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Saturday, January 19, 2019

Parents Forced to Trade Custody for Children’s Mental-Health Care

From Kaiser Health News
via Spectrum News

By Christine Herman
January 11, 2019

Toni Hoy holds a childhood photograph of her son Daniel, whom she
and her husband surrendered to the state of Illinois in 2007.

When Toni and Jim Hoy adopted their son Daniel through the foster-care system, he was an affectionate toddler. They did not plan to give him back to the state of Illinois, ever.
“Danny was this cute, lovable little blond-haired, blue-eyed baby,” Jim says.

Toni recalls times Daniel would reach over, put his hands on her face and squish her cheeks. “And he would go, ‘You pretty, Mom,’” Toni says. “Oh my gosh, he just melted my heart when he would say these very loving, endearing things to me.”

But as Daniel grew older, he changed. He began to show signs of serious mental illness that eventually manifested in violent outbursts and nearly a dozen psychiatric hospitalizations, starting at age 10. Doctors said he needed intensive, specialized care away from home — institutional services that cost at least $100,000 a year.

The family had private insurance through Jim’s job, and Daniel also had Medicaid coverage because he was adopted. But neither insurance would pay for that treatment. Exhausted and desperate, the Hoys decided to relinquish custody to the state.

If they sent Daniel back into the foster-care system, the child-welfare agency would be obligated to pay for the services he needed.

“To this day, it’s the most gut-wrenching thing I’ve ever had to do in my life,” Jim says. He went to the hospital and told Daniel, then 12, that they were legally abandoning him so child welfare could take over. “I was crying terribly. But it was the only way we figured we could keep the family safe.”

Two-thirds of states don’t keep track of how many families give up custody to help a child get mental-health services in the United States. But a study by the Government Accountability Office found that, back in 2001, families in 19 states relinquished nearly 13,000 children.

Today in Illinois, state records show that dozens of children enter state custody this way each year, despite a 2015 state law aimed at preventing it. And new data collected by the University of Maryland for the federal government finds that Illinois is not alone in failing to address this issue.

Mental-health advocates say the problem is one of ‘too little, too late.’ Even when states try to help children get access to treatment without a custody transfer, the efforts come too late in the progression of the children’s illnesses.

The advocates blame decades of inadequate funding for in-home and community-based services across the U.S. — a lack of funding that has chipped away at the mental-health system. Without that early intervention, children deteriorate to the point of being needlessly hospitalized and requiring costly residential care.

Until that underlying problem is addressed, child advocates say, the problem of families trading custody for treatment will never truly be solved.

Out of Options

Daniel grew up as the youngest of four children in Ingleside, a village north of Chicago. As a baby, he had been severely neglected in his birth family — starved and left for dead. The early trauma Daniel experienced very likely affected his brain development, doctors say.

Toni home-schooled her children until she had to return to work full time in 2005. She says Daniel, who was 10, just fell apart.

“After six weeks of being in a public-school classroom — something kids do every day — he couldn’t emotionally handle it and had his first hospitalization,” Toni says.

Daniel’s post-traumatic stress disorder and severe anxiety manifested in violent outbursts.

“He held knives to people’s throats,” Toni says. “He tried putting his fingers and his tongue in the light sockets. He broke almost every door in the house.”

In the car, there were times he’d reach over and grab the wheel while Toni was driving, to try to force the car into oncoming traffic. Other times, he would lash out at his siblings.

“At the same time, he’s a little boy,” she says. “He didn’t want to be that way. He didn’t like being that way.”

Despite Toni and Jim’s efforts to help their son with therapy and medication, the violence escalated, and Daniel was repeatedly hospitalized.

Although his doctors and therapists said he needed residential treatment, which would run at least $100,000 a year, both the family’s private health insurance and Daniel’s secondary Medicaid coverage denied coverage.

So the Hoys applied for a state grant meant for children with severe emotional disorders. They also asked for help from Daniel’s school district, which is supposed to cover a portion of the costs when students need long-term, off-site care. They were denied both.

“We were told we had to pay out of pocket for it,” Toni says.

Then, one night Daniel picked up his brother Chip, threw him down the stairs and punched him over and over before their father pulled the boys apart.

Daniel went back to the hospital for the 11th time in two years. That’s when the Illinois Department of Children and Family Services gave the Hoys an ultimatum.

“[They] basically said, ‘If you bring him home, we’re going to charge you with child endangerment for failure to protect your other kids,’” Toni says. “‘And if you leave him at the hospital, we’ll charge you with neglect.’”

“If any of our other kids got hurt once we brought him home, they would take the other kids,” Jim says. “They put our backs against the wall, and they didn’t give us any options.” So the couple left Daniel at the hospital.

Once the state’s child-welfare agency steps in to take custody, the agency will place the child in residential treatment and pay for it, says Robert Farley Jr., a lawyer in Naperville, Illinois, another Chicago suburb.

“So you get residential services, but then you’ve given up custody of your child,” Farley says. “Which is, you know, barbaric. You have to give up your child to get something necessary.”

Taking It to the Courts

The Hoys were investigated by the Department of Children and Family Services and charged with neglect. They appealed in court, and the charge was later amended to a ‘no-fault dependency,’ meaning the child entered state custody at no fault of the parents.

They didn’t know where Daniel was for several weeks, until he phoned from the group home where he had been placed to tell them he was okay.

Losing custody meant Toni and Jim could visit Daniel and maintain contact with him, but they could not make decisions regarding his care.

Over the next three years, Daniel lived at three residential treatment centers. One was five hours away by car. His parents visited as often as they could.

