Federal law reflects this understanding by requiring that preschool children with special needs (ages 3 through 5) be provided a free and appropriate public education (FAPE) in the least restrictive environment (LRE) to the maximum extent appropriate. (Whether or not 2 year olds should be included in the LRE requirement is left to the discretion of individual states.)   IEP teams must consider for each special needs preschooler whether an inclusive setting, with appropriate aids and supports, will enable the child to be educated alongside his or her non-disabled peers.  Preschoolers may be placed in special needs programs only if the severity or nature of the child’s disability makes a non-inclusive placement impractical.  The rub, however, is that most school districts do not offer preschool programs for non-disabled students.   

OSEP (Office of Special Education Programs) has made it clear that lack of school-run preschools does not absolve school districts from their obligation to educate special needs preschoolers in the LRE.   In a February letter from OSEP, school districts are reminded not only of their statutory requirements regarding preschoolers, but also told to be creative in finding alternatives for those young students for whom inclusive settings (defined as a program in which at least 50% of participants are non-disabled) will be beneficial. In securing a non-inclusive setting for a preschool child with special needs, school districts should consider the appropriateness of a kindergarten placement, Head Start programs, public or private preschool programs, community-based child development centers or care facilities, or a child’s home.  If the district determines that a private preschool program is most appropriate, it must be paid for by the school district and not the family to ensure FAPE.

It’s obviously not enough to simply place a preschooler in an inclusive setting and assume all will be well.  The IEP team must plan for success. Many modifications may need to be considered, including environmental adaptations, instructional or curricular modifications, specialized instructional strategies, peer supports, team teaching strategies, assistive technology, or additional adults in the classroom.  These adults may be special ed aids, special education teachers, or itinerant service providers.  A child’s therapy and other related services can also be provided within the classroom.  Classroom teachers and support staff will also need specific support, including training, in order to address IEP goals within the classroom.  With everything properly in place, the special needs preschooler can hopefully learn and play alongside his or her non-disabled peers.

The “maintenance of effort” clause in IDEA protects special education funding from school districts that might otherwise attempt to balance their budgets on the backs of students with disabilities.  Under the MOE clause, school districts must either maintain or increase their spending for special education each year.  IDEA recognizes, however, that there are legitimate reasons for special education budgets to be reduced.  But the recognized exceptions are few: e.g., the voluntary departure of a highly-paid staff member who is replaced by a staff person at a lower salary, when a student whose needs are particularly costly for a district no longer needs services either due to age or moving out of the district, or the termination of costly expenditures, such as the building of a new school.  Going forward, these school districts with approved reductions may use the lower budget amount to meet their MOE obligations.  Conversely, districts that have cut their budgets for other than the explicit exceptions outlined by IDEA are considered in violation and will lose federal funds.  These districts remain in violation until they have restored their budgets to the previous higher level of spending. 

This whole understanding of MOE appeared to have been turned upside down last June, when the Department of Education, in response to a query by the executive director of the National Association of State Directors of Special Education (NASDSE), stated that the MOE obligation applied only to the actual amount expended in the prior fiscal year, whether the reduction was legitimate or not. Districts could then subsequently use this lower budget as their new benchmark.  Kathleen Boundy, co-director of the Center for Law and Education, wrote the OSEP in August suggesting that the Department of Education’s reasoning was not only a misinterpretation of IDEA but also was inconsistent with IDEA’s legislative history. Additionally, Ms. Boundy argued that OSEP was allowing school districts to “enrich” themselves from their violations. In response to Ms. Boundy’s letter as well as other complaints from parents and advocacy groups, the OSEP reversed its decision this past A. 

Not everyone is happy, of course, with the decision.  The American Association of  School Adminstrators had been relieved with the original June letter from OSEP.  According to an AASA spokesperson, the challenge of meeting state budget cuts along with a decrease in federal dollars has made achieving MOE exceedingly difficult.  According to this group, school districts can make legitimate cuts to special education budgets that in no way affect the students; however, MAO allows the districts no flexibility in these circumstances.  Ironically, one group that appears comfortable with the latest OSEP letter is the National Association of State Directors of Special Education, whose initial query to the OSEP started the whole outcry.  The NASDSE’s deputy executive director stated, “We think the revision makes sense.”

