Missouri Advocates for Families Affected by Autism
Missouri Advocates For Families Affected by Autism
We are a citizens action group advocating and lobbying for families that have a child with special needs. We believe that EVERY child has a right to a FREE and APPROPRIATE EDUCATION and should NEVER BE LEFT BEHIND.
As the incidence rate of autism spectrum disorder (ASD) increases, so does the interest in the health and well-being of individuals on the spectrum. Similar to their typically developing peers, children and youth with ASD face increased rates of obesity and decreased engagement in physical activities. Reviews of physical activity patterns indicate that older adolescents with ASD are less physically active than their younger peers with ASD. Profiles of motor skills and physical fitness in children and youth with ASD have also documented delayed performance levels.
A research study published in the peer-reviewed journal, Autism Research and Treatmentfound that children with autism spectrum disorder (ASD) are less physically fit and active than their typically developing peers. The purpose of the study was to examine the physical activity and fitness of school-aged children with ASD in comparison to typically developing peers. Participants with ASD completed diagnostic and developmental assessments and a series of physical fitness assessments. The results indicated that children with ASD were less physically fit, in the strength domain, and less physically active than their peers without disabilities. Even though the children with ASD were less active, the researchers found that they were similarly capable in nearly all of the fitness tests. “That’s really exciting, because it means those underlying fitness abilities are there,” said Megan MacDonald of Oregon State University who coauthored the study.
The results of the study provide further evidence that children with an ASD face health differences, and that efforts to promote physical activity in school and through public health initiatives need to include children and youth with ASD. The findings also present important evidence for parents and teachers that children on the autism spectrum are capable, but may need more opportunities to be active. This has implications for intervention and program planning. For example, adapted physical activity programs are one avenue with intervention potential to battle the lower levels of physical activity and fitness found in children with ASD. Parents, teachers, and administrators are encouraged to include students with an ASD in physical fitness and physical activity assessments and provide them with individualized information about related behaviors that can impact their health into adulthood. Lastly, additional research is needed to understand why individuals with autism spend more time in sedentary activities.
Kiley Tyler, Megan MacDonald, and Kristi Menear, “Physical Activity and Physical Fitness of School-Aged Children and Youth with Autism Spectrum Disorders,” Autism Research and Treatment, Volume 2014, Article ID 312163, 6 pages.http://dx.doi.org/10.1155/2014/312163
More children than ever before are being diagnosed with autism spectrum disorders (ASD). The U.S. Centers for Disease Control and Prevention (CDC) now estimates that 1 in 68 eight year-old children has an ASD. This dramatic increase in the prevalence of children with ASD over the past decade, together with the clear benefits of early intervention, have created a need for schools to identify children who may have an autism spectrum condition. It is not unusual for children with milder forms of autism to go undiagnosed until well after entering school. In fact, research indicates that only three percent of children with ASD are identified solely by non-school resources. As a result, school professionals are now more likely to be asked to participate in the screening and identification of children with ASD than at any other time in the past.
The Individuals with Disabilities Education Act of 2004 (IDEA) and the Diagnostic and Statistical Manual of Mental Disorders, Fifth Edition (DSM-5) are the two major systems used to diagnose and classify children with ASD. The DSM-5 is considered the primary authority in the fields of psychiatric and psychological (clinical) diagnoses, while IDEA is the authority with regard to eligibility decisions for special education. The DSM-IV was developed by clinicians as a diagnostic and classification system for both childhood and adult psychiatric disorders. The IDEA is not a diagnostic system per se, but rather federal legislation designed to ensure the appropriate education of children with special educational needs in our public schools. Unlike the DSM-5, IDEA specifies categories of ‘‘disabilities’’ to determine eligibility for special educational services. The definitions of these categories (there are 13), including autism, are the most widely used classification system in our schools. According to IDEA regulations, the definition of autism is as follows:
(c)(1)(i) Autism means a developmental disability significantly affecting verbal and nonverbal communication and social interaction, generally evident before age 3, that adversely affects a child’s educational performance. Other characteristics often associated with autism are engagement in repetitive activities and stereotyped movements, resistance to environmental change or change in daily routines, and unusual responses to sensory experiences. The term does not apply if a child’s educational performance is adversely affected primarily because the child has an emotional disturbance, as defined in this section.
