Developmentally Disabled and Going to College

August 3, 2017

By Kyle Spencer – August 3, 2017

Half a dozen students, some in Syracuse University T-shirts, sat around a conference table joking about appropriate job interview outfits. No bathing suits, pajamas or Halloween costumes. Added their instructor, not joking: “No tank tops.”

Then Brianna Shults, leading the workshop with a kindhearted but no-nonsense approach, launched into the Q. and A. section. “So if I identify my interview outfit, should I wear it to bed the night before so I’m all dressed and ready?”

“No!” the group responded in unison.

“And before you put your clothes on, what’s the most important step?”

“Shower!” a few called out.

Ms. Shults, an internship and employment coordinator, closed the conversation with a sartorial tip that experience has taught her needs mentioning: “No dirty clothes!”

Why not? Meghan Muscatello piped in: “Because then you’d be smelly.” The room erupted in laughter. “And if you have a cat or a dog, make sure you leave it hanging so they don’t get it all hairy.” (more…)

Doctors With Disabilities: Why They’re Important

July 12, 2017

By Dhruv Khullar – July 11, 2017

Growing up, my sister never let our family get a blue “handicapped” placard for the car.

Born three months prematurely with cerebral palsy, she uses forearm crutches to get around. But she’d rather walk half a mile across a mall’s parking lot than take the reserved spot next to the entrance. (I found this particularly exasperating during the holiday season when a ready parking spot is more precious than the presents inside.)

But the prospect of less stigma and greater support for people with disabilities was a central reason my family immigrated to the United States. My sister was born the same year the Americans with Disabilities Act (A.D.A.) was passed — a law that reaffirmed America’s moral and practical commitment to equality.

More than 20 percent of Americans — nearly 57 million people — live with a disability, including 8 percent of children and 10 percent of non-elderly adults. And while the medical profession is devoted to caring for the ill, often it doesn’t do enough to meet the needs of the disabled. (more…)

State’s Woes Shouldn’t Be Zoe Benjamin’s, A Young Woman With Disabilities

July 7, 2017

By Susan Campbell, Contact Reporter

Numbers can’t begin to tell the story of Zoe Benjamin, but here goes:

330 — Last month, Zoe, 21, of New Britain was among 330 Connecticut adults with intellectual disabilities who graduated from school. In addition to her intellectual challenges, she has autism, cerebral palsy and a seizure disorder, though a careful combination of diet and medication has kept the latter at bay for nearly seven years.

6 — On a scale used by the state Department of Developmental Services to determine a client’s level of need, Zoe ranks a 6. The scale goes to 8, the clients with the highest needs.

2,570 — Zoe is among some 2,570 state residents who rank a 6. She cannot be left alone. She has no sense of danger, and she has a high pain threshold. She is not verbal — that is, she makes noises, but she does not speak. She cannot play board games. She can’t sit still to have her mother read to her. She is not toilet trained, though her family is hopeful. She takes maybe 15 pills a day. (more…)

What’s at Stake

June 28, 2017

As lawmakers debate major changes to the federal health law, it is important to understand what’s at stake in Connecticut. The Connecticut Health Foundation commissioned the Urban Institute to model the impact of the Affordable Care Act (ACA) on Connecticut, with a focus on state residents who might lack health care coverage without it.

“Our goal is for decisions to be made with good data and an understanding of the implications on people’s lives,” said Patricia Baker, president and CEO of the Connecticut Health Foundation. “We commissioned this analysis to document what is at stake as lawmakers consider significant changes to the health care system. We hope this measure of the current status of coverage in Connecticut provides a baseline on which to measure the impact of future reforms.” (more…)

The Senate GOP Hid the Meanest Things Very Deeply in its Obamacare Repeal Bill

June 23, 2017

The Affordable Care Act repeal bill unveiled Thursday by Senate Republicans has aptly drawn universal scorn from healthcare experts, hospital and physician groups and advocates for patients and the needy. That’s because the bill is a poorly-disguised massive tax cut for the wealthy, paid for by cutting Medicaid — which serves the middle class and the poor — to the bone.

