A second documentary, Lives Worth Living , follows the evolution of the disability rights movement starting in the post-World War II years through the signing of the Americans with Disabilities Act in 1990.  We take for granted the government’s insistence that our schools, public buildings, and transportation must all be handicapped accessible.  Fred Fay, one of the leaders of the disability rights movement who is featured in the documentary, suffered a devastating spinal cord injury as a teenager.  He described how Washington DC, where every corner had a curb but no ramp, was like the Berlin Wall for someone in a wheelchair.  Lives Worth Living reminds us of what life for the disabled used to look like in this country and the extraordinary tenacity of those individuals who fought for and secured civil rights for the disabled.  The documentary, which aired in October 2011, is filled with archival footage, including film of the disabled leaving their wheelchairs and crawling up the steps of the Capitol. 

Another documentary that really hit the mark is called For Once in My Life which aired on PBS. It details a group of musicians all of whom have different disabilities who make wonderful music together and ultimately get to perform for the National Council of Mayors who were holding their annual meeting in Miami, Florida. What I appreciate the most about this documentary is that it is not a sentimental treatment of these adults with disabilities. They are shown in their good and bad moments, struggling with their respective challenges and overcoming them with the support of the band director and each other.  The music they make together is excellent and professional, and secondary to that is that the musicians have disabilities.

Another film that was just released that I have not viewed but sounds interesting is about fencing for people who are blind. Robert Redford co-produced a film that is currently airing at Sundance called The Movement: One Man Joins an Uprising (see trailer) about several people with disabilities who regain a sense of freedom through skiing. A top ten list of disability recommended documentaries is here although some feature adult themes that are not intended for children.

These documentaries are generally available for purchase from the HBO, PBS and other websites and excerpts are available online. Some of the films are hard to locate but may be available through public or university libraries. 

In response to these reports, Representatives Miller and McMorris-Rodgers introduced the “Preventing Harmful Restraint and Seclusion in Schools Act (H.R. 4247) in December 2009.  The bill, which was renamed as “The Keeping All Students Safe Act,” passed the House in March of 2010.  Similar legislation had been introduced in the Senate by Senators Dodd and Burr later that year.  The Senate bill, S3895, was a piece of compromise legislation.  Although the bill limited the use of seclusion and restraint, it did permit their use to be written into IEPs or behavioral intervention plans.  The problem with this compromise was that by allowing a “planned” use of seclusion and restraint in student behavioral plans, school districts could work their way around the spirit of the legislation; namely, to not use seclusion or restraint at all.   The Senate failed to act on the legislation, and the bills died when the 111^th Congress ended.  The “Keeping All Students Safe Act” was once again re-introduced by Representatives Miller and Harper in April of 2011 as H.R. 1381.

The reintroduced House bill, which is sponsored by both Republicans and Democrats, mirrors the legislation passed by Congress in March 2010.  The bill introduced in the Senate by Senator Harkin offers additional safeguards to the House legislation, including the outright prohibition of the use of seclusion, along with mechanical restraint, chemical restraint and “aversive behavioral interventions that compromise health and safety,” thereby making it impossible to include the use of seclusion in an IEP or behavioral plan.  Restraint may only be used in emergencies when there is an immediate threat of serious bodily harm occurring. Additional provisions of the Harkin bill include notification of parents within 24 hours should a student have been restrained followed by a debriefing with parents and staff and the performance of a functional behavioral analysis; a no retaliation position to protect any parent, teacher, staff member or other person who reports an incident where restraint was used; collection and dissemination of data by schools to document when restraints were used; and additional staff training to ensure that staff can safely and appropriately use restraints when necessary.  And for many disability groups, one of the most important aspects of the Harkin bill is the inclusion of numerous provisions to develop effective intervention and positive prevention practices to help de-escalate potential crisis situations, thereby obviating the need for any form of restraint.

