Musical theatre student Evan W. Gadda has heard stories about Burning Man but hasn't made the journey himself. He is asthmatic. and because of cerebral palsy, paralyzed and confined to a wheelchair, so making the trip to Black Rock City has been deemed impossible, until now. Through a HTC Vive VR headset, he has been able to attend the desert event virtually.
His response? "Oh my God."
The team at University of Nevada, Reno who created the experience for Gadda, also sent him to Squaw Valley to (virtually) ski, something he hasn't done since he was 15 years old. It brought him to tears.
The Education Department has rescinded 72 policy documents that outline the rights of students with disabilities as part of the Trump administration’s effort to eliminate regulations it deems superfluous.
The Office of Special Education and Rehabilitative Services wrote in a newsletter Friday that it had “a total of 72 guidance documents that have been rescinded due to being outdated, unnecessary, or ineffective — 63 from the Office of Special Education Programs (OSEP) and 9 from the Rehabilitation Services Administration (RSA).” The documents, which fleshed out students’ rights under the Individuals with Disabilities Education Act and the Rehabilitation Act, were rescinded Oct. 2.
A spokeswoman for Education Secretary Betsy DeVos did not respond to requests for comment.
Advocates for students with disabilities were still reviewing the changes to determine their impact. Lindsay E. Jones, the chief policy and advocacy officer for the National Center for Learning Disabilities, said she was particularly concerned to see guidance documents outlining how schools could use federal money for special education removed.
“All of these are meant to be very useful … in helping schools and parents understand and fill in with concrete examples the way the law is meant to work when it’s being implemented in various situations,” said Jones.
President Trump in February signed an executive order “to alleviate unnecessary regulatory burdens,” spurring Education Department officials to begin a top-to-bottom review of its regulations. The department sought comments on possible changes to the special education guidance and held a hearing, during which many disability rights groups and other education advocates pressed officials to keep all of the guidance documents in place, Jones said.
This is not the first time DeVos has rolled back Education Department guidance, moves that have raised the ire of civil rights groups. The secretary in February signed off on Trump’s rescinding of guidance that directed schools to allow transgender students to use bathrooms in accordance with their gender identity, saying that those matters should be left up to state and local school officials. In September, she scrapped rules that outlined how schools should investigate allegations of sexual assault, arguing that the Obama-era guidance did not sufficiently take into account the rights of the accused.
UConn UCEDD Awarded $10M Cooperative Agreement to Improve Early Childhood Workforce Development through Early Childhood Personnel Center
The Early Childhood Personnel Center (ECPC), funded by the Office of Special Education and Rehabilitation Services, Department of Education, will continue and build on the work of the current Early Childhood Personnel Center to increase the capacity of State IDEA Part C and B/619 administrators, along with administrators in other early childhood service sectors and early childhood faculty teaching at institutions of higher education to improve outcomes for young children with disabilities and their families across the country.
The purpose of this Center is threefold:
To increase the capacity of state systems to implement, scale up, and sustain a coordinated comprehensive system of personnel development (CSPD) to ensure local personnel have the competencies to deliver high-quality services and inclusive programs to improve outcomes for young children with disabilities and their families;
To increase the knowledge, skills, and competencies of State (and Territory) IDEA Part C and B/619 administrators to lead systemic improvement efforts, actively engage in broader early childhood initiatives, and build more effective and sustainable systems that can support a competent early childhood workforce to improve outcomes for young children with disabilities and their families; and
To increase the knowledge, skills, and competences of early childhood faculty teaching at institutions of higher education, along with other professional development staff, to align programs of study to state and national professional organization personnel standards, utilize adult learning principles, and integrate Division of Early Childhood recommended practices into programs of study.
“We are so pleased to announce another 5 years of funding to continue the work of the Early Childhood Personnel Center. We look forward to expanding our work with our Partner Organizations and TA centers, State Early Childhood Systems, Institutions of Higher Education and other stakeholders!”
- Dr. Mary Beth Bruder, Principal Investigator on the project.
Dr. Bruder, current Director of the Early Childhood Personnel Center, has put together a national team to carry out the work of this project. In partnership with the UConn UCEDD, dozens of nationally and internationally recognized organizations, institutions of higher education and highly experienced national leaders will continue to build upon the efforts of the Early Childhood Personnel Center.
