AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Monday, 21 October 2013

AAPD Disability Daily ~ The American Association of People with Disability ~ Your news. Daily. Unfiltered ~ Monday, 21 October 2013

NATIONAL

Airlines mishandle wheelchairs, strand people with disabilities. USA Today (10/18) by Jeanette Pavini

Imagine the next time you take a flight, you are asked to turn over your electronic devices. That's right, your laptop, tablet and smart phone. And when you arrive at your destination they are given back to you broken into pieces. You wouldn't tolerate this, would you?

This is exactly what people traveling with motorized wheelchairs deal with every day. The only difference is that their wheelchairs are electronic devices that provide their mobility. Without them, they are stuck.

That's what happened in March 2012 to Yomi Wrong, executive director of the Center for Independent Living in Berkeley, Calif., when she flew from California to Florida for a conference. After landing, she was left on the plane for an hour while the airline tried to locate her motorized wheelchair. When it finally was brought to her, the headrest and backrest were broken off and lying on the seat. No one from the airport or the airline would help Wrong try to fix her chair, citing liability concerns.

"It goes to a lack of awareness and effective training. Ultimately this amounts to discrimination to one group of passengers, people with disabilities." says Wrong.

Like most such wheelchairs, Wrong's is made to meet her specific needs and not interchangeable with other wheelchairs. Without any tools, Wrong tried to screw the pieces back in place and used bungee cords to help hold the chair together. Delayed by several hours, she missed several conference events. After her return to California, the airline finally repaired her damaged chair.

"This chair costs $26,000 -- more than some people pay for a vehicle. When you hand your keys over to a valet you don't expect that they're going to crash your car and not take responsibility for it and that's what happens to us," says Wrong.

Beyond breakage, many times there is damage undetectable by the human eye that may cause the electrical systems to malfunction and even cause physical harm.

"It's an outrage that we have been fighting for decades," says Marilyn Golden, a senior policy analyst for the Disability Rights, Education and Defense Fund in Berkeley. "We fought to get a law which was passed in 1986, the Air Carrier Access Act (which prohibits discrimination against disabled persons). We fought to get regulations issued that were strong. And we have fought to get those regulations implemented and enforced."

Golden says it's the responsibility of the Department of Transportation to oversee and enforce this law. "Every law, particularly civil rights laws need strong enforcement to be effective. This law has weak enforcement and that's one big reason why we don't see a resolution."

DOT regulations cover airlines' obligations in the handling of various types of wheelchairs. In 2011 The Department of Transportation proposed a new rule requiring airlines to report more information specific to mishandled wheelchairs. According to the DOT this filing still is under review. Under current regulations, airlines do have to file an annual report with the DOT on all disability-related complaints they receive. The DOT offers a monthly Air Travel Consumer Report summarizing disability-related complaints against airlines filed with the DOT by passengers.

Most airlines do pay for any repairs needed, but the process isn't an easy one and not always speedy. Many times there is a wait for repair appointments, sometimes several weeks. If a chair is an older model, the airlines may not cover the full amount. And in some cases, consumers face the financial strain of having to pay for repairs and wait to be reimbursed.

Meanwhile, without their mobility, their lives can be halted. They may not be able to get to work or to medical appointments.

Advocates for the disabled say airlines should install systems to properly lift and stow wheelchairs with cargo, as opposed to sending them up the conveyor belt like luggage. Wrong says that employees and ground crews also need training on the proper handling of wheelchairs.