How many youth are incarcerated in our country, and what disabilities do they have?  In 2007, more than 87,000 youths were held in juvenile correctional facilities; an additional 3,650 were in state prisons.  Of these numbers, youth with disabilities are overrepresented.  One study showed that whereas only 9% of youth in our nation’s schools are eligible for special education services, an estimated 37% of youth in the juvenile justice system receive services under IDEA. Some reports suggest that the number of incarcerated youths with special needs in fact ranges from 30 to 70% of the population.  Of incarcerated youth, between 65% and 90% could be diagnosed with at least one mental health disorder.  Additionally, it is estimated that approximately 10% of incarcerated youth have learning disabilities, 50% have emotional disorders, 12% have intellectual disabilities, and as many as 50% have AD/HD. 

These youthful offenders have likely been served poorly by their home schools.  They have also likely been served poorly through the educational programs offered by the juvenile justice system.  Even though incarcerated, students who receive special education services are still entitled to FAPE (free and appropriate public education).  But the provision of FAPE can be problematic for youthful offenders. Incarcerated youth can be moved frequently, IEPs and educational records (if they are even obtained from home schools) do not always follow the offenders, families are minimally involved with educational planning, and some of the disciplinary procedures used for offenders are unhelpful to them educationally.  This is regrettable, because we know that youths who progress academically while incarcerated will have lower recidivism rates.

Despite the glum numbers, we know youth with disabilities who are engaged in work or school during the first three months of their release are 3.2 times less likely to return to custody and 2.5 times more likely to remain working or enrolled in school 12 months after leaving the correctional facility. These youth can successfully be returned to society. Thus, it is imperative that good transition programs are developed for these youth to ensure successful outcomes for them. 

To that end, Project Forum conducted a review of programs in four states (Arizona, Georgia, Hawaii, and Oregon) that offer what are considered “best practices” in their reentry programs for incarcerated youths. Historically, re-entry programs for youth tend to be fragmented, and too many offenders fall between the proverbial cracks of the system.  One of the main problems is that youth leaving correctional facilities are aging out of child-oriented social programs and being funneled into adult-oriented services.  Many of these adult programs are developmentally inappropriate for youthful offenders, who can be left floundering.

 To address these gaps in service, each state identified by Project Forum offered comprehensive, multi-disciplinary wrap-around programs to ensure that the needs of youth are met upon release.  Key to each of the programs is the use of a transition coordinator, who establishes relationships with the youths before their release, ensures that community-based services are set in the community upon release, and then continues to follow the youth once they are back in the community. In addition, each state is addressing the educational, employment, social and behavioral, substance abuse, housing, and transportation needs of recently released youth. 

 It is not inevitable that incarcerated youth will return to detention facilities, but the odds are stacked against them.  But as demonstrated by the Project Forum report, youth can be successfully transitioned back into their communities. However, it will take a lot of effort on the part of the juvenile justice system, communities, and social services agencies as well as the released youths and their families to succeed.

It’s difficult to not be facetious here.  These are new reporting requirements, and once school districts comply with them, we will have a veritable treasure trove of information about what is happening to students in our nation’s schools.  But what do we currently know?  How frequently do we believe bullying is actually occurring in schools?  According to the American Psychological Association, 40 to 80% of school-age children experience bullying at some point during their school careers.  Ten to 15% of students are either chronic victims or bullies themselves.  And the data are far more disturbing for students with special needs. A British study indicated that whereas 25% of the general school population reported being bullied, 60% of students with disabilities reported bullying.  Ten studies in the United States indicate that children with special needs are two to three times more likely to be bullied than their non-disabled peers, and that the bullying is more chronic in nature and related to their disability.

Two of the children profiled in the recently released documentary, Bullying, had autism spectrum diagnoses.  The film focused on the grieving family of a 17-year-old who had committed suicide after years of relentless abuse.  Cameras also documented the hellacious experiences of a second boy, a middle school student, who is tormented and physically abused on a regular basis by his peers.  When his parents went to the school after being presented with film footage of an assault on their son on the bus provided by the makers of the film, they were offered only platitudes.  When his parents tried to explain to the boy that friends are supposed to make you feel good and not hurt you, the boy, Alex, responded, but then who are my friends?