Toni spent months reading up on federal Medicaid law, and she learned the state-federal health insurance program is supposed to cover all medically necessary treatments for eligible children.

The Hoys hired a lawyer and, two years after giving Daniel up, they sued the state in 2010.

Six months later, they settled out of court and regained custody of Daniel, who was 15 by then. They also got the money to pay for Daniel’s care on their own.

Around the same time, Farley, the attorney, decided to take on the issue on behalf of all Medicaid-eligible children in the state. He filed a class-action lawsuit, claiming Illinois illegally withheld services from children with severe mental-health disorders.

“There [are] great federal laws,” he says. “But someone’s not out there enforcing them.”

In his lawsuit, Farley cited the state’s own data, showing that 18,000 children in Illinois have a severe emotional or behavioral condition, yet only about 200 receive intensive mental-health treatment.

As part of a settlement, a federal judge ordered Illinois Medicaid officials to completely overhaul the state system so that children get home- and community-based treatment in the early stages of their illness.

The deadline for the state to roll out those changes is this month.

Complex Problem

While these legal battles were taking place, Illinois lawmakers began their own work to ensure that parents no longer have to relinquish custody to get their children the help they need.

The Custody Relinquishment Prevention Act, which became law in 2015, ordered six state agencies that interact with children and families to intervene when a family is considering giving up custody to get access to services.

“I think the question is: Shouldn’t government be stepping in and doing their job? And they’re not,” says Democratic state representative Sara Feigenholtz. “We just want them to do their job.”

B.J. Walker, head of Illinois’ child-welfare agency, says the reasons for custody relinquishments are complex.

“If law could fix problems, we’d have a different world,” she says.

In some places, waitlists for residential treatment beds for children in crisis can be months long.

But even when beds are available, Walker says, some facilities are simply unwilling or unable to take a child who has a severe mental-health condition or a co-occurring medical condition.

Out of desperation, some parents will give up custody in the hope of getting their child to the top of the waiting list. But that doesn’t necessarily solve the problem.

As ProPublica Illinois reports, many foster children languish for months in psychiatric wards that are ill-equipped to provide long-term care, because the state is unable to place them in an appropriate therapeutic setting.

Walker’s agency is being sued for allegedly forcing children to “remain in locked psychiatric wards, causing immense harm,” for weeks or months after they’ve been cleared for discharge.

Waiting for Tragedy

Neil Skene, spokesman for Illinois’ child-welfare agency, says there are more options for families like the Hoys today than there were a decade ago. That includes a crisis-stabilization program launched in 2017 that helps families get access to services.

When the child-welfare agency is blamed for this problem, Skene says, it’s like when a pitcher comes in at the end of a losing game to save the day and gets tagged with the loss.

Some mental-health advocates agree it’s not fair to blame the state’s child-welfare agency for a problem that stems from a chronically underfunded mental-health system.

Heather O’Donnell, a mental-health advocate who works for Thresholds, a behavioral-health treatment provider in Chicago, blames years of inadequate funding in Illinois and across the U.S.

Early-intervention services are either not available or not accessible because insurance companies deny coverage.

“If these kids had leukemia or diabetes, they would’ve gotten help long before,” O’Donnell says. “It’s because they have a mental health condition that causes their behavior to be challenging and erratic. And as a society, we sweep these conditions under the rug until there’s a crisis. We just wait for tragedy.”

“What Illinois needs to put into place is a system that helps these families early on, so that these kids never get hospitalized,” O’Donnell says.

Beth Stroul, who has been studying the problem of custody relinquishment for decades, agrees. She is the lead researcher on a new study — commissioned by the federal government and carried out by the University of Maryland — that explores why the problem persists.

Stroul says other states, including Georgia and New Jersey, have passed laws and stepped up efforts to help children get treatment while in parental custody.

“But those strategies, in and of themselves, are not sufficient unless there are home- and community-based services available that provide the supports and treatment needed to keep children and families safe in the community,” Stroul says.

Family Support

Daniel Hoy is now 24 and has been out of residential treatment — and stable — for six years.

He says treatment was tough, and he would not have gotten better without his parents’ love and support. “It was never a question in my mind that my parents would always be there for me,” he says. “Sometimes it’s so hard to do it for yourself. It almost helps to know that I’m doing it for myself, but I’m also doing it for my family and for our relationship.”

Daniel now works nights for a shipping company and lives with his girlfriend and their toddler daughter in central Illinois, not far from his parents.

“I just love having a relationship with him,” Jim says. “I feel so privileged that [when] he’s having a bad day, he comes over and talks to us about it.”

Toni says, looking back, it’s shameful that families get torn apart by a system that’s supposed to be supportive.

She is grateful they made it through intact. Other families that have gone through this same thing, she says, have lost touch with their child forever. “Kids do need services,” Toni says. “But they also need the support of their families.”

This story is part of NPR’s reporting partnership with Side Effects PublicMedia and Kaiser Health News. A longer version of this story appears in The Workaround podcast. This story originally appeared on Kaiser Health News. It has been slightly modified to reflect Spectrum’s style.

200 Students, Parents & Educators Spent Two Years Thinking About How to Support the Whole Child. Here Are 6 Things They Found

From The 74 Million

By Kate Stringer
January 15, 2019

For Duke University sophomore Mila de Souza, including social-emotional learning in schools should be common sense.

By that, she means it should be second nature for schools to support students’ mental health, teach children how to work well with others, and become a place where both educators and scholars can learn to value one another’s diverse experiences.

