WAMU: How A Blind Maryland Boy Defines His Life With His Music, Not His Disability

If you ask anyone who attended the 22nd annual Fiddler’s Convention in Berlin, Maryland, this past September, the moment they likely remember the most is when singer/songwriter Frankie Moran was strumming his guitar as his 12 year-old son Cole played the harmonica.

Their performance brought hundreds of people to their feet and many others to tears. And it wowed the judges enough to earn a 2nd place prize.

Cole waved to the crowd as he left the stage, but he couldn’t see the joy his music had brought the audience. That’s because Cole Moran was born blind, and was soon diagnosed with Charge syndrome. It’s a rare pattern of birth defects that can cause heart and breathing problems, along with a range of other medical conditions.

“He has cognitive delays”, says his dad Frankie, “So he’s on a much slower learning level. He’s got apraxia, so he didn’t start speaking until he was about 5. He has one kidney, and he has early on-set scoliosis.”

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The Arc: Conversation Guide and Pathways to Justice™ Video

This easy-to-use tool can be used to inform criminal justice professionals – law enforcement, victim service providers and attorneys – about the need for effective disability-related training in your state or community!

NCCJD’s new “Pathways to Justice™” video highlights challenges faced by people with intellectual and developmental disabilities in the criminal justice system. This powerful tool educates criminal justice professionals, including law enforcement, victim advocates, legal professionals and others in the criminal justice system about cracks in the system that can have devastating effects. Only 4 minutes long, it’s a great conversation starter to use with local police departments, victim advocacy agencies, prosecutor’s and public defender’s offices and others to introduce the topic and explain why effective, ongoing training is needed.

Disability Scoop: Doctors Often Skip Protocols For Antipsychotics, Study Finds

As an increasing number of kids are prescribed powerful antipsychotics, a new study finds that many doctors are deviating from established medical guidelines when they dole out the scripts.

In nearly half of cases, physicians failed to conduct lab tests to measure cholesterol and blood-glucose levels in patients before and after they began taking antipsychotics, according to findings published this month in the journal Pediatrics.

Such lab tests are recommended to mitigate the elevated risk of conditions like high cholesterol and diabetes associated with such medications, researchers said.

Nonetheless, the study found that physicians were generally prescribing antipsychotics to the right patients. In 92 percent of cases, doctors were using the drugs to address situations where they were warranted, most commonly as a secondary treatment for aggression or mood instability.

For the study, researchers sent surveys to every physician in Vermont who prescribed antipsychotics to children covered by Medicaid between July and October 2012. Ultimately, 147 of the doctors — who accounted for prescriptions for 647 patients — responded to questions about their prescribing habits.

The findings suggest that more needs to be done to ensure that doctors follow established protocols when they prescribe antipsychotics, researchers said. Specifically, better training, greater sharing of records and use of electronic medical records to remind providers about blood work could help, they said.

“I’m not anti-antipsychotics; I just want to make sure they’re used very carefully,” said David Rettew of the University of Vermont who led the study. “These findings could help us design a game plan for measures to improve best-practice prescribing.”

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Online Bazaar Raises Funds for L’Arche International

As part of an international federation of 147 communities in 35 countries, L’Arche Greater Washington, D.C. is committed to building awareness about and raise funds for L’Arche communities in developing countries. These communities receive little or no funding from their governments, often leaving them struggling to pay for basic necessities like food, housing, medicine, and assistant salaries.

According to L’Arche International’s web site, “Solidarity means to network with other international organizations, to contribute to conferences and public forums in order to influence society to bridge the gap between a society that neglects its weakest members and one that invites them to actively participate in public life.”

HuffPost: Dear Hiring Manager: All the Disability-Related Skills I Can’t Put on My Resume

Dear Hiring Manager,

By now, you’ve probably skimmed over my meticulously-worded resume, and maybe you’ve even made up your mind as to whether I’m as qualified as the nearly identical resumes of my fellow recent graduates. You may have even Googled me and seen the many blogs I have written about my disability and have formed your opinion on them. As I have been told by many human resources professionals, disability is a subject that can scare many off because of the perception of weakness, inefficiency and need. However, I could create a completely different application package including all of my disability and chronic illness-related skills and accomplishments, one that paints a far more complete picture of my potential as an employee. So, without further ado, here are my disability-related job skills, in cover letter form.

As a seven-year Crohnie (Crohn’s Disease patient) and proud member of the disability community, I am used to upholding my responsibilities in a fast-paced and challenging environment. From the time I was diagnosed in high school, I was intent on ensuring that my medical issues did not get in the way of my ambitions, and even completed my academic courses around the time of my diagnosis while completely bedridden. I was able to graduate from college a year early, Phi Beta Kappa and summa cum laude, while adapting to a rapidly changing medical situation, including hospitalization for an intestinal blockage during my summer college courses. I am used to operating under pressure, and have gained experience with remembering complicated information while under a number of prescription pain medications. Despite the need for these medications at the time, I completed my coursework ahead of schedule while working part-time and completing three internships. I never let my medical situation hinder my determination to complete my work, once tottering to a class two hours after a minor surgical procedure.

Organization is one of my greatest strengths, and in 2014 alone, I was able to successfully schedule approximately two doctors’ appointments a week for five months (most after working hours) while working full-time, coordinating among medical imaging facilities and various specialists and organizing each appointment in a color-coded calendar. This organization and the coordination of my medical team led to the discovery of an infection, and although this was a difficult hurdle to overcome due to the treatments and pain, I upheld my duties at my job and never used my medical situation as an excuse to do less. My other skills include digesting complicated information, including possible treatment routes and unfamiliar medical conditions. Clear communication skills have been essential so that I can advocate for myself when I disagree with a proposed treatment route or procedure. I also have ample experience with multitasking by writing concise correspondence, conducting research and scheduling appointments while receiving IV treatments.

Most importantly, I want these skills to reflect that my disability does not define my usefulness, and my history with chronic illness should only be used to strengthen my accomplishments. Very often, people with disabilities are written off because employers are unsure as to whether they will be able to keep up with the work successfully. A person without a disability is not held up to this same standard of having to prove himself or herself, while a person with a disability is asked to repeatedly prove that their disability will not slow them down. My entire life since the age of 15 has shown that my complicated medical history has never slowed me down, and I am proud to say that I have achieved everything on my resume while dealing with my medical issues. The existence of my Crohn’s Disease only bolsters my accomplishments in my eyes, and it should never be used to question whether I am “less than able” to complete the job.

Dear Hiring Manager, I am not my disability, but my disability is a part of me. It causes complications in my life, but the ways in which I have overcome those obstacles should carry more weight than the obstacles themselves. I have been determined and passionate as I have challenged myself to strive for my ambitions, and those are the qualities I can offer you. If you want a determined, passionate, striving and successful individual, please consider hiring me, or any other applicant with a disability.

Sincerely,

Sarah Blahovec

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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