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Saturday, January 31, 2015

Census Says 16 Million U.S. Children are Living on Food Stamps, Double the Number in 2007

From The Guardian (U.K.)

By Jana Kasperkevic
January 28, 2015

Census bureau finds about 16 million – or one in five – U.S. children lived in families that received food stamps in 2014.

Brandie Connell waits with her son Cory, five, at the Food
Bank of the Albemarle in Elizabeth City, North Carolina.
Photograph: James Robinson/Guardian

Even as Barack Obama tours the country to promote his middle-class economic plan, American families increasingly need public assistance to help put food on the table. A new report by the US census bureau found that 16 million children live in families that receive food stamps, a number that almost doubled between 2007 and 2014.

The numbers imply that one in five US children would have gone hungry last year had their family not qualified for public assistance.

The number of children living in poverty has risen sharply since the Great Recession. Before that, just one in eight US children – about 9 million – received food stamps.

Bolstering the evidence that more children are living in poverty, a recent report from the Southern Education Foundation found that more than half the children attending public school in the United States qualified for federal programs for free or reduced-price lunches. That percentage is the highest in at least 50 years, the SEF found.

In addition, in its annual report on poverty last fall, the U.S. census bureau found that one in five children lives in poverty. According to the UN, out of 35 economically developed countries, the US ranks 34th when it comes to child poverty.

The implications of the census data could be important for the Obama administration after focusing heavily on economic policy for the middle class in the State of the Union address despite not proposing any programs to lessen poverty.

Even after Congress cut $8.6bn from food stamps a year ago, the issue of food insecurity was barely mentioned during the 2014 election.

Obama’s rivals, including Republican Paul Ryan, have seized on the president’s relative silence by proposing their own plans that purport to reduce poverty.

Ryan in particular set his sights on overhauling federal aid for the poor last year in a 200-page report that took aim at everything from Head Start to Medicaid. The Wisconsin congressman argued in a speech last summer that “we spend $800bn each year on 92 programs at the federal level just to fight poverty. And yet we have the highest poverty rate in a generation ...You have to think we can do better than this.”

A large part of Ryan’s argument rests on the premise that federal aid weakens the ability of people to stand on their own feet. Political discussions about public assistance programs in America frequently lead to heated partisan debates about whether poor Americans are living on the government’s largesse.

But the census data released today defies a number of stereotypes about Americans who depend on public assistance.

For instance, it’s not just children with single parents who are at risk of going hungry. Even though the number of families with single mothers that depend on food stamps rose by 30% in the last seven years, the number of families with married parents who receive food stamps almost doubled, reaching 5.2 million. That’s compared to just 2.7 million in 2007.

It’s impossible to blame children for their situations, Dave Reaney, the executive director of an Alabama food bank, told the Guardian.

“You can’t blame the child, no matter what the circumstances. A two-year-old can’t take care of themselves,” he said. “Even the toughest, hard-nosed, anti-government-funding person would say: ‘Well, kids ought to be able to eat good.’”

In 2013, 44% of children under the age 18 lived in low-income families – those with an income below $47,000 a year for a family of four. That’s equivalent to 31.8 million US children, according to a report from the National Center for Children in poverty at Columbia University.

The center also found that about 22% of children live in poor families, with income below $24,000 a year.

“Far too many American children live in economically insecure families, and this serious threat to our nation’s future does not get the attention it deserves,” said the center’s director, Ren√©e Wilson-Simmons.

Other studies show that public assistance helps keep Americans out of poverty. An analysis of public assistance programs by Jake Grovum, staff writer at Pew Charitable Trust, found that without food stamps another 8 million Americans would live in poverty, including more children.


Friday, January 30, 2015

Isn’t It a Pity? The Real Problem with Special Needs

From olliBean.com

By Torrie Dunlap
CEO, Kids Included Together

January 15, 2015

We love this TEDx Talk from our friend, Torrie Dunlap, at Kids Included Together. Torrie graciously shared the transcript to make this video accessible.


This talk was given at a local TEDx event, produced independently of the TED Conferences. Kids with special needs are marginalized in our communities, and we are doing it with the best of intentions. Inclusion expert Torrie Dunlap shares why we need to change our thinking when it comes to special needs.

Transcript

In the early 90s I was a student on this very campus, and actually, on this very stage. I was a drama major who had a dream to change the world through arts education. The world, however, had something different in mind. In one of my first professional theater jobs I was directing a production of the musical Joseph and the Amazing Technicolor Dreamcoat.

I don’t know if you’ve seen it but there are a lot of kids in that show. We held auditions and there was a very lovely middle schooler, with a really pretty voice. She happened to use a wheelchair. I remember casting her in the show and feeling so good about myself for casting someone with special needs in the show. How great for her, and how amazing for the audiences who would see someone using a wheelchair in a production. I spent a lot of time feeling good about myself for this.

We had some logistics to figure out, so the production team and I put our heads together and we created a set design with the standard bleacher seating and we made a special cut out for this young girl so she would slide right in with her chair and sit next to the other kids. We hadn’t told her about this and on the day we moved into the theater I could not have been more excited. The theater was old and not very accessible, and so three dads had to hoist the chair with her in it up onto the stage. I proudly showed her the cut out where she would sit in her wheelchair. I will never forget what happened next.

She looked up at me and said, “How come I don’t get to sit on the bleachers like the other kids?” And wow. I could not believe how badly I had missed the boat. I was so caught up in the visual and the good feelings I had about doing this that I had not even considered that how she participated was her choice--and I had not even asked her.

Without intending to, I had marginalized her. I had turned her from a 7th grader who likes singing and wants to be in a play with her friends into some kind of poster child for disability representation in the arts. I never forgot this experience, and how much I learned that day. In fact, it informed the rest of my career.

After many years of teaching kids with all kinds of differences and abilities I took a leap of faith and became a part-time program coordinator at Kids Included Together, a small grassroots non-profit in San Diego that was teaching child care and after school programs how to meet the needs of all kids. Nine years later I became the CEO and we have now done this work in 45 states and 10 countries and we teach thousands of people each year.