Diane Craglow was caring for a 14-year-old autistic boy named Connor Leibel in Buckeye, Ariz., one day in July. They took a walk to one of his favorite places, a park in an upscale community called Verrado. She was not hesitant to leave Connor alone for a few minutes while she booked a piano lesson for his sister nearby, because he usually feels safe and comfortable in places that are familiar to him, and he learns to be more independent that way.
When Ms. Craglow returned, she couldn’t believe what she saw: a police officer looming over the now-handcuffed boy, pinning him to the ground against a tree. Connor was screaming, and the police officer, David Grossman, seemed extremely agitated.
As Ms. Craglow tried to piece together what had happened, more officers arrived, spilling out of eight patrol cars in response to Officer Grossman’s frantic call for backup. Soon it became clear to Ms. Craglow that the policeman was unaware that Connor has autism, and had interpreted the boy’s rigid, unfamiliar movements — which included raising a piece of yarn to his nose to sniff it repeatedly — as a sign of drug intoxication.
As a graduate of Arizona’s Drug Evaluation and Classification program, Officer Grossman is certified as a “drug recognition expert.” But no one had trained him to recognize one of the classic signs of autism: the repetitive movements that autistic people rely on to manage their anxiety in stressful situations, known as self-stimulation or “stimming.” That’s what Connor was doing with the string when Officer Grossman noticed him while he was on patrol.
Images from Officer Grossman’s body camera show how the encounter turned into a situation that rapidly escalated beyond Connor’s ability to make sense of what was happening to him.
When an unfamiliar policeman rushed up to Connor and asked, “What are you doing?” he was honest, as autistic people usually are. “I’m stimming,” the boy said brightly. But Officer Grossman was unfamiliar with the word. On the body-cam audio, you can hear the officer’s uncomprehending response: “What?” You can also hear Connor try to calm himself down by saying “I’m O.K., I’m O.K.,” as he sustains abrasions on his back, arm and cheek by being held on the ground by the officer.
This is basically a worst-case scenario for anyone who cares for someone with a developmental disability, as well as for disabled people themselves, who live every day in fear that their behavior will be misconstrued as suspicious, intoxicated or hostile by law enforcement. And the encounter could have ended up a lot more tragic. Imagine if instead of being fair-haired and rail-thin, Connor had been powerfully built and black or Hispanic. A tense police officer, approaching a young man he thought was a threat to himself or others, might have been tempted to reach for his Taser or service weapon instead of his handcuffs.
That’s precisely what happened last year in North Miami, Fla., when a young autistic man named Arnaldo Rios briefly wandered from a group home to play with his toy truck on the street, and a passer-by called the police to report an “armed and suicidal” man sitting in the road.
When Officer Jonathan Aledda arrived, he had no idea that Mr. Rios had autism; no idea that the black man trying to calm him down, Charles Kinsey, was his behavioral therapist; and no idea that the flashing silver object in Mr. Rios’s hands was a toy, not a weapon. Officer Aledda fired at Mr. Rios. The bullet missed him, but struck Mr. Kinsey in the leg. The therapist survived, but the trauma of the incident resulted in Mr. Rios’s being placed into more restrictive institutions. He was unable to eat, suffered from night terrors and said to himself over and over, “I hate the police.” In April, state prosecutors charged Officer Aledda with attempted manslaughter and culpable negligence.
Studies show that these kinds of interactions between disabled people and law enforcement are terrifyingly common, and often go unreported. A white paper published last year by the Ruderman Family Foundation reported, “Disabled individuals make up a third to half of all people killed by law enforcement officers.”
Connor Leibel’s mother filed a complaint about her son’s treatment that resulted in an internal investigation by the Buckeye Police Department. It not only cleared Officer Grossman but also came to the unsatisfying conclusion that because the autism label covers a large spectrum of symptoms and behaviors it “would be very difficult to teach officers to recognize them all.”
That’s certainly true: Another way to frame the Centers for Disease Control and Prevention’s estimate that one in 68 American schoolchildren is on the spectrum is that autistic people make up a large and extremely diverse minority population. But police officers do not have to become experts in every aspect of autism to learn how to recognize people on the spectrum and treat them with respect.
Last year I attended a presentation by Rob Zink, an officer from the St. Paul Police Department in Minnesota, who started the Cop Autism Response Education Project to train his fellow officers how to interact with autistic people, inspired by his experience of having two sons on the spectrum. Officer Zink pointed out that sirens and flashing lights alone can be catastrophic sensory overload for people with autism, while a calm voice and a reassuring demeanor can go a long way toward de-escalating a tense confrontation.
