Developmentally Disabled, and Going to College

By KYLE SPENCER – AUG. 3, 2017

Meghan Muscatello
Meghan Muscatello interning in the offices of the Institute for Veterans and Military Families as part of the InclusiveU program at Syracuse University. Credit Heather Ainsworth for The New York Times

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.”

This might sound like a typical lesson in the age of anything-goes office wear, but these millennials aren’t so typical. Ms. Muscatello and her peers belong to a pioneering group of students with significant intellectual disabilities who are enrolled in Syracuse’s InclusiveU.

The students — about 60 are expected this fall — have various degrees of disability, often with related developmental disorders. One communicates through a picture board and an iPad; a helper supports her arm as she taps out words. Another, a movie buff who wrote a play for his theater class, has Asperger’s syndrome. A sports enthusiast who interned this past spring with the Syracuse Orange men’s basketball team has Down syndrome.

During the first three years, the students choose “majors” and audit five to six college classes that align with their interests. They complete homework and take tests, ungraded, with the help of note takers, who are supplied by the university to sit with them in class. Popular majors: disability studies, sport management and food studies. Favorite classes: first aid, “Animals and Society” and “Peoples and Cultures of the World.” The students also take a spattering of electives, like hip-hop dance, jewelry-making and photography. For their fourth year, they intern on campus. All the while, they attend workshops — on email etiquette, workplace chitchat and résumé writing — and spend time with student volunteers at trampoline parks, basketball games and pizza parlors. The goal: to become employable.

Fifty years ago, young people with intellectual disabilities were often institutionalized or kept home, out of the public eye. Thanks to 1975 legislation now called the Individuals With Disabilities Education Act, more than 90 percent of them now go to public schools with mainstream students.

And that, experts say, has altered expectations around what they ought to achieve.

Brian Skotko, the co-director of the Down syndrome program at Massachusetts General Hospital, sees 250 patients with the condition a year. He makes this observation: “Parents with newborn babies now want to know, ‘What are the possibilities for school? What are the college and independent living opportunities?’ ”

Bud Buckout
Bud Buckout, director of InclusiveU, helping a student in an internship preparation class. Credit Heather Ainsworth for The New York Times

The hope for their children is that they can learn to shoulder jobs and live quality lives.

Today, there are some 265 work-readiness college programs for students like the ones at InclusiveU, according to Think College, a federally funded coordinating center at the University of Massachusetts, Boston. That’s a big leap from 2004, when there were just 25. Unlike programs for high-functioning students on the autism spectrum, these award certificates, not degrees.

What the students want upon graduation are good jobs, not short-term gigs restocking shelves or handing out fliers on street corners but employment that relates to their interests and plays to their strengths. Therapists, economists and philosophers have long equated happy, fulfilling lives with meaningful work, no matter one’s intellectual ability.

Some research indicates that college helps. A 2015 survey by Think College of some 900 intellectually disabled students found that those who spent most of their time in traditional classes, soaking up campus culture and fine-tuning their social skills, had better job rates than those who spent most of their time in specialized classes. The length of time a student spent in a program also increased their chances of employment.

But the same survey found that only 40 percent of students exiting programs in 2015 were in paid jobs within 90 days of leaving. That’s a lot better than the 7 percent employment rate for similarly disabled adults within the general population, as reported in a 2011 study. But it’s still a dispiriting number.

Syracuse University, which has offered a loosely monitored class-auditing program since 2009, has struggled to get its students paid positions. It has not tracked employment, but informal interviews with 30 certificate recipients indicated that only about a third were employed for at least two days a week this past spring, making at least a minimum wage. One graduate had landed a position in the campus parking permit office after an internship there. Not so lucky was a 2012 graduate who got a job wearing a billboard sign outside a pizza chain. He promptly quit. Another did volunteer work checking patients in at a hospice.

To improve outcomes, the university overhauled the program in 2014, rebranding it as InclusiveU. And with a $2 million federal grant, Ms. Shults was hired to design the internship year and workshop curriculum, which replaced a fourth year that had been purely academic. The first class will graduate in 2019, but already Cate Weir, Think College’s program director, cites InclusiveU as a model.

Syracuse has a longstanding reputation for commitment to disability advocacy, starting in 1946 when it opened a special education research department and began attracting top talent in the field. In recent years, the university has done high-profile work in communication methods for individuals with disabilities, and now has 10 disability-related centers. One is the Lawrence B. Taishoff Center for Inclusive Higher Education, which houses InclusiveU.

Beth A. Myers, the director of the Taishoff Center, said that students in the newly revised program begin brainstorming their career plans when they arrive as freshmen, and are guided to think deeply about their interests, their strengths and their weaknesses.

The challenge is striking an honest balance between being too optimistic and not stretching them enough. “Low expectations is a serious issue with this population,” said Bud Buckhout, who oversees the program. “But you don’t want to overwhelm people, either.”

For some, striking that balance has led to disappointment. Bob Pangborn, a 22-year-old dramaturge with autism, spent his teens performing in community theater. At Syracuse he learned that acting was an unreliable profession. He was encouraged to consider something more practical, like ushering at a movie theater.

The conversations led Kaitlyn O’Reilly, who was born with a rare chromosome abnormality, to take a disability studies class popular among sociology majors. Her end-of-semester assignment was an evaluation of campus crosswalks unfriendly to visually impaired students. She and her note taker had created a map showing where to put raised street markings and audio boxes.

The room was silent as Ms. O’Reilly, who has a speech impairment that can make it difficult to understand her, stood next to a podium and went through the locations on the map, displayed on a whiteboard.

“These ones are good, these ones are bad and these ones are half not O.K., half good,” she said, pointing at green, yellow and red dots on the map — a color-coded grading scale.

After her presentation, her professor wondered if crosswalks deep inside the campus were more problematic than ones in areas popular with visitors. Ms. O’Reilly said yes. Then a student told the class that she herself had noticed how unsafe one of the crosswalks Ms. O’Reilly had mentioned was, even for students who are not impaired. Ms. O’Reilly nodded knowingly. “Yeah, you don’t know where you can walk across the street.”

Ms. O’Reilly, who is in her first year in the program, said the presentation had given her a sense of her own power. “I felt very proud of myself,” she told me. Ms. Shults sees her getting an internship at one of the campus’s disability centers. Ms. O’Reilly says she thinks she’d like to work with children.

Ms. Muscatello, who at 28 is in her final year, knows exactly what kind of career she wants. She envisions herself in an office wearing nice clothes, answering phones, filing papers and having lunch with colleagues.

InclusiveU helped her develop that vision.

With an I.Q. around 65, she finds simple things like work manuals and basic textbooks challenging. Big words confuse her, and her math skills don’t go past third grade. But she is funny and warm, with an easy smile. She likes Harry Potter books, natural disaster movies and her cat. And “I love it here,” she said of the campus.