Whereas last year Representative Miller, as chair of the Education and the Workforce Committee, had successfully obtained support from 24 Republicans to pass the House legislation, the political climate has changed, which may make passage of the Harkin bill, which lacks a Republican co-sponsor, tough.  The new Republican chairman of the Education and the Workforce Committee, Representative John Kline, has stated through a spokesperson, “State and local leaders are taking steps to ensure school practices are safe for students and have made great progress in achieving this shared goal.  Chairman Kline remains concerned that federal intervention could obstruct these efforts, ultimately doing more harm than good to students and educators.”

And finally, opposition to the legislation is also coming from the American Association of School Administrators (AASA).  The AASA is objecting to the requirement that restraint can only be used to avoid serious bodily injury.  The AASA finds the standard problematic because it would be impossible for school staff to determine whether the risk of injury in a crisis situation could or could not lead to serious bodily injury, leaving school districts open to legal action should their use of physical restraint be deemed inappropriate after the fact.  The AASA is also arguing that the data collection provisions of the act as well the demands on staff training will be both burdensome and costly for school districts.

To help ensure the passage of this legislation, advocacy groups are rallying to encourage parents and other interested parties to lobby their Senators and Representatives.  APRAIS, The Alliance to Prevent Restraint, Aversive Interventions and Seclusion, has prepared a packet with history on the legislation, internet resources, and suggested telephone scripts and drafts for the submission of letters or emails to Representatives and Senators.  Barring the passage of this particular legislation, advocates can also urge their Senators to support any amendments introduced during the reauthorization of the Elementary & Secondary Education Act (No Child Left Behind) to restrict use of seclusion and restraint in schools.  The Senate should be debating the ESEA early in 2012, although movement on this legislation is stalled. 

"One wonders what Respondent School District would think if, at the beginning of a hearing, the Administrative Law Judge announced that he has reviewed the exhibits and made a decision for the parent, but will keep an open mind and reconsider his decision upon presentation of further evidence at the hearing."

While most school district's are not so brazen as to publish their predetermination, it does happen on occasion, and parents should be on the look out for such statements that are clearly indicative of predetermination.  In most cases more inferential arguments on the issue of predetermination are not likely to succeed.

As you know, CHADD is very concerned about the current shortage of medications to treat ADHD. No one seems to have a good handle on the extent of the shortages. If you would take just a moment to answer a few questions about your personal experience with the availability of your medication, then CHADD will know much more about the extent of the problem, all the medications being affected, and the geographic distribution. It is important that we hear from people who are not having problems as well as those who are. We need both sides of the picture.

Answer the quick, anonymous survey.

 Specifically, three of the five regular primetime characters are on the Fox network:  Dr. House uses a cane, a character on Glee uses a wheelchair, and a character on Raising Hope has Alzheimer’s.  On NBC, young Max Braverman of Parenthood has Asperger’s syndrome, and on CSI:  Crime Scene Investigation, a character uses prosthetic legs.  Neither ABC nor The CW features any regular characters with a disability this season.  Three recurring characters on primetime networks have disabilities, including a character with Down’s syndrome on Glee and two characters with motor disabilities (Fox’s animated Family Guy and ABC’s Private Practice).  

 Of the five characters with disabilities on regular primetime television, only one is played by an actor with a disability (CSI).  Two actors in recurring roles (Glee and Private Practice) have disabilities.  Cable networks fare better in the use of actors with disabilities.  At least eight roles are played by actors with disabilities, including Peter Dinklage, a little person, who won an Emmy for his role on HBO’s Game of Thrones.

The use of non-disabled actors for roles with disabled characters has given rise to considerable fury over the internet.  There is even a term for it – crip face – and the practice has been likened to white actors “blacking up” to play Othello.  One role that has created particular angst is that of Artie, a character who uses a wheel chair, on Glee.  An article in The Guardian aptly titled “No Glee for Disabled People” argues that although non-disabled viewers react to the disability-focused storylines on Glee with “praise and pleasure,” disabled viewers find them “offensive, appropriative, and wildly inaccurate.”  Each casting of a non-disabled actor in a role for a character with a disability excludes the possibility of an actor with a disability appearing in that role.  The Guardian goes on to complain that cable’s Covert Affairs, which also uses a non-disabled actor in a disabled role, perhaps missed the irony in airing a public service announcement using this actor to denounce the lack of employment opportunities for disabled veterans. 