“I feel a lot of schools are focusing on just education and making sure these students are able to pass tests, but not really teaching students how to be good citizens in the world,” de Souza said.

De Souza is one of nearly 200 students, educators, parents, scientists, and policymakers who have been considering these ideas for the past two years — and shared their expertise on social-emotional learning with the Aspen Institute’s National Commission on Social, Emotional, and Academic Development, which today published its findings.

Titled From a Nation at Risk to a Nation at Hope, the report includes six recommendations for how schools can support students, beyond academics.

Nearly 100 organizations have signed on to back these recommendations, including the National PTA, the National Education Association, and the National Governors Association. The Aspen Institute is a Washington, D.C.-based international nonprofit and think tank.

“I haven’t in my life been part of a community that has taken on something that I think is so important but does it in such a collaborative, forward-thinking, and rigorous manner,” said Stephanie Jones, a member of the commission’s Council of Distinguished Scientists and the Gerald S. Lesser professor of child development and education at the Harvard Graduate School of Education.

The commission was formed two years ago to examine the importance of and science behind social, emotional, and academic development. Since then, its members have convened panels of researchers, students, educators, parents, partners, and funders, both in person and via online conferencing, and visited schools across the country to see social-emotional learning in action. Along the way, they’ve published reports on their findings.

Social-emotional learning (SEL) is a broad term that encompasses teaching students everything from self-management to how to regulate their emotions and being mindful of the feelings of their peers. The idea is that social-emotional skills will help students be better learners and better prepared for the workplace — and research shows the benefits.

Schools that teach SEL see improved academic performance and graduation rates, and students obtain better earnings and health outcomes after graduation and into adulthood.

Related: What Is **Social-Emotional Learning** and How Does It Affect Kids?

“The bottom line is, students are emotional creatures, and so are teachers,” said Chris Poulos, a teacher-leader in Redding, Connecticut, and member of the commission’s Council of Distinguished Educators.

“If students can regulate their emotions more effectively, they’re going to learn more effectively. If teachers can regulate their emotions and understand them, they’re going to teach more effectively.”

For Linda Darling-Hammond, president and CEO of the Learning Policy Institute and co-leader of the commission’s work, this report is an opportunity to encourage a connection between research and practice.

“We know a lot now about how people learn. That is not communicated well to policymakers and practitioners,” she said. “So we have in a lot of parts of the country both policies and practices in schools that are actually at odds with how people learn.”

Here are the six recommendations from the commission:

1.) Define student success to prioritize the whole child.

Whether it’s at the school or policy level, student success should be defined not just by children’s academic abilities but also by how well they can demonstrate social-emotional skills such as working well with others, managing their time, and setting and achieving goals.

The commission recommends that states include these skills in their learning standards and that schools and districts create action plans around teaching them. Schools can use tools like school climate and culture surveys to gauge how well these practices are working.

Tacoma, Washington, one school district highlighted in the report, has done this work over the span of a decade by creating a whole-child initiative, with input from the school community and researchers at the University of Washington on how to make social-emotional learning a priority.

2.) Make the places where students learn safe and supportive.

The report recommends that schools implement restorative discipline practices and incorporate student voice to make them places where students feel heard and are safe.

Rather than filling a school with metal detectors, administrators should use social-emotional learning as a tool to increase safety by reducing aggressive behaviors and bullying. Teachers should also receive training that helps them support students across diverse backgrounds.

Having teachers instruct a cohort of students for several consecutive years, holding regular advisory meetings, and implementing mentoring programs can help students feel connected to the adults in their school.

Students can help play a more meaningful role in their learning if they have more choice in the types of academic projects they pursue or are allowed to help lead their parent-teacher conferences.

“In order for all of this to work and for students to accept social-emotional learning and succeed in schools, succeed in the workforce, and succeed in life, you just have to make the students feel wanted, and everything will follow,” said Daniel McCutchen, a Harvard University sophomore and adviser to the National Youth Commission.

3.) Instruction should teach social, emotional, and cognitive skills and be embedded in school practices.

Some schools may have one specific social-emotional learning program, while others may embed these lessons into academics. The commission said both methods are acceptable, but if a social-emotional learning program is going to be effective, it can’t just be limited to a few minutes a day or to a few grades. Adults across the school should be teaching these skills in class, on the playground, and during extracurriculars.

Related: These California School Districts Joined Forces to Bolster Social-Emotional Development, but a Study of 400,000 Kids Reveals Learning Gaps and a Confidence Crisis Among Middle School Girls

Viewing social-emotional learning and academics as separate entities is self-defeating, the commission said.

“Academic learning is powerfully enhanced by the cultivation of social, emotional and cognitive skills, like problem solving and critical thinking, and by character habits,” the report said.

McCutchen agreed: “I think that learning and emotional management are inextricably linked. You can’t learn without your emotions.”

An example of this is EL Education, a project-based model in which students learn and develop character through semester-long projects that they choose. Students work together, provide constructive feedback on one another’s work, give presentations on their projects, and recommend changes to their local communities on issues such as river restoration and park development.

4.) Adults should become experts in child development.

Teacher preparation programs should encourage such topics as the science of learning, child development, how to teach students who have experienced trauma, and how to make students across diverse backgrounds feel safe in school. Policymakers can create incentives for teacher colleges to prioritize this work, the report said.

Schools and districts should consider whether applicants have a track record in implementing social-emotional development when making hiring decisions. Licensure requirements should support these kinds of skills, and teachers should have their own social-emotional needs supported in schools.