Ms. Muscatello spent her teens in a special program in high school and then entered a life skills program for students with intellectual disabilities. On completion, she landed a job at a Price Chopper, stocking shelves. At first, she liked unloading jars of applesauce and cans of tomato soup. But eventually the work felt demeaning.

When mayonnaise jars broke or one-pound bags of flour cracked open, it was Ms. Muscatello who was asked to do the cleanup. “I’d go home all covered in flour,” she said. “You could stick me in the oven and bake me like a cake.” She would cut her hands when cleaning up glass. Her mother, a labor and delivery nurse, wanted more-challenging work for her daughter and more respect. “I wanted more of a people job for her.” Ms. Muscatello did, too.

This past year, she participated in three campus internships. In the fall, she interned in the repair shop. The first few days, the program’s job coach shadowed her as she learned how to fill out work order forms when complaints came in that light switches or elevators weren’t working. Once on her own, Ms. Muscatello found the work manageable but boring. For her second job, she worked in the day care center reading to preschoolers, helping them with yoga poses and, once, calming them when a raccoon got stuck in the playground. But she found the work exhausting.

Olivia Mirabello and Max Zukin
Olivia Mirabello and Max Zukin in a food and nutrition course taught by Gina Frisina in New York Institute of Technology’s Vocational Independence Program. Credit Alexander Berg

She found her sweet spot in her third internship, working as an assistant in the quiet, carpeted offices of the Institute for Veterans and Military Families. The hope was that maybe she could stay on after the internship.

I first met Ms. Muscatello in the office break room at the institute. She was learning how to deliver mail and deal with the stubborn paper shredder, and trying to remember who was whose assistant.

When an officemate teased her that the boxes she was delivering might be too heavy for her, she insisted: “I’m capable of carrying some of the heavy boxes.” She does not want to be underestimated.

One spring morning on the North Shore of Long Island, dozens of eager parents, some from as far away as Illinois, meandered around the tree-lined campus of New York Institute of Technology, which houses the Vocational Independence Program, a three-year residential program with about 45 students. Staff members stood behind folding tables inside a sprawling lobby to hand out glossy promotional material, while parents nibbled on muffins and bagels. More than 1,000 students have enrolled since its inception in 1987.

Once the group had settled in the auditorium, Paul Cavanagh, the senior director, told parents about the 3:1 student-to-staff ratio, the extensive job training (traditional college classes, internships at nearby hotels and restaurants) and life skills classes (banking, budgeting, cooking, apartment living). But the school has not kept records of postgraduate employment.

Parents took notes. During the questions segment, one parent wanted to know whether there were enough athletic activities. (Yes, baseball and volleyball games are organized by the students.) Was there an I.Q. cutoff? (No.) What is the screen-time policy? (Students manage their own screen use.)

Touring classrooms, computer labs and a coffee house where students hold meetings, talent nights and parties, parents talked about their dreams and concerns. A New Jersey mother of an 18-year-old with a developmental disability thought the time away from home would be good. “For him, not me,” she said woefully.

Many of the parents said they were looking for something new for their sons or daughters: an environment where not everybody catered to their every whim, where they were allowed to stumble a bit and take some risks, which they hoped would allow them to build the kind of resilience necessary for independent lives and fulfilling jobs.

New York Institute of Technology has the priciest of the programs, at $50,730 in tuition a year (plus $12,220 for room and board). The Syracuse program averages around $23,200, depending on what classes a student takes. (It will host its first boarder this fall.) Both fees include the cost of mentors and note takers. Nationally, the average cost without support staff, according to Think College, is $11,000.

Such revenue contributes to the proliferation of work-readiness programs. The growth is also a result of a 2008 rewrite of the Higher Education Opportunity Act, which led to the establishment of Think College. It allowed these students, many without a high school diploma or comparable, to use federal financial aid for the first time if they attend an approved program. Syracuse expects to be able to award financial aid by this fall. (Students in some states can use a special Medicaid fund to pay their expenses. School districts — required by law to support educational opportunities for disabled students until age 21 — also help foot some of the bills.)

A poster on workplace behavior for InclusiveU students. Credit Heather Ainsworth for The New York Times

Some take issue with the programs for supporting what they consider an impractical but prevalent idea — that everyone should go to college — and giving students a false sense of academic accomplishment while costing taxpayers and parents. Instead, they believe these students ought to be funneled into more cost-effective and targeted vocational training programs and apprenticeships.

“If we are going to really help people with significant disabilities, it’s not by pretending they can go to college and do college work,” said James M. Kauffman, a professor emeritus of education at the University of Virginia who has written extensively on special education.

Ms. Weir of Think College says such thinking too narrowly defines how a college education benefits students, ignoring much of the socio-emotional learning that happens for those in their late teens and 20s — with disabilities and without — while clocking time on a campus. Further, she says, just because students don’t get 100 percent of what is taught in a class does not mean they haven’t benefited.

“This isn’t for everybody,” Ms. Weir said. “But it should be a choice. Students with disabilities shouldn’t be told, ‘You can’t have a choice other people have.’ ”

But even as she stridently supports the existence of the programs, Ms. Weir concedes that there are serious challenges. Programs are not accredited, leaving many families more or less in the dark about their quality. For the past few years, a 15-person task force organized by Think College has worked to develop a set of accreditation standards. The report was delivered to Congress last year. Ms. Weir says the next step is to persuade colleges to agree to an accreditation process.

Advocates say that the biggest issue isn’t so much with the programs as with the work force. Many employers worry about the expense and training required when hiring someone with a disability. And low-skilled jobs that might have once been appropriate for this population are disappearing in our increasingly tech-centered economy.

Jonathan Lucus, managing director of the Arc, a job-training service that connects companies with applicants who have intellectual and developmental disabilities, says college programs need to do intense outreach with local businesses. “You’ve got to constantly go out there,” he said, “and shake hands and greet people and kiss babies and talk to these employers and say: ‘Look what we are doing. How can we work together?’ ”

Ms. Muscatello’s journey illustrates how hard that can be.

When I went to visit her a second time at her internship, she was sitting quietly behind the front desk dressed in black slacks and golf shirt. She had a laminated cheat sheet on the desk by her side that her job coach, Angela McPheeters, had made for her. It had all the staff names, their job titles and their extensions in large print.

An administrative assistant sat by her side, giving her the day’s assignment: to empty black binders that had been used for a recent conference, remove the tabs, and place them in a box on the floor. Ms. Muscatello also worked the phones. But when she picked up a call for someone in the entrepreneurship office, she got confused and couldn’t say the word. Another time, pressing the buttons gave her trouble. Her supervisor had told her that if she got better with the phones, there was a good chance they’d hire her.

When Ms. McPheeters got wind of this, she sent Ms. Muscatello home to practice with a photocopy of a telephone with the numbers pad on it and her cheat sheet. She spent days on it, after work and on weekends, announcing: “Hi, I.V.M.F. This is Meghan. Can I help you?” She tapped on the paper numbers with her index finger, as if she were transferring the calls.

