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.

Sunday, March 30, 2014

Lee's Summit R-7 School District: Inappropriate "Services"

Lee's Summit R-7 School District: Inappropriate "Services"

I have contacted many people, in the Lee's Summit school district, and none of their children are receiving appropriate social skills training for autism.

Social skill is not a “service” but a functional skill necessary for daily living activities. Learn what the IDEA, the federal regulations, and the Commentary say about Present Levels of Functional Performance and IEP goals for functional skills.
Read Pat Howey’s article What You Need to Know About IDEA: Present Levels of Functional Performance and Functional Goals in IEPs.http://www.wrightslaw.com/howey/iep.functional.perf.htm
Your child’s IEP must include a description of her Present Levels of Academic Achievement and Functional Performance. This means what her strengths and weaknesses are – both in academics and in functional areas like social skills.
If your child has “functional needs” the school must meet these and address these needs with goals in the IEP.
Questions to Ask
Remember, you are part of the IEP team. You have input about your child’s needs and what services may be needed to meet these needs.
Does your daughter have challenges in the social skills area?
Is her weakness in social skills accurately described in the Present Levels?
Does her IEP include goals about how the school will meet these challenges?
Do the goals meet her needs?
Is she making measurable progress toward these goals?
You need to request a meeting of the IEP team to discuss your concerns and to review and revise the IEP.

Reorganized School District No.7
301 NE Tudor Road
Lee's Summit, Missouri 64086-5702
Phone: (816) 986-1024 Fax: (816) 986-1160
Jerry L. Keimig
Executive Director of Special Services

December 22, 2008

Ms. Heidi Atkins Lieberman
Assistant Commissioner
Division of Special Education
Missouri Dept. of Elementary and Secondary Education
PO Box 480
Jefferson City, Missouri 65102-0480

Dear Ms. Lieberman:

This letter is in response to concerns expressed by OSEP regarding Ms. Tucker. Ms. Tucker has responded to staff in our District with a continual barrage of emails and web postings on a variety of topics expressing concerns, sending general information regarding special education issues, and conducting personal attacks on staff.  (It was my intention to offer information on the appropriate services for a child with autism.  Many of my emails were ignored unless I sent several requesting responses.)

Ms. Tucker continually voices her concerns regarding educational programming for her son. We would agree that he has specific areas that need to be addressed, but despite multiple District attempts to provide direct interventions for her son, she has refused many of these services. We have even developed additional course offerings in response to her concerns, but once in place, she has refused to allow her son to access programming. It appears that Ms. Tucker is more interested in a personal attack on the individuals responsible for providing educational services rather than accessing existing services designed to provide educational benefit for her child.  (This is totally inaccurate.  I sent a “continual barrage of emails” with research on why these programs were not appropriate.  I have been personally attacked by the district and this letter is a perfect example.  They did not develop an additional course for my son.  They wanted to put him in a class with children that had were emotionally disturbed and then grade him on his social progress.  How can they begin to believe that could be appropriate?)

It is the Lee's Summit R-7s School District stance that we have been extremely responsive to the concerns of Ms. Tucker having devoted hundreds of hours to discussion of said concerns and viable solutions. We would welcome an opportunity to present the district view to an independent panel either through a DESE child complaint or a due process hearing.  (They want me to go to due process because they think that they can weaken my resolve.)

C: Dr. David McGehee

Social Skills Groups: What Does the Research Tell Us?
Autism Spectrum News
The Promise of Research
Fall 2008, Vol.1, No. 1
Lynda Geller, Ph.D.
Asperger Institute
NYU Child Study Center

Social skills deficits are considered to be one of the critical diagnostic impairments that define autism and Asperger Syndrome, so it perhaps not surprising that both school personnel and clinicians in the community frequently recommend that a child or adolescent on the autism spectrum should be enrolled in social skills groups. The intention of such groups is to improve the development of these skills that often are so compromised. Yet just how much research evidence exists supporting the effectiveness of social kills groups as they are currently being delivered? The goals of this review are to summarize what the research tells us regarding efficacy of group social skills development models and to suggest to families what they should require from those delivering this kind of service.