I have learned in my close to 20 years of immersion in this field that we can overcome our fears and the barriers that separate children with and without disabilities by changing our mindset. In 2011 the World Health Organization and the World Bank published a report on disability. The report states children with disabilities are among the most marginalized children in the world. I believe that a reason why as a society we have not embraced children with disabilities as full participants in our schools and communities is the limitation of our own mental models around disability.

We have moved from hiding and institutionalizing children, to a world where kids with disabilities are “special” and receive special services in special settings with special caregivers, and they--and their families--are disenfranchised from the community at large and have become their own separate community. I believe that “special” has become a euphemism for “separate.” When we create a separate, “special” places for children where their “special needs” can be met, we are teaching them that their place is over there, with people like them and not in the full community.

When young, impressionable children are taught that their needs are too great, that they are too different and that they don’t fit our very narrow definition of “normal,” this has a life-long effect on their ability to contribute positively to society. Our goal as adults, parents, teachers and child care providers, is to help kids grow up to be confident, happy adults who make a positive contribution to the world.

But, when it comes to kids with disabilities we have missed the boat. The disruption that’s needed is in conceptual models of disability. In the field of disability studies they are known as the “medical model” and the “social model.” The medical model, obviously coming out of the medical community, but with widespread adoption outside of it, views disability as a problem that needs to be cured or fixed. People who have disabilities are perceived as sick and that only experts can determine what treatments are needed.

It’s not that cures or medical interventions are necessarily a bad thing, but when we use the medical model as our way of perceiving disability, we view children who have them as a problem that need fixing, and we separate them from their peers without disabilities. This is why we often lead with pity--we feel sorry for people who are broken and need fixing, and we feel charitable by helping them and this is where we design “special services for special kids.” We feel good that we have done something kind for “those poor children.”

We make a lot of assumptions here that children who have disabilities have a poor quality of life, can’t learn and can’t achieve. We assume they need something different than other kids, because they are “special.” The counterpoint to the Medical Model is the Social Model of Disability. In this model we view societal barriers as the problem, and not the child. Disability is perceived not as a negative, but as neutral. In this model we view disability as something that exists in the environment and in society, and it is the failure of the environment and not the person.

In order to lessen the impact of disability on a person, we need to change the interaction between the person and the environment. And because this is TEDx and we like big, fancy words I’ll give you one more--this is the model the World Health Organization works from, and the one we use in our work at Kids Included Together. It’s called the biopsychosocial model. This model accepts that medical labels and diagnoses are part of the identity of the person and environmental barriers are also considered when looking at how disability influences a child’s ability to function in the world. It’s a more holistic approach.

You may see your own perspective reflected in one of these models, or you may feel like you have never thought of it before. But, even if we haven’t been confronted with making a conscious choice to adopt a model, we all have one. We create our own mental models to make sense of the world. A mental model is a deeply engrained set of beliefs based on assumptions, generalizations, media images, our own experience or lack of it. Basically, how we think about stuff. Think of it as your internal personal algorithm.

When faced with a decision, before you are even conscious of it, your mental model goes to work. For many of us, our mental model around disability reflects the medical model--something to fear, something to fix, something to feel sorry for, and that we can feel good when we help less fortunate people. But, what happens when we consciously change our internal model and view disability as neutral, and the environment as a factor. What if we see children with disabilities first as children, and not a diagnosis or as “special?”

Here is a very typical community event--it’s a rodeo for “Challenged Buckaroos.” A special rodeo for children with disabilities. The event is designed for children – no special adaptations for disability are needed or offered that I can tell, and the marketing materials say that this is a chance for some “very special kids to meet real cowboys and cowgirls while being cheered on by their fans.” The piece in the newspaper includes a quote from the organizer about how “rodeo fans can give a great day to some great kids.” What do you think? Medical model or social model?

What assumptions are we making about children and their disability in an event like this? Why do children who have a disability label need their own special rodeo? What message are we sending to kids when we create a separate rodeo just for them? What if the rodeo committee held a children’s event and invited all children--regardless of their ability to attend. Picture what a day at the rodeo with all kinds of kids there could look like. They would make sure that children who needed it had extra assistance, but would anything else really have to change? What do we gain by building a community where everyone belongs?

Here is another one--and I know I am going to get some pushback on this one- and it involves someone many of us hold near and dear to our hearts--Santa Claus. I was at the mall one November day and I saw this poster for a special Santa Claus photo session for special kids. I know these events are happening all over the country, and I bet most people feel good about them. It seems like a nice thing to do, right? Making sure that everyone who wants to can visit Santa. It’s called Caring Santa.

For me, this raises a lot of questions--and I hope it does for you too--isn’t Santa always caring? Would you want your child sitting on the lap of Uncaring Santa? What are the barriers to access for Santa? These events are targeted to families who have children with sensory sensitivities, but I wonder if there is a way to meet the needs of all kids in a way that actually enhances the experience for everyone.

What do we gain by keeping kids separate? What do we lose out on when we do? There are a lot of milestones in a child’s life, for kids who celebrate Christmas a visit to Santa is one of them. For most high schoolers the Prom is a rite of passage. Over the past few years I have seen events called “Special Needs Proms” pop up. These are events that invite teens who receive special education services to attend a separate prom together with other teens from other area high schools. All of the dresses, tuxedos, limos are donated to the teens. Teens without disabilities volunteer at the event as “hosts” to the honored guests and receive their community service credit. The parents, family and friends of the kids view the prom from in real time a live video feed.

I know that as adults we worry about, and we care about kids who might get left out of the prom experience, because they are different. High school is a tough place. But, what if we instead looked through a different lens and put our energy toward making sure that every high school prom is welcoming and inclusive to all the students who attend the school? We need to examine what the actual barriers to prom are for teens with disabilities. Is it really the cost? Is it the lack of someone to be a date? Are there physical accessibility barriers? I wonder what underlying message we are sending, both to the teens with disabilities who may hear us say that they aren’t welcome at a school event on their campus with kids they have gone to school with, and also to the volunteer teen “escorts” and what message we are sending to them about pity and helplessness and separation by ability.

And, really, would you have wanted your mom watching you at your prom through a video feed?