 The film is absolutely heartbreaking.  Most likely not all of the children profiled in the film had special needs, but filmmakers consciously chose not to highlight that the two aforementioned boys had Asperger’s.  Cynthia Lowen, who is a writer and producer of the film said, “We didn’t want to continue the idea that targets of bullying bring it on themselves.  They should be safe and protected at school.  That was really the point we were trying to make.”  The idea is laudable, but perhaps the film missed the opportunity to highlight the living hell experienced by some students with special needs and how much more vulnerable they are to bullying.  What schools call a “teachable moment” may have been lost.

 Regardless, we can hope that school staff and students will all view this film as an opportunity to engage in meaningful conversation on the catastrophic toll bullying can take on its recipients, both those with disabilities and those without.  And with a federal effort underway to elevate the seriousness of bullying as a civil rights offense, perhaps, just perhaps, something might finally change.  

On the same day the Civil Rights Data Collection report was issued, the National Disability Rights Network chastised the Education Department for its failure to do more to restrict the use of seclusion and restraint in schools.  According to Curt Decker, executive director of the NDRN, the Department of Education has failed to provide “any meaningful leadership to reduce the use of restraint and seclusion—despite the fact that students are continuing to be confined, tied up, pinned down, battered and nearly killed on a regular basis.”  As discussed in a January 18, 2012 blog on this site, it was the NDRN which in a January 2009 report (School is Not Supposed to Hurt) shined a painful light on the use of seclusion and restraint, which are often unregulated and used disproportionately on children with disabilities, frequently resulting in injury, trauma, and even death.  As a result of this report, a subsequent study undertaken by the Government Accountability Office in 2009 revealed that an estimated 200 students had died in the previous five years as the result of inappropriate use of restraint.  The GAO report led to pending federal legislation designed to eliminate or restrict the use of seclusion and restraint in public schools. 

Conversely, the American Association of School Administrators (AASA) has also just released a report this month titled “Keeping Schools Safe:  How Seclusion and Restraint Protects Students and School Personnel.” The AASA argues that 99% of school personnel use “seclusion and restraint safely, responsibly, and only when circumstances truly demand their application.”  According to the AASA, seclusion and restraint techniques actually enable students to remain in school and keep them out of institutions.  The report derides legislative efforts to prohibit their use in schools. 

TASH blasts the AASA report which it says ignores the growing evidence that seclusion and restraint are dangerous and traumatic techniques to use for everyone involved.  TASH is disturbed that the AASA report focuses on the safety of school staff and ignores the high trauma rate, injuries, and even deaths of students who are restrained.  Although the AASA claims that these techniques are used only in emergency situations, TASH argues that they are in fact used for convenience and punishment. 

Both TASH and the NDRN say that the Department of Education needs to do more to highlight and end the use of seclusion and restraint in schools.  The NDRN urges the Department of Education not only to offer clear instruction on when these practices violate the Americans with Disabilities Act, Section 504 of the Rehabilitation Act, or IDEA, but also guidance on limiting the use of restraint and seclusion.  In addition, the NDRN wants the Department of Education to use its own data to analyze why some school districts use restraint and seclusion more than others, what is leading to the high usage in these districts, and fund research and projects to reduce and ultimately prevent the use of any forms of restraint and seclusion in schools.  Ultimately, both the NDRN and TASH, as well as other disability groups, argue that the data recently released by the Department of Education provide further justification for passing the bills currently waiting in both the Senate and House that preclude the use of seclusion and restraint in schools. Moreover, from a personal perspective, I have seen too many students suffer emotional and physical harm from restraint from seclusion. Many incidents of students being suspended or expelled for "hitting staff" have been in connection with the use or attempted use of restraint or to put a student into seclusion.

Specifically, Dr. Volkmar and colleagues examined the case records of 1000 children diagnosed with autism in 1993, identified 372 of the highest functioning children, and then applied the proposed DSM 5 criteria to them.  Of these children, about a quarter of those who had been diagnosed with autism, about three quarters who had been diagnosed with Asperger’s, and 85% of those diagnosed with PDD-NOS would not be diagnosed with an autism spectrum disorder under the proposed new criteria.  But members of the American Psychiatric Association (APA) who are involved in the DSM diagnostic changes are crying, “Not so fast” to Dr. Volkmar’s report, which is scheduled to be published this spring.  Dr. Volkmar’s critics, including Dr. Catherine Lord who serves on the DSM panel, are saying that the data are inadequate to re-diagnose the 1993 cohort using the new criteria.  The study is simply not valid.