Social skills are critical to successful adult outcome, from having rewarding personal relationships to academic and vocational accomplishment to overall mental health and quality of life. When considering these issues for the individual with an autism spectrum disorder we must be cognizant of the developmental nature of these conditions. Individuals on the autism spectrum have underlying brain differences that affect how they experience the world. In turn, experiences in life have direct consequences on ongoing brain development. So the outcome of any child’s development is the sum total of underlying assets and deficits and the life experiences that continuously shape all of us and directly impact brain development. That is why early intervention is such a powerful tool. It actually shapes brain development during critical periods and individual outcome can be profoundly affected by having or not having these kinds of experiences.

Those of us who work intensively with children with autism continually witness how autism unfolds and how the lack of certain experiences contributes to the ultimate outcome of each one of them. For example, it is not uncommon for parents to tell us that their child has never had a friend. While this is painful in and of itself, the developmental ramifications are significant. Peer interactions are necessary to develop the skills for maintaining conversation, taking perspective, playing appropriately, controlling emotional expression, negotiating conflict, and experiencing intimacy. Without these experiences in childhood, establishing a positive adulthood is very difficult. So, the child with the developmental differences of autism suffers the additional burden of limited experience in critical areas, resulting in what we so often see in young adults as inability to establish relationships or maintain a job and personal independence.

Therefore it is no wonder that so many clinicians and educational professionals try to provide development in the area of social skills. We all know it is critical for successful adulthood. But is what is being typically provided in schools and clinics effective in improving essential social skills?

Very recently, four significant reviews of social skills interventions have been published (White et al., 2007; Rao et al., 2008; Matson et al., 2007; Bellini et al., 2007.) They provide guidelines for assessing social skills groups as they have been implemented and give us important standards for assessing whether critical qualities exist in what is being currently offered.

White, Keonig & Scahill describe their concern with social skills development as being based on findings that social skills deficits do not remit but become more devastating with age as the social milieu becomes more complex; that children in inclusive settings are often more rejected and isolated, yet are not given the skills to succeed; and that social skills deficits contribute to academic and occupational underachievement and later mood and anxiety problems. Given these outcomes, high quality social skills interventions are crucial. Fourteen studies were identified that addressed group intervention for children and adolescents identified as having an autism spectrum disorder (ASD.) All studies had very small sample sizes (ten or less.) Only two studies utilized a manualized approach specifically developed for individuals with an ASD while others used techniques developed for other populations. Others simply described their approaches in greater or lesser detail. Only five studies included a comparison group and none used randomized assignment to treatment group.

None of the studies could be considered an effectiveness study, that is, one that examines the generalizability of gains to other settings. White et al. concluded that the state of research about social skills groups is still in its infancy.  However, they identified some promising strategies, based on what was demonstrated in the studies that should be considered in future program development. These include stimulating social motivation, rewarding social initiation, reinforcing appropriate social responding, treating interfering behaviors, and providing opportunities for skill generalization. Their strongest recommendation was that we need to develop and validate manualized social skills curricula to be utilized in schools and community-based groups.

Rao, Beidel & Murray reviewed papers evaluating social skills training programs for youth with Asperger Syndrome or high functioning autism to assess their efficacy and make recommendations for future research directions. They examined ten studies of high functioning children on the autism spectrum as such students are more likely to be in inclusion settings where the social demands are more intense. They found that current research is lacking in the following areas: establishing a common definition of what comprises social skills; conducting research that includes having control groups to compare outcomes and having blind observers to evaluate results; generalizing techniques to other settings; and conducting long term follow-up to determine if an intervention had any effects on eventual outcome. They recommended that future studies utilize manualized treatments specific to particular social deficits (e.g. simple interaction versus relationship development,) that more rigorous research designs be employed to assess effectiveness, and that generalization beyond the office be specifically implemented and measured. As in the previous review, these authors noted that the feasibility of improving social development through group instruction has been demonstrated, but the specific methods need further research.

