Special Ed School Vouchers May Come With Hidden Costs

By DANA GOLDSTEIN

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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The Twenty-Something Free Fall

Image of people tending a giant machine

Young adults with autism face many new expectations and challenges — with none of the support that is available during high school.

BY DEBORAH RUDACILLE – 29 MARCH 2017 – SPECTRUMNEWS.ORG
Isaac Law spends most of his time on his computer, watching movies on Netflix, poring through Facebook posts or working on his latest project, a web comic called “Aimless” about two friends named Ike and Lexis who leave Earth to join a band of space pirates.

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

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

His mother, Kiely Law, is frustrated that he has, as she sees it, “plateaued” since graduating from high school at age 20. But as research director of the Interactive Autism Network, a registry for autism studies, she also knows that many young adults on the spectrum share her son’s difficulties transitioning to adult life.

“I think one of his challenges is that, like many adults with autism, he has some extremely narrow interests,” she says. “The opportunities that exist don’t fit what he’s interested in. And if you have difficulties relating to other people, and with social skills, and difficulties with transportation, it just snowballs.”

A giant wave of children diagnosed with autism in the 1990s are now reaching adulthood. Researchers estimate that about 50,000 young people with autism turn 18 every year. What’s clear is that this is a perilous phase for many of them, with at least three times the rate of social isolation and far higher rates of unemployment compared with people who have other disabilities. Whereas the majority of young people with language impairments or learning disabilities live independently, less than one-quarter of young adults with autism ever do so.
About 50,000 children with autism turn 18 every year in the United States
“There are a number of pretty good studies that describe fairly well the difficulties that young adults with autism face, in terms of unemployment and underemployment, in terms of comorbid mental health issues, in terms of not getting the services they need,” says Julie Lounds Taylor, assistant professor of pediatrics at Vanderbilt University in Nashville, Tennessee.

So far, however, there’s been little research to determine what sort of support and services these young people need. Instead of getting extra help during these vulnerable years, they face a major impediment: a sudden drop-off in support at graduation, when federally mandated services abruptly end — a phenomenon that researchers call ‘the services cliff.’

It may be that with enough help, some young people on the spectrum would regain their footing as they continue to mature. Advocates and parents are pushing scientists to investigate practical questions that will improve the often grim outcomes for these young adults. Although the problems they face are well documented, the causes and potential solutions are unclear. Some autism researchers are collecting data they hope will illuminate just why so many young adults on the spectrum are struggling — and what they need to get through this transition. “We need to know what puts people on a path of upward mobility,” says Taylor.

Over the cliff:

The period between ages 18 and 28 is critically important in establishing a foundation for adult life. For young people with autism, these years tend to be especially challenging. More than 66 percent of young adults on the spectrum do not secure a job or enroll in further education during the first two years after high school. Even two to four years later, nearly half are still not working or in school, according to the 2015 National Autism Indicators Report, produced by the A.J. Drexel Autism Institute in Philadelphia. And they struggle in other ways: One in four young adults on the spectrum is socially isolated, according to the report; only one in five has ever lived independently by their early 20s. Many also have two or more physical or mental health conditions in addition to autism, making it difficult to meet these milestones of adulthood.

In fact, the limited number of studies on young adults who have autism show that many lose ground once they leave school. While teens with autism are in high school, their autism features generally tend to improve over time, but progress slows dramatically after graduation. In a 2010 study, researchers found that once adolescents leave school, any improvement they had shown in repetitive behaviors, reciprocal social interactions and communication basically stalls. Meanwhile, those who had shown progress in problem behaviors such as self-injury and aggression backslide. “We found that when they left high school, that improvement slowed down a ton and in some cases even stopped,” says Taylor, who led the study.
One in four young adults on the spectrum is socially isolated.
The likely reason, Taylor and other researchers say, is that support for adolescents vanishes after graduation.

During high school, 97 percent of young people on the spectrum get some type of publicly funded help, according to the Drexel report, which is based on U.S. government statistics. For example, at age 17, about 66 percent of individuals with autism receive speech and language services; after high school, that dwindles to 10 percent. Similarly, the proportion of those receiving occupational or life skills therapy diminishes from more than half to just under one-third.

For many years, these problems weren’t even on researchers’ radar. “For the longest time, people were thinking about children and how to intervene in childhood,” Taylor says. It wasn’t until about a decade ago that she and other researchers began working to fill the gap — and encountered daunting obstacles.

For example, Vanderbilt University has an extensive autism research program, so when Taylor began studying young adults in 2009, she thought it would be easy to connect to potential study participants through the network. “I didn’t expect at all that it would be difficult to find families,” she says. She found that, in fact, it was “incredibly difficult” and much harder than persuading young children or their families to participate.

That may be because the autism community tends to be more tightly knit among families with younger children. Once children are older, families may not be as eager to participate in research because they no longer anticipate the kind of ‘quick fix’ they may once have hoped for.

Funding agencies also tend not to be interested in supporting studies that might help to tease out why the years after high school are difficult and disorienting, researchers say. That’s especially true for studies on services to help young people with autism transition to adulthood.
Only 1% of more than $200 million in U.S. federal funding for autism reaseach supports studies on adulthood.
The overwhelming majority of autism research is focused on children. Between 2008 and 2012, only 1 percent of federal research funding for autism went to study issues of adulthood, according to a U.S. Government Accountability Office report. “The emphasis on brain and biology really pulls away from those kinds of studies,” says Catherine Lord, director of the Center for Autism and the Developing Brain at New York-Presbyterian Hospital in New York City. “It’s very hard to get funding for something that doesn’t have some kind of biological marker.”

