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: 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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Disability Scoop: Lawmakers Look To Improve Care For Kids With Complex Needs

Finding care for children with medically complex or rare conditions can force parents to tap into networks of highly specialized physicians and hospitals scattered around the country.

This is especially challenging when the children are covered by Medicaid, because each state-run program has a different benefit package, payment structure and provider network. Conflicting regulations and paperwork requirements can delay treatment and lead to unnecessary hospitalizations. Medicaid’s state-based rules also have thwarted efforts to develop a national clinical database researchers could use to find ways to improve the care of children with rare conditions.

A new bill in Congress would amend the 50-year-old Medicaid law to make it easier for health care providers in different states to coordinate the complicated care of these kids.

The proposal — the Advancing Care for Exceptional Kids Act — also calls for the creation of a national database of Medicaid claims data that researchers could use to study complicated conditions that affect one in 25 children nationwide. Continue reading Disability Scoop: Lawmakers Look To Improve Care For Kids With Complex Needs

The Tennessean: Last large state institution for disabled to close

The state has agreed to close a 40-year-old facility in east Tennessee for people with limited mental functioning, a move that advocates say marks a welcome end to an era of housing people with disabilities in large state-run asylums, often for the majority of their lives.

Under the plan, the Department of Intellectual and Developmental Disabilities will shutter Greene Valley Developmental Center in Greeneville by June 30, 2016, moving the remaining 96 residents into more home-like settings integrated into neighborhoods.

The plan to close Greene Valley is part of an overall agreement submitted in federal court last week. It would end a long-running lawsuit by advocates for people with disabilities, their parents and guardians, and the federal government against Tennessee over conditions in its institutions for people with intellectual disabilities, defined as possessing an IQ of 70 or less.

Those groups filed suit in 1995, after a Department of Justice investigation uncovered widespread abuses, including inadequate medical care, abusive treatment, failure to provide education and insufficient staffing at state institutions. The facilities have been under the federal court’s oversight since 1996.

A second large state-run institution, Clover Bottom Developmental Center, is scheduled to close this summer, five years behind schedule. About 20 residents still remain on that aging campus, which once housed 1,100, located near Hermitage in northeast Nashville.

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NYT: Hoping for Smiles, Mother Gives Autistic Son a Spider-Man Party

The boy stood alone in the dim hallway of the housing project community center. He stared at a row of lockers, at a vending machine, at nothing.

In the next room, children and their parents and grandparents shouted and laughed over dance music booming from somebody’s speaker. The party was up and running.

The boy’s name was Jamel Hunter, and the party, on a Saturday night in East Harlem in November, was for him. He had just turned 8. His family did not notice him leave the party room and slip outside to the hall. They were used to that.

After a while, Jamel came back.

Every available surface of what, an hour earlier, had been an empty community room had been decorated in the colors and likeness of Jamel’s favorite superhero, Spider-Man. There were Spider-Man balloons, cupcakes, a spider made of frosting on the birthday cake, even a homemade pin-the-tail-on-Spider-Man game.

Jamel’s mother, Phyllis Atwood, 46, sat and looked around. A Spider-Man mask dangled around her neck. She was already wiped out. She had put a lot of work into this night, from reserving the room to finding the theme song to the Spider-Man television show to making her famous potato salad. The night was part party and part prayer, for it was a first for Jamel, and she wanted it to be perfect.

Jamel has autism, and slight variations from his routines can be jarring, sending him into screaming fits or silent retreats to his own thoughts. The party was a huge leap. The volume of the music, the rows and rows of trays of barbecue and soft drinks and desserts, the brightly colored balloons — it was as if Ms. Atwood were making up for lost time, throwing him three or four parties at the same time. Continue reading NYT: Hoping for Smiles, Mother Gives Autistic Son a Spider-Man Party

NYT: Separated From Brother, Left to Toil Far From Home

NEWBERRY, S.C. — A shabby bunkhouse sits just beyond the shadows of this small city’s colossal Kraft meatpacking plant. Inside live a few older men with nowhere else to go, and several younger men who pay to throw down a mattress.

There is also Leon Jones.

Mr. Jones, 64, has an intellectual disability and a swollen right hand that aches from 40 years of hanging live turkeys on shackles that swing them to their slaughter. His wallet contains no photos or identification, as if, officially, he does not exist.

And yet he is more than just another anonymous grunt in a meat factory. Mr. Jones may be the last working member of the so-called Henry’s Boys — men recruited from Texas institutions decades ago to eviscerate turkeys, only to wind up living in virtual servitude, without many basic rights.

That seemed to be the end to an outrageous but isolated Iowa story: men abused, rescued and reintegrated into the community. But a few lingering clues suggested that at least one other Henry’s “boy” was out there: a Leon Jones, living beside a South Carolina turkey plant.

So, on a recent autumn morning, I knocked on the door of this bunkhouse, sitting beside a mobile home with its door open in abandonment, not welcome.

“Hi,” said Leon Jones.