But when the semester ended, the supervisor said that funding had been cut and they were not going to be able to hire Ms. Muscatello. “I was a little bit disappointed,” she told me.

A few weeks later, in a cap-and-gown ceremony at a chapel on the main quad, this year’s graduates received their certificates. One now has a job doing clerical work in a municipal office. Another has a position as a shop technician at a carpet cleaning company.

As for Ms. Muscatello, she spent weeks eagerly waiting, her résumé, letter of recommendation and interview outfits, free of cat hair, ready to go. Then one morning she was called in for an interview — and aced it. This month she is expected to begin working the front desk at a YMCA. She got her dream job.

Correction: August 3, 2017 
An earlier version of this article referred imprecisely to the Individuals with Disabilities Education Act. In 1975 the legislation was called the Education for All Handicapped Children Act, and was renamed IDEA in 1990.

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Doctors With Disabilities: Why They’re Important

Dr. Gregory Snyder discussing patient cases with colleagues during his rounds at Brigham and Women’s Hospital in Boston

doctor with disability
Dr. Gregory Snyder discussing patient cases with colleagues during his rounds at Brigham and Women’s Hospital in Boston. He uses a wheelchair and says that he’s sometimes mistaken for a patient while working: “It reminds us that at some point we’ll all be patients. And perhaps, when we least expect it.”

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 nonelderly 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.

People with disabilities are less likely to receive routine medical care, including cancer screening, flu vaccines and vision and dental exams. They have higher rates of unaddressed cardiovascular risk factors like obesity, smoking and hypertension.

Compared with nondisabled adults on Medicare, disabled people on Medicare are more than twice as likely to forgo care because of the cost, and three times as likely to have difficulty finding a doctor who can accommodate their needs.

The typical response to these types of deficiencies is a call for greater attention to the issue in medical school curriculums. That may be part of the solution. But I’ve sat through enough online modules and uninspired lectures to recognize their limited utility.

Far more powerful for medical trainees and the profession would be having more students, colleagues and mentors with disabilities, who understand how a particular impairment does — or doesn’t — affect daily life.

It’s Not Even the Disability Itself

Often the barrier to medical care isn’t the disability but a health system poorly equipped to handle it: a lack of transportation, accessible medical equipment and safe methods of transfer. These structural problems can be compounded by cultural ones: stigma, communication challenges and inadequate training for clinicians and staff.

In one recent study, researchers called more than 250 specialty practices to make an appointment for a fictional patient they said was partly paralyzed because of a stroke and could not transfer herself from a wheelchair to the exam table. More than 20 percent of offices refused to book an appointment, saying that their building was inaccessible to wheelchairs, they didn’t have height-adjustable exam tables, or their staff wasn’t trained to move the patient. Many practices that did agree to make the appointment admitted they didn’t have the necessary equipment to move the patient, and might need to skip parts of the physical exam.

More worrisome is recent evidence that patients with disabilities don’t always receive the same treatments for the same medical conditions. One study compared breast cancer treatment for women with and without disabilities. Researchers found that women with disabilities were much less likely to undergo breast-conserving surgery than full mastectomy — and those who did receive breast-conserving surgery were less likely to get radiation afterward, which is needed to eradicate residual cancer cells. Over all, they were about 30 percent more likely to die of their cancer.

Disabled individuals are more likely to feel that their doctors don’t listen to them, treat them with respect or explain decisions properly. Doctors often make false assumptions about the personal lives of patients with disabilities. For example, women who have difficulty walking are much less likely to be asked about contraception or receive cervical cancer screening, in part because doctors assume they’re not sexually active. Disabled patients are also about 20 percent less likely to be counseled to stop smoking during their annual checkups.

doctor with patient
Had he not been injured, Dr. Snyder said, “I would have been this six-foot-tall, blond-haired, blue-eyed Caucasian doctor standing at the foot of the bed in a white coat.” He added: “Now I’m a guy in a wheelchair sitting right next to my patients. They know I’ve been in that bed just like they have. And I think that means something.” KAYANA SZYMCZAK FOR THE NEW YORK TIMES

Doctors With Disabilities Are Changing the Profession

More than 20 percent of the American population lives with a disability, but as few as 2 percent of practicing physicians do — and the vast majority acquire them after completing training. Few people with disabilities are admitted to medical school: Medical students with disabilities also have higher attrition rates than nondisabled students, partly because, despite the A.D.A., they don’t always receive the support they need.

study published last year examined the “technical standards” — expected cognitive and physical abilities — that medical schools require for admission. (Schools are free to determine these standards as they see fit in accordance with the A.D.A.) Researchers found that while most medical schools had such statements listed on their websites, many statements were difficult to find, and only one-third of schools explicitly said they would support accommodations for disabilities. More than 60 percent lacked information on who would be responsible for providing accommodations, the student or the school.

Increasingly, though, doctors with disabilities are changing the profession. Dr. C. Lee Cohen, a resident at Massachusetts General Hospital, has a condition that resulted in partial hearing loss in both ears. She uses an amplified stethoscope to listen to patients’ hearts and lungs, and previously used an FM transmitter device to more clearly hear lectures in school.

“I’m better at communicating with older patients who have hearing loss,” Dr. Cohen said. “From my experience, I know that when you can’t hear well, your brain parses words and syllables in a certain way. Instead of asking people to repeat themselves, I ask them to rephrase themselves. So when my patients are hard of hearing, I know which sounds they’ll have trouble with. I rephrase so they can understand.”

Dr. Gregory Snyder, a physician at Brigham and Women’s Hospital in Boston, has paralysis in his legs after a spinal cord injury during medical school. He uses a wheelchair and says that he’s sometimes mistaken for a patient while working. But that’s not necessarily a bad thing.

“It reminds us that at some point we’ll all be patients,” he said. “And perhaps, when we least expect it.”

Over the course of our lives, most of us will acquire a disability: More than two-thirds of Americans over the age of 80 have a motor, sensory or cognitive impairment.

Dr. Snyder remembers the difficulty of adjusting to life as a patient after his accident, and the long road to recovery. But he says his disability and rehabilitation have fundamentally changed the way he cares for patients — for the better.

“I would have been this six-foot-tall, blond-haired, blue-eyed Caucasian doctor standing at the foot of the bed in a white coat,” he said. “Now I’m a guy in a wheelchair sitting right next to my patients. They know I’ve been in that bed just like they have. And I think that means something.”

There’s good reason to believe a more diverse work force — one that includes doctors with disabilities — would be good for patients and doctors. Patients of various backgrounds tend to feel more comfortable with physicians like them, and that’s true for people with disabilities as well.

Having mentors and colleagues with disabilities fosters understanding of different abilities and perspectives, and creates an environment that challenges negative biases about those groups. My sister, as just one example, was the beneficiary of policies (the A.D.A.) and a community that have allowed her to thrive: She recently graduated from medical school and is now training as a radiation oncologist.