Related: There’s Lots of Social-Emotional Support for Students, but Not for Teachers. Here Are Some Programs Looking to Change That

“You have to build a coalition of people who understand social-emotional learning and are willing to be innovative and try to integrate it into what they do every day,” Poulos said.

5.) The entire community can help support the whole child.

Parents, students, and other community members can all participate in supporting whole-child development. Parents and students can take part in advisory boards, especially around issues like deciphering their school’s climate survey results and providing recommendations for how to improve a school’s culture.

Schools can engage partners to make sure students have access to mental health services and that their nutritional needs are met. Funds should be used to hire staff who can engage these community partners. Policymakers can invest in more wraparound services at schools.

“I think that it’s not as simple as training the teachers to do this one thing,” de Souza said. “Everyone has to be on board and understand what’s going on and help students feel comfortable in the classroom.”

6.) Create a closer partnership between researchers and schools.

Sometimes, education research is published that educators never see. That’s why the commission recommends that scientists and teachers work more closely together — so researchers can share best practices and educators can give feedback on how it can be implemented in school.

One way to do this is for researchers to go a step beyond their usual research article format and write an additional summary of how their research can be used in schools.

Poulos reached out to the Yale Center for Emotional Intelligence when he wanted to measure how social-emotional learning was being taught at his high school. The researchers there provided him with a school climate survey and offered to analyze the results for him. His school also sends teachers there for professional learning to help them learn how to support social-emotional instruction.

While researchers have often been interested in making their work more applicable to real-world questions and problems, the report provides a concrete path toward doing so, said Harvard professor and commission panelist Stephanie Jones.

“I don’t think there has been a really explicit statement that that has to be the priority,” Jones said. “That’s something that’s very clear in this document.”

Friday, January 18, 2019

New Findings Could Help Explain Why ADHD Is Often Overlooked In Girls

From BPS Research Digest
The British Psychological Society

January 16, 2019

For every girl with ADHD, there are three boys with the same diagnosis. But among adults, the gender ratio is more like 1:1. That’s a big discrepancy. So what’s going on?

In 2017, Aja Louise Murray and colleagues investigated possible predictors of childhood vs. later (adolescent/adult-onset) ADHD, and they found hints that girls tend to develop ADHD at a later age than boys.

Now, a team that includes the same researchers has investigated this explicitly and in their paper in Developmental Science, they’ve confirmed it seems to be the case, which could partially explain the discrepancy in the ADHD gender ratio between children and adults.

The researchers analysed data on 1,571 children living in Zurich, Switzerland, whose teachers used a standard scale to assess symptoms of inattention and also of hyperactivity/impulsivity every year from age 7 (when the children started school) through to age 15. The two domains of ADHD were assessed separately, as previous work has found that they can develop at different rates.

When it came to inattention, most of the children (about 60 per cent of boys and girls) had low levels of symptoms between the ages 7 to 15.

However, whereas the remaining 40 per cent of the boys had persistently high inattention levels during this period, among the girls there was more variation, and generally lower symptom levels: almost a third had moderate symptoms that declined with increasing age, while the others started out with relatively serious symptoms at age 7, which then declined, but still remained above average at age 15.

For hyperactivity/impulsivity, there were also some contrasting developmental profiles between the sexes. Again, the majority of children (81 per cent of the girls and 61 per cent of the boys) started out with low levels of symptoms, which decreased even further into late adolescence.

There was also a group (13% of boys and 10% of girls), who had mildly elevated symptoms in childhood, followed by a dip around age 11 to 13, but then a rapid increase.

“This group could speculatively be characterised as ‘adolescence-triggered’,” the researchers write. Finally, there was also a group of children (24% of boys, versus only 9% of girls) who had high levels of symptoms all the way through the study period.

In other words, according to this data, more boys than girls show consistently high levels of hyperactivity/impulsivity – and inattention – symptoms from a young age, whereas proportionately more girls than boys develop high levels of these symptoms (which may lead to a diagnosis of ADHD) only after early adolescence.

Whatever the reasons for this difference, it could be relevant to the sex difference in diagnosis rates because current ADHD diagnostic criteria for children require symptoms to have begun before the age of 12. This could mean that a greater proportion of girls with ADHD, than boys, are being missed by clinicians.

(Exactly why adolescence might be associated with a sudden rise in these symptoms in some children, and especially girls, is not known – it could be to do with hormones, and/or increased social and academic pressures, the researchers note.)

“More attention should be paid to early adolescence as a period of risk for hyperactivity/impulsivity symptom onset or worsening,” Murray and her colleagues write.

And, they add: “It should be investigated whether removing the ‘onset before 12’ stipulation in diagnostic tests would help to identify more girls who would benefit from intervention.”

There is No Room for ‘Average’ Students These Days. Here’s Why That Worries Me.

From The Washington Post's Blog
"On Parenting"

By Jacque Gorelick
January 8, 2019

I’m face-to-face in the dark with my 5-year-old, a kindergartner. We’re tucked into his flannel dinosaur sheets, his soft fingers cup my cheeks as he presses his nose into mine.

“Mommy, school is hard; everything is hard for me.” Lines of concern fill his small brow.

“I know it feels that way right now, but it will get easier.” It’s a promise I’ve no business making, but it’s what the situation requires, so I lie.

I close my eyes and imagine we’re in Finland. I visualize him in a class where he gathers sticks and swings from monkey bars in an environment designed for curious, energetic 5-year-olds like him. Formal reading instruction will not begin until he’s 7, so there’s still time for playing.