Funding agencies also generally prefer research that explores ‘mechanisms’ underlying autism. That typically implies a biological approach, which further limits the scope of research, Lord says. “Most [scientists], when they are looking for mechanisms, are looking for things that can be easily translated into animal models.”

She proposes that scientists could interpret the idea of a mechanism more broadly, evaluating therapies that improve conversational skills or other aspects of daily living. Some evidence indicates that adults with strong adaptive living skills — such as communication and social skills, personal hygiene, cooking, cleaning and ability to use public transportation — are more likely to be employed and to be better integrated into their communities than those with poorer skills. But so far, not much research has explored adaptive functioning during the transition to adulthood for people on the spectrum.

Young adults have participated in numerous autism studies over the years — many imaging studies have scanned their brains, for example. But those studies, although interesting to researchers, typically don’t have much direct impact on the participants’ quality of life.

In some cases, the young adults themselves may be resistant. Isaac Law, for one, doesn’t believe that there is such a thing as ‘autism.’ “Most people labeled autistic are just plain oddballs,” he says. He rejects the diagnosis and has no interest in participating in studies — even though both his parents are autism researchers.

Growing pains:

In 1990, Lord began tracking a large group of children with autism, starting at around 2 years of age. Her original intent was to determine whether it is possible to diagnose autism in children that early, and to explore whether the diagnosis remains stable into school age. About 130 people, now in their mid-20s, remain in the study. “About 45 people are verbal and really able to talk about what’s going on,” she says. The rest are intellectually impaired.

Over the years, Lord and her colleagues have collected information on the participants’ behavior, adaptive living skills, educational achievements, daily activities, and their mental and physical health.

The team has found that the adaptive living skills of people who have both intellectual disability and autism continue to improve from age 18 to 26. “That’s one of the things that’s been encouraging for us,” she says. “They are still learning all kinds of things.” One reason for this is that people on the spectrum with intellectual disability have access to a wide range of services even after they leave school. “There are places for them to work when they come out of school, there are service systems in place to help them find things to do during the day, to find places to live if they don’t want to continue to live with their parents or they need help, and to get transportation.”

Paradoxically, the picture is bleaker for young adults with autism of average intelligence or above. Some who do well in high school seem to crash when they get to college, Lord says. And those who are not in college or working struggle to find ways to fill their suddenly empty days. These young people express more distress about their circumstances than do those who have intellectual disability. Their parents are more likely to rate them as anxious or depressed compared with parents of young people with both autism and intellectual disability.
More than half of those with autism recieve no vocational or life skills services at all in their 20s.
“It’s much more difficult for the brighter, more verbal people with milder problems,” Lord says. Their own expectations — and those of their parents — are higher, for one thing. But they also face a more abrupt change in lifestyle, Lord says; they no longer enjoy the kind of structure and support that characterized their high school years. On their own for the first time in their lives, many flounder. And other than their parents, there’s no one around to help them navigate this sea of changes.

Few studies have probed just what sorts of help would actually improve quality of life for people on the spectrum. A 2012 review identified 23 studies focused on improving services for adults with autism; in 12 of those studies, the average age was 30 or younger. Most of those studies focused exclusively on employment, exploring job-skills training or support for people who already have jobs. Not a single study explored the range of services that people with autism might require, from medical and psychiatric services to transportation. States seldom pay for case managers to coordinate services, for people over 18 who don’t have intellectual disability.

Lord says that one big problem with young adult research is that it’s difficult to define what qualifies as a good outcome for a young person on the spectrum. A bright young woman with autism might find a job that doesn’t match her academic qualifications — but should that automatically be considered a poor outcome? What if she’s happy in the job?

“It makes us uncomfortable because it seems very arrogant for us to say, ‘This is a good outcome,’” Lord says. “That’s part of the complexity of this kind of research.”

These young people have their own priorities for the kind of research they believe should be funded, and those often differ vastly from what scientists or funding agencies would say. “For our independent adults, one of the top priorities is employment services: better support systems within the work environment,” says Kiely Law, who was involved in a 2015 survey of nearly 400 adults with autism and their caregivers in the Interactive Autism Network. The survey included people aged 18 to 71, with most in their 30s, but people of all ages agreed on this point.

Another priority was educational opportunities beyond high school, and the need for special support in that environment, Law says. An informal survey she carried out last year with a community advisory council turned up similar concerns. Apart from access to mental health providers, people on the spectrum report their research priorities to be work, education, bullying and discrimination, rather than biomedical research. But without evidence-based studies evaluating the cost and effectiveness of such programs, it’s unlikely that legislators will fund them.

Survey participants also mentioned the difficulty of finding healthcare providers — particularly specialists in mental health — skilled at working with adults on the spectrum. Once again, however, there is little information on how medication and other treatments for anxiety, depression and attention deficit hyperactivity disorder — all common among people on the spectrum — should be provided to adults with autism. “Health policy research has more to offer this group of individuals,” Law says.