Dhruv Khullar, M.D., M.P.P., is a physician at NewYork-Presbyterian Hospital and a researcher at the Weill Cornell Department of Healthcare Policy and Research. Follow him on Twitter at: @DhruvKhullar.

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State’s Woes Shouldn’t Be Zoe Benjamin’s

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

Zoe BenjaminBy 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.

130 — Adult diapers cost roughly $130 a month, though Zoe's family recently decided to have a prescription written for them, which will give them a small financial break.

22,000 — According to Shannon Jacovino, The Arc of Connecticut's director of advocacy and public policy, the average cost of services for people like Zoe is about $22,000 a year. That's average. Zoe's support system costs closer to $40,000, according to her mother, Adrienne.

Very few — That, frankly, is the number of options her family faces. The state doesn't have a budget, and there is no money for programs for new graduates for the next two years. Connecticut's Gov. Dannel P. Malloy has signed an executive order so that he can run the state without a budget, and the rubric he's using is draconian.

This isn't just politics and numbers. It's people, like Zoe. If this were a regular world in a normal time, upon her graduation, she would enter a program with one-on-one caregiving that would help her be as independent as possible. But this is not a regular time. That means a severe reduction in the structure in which she thrives, and an almost assured regression for Zoe. Perhaps there will be acting out. Her mother has a post-tantrum photo that shows a sturdy coffee table in pieces. It's what happens when you balance a state budget on the backs of the state's most vulnerable residents.

Zoe's father, Steven Horowitz, is a Central Connecticut State University associate professor in psychology. Her mother, Adrienne Benjamin, is a clinical social worker. They've been able to adjust their schedules, and include a host of dedicated people, including their 27-year-old son, who works full-time in the New Haven area in the field of acquired brain injury, to provide care. The family is better off financially than some, but there could come a time when someone needs to stay home. In some families, that means going on SNAP, or other entitlement programs, to keep the family afloat.

Adrienne Benjamin is chair of the Governor's Council on Developmental Services and, in February, she testified before the state appropriations committee. She's even taken her daughter along, but she knows how lobbying works. A legislator will hear from her family about the need for services, and then a half-hour later, someone else comes to talk about criminal justice reform, or opioid abuse. And then there are the professional lobbyists who work for the banking industry, or the pharmaceutical companies. Still: "We shouldn't have to fight one another for crumbs," said Adrienne Benjamin.

Especially critical to Zoe is the potential defunding of a crucial program, Community First Choice, a Medicaid program that was offered through the Affordable Care Act and allowed families to hire caregivers. The Horowitz/Benjamin household has been hiring someone for 15 hours a week. Now that school is over, they'll need someone for more like 23 hours a week, which they will have to pay for themselves.

So, one last number:

Countless — The number of nights the family has spent discussing what to do if the DDS day programs ever went away. This is their worst case scenario, but Adrienne Benjamin is quick to deflect pity. They are better off than most, she says. But what do you do with a young woman and her 329 cohorts who are so challenged, and have just been given a hill to climb? And what do you do with the 350 others who graduate next June?

Susan Campbell teaches at the University of New Haven. She is the author of "Dating Jesus: Fundamentalism, Feminism and the American Girl" and "Tempest-Tossed: The Spirit of Isabella Beecher Hooker." Her email address is

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What’s at Stake

What’s at stake: The impact of the Affordable Care Act in Connecticut, by the numbers

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.”

The full report is forthcoming. Here are some of the key findings:

Connecticut’s uninsured rate would be almost twice as high without the Affordable Care Act

  • An estimated 198,000 Connecticut residents under 65 are uninsured this year, but without the health law, it would likely be 81% higher – 359,000.
  • Put another way: For state residents under 65, the uninsured rate is 6.6%. Without the ACA, it would be 12%.

24% of CT residents have pre-existing conditions

Minorities, people without a college education, and workers are disproportionately represented among residents who gained coverage under the ACA

According to the Urban Institute’s modeling, there are roughly 161,000 people who have coverage because of the ACA who would be uninsured without it. (Others covered by the health law’s Medicaid expansion or health insurance marketplace might have other sources of coverage if the ACA didn’t exist.)

Of the approximately 161,000 state residents who are covered because of the ACA:

  • 46% are people of color, including 23% who are Latino, and 14% who are African-American
  • 40% are young adults ages 19-34
  • 62% were not educated beyond high school
  • 81% live in working families, including 68% in families with full-time workers

47% drop in uninsured african americans

People with employer-sponsored insurance have new consumer protections because of the ACA

There are 1.9 million people in Connecticut with employer-sponsored insurance. Although most didn’t gain coverage because of the Affordable Care Act, aspects of their plans changed because of the health law. In particular:

  • Their insurance now covers preventive services with no out-of-pocket costs to patients. This includes check-ups for infants, children and adults; cancer screenings; and contraception.
  • Insurance plans cannot impose annual or lifetime coverage limits for essential health benefits. Before the ACA, insurance plans commonly set dollar limits on how much they would cover, leaving people who faced high medical costs – such as for cancer treatment or after a car accident – with significant financial burdens, often leading to bankruptcy.

People who don’t get coverage through their jobs have additional protections

Approximately 163,000 Connecticut residents buy coverage through the state’s individual market. Under the ACA:

  • People cannot be denied coverage or charged more because they have a pre-existing condition. Before the ACA, many people with such conditions were unable to buy insurance. The Kaiser Family Foundation estimates that 522,000 Connecticut residents under 65 – 24% – have pre-existing conditions that could have left them unable to buy insurance before the ACA.
  • Insurance plans sold on the individual market must cover 10 essential health benefits, including maternity care and mental health and substance abuse treatment. These services were often not covered by plans sold through the individual market before the ACA.
  • Approximately 73,000 people receive federal financial assistance to lower their monthly premiums.

10 essential benefits

People with Medicare receive more coverage and lower costs for medication

Approximately 591,000 Connecticut residents are covered by Medicare. Because of the ACA:

  • They now receive check-ups, cancer screenings, and other preventive services with no out-of-pocket costs.
  • Those with annual prescription drug expenses between $3,700 and $4,950 – the “donut hole” – now receive Medicare payments to cover 60% of the cost of name-brand drugs and 49% of generics. Without the ACA, Medicare beneficiaries would receive no coverage for medication costs in this range.

The ACA cut uncompensated care provided by hospitals, doctors and other providers by more than 60%

  • The Urban Institute’s projections indicate that in 2017, hospitals, physicians, and other health care providers would have delivered more than $1 billion in unreimbursed care to the uninsured without the ACA. Because of the coverage gains that occurred through the ACA, the amount of uncompensated care will be closer to $416 million – 61% less.

