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.
The Individuals with Disabilities Education Improvement Act of 2004 (IDEA) (P.L. 108-446) (http://idea.ed.gov/) guarantees a free and appropriate public education (FAPE) in the least restrictive environment (LRE) for every student with a disability. The LRE provision mandates that “to the maximum extent appropriate, children with disabilities, including children in public or private institutions or other care facilities, are educated with children who are not disabled, and special classes, separate schooling, or other removal of children with disabilities from the regular educational environment occurs only when the nature or severity of the disability of a child is such that education in regular classes with the use of supplementary aids and services cannot be achieved satisfactorily.” In general, inclusion (or inclusive education) with typical peers is often considered to be the best placement option for students with disabilities.
Child characteristics such as IQ and severity of autism symptoms are thought to determine educational placement. However, where a child lives may significantly impact whether they are placed in an inclusive or segregated classroom, a new national analysis suggests. The study published online in the journal Focus on Autism and Other Developmental Disabilitiesexamined external factors, including state of residence and state funding formulas, to determine their potential influence on placement outcomes. The findings revealed that considerable variations exist among states in placing students with autism spectrum disorder (ASD) in inclusive, mainstreaming, self-contained, and separate schools. Specifically, states vary substantially in the percentage of students with ASD educated in each setting, with some states trending consistently toward less restrictive settings (Colorado, Connecticut, Idaho, Iowa, Minnesota, Nebraska, North Dakota, West Virginia, and Wisconsin). Other states, however, are consistently representative of more restrictive settings (Alaska, Delaware, Florida, Hawaii, Louisiana, New Hampshire, New Jersey, New York, South Carolina, and Washington, D.C.). Furthermore, states in the Eastern United States tend to have more restrictive placement rates than states in the Western United States. State special education funding was found to have a minimal impact on placement outcomes.
These findings suggest that factors that are external to child characteristics (IQ, severity of ASD symptoms) influence educational placement decisions for students with ASD. Overall, it is unlikely that child characteristics alone determine placement outcomes. The author states that it is arguably safest to assume that the first placement for a student with ASD would be an inclusive setting. Analysis of the public data presented in this study suggests that many states are still falling short of including students with ASD in general education settings for significant portions of the day. This indicates the critical importance of shifting the argument from should we include students with ASD in general education to understanding how to include students with ASD meaningfully and successfully in inclusive settings. It is critical to identify how those practices that benefit students with ASD, including structure (visual supports, communication supports, and social supports), positive behavior supports, and systematic instruction, can be implemented meaningfully and seamlessly in general education settings. Lastly, those who place students with ASD in educational settings should determine the unique needs of the individual, and match those needs to specific supports and services that will be provided in general education settings.
Members of Congress are calling on the Obama administration to take into account the concerns of self-advocates as the federal government works to implement new autism legislation.
In a letter this week to heads of the U.S. Department of Health and Human Services and the National Institutes of Health, lawmakers said priorities expressed by people with autism should be addressed in administering programs under the recently-passed Autism Collaboration, Accountability, Research, Education and Support Act, or Autism CARES.
The law, which was signed in August, calls for $260 million annually through 2019 for everything from autism research and prevalence tracking to screening, professional training and other initiatives. It serves as a reauthorization of what was previously known as the Combating Autism Act.
“We urge you to implement the act in a manner that would address the concerns that we’ve heard and incorporate the recommendations of the self-advocacy community. Autistic individuals should have a voice in federal policy deliberations impacting their lives,” members of Congress wrote to HHS Secretary Sylvia Burwell and NIH Director Francis Collins.
The letter to the federal agencies was signed by U.S. Rep. Jan Schakowsky, D-Ill., Rep. Kathy Castor, D-Fla., Rep. Tammy Duckworth, D-Ill., Rep. Jackie Speier, D-Calif., and Rep. Paul Tonko, D-N.Y.
Specifically, the lawmakers are calling on officials to address the limited funding currently allocated toward research on services and the needs of adults on the spectrum as well as the minimal representation of people with autism on the Interagency Autism Coordinating Committee and in training programs designed to prepare students for careers in disability services.
Ari Ne’eman, who leads the Autistic Self Advocacy Network which has pushed for changes, said the new law offers an opportunity for health officials to “address long-standing inequities in federal autism policy.”
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