I open my eyes to find his round cheeks outlined in the dim glow of his owl night light. We’re indulging in extra cuddles after a discouraging day of attempts to find high-frequency words on a wall, write sentences and use transitional words before he has learned all of his letters.

We are both unsure of his place in the American classroom of 2018.

A few years ago I left the education profession with a fair amount of disillusionment, but not before teaching dozens of students like my son: young learners still mastering basic skills such as holding chunky pencils in stubby fingers and anchoring letters to lines on a page so they don’t float away.

Typical average students.

Merriam-Webster defines average as about midway between two extremes. Not out of the ordinary: common.

In my small community in California burrowed in the largest tech hub in our nation, average is an extinct construct. Revolutionary, innovative and extraordinary are staples of the local vernacular. Where I live, and where I’m raising my children, one must be exceptional. It’s in the air we breathe, evidenced by the shiny Teslas that line our streets and the devoted STEM classrooms replete with personal MacBooks and 3-D printers.

Mixed in with the abundant resources and privilege is a message: Be exceptional or die trying.

And kids do die trying.

In the last decade, high schools in our county experienced a spike in suicide rates, prompting the Centers for Disease Control and Prevention to launch an epidemiological study. Fences were installed between the hallways of a nearby high school and the railroad tracks, because so many over-stressed adolescents were stepping in front of trains. Suicide is complex and often related to underlying mental health issues, which can be exacerbated by intense feelings of stress.

A 2013 article, “The Problem With Rich Kids,” by Yale psychologist Suniya Luthar, noted that privileged children experience serious levels of depression and anxiety at twice the national rates, noting the pressure for “high-octane achievement” as a probable factor.

[The myth of the straight-A student, and six ways to debunk it]

Tweens and teenagers of today marinate in doctored and curated images of perfection on social media feeds. They exist in a Utopian society, or so it seems. The pressure to be flawless is inherent.

Parents wade through research, TED Talks, and literature about raising healthy, resilient children in high-achieving districts. We talk the talk. We gather around nonfat lattes with cinnamon foam and scoff at the pressures our kids face, vowing to avoid setting unrealistic expectations, promising to support them, regardless of scores on their standardized tests.

But when it’s time to walk the walk, do we?

When I started teaching 15 years ago, kindergartners skipped into classrooms and dipped large brushes into paint, creating rainbows and fields of flowers on easels. They counted seeds in lemons and weighed watermelons grown in nearby gardens to work out math equations. They strung just-learned letters into “words” using phonetic spelling. They began to read, write, count and add, but if they didn’t come preloaded with these skills — if they were average — they still belonged.

These days, the average child in our schools is on precarious footing.

Thought leaders in education tout the benefit of a growth mind-set and making mistakes. Embrace imperfection. Schools host screenings of documentaries about managing angst and anxiety, at the same time cranking up the intensity in our kids’ classrooms, sending parents and students a mixed message.

Which is it: balance and self-care; or rise to the rigor?

Kindergarten is the new first grade, and middle school is engineered as a fast track to the Ivy Leagues. New curriculum sifts the exceptional from the average, often allowing the latter to struggle — all for the sake of high test scores, college acceptance rates and district accolades.

I want to tell the small child curled up next to me that his journey through education won’t be fraught with high-pressure expectations, making him feel less than. But the truth is, the changing landscape of education causes me as much trepidation as it does him. The new Common Core Standards have been criticized by educators across the country as developmentally inappropriate for K-3 students, requiring our youngest learners to perform tasks before their bodies and brains are ready.

Expectations only intensify as kids leave elementary school. According to an APA survey of middle school students, 34 percent rated grades, school and homework as their biggest stressors. Many schools have shortened or eliminated recess to allow for more core academic instruction. Administrators in my district are proposing to remove grade level math in our junior high schools. Grade level.

Average students will be tracked into one-size-fits-all, accelerated math classes, where they’ll power through a year-and-a-half’s worth of curriculum in 10 months. One factor driving their decision is the cutthroat college application process. Applicants are evaluated by the number of AP classes they take during high school, putting pressure on kids to track into advanced classes as early as fifth or sixth grade.

Education has become a high-stakes Rube Goldberg machine, propelling our kids from one academic pressure to the next with no end in sight. What has existed until now as an implied tenet, is becoming a tangible reality: Be exceptional, or be a failure; there is no middle ground.

Nose to nose in the dark with my son, his deep eyes look to mine for reassurance I can’t offer. In our demanding, airbrushed society, the bar moves ever upward. If extraordinary is our new normal, what is to become of the average child?

“Mommy, do we grow when we sleep?” To my relief, he’s moved on to questions I’m better equipped to answer.

“Every night, little by little.” I wrap my arms around him, becoming, if only for a moment, a protective shield in the disquiet.

“Am I growing?” He lengthens his slender frame and stretches his toes toward the foot of the bed.

“Yes, but take your time,” I whisper into the darkness, my lone battle cry.

Thursday, January 17, 2019

How to Help Underserved Groups Gain Access to Autism Care

From Spectrum News

By Lisa Shulman
January 15, 2019

Professionals who specialize in autism diagnosis and treatment often set up shop in specialty clinics or autism centers, typically in children’s hospitals or major medical centers. They tend to wait for children with autism to come to them, usually referred by pediatricians or concerned parents.

But this system favors families who are regular consumers of healthcare, are able to make it through the doors of specialty clinics and know how to make their voices heard. These families tend to have means and good health insurance. Appointments are booked months out, so even they have to wait for specialists who can administer a gold-standard diagnostic test, such as the Autism Diagnostic Observation Schedule (ADOS).