"It's beyond inconvenience, it's completely disabling," says Wrong. "If my chair is in pieces, if it doesn't work, if the electronics malfunction and they give it to me in pieces, that's more than inconvenient, I think it's criminal."

~~~

Color of Money: No answers for long-term care burden. The Buffalo News (10/20)

I suspect many people didn’t know that the Affordable Care Act, or “Obamacare,” was supposed to include much-needed coverage for long-term care.

Ironically, the enacting legislation was called the Community Living Assistance Services and Supports (CLASS) Act. But what happened to an initiative that was meant to address what is certainly going to be a huge financial burden for families as the population ages isn’t classy at all. It’s sad.

The CLASS Act envisioned an insurance program administered by the federal government that would cover long-term care.

Medicaid is now the only federal program that extensively deals with these services. But to qualify for the benefit, you have to be pretty poor. Medicare, except in very limited situations, does not cover long-term care, which includes assistance with daily activities such as eating, dressing and bathing, or help with someone who has a severe cognitive impairment such as Alzheimer’s disease.

Under the CLASS Act, premiums would have been paid through payroll deductions by employees who decided to participate in the program. Participation by workers would have been voluntary. So participants, not the taxpayers, would have covered the cost. If you were self-employed or your employer chose not to participate, you could have participated through a government-sponsored payment mechanism.

The program promised to provide lifetime cash benefits of at least $50 a day to people with disabilities to help with the costs of long-term services and support. The idea was to keep them in their homes and communities, if possible.

But there is no more CLASS Act. The Obama administration abandoned the idea because there was great concern that the voluntary nature wouldn’t make the program actuarially sound. There was fear that the people who needed the insurance the most would pay, but others who didn’t would opt out. Premiums in turn would be too high. If the insurance program became financially unstable, there would have been great pressure for the federal government to bail it out.

So what was put in its place?

A commission.

Specifically, the Commission on Long-Term Care, which didn’t have long to grapple with this issue – from June until last month. The commission recently issued its report and recommendations on the looming long-term care crisis.

The commissioners, at least those who voted to deliver the report to Congress, concluded that the long-term services and support system as it currently operates in this country “is not sufficient for current or future needs.”

I’ll give them this. The report lays out the problem well. Basically, individuals in need of services often don’t have enough money to pay for long-term care. They mostly rely on family and friends who often are also at their financial wits’ end. Caregivers are overburdened and underpaid.

If we don’t figure out how to address this issue, the situation will get worse.

“With little time and in today’s politically charged environment, it was unlikely the commission would achieve anything more,” said Jesse Slome, executive director of the American Association for Long-Term Care Insurance.

Many people were disappointed. The report was passed by a 9-6 vote. Five commissioners were so dissatisfied with what was put forth that they issued a separate statement about why they didn’t vote to support the report.

Judy Feder, who served on the commission and is an Urban Institute fellow and professor at the Georgetown Public Policy Institute, is not happy.

People can’t plan for an unpredictable catastrophic need such as long-term care unless they have an insurance mechanism, Feder said.

The five commissioners issued their own recommendations calling for a public social insurance program.

“What we need is a public insurance core that can be supplemented with private insurance and family care,” Feder said.

“The question is, are we going to meet the needs of a growing population or are we going to leave them hanging?” she asked.

~~~

STATE/LOCAL

Georgia to review mental disability requirement in death row cases. Fox News (10/20)

ATLANTA –  The state that was the first to pass a law prohibiting the execution of mentally disabled death row inmates is revisiting a requirement for defendants to prove the disability beyond a reasonable doubt -- the strictest burden of proof in the nation.

A state House committee is holding an out-of-session meeting Thursday to seek input from the public. Other states that impose the death penalty have a lower threshold for proving mental disability, and some don't set standards at all.

Just because lawmakers are holding a meeting does not mean changes to the law will be proposed, and the review absolutely is not a first step toward abolishing Georgia's death penalty, said State Rep. Rich Golick, R-Smyrna, chairman of the House Judiciary Non-Civil Committee.

Georgia's law is the strictest in the U.S. even though the state was also the first, in 1988, to pass a law prohibiting the execution of mentally disabled death row inmates. The U.S. Supreme Court followed suit in 2002, ruling the execution of mentally disabled offenders is unconstitutional.

The Georgia law's toughest-in-the-nation status compels lawmakers to review it, Golick said.

"When you're an outlier, you really ought not to stick your head in the sand," he said. "You need to go ahead and take a good, hard look at what you're doing, why you're doing it, weigh the pros and cons of a change and act accordingly or not."

Thursday's meeting comes against the backdrop of the case of Warren Lee Hill, who was sentenced to die for the 1990 beating death of fellow inmate Joseph Handspike, who was bludgeoned with a nail-studded board as he slept. At the time, Hill was already serving a life sentence for the 1986 slaying of his girlfriend, Myra Wright, who was shot 11 times.

Hill's lawyers have long maintained he is mentally disabled and therefore shouldn't be executed. The state has consistently argued that his lawyers have failed to prove his mental disability beyond a reasonable doubt.

Hill has come within hours of execution on several occasions, most recently in July. Each time, a court has stepped in at the last minute and granted a delay based on challenges raised by his lawyers. Only one of those challenges was related to his mental abilities, and it was later dismissed.

A coalition of groups that advocate for people with developmental disabilities pushed for the upcoming legislative committee meeting and has been working to get Georgia's standard of proof changed to a preponderance of the evidence rather than proof beyond a reasonable doubt. Hill's case has drawn national attention and has shone a spotlight on Georgia's tough standard, they say.

The process has taken an enormous amount of education, said Kathy Keeley, executive director of All About Developmental Disabilities. Rather than opposition to or support for the measure she's pushing, she's mostly encountered a lack of awareness about what the state's law says, she said.

The groups are hoping to not only express their views at the meeting, but also to hear from others to get a broader perspective, Keeley said. The changes should be relatively simple and very narrow in scope, targeting only the burden of proof for death penalty defendants, she said.