Tall and with an easy smile, Mr. Jones has been working turkey ever since he left a state institution in 1969. For decades, he hung live birds from shackles; now he works an evening shift, sweeping up and disposing of turkeys that arrive by truck already dead. D.O.A.s., they are called. Continue reading NYT: Separated From Brother, Left to Toil Far From Home

Supreme Court To Weigh Police Obligations Under ADA

The U.S. Supreme Court agreed last week to hear San Francisco’s appeal of a ruling allowing a mentally ill, knife-wielding woman to sue police for shooting her, a case that could set standards for police treatment of people with disabilities.

The Ninth U.S. Circuit Court of Appeals in San Francisco ruled in February that a jury ought to decide whether two officers should have waited for backup rather than charging into Teresa Sheehan’s room and shooting her when she lunged at them. The 2-1 ruling reinstated Sheehan’s damage suit, which a federal judge had dismissed.

The nation’s high court granted review of the case last Tuesday and will schedule a hearing for a ruling due by the end of June.

The central issue is how the Americans with Disabilities Act, which requires government agencies to make reasonable accommodations for those with disabilities, applies to police conduct toward a person with mental illness who may be violent.

“Police officers deserve clarity concerning their obligations under federal law, and public safety demands it,” San Francisco City Attorney Dennis Herrera, whose office represents the officers, said. “We hope the high court reverses the Ninth Circuit’s mistaken decision and restores reasonableness to this area of the law.”

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ABC: Pope Meets With Autistic Children

Pope Francis tenderly embraced children with autism spectrum disorders, some of whom avoided meeting his gaze, during an audience Saturday aimed at offering solidarity to people living with the condition.

The pope urged governments and institutions to respond to the needs of people with autism to help break “the isolation and, in many cases also the stigma” associated with the disorders, which are characterized by varying levels of social impairment and communication difficulties.

“It is necessary the commitment of everyone, in order to promote encounters and solidarity, in a concrete action of support and renewed promotion of hope,” the pontiff said.

After offering a prayer, Francis greeting the young children and teens with autism and their families, kissing the children and cupping their faces in his hands as he circulated the auditorium at the Vatican. Some appeared to avoid the pope’s eyes, while one teen whom the pope had greeted followed the pontiff and gave him another hug from behind.

Families of children affected with autism were touched by the pope’s words.

“It was an explosion of emotions,” said Maria Cristina Fiordi, a mother of a child with autism. “For us, we are parents of a child affected with autism, this meeting was very important. It was as an outstretched hand through a problem that is very often not considered in the right way.”

Franco Di Vincenzo, another parent of a child with autism, said he took strength from the pope’s call not to hide, “that we should live with this problem in serenity.”

The audience was attended by some 7,000 people, including health care workers who had international conference on autism hosted by the Vatican’s health care office this week.

While autism is increasingly being diagnosed in places like the United States, where about 1 in 68 children are said to be on the spectrum, it is still largely unknown and undiagnosed elsewhere, including in the Vatican’s own backyard of Italy, according to Dr. Stefano Vicari, head of pediatric neuropsychiatry at the Vatican-owned Bambin Gesu hospital in Rome.

NPR: How Hema Ramaswamy Found Healing Through Traditional Indian Dance

Jewish girls go through the bat mitzvah, 15-year-old Latinas celebrate the quinceanera. And for generations of Indian-American girls, the culmination of years of studying classical Indian dance is a lavish solo performance before a crowd of hundreds. Reporter Arun Venugopal of member station WNYC attended what may have been the first such performance by a woman with Down syndrome.

An arangetram, which literally means “ascending the stage,” is a major accomplishment that takes years of preparation. This moment, when a student of dance or music asserts her artistic independence, usually happens in the teen years. Ramaswamy is 23.

Ramaswamy, who has Down syndrome, originally began dancing for health reasons. “But then it became part of her, and she really loves and enjoys it, and it took her 13 years with a lot of challenges, midway, to complete this,” explained her father, Ram. “And now today is a perfect day for her — her graduating in this art.”

She was able to achieve this despite her diagnosis and despite two major surgeries for a dangerous leak of cerebrospinal fluid. Her father said dance has strengthened Ramaswamy’s muscles and given her fine motor skills she simply didn’t have before.

“I feel so happy in dancing,” she beams, surrounded by a flurry of doting aunties while preparing for her performance.

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CNN: How deep brain stimulation could unlock secrets of Tourette’s

“Sitting in class, second grade, teachers would put me outside the hallway because I had been ticking so loud I was a ‘distraction,'” recalled 25-year-old Amber Comfort. “Teachers would walk by me back and forth and say ‘you’d better stop that before you get into my class next year.’ Things that were just completely obscene, that you would never expect the world to be, and I had to deal with on a daily basis.”

From the age of five, Comfort has suffered from Tourette’s syndrome, a neurological disorder that causes her to make involuntary movements and loud noises, known as tics.

For almost 20 years, the condition has shaped every moment of her life. “I don’t remember any parts of ever being tic free,” she said. “There’s not a day that’s gone by that I don’t remember moving or making noise when I couldn’t help it.”

But she has not let Tourette’s dictate how she lives. Comfort graduated from high school with honors and was even accepted to college on full scholarship. But her uncontrollable outbursts have made it hard to continue her education or even hold down a steady job.

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