I want to introduce you to my friend Addie. She’s 8 now, and in 3rd grade, but I want to tell you about her school music performances in 1st and 2nd grade. Addie uses a wheelchair and also does not use her voice to communicate. During the performance Addie sat 20 feet away from her peers, on the other side of a wall with her aide. The way she was made a part of it was by the decorations the class put on her wheelchair. So, there she is in her adorned chair far away from her peers. You can see which model is in play, right?

Fast forward to 2nd grade and it’s time for a music performance. Addie has a teacher using a different mental model and this time she is on stage, next to her peers and she has a meaningful role to play in the show. They had used Addie’s recorder to capture her sister Emily’s voice saying “Thank you for coming to our performance” and after the few songs are over, Addie hits a button that starts the recording. Huge beaming smile on her face. The teacher looked at the barriers and overcame them- and it wasn’t that difficult.

This is the opportunity we have. And it is important. Disability is going to touch all of our lives at some point, by disease, by accident, by the natural process of aging and living longer. And we probably all have friends or family members who experience some kind of disability. How do we want to be included in our communities? How do we want our children to be regarded? As something fragile, broken and “special” or as people who have a right to belong in our communities?

I believe that when we examine our own mental models toward disability, we won’t default to pity and charity, but will focus our efforts on making our society accessible to everyone, and everyone will benefit.

Thank you.


About Torrie Dunlap

Torrie Dunlap is a nationally-recognized thought leader in the field of inclusive education and recreation. She has delivered keynotes and trainings on inclusion around the United States and in Europe, and she has been published in textbooks, professional journals and trade magazines. She is a regular contributor to the advocacy website Think Inclusive and is a frequent guest host on the online radio program The Inclusive Class.

Dunlap supports other organizations that promote inclusion by serving on the board (Vice Chair of Unified Theater in Hartford, CT), or as an advisor (Adaptive Design Association in NYC and the youth-led inclusion campaign I Am Norm). At KIT, she leads a staff team of 25 “Inclusionistas” who teach over 25,000 people a year, changing attitudes toward disability and providing best practices training using a blend of live workshops and innovative technology.

She is a Certified Professional in Learning and Performance and in 2013 was selected as a Social Innovation Fellow at Stanford’s Graduate School of Business.

Efforts Underway To Fully Fund IDEA

From Disability Scoop

By Shaun Heasley
January 28, 2015

Lawmakers in Congress are renewing efforts to ensure that the federal government lives up to its promise to fully fund special education.

Bills introduced in the U.S. House and Senate call for the
federal government to dramatically increase funding for
special education services. (Thinkstock)

A bill introduced Tuesday in the U.S. House of Representatives calls for Uncle Sam to increase funding for the Individuals with Disabilities Education Act incrementally.

Congress committed to pay 40 percent of the cost — a level that is considered to be full funding — back when IDEA first became law in 1975, but has never lived up to that threshold and currently covers just 16 percent. States and localities are left to pick up the remainder of the tab.

Under the proposed IDEA Full Funding Act, the federal government would increase spending over a decade, ultimately footing 40 percent of the nation’s bill for special education.

The legislation introduced this week comes with bipartisan support. Co-sponsors of the measure include U.S. Rep. Jared Huffman, D-Calif., Rep. Chris Van Hollen, D-Md., Rep. David McKinley, R-W.Va., Rep. Tim Walz, D-Minn., Rep. Chris Gibson, R-N.Y., and Rep. Dave Reichert, R-Wash.

“Forty years ago, the government committed to supporting our students and the teachers who work to help every American child reach their full potential,” the lawmakers said in a joint statement. “This legislation will guarantee funding increases for IDEA to ensure that our schools fulfill the promise of a first-class education for every child.”

A similar bill was introduced earlier this month in the U.S. Senate by Sen. David Vitter, R-La.

In years past, lawmakers have also brought forth legislation to fully fund IDEA, but the measures have never gained much traction.

Thursday, January 29, 2015

Treatment Restores Sociability in Autism Mouse Model

From UCLA Health Sciences
via ScienceDaily

January 22, 2015

Summary: Researchers have treated mice that mimic human autism with a neuropeptide called oxytocin, and have found that it restores normal social behavior. In addition, the findings suggest that giving oxytocin as early as possible in the animal's life leads to more lasting effects in adults and adolescents. 

Researchers have treated ASD mice with a neuropeptide called
oxytocin, and have found that it restores normal social behavior.

Among the problems people with Autism spectrum disorders (ASD) struggle with are difficulties with social behavior and communication. That can translate to an inability to make friends, engage in routine conversations, or pick up on the social cues that are second nature to most people.


Similarly, in a mouse model of ASD, the animals, like humans, show little interest in interacting or socializing with other mice.

One drug, risperidone, works in both humans and mice with ASD to treat other symptoms of the disorder -- including repetitive behaviors--but no medication has been found to help socialization.

Now researchers at UCLA have treated ASD mice with a neuropeptide--molecules used by neurons to communicate with each other--called oxytocin, and have found that it restores normal social behavior. In addition, the findings suggest that giving oxytocin as early as possible in the animal's life leads to more lasting effects in adults and adolescents. This suggests there may be critical times for treatment that are better than others.

The study appears in the January 21 online edition of the journal Science Translational Medicine.

Mouse models of neuropsychiatric diseases provide a platform for understanding the mechanisms behind disorders and development of new therapies, noted Daniel Geschwind, a UCLA professor of psychiatry, neurology and human genetics, and senior author of the study.

In 2011, Geschwind and his colleagues developed a mouse model for ASD by knocking out a gene called CNTNAP2 (contactin-associated protein-like 2), which scientists believe plays an important role in the brain circuits responsible for language and speech. Previous research has linked common CNTNAP2 variants to heightened autism risk in the general population, while rare variants can lead to an inherited form of autism called cortical dysplasia-focal epilepsy syndrome (CDFE).

It's known that the oxytocin is involved in regulating various aspects of social behavior. Among its other roles, oxytocin neurons in the brain's hypothalamus interact with several other brain regions, including the amygdala, hippocampus, and frontal cortex, where they influence such behaviors as fear, memory, and social behavior.