Matson, Matson & Rivet examined a wide range of social skills interventions for children with ASDs of all functioning levels. In their review of seventy-nine treatment studies, they generated specific recommendations of what is required for the field to move forward toward more validated and specific social skills treatments.

They suggest:

• Parent training models to improve generalization and to make intervention available for younger children,
• Programs that address interfering behaviors or comorbid disorders (such as severe anxiety,)
• Interventions for children under six years of age whose brains have greater plasticity and who should be developing skills they can practice throughout elementary school,
• Need-specific programs that can differentiate between those who need very basic versus more advanced skill development,
• Consistent use of measurements in existing school and community social skills programs to assess if participants are meeting their specified goals.

Bellini, Peters, Benner & Hope reviewed social skills interventions being delivered in school settings. As social skills development is almost universally stated as a goal for special education students with ASDs, this is a particularly critical area to examine. A meta-analysis of fifty-five single-subject design studies was conducted to formulate some generalizations about treatment effectiveness of programs as they are currently being delivered in schools and to specify what approaches seem to offer the best potential. Bellini et al. reiterate that there is only minimal evidence that social skills training programs are effective for children in general, let alone for those for whom social deficit is the defining attribute.

The most important conclusions of this review were that social skills interventions in schools, as they are being reported in the literature, have low to questionable treatment and generalization effects and moderate maintenance effects. That implies that most treatments were not particularly effective in changing social behavior or affecting any changes that generalize across settings, but that any changes that occurred were somewhat maintained. The studies were then assessed by approach with the general findings that interventions need to be more intensively implemented, that they should occur in context rather than in an office, that the strategy should match the specific skill deficit, and that validated treatments should be implemented by clinicians trained in the specific intervention to insure effectiveness. The findings of this analysis were discouraging and implied that much of what is now being done for students with ASDs in schools may be rather ineffective.

Given the limited research evidence for the effectiveness of group social skills interventions, what are responsible recommendations? For community-based interventions, parents should ask the following questions:

• Is there a manualized, evidence-based curriculum or a well-designed, explicit program with specific goals?
• Do the proposed group members have similar needs that are being addressed specifically?
• Do the target behaviors being addressed make sense for each member?
• Is generalization to real-life settings being designed as an integral part of the program?

As children with ASDs typically lack good generalization skills, it is necessary to provide more specific opportunities for practice in realistic settings. This can be implemented through parent involvement with each session’s lesson, rehearsal and reinforcement homework for members, and prescribed member interaction between sessions. Interventions can also take place in actual life locations. Of importance, as well, is the therapist’s orientation to achieving measurable goals.

Does the group leader

• Assess each member’s needs before inclusion in the group?
• Have plans for assessing effectiveness?
• Consider the family’s specific desires for skill acquisition?
• Assess satisfaction with the service at the conclusion?
In-school services also need to be examined. Families should request that
• Services be very specifically described on the student’s individualized educational plan
• Those delivering the services have knowledge about both social skill development and the specifics of delivering such services to children on the autism spectrum
• Services be of sufficient intensity to be effective
• School personnel are utilizing evidence-base practice
• Interventions are being delivered in authentic locations such as playgrounds, classrooms, and lunchrooms, rather than only professional offices.
Sometimes parents do not feel sufficiently knowledgeable or empowered to request the services their child truly needs to promote the best outcome. It is important for parents to be wise consumers by
• Requesting specific plans and generalization strategies
• Learning how to reinforce social skills through play dates and get togethers
• Helping their child maximize strengths and interests in social settings
• Negotiating with school treatment teams to implement a true social skills program that is individually designed and data-driven.

Meanwhile, professionals who specialize in autism and Asperger Syndrome can help families gain awareness of the current state of knowledge; understand what they as parents can specifically accomplish with their children; and know what critical questions to ask of anyone currently providing social skills intervention in schools or community. Together, parents and professionals should continue to advocate for more treatment-based research on social skills development now.