According to the Hollywood Reporter, the unions have taken no official stand on the use of non-disabled actors for disabled characters. But according to actor Anita Hollander, who chairs the I AM PWD steering committee and is a member of AFTRA’s national board of directors, watching these few parts go to non-disabled actors is frustrating.  Ms. Hollander said that in many television premieres this fall, “you’ll keep seeing characters pop up with disabilities in smaller roles.  Everyone seems to want one on their show, and it doesn’t translate most of the time to performers with disabilities.”  Robert David Hall, the only disabled actor on network primetime TV (CSI), said “disabled-actor advocates aren’t looking for handouts; they’re just looking to get through the audition-room door.”  

A corollary to this discussion of how few characters on television have disabilities is the failure to provide a diagnosis for characters who appear to have a disability.  David Zwick, a student at USC who blogs extensively about issues related to autism, in particular focuses on the characters Sheldon on The Big Bang Theory and Abed on Community, both of whom many viewers presume have Asperger’s syndrome.   According to Zwick, the shows may be doing more harm than good by missing an opportunity to raise awareness and increase understanding among viewers of a serious disability.  By not diagnosing Sheldon and Abed, the shows obviate the need to be accurate in their depictions of an ASD, and the characters’ quirks become fodder for humor. Conversely, NBC’s Parenthood, which attempts to depict accurately a family’s struggles with their son Max’s Asperger’s, provides a link on its web site where readers can learn more about the disorder from autism specialists who attempt to help viewers understand Max’s reactions and responses in each episode within the context of his diagnosis.  It is no coincidence that Jason Katims, the show’s creator, has a child with Asperger’s syndrome.

It is beyond the scope of this blog to analyze how well or how poorly characters with disabilities are depicted on primetime television.  It is also beyond the scope of this blog to discuss how successfully or condescendingly issues related to disability are portrayed on television.  It is obvious, however, that there needs to be a far greater representation of not only characters with disabilities but also actors who portray them.  In a perfect world, we would frequently see actors with disabilities on network shows whose respective disabilities are utterly irrelevant to their roles, just as we see individuals with disabilities going about their lives in our communities.  As with other groups in society until they are fully and fairly portrayed in popular media especially television, people with disabilies will continue to be marginalized.

 I imagine most parents with children who have been ill or who have special needs each have had their own unique form of what I call “late night bargaining with G-d in the ICU.”   I would never dream of asking another parent if they would have made different choices if they had had a crystal ball at their child’s birth.  I can only ask and answer for myself.  When I look back at our son’s initial hospitalization, I know that deep in my heart my husband and I would have made the same choices.  Each time a dour-faced cardiologist approached us with different possible scenarios and expressed uncertainty about unknown long-term consequences of this medication or that treatment, my husband and I would again tell the doctors to do whatever they could.  We wanted to bring our son home.  Consequently, I feel that we “signed up” for whatever challenges our son has subsequently faced. They’re part of the deal we made, and bless his heart (literally and figuratively), our son has done extraordinarily well. 

 What brings all this to mind now is that this weekend we attended a very special Bar Mitzvah for a young man who has faced some horrific medical challenges throughout his young life.  And yet, he has an impish smile that can light up the dreariest day in February.  He has been embraced by the congregation, which in turn reveled in this milestone with his joyous family.  I had attended a similarly emotional Bar Mitzvah a number of months ago in which another medically fragile young man was celebrated.  The boy’s pride and happiness were tangible to the entire congregation, which in turn shared his and his family’s joy.  This earlier Bar Mitzvah was particularly emotional for me, because I attended it with a friend who had lost a young child.  I was acutely aware during this Bar Mitzvah that whereas my husband and I had had the opportunity to make our late night bargains with G-d in the ICU, my friend and her husband never had that chance:  their son had died unexpectedly. 