In an effort to reassure parents, APA members are stating that individuals who were appropriately diagnosed under the old criteria would remain on the spectrum.  APA members also argue that based on their own field trials of the proposed criteria, large numbers of patients with Asperger’s syndrome or PDD-NOS will not have “the bottom dropped out from under them.” In fact, one field trial showed a 1% rise in diagnosis rates under the new criteria; a second field trial showed a drop in diagnoses of only 4 or 5% using the new criteria. Of course, there are other studies demonstrating that the new criteria are too stringent, but only a few small changes in the criteria would make the diagnoses more inclusive. 

However, the efforts to calm the fears of individuals on the spectrum and their families by members of the APA were undermined by an op ed piece in the New York Times that discussed the purported over-diagnosis of Asperger’s and other disorders. In this piece, Dr. Paul Steinberg states that many individuals with “quirky absorptions” are being diagnosed with Asperger’s syndrome, to their detriment, when in fact they have a “social disability.”  Along this same line of thought, Dr. Lord argues that “anybody in the world could qualify for Asperger’s or PDD-NOS” if the DSM IV criteria are taken too literally.

As parents, we were somewhat shocked when our son was diagnosed with Asperger’s syndrome in first grade; he didn’t seem “autistic” to us. But we were told that with better diagnosis and understanding of the range of severity of an autistic diagnosis, more and more kids like our son were being diagnosed with autistic spectrum disorders.  But now, parents are being told that kids have been over-diagnosed, and the criteria for diagnosis need tightening.  Frankly, I smiled when I read about the Volkmar study in the original Times article.  Why?  Because my son would probably “lose the diagnosis” under the new guidelines.  And what parent wants his or her child to have a developmental disability?

But the whole question of labels begs the question of why exactly is my son doing so well? He is doing so well because of all the help and support he has had.  My son has had years and years of speech, occupational, feeding, social skills, and psychological therapy.  He’s had academic tutoring and organizational coaches.  All of these services have been provided both through the schools and privately, sometimes paid for by insurance, sometimes not.  And did the schools extend themselves to provide these services?  Did the insurance companies provide him with blank checks?  Of course not.  They’re bureaucratic institutions and there were years we had to go toe to toe with one or both to get the services our son so desperately needed and clearly benefited from.  I don’t know if my son is “truly” autistic, but I know that he needed help.  In a nutshell, the Aperger’s diagnosis gave him and a label and something for us to hang our hat on.  That label made a difference. 

Dr. Harold Koplewicz, the director of the Child Mind Institute in New York, stated “the fact that a diagnosis can become more rigorous and more specific doesn’t mean that kids who do not meet the diagnosis still don’t have another disorder that also still will require intervention.” With respect, Dr. Koplewicz, good luck to families getting insurance coverage or special education services for that diagnosis.   I find it ironic that some of the practitioners who are advocating for the proposed DSM changes are suggesting that family members lobby Congress to demand insurance coverage for their loved ones under the Affordable Health Care Act, which should be finalized in 2014.  By their logic, the cause for concern is not in the redefined criteria, or with the practitioners who are or who are not diagnosing autistic spectrum disorders, but with the insurance carriers, who may justify cutting costs because of the lack of a psychiatric diagnosis with the new criteria.  According to these practitioners, families need to demand appropriate coverage and not allow this reduction in services to happen.   Conversely, disability rights groups are urging parents to begin their advocacy at the source; namely, the American Psychiatric Association, and protest the revisions of the DSM.  To this end, online petitions are already being circulated.  

As a parent I will trust that the motives of the APA in modifying the DSM 5 are good and well-intentioned. I will also trust that the opponents of the new criteria are also well-meaning.  But clearly there is doubt as to which set of “dueling studies’ is accurate.  Given that as many as 3 million adults and children in the United States are diagnosed with autism or a related disorder (1% of 300 million), I agree with the Bloomberg editorial which argues that it is “premature” for the APA to revise the criteria until the consequences of these changes are known. Families of individuals on the autistic spectrum have fought long and hard to obtain educational, medical, and social service benefits for their loved ones.   Let’s not jeopardize these safety nets until we are clear on the implications of these proposed revisions.   