"The oxytocin system is a key mediator of social behavior in mammals, including humans, for maternal behavior, mother-infant bonding, and social memory," said Geschwind, who holds UCLA's Gordon and Virginia MacDonald Distinguished Chair in Human Genetics and is the director of the Center for Autism Research and Treatment at the Semel Institute for Neuroscience and Human Behavior at UCLA. "So it seemed like a natural target for us to go after."

In the ASD mice, the researchers found a decrease in the number of oxytocin neurons in the hypothalamus and, overall, a decrease in oxytocin levels throughout the brain. But when they administered oxytocin to the ASD mice, sociability, defined as time spent interacting normally with other mice, was restored.

Then, using a second strategy, the researchers also found that by giving the mice melanocortin, an agonist (which binds to specific receptors on a cell to activate it) caused a natural release of oxytocin from brain cells, which also improved social deficits.

"The study shows that a primary deficit in oxytocin may cause the social problems in these mice, and that correcting this deficit can correct social behavior," said Geschwind. "We were surprised as well to discover a relationship between the cntnap2 protein and oxytocin--the absence of cntnap2 effected oxytocin neurons in the hypothalamus."

The biggest surprise, though, said Geschwind, was finding that early postnatal administration of the oxytocin led to longer positive effects upon social behavior when measured several weeks later. "This suggests that there may be critical windows of time for treatment that are better than others."

Because the autistic mice share similar symptoms and behaviors with people on the autism spectrum, the model offered a promising way to test new therapies that may one day help people with autism. The next stage, said Geschwind, is determining how limited a treatment can be given during early development of the animal, refining the window of maximum therapeutic effect with the hope this therapy may someday be applicable to humans.

The study was funded by the National Institute of Mental Health (R01 MH081754-02R, NIH/NS50220); the NIH Autism Centers of Excellence (HD055784-01; 5R01-MH081754-04); Simons Foundation Autism Research Initiative; Autism Speaks (7657); NIH/National Institute of Neurological Disorders and Stroke (R01 NS049501 and R01 NS074312), and the Brain Disorder Award from McKnight Foundation.

Journal Reference

O. Penagarikano, M. T. Lazaro, X.-H. Lu, A. Gordon, H. Dong, H. A. Lam, E. Peles, N. T. Maidment, N. P. Murphy, X. W. Yang, P. Golshani, D. H. Geschwind. Exogenous and evoked oxytocin restores social behavior in the Cntnap2 mouse model of autism. Science Translational Medicine, 2015; 7 (271): 271ra8 DOI: 10.1126/scitranslmed.3010257

Growing Up on Easy Street Has Its Own Dangers

From The New York Times' Blog
"Your Money"

By Ron Lieber
January 9, 2015

When Thomas Gilbert Jr. was arrested on Monday and charged with killing his wealthy father with a gunshot to the head, the rubbernecking and tut-tutting began almost immediately.

The pair had argued about financial issues in the past, according to police. Tabloid reports suggested that there had been a disagreement over the 30-year-old’s allowance before he apparently pulled the trigger.

So Twitter responded as Twitter does. He was a “trust fund kid.” The “most spoiled brat.” The whole affair was “morbidly disgusting.”

But at the same time, parents all over my own social media feeds and in out-loud discussions throughout the week were having a more searching conversation. How does it come to pass that a 30-year-old Princeton graduate still gets pocket money from his parents? What, if anything, went wrong in the way his parents raised him?


And, is there something about the environment that his mother and hedge-fund-running father raised him in that may have itself been damaging?

We still don’t know very much about this one stranger and his mental health. Nor are we likely to ever get a full picture of his family, its values or the relationship between the father and the son.

But in the last 15 years or so, academics have spent an increasing amount of time studying the affluent and what can ail them, and there is an emerging consensus that their children often have higher rates of depression and anxiety and elevated levels of substance abuse and certain delinquent behaviors.

The questions that these scholars are now turning to revolve around precisely why these bad things happen and how to make them stop.

Before you roll your eyes and mime the playing of violins, let us dispense with the nasty term “rich people problems.” The well-off are human, too, and if some of their children are hurting, it’s indecent to mock or ignore them. And studying and caring about troubled teenagers in the suburbs or private schools does not and should not preclude devoting a disproportionate amount of attention and public resources toward people who have much less.

In fact, it was the study of poverty that led a psychologist named Suniya Luthar, now a professor at Arizona State University, to some of the first findings in this area in the late 1990s. Fully expecting to find more troubling trends among children in lower-income families, she used data from a more affluent group as a comparison.



Thomas Gilbert Jr. was arrested on January 5, and charged in the
shooting death of his father, Thomas Gilbert.

JEFFERSON SIEGEL / NEW YORK DAILY NEWS

What she found in a 1999 study and several more since, however, was a surprise. Using a variety of data that included families with median household incomes of about $150,000, she found that the adolescents in higher-income families had higher rates of substance abuse of all kinds than those in lower-income ones. This makes a certain amount of sense, since they can afford the drugs, the vehicles to go buy them and the fake IDs that help with the procurement of Stoli and Jägermeister.

But there was more. The more affluent suburban youth stole from their parents more often than city youth with less money and were more likely to experience clinically significant levels of depression, anxiety and physical ailments that seemed to stem from those mental conditions. These things began emerging as early as seventh grade.

Were these results attributable to parenting? If a single parent or both parents work (or have faith in the safe suburban neighborhoods), then their children are left to their own devices after school. Or maybe the number of hours parents needed to spend working to make above-average amounts and maintain a nice life in an upper-middle-class community was the problem. Or it could have been pressure from the parents to achieve levels of success similar to their own that was causing more than a few adolescents to buckle.

Ms. Luthar said that she understood how hard it could be as a parent to resist pressuring children. After all, many such parents enjoy their fulfilling, prestigious jobs and have a wide network of friends from their top-tier educational institutions. Most of them desperately want the same things for their own children, and why wouldn’t they? “This is the trap we can fall into,” she said.


But it was also possible that there was something about the affluent communities themselves that was contributing to the troubles seen in many children who lived there. In 2012, Terese J. Lund and Eric Dearing published a study that suggested that the environment mattered an awful lot too.