 So where am I going with this?  I really don’t know.  I guess with the winding down of another year, I’m just wishing the best for all of our children.  Each is so precious, and many of us recognize how fragile our children can be.  I want to thank everyone who has looked out for and helped them:  their doctors, their teachers, their therapists, and if need be,  their lawyers.  I know how grateful many of us are for the extraordinary support we’ve received from our families and friends.  May all our children be healthy and happy and always be treated with kindness, understanding, and respect.  That is certainly not too much to want for our children.

 Most young adults with intellectual disabilities (ID) leave high school without a regular diploma.  Realistically, they are unlikely to complete a college degree.  So why push for young adults with ID to attend post-secondary education (PSE) programs? According to Meg Grigal , a Senior Research Fellow at University of Massachusetts Boston at the Institute for Community Inclusion, high schools provide a highly teacher-directed learning environment for students with ID and an extremely proscribed curriculum.  These students have extremely limited choices in selecting those courses that they may find personally fulfilling.  Likewise, high school transition services don’t provide great outcomes.  The youth are funneled into state vocational rehabilitation centers or state developmental disabilities agencies.  And yet statistics indicate that most of these students will be unemployed or underemployed several years out of high school. By providing them a college experience, however, these young adults can learn how to access adult learning and find out what truly engages them. The skills they acquire can translate into better employment.  Do we really want to tell young adults with ID that they are done learning once they turn 21?  According to Dr. Grigal, probably not. 

Sharon Lewis, the Commissioner for the Administration on Developmental Disabilities for the Dept. of Health and Human Services, discussed many of these facts in testimony last spring before the Senate Committee on Health, Education, Labor and Pensions.  According to Ms. Lewis, 1 million students receive IDEA services under the special education classifications of intellectual disability, multiple disabilities, autism, traumatic brain injury, and developmental delay.  Yet despite these services, most of these students graduate without receiving regular high school diplomas.  Whereas 56% of students with autism and 40% of students with multiple disabilities earn high school diplomas, only 34% of students with ID graduate with a regular diploma.  One to four years after high school, individuals with ID have the lowest rate of paid employment (29.8%) of all disabilities.  However, students with ID who completed a PSE program were 26% more likely than students without PSE to leave vocational rehabilitation services with employment and with a 73% higher weekly income. 

 Part of the reason that so many students with ID are showing up on college campuses is because the government is pumping money into programs that will help them be successful.  The Higher Education Opportunity Act, which was signed into law on August 14, 2008, included several provisions that enable students with ID to be eligible for financial aid programs, including Pell Grants, Supplemental Educational Opportunity Grants, and the Federal Work Study Program, all from which they had previously been excluded due to lack of a regular high school diploma.  The act also called for the establishment of model demonstration programs and a coordinating center to support these programs to provide individuals with ID the resources they need to be successful in college programs.  (4) Subsequently, U.S. Secretary of Education Arne Duncan in October 2010 announced 28 grants to fund the model demonstration program and the coordinating center.  Of the 10.9 million awarded, $10.564 million dollars was given to 27 two- and four-year institutions of higher learning under the model comprehensive Transition Programs for Students with Intellectual Disabilities (TPSID).  The 27 TPSID grantees are to create or expand programs that “focus on academics and instruction, social activities, employment experiences through work-based learning and internships, and independent living.” 

 A separate grant was awarded to the Institute for Community Inclusion at the University of Massachusetts Boston to fund the Consortium for Postsecondary Education of Individuals with Developmental Disabilities to support the TPSID grantees.   The goals of the Consortium are “to conduct research, provide training and technical assistance, and disseminate information of promising practices that support individuals with developmental disabilities to increase their independence, productivity and inclusion through access to postsecondary education.” As a result of these multiple efforts, the number of programs available to students with ID has grown from a mere four only eight years ago to more than 250 in over 36 states and two Canadian provinces.