Bellini, S., Peters, J.K., Benner, L., & Hopf, A. (2007) A meta-analysis of school based social skills interventions for children with autism spectrum disorders.
Remedial and Special Education, 28(3), 153-162.
Matson, J.L., Matson, M.L., & Rivet, T.T. (2007) Social-skills treatments for children with autism spectrum disorders. Behavior Modification, 31(5), 682-707.
Rao, P.A., Beidel, D.C., & Murray, M.J. (2008) Social skills interventions for children with Asperger’s syndrome or high-functioning autism: A review and recommendations. Journal of Autism and Developmental Disorders, 38(2), 353-361.
White, S.W., Keonig, K., & Scahill, L. (2007) Social skills development in children with autism spectrum disorders: A review of the intervention literature.
Journal of Autism and Developmental Disorders, 37(10), 1858-1868.

Friday, March 28, 2014

Lee's Summit R-7 School District: Autistic Students

Lee's Summit R-7 School District: Autistic Students

Today, the CDC has now announced new numbers in autism prevalence: 1 in every 68 children under the age of 21 has autism, 
including 1 in every 42 boys. This is a 29% increase since the last update (1 in 88 in 2012).

The last time that I was able to get the information, Lee's Summit had 17,559 students. 150 of those students had an educational diagnosis of autism.  Another 250 had a medical diagnosis. If the CDC is correct it would mean the Lee's Summit would potentially have 258 students with autism.  

This means that there are potentially 158 autistic students that are not being served.  Following is the law in Missouri and the facts on how well educated the persons making decisions are.  In Missouri a person designated as an autism specialist decides your child's educational diagnosis regardless of how many doctors disagree or have diagnosed otherwise.

Best Practice Guidelines: There are currently no best practice guidelines to 

help bring consistency in the therapies and methodologies used by local 

school districts. However, the lack of such guidelines is a symptom of a larger 

problem – the absence of a database and statewide data collection system to 

help classify the specific issues faced by each individual child. The database 

could also be used to identify helpful treatments and to scientifically support 

the appropriate use of various methods of intervention, treatment, and 


Eligibility: All public education programs for special education students 
contain eligibility criteria. IDEA Part B allows school districts to determine 
eligibility of students for services. Although students may already have 
received a formal medical diagnosis of ASD, some districts insist on 
performing their own assessment to determine eligibility for services, which is 
often labeled an “educational diagnosis.” Some parents and providers 
testified that they view the educational diagnosis as a bureaucratic method for 
the school district to deny services to some children. 
Program Conflicts: For students with ASD with more severe behavioral 
issues, parents testified that some school districts have failed to address and 
consider a student’s neurological and mental health status, and have 
employed methods intended for students whose behaviors are not the result of 
a disorder like ASD. Such methods include isolation or suspension from 
school under the criteria established by the Safe Schools Act. 

The Blue Ribbon Panel recommends that the Department of Elementary and 
Secondary Education solicit proposals to design a data collection system to 
support analysis of ASD intervention across the lifespan (evidence-based therapies 
or teaching practices) and costs of serving children with ASD organized by 
appropriate classifications. 
It is recommended that the data collection system be created for all students with 
ASD using the state-wide identification number and be submitted to the Department 
of Elementary and Secondary Education. Access to the data should be granted to 
appropriate public school personnel, qualified researchers in the field, and 
individuals specifically authorized by statute or rule. 

The Blue Ribbon Panel recommends that local school districts inform parents of 
the importance of having a service coordinator from the Department of Mental Health present at the IEP meeting that takes place around the fourteenth birthday 
of a child with ASD. The Department of Mental Health can begin to develop 
transition goals for the child, and determine which state agencies should be 
contacted while fostering stronger relationships with the child and his or her 
family. The child’s family or legal guardian would have the right to exclude this 
individual from the IEP meeting. 