60% drop in uncompensated care

The ACA is responsible for more than $1 billion in additional federal funding for Connecticut

  • In 2017, Connecticut is slated to receive $1.16 billion more in Medicaid funding and subsidies for private coverage from the federal government compared to what it would receive for Medicaid without the ACA.
  • This additional funding has allowed Connecticut to spend $40 million less in state dollars on Medicaid than it would have without the ACA, while covering 138,000 more people through the program.
  • Nearly 100 Connecticut organizations – including hospitals, nursing homes, community health centers, and state government – are receiving more than $62 million in federal funds made available through the ACA to help develop new models of delivering care intended to improve outcomes and slow the growth of health care costs.


The Urban Institute’s projections compare actual coverage and costs in 2017 under the ACA to estimates of coverage and costs in 2017 without the ACA. The estimates are based on the Urban Institute’s Health Insurance Policy Simulation Model, which is based primarily on data from the U.S. Census Bureau’s American Community Survey.

A full report with additional data on the ACA’s impact on Connecticut overall and on specific groups is forthcoming.

For more information, please contact Arielle Levin Becker at 860-724-1580 x 16 or

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The Senate GOP hid the meanest things very deeply in its Obamacare repeal bill. We found them

get your hands off our healthcare
Protestors gathered in front of the Capitol on Wednesday as Senate Republicans prepared to unveil their Obamacare repeal bill. (AFP Getty)

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, Andy Slavitt, the former head of Medicare and Medicaid in the Obama administration, and others.

Some of these provisions match those in the House Republicans’ repeal bill passed May 4, and some are even harsher — more “mean,” to use a term President Trump himself applied to the House bill. That bill, according to the Congressional Budget Office, would cost some 23 million Americans their health coverage by 2026. The Senate bill wouldn’t do much better, and might do worse.

—States will have more authority to reimpose lifetime and annual benefit caps and eliminate essential health benefits. This may be the most insidious provision of the repeal bill, and certainly is the most deeply hidden.

The Senate bill will open the door to states forcing people with preexisting conditions … to pay far, far higher costs than everyone else.
— Gene Sperling and Michael Shapiro

It’s buried in changes made to the ACA’s so-called Section 1332 waivers, which are designed to allow states to try innovative approaches to healthcare, especially through their Medicaid programs. Under the ACA, states can only seek waivers under certain conditions. The “innovative” changes can’t lead to fewer people insured, or subject them to higher out-of-pocket expenses.

The Senate bill repeals those limitations — and removes the flexibility of the Secretary of Health and Human Services to approve them. Under the measure, the secretary “must” approve a waiver request as long as it won’t increase the federal deficit. As a result, states would be able to eliminate the essential health benefits that all health plans must provide under the ACA — including hospitalization, prescription coverage, maternity care and substance abuse and mental health treatment. Since only essential health benefits are subject to the ban on lifetime and annual benefit limits, high-cost patients such as cancer victims and sufferers from chronic diseases could permanently lose their benefits early in their treatment.

Would states roll back these protections? By some reckonings, they’d have no choice. The overall impact of the Senate bill would be to shrink the individual health insurance market and leave sicker customers in the insurance pool, says Jeanne Lambrew of the Century Foundation, in part because the measure eliminates the individual mandate that keeps younger and healthier buyers in the market. As a result, she says, insurers will put enormous pressure on state governments to loosen their regulations to lower the insurance companies’ risk.

States would also be authorized to waive rules requiring that almost all customers be charged the same premium. That’s an invitation to preferential pricing that would effectively remove protections for people with preexisting conditions — they could be priced out of the individual market in a return to the dysfunctional system that denied them insurance in the pre-ACA era.

Under the repeal bill, waivers would be in place at least for eight years, compared with five under the ACA. That means that the rollbacks of consumer protections would be inoculated against repeals by new state or federal administrations.

Protection for people with preexisting conditions is destroyed.

Senate Republicans claim in their talking points that the measure protects people with preexisting conditions from being denied coverage or priced out of the market. Don’t believe them. As Gene Sperling, a former economist for the Clinton and Obama administrations, and Michael Shapiro observe, “the Republican plan may not allow insurers to discriminate … through the front door, but they’ve created a backdoor way in.”

The key is that same Secton 1332 waiver provision. If state’s allow insurers to offer plans without those essential health benefits, they’ll offer “skinny” plans that don’t serve the needs of those with serious conditions. Plans that don’t cover cancer drugs or hospitalization, perhaps. Those patients will have no choice but to opt for more comprehensive plans, which will end up with an overabundance of expensive enrollees and therefore much higher premiums.

“The Senate bill will open the door to states forcing people with preexisting conditions into segregated markets that will lead them to pay far, far higher costs than everyone else,” Sperling and Shapiro say. “This bill will bring the country back to a system in which insurance only works for the healthy, and the sick can’t afford the coverage they need.”

Older Americans would get socked with much higher premiums and costs.

The Senate bill changes the ACA’s premium subsidies in ways that severely hurt older customers. The bill expands the permissible range of premiums for older buyers compared to younger from a ratio of 3 to 1 in the ACA to 5 to 1. In other words, older buyers could be charged much more. It reduces subsidies for older buyers in other ways. The ACA’s subsidies are based entirely on income, and are provided to households with income up to 400% of the federal poverty line. That ceiling is $48,240 for an individual.

The Senate bill cuts the maximum income to be eligible for subsidies to 350% of the poverty line — $42,210 for an individual. The measure also pegs subsidies partially to age, with older buyers entitled to smaller subsidies. Under existing law, the most that anyone within 400% of the poverty line can pay for a qualified health plan is 9.5% of their income. Under the Senate bill, buyers age 60 or older within 350% of the poverty line would pay as much as 16.2% of income — and those over 350% of poverty would get no help at all.

In other words, an insurance buyer today earning $48,240 would pay a maximum premium of $4,583; anything over that would be paid by the government. Under the Senate plan, a 60-year-old earning up to $42,210 would pay a maximum premium of $6,838. And anyone earning more than $42,210 would have to pay whatever the insurer charged, with no subsidy.

The biggest tax cut for the rich is retroactive.

As we’ve reported before, the repeal measure delivers an estimated $346 billion in tax cuts over 10 years, all of it going to households with income over $250,000. But the biggest component of the cut — repeal of a 3.8% surcharge on capital gains and dividends for those taxpayers — would be retroactive to the beginning of this year. That turns it into more of a free handout for wealthy people who already had sold securities or collected dividends since Jan. 1.

Even the Wall Street Journal is aghast. “Retroactive tax cuts like this don’t create an incentive and can yield windfall gains for people who already made decisions,” the paper observed. A millionaire who already had booked a $1-million gain on a stock sale, for example, would collect a $38,000 benefit.

This provision in particular is heavily loaded toward the richest of the rich. According to the Tax Policy Center, 90% of the cut goes to the top 1% (those with income of $699,000 or more); they’d get an average tax benefit of about $25,000. And almost two-thirds goes to the top 0.1% (with income exceeding $3.8 million); they’d get an average $165,000.