What they found was that middle-class children who lived in middle-class neighborhoods had less depression and anxiety and fewer incidences of delinquency than middle-class children who lived in more affluent neighborhoods. The surroundings seemed to matter.

Still, even if the community is the trigger, that doesn’t mean parents don’t also have influence. “It might be because of something that happens in families,” said Mr. Dearing, an associate professor at Boston College. “They make social comparisons and then put exceptional pressure on adolescents.”

Mr. Dearing allows for the possibility that the data showed what they showed because people in affluent communities were more tuned into mental health issues and thus more likely to report them to researchers. Still, he said, that didn’t mean they were exaggerating their hurt; it just meant that health professionals also ought to help lower-income people recognize symptoms of depression and anxiety and find ways to treat them.


Given that the field of study is relatively new, there is still much that the scholars do not know. There is not a lot of great long-term data to show what happens to most affluent children by the time they are Thomas Gilbert Jr.’s age, for instance. (Entities with funding aren’t exactly lining up to pay for extensive studies of rich kids.) Most of the studies have been mostly about white people.

And, it isn’t completely clear how best to support parents — mothers especially, who still often have disproportionate influence — in their efforts to reduce the outsize incidence of the troubles that have bedeviled affluent adolescent youngsters so far.

Still, Ms. Luthar says she is reasonably sure about what parents should avoid.


“Our research consistently found if there is one thing related to problems of all kinds, it is being highly criticized by your parents,” she said. “It is one of the most powerful risk factors.”

Given the emerging research about the importance of ecology, the information we do have suggests you’ll want to pick your community carefully and conduct a thorough values audit before you move in. Once you get there, try hard to remember that you have not entered a race or a contest. Instead, you’ve begun a long family journey whose endpoint is supposed to be happiness and fulfilling work and relationships.

Finally, be aware of what the data shows. It doesn’t mean that children in wealthier families are worse off altogether; far from it. But they are at their own sort of risk.


“The most important thing,” Ms. Luthar said, “is to keep ourselves and our children from getting swept up in the movement towards more being better and the idea that I can and therefore I must.”

Wednesday, January 28, 2015

The Three Essential Parts of an IEP Goal

From Parents Have The Power
to Make Special Education Work

By Judith Canty Graves and Carson Graves
January 22, 2015

The Individualized Education Program (IEP) is the cornerstone of special education. The individual goals created for a student on an IEP are the way that the student makes progress toward the Free Appropriate Public Education (FAPE) guaranteed by special education law. An effective goal is both specific to the student and measurable by objective standards.

Our experience is that it is up to parents to help their child’s IEP Team understand and create effective goals for their children. This requires knowing the three essential parts of an IEP goal: the current level of performance, specific, measurable milestones, and services to support attaining the goal.

The following sections describe the three questions you and your Team should be asking to create goals that are realistic and effective for your child.

What’s your starting point?

Every goal begins with an assessment of the student’s current ability in the specific skill area covered by that goal. This is called the student’s “current level of performance.” The importance of this is to establish the starting point for the goal. Knowing how far a student is below grade level, for example, helps answer the question about what kind of specialized instruction is needed and how intensively it should be given. A student who is three years below grade level in math, for example, will need more intensive math instruction than one who is only a year below grade level.

The most effective way to determine the current level of performance is through testing. In reading, the Woodcock-Johnson Test or Wechsler Individual Achievement Test (WIAT) is considered a good indicator of current performance. In non-academic areas, a psychological evaluation is an effective indicator of social-emotional or behavioral performance while a test of fine or gross motor skills can indicate occupational or physical therapy performance. More general assessment methods, such as the completion of a reading skills class or participation in a sports activity, can be helpful.

We have found that there is a definite relationship between the quality of the assessment and the quality of the goal. The less objective the assessment of the current level of performance the more vague and ineffective the goal. In IEPs where the current level of performance is simply an anecdotal description of behavior, our experience is that the resulting goal is often so vague that there is little, if any, chance of the student achieving it.

Where are you going?

The goal is the IEP’s road map for achievement. You need a specific, time-limited goal that can take your child from his or her current level of performance to a realistic higher level during the time period covered by the goal, which is usually a school year.

In their book, Writing Measurable IEP Goals and Objectives, Barbara Batemen and Cynthia Herr describe the four characteristics of a measurable goal:
  • It contains a method for measuring whether or not the goal has been achieved.
  • The criteria for measuring progress are clearly defined in the goal and do not require any information other than what is contained in the description of the goal.
  • The measurement can be validated by multiple observers. For example, if two different observers measure the progress of a goal using the criteria described in the goal, they would independently come to the same conclusion.
  • It is possible to determine how much progress a student has made toward attaining the goal at any time, such as in a quarterly report.

We have seen too many IEP goals that provide little of this information. Most are impossibly vague, contain no standards by which anyone could determine if the goal was ever achieved, and perversely, often place the responsibility for achieving the goal completely on the student without any teacher or specialist assistance.

How are you going to get there?

A goal won’t work if there aren’t services to help your child achieve it. This makes adequate services essential. The service delivery grid is the part of the IEP that specifies what services are needed to help the student achieve a goal, where and how often the services are given, and who is providing the services. Unless the grid specifies adequate time and a properly qualified person, it is unrealistic to expect a student to make satisfactory progress toward even the most well-written goal.

When examining a service delivery grid pay special attention to the the following:
  • The type of service.
  • The dates that service begins and ends.
  • Where and how often the service is provided.
  • The kind of professional responsible for providing the service. Vague references to “sped staff” are not helpful, and not even permitted in some states.

In addition to making sure that service delivery is clearly spelled out in the grid, we recommend that you have this information written into the description of the goal itself. The reason for this is that the service delivery grid often appears pages after the goal and can be overlooked by both you and your child’s service providers. The duplication also helps remind everyone that the most important part of an IEP goal is achieving it.

Putting It All Together

The three parts of an IEP goal: current level of performance, specific and measurable goal, and service delivery all need to support each other. When you know your starting point, where you are going, and how you are going to get there, then your child’s journey toward an appropriate education can be a rewarding one.