The Blue Ribbon Panel recommends that the state of Missouri develop and 
implement best practice guidelines for educational assessments and interventions. 
Evidence-based best practice guidelines for effective educational assessment and 
interventions for ASD should be developed and disseminated broadly to act as a 
resource for Missouri school districts. 
B. Missouri’s Implementation of the Individuals with Disabilities Education Improvement 

The Blue Ribbon Panel recommends that Missouri allow equivalent funding to 
follow the student to the provider of the parent’s choosing. Having options for 
treatments or services empowers parents and encourages the General Assembly to 
explore models of choice in educational services. The General Assembly should 
investigate the merits of ASD scholarships, open enrollment for students with 
ASD, public and private partnerships, and any other educational opportunities for 
students with ASD, students with developmental disabilities, or students with 
developmental delays. 
F. Educational Diagnosis 
While it is clear that the evaluation of children conducted by educators is not done to 
“diagnose” the child, but rather to see if and how the diagnosis of ASD adversely 
impacts the child’s education, there is considerable misunderstanding created by the 
requirement to “make an educational diagnosis.” 

In Missouri, there are two ways for a child to be eligible for services under the federal 
IDEA. First, a child can have characteristics of a particular disorder, such as ASD, 
that grants automatic eligibility. Second, children can be eligible for early 
intervention services between the ages of birth and 36 months by having a 
developmental delay, defined as functioning at half the developmental level that 
would be expected for a child developing within normal limits and of equal age. The 
Blue Ribbon Panel heard numerous concerns about this requirement, including the 
perception of how it limits high-functioning individuals with ASD, who need the 
social and communicative services that are not otherwise available to them. 

Public education programs for special education students require students to meet 
eligibility criteria to qualify for services. Some children come to the school district 
seeking services with a medical diagnosis of ASD. Under IDEA, the school district 
is to consider the medical diagnosis and determine whether that diagnosis requires 
any educational intervention or supports. Testimony indicated a perception problem 
and semantics issue involving this process. Although the school district is not to 
dispute that a medical diagnosis has been made, many special educators and school 
districts use the term “educational diagnosis” to describe the process by which they 
determine whether educational intervention is required. In this way, it appears to 
parents that the school district is conducting its own diagnosis of the child and is 
making a different decision than the multi-disciplinary diagnosis team previously 

AUTISM CONSULTANT: Missouri does not have such an educational designation.  However, there is a three-tiered system of Project ACCESS autism educational consultants described below.
IN-DISTRICT AUTISM CONSULTANT (IDAC):  A certified teacher with a minimum of two years classroom experience is selected by his or her school district’s administration to attend the Introduction to Autism training either in a face-to-face format or the online format through Project ACCESS’ Community of Practice site. In addition to the Introduction to Autism training, attending the Working with Autistic Students in the Schools (WASS) OR Early Intervention for Young Children With Autism (EIYCA)training is also required. These trainings enable the teacher to attend the Autism Consultant Training (ACT). An administrator must send an endorsement letter indicating the school district’s intention to use that person as their In-District Autism Consultant (IDAC). School districts may have as many IDACs as is deemed appropriate for the district’s needs for a staff member to consult with colleagues serving students with ASD in their own districts. Project ACCESS will provide each IDAC with a nametag and maintain a participant database.  If the IDAC moves to another Missouri school district, the new district can make a written request to Project ACCESS and the IDAC status can be transferred to the requesting district.
Each person attending the In-district Autism Consultant training must complete a separate registration form.  Candidates may register online using My Learning Plan. 
  • Training Dates: June 16, 17 and 18, 2014.
  • Training Times: Registration is from 8:00 to 8:30 on the first day and training begins at 8:45 and lasts until 4:00.  On day two and three, training begins at 9:00 and ends at 4:00.