There is a fundamental tension between disability-rights groups and private test taking companies.  Testing companies understandably want to protect the integrity of their tests, ensure they are fair for all test takers, and guard against potential security breaches.  Test takers, meanwhile, are finding documentation requirements requested by companies difficult to understand and unreasonable. Most applicants are seeking only accommodations they are already using and are frustrated to not receive the same accommodations for the tests.  For instance, the GAO cites the case of a blind test taker who was denied the use of the screen-reading software with which he was most familiar and instead was required to use an unfamiliar program, creating additional anxiety for him.  Another blind test taker complained that he was forced to use unfamiliar readers rather than ones whom he regularly used. 

According to the New York Times, test taking companies fear providing unmerited accommodations, especially extra time, to test takers who may not have legitimate disabilities. A 2000 audit of California test takers raised fears of exaggerated or non-existent disabilities due to a disproportionate number of white affluent students requesting accommodations.  Thus, companies give extra scrutiny to a “late diagnosis”; namely, one made just before or during high school, or one which occurs less than three years before the test date.  When this occurs, ACT Inc. requests “full” documentation, including a professional evaluation, an overview, evidence of early and current impairment, and the impact of current accommodations.  For some test takers, this information may be extremely difficult to access.  For instance, test takers who are diagnosed as adults are frustrated by what they perceive as impossible demands to come up with documentation from pediatricians whom they no longer see or elementary schools they attended many years earlier. 

Multiple agencies within the government are to enforce the law, but according to the GAO, they do it poorly.  The Justice Department, the Department of Education, and the Department of Health and Human Services all have responsibility for enforcement based on the ADA and Rehabilitation Act.  However, the GAO found that the Justice Department fails to make a determination on each complaint it receives because of the volume of complaints received.  Justice’s way of enforcing the law has been to rely on providing clarifications of the laws to the test taking companies.  Justice has no systematic way of investigating complaints nor do they conduct compliance reviews.  Ultimately, the GAO recommends that Justice needs to take steps to ensure a strategic approach to enforcement.  And Justice agrees.  

About half of all accommodations are requested by students who have learning disabilities.  According to the Times 2010 article, these students, however, represent only a small percentage of students taking the ACT (nearly 4%) or the SAT (about 2%).  ACT Inc. ultimately approves about 92% of requests for accommodations on the ACT, although it initially refuses about 25% of requests.  The College Board, which administers the SAT, requests additional documentation from about 20% of applicants and ultimately approves 85% of requests.  Clearly, a good percentage of test takers requesting accommodations are being asked for more information.

To prepare for this possibility, family advocates urge parents to start lining their ducks up in a row well before it is time for their child to register for these tests and start requesting accommodations.  Everything needs to be copied in the child’s special education record so the parents will have any and all information should it be requested.  Additionally, everything must be documented.  If a student is receiving any kind of accommodation, parents must be sure that it is recorded either in the IEP or 504 Plan.  It’s wonderful if a teacher is attempting to help a child by providing additional accommodations, but if it’s not written down, there is no proof that it is needed. 

The websites for the test taking companies specify the various deadlines for requesting accommodations, and parents must ensure that they are adhering to these deadlines.  Parents must also be mindful that if their child does not have a current psychological, testing (if not done by the school) must be scheduled many, many, months in advance.  Most good psychologists will have lengthy waiting lists, and no one wants their child at the bottom of the queue.  Additionally, not only do parents need to make sure that they are using an evaluator with the credentials requested by the test taking companies, they need an examiner who is experienced with advocating for accommodations for test takers.  Evaluators also need to know which diagnostic tests are needed for which exam as well as possess the most recent versions of those tests. 

The whole process of taking standardized college or graduate school entrance exams or professional licensure exams is inherently stressful, and it is unfortunate that test takers have to jump through so many hoops to request accommodations, thereby increasing their stress.  With the release of the GAO report, however, the process of requesting accommodations will hopefully become a far less arduous process for applicants.

 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.