prayed, and played together.

Early in 1989, Fred and other assistants traveled to Quebec for a retreat with Jean Vanier where L’Arche’s founder impressed upon him the underlying spirit of the organization.

“I didn’t have a lot of emotional intelligence,” Fred confessed. “I learned a lot about how to be with other people.” This wasn’t always easy. His housemates Gene and Glenn had spent their childhoods and their adult lives prior to L’Arche in Forest Haven, an institution with a notorious reputation where they’d had to keep their wits sharp and look out for themselves. At times, the housemates’ rougher edges caused conflict. But it was authentic, and it got Fred out of bed each day.

Growing up, Fred’s family was part of the Christian Family Movement, a Catholic network focused on family relationships and living out their faith through action. It was a strong foundation, but reflecting back Fred muses that his faith was perhaps a bit rigid.

In L’Arche, he took a closer took at the Beatitudes, eight blessings recorded as part of Jesus’ Sermon on the Mount. He’s quick to admit that many of L’Arche’s lessons took a long time to sink in (or, in the case of chore skills that would make him a better husband, never really stuck); but in L’Arche his faith was softened and deepened.

“The Beatitudes stayed with me because faith is about the love that Christ has for us that makes us free and allows us to grow,” he said. “It isn’t so much about what I do for other people, or the accomplishments that I have, but remembering that gaze on me.

After a year in L’Arche, Fred was ready to take on college again. This time, he focused on English. He completed a bachelor’s degree, then a master’s, and then a certificate in teaching. Lessons from L’Arche stuck with him when he taught at an all-girls Catholic school in the South Bronx after graduate school and in every job he’s had since.

“When someone is doing something to me or is against me, it’s because they have a great wound,” Fred said.

Now, L’Arche is back in his life in a way he never expected.

In the spring of 2014, Fred and his wife, Karen, lost their home on a short sale. Plus, Fred was looking for a better job. To say the least, it was a challenging time for their family.

Fred had visited the fledgling L’Arche Heartland community once soon after leaving D.C., but hadn’t connected since. While looking for work Fred discovered that the community was accepting applications for assistants. He thought Michael might be a good fit.

It turned out Fred was right. Michael moved in to Mercy House, one of Heartland’s five homes, in June 2014. At first, Michael thought it would just be a better job than working retail. He now sees that it’s a whole life—“a really beautiful life”—that he can imagine living for several years or more.

“I’ve learned to really care about life again,” Michael said. “Living here has forced me to live outside of myself and to enjoy life, to see the value in it, in myself, and in the people around me.”

Fred and Karen now live in the L’Arche Heartland neighborhood and are being drawn in to the community through their friendship with Michael. Fred reflects that it’s taken him a long time to see the value of community and the value of people more than accomplishments.

“But you know,” he said, “If it weren’t for failure, a lot of good stuff would never have opened up like it has.”

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Disability Scoop: Self-Advocate Gets State Of The Union Invite

Sara Wolff fought hard to help others like her, so U.S. Sen. Bob Casey, D-Pa., offered her a special thanks.

He invited Wolff to sit in the U.S. House gallery next Tuesday to watch President Barack Obama deliver the State of the Union speech. Wolff helped Casey get a bill passed that helps those with disabilities.

“I was very surprised and excited at the same time,” Wolff, 31, of Moscow, Pa. said Monday. “This is my first time. I’m very excited. A little bit nervous, but very excited.”

The Achieving a Better Life Experience Act, ABLE Act for short, allows people with disabilities to save money in untaxed accounts similar to tax-advantaged accounts used by families who save for college. The act also allows Americans with disabilities to save money for education, housing, transportation and health care without losing eligibility for government programs.

The bill passed the House on Dec. 3 by a vote of 404-17. In the Senate, the provision was part of a larger tax bill that passed 76 to 16.

Obama signed the bill into law Dec. 19.

“I call it history in the making,” Wolff, who has Down syndrome, said. “It’s very important for people with disabilities, Down syndrome, autism, etc. Now, they can save money for their future.”

Casey said he wanted to honor Wolff because of her advocacy. She kept him focused on getting the bill passed with a catchphrase, “Stay pumped,” he said. Wolff testified for the bill at a Senate hearing in July.

“If she wasn’t the leading, she was one of the leading voices in the country for passage of the ABLE Act,” he said. “I wanted to acknowledge her contribution, which was substantial. She was a personal witness, which was very compelling.”

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