Working it:

Sara and Abby Alexis, 24-year-old twins, both have autism. Abby takes a class at the local community college and works one day a week in a hair salon where she folds clothes, sweeps hair and washes dishes. She has just started a second job at a café. Sara just completed a continuing-education art class and has two part-time jobs: folding towels at a fitness center and packaging soap at a personal care products company. They are two of the lucky few to have found jobs that work for them — thanks to a program launched by parents who solved the service-cliff problem on their own.

The sisters got their jobs through Itineris, a community-based program created in 2009 by nine Baltimore families who realized that after high school graduation, there would be no specialized services available to help their children on the spectrum become more independent. In addition to providing job training, Itineris staff take the 70 or so young people in the program on outings to restaurants, amusement parks, movies and bowling.

Abby and Sara both love Itineris. “It’s good to make friends and be social,” says Sara. Abby has a boyfriend, whom she met at Itineris, and many friends. She is hoping to move into an apartment with her older sister in a year or two and become even more independent. “I want people to treat me like an adult, not like a kid,” she says. Working a paying job where she makes $9 an hour is part of that.
Only one in five adults with autism works full time, with average earnings of $8 per hour.
Researchers tend to focus on employment among young adults with autism for one simple reason. “We find that for many people, employment is not just about a paycheck. It’s about opportunities for social inclusion, meeting other people, for self-expression and identity formation,” says Paul Shattuck, director of the Life Course Outcomes Research Program at the A.J. Drexel Autism Institute.

But without the help of an organization like Itineris, finding a job is tough — and sticking with a job even tougher. Though about half of young adults on the spectrum work for pay at some point after high school, only one in five works full time, with average earnings of around $8 per hour. Their rates of employment are lower than those of people with language impairments, learning disability or intellectual disability alone.

Young adults with autism are more likely to work for pay if, like Abby and Sara, they are from middle- to high-income households and have decent conversational abilities and functional skills. Finding a job or being enrolled in school is no guarantee of consistent employment or earning a college degree, however. A 2015 study of 73 young adults showed that 49 either worked or were enrolled in some form of post-secondary education, typically college classes, at some point over the 12 years following high school graduation. However, only 18 were consistently employed or in school during that time. And only 3 of the 31 people who graduated from college found jobs in their field of study; most were either unemployed or had unskilled jobs in food service, retail or maintenance.

For young people from working-class and poor families, joblessness isn’t really an option, adds Shattuck. Last year, he and his colleagues launched a partnership with Philadelphia public schools and a state social services office to provide full-time internships and job training for young people with autism. The program is designed for people with intellectual disability; one participant is nonverbal, he says. Still, their families expect them to secure paying work of some kind. Most of the participants are African-American and come from families of modest means, Shattuck says. Families must apply to the program. “More importantly, each youth has to express a clear willingness and interest in working and learning,” he says.

The participants — only eight so far — rotate through internships in the Drexel University campus bookstore and other offices, with the aim of learning skills they can transfer to future jobs. “These are not volunteer ‘make-work’ positions,” Shattuck says. Though it is too soon to assess whether the program can help participants stay in jobs, Shattuck says that employers are pleased so far. “We’ve had tremendous buy-in from Drexel staff and supervisors.”

The researchers hope to expand the program next year. Funding comes from state and city agencies that already provide support for adults with intellectual disabilities, meaning that “it’s budget-neutral for those agencies,” Shattuck says. That should make it easier to replicate the program in other cities and states.

The limited research on young adults with autism makes it challenging to advocate for more services for them, says Shattuck. Legislators and their staffers all ask the same question: What proportion of young people on the spectrum will be able to live independently, and what proportion will need significant care for the rest of their lives?

“We don’t have the successful framework, the infrastructure, the tools to even answer those basic questions,” he says.
<h2New beginnings:
One day when Renee Gordon’s son Alex was 21, he bolted out of a moving car in the middle of the freeway. In order to subdue him, the police eventually threw him to the ground and handcuffed him. The incident was the culmination of a bad period for Alex, who has autism and is intellectually disabled and nonverbal. His anxiety had become particularly intense following a series of significant changes, including the departure of a longtime caregiver and the loss of school friends. After the incident, his parents, approaching retirement age, decided that they could no longer provide the structured environment that Alex needed at home. They were worried that he would have difficulty adjusting, but his experience has revealed that for people with autism, change and growth can stretch far beyond the teen years.

Alex moved to a group home in June 2014, where he now lives with two other men with disabilities and their caregiver. Gordon is astonished by the changes in her son. “It has been the most amazing transition for him,” she says. “He is far more independent, far more flexible.”

Alex still requires 24-hour care. But he has learned to zip his coat and pants, is far less fussy about food, volunteers at Meals on Wheels and attends social functions with his housemates and other peers, including a trip to the beach and a monthly nightclub at the League for People With Disabilities. And he finally has friends.

“We think that just because school ends at 18 or 21, that’s the end of learning,” Gordon says. But seeing the changes in her son, and recalling stories she has heard from other parents over the years about the great strides their adult children made in their 20s, she wonders if young adulthood might be the perfect time to teach new skills.
Four of five adults have never lived independently.
Shattuck says that he too has heard many “second wind” stories from parents about young adults with autism in their 20s and 30s. It leads him to ponder two fundamental questions: What are the conditions that facilitate this unexpected progress — and what’s going on in brain development that allows it to happen?