(ii) A child who manifests the characteristics of ‘‘autism’’ after age 3 could be diagnosed as having ‘‘autism’’ if the criteria in paragraph (c)(1)(i) of this section are satisfied.
This educational definition is considered sufficiently broad and operationally acceptable to accommodate both the clinical and educational descriptions of autism and related disorders. While the DSM-5 diagnostic criteria are professionally helpful, they are neither legally required nor sufficient for determining educational placement. It is state and federal education codes and regulations (not DSM-5) that drive classification and eligibility decisions. Thus, school professionals must ensure that children meet the criteria for autism as outlined by IDEA and may use the DSM-5 to the extent that the diagnostic criteria include the same core behaviors (e.g., difficulties with social interaction, difficulties with communication, and the frequent exhibition of repetitive behaviors or circumscribed interests). Of course, all professionals, whether clinical or school, should have the appropriate training and background related to the diagnosis and treatment of neurodevelopmental disorders. The identification of autism should be made by a professional team using multiple sources of information, including, but not limited to an interdisciplinary assessment of social behavior, language and communication, adaptive behavior, motor skills, sensory issues, and cognitive functioning to help with intervention planning and determining eligibility for special educational services.
Legal and special education experts recommend the following guidelines to help school districts meet the requirements for providing legally and educationally appropriate programs and services to students with ASD.
1. School districts should ensure that the IEP process follows the procedural requirements of IDEA. This includes actively involving parents in the IEP process and adhering to the time frame requirements for assessment and developing and implementing the student’s IEP. Moreover, parents must be notified of their due process rights. It’s important to recognize that parent-professional communication and collaboration are key components for making educational and program decisions.
2. School districts should make certain that comprehensive, individualized evaluations are completed by school professionals who have knowledge, experience, and expertise in ASD. If qualified personnel are not available, school districts should provide the appropriate training or retain the services of a consultant.
3. School districts should develop IEPs based on the child’s unique pattern of strengths and weaknesses. Goals for a child with ASD commonly include the areas of communication, social behavior, adaptive skills, challenging behavior, and academic and functional skills. The IEP must address appropriate instructional and curricular modifications, together with related services such as counseling, occupational therapy, speech/language therapy, physical therapy and transportation needs. Evidence-based instructional strategies should also be adopted to ensure that the IEP is implemented appropriately.
4. School districts should assure that progress monitoring of students with ASD is completed at specified intervals by an interdisciplinary team of professionals who have a knowledge base and experience in autism. This includes collecting evidence-based data to document progress towards achieving IEP goals and to assess program effectiveness.
5. School districts should make every effort to place students in integrated settings to maximize interaction with non-disabled peers. Inclusion with typically developing students is important for a child with ASD as peers provide the best models for language and social skills. However, inclusive education alone is insufficient, evidence-based intervention and training is also necessary to address specific skill deficits. Although the least restrictive environment (LRE) provision of IDEA requires that efforts be made to educate students with special needs in less restrictive settings, IDEA also recognizes that some students may require a more comprehensive program to provide FAPE.
6. School districts should provide on-going training and education in ASD for both parents and professionals. Professionals who are trained in specific methodology and techniques will be most effective in providing the appropriate services and in modifying curriculum based upon the unique needs of the individual child.
Mandlawitz, M. R. (2002). The impact of the legal system on educational programming for young children with autism spectrum disorder. Journal of Autism and Developmental Disorders, 32, 495-508.
National Research Council (2001). Educating children with autism. Committee on Educational Interventions for Children with Autism. C. Lord & J. P. McGee (Eds). Division of Behavioral and Social Sciences and Education. Washington, DC: National Academy Press.