Ashley Wright, district attorney for the Augusta district and president of the state District Attorneys' Association, said prosecutors question the logic of changing a law that they don't see as problematic and that has repeatedly been upheld by state and federal courts.

"The district attorneys don't believe that you change a law for no reason and, in this case, the law appears to be working," she said. "Where has a jury done a disservice? Why are we putting all our eggs in the defendant's basket and forgetting that there's a victim?"

Prosecutors agree that the mentally disabled shouldn't be executed, and defendants are frequently spared the death penalty when there is proof of their mental disability supported by appropriate documentation from credible and reliable experts, she said.

But Hill's lawyer, Brian Kammer, argues that psychiatric diagnoses are complex, and "experts who have to make diagnoses do not do so beyond a reasonable doubt, they do it to a reasonable scientific certainty."

Furthermore, he said, disagreements between experts make the beyond-a-reasonable-doubt standard nearly impossible to meet.

"Even where evidence is otherwise seemingly overwhelming that a person has mental retardation, one dissenting opinion that splits a hair on one or more pieces of evidence can result in that person who's almost certainly mentally retarded being executed," Kammer said.

In Hill's case, a state court judge concluded the defendant was probably mentally disabled. In any other state, that would have spared him the death penalty, Kammer said.

Additionally, three state experts who testified in 2000 that Hill was not mentally disabled submitted sworn statements in February saying they had been rushed in their evaluation at the time. After further review and based on scientific developments since then, they now believe Hill is mentally disabled, they said.

The state has dismissed the doctors' new testimony, saying it isn't credible. And courts have ruled that Hill is procedurally barred from having a new hearing. His lawyers had asked the U.S. Supreme Court to review the case based on the new evidence, but the high court this month declined to take it up. Hill has a challenge on different grounds pending before the Georgia Supreme Court. But he has exhausted his challenges on the mental disability issue, Kammer said.

Even if changes are made to Georgia's law, they will likely not be retroactive and wouldn't apply to Hill, Keeley said.

~~~

OPINION: Mental health in prisons: It’s a crime. The Seattle Times (10/19) by Jonathan Martin

The state prison in Monroe is the largest psychiatric facility in Snohomish County.

As if that’s not depressing enough, the Monroe Correctional Complex is large enough to rank just behind Western State Hospital as the second largest in the state.

No humane person thinks prisons are the right place to treat the mentally ill, including the folks who run Washington’s prisons.

But left to pick up the pieces of the state’s fractured mental-health system, they are leaning into the job. Quietly, the state Department of Corrections has carved out treatment programs at all custody levels, from maximum custody to work release, and has encouraged among corrections staff a sea change in thinking about the mentally ill.

“When systems can’t say no, they’re much more interested in solving the problem,” said Bruce Gage, the DOC’s head psychiatrist. “Here at the Department of Corrections, we don’t have anyone else to turn to, so we can’t say no.”

Monroe, the nearest prison to Seattle, is the locus of this experiment, with nearly 500 beds focused on mentally ill offenders.

The most recent investment in mental health care came in August, when the DOC bought and bolted to the floor oversized school desks in a classroom within the prison’s solitary confinement units, known in prison lingo as Intensive Management Units.

Twice a week since August, offenders are let out of solitary for hours of cognitive behavior therapy classes. I watched one class recently as four offenders, in orange jumpsuits shackled to the desks, went through something like a group therapy lesson.

Not surprisingly, Intensive Management Units are a magnet for the mentally ill, because of their own erratic behavior or as protection from other offenders. One study of the state’s Intensive Management Units estimated 45 percent of isolated offenders had mental illness or traumatic brain injuries. They tend to stay for years, and often return right back to solitary once they’re released to the general population, their illness worsening.

One of them is Danie Perez, 27. While serving a vehicular homicide sentence, he killed his cellmate in 2006 and attempted to kill another in 2009 because “God was making him do things,” according to The (Everett) Herald. He has been in and out of solitary confinement for four suicide attempts and 18 attempts at self-mutilation.

“It’s difficult to survive” being in solitary confinement, said Perez, who won’t be released from prison until he is 76. “I hurt myself.”

This class — group lessons within solitary confinement — is cutting-edge thinking in corrections. Also used elsewhere in Washington’s prison system, it’s proven to cut use-of-force incidents, protecting officers, and to reduce infractions among the most troubled offenders.

But as I watched the class, I wondered about what we — as a state, as a nation — must do with a man like Perez.

His acts — murder, attempted murder — merit severe punishment. But his illness is indistinguishable from that of patients at Western State Hospital.

And even with the DOC’s forward-thinking mental-health programs, he is assured a level of treatment to let him survive, not recover. Mental illness in prison is a weakness, and the weak are prey. Offenders in the general population mock psychiatric units as “ding wings,” dispensing “ding biscuits” as medications.

By Gage’s estimate, between 20 and 30 percent of Washington’s 16,700 inmates are mentally ill. When I asked why, Gage, who spent two decades at Western State Hospital before switching to the DOC, went broad.

“It used to be called deinstitutionalization,” said Gage. “Now it’s called trans-institutionalization. We took everyone out of the state hospitals, and they pretty much, the same population, ended up in prisons and jails.”

The jailing of the mentally ill cannot honestly be called an accidental byproduct of the nation’s fractured mental-health system. The disinvestment in mental health care has gone on too long — generations now — to be considered anything but deliberate neglect.

In 1955, before deinstitutionalization, there was one psychiatric bed for every 300 U.S. residents. A half-century later, that ratio is now 1 in 3,000.

That has led to another telling ratio: For every one person in a public or private psychiatric bed in Washington, there are 3.1 people with serious mental illness in the state’s jails and prisons, according to the Treatment Advocacy Center. Nationally, the ratio is 3.2 to 1.

And that is a crime.

Jonathan Martin's column appears regularly on editorial pages of The Times. His email address is jmartin@seattletimes.com