Shattuck doesn’t consider basic research and studies of services to be at odds. Understanding how the maturation and aging processes plays out in people with autism throughout life, he says, will improve their health, well-being and quality of life, as well as contribute to understanding mechanisms at the biological level. “It doesn’t have to be one or the other,” he says. “The point I try to make when talking to fellow scientists is: Yes, there is clearly a discrepancy between what the community wishes was funded and what actually gets funded. But I think it is a mistake to conclude that there needs to be a difference between those two goals.”

Gordon, who is married to a neurologist, agrees. Biological studies are important; so is research focused on what kind of help young adults like her son need right now, she says. “I would like more research into how you can make sure that these individuals have happy and fulfilling lives.”

For Isaac Law, happiness and fulfillment are represented by his web comic, which he hopes to publish by August 2018, when the Museum of Science Fiction opens in Washington, D.C. His dream is to be paid for his art as a cartoonist. “I would rather not get a job again,” he says. “I would just like to focus on my web comic if possible.”

The comic is a buddy comedy, centered around two friends who are inseparable. Law says he doesn’t have such a friend himself. The character of Lexis is based on his cousin, but, he admits, “we don’t talk to each other as often as we probably should.”

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SCOTUS Rules Texas Can’t Use Junk Science to Justify Executing the Intellectually Disabled

By Mark Joseph Stern - writer for Slate. He covers the law and LGBTQ issues.

Supreme Court Justices Samuel Alito, Ruth Bader Ginsburg
Supreme Court Justices Ruth Bader Ginsburg, Stephen Breyer, and Samuel Alito at the inauguration on Jan. 20. Ginsburg authored the majority opinion in Moore v. Texas.

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

Under 2002’s Atkins v. Virginia, states are forbidden from executing individuals with intellectual disabilities. But Atkins allowed states to create their own rules for determining when an inmate fit this category. In 2014’s Hall v. Florida, the court noted that states’ discretion here is not “unfettered”—it must be “informed by the medical community’s diagnostic framework.” If states had “complete autonomy to define intellectual disability as they wished,” the court explained, “Atkins could become a nullity, and the Eighth Amendment’s protection of human dignity would not become a reality.”

Texas, however, currently rejects the medical community’s current framework in favor of obsolete standards. To determine whether an inmate is disabled, the Texas Court of Criminal Appeals held that courts must use intellectual disability guides written in 1992. In addition, the CCA allowed courts to use pseudoscientific “evidentiary factors” drawn from stereotypes of disabled people and the character of Lennie from John Steinbeck’s Of Mice and Men. (Seriously.) For instance, the CCA fixated on the fact that the inmate in this case, Bobby James Moore, demonstrated “adaptive strengths,” such as the ability to mow lawns and play pool. The CCA seemed to believe that all intellectually disabled people are, as one amicus brief put it, “incapable of any but the most rudimentary tasks,” and that individuals with any “adaptive skill” cannot be disabled.

Current medical consensus rejects this misconception as little more than a “lay stereotype.” But that didn’t matter to Texas. In fact, the CCA actually barred lower courts from using more recent science in evaluating a death row inmate’s claim of intellectual disability.

In a decision written by Justice Ruth Bader Ginsburg, the Supreme Court found that these standards clearly violated Atkins and Hall. “As we instructed in Hall,” Ginsburg explained, “adjudications of intellectual disability should be ‘informed by the views of medical experts.’ That instruction cannot sensibly be read to give courts leave to diminish the force of the medical community’s consensus.” Moreover, Texas uses several alleged “indicators of intellectual disability” that “are an invention of the CCA untied to any acknowledged source.”

“Not aligned with the medical community’s information,” Ginsburg wrote, “and drawing no strength from our precedent,” these factors create “an unacceptable risk that persons with intellectual disability will be executed.” Accordingly, Texas must permit the use of “current medical standards” in determining whether an individual is intellectually disabled and may not use the “wholly nonclinical” factors concocted by the CCA.

In dissent, Chief Justice John Roberts, joined by Justices Clarence Thomas and Samuel Alito, complained that the court looked to “medical assessment[s] of clinical practice” rather than “societal standards of decency” to determine whether Texas’ guidelines violate the Eighth Amendment. According to Roberts, the court should’ve looked to see whether other states operated under similar rules; if a sufficient number of them did, then Texas could not, by definition, have breached “societal standards of decency.” But even Roberts admitted that the factors drawn from stereotypes and literature cannot possibly comport with the Eighth Amendment.

Tuesday’s decision is a significant contribution to the Supreme Court’s developing—and increasingly progressive—case law regarding capital punishment and intellectual disability. Justice Anthony Kennedy, Ginsburg, and the court’s three other liberals have made great strides in limiting states’ ability to execute inmates with mental impairments. The bad news is that the ruling split 5–3 on predictable ideological grounds. This line of cases is recent and controversial, making it a tempting target for reversal by a future conservative majority. As Moore makes clear, the lives of intellectually disabled inmates still depend upon the balance of the Supreme Court.

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The Supreme Court Rules In Favor Of A Special Education Student

Supreme Court Chief Justice John Roberts
ANYA KAMENETZ, NPR March 22, 201712:04 PM ET

School districts must provide students with disabilities the chance to make meaningful, "appropriately ambitious" progress, the Supreme Court said today in an 8-0 ruling. Download the Endrew F v. Douglas County decision here

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

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

The Supreme Court today sided with the family, overturning a lower court ruling in the school district's favor.