He also stressed that law enforcement personnel should not expect autistic people to behave in the ways that non-autistic people do. For example, officers should not regard a refusal to look them in the eyes as a sign of guilt, as Officer Grossman did with Connor Leibel. In fact, many autistic people find it easier to interpret spoken instructions if they’re not compelled to simultaneously look the speaker in the eyes.
Similar programs are underway in several police departments across the country and around the world, but they are still too few and far between. The scarcity of these programs is a sad legacy of the decades when autism was mistakenly believed to be a rare condition, and many autistic people lived out their lives in state-run institutions.
Now that we know that autism is common, and comes in all the hues and shades of a broad human spectrum, we need to give law enforcement officers the knowledge that they need to avoid turning a routine call into a life-altering calamity.
We are two moms who met recently and although we are different in many ways — one a Republican and one a Democrat — we share a deep bond.
Our daughters, Sarah and Zoe, have never met but have a lot in common. They are 21-year-old women who have severe intellectual disabilities and autism. They just graduated from their school programs. But their graduation has not brought celebration.
The lack of a state budget is not an abstraction for our families. It means no funding for the daily program our girls urgently need. The Department of Developmental Services offers programs with structure, activities and goals to work toward. Our daughters are among the 330 new graduates who are waiting for the funding of these core services. They have waited more than two months so far.
As moms, we share in the despair of watching our girls regress. We watch them become disoriented because the structure they enjoyed at their schools has disappeared from their lives. We watch their boredom turn to anger, anger they can't express through words, because neither of them can speak.
Zoe's having temper tantrums, her sleep is disturbed, she's destroyed furniture and, worse, is hurting herself. Last week, she broke a window. Sarah is becoming less social. She is isolating, avoiding her siblings, only choosing to spend time with her parents. It seems she pulled all this loss and confusion inward and has shut out all the successes from years of school and community inclusion. We try to give them structure and keep them safe. Mostly, we fear for their future.
We also share another fear. The only program currently offering some help to our families is at risk of not being funded. Community First Choice is a cost-effective federal and state program that provides in-home caregivers for people with severe disabilities. These caregivers can assist at home and enable parents to work, while bringing our girls out into the community. With no funding for new grads and a growing residential waiting list, Community First Choice has become the only source of funding to help people with intellectual disabilities.
We both serve on the state Council on Developmental Services and have a pretty good sense of the immense challenges facing DDS. The private nonprofit agencies that serve the vast majority of DDS family members are starving for funds. We are aware of the many complex and controversial issues involving DDS, including the problem of excessive overtime costs. It is important to remember that those overtime costs reflect employees working an exhausting number of hours caring for vulnerable adults who cannot be left alone. We agree that this issue needs to be addressed, however our immediate concern is the 330 new graduates who need funding now. It would be unprecedented if 21-year-olds are excluded from receiving these DDS day services.
We have been to the state Capitol and testified at hearings about the needs of DDS families. We've met with legislators many times in the last year. We've introduced our daughters to them.
Hundreds of DDS families have been at the Legislative Office Building, telling their stories. The legislators we've met are kind and compassionate. They take the time to listen and seem to care. Yet, we've gone 75 days without a budget and no funding for our kids.
We know the challenges facing our girls, Zoe and Sarah, and we see their responses to being without the programs they need — Zoe, whose anger erupts outwardly, and Sarah, who shows her loss and confusion by withdrawing inwardly. Despite their contrasting reactions, they are clearly "speaking" the same message. They are like their two moms, one a Democrat and one a Republican, who joined together to speak the same message: Pass a budget that funds the crucial DDS day funding our children need to get their lives back.
Adrienne Benjamin lives in New Britain. Arlene Reith lives in Salem. Both are members of the state Council on Developmental Services, of which Benjamin is chair.
HARTFORD, CT — The capital city will no longer offer free metered parking for commuters with disabilities starting today.
But the head of the Hartford Parking Authority said it’s not about increasing revenues for a city flirting with bankruptcy.
“It’s too difficult to determine if a valid permit is used validly,” Hartford Parking Authority CEO Eric Boone said Wednesday. He also stated that current laws make enforcing violations extremely difficult.
According to a Hartford Parking Authority website, one in six vehicles at a meter displays an accessible parking permit. The website goes on to say this indicates that “there is a significant amount of permit abuse.”