~~~

INTERNATIONAL

OPINION: A global challenge: aiding those with disabilities. CNN (10/21) by Tara Sonenshine

Editor's note: Tara Sonenshine is former undersecretary of state for public diplomacy and public affairs and currently a distinguished fellow at George Washington University's School of Media and Public Affairs.

(CNN) -- Imagine not being able to hear a siren during an emergency or to see a warning sign to evacuate. Imagine navigating knee-high mud in a wheelchair or trying to explain to a child with Down syndrome why he or she must seek higher ground. Those are just some of the challenges facing those with physical and cognitive disabilities -- people often least prepared to face a natural disaster.

A largely overlooked report issued this month by the United Nations Office for Disaster Risk Reduction found that the crucial needs of about 1 billion people living with physical and mental disabilities around the world are not woven into the disaster planning and emergency response plans of governments and civil society groups.

The result is that a disproportionate number of disabled persons suffer and die in disasters because of a lack of attention to their needs. Emergency response systems and shelters are poorly designed to handle their requirements. According to the report, 70% of those with disabilities who responded to the survey in over 100 countries said they did not know how to tap into any existing emergency response system in their communities. They become largely dependent on the good will of families and neighbors.

The report confirms the experience from recent catastrophes like the 2010 earthquake in Haiti -- where deaf victims were trapped underneath rubble, unable to hear the sounds of rescuers drilling above -- and the 2011 earthquake and tsunami in Japan, where victims in wheelchairs could not board evacuation buses or get into temporary housing that had no ramps.

And we have seen in the U.S. during Hurricane Katrina and other major storms how those with disabilities suffer. In a post-Katrina study of survivors, reports found that people with physical or cognitive disabilities faced considerable barriers to transportation, evacuation, and housing. Dozens died in nursing homes and medical centers. Many of the disabled survivors did not have jobs, making post-crisis transition even more challenging.

It is tempting to presume that people with disabilities are small in number. The reality, however, is that roughly 15% of people in the world live with a physical or cognitive disability -- many of them in developing countries that cannot afford care and inclusion.

In the United States, 37.2 million Americans have some form of disability. Despite the success of programs like the Americans with Disabilities Act, there are millions of people left without meaningful employment, education, and services before, during, and after a crisis.

The United States has a global imperative to address the needs of the disabled today -- especially in difficult fiscal times. Leaving aside the moral obligation, there is an economic driver at work. Worldwide, people with disabilities have higher unemployment rates than those without disabilities. In developing countries, 80% to 90% of persons of working age with disabilities are unemployed, whereas in industrialized countries the figure is between 50% and 70%. Their exclusion from the workplace deprives societies of an estimated $1.4 trillion in gross domestic product.

As we plan for disaster relief, as well as routine development and assistance, it is vital that America lead with a sustained commitment to those with disabilities. The U.S. failure to ratify the U.N. Convention on the Rights of Persons with Disabilities -- a convention signed by 155 nations -- reinforces a perception that America does not care about the disabled.

Yet despite the failure to ratify the convention, America has a good story to tell on inclusive development and disabilities. The U.S. Agency for International Development has led the way on supporting principles of universal design that not only fund specific programs to address the targeted needs of disabled citizens, but integrate disabilities into generalized programs that improve job training, education, quality and accessibility of care.

Over 75% of U.S. missions and USAID offices report activities and programs that specifically include people with disabilities. The U.S. State Department has a special adviser for international disability rights and has made enormous progress in expanding the range of U.S.-funded exchange programs to include more participants with disabilities and to convene international experts around the issue.