In fact, all the measure’s tax cuts taken together, valued at about $700 billion over 10 years, would be almost entirely paid for by the bill’s elimination of Medicaid expansion in the 30 states and the District of Columbia that accepted it. Medicaid expansion, which covers households earning 138% of the federal poverty line or less, will cost about $702 billion in that period. There’s no clearer illustration of how the Senate Republican bill transfers wealth from the poor to the rich.

The fight against opioid addiction is crippled.

Opioid addiction has emerged as perhaps the worst public health crisis in America. But as much as 40% of the cost of treatment of addicts has been paid by Medicaid. The harsh cuts in that program imposed by the Senate bill would force more of that expense onto states that simply can’t afford it. Meanwhile, the projected loss of medical coverage by as many as 23 million Americans under repeal will keep many victims of the epidemic from finding treatment.

The Senate measure substitutes a frayed Band-Aid to cover that loss. Despite estimates of as much as $183 billion over 10 years to fight the epidemic and treat its victims — and a request from GOP Sens. Rob Portman of Ohio and Shelley Moore Capito of West Virginia that $45 billion be added to the Senate measure for the purpose — the bill offers only a risible one-year appropriation of $2 billion.

Salaries for health insurance chief executives can go through the roof.

This provision matches one that was buried in the House bill, and is similarly obscured in the Senate version. It removes a limit on the deductibility of CEO pay in the health insurance industry written into the ACA.

Most public companies can’t deduct more than $1 million in pay for their top executives, but there’s a big loophole: “Performance-based” compensation, such as stock options or restricted stock grants, is exempt from the limit. The Affordable Care Act cut the limit on the deductibility for health insurers to $500,000 in pay per executive and eliminated the performance-pay loophole for them entirely. The Senate would repeal that provision, restoring the higher deductibility and the loophole for health insurers.

As we reported earlier this year, according to calculations by the progressive Institute for Policy Studies based on the pay of top executives at the five biggest publicly traded insurers in 2015, the deduction constraint saved taxpayers about $92 million that year. The figure would undoubtedly be higher now: The CEOs alone of the top five health insurers (Aetna, Anthem, Cigna, Humana, and United Health) collected nearly $88 million in compensation last year.

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Child CEO Helping Disabled

This Child CEO is Helping Disabled People Navigate Public Spaces

NBC news disability app
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.

Apple’s Short Films on Accessible Tech

Apple’s latest series of short films shows how accessible tech can transform lives

Apple ipad
Meera Phillips types a message to friends on her iPad using text-to-speech technology.

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.

Meera's relationship with tech is just one of seven stories featured in a powerful video series created by Apple to spotlight the company's dedication to accessible technology. The videos were released in celebration of Global Accessibility Awareness Day on May 18, a day emphasizing the importance of accessible tech and design.

"We see accessibility as a basic human right," says Sarah Herrlinger, senior manager for global accessibility policy and initiatives at Apple. "We want more and more people out there to not only see the work we're doing, but realize the importance of accessibility in general."

The videos showcase users with a wide range of disability identities and experiences — from Carlos Vasquez, a blind metal drummer, to Shane Rakowski, a music teacher with hearing loss.

"Now people know I have a lot to say. They know I am smart. They know me. They see me now as Meera."

And then there's spunky Meera, who likes to gossip and giggle with her friends on the side of the soccer field and mostly uses her iPad and a text-to-speech app to do so. Her natural voice can only force out short words like "no" and "yes." While Meera knows sign language, the majority of her friends don't.

Though she now has tech that works for her, it took Meera a long time to find a way to express herself. In fact, until 10 years ago, getting access to any assistive technology wasn't even possible.

Meera was born in India, living on the streets of New Delhi until she was adopted by her moms at age 5. She was nonverbal and homeless from birth, meaning she had no education and few ways of communicating.

But through accessible technology, along with education and sign-language learning, Meera has gained multiple ways to communicate.

"Now people know I have a lot to say," says Meera, who now lives in Atlanta with her moms and younger brother, Tucker. "They know I am smart. They know me. They see me now as Meera — their friend, their student, their neighbor. They know I have opinions and good ideas."


Accessibility features come standard with each Apple product, meeting a user's needs right out of the box. That's unparalleled in the mainstream tech industry, making the company a favorite of people with disabilities.

"There's not just one feature that encompasses 'accessibility,'" Herrlinger says. "There’s really a depth and breadth to what 'accessibility' means."

When I ask Meera via video chat how it feels to be able to communicate through her iPad, she taps out an answer on her tablet's keyboard, letter by letter. When she's finished, she plays it through a robotic voice: "It makes me feel happy and smart."

"There’s really a depth and breadth to what 'accessibility' means."

"You are smart," says Meera's mother, Carolyn Phillips, after hearing her answer. And she is.

Once, for example, Carolyn entered the house to hear the family's Amazon Echo inexplicably blaring Taylor Swift's newest album. Carolyn knew Meera, the only person home at the time, couldn't speak to the Echo to activate Alexa. Convinced the speaker was on the fritz, Carolyn turned off Taylor's tunes.

But a couple of minutes later, Swift's songs were booming yet again. Carolyn then realized Meera had hacked the system, connecting the Echo to her iPad to have it follow her commands. By making the two pieces of tech "talk" to each other, she could play Taylor Swift at top volume whenever she wanted.

The features built into each Apple device, Herrlinger says, allow people with disabilities to customize their devices to suit their own needs — even if one of those needs is blasting "Blank Space."

Middle school music teacher Shane Rakowski, for example, uses her iPhone to control her hearing aids, with the ability to toggle between a standard mode and a music mode. The music mode helps amplify low notes Rakowski can't hear otherwise, while the standard mode helps her to instruct her students.

Rakowski discovered her hearing loss four years ago while teaching a music class in Williamsburg, Virginia. One of her students was hitting the low notes on a marimba — but Rakowski didn't hear any sound.

Suddenly, things started to click. It had always been hard for her to understand the low voices of men, and she always spoke with a loud voice, even in one-on-one conversations. Now these low notes — notes her students could hear clearly — registered only as silence.

"The kids call them my bionic ears. They say I can hear everything now."

Rakowski, whose musical passion and profession rely on the ability to hear, started using hearing aids a little over a year ago. She switched to an iPhone from another phone company because of Apple's accessible technology.

"There's definitely a difference in the way I'm teaching after getting hearing aids," she says. "The students say I'm not as loud as I used to be. I can hear a student's question without asking the whole class to quiet down. I can hear kids talking in the back of the classroom, doing things they aren't quiet supposed to be doing.

"The kids call them my bionic ears. They say I can hear everything now."

hearing aid

Carlos Vasquez, a blind metal drummer and professional gamer from Houston, Texas, needs something incredibly different from technology than Rakowski. Yet, he uses the same products she does; he just tailors them differently to fit his needs.