You can do the math.  Three days of training 

and you are in charge of making decisions 

that will affect a person's entire life.  Forget 

the eight years of school that the doctor 


Wednesday, March 26, 2014

Daily Press - Hampton schools sued $7.5 million over sexual assault

Daily Press - Hampton schools sued $7.5 million over sexual assault

HAMPTON — The parents of a special needs student at Kecoughtan High School are suing the city of Hampton and its school system for $7.5 million, alleging that "gross negligence" and staffing shortages resulted in their daughter getting sexually assaulted in a classroom last year.
The suit contends that a Hampton schoolteacher and another staffer knew the couple's autistic daughter required constant supervision. But in the morning of May 29, the suit alleges, the teacher went to a meeting and left the student alone in a classroom.
"While (the student) was left unsupervised, a male student came in and sexually assaulted her," said the suit, filed in Hampton Circuit Court by attorney Jeffrey A. Breit on behalf of the student's parents, Adam and Laura Ann Flores.
In an interview Friday, Breit added: "He was just walking by the classroom, sees her, and comes in."
The City of Hampton and Hampton School Board are accused of failing to provide adequate funding and staffing for special needs students "in gross violation of their duties to provide such students with a free appropriate public education."
Also named as defendants are Hampton City Schools as well as Kathleen Lassiter, a teacher at Kecoughtan, and Frances Brewster, a special education assistant.
The sexual assault, the suit says, was the "direct result" of the "gross negligence" of the city, School Board, school division, Lassiter and Brewster, wrote Breit, with the Virginia Beach firm of Breit, Drescher, Imprevento & Walker.
The city and School Board "failed to allocate sufficient funds for special education for the Hampton Public Schools on behalf of disabled students, in gross violation of their duties to provide such students with a free appropriate public education," the suit says.
Diana Gulotta, a spokeswoman for the school system, declined Friday to comment on the suit on behalf of the school system or staff. Hampton Chief Deputy City Attorney Jeff Sachs also declined to immediately comment.
Lassiter and Brewster couldn't be reached.
Police charged the former student, Joseph Aguilar Jr., now 20, with aggravated sexual assault on an incapacitated person, said Hampton police spokesman Sgt. Jason Price. A court hearing on that felony charge is set for May.
The Daily Press is not naming the woman — who is now 21 — because the newspaper's policy is not to name sexual assault victims. The paper is naming her parents, however, because they are seeking millions of dollars from the city and school division.
According to the lawsuit, the student has a low IQ and a level of autism that "significantly impairs her social and occupational functioning, her social interactions and her judgment" and her "ability to manage her person."
"Her attention is easily distracted, and she wanders off easily, thus making her vulnerable to people who mean to do her harm," the suit says.
The suit says that the student had an individualized education plan in place in which she was to be escorted "curb to curb" from home to school, and get her own assigned assistant throughout the school day. The lawsuit asserts that Brewster was to be her daily escort, but for some reason she "stopped meeting (the student) upon her arrival" at the bus stop at some point during the year.
Instead, the suit says, the student would walk from the school bus into school by herself, and find her way to Lassiter's classroom, where she was assigned the previous year. Brewster would meet her there and take her to her current classroom.
But on the morning of May 29, the suit asserts, Lassiter left for the meeting before Brewster arrived.
The actions of Brewster and Lassiter were "in reckless and willful disregard for her safety," the suit contends. Moreover, the suit contends a failure to allocate sufficient special education funds left the student "vulnerable to attack."

BPD investigating parent's claim her daughter was tied up in a McKinley Elementary School bathroom - 23ABC News

BPD investigating parent's claim her daughter was tied up in a McKinley Elementary School bathroom - 23ABC News

BAKERSFIELD, Calif. - A parent of a special needs child attending McKinley Elementary School says a teacher tied up her daughter and left her in a rest room last week.
The family said the school district called them Monday to inform them about how the child was disciplined the week previous. The family then called the police to make an official complaint and took their child out of school.
Bakersfield police has been at the school for several hours Tuesday investigating. Bakersfield Police officials said they are in contact with the parents and the school. They are making a preliminary investigation into the matter.
"I want to know why my daughter was restrained in the bathroom left by herself last week and I just found out about it yesterday," Esmeralda Diaz the student's parent.
While 23 ABC was interviewing Diaz at her home in Northeast Bakersfield,  the teacher who allegedly put a child in the bathroom called to ask why her daughter has not been in school.
Diaz told the teacher that she is not bringing her child back to the school ever.
"I thought my daughter was safe at the school and she's not," said Diaz.
BPD officials said there were no injuries to the child.
BPD officials said it was a matter of teacher training, and not a criminal investigation.
School district officials said it is early on into the matter of these allegations. They said they are making a preliminary investigation. The teacher has not been disciplined and is not leave.