......................................................................

This article is excerpted and adapted from Chapter 7, “Writing Effective IEP Goals” in Parents Have the Power to Make Special Education Work.

Disability Advocates Sharply Critical of Plan to Ease Testing

From Disability Scoop

By Michelle Diament
January 23, 2015

As Congress looks to reauthorize the nation’s primary education law, advocates are blasting proposed changes they say would lead to lower expectations for students with disabilities.


At a U.S. Senate hearing this week, lawmakers began the process of updating the Elementary and Secondary Education Act, now known as No Child Left Behind. Among the biggest changes under consideration are a shift in testing requirements.

Current regulations allow students with the severe cognitive disabilities to take alternate assessments as opposed to the general, grade-level tests required of most students. Only 1 percent of all students — or roughly 10 percent of those with disabilities — can be counted as proficient by schools for taking these less-complex exams.

However, a draft proposal from U.S. Sen. Lamar Alexander, R-Tenn., would lift the cap on the number of kids who could take alternate assessments.

In a letter this week to Alexander — who chairs the Senate’s education committee — advocates called the plan “unacceptable.”

“(The proposal) could allow schools to take millions of students with disabilities out of the general assessment, which would also often mean off track for a regular high school diploma — something that could happen as early as 3rd grade,” reads the letter signed by 25 disability advocacy groups as part of the Consortium for Citizens with Disabilities.

“Unfortunately, the provisions in your draft would lower expectations for these students and ultimately limit their ability to become fully economically self-sufficient.”

The idea of opening up alternate assessments on a broader scale is particularly troubling because most students with disabilities are capable of grade-level work, said Lindsay Jones from the National Center for Learning Disabilities who helped draft the letter to Alexander.

With school curriculums largely tied to the bar set by standardized tests, Jones said that kids with disabilities would likely be provided less access and subject to lower expectations if schools are able to give alternate assessments in greater numbers.

“I think everyone agrees we need an alternate assessment for kids with the most significant cognitive disabilities. For certain students it’s appropriate, but for the vast majority — 90 percent of students with disabilities — it’s not,” Jones said.

Meanwhile, disability advocates also said they’re dismayed that Alexander’s plan is silent on modified assessments — which were intended for children with disabilities considered too advanced for the alternate tests but unprepared for typical exams. The tests have largely been abandoned by states after advocates say they were widely abused.

Lawmakers said they are eager to move forward quickly with a revamp of No Child Left Behind and another Senate hearing on the matter is scheduled next week. Alexander has indicated, however, that he is reluctant to put too many demands in place at the federal level.

“While the federal government has a very special role in ensuring that our students do not experience discrimination based on who they are or what their disability might be, Congress is not a national school board,” Alexander said at the hearing.

Tuesday, January 27, 2015

The Stigma of Autism: When All Eyes Are Upon You

From the Interactive Autism Network
of the Kennedy Krieger Institute

By Marina Sarris
ian@kennedykrieger.org

January 20, 2015

What parent of a child with autism hasn't had one of those moments in public? Your child is screaming, spinning or making noises, and you're on the receiving end of disapproving stares or outright hostility from The Annoyed. "Control your child," The Annoyed says coldly. Maybe he assumes your child lacks discipline; maybe he recognizes the disability but blames you for subjecting him to such behavior.

The Annoyed can be a stranger, an acquaintance or cousin Pat.

At that moment, you feel the stigma that societies around the globe attach to autism. In different ways and to different degrees, people in many countries view autism as a source of disappointment, annoyance, shame or worse. According to some researchers, stigma may keep families from seeking a diagnosis and services for their children, from participating fully in their communities, and from enjoying the same quality of life as their neighbors. Simply put, stigma influences public health.1

Stigma is born of culture, so it may look different depending on whether you are living in South Korea, Australia, the West Bank, Japan or the United States. Pope Francis recently told Roman Catholics worldwide to help with "breaking down the isolation and, in many cases, the stigma burdening people with autism spectrum disorders, and just as often their families."

The shame and isolation experienced by people with autism and their families is similar to that experienced by others whose differences set them apart. But autism has some unique characteristics that have created an almost perfect storm for shame and rejection.

In more serious forms, autism often involves "extremely disruptive antisocial behavior," wrote Australian sociologist David E. Gray.3 Some with autism may flick their fingers repeatedly, hit, scream, or hurt themselves. They may fail to make eye contact or speak. They may violate other people's personal space, causing fear and discomfort. Yet they look just like everyone else, making their behavior doubly suspicious to the uninformed. 

"It is this combination of pervasive disability and apparent physical normality that gives the stigma experienced by families with autistic children its unique quality," Mr. Gray wrote in 1993.3

People with autism alone usually do not have identifiable facial characteristics, such as in Down Syndrome, nor do they typically use devices such as wheelchairs or canes to alert others to the presence of a disability. As a result, their unusual behavior may be mistaken for terrible parenting, a dangerous lack of self-control, or mental illness. That may increase the burden of stigma.

One Israeli study, for example, found that caregivers (mostly parents) of people with autism reported feeling more stigmatized than caregivers of people with physical or intellectual disabilities.4

Autism: The Early Days

Eustacia Cutler's daughter was diagnosed with autism less than a decade after it was first described by a psychiatrist in 1943. Her husband, thinking his strange and silent toddler either "retarded" or "insane," wanted to put the little girl in an institution. That may seem surprising today, but in the 1950s, many American children with developmental disabilities were sent to such places, away from their families and communities.

Ms. Cutler insisted on keeping her daughter at home, where she received intensive therapy and schooling. In 1960, Ms. Cutler toured an institution for children with severe disabilities and deformities, and this time even she flinched. She recalled the tangle of emotions over what she had seen:

"However intelligent I think I am, however charitable and reverent of life, lodged deep in my mindless dreams is a clammy anxiety over these poor beings. Fearing the very sight of them may cause some horrid contamination, I, too, want them shipped off. Out of sight."5

Three years later, the sociologist Erving Goffman would define the concept of stigma, in a way somewhat similar to Ms. Cutler's description. He noted that stigma originated with the ancient Greeks, who would, quite literally, brand someone to identify him as a slave, traitor or criminal.6 Stigma is a "deeply discrediting" feature that makes the person who has it "tainted" and "discounted," he wrote in Stigma: Notes on the Management of Spoiled Identity.