The federal Individuals With Disabilities Education Act, or IDEA, guarantees a "Free Appropriate Public Education," or FAPE, to all students with disabilities. Today's opinion held that "appropriate" goes farther than what the lower courts held.

"It cannot be right that the IDEA generally contemplates grade-level advancement for children with disabilities who are fully integrated in the regular classroom, but is satisfied with barely more than de minimis progress for children who are not," read the opinion, signed by Chief Justice John Roberts.

The case drew a dozen friend-of-the-court briefs from advocates for students with disabilities who argued that it is time to increase rigor, expectations and accommodations for all.

"A standard more meaningful than just above trivial is the norm today," wrote the National Association of State Directors of Special Education.

The ruling seems likely to increase pressure from families and advocates in that direction.

Significantly, Judge Neil Gorsuch, currently in confirmation hearings for the Supreme Court's vacant ninth seat, has repeatedly ruled the other way on similar cases.

Gorsuch's opinions in eight out of ten cases involving students of disabilities all tended toward limiting the responsibilities of school districts — for example, if they leave school of their own accord out of frustration. IDEA's standard of a "free appropriate public education," reads Gorsuch's opinion in one of these cases, "is not an onerous one."

When questioned on his record, in light of this new ruling, during his hearing today by Texas Sen. John Cornyn, he said "I was wrong, Senator, because I was bound by circuit precedent, and I'm sorry."

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What’s at Stake for Americans with Disabilities in the Trump Era

President Donald Trump made his disregard for the 1 in 5 Americans with disabilities abundantly clear during the campaign when he mocked a disabled New York Times reporter. But that disregard is no longer just hateful words. Now Trump’s administration, as well as his Republican colleagues in Congress, are pursuing policies that would put the health, education, and economic security of people with disabilities and their families at grave risk.

The GOP plan for health insurance would make dramatic cuts to Medicaid, decimating services that enable people with disabilities to live independently and work. Meanwhile, Trump and his colleagues in Congress are poised to slash Supplemental Security Income, nutrition and housing assistance, early childhood education, funding for civil legal aid, and more, all while protecting tax cuts for the wealthy and corporations. Betsy Devos, recently confirmed as Trump’s secretary of education, was not even aware of the Individuals with Disabilities Education Act, the longstanding federal law that ensures that students with disabilities have access to a free and appropriate public education.

Join the Center for American Progress for a discussion of what is at stake for people with disabilities under the new administration and Congress and where the progressive movement must go from here to effectively champion a policy agenda that ensures that people with disabilities have a fair shot. CAP will also be releasing a video showcasing the voices of people with disabilities and how they and their families would be impacted by the Trump policy agenda.

Neera Tanden, President and CEO of the Center for American Progress

Keynote remarks:
Anastasia Somoza, disability activist and Democratic National Convention speaker

Featured panelists:
Marty Ford , Senior Executive Officer, The Arc of the United States
Valerie Williams, Director of Government Relations, ‎National Association of State Directors of Special Education
Ari Ne’eman, CEO, MySupport.com
Andraea Lavant, Inclusion Senior Specialist, Girl Scouts Nation’s Capital
Marta Conner, mother and advocate

Moderator:
Rebecca Vallas, Managing Director, Poverty to Prosperity Program, Center for American Progress

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What A Waste Of Money

Southbury Training School

Southbury Training School
The institution for the intellectually disabled is serving a dwindling population at the huge cost of $1,000 per client a day. (Carolyn Lumsden / Hartford Courant)

The Southbury Training School is an obsolete, rundown institution that hasn't admitted any new residents in 30 years. The state has to commit to closing it. Its wild overtime costs continue to suck taxpayer money that could be better spent serving many more people with intellectual disabilities at much more reasonable cost in smaller private facilities.

One state worker at Southbury, for example, pumped up her $60,000 base salary to a hard-to-believe $196,000 with overtime this past fiscal year, The Courant's Josh Kovner has reported. With fringe benefits, she earned $237,886 — more than Gov. Dannel P. Malloy makes.

Overtime Extravagance

Four of her colleagues earned an are-you-kidding-me $100,000 each in overtime. Another 50 earned $50,000 or more in OT.

Altogether, Southbury's 615 full- and part-time employees (serving just 229 clients) earned an average of $20,000 each in overtime.

This is an extravagant waste of public money. Moreover, it's inhumane to work people too many hours. Long hours lead to high injury rates and poor performance, and that could endanger the elderly, vulnerable residents of Southbury.

The state is paying too steep a price to keep open an outmoded institution serving a dwindling population at the huge average cost of $360,000 per client per year — nearly a thousand dollars a day. It costs half of that or or less to care for a client in a private facility.

But the state agency that runs Southbury Training School has yet to report to a legislative committee on how to close the exorbitant institution, as it was ordered to do back in late 2015. You'd think a state financial crisis would speed the agency up.

A spokeswoman for the agency, the state Department of Developmental Services, says that personnel spending is actually down at Southbury. What's driving costs up are such things as state pension debt, she says.

Well, no wonder. Overtime is part of state workers' pension calculation. Pension padding is helping to put Connecticut state government in a financial ditch, yet it continues.

