Teen Goes From Special Ed To Valedictorian

For Chance Mair, sometimes emotions are hard to express.

And it was certainly an emotional night in suburban Seattle at Marysville Arts and Technology High School’s graduation earlier this week, where the students filed into the auditorium in black gowns and royal-blue stoles.

Not only was Mair graduating with the 50 seniors in his class, he was the class valedictorian. And he would be giving the valedictorian address, a momentous occasion for a student who was diagnosed with Asperger’s syndrome at an early age.

Mair had never told most of his classmates he has Asperger’s. Never told them he had started his schooling in a special education classroom, or that he received social therapy treatment when he was younger.

“It’s one of those things that for the longest time I didn’t want to tell people,” he said earlier in the day. “But now that I’m graduating, I don’t want to hold it back. I want people to know me for who I really am.”

Growing up in Marysville, Wash. Mair spent his childhood learning how to overcome sensory struggles that come naturally to other children.

Having Asperger’s meant he didn’t talk much, and he had difficulties understanding the nuances in body language. He was overly sensitive to loud noises and strong flavors. His parents recount stories where he would struggle to tell his peers he wanted to play with them, standing quietly by their side.

“I can know that I need to say something and I can feel the confidence to say it when I’m playing it out,” he said. “But then when I get to that step where I actually have to do it, like the execution, that’s when I tense up and get really nervous, really scared.

“Sometimes it’s not even a shyness, sometimes it’s like a fear, a fear of socialness.”

His parents knew his success depended on finding a place where he could build his social skills — and have fun doing it, too.

One way he did that was through bowling. He became fascinated with the sport when he was about 5 years old, playing with different teams in bowling alleys around the Marysville area.

“Diversity is one of the reasons I like it. There’s no one kind of person, there’s no one way you can bowl,” he said. “There are so many possibilities, I guess.” Continue reading Teen Goes From Special Ed To Valedictorian

One woman’s fight to improve mental health care in China

In 1985, Meng Weina set up China’s first private special needs school in the southern city of Guangzhou.

As a single mother she was motivated to help those who are often overlooked by the country’s health care system and stigmatized by society.

From her first center in Guangzhou, Weina now has Hui Ling operations in a dozen cities across China providing a range of services, from kindergartens and primary schools to youth workshops and adult residential homes.

The expansion of the donation-funded NGO shows not just the success of the Weina’s vision but the desperate need for mental health care provision in China.

“We estimate that only 10% of people with intellectual disabilities in China are receiving some kind of care or help,” said Weina.

According to a 2009 study published in British medical journal The Lancet, around 173 million Chinese suffer from a mental disorder. However there are only 20,000 psychiatrists, equaling 1.5 for each 100,000 people, or a tenth of the ratio in the United States.

Mental health legislation

Last year saw the introduction of China’s first mental health legislation, which took a reported 27 years to pass.

Among the changes from the law are new financing initiatives for mental health services and training for primary care-givers. Perhaps the most significant was a new set of rights for patients, including not being hospitalized against their will.

Negative perceptions of those with metal health problems are often portrayed in the media in China; they are either victims or perpetrators of violence.

Weina knows that each individual that comes to a Hui Ling center has their own set of needs and unique personality, and helping bring out their best encourages her to keep working.

“I wanted to do something to make my life worth while,” said Weina.

“When I see the smiles on their faces, when I see that these adults are truly happy to be at Hui Ling, that for me is the happiest moment.”

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NYT: Martin Sheets, Who Shone at the Special Olympics, Dies at 62

Martin Sheets, who became a face of the Special Olympics, winning more than 250 medals competing for more than 40 years in its events for people with intellectual disabilities, died on Thursday in Greensboro, N.C. He was 62.

He had dementia, his family said.

Mr. Sheets, born with Down syndrome, competed in golf, swimming, Alpine skiing, tennis and powerlifting at the Special Olympics, his participation in the movement going back to its first international summer games, at Chicago’s Soldier Field in 1968.

He became ill after arriving there and was unable to compete, but at a banquet concluding the event, Eunice Kennedy Shriver, the founder of the Special Olympics, having learned of his disappointment, walked over to his table.

“I understand you trained to come to the games but you got sick,” she said. “Well, Marty, for your guts and your effort, I want you to have a gold medal, too. Here you go. Marty Sheets, the winner of the special gold medal for bravery.”

She draped it around his neck. Continue reading NYT: Martin Sheets, Who Shone at the Special Olympics, Dies at 62

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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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: 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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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: 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