Yet some of the measure’s most egregious, harshest provisions are well-disguised. They’re hidden deep in its underbrush or in the maze of legislative verbiage. We’ve ferreted out some of them and present them here in all their malevolent glory. In this effort we’ve built on ace detective work by Adrianna McIntyre, Nicholas Bagley of the University of Michigan, David Anderson of Duke University and balloon-juice.com, Andy Slavitt, the former head of Medicare and Medicaid in the Obama administration, and others. (more…)

Child CEO Helping Disabled

May 31, 2017

When 12-year-old Alexander Knoll saw a man in a wheelchair struggling to open a door, he began thinking of how he could help. Now, he’s designed the ‘Ability App’ to help. (more…)

Apple’s Short Films on Accessible Tech

May 17, 2017

There’s something undeniably special in the way Meera Phillips looks at you when you speak. It’s as if your words are the only words that will ever matter, whether you’re talking about something silly or something serious.

The 15-year-old knows the value of hearing what people say. That’s because she’s used to not being heard.

Meera is nonverbal, living with a rare condition called schizencephaly that impacts her ability to speak. But with the help of her iPad and text-to-speech technology, she can make her thoughts and opinions known — and she sure does. From her love of Katy Perry to her passion for soccer, Meera will let you know exactly what’s on her mind. All it takes is a few taps of her tablet, and with a specialized app stringing letters into words, and words into phrases, her thoughts are played out loud. (more…)

House Health Bill

May 5, 2017

By Erica L. Green, New York Times – May 3, 2017

WASHINGTON — While House Republicans lined up votes Wednesday for a Thursday showdown over their bill to repeal the Affordable Care Act, Vickie Glenn sat in her Murphysboro, Ill., office and prayed for it to fail.

Ms. Glenn, a Medicaid coordinator for Tri-County Special Education, an Illinois cooperative that helps more than 20 school districts deliver special education services to students, was worried about an issue that few in Congress were discussing: how the new American Health Care Act, with its deep cuts to Medicaid, would affect her 2,500 students.

With all the sweeping changes the Republican bill would impose, little attention has been paid to its potential impact on education. School districts rely on Medicaid, the federal health care program for the poor, to provide costly services to millions of students with disabilities across the country. For nearly 30 years, Medicaid has helped school systems cover costs for special education services and equipment, from physical therapists to feeding tubes. The money is also used to provide preventive care, such as vision and hearing screenings, for other Medicaid-eligible children. (more…)

Special Ed School Vouchers May Come With Hidden Costs

April 12, 2017

By Dana Goldstein, New York Times

For many parents with disabled children in public school systems, the lure of the private school voucher is strong.

Vouchers for special needs students have been endorsed by the Trump administration, and they are often heavily promoted by state education departments and by private schools, which rely on them for tuition dollars. So for families that feel as if they are sinking amid academic struggles and behavioral meltdowns, they may seem like a life raft. And often they are.

But there’s a catch. By accepting the vouchers, families may be unknowingly giving up their rights to the very help they were hoping to gain. The government is still footing the bill, but when students use vouchers to get into private school, they lose most of the protections of the federal Individuals With Disabilities Education Act. (more…)

The Twenty-Something Free Fall – Young Adults With Autism Face Many New Expectations and Challenges With None of the Support That is Available During High School

April 3, 2017

By Deborah Rudacille, Spectrum News – March 29, 2017

Isaac Law spends most of his time on his computer, watching movies on Netflix, poring through Facebook posts or working on his latest project, a web comic called “Aimless” about two friends named Ike and Lexis who leave Earth to join a band of space pirates.

Law is 24, but he neither has a job nor attends classes. He briefly worked as a volunteer, stocking shelves in a comic book store, but that didn’t work out. “It was a very disorganized place,” he says. He also tried attending art classes. That didn’t pan out either. “I have massive authority problems,” he says.

In many ways, Law sounds like a stereotypical millennial — unwilling to work a dull job to pay the bills, and preferring to spend time on his creative interests. But Law’s path to an adult role and responsibilities is complicated by the fact that he has autism and bipolar disorder. (more…)