Yell, M. L., Katsiyannis, A, Drasgow, E, & Herbst, M. (2003). Developing legally correct and educationally appropriate programs for students with autism spectrum disorders. Focus on Autism and Other Developmental Disabilities, 18, 182-191.
The dramatic increase in the number of students qualifying for special education under autism in our schools may have been caused, in part, by vague definitions together with ambiguous, variable, and irrelevant evaluation procedures, according to a study published in the open access journal, Autism Research and Treatment. The study examined the definition of autism published by each state education agency (SEA) and the District of Columbia, as well as SEA-indicated evaluation procedures for determining student qualification for autism. The researchers compared components of each SEA definition to aspects of autism from two authoritative sources: Diagnostic and Statistical Manual of Mental Disorders (DSM-IV-TR) and Individuals with Disabilities Education Improvement Act (IDEA-2004). They also compared SEA-indicated evaluation procedures across SEAs to evaluation procedures noted in IDEA-2004.
The results indicated that many more SEA definitions incorporate IDEA-2004 features than DSM-IV-TR features. However, despite similar foundations, SEA definitions of autism displayed considerable variability. Many of the definitions were too vague to be of much use. Evaluation procedures were found to vary even more across SEAs. There often was little concordance between the definition (what autism is) and evaluation procedures (how autism is recognized). Definition components often were not addressed by evaluation features, even in a cursory way. One of the least recommended evaluation features was the requirement to administer an autism-specific evaluation as part of the eligibility process. Of the SEAs that included an autism assessment in the evaluation process, none specified the use of a recognized instrument such as the Autism Diagnostic Observation Schedule (ADOS) or the Childhood Autism Rating Scales (CARS). Although several of these SEAs did indicate the required use of a state-created autism checklist, none gave any reference to a source or psychometric characteristics of those checklists
Recommendations for state and federal policy changes are discussed. For example, the researchers suggest that the publication of DSM-5 provides SEAs with the opportunity to expand and update their current definition of autism. They note that the DSM-5 criteria encompass all of the elements stated by the current IDEA definition with the exception of allowing for the coexistence of potential emotional disorders. The DSM-5 also recognizes the salience of sensory processing problems and the possibility of coexisting (comorbid) mental health disorders. The study recommends that SEAs consider elements of DSM-5 autism spectrum disorders as they consider revisions to their state definition of autism and corresponding procedures by which assessors will provide data for eligibility determination. Likewise, IDEA-2004 is overdue for Congressional reconsideration and possible amendment, so there is an opportunity to also update and clarify the federal educational definition of autism. Improved, more specific definitions and evaluation procedures will enable SEAs and school districts to better serve students with autism and better allocate resources.
Malinda L. Pennington, Douglas Cullinan, and Louise B. Southern, “Defining Autism: Variability in State Education Agency Definitions of and Evaluations for Autism Spectrum Disorders,” Autism Research and Treatment, vol. 2014, Article ID 327271, 8 pages, 2014. http://dx.doi.org/10.1155/2014/327271
The U.S. Supreme Court is asking the Obama administration to weigh in on a case involving who should pay for private school tuition while special education disputes are litigated.
The high court asked the U.S. solicitor general on Monday to provide an opinion on a case known as Ridley School District v. M.R. which centers on the “stay-put” provision of the Individuals with Disabilities Education Act.
Under the law, school districts must pay for students to remain in their existing educational placements while special education disputes between parents and schools are sorted out.
However, the Ridley School District in suburban Philadelphia — joined by a handful of education groups — is arguing that a district’s obligation to pay for a private placement should end once a court rules in the schools’ favor, no matter if a child’s parents continue to pursue their claims.
The issue arose in the case of a child known as E.R. in court papers. The U.S. Court of Appeals for the Third Circuit in Philadelphia decided earlier this year that the Ridley School District remains responsible for private school tuition for E.R. while the child’s family continues to appeal their dispute even though a lower court found in favor of the district.