Money For Some, Not Others

Southbury isn't alone among state-run institutions with out-of-control overtime costs. A worker at an institution in Newington was paid $150,000 in OT in the last fiscal year, on top of his $57,000 salary. For two years in a row, his total compensation was at least $262,000.

Yet there's no money in the governor's budget proposal for day programs for the intellectually disabled. Nor is there money for the 2,100 families on the waiting list for services or residences for their disabled relatives.

While state employees run up overtime to astronomical levels, the vast majority of intellectually disabled people are served by the private sector, where the cost is half or less, with no difference in quality — or they're not being served by the state at all, but are being cared for at home, often by aging parents.

Some of the families of those on the waiting list and others have called for Southbury to close by 2020 and for its clients to be moved to smaller private facilities, where they'll be cared for well but not so wastefully. The families have been unable to get a commitment from either the governor or the legislature.

So they wait for years, sometimes decades, for a place for their disabled loved ones to live, while workers at state institutions earn outrageous sums that eat up state funds. How is this fair?

Copyright © 2017, Hartford Courant

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AUCD, NDRN and NACDD Statement

Joint Statement – Concerns about the Proposed Changes to Medicaid in the House Republican Policy Brief

3 logos

DOWNLOAD THE JOINT STATEMENT

As the three national Developmental Disabilities (DD) Network partners that represent the entities authorized in the DD Act whose members annually advocate for and provide hundreds of thousands of clinical services and home and community based supports to people with disabilities and their families, the Association of University Centers on Disabilities (AUCD), the National Disability Rights Network (NDRN), and National Association of Councils on Developmental Disabilities (NACDD) are concerned about the policy brief distributed by the House Republican leadership on Thursday, February 16th to its Members about repealing and replacing the Affordable Care Act (ACA).

The goals of the policy brief distributed last week are to "put Medicaid on a budget" and to "return the focus of the program back to helping those most in need."

While these two goals sound reasonable, they will likely result in constraints that will harm people with disabilities and those who support and serve them. We are concerned about three specific items in the policy brief: 1) proposed per capita caps with the option for block grants, 2) proposed Health Savings Accounts, and 3) "next generation high risk pools."

The proposed per capita allotment to be paid to states for each person eligible for Medicaid will threaten the long-standing guarantee to provide health care and support services to people with disabilities. Block grants would similarly cap the amount of money each state receives without allowing for adjustments when there are changes to health care costs, population growth, or in response to economic downturns, or natural disasters. In 2014, there were almost 600,000 people with disabilities waiting for home and community based services from Medicaid. With the introduction of per capita allotments to states, it is only likely this number will increase. We have only to look at the cuts to Medicaid Texas made last year to see the reduction in services for those with disabilities.

The proposed health savings accounts also are of great concern. While designed to increase consumer control over health care costs, this is often not possible for people with disabilities. Living in rural or frontier America, or even in medium size cities, people with disabilities often have no choice about their health care and durable medical equipment providers. In addition, the amount of money allotted in a health savings account is often only a fraction of the cost of annual care for a person with a disability.

We are also concerned about the high risk pools described in the policy brief as State Innovation Grants. Without adequate funding, high risk pools will either deny coverage to some of those in need or the state pools will offer limited services. Either way, those with disabilities will suffer.

We urge the House Republican leadership to offer a plan that protects people with disabilities from the discrimination they experienced prior to the implementation of the Affordable Care Act and to ensure people with disabilities will have access to health care and support services. Health care coverage that does not include durable medical equipment; rehabilitative, habilitative, and mental health services; and preventative services will greatly harm the health and well-being of people with disabilities.

We look forward to working with the House leadership and all Members as Congress considers revisions to the ACA and Medicaid. For more information please contact: Kim Musheno (kmusheno@aucd.org), Eric Buehlmann (eric.buehlmann@ndrn.org), and Cindy Smith (csmith@nacdd.org)

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Malloy Announces Plan To Expand Housing For People With Intellectual Disabilities

by David Owens, Contact Reporter

The governor on Friday formally announced his plan to expand housing opportunities and services for people with intellectual disabilities.

Gov. Dannel P. Malloy included $3.8 million in his proposed budget for what he termed the "intellectual disability partnership initiative." The goal is to reduce the waitlist for people with intellectual disabilities who need state-funded housing and to find new ways to address the need.

Malloy also proposed $1 million in bonding funds to convert group homes to supportive housing units, residential care homes or community care homes for people with intellectual disabilities.

"Although we have set aside $1 million on the capital side we will put as much money into this fund to make those conversions ... as can be used," Malloy said Monday morning at an Oak Hill facility on Coventry Street. Oak Hill is a large private provider of services to people with disabilities.

Of the $3.8 million allocated by Malloy, $1.8 million would go to for pay parity. Private service providers typically are paid less than state employees who do the same work.

"This will allow lower-rate providers to be increased without taking money away from those folks who are doing such a good job already," Malloy said. The state continues to move toward privatizing such services, Malloy said.

Malloy said $1 million of the $3.8 million is to find ways to more efficiently use the Department of Developmental Services' half billion dollar budget to serve more people.

"The [intellectually disabled] community would like to see more people served," Malloy said. "I would like to see more people served." And there are less expensive ways to provide services, Malloy said.