Recently, a major conference took place in Washington, with leaders on disability rights from Kazakhstan, Kyrgyzstan, Pakistan, the Philippines, Tajikistan, and Uganda and representatives from NGOs, universities, and government offices in the U.S., to address challenges facing persons with disabilities in their home communities. The U.S. sent the first-ever official team of disabled sports envoys to China to promote inclusion and equality for persons with disabilities.

This month we celebrate the 25th anniversary of National Disability Employment Awareness Month to pay homage to our own citizens with disabilities. The October campaign theme is "Because we are EQUAL to the task." This is a good time to think about those at home and overseas who are marginalized and excluded because of disabilities and make sure we are doing our part.

Follow us on Twitter @CNNOpinion.

Join us on Facebook/CNNOpinion.

~~~

HEALTH

The obstacles to dental care for adults with disabilities. The Globe and Mail (10/18) Wendy Stueck

When Graeme Rush is happy, he jumps up and down.

When he is unhappy or in pain, he sometimes hurts himself, biting his arms or banging his head with his fists.

Mr. Rush, now 26, was diagnosed with autism at the age of three. He does not speak or write. For months beginning in 2006, he banged his head so hard and so often that he permanently damaged one ear. His parents, suspecting his behaviour might have something to do with his teeth, sought dental treatment.

It would not be routine. Mr. Rush will let caregivers brush and floss his teeth, but he cannot sit still for a needle, drill or sometimes even an x-ray. For him, anything beyond the most routine dental work typically requires general anesthetic in a hospital operating room. For several reasons – including a botched x-ray in 2006 and uncertainty over whether Mr. Rush’s behaviour indicated a problem with his teeth or other medical concerns – it was more than a year before he was sedated for a full checkup.

By that time, in early 2008, he had more than a dozen cavities and five teeth that were infected enough to require immediate root canals.

For his mother, Joan Rush, the ordeal came to highlight an overriding problem: limited access to dental care for people like her son. As a child, Mr. Rush received dental care through provincial services for children under 18. As an adult, he slipped into a grey zone where adults with conditions including Down syndrome, cerebral palsy or autism can wait months or even years for dental care.

“Graeme had always been in the loop for special needs [children],” Ms. Rush said. “I never realized what a cliff everybody falls off once they hit the adult world.”

A lawyer who had long specialized in health and advocacy concerns, Ms. Rush decided to take a closer look at the problem.

The result was a report, released earlier this year, called “Help! Teeth Hurt: Government’s Obligation to Provide Timely Access to Dental Treatment to B.C. Adults Who Have Developmental Disabilities: A Legal Analysis.”

The first three words of the title refer to Carly Fleischmann, a Toronto woman who is autistic and non-verbal and is reported to have typed this message when she learned to communicate using a computer at age 10.

Ms. Rush finds it telling that the girl’s first phrase was a plea for relief from aching teeth.

Ms. Rush bases her legal argument, in part, on a 2012 Supreme Court of Canada decision that found the North Vancouver School District discriminated against a child with dyslexia when it cut special education programs to save money.

That case is one of several she cites to back her argument that the federal and provincial governments are violating the Canadian Charter of Rights and the B.C. Human Rights Code by failing to ensure timely access to treatment and that dentists do not turn away disabled patients for financial or other reasons.

In B.C., adults with disabilities are covered by a dental plan that pays only 60 per cent of the fees set out in the B.C. Dental Association fee guide. So dentists have little financial incentive to treat them.

Even if a dentist is willing, and has sufficient expertise to treat disabled adults, there can be other barriers, including limited access to hospital operating rooms.

It is difficult to determine the scope of the problem. The province does not specifically track waiting lists for dental care for disabled adults. Ms. Rush said waits of up to two years are common. The number of disabled adults in B.C. is growing, and with it, the demand for services. The caseload of Community Living B.C., a Crown corporation that funds and co-ordinates services for disabled adults, has increased by about five per cent a year over the past five years. That trend is expected to continue. Each year, about 500 to 600 young people turn 19 and become eligible for CLBC services.

The agency, which had a budget of $745-million this year to serve about 15,000 adults, came under fire in 2010 and 2011, when dozens of group homes were closed as part of a “service redesign.” In the public outcry that followed, Liberal Premier Christy Clark fired the minister in charge and announced a review. That report, released in January, 2012, included 12 recommendations, none of which mentioned dental care.

Other provinces face similar problems, but Ms. Rush says some – including Ontario, Alberta and Quebec – provide more comprehensive dental coverage than B.C. She would like to see a standard level of care across the country.

Her report makes six recommendations, including building specialized dental clinics and urging the College of Dental Surgeons of B.C. to work with other colleges to develop a specialty in disabled adults.

The college is discussing access to dental care for disabled adults with relevant agencies and does not wish to engage in a “public debate” about a complex issue, spokeswoman Anita Wilks said in an email.

“We can say that the real issue identified in [Ms. Rush’s] report is a lack of resources to deal with complex medical/dental cases such as those presented by adults with developmental disabilities,” Ms. Wilks said. “The problem is not about the qualifications of dentists; rather, that the resources and facilities required are scarce.”

B.C. has promised a white paper on how to improve the lives of people with disabilities.

Social Development minister Don McRae, whose ministry is responsible for CLBC, declined an interview.

But in an emailed statement, the minister said all ideas brought forward during consultation for the white paper would be given “serious consideration.”

People with special needs – along with seniors, children, low-income and aboriginal people – are among those who tend to have limited access to dental care, said Peter Doig, president of the Canadian Dental Association.

“One of the problems is that it comes down to an issue of funding,” Dr. Doig said. “Oral health care has never been made a priority.”

Recognizing such gaps in care, the CDA is pushing for a national oral health strategy.

Ms. Rush, meanwhile, retired from her full-time job as a lawyer in March and now lobbies for dental carewith a steady stream of letters and phone calls to government, university and health-care officials.

Graeme, whose teeth are brushed and flossed at least twice a day, has been waiting for more than a year for treatment under general anesthesia for additional restoration work.