"By definition, of course, we believe the person with a stigma is not quite human." So-called normal people distance themselves from the stigmatized – and those associated with them.6 The stigma of a disability could spread to the person's family, almost like an infection.

Stigma Now

That was 50 years ago. What is stigma like in the 21st Century?

It depends on where you happen to be. A Palestinian mother on the West Bank described the family reaction to her son with autism: "Some of the people from my family were understanding. Others were not. They were telling us to get rid of him. To get rid of him! [They said], 'Why are you taking care of him?' That is how some people think. When he got sick, they kept telling us, 'Why are you even spending money on him?'"7

Another parent on the West Bank described the public reaction: "It is very difficult to walk with your disabled child in the street. Everyone leaves what they are looking at or doing and starts watching your kid. You feel like you are the star of a puppet show."7

In a 2011 study, a research team that included Drs. Young Shin Kim and Roy R. Grinker found several surprising things about autism and stigma in South Korea. First, the autism rate was 2.6 percent, the highest reported from any country. But even more puzzling was the fact that two-thirds of the children with ASD were undiagnosed and untreated.8

The researchers noted that stigma may keep families from pursuing autism diagnoses and treatment. "…Koreans consider autism to be a stigmatizing hereditary disorder; autism (chap'ae) impugns the child's lineage on both sides and threatens the marriage prospects of unaffected relatives. As a result, autism is often untreated, misdiagnosed as attachment disorder, or unreported in records."8

Attachment disorder is a social interaction problem caused by neglect in early childhood. Many Korean mothers seem to prefer the attachment disorder diagnosis, even though it places blame for their children's condition squarely on them, according to a research review by Dr. Grinker and others.9 Many Koreans believe attachment disorder to be more treatable than autism and, unlike autism, it does not stigmatize the entire family, according to that review.9

Regardless of what it's called, any kind of "disorder" may seem stigmatizing.

The Stranger: What it Means to be Different

Schools in Japan began offering special education for students with developmental disabilities in 2007, according to a study in Social Work. Doing so was fraught because of the premium Japanese culture places on fitting into society and interdependence. Many parents and teachers believed labeling a child as different and needing special education could disrupt his relationship with other children, exposing him to social harm and henken (prejudice or stigma). 

"In summarizing Japanese cultural responses to 'difference,' one teacher remarked, 'This is a society where you are called 'stranger' if you are a little different from the others.'"10

The study described how teachers at one Japanese school engaged in a very elaborate dance to get parents to accept extra help for students with learning disabilities. A special educator slowly and gently worked to cultivate relationships with parents, who were reportedly fearful of henken. One mother did not want the special educator to speak to her in the hallway, lest other parents deduce that her child was different. 

"Another mother noted the particular stigma attached to autism: "If there is an incident, we often hear [the media] say something like 'the darkness of kokoro'" (heart and mind) with autism.10

Labeling: Us vs. Them

Parents in other countries also struggle with whether to have their children labeled with an autism spectrum disorder (ASD). In Great Britain, researchers Ginny Russell and Brahm Norwich studied parents who accepted an ASD diagnosis for their children, along with parents who deliberately avoided a diagnosis. The parents in the latter group had been told by professionals that their child might have ASD, but they resisted having their children assessed and "labeled."11

The British study noted that many parents face trade-offs when having their child diagnosed. The diagnosis may invite stigma, prejudice and the loss of a parent's feeling of "normalcy." On the other hand, a diagnosis can open doors to therapies and educational services that may improve the child's symptoms and quality of life.

The avoiders – the British parents who didn't want their child diagnosed – often cited stigma and rejection as a major concern, not unlike their Japanese counterparts. One parent explained, "When you apply perhaps a medical label it all seems to be, to the outside world it seems to be a lot more serious, a lot more scary… they start thinking, oh well, maybe I don't want my child to play with him." Some worried that society was labeling as "abnormal" traits that were merely eccentric or different.11

Reframing Autism and Stigma

The parents of diagnosed children generally worked to reduce the stigma of ASD, according to Russell and Norwich. When their child was behaving "inappropriately," for example, some would explain that he has autism or that his brain was wired differently. They encouraged other parents to seek assessments for autism. Some also focused on their child's strengths. One parent described how she grew to marvel at the way in which children on the spectrum think, and "how fantastic they are."

Efforts to de-stigmatize disability have led to changes in the language. The phrase "special needs" takes the focus away from the "deficits" of a disability.11 British autism expert Simon Baron-Cohen, among others, wants to replace autism spectrum disorder with autism spectrum condition because condition is "less stigmatizing." 

It also "reflects that these individuals have not only disabilities which require a medical diagnosis, but also areas of cognitive strength," they pointed out.12

Oftentimes, those seeking to de-stigmatize a group will focus on how similar they are to "normals," to use a phrase from Dr. Goffman. Including children with special needs in "regular" classrooms may foster the kind of interactions that reduce stigma. In Martha's Vineyard circa 1900, deaf residents apparently experienced no stigma or isolation from hearing residents. A form of hereditary deafness was so common on that Massachusetts island that hearing residents routinely learned and used sign language with their deaf neighbors, according to an article in Social Science & Medicine.13

In the case of Asperger's Syndrome, a high-functioning form of autism, that de-stigmatization effort may also involve pointing out the advantages of having Asperger's. For example, some advocates point to brilliant historical figures such as Albert Einstein, whom, they speculate, may have had traits of Asperger's. (Asperger's was not identified as a psychiatric diagnosis until 1994.)