The process is even more difficult for families with fewer resources: It may be complicated by lack of awareness and information about autism, language barriers, lack of parental empowerment to share concerns, reluctance to question a doctor’s recommendations, providers who dismiss parents’ concerns or give alternative diagnoses, and a complex and slow diagnostic process (1).

There are more efficient, and equitable, ways to help underserved communities gain access to autism diagnosis and care.

I’d like to introduce some ways of doing so that have worked at my center in the Bronx, New York. Our facility, the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center, has had success in increasing access for families of low socioeconomic status. We regularly diagnose children with autism before 2 years of age, when interventions are likely to be most helpful.

Our population in the Bronx is among the poorest, most diverse and youngest urban population in the United States. It is 55 percent Hispanic, 43 percent African-American and 32 percent foreign-born, according to the last U.S. census.

Nationwide, African-American and Hispanic children are less likely than white children to be identified as having autism before school age (1,2,3,4).

When I present data from our clinic at conferences, people often ask: How did you get this group of children diagnosed so early? They also want to know how we get them to participate in research. Here’s how.

Community Care

First, plop your diagnostic program down in the middle of the community and stay for a long time so you become a known and trusted resource.

Our center sits in the heart of the Bronx and provides multidisciplinary diagnostic evaluations and services to children with developmental disabilities in the community. We’ve been here for more than 60 years. Each year, we see about 7,000 children, diagnose about 300 with autism and see about 1,600 children with autism for therapy, medication management or developmental follow-up.

Second, reduce the barriers to entry. Eliminate the need for physician referral. Address language and cultural hurdles, and tackle insurance-related barriers.

Meet P., an African-American boy who is 28 months old. (Throughout this piece, I’m using only the first letter of children’s names to protect their privacy.) His mother led him into the clinic by the hand, and he was screaming so loudly I could hear him from down the hall.

The registration secretary at the front desk told me that the mother had reported that a lady on the bus told her to bring her little boy here, and that we would know what to do to help him speak. We did.

Our center accepts Medicaid of all varieties, and we do not require a referral from a primary-care provider. That means families can refer themselves, removing a significant barrier to access. Also, we have a full complement of bilingual Spanish-speaking clinical and administrative staff.

Wide Net

Third, cast a wide net and bring your autism expertise to the front door. That means looking at every child who comes in for any reason or concern and being ready to identify autism.

Meet D., a 22-month-old Hispanic toddler who has not yet started to speak. His mother doesn’t see this as a problem because she knows that her son is smart and independent. When he is hungry, he goes to the refrigerator on his own and brings her the gallon of milk. D. is an ‘easy baby’ who can entertain himself for long periods of time.

The mother brought D. in because he tends to walk on his tiptoes, and she thinks he may need special shoes. She also wants to get his hearing checked because he doesn’t always respond when she calls his name.

Both P. and D. have clear signs of autism. Neither child was referred to our center to be evaluated for autism; neither parent mentioned it as a concern. In fact, it is extremely rare that we see young children who are referred because they failed the Modified Checklist for Autism in Toddlers (a screening tool for autism in toddlers) in their pediatrician’s office. Rather, parents bring their children because of a more general concern (not talking) or a different concern (toe-walking).

At our center, we like to say that we bring our autism expertise to the front door. We’re proud of this capability, because children who might otherwise be overlooked get an early diagnosis.

On the Spot

Fourth, do as much as you can the first day a person comes in. Treat an early autism diagnosis as an emergency.

Don’t make a family wait months for an evaluation with the ADOS when you can see that the child clearly meets the criteria for autism. Instead, use a diagnostic instrument that can be used on the spot, such as the Child Autism Rating Scale; talk with the parent regarding her concerns and yours; and move ahead with a plan the family is comfortable with.

Why? Because you never know when that family will come back. At our center, we have a high no-show rate for appointments. Our families tend to have many other stressors in their lives, so we rush to get a diagnosis that facilitates getting autism-specific early-intervention services in place, either at home or at the center.

When you heed these four principles, you form a partnership and a lifelong relationship with the people you serve. As a bonus, you won’t have any problems getting your community partners to participate in research.

Lisa Shulman is director of autism clinical services and professor of pediatrics at the Rose F. Kennedy Children’s Evaluation and Rehabilitation Center at Montefiore Medical Center in New York; she is also the CDC Act Early Ambassador to New York.

  1. Mandell D.S. et al. J. Autism Dev. Disord. 37, 1795-1802 (2007) PubMed
  2. Daniels A.M. and D.S. Mandell Autism 18, 583-597 (2014) PubMed
  3. Mandell D.S. et al. Am. J. Public Health 99, 493-498 (2009) PubMed
  4. Valicenti-McDermott M. et al. J. Pediatrics 161, 554-556 (2012) PubMed

Texas Needs to Find Up to $3.3 Billion to Bring Special Education Services Up to National Standards

From The Houston Chronicle

By Alejandra Matos
August 10, 2018

AUSTIN — Texas needs to find up to $3.2 billion in the next three years to provide special education services to students who were previously denied them.

Texas officials quietly devised a system to keep thousands of disabled kids
like Roanin Walker, above, out of special education
more than a decade ago.

A 2016 Houston Chronicle investigation and a subsequent federal auditfound that the Texas Education Agency illegally set up an 8.5 percent benchmark, or de-facto cap, on the number of students receiving special education services. The cap was in place for more than a decade, and was well below the national average of 13 percent.