Of the 16,000 clients of the state Department of Developmental Services, only a little more than 800 live in state facilities — but those locations receive a disproportionate amount of funding for overtime and other expenses. State workers at the largest institutions routinely double their base salaries with overtime. Still, they have the support of the families of the clients they serve. That fervent support has helped to slow the pace of the planned privatization of as many as 40 state group homes. Malloy has pushed these conversions, a trend nationally, as a money saver for Connecticut. Two regional campuses in Meriden and Stratford have closed, but not all the residents have moved into private settings.

Malloy has also proposed shutting down the on-campus fire department at the Southbury Training School. The department has remained even as the school's population dwindled to fewer than 250 residents and the unused portions of the complex are being mothballed.

In 2014 the chief, assistant chief and 12 firefighters shared nearly $600,000 in overtime. Total costs for the fire department came in at just under $2 million that year.

"The time is coming that Southbury as we know it will not exist," Malloy said. He said he does not expect the training school to close within the next two years, but as the population at the school continues to shrink there will be more discussions about how to serve the people who live there.

Copyright © 2017, Hartford Courant

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Disability Advocates Applaud, Lament Malloy’s Budget Proposal

Governor Dannel P. MalloyCopyright © 2017, Hartford Courant

With Gov. Malloy’s budget proposal out in the open, here are a few things to know about what it entails.

Advocates for the more than 16,000 people with intellectual disabilities who are served by the state are reacting favorably to some aspects of Gov. Dannel P. Malloy's proposed budget, including an increase of about $4 million to, among things, help create more community settings for people now living in state facilities.

They also applauded the closing, at a savings of $1.6 million, of the on-campus fire department at the Southbury Training School — a unit that has hung on year after year as the population has dwindled to fewer than 250 residents and the unused portions of the complex are being mothballed.

But there was despair over the lack of funding for day programs and job training for high school graduates in 2017 and 2018 — as many as 600 young people who are turning 21 and will have completed their federally mandated schooling. For decades, these graduates went fairly seamlessly into the social, recreational, and skill-building programs for young adults. In the last few years, funding cuts have restricted these opportunities.

"So they go from a relatively enriching school environment, with a focus on transitioning to adulthood, to nothing — no programming," said Shannon Jacovino, of The Arc Connecticut, which has mobilized thousands of families to press Malloy and the legislature for expanded and improved services within the existing budget of the Department of Developmental Services.

Jordan Scheff, the acting commissioner of the DDS, said making up for the lack of funding for new high school graduates is a challenge facing the department, one that requires "efficiencies … cooperation, collaboration and innovation" in other areas of the $525 million-a-year agency.

He said a portion of the nearly $4 million a year that Malloy added would help some of the families on a lengthening waiting list for residential placements and in-home supports. And for the first time in years, DDS would be able to raise the payment rate for a group of private providers. The private, non-profit agencies who have contracts with DDS serve the vast majority of the department's clients.

Tom Fiorentino of West Hartford, the father of a young man with an intellectual disability, said Malloy's budget proposal is a "mixed bag" that suggests he's heard the call of thousands of parents who have attended protests and public hearings at the capital, but that still falls short of reforming the system.

"We are gratified he has proposed positive steps to address the residential waiting-list crisis," said Fiorentino, a former assistant state attorney general who is president of the board at The Arc Connecticut. "At the same time, we are deeply concerned that his budget contains no funding for new graduates."

Of the 16,000 clients of DDS, only a little more than 800 live in state facilities — but those locations receive a disproportionate amount of funding for overtime and other expenses. State workers at the largest institutions routinely double their base salaries with overtime. Still, they have the support of the families of the clients they serve. That fervent support has helped to slow the pace of the planned privatization of as many as 40 state group homes. Malloy has pushed these conversions, a trend nationally, as a money saver for Connecticut. Two regional campuses in Meriden and Stratford have closed, but not all the residents have moved into private settings.

Scheff said the closing of the fire department at the Southbury Training School "has been under discussion for some time."

He said the responsibility of answering emergency calls at the campus will fall to the town of Southbury, which has volunteer fire and emergency-medical units.

"DDS will continue working with the town … to make sure the transition is a smooth one, and that all residents' emergency needs will continue to be met," Scheff said.

Jeff Manville, the Southbury first selectman, did not immediately return phone calls seeking comment. Former First Selectman Ed Edelson told The Courant in 2015 that the town expected that coverage of the state campus would eventually shift to the town.

Over the years, the state firefighters based at the Southbury campus have responded thousands of times to assist town crews or to handle calls when those crews were tied up. The town was never charged a fee.

The state firefighters also have inspection and fire-prevention duties. The Courant reported in 2015 that the chief, assistant chief and 12 firefighters shared nearly $600,000 in overtime in 2014. Total costs for the fire department came in at just under $2 million that year.

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Parents Of Special Needs Children Join Appeal Of Education Funding Decision

Julie Swanson of Durham
http://www.courant.com/politics/elections/92364040-132.html

Julie Swanson, of Durham, is the mother of a grown son with autism and a special education advocate. She is part of group that has joined with the state in its appeal of a Superior Court judge's ruling that would radically change the way public education is funded in Connecticut. Swanson and advocates across the state were stunned by Judge Thomas Moukawsher's suggestion that school districts could deny educational services to profoundly disabled students. (Cloe Poisson)

Parents and advocates have joined in the state's appeal of a judge's ruling striking down Connecticut's school-funding formula, seizing on language that described some children with profound developmental disabilities as possibly incapable of learning and unworthy of local education dollars.