The Ridley School District was joined this summer by the National Association of State Directors of Special Education, the National School Boards Association and the Pennsylvania School Boards Association in asking the Supreme Court to take up the issue.
Rather than accept or decline the case, however, the Supreme Court signaled on the first day of its new term that it will seek input from the nation’s solicitor general before determining whether or not to consider the “stay-put” provision
TAMPA, Fla. — A chance meeting in a Sarasota restaurant put Amanda Taylor, the mother of a student with special needs, in touch with activist Jon Singer.
Taylor described the frustration she was having getting her daughter the services she needed at Robinson Elementary School in Plant City.
Singer, who works in financial services and splits his time between Sarasota and New Jersey, offered to put her story on his Facebook page. Taylor approved the scathing diatribe against the Hillsborough County School District, packaged with pictures of 8-year-old Alexis.
“The day I went public, the school knew,” said Taylor, a divorced mother of four. “Within five hours, the principal, ESE (exceptional student education) specialist and teacher told me, ‘We’re on your side, Amanda.’ I just couldn’t believe what was coming out of their mouths.”
Social media shaming increasingly is a tactic parents employ when calling, emailing or sitting through individualized education program, or IEP, meetings does not get the results they seek.
School officials say they do what is best for children, according to the law and best practices, regardless of what parents might say on social media.
But some parents believe otherwise. Taylor says her campaign got fast attention for Alexis, who has spina bifida, although the issues are far from resolved.
In South Tampa, Henry Frost, who has autism, was able to attend his neighborhood school after a Facebook campaign in late 2012.
“I Stand With Henry,” which featured a video that paid homage to Dr. Martin Luther King Jr., was Henry’s idea, said his mother, Lauri Hunt. “It’s his platform,” she said.
In recent weeks Henry posted that Wilson Middle School took him off the rolls after he missed too many days because of medical issues. On Sept. 16, Henry posted that he’s back in Wilson.
Alexis’ issue was not placement but services. Taylor said her daughter is on-level intellectually but behind academically. She says the trouble started in kindergarten, where Alexis was in a class of children with disabilities. “Every time I came in they would be painting or watching movies,” she said.
In the older grades there were disagreements over whether Alexis could get out of her wheelchair and walk with her leg braces, and whether the staff was putting the braces on her properly. Taylor said Alexis was excluded from recess and did not get resources she needed to catch up academically.
School officials are prohibited by law from discussing individual students publicly, so these accounts come entirely from the parents. The Tampa Bay Times attempted to discuss the social media shaming tactic with Hillsborough County School District’s ESE general manager Maryann Parks, but she declined “because it doesn’t have any effect,” said spokesman Stephen Hegarty.
Federal law assures children with special needs a free, appropriate public education in the least restrictive environment.
But those terms are open to interpretation. School officials often consider special schools, or special classes that are in some schools but not others, both appropriate and safe.
Advocates of inclusion often push for students to be mixed in with their peers who don’t have disabilities, with aides to support them. Although the district gets federal funding for its roughly 29,000 students with special needs, officials say that funding does not cover all expenses. At the same time, district officials typically say their decisions are not affected by cost.
Singer fought his own very explosive battles with the school district of Tenafly, N.J. “I don’t even call them animals,” he said of the school officials. “It’s like an insult to dogs.”
He created a Facebook page. “I had 8,000 followers,” he said. “People started saying ‘I need your help.’ Others said, ‘I’d like to help.’ “
Taylor’s story appeared on Singer’s page, Drive4Rebecca. He takes most of the credit for terms like “HELLSborough County” and MaryEllen EVILia,” for superintendent MaryEllen Elia. He called her the “Torturer in Chief.”
If Elia and her staff were offended, Taylor said she is fine with that. “I’m offended about the way they’re treating my child,” she said.
Immediately after the posting, she said, the school staff met with her to learn how to put Alexis’ braces on properly. They offered math materials she could use to help Alexis at home, but she said they didn’t follow through and numerous issues remain. “It’s been up and down,” she said.