"A lot of times when people think of accessibility, they think things need to be 'dumbed down.' That's not true."

While Rakowski relies on visuals to control the volume of sounds coming through her hearing aids, Vasquez relies completely on sound to navigate his Apple devices. His device speaks aloud what would normally be seen, with Vasquez using taps of his finger and his voice to select options and perform tasks.

"You basically have this device that, out of the box, is accessible to someone who is blind," he says. "You turn on this feature, and you can use it like anyone else. A lot of times when people think of accessibility, they think things need to be 'dumbed down.' That's not true. It's just a different way of doing the same thing."

Vasquez was born with cataracts, which were partially removed when he was very young. After the surgery, he had crystal clear, 20/20 vision. But the cataracts weren't removed completely, and before his teens, Vasquez developed glaucoma.

At 10, his vision started to fade. By 28, he was completely blind.

Now, Vasquez says he's adapted to blindness with the help of tech, using his iPhone to assist him in everyday tasks, like making phone calls or using social media.

"With over a billion people on the planet with a disability, that’s a billion reasons for accessible design."

"Technology doesn't change your life," he says. "What changes your life are the things you do for yourself — and then technology can come in and enhance what you are already doing."

For Vasquez, that means using tech to assist him in handling social media and public relations for his metal band, Distartica. By using VoiceOver, one of Apple's most well-known accessibility features, Vasquez has access to the same functions as a sighted person.

Apple says this universal, customizable accessibility is the driving force behind its innovations for people with disabilities.

"With over a billion people on the planet with a disability," Herrlinger says, "that's a billion reasons for accessible design."

meera playing soccer

When I ask Meera if she has anything else to add before we stop video chatting, she keeps coming up with something else to say. She's a true chatterbox — a captivating teen with stories to tell. But sometimes, even with accessible tech, it still isn't easy to be heard.

Typing your thoughts letter by letter, even with the aid of text prediction, is tedious work. It allows Meera to be deliberate with her thoughts, but also causes people who are used to quick conversations to lose interest. Meera often struggles to hook people in, failing to keep them around long enough for a discussion.

"Before I had the iPhone and iPad, people treated me like I had a disability. They talked about me, not to me."

To prevent this, Meera has pre-written statements plugged into her speech-to-text app to help her introduce herself. She plays some for me with the simple tap of a button. One describes her harrowing time as a toddler on the streets of New Delhi. Another explains all the things she likes to do, like playing soccer and listening to music, in hopes of finding friends with common interests.

The tactic isn't flawless, however. People of all ages still walk away from Meera out of impatience or frustration. But even though Meera has to type out every letter, word, and phrase, she says being able to assert her voice is worth it.

"Before I had the iPhone and iPad, people treated me like I had a disability," Meera says. "They talked about me, not to me. They didn't really know me."

She smiles. It's the type of grin that travels up to her eyes, leaving them gleaming.

"Now," she adds, "I can tell them who I really am."

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House Health Bill

A Little-Noticed Target in the House Health Bill: Special Education

medicaid special education class
Students at Merriman Park Elementary School in Dallas in 2014. The Richardson ISD Council of PTAs hosted a program called “Understanding Differences” to show students and teachers what it is like to have learning disabilities.

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.

“If I could have 10 minutes with President Trump, I could help him understand what we do, why it’s important,” Ms. Glenn said. “If he understood, he would protect it, because this isn’t Republicans and Democrats. It’s just kids.”

The new law would cut Medicaid by $880 billion, or 25 percent, over 10 years and impose a “per-capita cap” on funding for certain groups of people, such as children and the elderly — a dramatic change that would convert Medicaid from an entitlement designed to cover any costs incurred to a more limited program.

AASA, an advocacy association for school superintendents, estimates that school districts receive about $4 billion in Medicaid reimbursements annually. In a January survey of nearly 1,000 district officials in 42 states, nearly 70 percent of districts reported that they used the money to pay the salaries of health care professionals who serve special education students.

Republicans say federal health programs must be restructured to curb their soaring costs — the biggest driver of projected budget deficits — and force a smarter allocation of limited resources.

But in a letter sent to top lawmakers this week, a coalition of school educators and advocacy organizations said such efforts would force states to “ration health care for children.”

The advocates argued that under the House bill, the federal government would transfer the burden of health care to states, which would result in higher taxes, eligibility cuts or curtailed services for children. And they said that schools would have to compete for funding with other entities, like hospitals and clinics, that serve Medicaid-eligible children.

The ability of school systems to provide services mandated under the federal Individuals With Disabilities Education Act would be strained. The law is supposed to ensure that students with disabilities receive high-quality educational services, but it has historically been underfunded.

Under a little-noticed provision of the health care bill, states would no longer have to consider schools eligible Medicaid providers, meaning they would not be entitled to reimbursements.

“School-based Medicaid programs serve as a lifeline to children who can’t access critical health care and health services outside of their school,” said the letter sent this week by the Save Medicaid in Schools Coalition, which consists of more than 50 organizations, including the American Civil Liberties Union, the Disability Rights Education and Defense Fund, and the School Superintendents Association.

Ms. Glenn said she believed that Medicaid should be reined in. But, she said, schools are already reimbursed for only a fraction of the costs of services they provide.

The National Alliance for Medicaid in Education estimates that 1 percent of all Medicaid reimbursement goes to local school districts. Even without the funding, school districts would be legally required to provide special education services.

“I realize there have to be cuts, because Medicaid’s been out of control,” Ms. Glenn said. But, she added: “We have so many more demands. We’re not in it making money. We’re constantly in the hole.”

John George, executive director of the Montgomery County Intermediate Unit in Pennsylvania, said Medicaid primarily paid for speech, physical and behavior therapists.

Special education students make up roughly 16 percent of his student population, he said, and his most recent Medicaid reimbursement was about $5.4 million.

“It’s devastating,” Mr. George said of the potential impact of losing Medicaid funding. “Our most vulnerable citizens are going to be suffering the most. If any legislator votes for this, it’s unconscionable.”

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Building a Great Life premier

Premieres Thursday, May 11 at 8 p.m. on CPTV

Building a Great Life documentary
Repeats Sunday, May 21 at 6 p.m. and Monday, June 19 at 10 p.m.

Building A Great Life examines the case for closing Connecticut’s state institutions that provide congregate residential care for persons with intellectual and developmental disabilities, many with complex needs who receive a high level of state care and support. Could cost savings realized by closing the Southbury Training School and three regional centers be significant enough to ensure help for the two-thousand Connecticut families on a Department of Developmental Services waiting list for state supports? The one hour documentary explores how the notion of closing state institutions in favor of community living for persons with intellectual disabilities is both a moral and fiscal debate.

Join us for an advance screening of Building a Great Life:

Wednesday, May 10 | 5:30-7:30 p.m.
NEAT Center at Oak Hill
33 Coventry St.
Hartford, CT 06112

Reception with light hors d’oeuvres and beverages followed by screening

Eventbrite - CPTV's "Building a Great Life"

This screening is free and open to the public; however, registration is required.

