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…)

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 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…)

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…)

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…)

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…)

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…)

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…)

By Mark Joseph Stern, Slate

On Tuesday, the Supreme Court struck down Texas’ test for determining which inmates are intellectually disabled and therefore constitutionally protected from capital punishment. Texas’ use of outdated and unscientific “medical guidance” to gauge “intellectual functioning,” the majority held, violated the Eighth Amendment’s ban on “cruel and unusual punishments.” The 5–3 decision in Moore v. Texas marks the court’s latest attempt to prevent states from justifying the execution of disabled inmates using arbitrary or capricious standards. (more…)

By Anya Kamenetz, NPR – March 22, 2017

School districts must provide students with disabilities the chance to make meaningful, “appropriately ambitious” progress, the Supreme Court said today in an 8-0 ruling.

The decision in Endrew F. v. Douglas County School District could have far-reaching implications for the 6.5 million students with disabilities in the United States.

The case centered on a child with autism and attention deficit disorder whose parents removed him from public school in fifth grade. He went on to make better progress in a private school. His parents argued that the individualized education plan, or IEP, provided by the public school was inadequate, and they sued to compel the school district to pay his private school tuition. (more…)