Singer said he advises parents to “get people involved from day one, the minute you start emailing the superintendent about your child. That way it’s out there.”
Too often, he said, parents assume it’s a zero-sum game, with enough money available for only some children. Or they fear retaliation.
School districts “have lawyers on their side,” Singer said. “It’s so stacked in their favor and the majority of people don’t know their rights and they can’t afford a lawyer.”
Hegarty, of the Hillsborough County School District, said families have many avenues of recourse without resorting to public attacks.
“Parents have lots of different ways to try to communicate: phone calls, emails, calling reporters, calling board members. And now social media,” he said.
“The best way to affect the decision is to sit down in an IEP meeting or other meeting and work with the school district. We have dedicated, caring people who work with families every day and work hard to get to ‘yes’ on some very complicated cases.”
If you want safe, non-neurotoxic vaccines for everyone, given in an independently tested and verified schedule and combination, you are “anti-vaccine.”
If you want transparency, accountability, and ethical science when it comes to vaccines, you are “anti-vaccine.”
If you believe those who profit from vaccines should not be in charge of vaccine policy or research, you are “anti-vaccine.”
If you believe you should have the right to informed consent, and that not all vaccines are created or needed equally, you are “anti-vaccine.”
If you believe we should study those who have reacted negatively to prevent problems for others in the future, you are “anti-vaccine.”
If you believe you have the right not to inject yourself with something made using aborted fetal cell lines because it goes against your faith, you are “anti-vaccine.”
If you believe the program has been derailed by special interests ever since they received federal liability protection, and that liability protection should be amended to apply only in times of emergency (if at all), you are “anti-vaccine.”
If you believe science can easily be bought and paid for, and that you have not only the right but also the responsibility to read it and question it, you are “anti-vaccine.”
If you are a journalist investigating or reporting on CDC malfeasance regarding vaccine policy and research, you are “anti-vaccine.”
If you are a politician doing the same, you are “anti-vaccine.”
If you tell others to educate themselves about the risks and benefits of vaccines, you are “anti-vaccine.”
If you tell others what happened to someone you know or love after they vaccinated, you are “anti-vaccine” (and a liar and dangerous).
If you believe corruption is possible in any entity, private or public, and that it needs to be exposed and weeded out wherever it is, you are “anti-vaccine.”
If you believe 100 years is long enough to start studying the vaccinated versus never vaccinated to see if maybe, just maybe, we have created some unintended consequences, such as swapping infectious disease for chronic disease . . . and hey, you’d really like to know that . . . you are “anti-vaccine.”
If you believe ALL children’s lives are valuable, not just those who appear to have tolerated the vaccine program well, you are “anti-vaccine.”
If you believe the science you paid for as a taxpayer should be available to you and not shipped overseas or destroyed or withheld because the results are suspicious, you are “anti-vaccine.”
If you think a wanted felon’s research being used for policy and legal decisions on something as important as the vaccines that you are giving to your children is a problem, you are “anti-vaccine.”
If you believe a parent knows his or her child better than anyone, and that your first responsibility is to him or her and not society, you are “anti-vaccine.”
If you would object to a public health official coming to your house today and saying you can’t leave your home for any reason until you get all of your adult boosters, you are “anti-vaccine.”
If you believe a person shouldn’t be forced to have a medical procedure that could possibly hurt or kill them, or go against their conscience, in order to keep their job, you are “anti-vaccine.”
If you think it’s insane that you can go to a grocery store and get a vaccine from a person who doesn’t know you or your health history, and who doesn’t tell you your rights, what to do if something goes wrong, or that you can’t sue them, the store, or the pharmaceutical company if they maim or kill you, you are “anti-vaccine.”
If you think it’s equally insane that if a Thimerosal-containing flu shot vial is dropped or spilled in that grocery store, the store has be evacuated and a Hazmat team has to come and clean it up because of the mercury in it, but that grandma should roll up her sleeve and inject it for 10% off her bill because it’s the “safe mercury,” you are “anti-vaccine.”