In eliminating that cap, state officials estimate that it will cost the state billions of dollars to provide special education services to an additional 189,000 students who need them.

DENIED: How Texas keeps tens of thousands of children out of special education

The state legislature eliminated caps on special education services last year, and the federal government is requiring school districts to evaluate special needs students and offer compensatory services. As more students are identified, the state will have to pay for those resources.

TEA officials told a group of lawmakers Thursday that it estimates the state will need an additional $682 million for special education services in fiscal year 2019, an additional $1 billion in 2020 and $1.55 billion in 2021. That's more than $3.2 billion in the next three years.

"The truth is that children with disabilities have borne the brunt of spending cuts in special education, early childhood intervention and Medicaid for many years," said Cheryl Fries, a co-founder of the Texans for Special Education Reform and a parent of a child with disabilities.

"Though the price of providing those services sounds high, the cost of not providing them over the long run is much higher to society, both fiscally and morally."

It's potentially a staggering new cost for a state that has cut its share of education spending over the past decade, and it will throw a wrench in lawmakers' budget plans for next year. The legislature is already grappling with major obligations such as paying more than $2.2 billion for Hurricane Harvey recovery and a $2.5 billion Medicaid bill.

TEA spokeswoman Lauren Callahan said the agency will have a better grasp on projected costs after school districts submit their enrollment numbers to the state in October. In the 2017-2018 school year, the state budgeted $5.1 billion to provide special education services to 477,281 students, or 9.2 percent of all students, state records show.

School Districts Expect More Special Education Costs, Too

The percentage of students receiving special education is expected to climb to nearly 12.3 percent by 2021.

"Until we have real enrollment numbers, they are going to remain estimated costs," Callahan said.

Steven Aleman, a policy specialist with Disability Rights Texas, said it's difficult to know for sure how many more students will be eligible to receive special education costs, but he is certain the number will grow. The organization was one of the first to raise concerns about the cap.

"We will trust that lawmakers will take seriously their duty to provide adequate resources for each eligible student with a disability a quality education," Aleman said.

TEA has already committed more than $200 million over the next five years to increase school monitoring, hire more staff and increase family engagement as part of a federally-mandated action plan. The state is now hiring more staff members to put its plan in place. The newly-released estimates do not include the costs for students who will receive compensatory resources after being wrongly denied special education in the past.

Even if the state finds and approves the $3.2 billion in additional special education funding for districts, Guy Sconzo, former Humble ISD superintendent and executive director of the Coalition for Fast-Growth School Districts, said it won't be enough to cover all the expenses school districts will face in expanding their special education programs.

Texas does not cover the cost of educating each special education student, Sconzo said, leaving districts to make up the difference. Then there will be additional costs associated with hiring notoriously hard-to-find special education teachers and auxiliary staff members including speech pathologists, occupational therapists and physical therapists.

Schools will also likely need to create more classroom space that can accommodate special education students.

"All it does is it places another layer on local school districts, forcing them to either cut budgets to accommodate the changes or turn to local taxpayers and ask for more in local property taxes, which no one wants, including the Legislature," Sconzo said. "But every time the Legislature doesn't fund what they should be funding, there's no other place to get the money."

But Daniel McIlduff, assistant superintendent for educational support services at Cypress-Fairbanks ISD, said his district has already received some additional federal grant funds from the TEA. The district has not yet hired any additional staff members because he does not know how many eligible students will come forward when school starts on Aug. 27.

"At this point, no one has a crystal ball or knows what this will look like year one, year two or year three," McIlduff said. "Are we preparing campuses? Absolutely, we're training people on how to handle parent requests. But we don't know what will happen until we get into this process."

The $3.2 billion projections were presented to a group of lawmakers and education officials examining education finance reform. Rep. Dan Huberty, R-Houston and the Chair of the House Public Education Committee, said he has asked TEA to "give us backup, show how you got this number."

Leo Lopez, TEA's chief school finance officer, said the department estimated the increase in special education enrollment based on "conversations with our TEA staff, and what they are seeing in the field."

"Then we ran those increase percentages though our state funding model," Lopez said.

Among the students denied special education services was Roanin Walker, whose mother, Heidi, pulled him out of Humble ISD schools after officials refused to evaluate him two years ago. Heidi now home-schools the 9-year-old and has noticed vast improvement in her sensory-sensitive son's behavior. Still, he has anxiety from his time in school, when he was suspended multiple times for outbursts and labeled as a trouble-maker by teachers.

She has no plans to allow Roanin to return to public schools, especially after speaking with parents who say they are still fighting to get resources for their autistic children.

"I don't think they're equipped to deal with him," Walker said. "I'm not going to gamble his emotional health on whether the school will do what's right, especially when you still hear about what's happening."

Denied: How Texas Keeps Tens of Thousands of Children Out of Special Education

A 2016 Houston Chronicle investigation found that state officials quietly devised a system that kept thousands of disabled kids out of special education who should have qualified for services.

The denials were prompted by pressure from the state to keep the concentration of special education students to no more than 8.5 percent of all students.

The efforts to keep down the special education population, which started in 2004 but were never publicly announced or explained, saved the Texas Education Agency billions of dollars but denied vital supports to children with autism, attention deficit hyperactivity disorder, dyslexia, epilepsy, mental illnesses, speech impediments, traumatic brain injuries, even blindness and deafness, the investigation found.

The Chronicle's findings, affirmed by national education officials who later investigated, showed that the benchmark limited access to special education for children with virtually every type of disability. As of 2016, Texas schools served fewer kids with learning disabilities (46 percent lower than in 2004), emotional and mental illnesses (42 percent), orthopedic impairments (39 percent), speech impediments (27 percent), brain injuries (20 percent), hearing defects (15 percent) and visual problems (8 percent).