Happily, some 6000 students with ID are currently attending college programs, and that number should only increase.  (One community college administrator referred to the increase of students with ID as a “tsunami.”) And resources for these potential students and their families are also increasing.  In particular, the Think College website (a project of the Institute for Community Inclusion at the University of Massachusetts Boston) is an exhaustive resource providing information on college options for students with ID and their families.

 And what can we say to these young adults with ID who are showing up on our college campuses?  To quote the film Dead Poets Society: “Carpe diem, boys (and girls).  Seize the day.  Make your lives extraordinary.” 

Children in the study worked on a game like computer program that had them activate or deactivate portions of the brain and they were rewarded with points. After two weeks of the computer program they used red and blue cards to practice the brain activation and deactivation. The other group of children took part in group therapy sessions. Results indicated that parents and teachers, although to a lesser extent, reported great improvement in the children who took part in neurofeedback. It was also noted that kids did better when parents encouraged, rewarded, and reminded them to practice with the red and blue cards. In all eight children learned to successfully regulate brain activity while nine did not.

Others, however, are more effusive in their excitement regarding the new technology.  Dr. Stephen Shore, the author of Autism for Dummies, who was himself diagnosed with autism as a child, said that the “iPad might be the difference between communicating with the outside world and being locked into a closed state.” And many, many parents are anecdotally sharing how their children are beginning to communicate with them for the first time and acquiring more and more skills.   Shannon Des Roches Rosa, in an article for BlogHer, declares that she doesn’t “usually dabble in miracle-speak, but I may erect a tiny altar to Steve Jobs in the corner of our living room.”  According to the blog, her son “electrifies the air around him with independence and daily new skills.” Furthermore, professionals are also embracing the use of iPads for students with autism. One speech pathologist stated, “I just couldn’t imagine not introducing this to a parent of a child who has autism.

So, why is the iPad working so well so for kids with autism?   Unlike other augmented communication devices, such as the Dynavox, experts say that the iPad is more intuitive for children to use and gives them control over the interface.  Its touch screen is good for children with fine motor issues.  And children seem to know instinctively how to use the iPad, which is described as being “cheaper, faster, more versatile, more user-friendly, more portable, more engaging, and infinitely cooler for young people.” 

Andrea Leonardi, the special education director of Fairfield, CT, which is incorporating iPads into their special education programs, believes it is the applications that allow the iPad to be individualized to a student’s needs.   And Apple, which has 60,000 apps and a “special education” section on its web site, continues to pump out apps for students with special needs. Des Roches Rosa, in her previously discussed blog, discusses many of the apps that she believes are opening the world up to her son, including DrawFree, IWriteWords, and First Then Visual Schedule.  Rosa also praises Stories2Learn, which is used for creating social stories.

Actual data on the effectiveness of these new technologies are limited.  A 2008 study from Australia reported behavioral improvements in ten students who were using the iPod.  According to this study, about 60% of the educational goals set for the study were achieved.  The researchers concluded that the technology afforded students the “potential to live healthy, fulfilling, and productive lives.”  Another 2009 study from the United States, whose results were published in the Journal of Positive Behavior Interventions, reported that providing instructional demonstrations on an iPod, a technique known as video modeling, was an effective means to helping students achieve a desired behavior.  Finally, only one study, “Touch Technologies in the Classroom,” is reviewing the effectiveness of iPads in six classrooms for autistic students.  Although data are still being gathered for this study, preliminary reports are favorable.  

Many parents are beginning to request that iPads be made available to their children through their IEPs.  To find out if an iPad is appropriate for your child, request an assistive technology evaluation.  The results of that evaluation are what should drive the IEP decision on whether or not your child should have the iPad, not the cost or availability of the technology to your school district.