Thursday, March 20, 2014

Federal grant targets special education teachers, administrators | EdSource Today

Federal grant targets special education teachers, administrators | EdSource Today

As part of a national effort to improve instruction for children with learning, behavioral, physical and other disabilities, the California Commission on Teacher Credentialing has been awarded a $200,000 federal grant for an intensive review of training for the state’s teachers and administrators – in both general and special education settings. 
Funded by the U.S. Department of Education, the grant is part of a $25 million, five-year push by the federal Office for Special Education to roll out special education reforms in 20 states, including this newly announced effort in California. The federal push began in 2012 with the creation of theCollaboration for Effective Educator Development, Accountability and Reform, a University of Florida-based technical assistance center that awarded the grant to the California Commission on Teacher Credentialing and will work closely with the state effort. The collaboration group’s primary partner is the American Institutes for Research.
Among the items for review in the California collaboration, which will extend through 2017, are curricula at the colleges of education, credentialing standards for teachers and administrators in both general and special education, and measurements of successful educator training programs, said Mary Brownell, professor of special education at the University of Florida and director of the Collaboration for Effective Educator Development, Accountability and Reform.
Because many students with disabilities spend most of their day in a general education classroom, Brownell said that all teachers need to be familiar with research-based techniques used to teach reading to students with learning disabilities and to manage the behavior of students with mental health issues. Those teaching methods will be useful in dealing with all students, she said.
Crucial to improving educational outcomes of students with disabilities are school leaders who share that goal, Brownell said. “We need to create supportive instructors, and school leaders are absolutely essential” in this process, she said.
In California, the commission will bring together education faculty and administrators from Loyola Marymount University, Brandman University and the California State University campuses in Fresno, San Francisco, Los Angeles and Long Beach, as well as representatives from the Los Angeles and San Francisco unified school districts and the California Department of Education. The educators will form workgroups to tackle the various issues.
The review effort aligns with the focus of the Statewide Special Education Task Force, a newly formed initiative of the State Board of Education charged with reviewing all aspects of special education services, including teacher preparation and credentialing. “We will be sharing what we have found with the task force,” said Bob Loux, a consultant with the commission who will work on the review.
Over a four-year period, the goal of the statewide team is to develop strategies to ensure that students with disabilities achieve college and career readiness, the commission said. In a statement, Mary Vixie Sandy, executive director of the California Commission on Teacher Credentialing, said, “As a statewide leadership team, we have a great group of individuals working together to ensure California continues to lead the way in this important endeavor.”