Asked if this change is related to the current financial climate within the capital city, Boone stated that it is to improve accessibility.
“Is there a small bi-product here, yeah, probably,” Boone said, “but that’s definitely not our catalyst here.”
He said they are interested in making sure valid permit holders have accessibility. Making sure everyone pays may deter those looking to avoid paying a parking meter and give those who truly need it more accessibility.
For valid permit holders “their need is accessibility,” he stated.
According to the Department of Motor Vehicles, there are 6,022 accessible parking permits in Hartford. That number is less than five percent of the 238,903 total state permits distributed by the agency, and far less than the 16.7 percent statistic HPA is using as it’s basis to remove this parking benefit.
Dating back to former Hartford Mayor Pedro Segarra’s administration, HPA set out to survey the area to address suspected abuse, Boone said.
HPA estimated that at any given time approximately 7 percent of metered cars in the downtown area should display an accessible parking permit, legally. This number was arrived at after searching publicly available statistics addressing the number of disabled citizens who are at least the legal driving age, as well as DMV qualifications for permits. They also used the total number of assigned permits within the state based on DMV records and the Census.
“More than half of the handicapped parkers are fraudulent,” Boone asserted.
Without proper documentation of individual violations “there’s no way to know whether the person assigned the permit lives in that municipality or another,” William Seymour, DMV chief of staff, said. “Their permit is issued to a person, not a vehicle.”
But, with speculation of an excessive use of accessible parking permits, Seymour insists that DMV permits are issued in accordance with the law.
“We ensure that the proper medical certification is given for the permit,” Seymour said. “After that point, it’s a police issue.”
After consulting other municipalities, including Philadelphia, Chicago, and Atlanta to name a few, as well as the Office of Protection and Advocacy for Persons with Disabilities, HPA believes this is the best choice for the city to move forward, Boone said.
“We don’t want to add an undue burden on the disabled community,” Boone said.
The alternative, according to HPA, would be to follow a model adopted by Michigan, which creates a two tiered parking system for disabled commuters.
This approach would call for tighter restrictions on those issued an accessible parking permit, resulting in a longer, more discriminatory process.
“We chose the least intrusive path,” Boone said.
Leading up to the change, HPA launched a bilingual flyer campaign that started in July and will continue past the start date. The organization has issued 10,000 flyers to be placed on all metered windshields displaying an accessible parking permit.
There will be warnings issued for the first week. After that, citations will be issued.
In Hartford, failing to pay a meter is a $45 fine, and going over the metered time limit is a $25 fine.
Last weekend, the world watched in horrified shock as scenes of brutality fueled by racist, hate-fueled ideologies played out in the town of Charlottesville, Va., home of one of our country’s greatest public universities. By the end of the day Saturday, three people were dead: two Virginia state troopers who had been monitoring the march from a helicopter, and a peaceful protester who had come to courageously bear witness against the noxious philosophy of white supremacy.
As our nation struggled to process these horrific events, we learned that groups motivated by the despicable ideologies of fascism and racism are planning more such rallies, particularly targeting public universities as symbols of all that they most despise: diversity, inclusion, and a relentless pursuit of the truth.
Let me be very clear: as a university, we are committed to fearless intellectual debate and to the free speech that makes it possible. Those commitments are essential to another elemental aspect of our identity, which is our determination to create an intellectual community composed of dignity, compassion, and respect, which constitute the foundation of a free society.
As I watched Americans in 2017 march in a torchlight procession in imitation of similar displays in Nazi Germany, and saw them raise their right arms in salute to the Third Reich, I thought of the more than 2,000 UConn students and alumni who went to war against that regime, and especially the 114 who lost their lives fighting it. Their memories are sacred here, now and forever.
The University of Connecticut will never yield to the poisonous ideas and attitudes we saw last weekend, and which are attempting to gain strength throughout our country. It is my commitment – it is my promise – that this will always remain a university that stands firmly for the virtues of democracy, equality, civil discourse, and human rights.
Our values as a university – and, even more importantly, as a nation – are being tested right now. The ways that each one of us responds will reveal before the world our true character and the depth of our commitment to a democratic society.
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?’ ”
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.
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.)
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.
Dr. Gregory Snyder discussing patient cases with colleagues during his rounds at Brigham and Women’s Hospital in Boston
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 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.
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.
A 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.
Susan Campbell: State’s Woes Shouldn’t Be Zoe Benjamin’s, A Young Woman With Disabilities
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.
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 email@example.com.