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Special Ed School Vouchers May Come With Hidden Costs


New York Times

Tamiko Walker and her son
When Tamiko Walker transferred her son, she learned that she had waived some of his rights to disability support services. “I don’t understand why,” she said.

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.

Many parents, among them Tamiko Walker, learn this the hard way. Only after her son, who has a speech and language disability, got a scholarship from the John M. McKay voucher program in Florida did she learn that he had forfeited most of his rights.

“Once you take those McKay funds and you go to a private school, you’re no longer covered under IDEA — and I don’t understand why,” Ms. Walker said.

In the meantime, public schools and states are able to transfer out children who put a big drain on their budgets, while some private schools end up with students they are not equipped to handle, sometimes asking them to leave. And none of this is against the rules.

“The private schools are not breaking the law,” said Julie Weatherly, a special-education lawyer who consults for school districts in Florida and other states. “The law provides no accountability measures.”

McKay is the largest of 10 such disability scholarship programs across the country. It serves over 30,000 children who have special needs. At the Senate confirmation hearing for Betsy DeVos, President Trump’s education secretary, she cited research from the conservative Manhattan Institute, saying that “93 percent of the parents utilizing that voucher are very, very pleased with it.”

Legal experts say parents who use the vouchers are largely unaware that by participating in programs like McKay, they are waiving most of their children’s rights under IDEA, the landmark 1975 federal civil rights law. Depending on the voucher program, the rights being waived can include the right to a free education; the right to the same level of special-education services that a child would be eligible for in a public school; the right to a state-certified or college-educated teacher; and the right to a hearing to dispute disciplinary action against a child.

It’s not just Florida. Private school choice programs in Arizona, Colorado, Georgia, Oklahoma, Mississippi, Tennessee and Wisconsin also require parents to waive all or most IDEA rights. In several other states, the law is silent on the disability rights of voucher students.

The Walkers obtained a McKay voucher midway through their son’s second-grade year, when the Port St. Lucie school district told them it planned to remove the boy from general education classes and place him in a “cluster” classroom for students with emotional difficulties. (Ms. Walker, and another parent quoted in this article, asked that their children’s names not be published to protect their privacy.)

“He has more potential than that,” Ms. Walker said. The family, which is black, has filed a federal lawsuit accusing the district of racial discrimination and other wrongdoing, for disciplining their son harshly and refusing to place him in a general-education classroom.

The McKay program has not provided a simple alternative for the Walkers. They used an $11,000 voucher to enroll their son in the Achievers Institute of Science, Art and Technology. But they were caught unaware, they said, when the private school charged them an additional $2,400 in fees. (Achievers Institute has since gone out of business.)

The boy now uses his McKay voucher to attend the Virtual Schools of Excellence. He visits a local “learning center” two to three days a week, and the Port St. Lucie school district sends contractors there to provide him with speech and occupational therapy. He completes the rest of his instruction online, at home. “We’re happy to the point where he’s safe,” Ms. Walker said, but she regrets that her son no longer receives the same intensive instruction in social cues that he benefited from in public school, before he became a voucher student.

Federal law requires public school districts to assess the needs of special-education students enrolled in private schools. But districts are not obligated to provide those children with the same services they would receive in a public setting — even if a child’s private school tuition is taxpayer funded through a voucher.

Private schools that participate in McKay are not required to demonstrate that they use any type of specialized curriculum to meet disabled children’s needs. Still, many private schools say they go beyond the letter of the law in an effort to serve McKay students.

Trina Angelone, chief executive of the Virtual Schools of Excellence, said the school employed state-certified special-education teachers in both its online program and its in-person learning center, even though this is not required by law. A disabled child “going to a typical public school classroom is going to be with maybe 20 or 25 students, using textbooks, following along at the pace of the class,” she said. “In the virtual space,” she said, “the child is really getting one-on-one attention, moving at their own pace.”

But ultimately, there is no guarantee that students will receive the same level of disability services in private schools that they were entitled to in public school, a limitation that parents may not fully understand.

The state affidavit that parents sign in order to receive a McKay scholarship, for example, says nothing about forfeiting IDEA rights and services. It also does not explain that parents are responsible for any additional fees a private school may charge on top of a voucher, which can range from $5,000 to $23,000. The Florida Department of Education website provides other materials with more detail on the legal implications of participating in McKay, but the documents are difficult to find and decipher. District-level documents are often similarly opaque.

In a statement provided to The New York Times, the Port St. Lucie school district said, “Every effort is made to fully inform parents of the difference between public school services and private school services when a child utilizes a McKay Scholarship.” The Florida Department of Education declined requests for a phone interview. In an email, a department spokeswoman said there had been “very few complaints on this issue.”

Carla Donaldson
Carla Donaldson of West Palm Beach moved her son to a private school using public voucher money. She later moved him back to a public school. “There is no perfect school,” Ms. Donaldson said.

Robyn Rennick, a board member of the Coalition of McKay Scholarship Schools, said that private schools should be transparent with families about the services they provide but that the onus was on parents to ask detailed questions. “This is a buyer’s market,” she said. “You go and say, ‘I love your big building, but what is the expertise of your teachers?’”

Many McKay recipients, it appears, do eventually end up back in the public school system. The average length of time in the program is 3.6 years, according to data provided to The Times by the Florida Department of Education, and 85 percent of McKay recipients are in elementary or middle school.

Families who leave the program sometimes do so after moving residences. Other times they conclude that their child’s needs would be better met in a public school.

Carla Donaldson of West Palm Beach used a McKay voucher to send her son Zachary, who has autism spectrum disorder, to a private school that specializes in serving special-needs students. “I needed a break from the fight” for adequate services in a public setting, she said.

Zachary blossomed there socially, his mother said. “Unfortunately, he did pay the price academically,” she said. When Zachary returned to public school in eighth grade, he had to work to catch up. “There is no perfect school,” Ms. Donaldson said.

Lisa Siegel and her son in Fort Lauderdale.
Lisa Siegel and her son in Fort Lauderdale. Credit

Some families find they do not have a choice about whether to continue at a private school. Last year, Lisa Siegel was surprised to learn that she had few legal options after her seventh grader, who received a McKay scholarship, was suspended and then asked not to return to a religious school in Davie, Fla., near Fort Lauderdale, after a series of behavioral incidents.

Ms. Siegel’s son is on the autism spectrum. In public schools, IDEA guarantees parents the right to a hearing in which they can seek to overturn a disciplinary action if the child’s misbehavior was a manifestation of a disability. That is not the case in a private school.

“You don’t have much recourse,” said Ms. Siegel, whose son is now at a public school magnet program for marine sciences. “I never in a million years thought that in this private educational setting that my child would not be protected by state and federal law.”

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