~~~

Nearly Two-Thirds Of Autistic Kids On Meds. Disability Scoop (10/21) CULTURE/MEDIA by Shaun Heasley

Despite limited evidence supporting the practice, researchers say nearly two-thirds of children with autism are taking at least one psychotropic drug.

In a review of medical and pharmacy claims data for 33,565 kids with autism between 2001 and 2009, researchers found that 64 percent of children on the spectrum were prescribed at least one psychotropic medication.

What’s more, the study published online Monday in the journal Pediatrics, found that 35 percent of kids with the developmental disorder were given two or more types of drugs simultaneously and 15 percent were taking at least three.

Older children and those with co-occurring conditions like seizures, attention-deficit disorders, anxiety, bipolar disorder or depression were more likely to be taking psychotropic drugs, the study found.

Meanwhile, children with autism living in the Northeast and West were less likely to be taking medication while those in the South had higher odds of being prescribed one or more psychotropic drugs, the findings indicated.

The regional trends may point to a lack of behaviorally-based treatment options in some areas of the country, the researchers said.

“Despite minimal evidence of the effectiveness or appropriateness of multi-drug treatment of ASD, psychotropic medications are commonly used, singly and in combination, for ASD and its co-occurring conditions,” wrote the team of researchers from Drexel University, OptumInsight, The Lewin Group and OptumHealth Behavioral Solutions in the study. They said the findings point to an immediate need to establish “standards of care” around the presciption of psychotropic medications for those with autism.

A previous study of more than 60,000 children with autism insured by Medicaid found that 56 percent were taking psychotropic medications. The findings are similar to those of the current study — which included only privately-insured kids — suggesting that children with autism are being advised to take the drugs at similar rates regardless of their insurer, the researchers said.

~~~

RESEARCH/STUDIES

Teen videos help teach social skills to autistic kids. Michigan Radio (10/21) by Rina Miller

Researchers at Michigan State University say video-based teaching could help teens with autism learn social skills so they can live more independently.

Earlier studies have shown that many people with autism pay closer attention when they're getting information from innovative technology.

MSU Assistant Professor of Special Education Josh Plavnick  says videos of other teens shown to those with autism do leave an impression because they offer context.
"And you show them engaging in behavior you want the child with autism to perform," Plavick explains. "You show that entire video sequence to them, followed by an opportunity for them to do the same thing.

"We've been finding fantastic attendance to the video and then the students perform those skills with one another, so they're actually interacting with one another in that group setting of about four to five students after watching the video.

Plavnick says the videos are repeated as often as necessary, and could one day be a helpful classroom tool.

He developed the group teaching techniques with colleagues while a postdoctoral fellow at the University of North Carolina's Frank Porter Graham Child Development Institute. Their findings are published in the research journal Exceptional Children.

~~~

Autistic children look less friendly to peers, Cambridge research suggests. Cambridge News (10/21) by Eleanor Dickinson

Children with autism face a lifetime of social exclusion due to the very nature of their facial expressions, a new study has shown.

The research, published in the journal Autism, suggests that typically developed children form negative impressions of autistic children after just a 30-second encounter, which can potentially ostracise them from an early age.

Dr Steven Stagg, a lecturer in psychology at Anglia Ruskin, believes this research shows the need for greater social cohesion between autistic and typically developed” children, and more crucially, a better focus interpersonal skills between the two groups rather than solely on the former.

The researchers from Anglia Ruskin and Royal Holloway mixed silent videos of typically developing 11-year-olds with videos of children with autism of a similar age.