(100) Mommy, I Wish I Could Tell You What They Did To Me In School Today

(100) Mommy, I Wish I Could Tell You What They Did To Me In School Today

Sunday, March 16, 2014

Why Autism Speaks Doesn't Speak For Me

Why Autism Speaks Doesn't Speak For Me

Autism Speaks, founded in 2005 by Bob and Suzanne Wright, sometimes seems to have taken over the entire conversation about autism in this country, what with their blue puzzle pieces littered all over the landscape, coming to symbolize, wrongly, autism itself. Yet in spite of their ostensible role as a voice for autism, they’ve got a poor track record of showing respect for autistic people. One example is their intensely offensive “I am autism” video from 2009, promising a threatening, ominous autism that “ knows where you live” and “works faster than pediatric AIDS, cancer, and diabetes combined.” Oh, and guaranteeing also that autism will make your marriage fail. It doesn’t.
But that little fact and any number of others didn’t get in the way of Suzanne Wright when she settled in to pen her organization’s recent “call to action” on autism, this time switching pronouns to assert repeatedly in boldface, “ This is autism.” She claims that the country has failed autism families, “let them split up.” According to Ms. Wright, families who have autistic children are “not living.” Except that, almost in the same breath, evidently we are living
… moment-to-moment. In anticipation of the child’s next move. In despair. In fear of the future.
She compares the “3 million children” in the United States with autism–of whom one is presumably my son–to a crisis on the level of 3 million children suddenly going missing or 3 million children waking up all on the same day, gravely ill. We would, she says, call out all of the military to resolve this problem, it is so dire, so why do we not do that for autism? It’s not the first time someone has compared autism to having a child stolen from them or to a dire disease. From what I hear from people who have, in fact, actually lost a child to a disease, there is no comparison.
Autism “moms” (no dads?), she avers, live like this:
  • On bad days, they are depleted. Mentally.  Physically. And especially emotionally.
  • Maybe they have been up all night caring for their teenage child who’s having a seizure.
  • Maybe they are up yet again changing the sheets because there’s been another bed wetting accident.
  • Maybe their child has been trying to bite them or themselves.
  • Maybe they can’t afford the trip to a doctor specializing in autism.
  • Maybe there is a waiting-list for ABA, speech and OT.
  • Maybe their insurance won’t pay.
  • Maybe they don’t have the money to pay a special lawyer to fight for school services.
As a family, we have experienced almost everything on this list, some with our autistic son and some with other sons, and some with all three. Wright says, “This is autism,” but with our three children, it’s just been “parenting.”
Parenting can be tough and can leave you tired, mentally, physically, and emotionally. It’s true. But I can’t begin to say how offensive it is that someone would distort our lives with our wonderful children as not even living, as nothing but “despair” just to buy attention from people who don’t know any more about autism or autistic people beyond that blue puzzle piece. Or that this cherry-picked representation of parental hardship, with no mention of the needs of autistic children, is used to paint a sort of forthcoming reign of terror over our nation if we don’t do something about it. This kind of vilification of autism serves primarily to dehumanize autistic people and leave them as the frightening “other” of Autism Speaks’ infamous video.
Do families with autistic children need a smoother road to services and resources? Of course. Families with children with any complex condition need that, and so do autisticadults. Do we need better supports in school, better infrastructure for our children as they grow? Yes. Of course. Do we have to diminish and demean and dehumanize our children to get people to listen to us when we talk about these needs? I emphatically think not, and many autistic people and parents of autistic children agree, based on the reaction in the comments on Wright’s post [and elsewhere, including from longtime supporters].
It’s odd that Wright would argue so strongly for supports given that, according to the Autistic Self Advocacy Network [their statement on Autism Speaks is here], her own organization in 2010 devoted only 4% of its budget to “Family service” grants. And Autism Speaks’ track record on inclusion of the very people it claims to represent was limited, at best, and now has returned to nonexistent.
The organization at one point tried to make what was clearly a token effort to be inclusive of the autistic people Suzanne Wright offends in her latest disjointed salvo: They got autistic writer John Elder Robison (Look Me In The Eye) to join the organization as a member of its boards on science and treatment. He soldiered on through what he references as public relations gaffes, but even Robison–a gentle, funny, kind, and optimistic man–has had enough with this organization. He has resigned from his association with Autism Speaks because of Wright’s screed, writing in a letter to them that
Autism Speaks says it’s the advocacy group for people with autism and their families. It’s not, despite having had many chances to become that voice. Autism Speaks is the only major medical or mental health nonprofit whose legitimacy is constantly challenged by a large percentage of the people affected by the condition they target.
Robison goes on to say
Autism Speaks still has a base of support among families of young children, but it has very little support from parents of older kids, or autistic adults. And the fact is, that is the majority of the autistic population. I’ve made that point in the past; apparently to no avail. I’ve suggested things the organization could do to garner support from those groups, but those suggestions have been ignored.
In a public Facebook FB -1.61% post, he asks:
How will people with autism assume a leadership role in guiding the development of tools and therapies to help our community?
We have a number of good organizations fighting for rights, but none had anywhere close to the resources of Autism Speaks, especially in science.
One place that I find consistently good interpretation and synthesis of autism science isSFARI.org, website for the Simons Foundation Autism Research Initiative. It’s another autism organization begun by a well-heeled philanthropist with an autistic family member, but the focus of both the organization’s funding and the science communicators on the site is solidly scientific. What appears to be lacking is autistic representation and autistic voice, something Autism Speaks no longer has, either. But at least SFARI is getting it right on the science and doing it without roundly offending autistic people in the process.