Special education rates had fallen to the lowest levels in big cities, where the needs are greatest.

Students who don't speak English at home were hurt the most. Those children made up 17.9 percent of all students in Texas but only 15.4 percent of those in special education. That 15 percent difference is triple the gap that existed when the monitoring system began.

Read the Full Series

Alejandra Matos is a politics and government reporter for the Houston Chronicle's Austin bureau. She previously covered local education for the Washington Post and the Minneapolis Star Tribune. She is a graduate of American University in Washington D.C. and the University of Texas at El Paso.

Wednesday, January 16, 2019

Clues into Early Development of Autism Spectrum Disorder

From the Salk Institute
via ScienceDaily

January 7, 2019

Neurons from people with autism exhibit different patterns of growth and develop at a faster rate.

Neurons from people with autism exhibit different patterns
of growth and develop at a faster rate. This image shows a
two-dimensional culture of subject-derived cortical neurons
stained for neuronal markers MAP2 (red) and Tuj1 (green).

Autism spectrum disorder (ASD) is a relatively common developmental disorder of communication and behavior that affects about 1 in 59 children in the US, according to the Centers for Disease Control and Prevention. Despite its prevalence, it is still unclear what causes the disease and what are the best ways to treat it.

Researchers at the Salk Institute compared stem cells created from individuals with ASD against stem cells created from those without ASD to uncover, for the first time, measurable differences in the patterns and speed of development in the ASD-derived cells.

The findings, published in the journal Nature Neuroscience, could lead to diagnostic methods to detect ASD at an early stage, when preventive interventions could potentially take place.

"Although our work only examined cells in cultures, it may help us understand how early changes in gene expression could lead to altered brain development in individuals with ASD," says Salk Professor Rusty Gage, the study's senior author and president of the Institute. "We hope that this work will open up new ways to study neuropsychiatric and neurodevelopmental disorders."

For the study, the researchers took skin cells from eight people with ASD and five people without ASD and turned them into pluripotent stem cells -- cells that have the ability to develop into any cell type. They then coaxed the stem cells to develop along the path of becoming neurons by exposing them to certain chemical factors.

By using molecular "snapshots" from different developmental stages in the stem cells, the team was able to track genetic programs that switched on in a certain order as the stem cells developed into neurons. This revealed key differences in the cells derived from people with ASD.

For instance, the Salk team observed that the genetic program associated with the neural stem-cell stage turned on earlier in the ASD cells than it did in the cells from those without ASD.

This genetic program includes many genes that have been associated with higher chances of ASD. In addition, the neurons that eventually developed from the people with ASD grew faster and had more complex branches than those from the control group.

"It's currently hypothesized that abnormalities in early brain development lead to autism, but the transition from a normally developing brain to an ASD diagnosis is blurred," says first author Simon Schafer, a postdoctoral fellow in the Gage lab. "A major challenge in the field has been to determine the critical developmental periods and their associated cellular states. This research could provide a basis for discovering the common pathological traits that emerge during ASD development."

"This is a very exciting finding, and it encourages us to further refine our methodological framework to help advance our understanding of the early cell biological events that precede the onset of symptoms," adds Gage, who holds the Vi and John Adler Chair for Research on Age-Related Neurodegenerative Disease. "Studying system dynamics could maximize our chance of capturing relevant mechanistic disease states."

The researchers say the experiments in this study will lead to more dynamic approaches for studying the mechanisms that are involved in ASD predisposition and progression.

They next plan to focus on the creation of brain organoids, three-dimensional models of brain development in a dish that enable scientists to study the interactions between different types of brain cells.

"The current diagnostic methods are mostly subjective and occur after the emergence of behavioral abnormalities in young children," Schafer says. "We hope these studies will serve as a framework for developing novel approaches for diagnosis during an early period of child development -- long before behavioral symptoms manifest -- to have the maximum impact on treatment and intervention."

Other researchers on the paper were Apua C. M. Paquola, Shani Stern, Monique Pena, Thomas J. M. Kuret, Marvin Liyanage, Abed AlFatah Mansour, Baptiste N. Jaeger, Maria C. Marchetto and Jerome Mertens of Salk; David Gosselin of Université Laval in Quebec City, Canada; Manching Ku of the University of Freiburg in Freiburg, Germany; and Christopher K. Glass of the University of California San Diego.

This work was funded by The James S. McDonnell Foundation, G. Harold & Leila Y. Mathers Charitable Foundation, JPB Foundation, the March of Dimes Foundation, National Institutes of Health (NIH) grants MH095741 and MH090258, The Engman Foundation, Annette C. Merle-Smith, The Paul G. Allen Family Foundation, and The Leona M. and Harry B. Helmsley Charitable Trust. It was also supported by NIH grant P30 014195, the German Research Foundation (DFG) and the Chapman Foundation.

Journal Reference
  • Simon T. Schafer, Apua C. M. Paquola, Shani Stern, David Gosselin, Manching Ku, Monique Pena, Thomas J. M. Kuret, Marvin Liyanage, Abed AlFatah Mansour, Baptiste N. Jaeger, Maria C. Marchetto, Christopher K. Glass, Jerome Mertens, Fred H. Gage. Pathological priming causes developmental gene network heterochronicity in autistic subject-derived neurons. Nature Neuroscience, 2019; DOI: 10.1038/s41593-018-0295-x