They then asked 44 school children, aged 11, to rate the children in the video, who were unaware that some of the children they were watching had a diagnosis of autism.

Children with a diagnosis of autism were rated less trustworthy, and the watchers said they were less likely to want to play with them and to be their friend.

Dr Stagg said: “One of the key things we found with this research was that there was a difference between the children’s facial expressions and their general expressiveness.

“Typically developed children had a more subtle range of expressions, while an autistic child’s face tended to have more exaggerated expressions.

“Poor expressivity has been documented in autism, but our research demonstrates that this can have a significant impact on forming first impressions.

“Children with autism spend many years learning about facial expressivity, but our research shows that by the age of 11 their slower development in this area is already marking them out amongst their typically developing peers.”

But, Dr Stagg believes this research emphasises the need to promote inter-social skills in both typically developed and autistic children, rather than separating them and trying to “fix” the autistic children’s development.

He said: “You don’t say to a person in a wheelchair, you need to try walking, and so you shouldn’t try to make autistic children be someone they cannot physically be.

“Instead we should concentrate on the typically developing children. If they are in a position to interact with disabled children from a young age then we could improve their attitudes.

“According to the Department for Education, 71 per cent of children with an autism diagnosis are currently educated in mainstream schools. It is therefore important that schools work with typically developing children to educate them about autism, in order to break through the negative impressions that can be formed through a moment’s contact.”

Alan Bicknell, deputy chief executive at the charity Autism Anglia, echoed Dr Stagg’s research.

He said: “I would agree that children at a young age tend generally to be more accepting, though that can sometimes have the opposite affect when they reach secondary school and then may start to say unkind things.