"These were the arguments of the 1940s and 1950s, when they wanted to keep children in institutions," said Shira Wakschlag, the lead lawyer for The Arc in Washington, D.C.

"Not only does it violate federal law, it flies in the face research that says that even children who do not look like they are learning, are taking in information," Wakschlag said.

Her organization has joined the Connecticut chapter of The Arc, a constellation of national disability-rights groups, and a dozen Connecticut parents of students with developmental disabilities, in the filing of three amicus briefs. They serve to complement Attorney General George Jepsen's appeal of Superior Court Judge Thomas G. Moukawsher's decision in September.

In sworn affidavits collected by special-education lawyer Andrew Feinstein, the parents described battling school districts for educational programming for their children and the progress that many of the children made when they were given the chance. As the children grew, the parents said, in many cases they required less medication and less intense staff supervision, and became markedly more independent.

Julie Swanson Augeri's son, Alex, has autism, an intellectual disability, and doesn't speak. Beginning when he was 3 years old, Swanson Augeri, of Durham, had to battle for services far more extensive than school officials were prepared to offer.

"Had I accepted the minimal progress and outlook that many in the system expected for him, I feel his behaviors and lack of skill would have become barriers to a meaningful life," Swanson Augeri said in her affidavit.

In an interview, she said, "Alex would have been one of the children the judge was talking about, as not being worthy of an education."

Now 22, Alex, works at horse farm, volunteers at a hospital, has a host of friends, and is independent in most of his daily activities. Had he not had the opportunity to progress in school, he would require much more public funding for his support than he does now, Swanson Augeri said.

"He has a life full of meaning," she said.

The national groups said they felt compelled to join in the appeal because the implications of the judge's opinions on special education were too explosive to ignore. And the stakes are even higher now, they said, as Betsy DeVos, President Donald J. Trump's nominee for secretary of education, seeks confirmation from Congress. DeVos favors leaving special-education funding decisions up to the school districts in individual states, which often balk at the costs. Her opponents point out that federal law guarantees a free and appropriate education for all students, including those with disabilities.

"When she said special education should belong to the states -- that is just frightening and of course it violates federal law," said Nancy Alisberg, the top lawyer for Connecticut's Office of Protection and Advocacy for Persons With Disabilities.

Alisberg assisted the National Disability Rights Network, based in Washington, D.C., in filing its amicus brief with the Connecticut Supreme Court.

Moukawsher ruled in a longstanding lawsuit pitting an atypical coalition of teachers and school administrators, and cities and suburbs, against the administration of former Gov. M. Jodi Rell. He rightly pointed out inequities in a state with both impoverished schools and sublimely wealthy ones, but he ventured into areas that are the responsibility of elected lawmakers, not a single appointed judge, say critics of the ruling.

The judge found that the state's funding of education met the Constitutionally required minimums, which was a blow to the coalition's case and is where Jepsen wanted him to stop. But the judge went further, saying the system by which the state funds schools was "irrational" and often not linked to teaching children. Ruling in September 2016, he gave the legislature until March to propose a new system which he would assess.

And he went further. Referring to special education, the judge said, in part, "The call is not about whether certain profoundly disabled children are entitled to a 'free and appropriate education.' It is about whether schools can decide in an education plan ... that the child has a minimal or no chance for eduction, and therefore the school should not make the expensive, extensive, and ultimately proforma efforts."

That language, said Feinstein, one of the state's most seasoned education lawyers, "would give school boards license to provide substantially less services. As it stands now, many skimp anyway, and some just babysit."

Intentionally or not, Moukawsher's ruling "pits special education students against regular education students," said Shannon Jacovino of The Arc Connecticut. "If this happened with students' race or religion, there would be a massive outcry."

Wakschlag, of The Arc in Washington, D.C., said research shows that non-disabled students benefit on many levels from having disabled students in class.

Both the coalition and the state view Moukawsher's ruling as flawed and are appealing. Among the arguments of Jepsen and Associate Attorney General Joseph Rubin are that Moukawsher's ruling is overbroad, and that he ventured into policy areas that are the province of an elected legislature.

In an op-ed piece in The Courant a month after the ruling, Moukawsher revealed that he has struggled most of his life with attention-deficit/hyperactivity disorder.

"[W]e are entitled to be judged as individuals and, as we all should be, with reason and common sense," Moukawsher wrote of those with similar impairments. "After having said nothing about this to virtually anyone at any time, I think it may be worth it for someone in my position to share my story and assert my conviction that our group is everywhere, is of every stripe, and can do everything."

Moukawsher did not say why he chose to raise questions in his ruling about whether schools should pay to educate certain children with profound disabilities, a position that Feinstein described in his brief as nothing less than "utterly cruel."

Rhonda Stearley-Hebert, spokeswoman for the Judicial Branch, said Moukawsher can't comment on his ruling because the code of conduct bars judges from remarking about pending matters.

Jepsen said he welcomed the amicus briefs.

"We are in agreement," Jepsen said in an interview. "This decision violates federal law. Speaking personally, as a citizen, my heart goes out to these families."

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