As a result, Asperger's has become associated with intelligence or technical prowess in some quarters. In other places, it still carries a stigma, but less than that attached to classic autism. A 2013 study of more than 500 health care providers and educators in Australia found that they believed an autism diagnosis to be more stigmatizing than Asperger's. Half of them opposed plans to combine Asperger's and autism into a single diagnosis of autism spectrum disorder; some cited increased stigma for people with Asperger's as a reason.14

Autism as a Natural Variation 

"I am a Proud Autistic. – Tito Mukhopadhyay"15

Some adults with ASD have led a neurodiversity movement that celebrates autism as a natural variation of the human condition and opposes efforts to cure it. These advocates prefer supports and accommodations for people with ASD, rather than treatments that would erase harmless autistic behaviors.16

As professor Ralph J. Savarese explained in Disability Studies Quarterly, neurodiversity means "a willingness to make room for difference as difference (not pathology)."17

The Mukhopadhyays

Some neurodiversity advocates with milder forms of autism have garnered media attention, but what about those with severe autism? They appear in the mainstream media most often when they have been given the opportunity to demonstrate extraordinary skills – or to challenge preconceptions of autism.

The poet Tito Mukhopadhyay was diagnosed with severe, nonverbal autism in India in the 1990s. His mother, Soma Mukhopadhyay, taught him to communicate through writing, by using her own style of teaching. Mother and son have been the subject of television shows, articles and blogs.

The author of The Mind Tree and other books, Mr. Mukhopadhyay looks forward to a world beyond stigma. He writes: "One day I dream that we can grow in a matured society where nobody would be 'normal or abnormal' but just human beings, accepting any other human being –ready to grow together."18

People like Mr. Mukhopadhyay challenge or discredit the old view of autism as a "devastating global disorder that robs people with autism of their very humanity," Professor Savarese wrote in Reasonable People.19

Different, Not Less

As for Eustacia Cutler, six decades after her daughter's diagnosis, she travels around the United States speaking to parents at autism conferences. She is often accompanied by her now-famous daughter: Temple Grandin, the scientist, college professor, author and advocate, her life the subject of the eponymous HBO movie.

One statement attributed to both mother (in the movie) and daughter is that autism makes Dr. Grandin "different, not less." That is a simple, but eloquent, counterpoint to stigma.

References
  1. Link, B.G. & Phelan, J.C. (2006) Stigma and its public health implications. Lancet. 2006 Feb 11;367(9509):528-9. Abstract.
  2. Pope: Break down isolation, stigma of autism. (2014, Nov. 22). Retrieved from http://en.radiovaticana.va/news/2014/11/22/pope_break_down_isolation,_stigma_of_autism/1112005
  3. Gray, D. E. (1993). Perceptions of stigma: the parents of autistic children. Sociology of Health & Illness, 15: 102–120. Abstract.
  4. Werner, S. & Shulman, C. Subjective well-being among family caregivers of individuals with developmental disabilities: The role of affiliate stigma and psychosocial moderating variables. (2013). Res Dev Disabil. 2013 Nov;34(11):4103-14. Abstract.
  5. Cutler, E. (2004) A Thorn in My Pocket: Temple Grandin's Mother Tells the Family Story. Future Horizons.
  6. Goffman, E. (1963) Stigma: Notes on the Management of Spoiled Identity. New York: Simon & Schuster Inc.
  7. Dababnah, S. & Parish, S.L. (2013) “At a moment, you could collapse”: Raising children with autism in the West Bank. Children and Youth Services Review 35 (2013) 1670–1678. Abstract.
  8. Kim, Y.S., Leventhal, B.L., Koh, Y-J, Fombonne, E., Laska, E., Lim, E-C, Cheon, K-A, Kim, S-J, Kim, Y-K, Lee, H., Song, D-H & Grinker, R.R. (2011) Prevalence of Autism Spectrum Disorders in a Total Population Sample. Am J Psychiatry. 2011 Sep;168(9):904-12. Abstract.
  9. Kang-Yi, C.D., Grinker, R.R. & Mandell, D.S. (2013) Korean Culture and Autism Spectrum Disorders. J Autism Dev Disord. 2013 Mar;43(3):503-20. Abstract.
  10. Kayama, M. & Haight, W. (2014) Disability and Stigma: How Japanese Educators Help Parents Accept Their Children's Differences. Soc Work. 2014 Jan;59(1):24-33. Abstract.
  11. Russell, G. & Norwich, B. (2012) Dilemmas, diagnosis and de-stigmatization: Parental perspectives on the diagnosis of autism spectrum disorders. Clin Child Psychol Psychiatry. 2012 Apr;17(2):229-45. Abstract.
  12. Baron-Cohen, S., Scott, F.J., Allison, C., Williams, J., Bolton, P., Matthews, F.E. & Brayne, C. (2009). Prevalence of autism-spectrum conditions: UK school-based population study. Br J Psychiatry. 2009 Jun;194(6):500-9. Abstract.
  13. Groce, N.E. (1985). Everyone here spoke sign language: Hereditary deafness on Martha's Vineyard. Cambridge (MA): Harvard University Press, as recounted by Green, S.E. (2003) “What do you mean ‘what's wrong with her?'”: stigma and the lives of families of children with disabilities. Soc Sci Med. 2003 Oct;57(8):1361-74. Abstract.
  14. Kite, D.M., Gullifer, J. & Tyson, G.A. (2013) Views on the Diagnostic Labels of Autism and Asperger's Disorder and the Proposed Changes in the DSM. J Autism Dev Disord. 2013 Jul;43(7):1692-700. Abstract.
  15. As quoted in Savarese, E.M. & Savarese, R.J. (2010). "The Superior Half of Speaking": An Introduction. Disabil Stud Q. 2010;30(1). View article.
  16. Kapp, S.K., Gillespie-Lynch, K., Sherman, L.E. & Hutman, T. (2013) Deficit, Difference, or Both? Autism and Neurodiversity. Dev Psychol. 2013 Jan;49(1):59-71. Abstract.
  17. Savarese, R.J. (2010) Parent & Sibling Roundtable: Neurodiversity and Caregiving. Disability Studies Quarterly. Vol 30, No 1 (2010). View article.
  18. Mukhopadhyay, T.R. (2003) The mind tree: A miraculous child breaks the silence of autism. New York: Arcade Publishing.
  19. Savarese, R.J. (2007) Reasonable people: a memoir of autism and adoption. New York: Other Press, p. xiii.