“We need to remember that 40-50 years ago, children with disabilities were locked away in institutions. As a society, we have had to get used to having them in the community again. Interaction between the groups at a younger age may therefore be a positive thing.”

~~~

National Network To Focus On Severe Autism. Disability Scoop (10/18) by Michelle Diament

A first-of-its-kind research network is forming with an eye toward better understanding autism by studying kids who are most severely affected by the developmental disorder.

Six inpatient psychiatric facilities across the country that specialize in treating individuals with autism and other developmental disorders are coming together to form the new initiative known as the Autism and Developmental Disorders Inpatient Research Collaborative.

While significant resources have been devoted to autism research in recent years, those behind the new effort say large studies have generally failed to include individuals at the severe end of the spectrum.

“There is so much that remains unknown about autism … and those most severely affected by the disorder both deserve our attention and are likely to provide us clues for understanding the core features of autism,” said Matthew Siegel of Spring Harbor Hospital and the Maine Medical Center Research Institute who is working with his colleague Susan Santangelo to spearhead the new project.

The network will be looking to better understand the genetics behind the communication, intellectual and psychiatric components of autism in hopes of developing more individualized treatments for the disorder, organizers said.

In addition to Spring Harbor Hospital in Westbrook, Maine, the network will include Bradley Hospital in East Providence, R.I., Hampstead Hospital in Hampstead, N.H., Sheppard Pratt Hospital in Baltimore, The Children’s Hospital Colorado in Aurora, Colo. and Western Psychiatric Institute & Clinics in Pittsburgh.

The new effort is funded with a two-year $1.2 million grant from the Simons Foundation and the Nancy Lurie Marks Family Foundation. In that time, researchers plan to enroll 500 individuals at the hospitals in their study.

“In the short term, this will raise the standard of care in the participating hospital units and inform best practices for psychiatry units in the U.S. and abroad,” Santangelo said. “Ultimately we intend to make this study the launching point for future autism research that will unlock some of the mystery surrounding this disorder.”

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CULTURE/MEDIA

Your FDAs - favourite disability acronyms. BBC News (10/21) by Emma Tracey

Ouch asked its Twitter followers for disability and health acronyms, after a member of the team learned a new one - Tatt - at the doctor's surgery.

Many disabilities get condensed into strings of two, three or four letters, because their full medical names are long and cumbersome. Cerebral palsy becomes CP, Ehlers-Danlos syndrome is shortened to EDS and BPD is borderline personality disorder, to name but three.

These names are often difficult to say, and the conditions themselves difficult to explain to strangers. Nor are the acronyms very enlightening.

@EclipseNQ has a quirky solution to this. He tells people that he has HTE, which of course leads to the follow-up question: "What's that?"

"I say it's Hard To Explain. Nobody gets it."

And @Sectioned_ tells us there are many acronyms for mental health services that look like alphabet soup and which can throw up confusing results in search engines. CMHT = Community Mental Health Team "but also the College of Merchandising, Hospitality & Tourism". The AMHP is Approved Mental Health Professional "but also the Association of Major Holiday Parks".

While these are probably unwitting duplicates, London Underground has knowingly repurposed one of the world's most common acronyms to describe some of its disabled customers. In Tube stations, VIPs aren't Very Important but Visually Impaired People. With this in mind, can you guess what MIP stands for?

Finally, for those of you holding your breath to find out what Tatt means, it stands for Tired All The Time.

More of your favourite disability acronyms include:

AB Able-bodied - people who are not disabled

Tab Temporarily Able-bodied - a tongue-in-cheek acronym implying that anyone living without a disability now, could easily become disabled in the future

SEN Special Educational Needs - pupils who require extra help and support at school, who are often classed as disabled and referred to as SEN children

Plod People Living Off Disability - Not heard much since the 1990s, this phrase was mostly used by disability activists to describe everyone from care workers to professionals who would not have a job if it weren't for the existence of disabled people who require support - tongue-in-cheek but some may think it uncharitable

Share more disability and health acronyms with @BBCOuch on Twitter and on Facebook - and listen to our monthly talk show

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ACCESSIBILITY

Wheelchair-accessible hot air balloon rides help kids reach for the stars. Las Vegas Sun (10/21) by Brian Nordii

Twenty years ago, commercial balloon pilot Pat Murphy decided to do something that had never been done before in the U.S. — build a wheelchair-accessible hot air balloon basket.

Murphy had been showcasing his balloon at city schools and camps throughout Southern California. The balloon visits opened children’s eyes to the possibilities of the world and encouraged them to challenge limitations that life places on them.

It was at the cancer camp Reach For the Sky that he realized his basket had its own limitations — children in wheelchairs couldn’t ride.

“I found out some of the children couldn’t get into the basket. ... Even if the child wasn’t a wheelchair user because they were weak with chemo or whatever was going on at the time, they just couldn’t get into the basket,” Murphy said. “So that’s when I knew I had to do something different.”

Murphy’s wheelchair-accessible Reach For the Stars balloon will be one of 16 hot air balloons on display Friday through Sunday at the third annual Hot Air Balloon Festival. The free event held at Southern Hills Hospital and hosted by Friends of Metro Search and Rescue is designed to raise money for Metro’s volunteer search force, to educate the community on health and safety issues, and for families to have fun.

This year’s event includes a carnival, fried food, Metro Police K-9 demonstrations, balloon rides and a balloon glow at night, but Murphy’s balloon is the biggest addition, event coordinator Joyce Goedeke said. It opens up the wonderment of balloon rides to children with special needs.

“That’s what piqued our interest when we heard about (Murphy),” Southern Hills CEO Kimball Anderson said. “That (he) would be able to come out and provide that experience for kids who would never have a chance any other way to do that. We’re excited here at Southern Hills.”

The difference between Murphy’s Reach For the Stars basket and a typical balloon appears simple at first glance: His has a removable door with a ramp and clamps to lock the wheelchair in place. Yet the process to reach that point took seven years.

When Murphy decided to build the balloon in 1993, no manufacturers would even consider selling a wheelchair-accessible basket out of fear of liability issues. Nothing like that had existed before. As it was, the standard balloon baskets required a person to sign a liability waiver.

Still, Murphy was determined. He wanted children with special needs to experience the feeling of weightlessness, to feel the heat from the jet of flames lifting the balloon into the air, to watch life shrink away below them as they drift toward the clouds.

It’s a magical experience that challenges reality. After all, hot air is lifting a balloon the size of a 2,000-square-foot home and weighing 4 tons into the sky.

“When you go out there and the kids see that big colorful balloon, they go nuts. They love it,” Murphy said. “When you think of children with special needs especially, the limitations already placed on them in their lives, to be able to do something they never thought they’d be able to do, what’s better than I can do it, should do it, and I’m doing it?”

Eventually, Murphy fronted his own money, found designers to help him and used his engineering background to make sure the basket would pass tests. He worked around the liability issues by requesting that all users provide their own harness or safety belt to keep them in their chair in addition to his clamps.

In 2000, his basket was cleared for flights. As a way of giving back, Murphy decided to offer balloon rides as a nonprofit. Since he started the nonprofit in 2000, it has grown to three different types of balloons, including “Robbie,” a 13-story-tall balloon in the shape of a child in a wheelchair.

His balloon will provide free tethered rides to special-needs children at the Las Vegas festival. Anderson said it is a perfect fit for the event, which is all about connecting with the community.

“We’re looking for ways to connect with our community and felt like that would be a natural fit for us,” Anderson said. “It would be an added attraction to attract people to the balloon festival and be a benefit to the Las Vegas Metro Search and Rescue auxiliary as well.”

For Murphy, he plans to continue to spread his message to kids that they can overcome any limitations.

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American Association of People with Disabilities
2013 H Street NW, 5th Floor

Washington, DC 20006 United States

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