Sunday, April 28, 2013

Filling in the gaps

I know full well that most school employees are kind-hearted and are truly in their professions to help children reach their full potential in a safe environment.  Truly.  But everything is not all hunky-dory in the world of special education, and that includes for students/families impacted by ASDs.  Though forward progress has been made, it hasn't been a smooth ride, and we aren't yet where we need to be.  Our superintendent wrote a letter to the editor (The Enterprise, 4/24/13).  In my opinion, each of the points in his letter may be accurate, but when you string them together, you hide the gaps. What's in between the points are the problems with services.  I've pasted in the original letter and filled in some of the gaps I noticed. 


The St. Mary’s County public school system recognizes that April is Autism Awareness Month. While April 2 has been designated as World Autism Awareness Day, the entire month of April is a time to focus on autism spectrum disorders. According to Autism Speaks, a worldwide organization that promotes research and awareness, autism affects 1 in 88 children and 1 in 54 boys.

St. Mary’s County public schools are fully committed to supporting students, families and staff with the goal of improving the outcomes and lives of children and young adults with autism
How do you measure that commitment?  I see that students are denied the educational label of autism (often even with a medical diagnosis in hand) and therefore are denied many of the services they need to succeed.  I see that parents may be treated with disrespect, disdain, occasionally contempt.  I see that students' IEPs are NOT automatically fully implemented as evidenced by the number of parents who have to FIGHT to make implementation happen.  I see that knowledge at the central office level cannot be counted on to make it to the teachers "in the trenches."  I see that teachers in the trenches have  needs that aren't met by central office.  I see that families are denied communication and information essential to being an equal member of their child's team.
Currently there are 160 students with a disability of autism in St. Mary’s County public schools.
Maybe 160 is the number of students with the educational label of autism.  But I hear parent after parent tell me that their child was denied the educational label, often the IEP itself, in favor of a handful of accommodations in a 504 Plan (which does NOT fall under the Department of Special Education).  Additionally, how many other SMCPS students have autism but fall under another educational label and thus aren't included in the category?  I can think of several such children in my circle of friends.
The St. Mary’s County Public Schools Department of Special Education has established and expanded a comprehensive framework of supports within the public schools. The autism support team consists of a supervisor of special education, an instructional resource teacher for autism spectrum disorders, and two full-time, board-certified behavior analysts.  All members of the team hold advanced, post-graduate certifications in the areas of autism and behavior.
But we lost an Autism IRT.  And the supervisor spends a lot of time telling us our children don't need x, y, or z.
This team is responsible for establishing and implementing programs within the framework of support. 
In my experience, this team is responsible for saying, "We don't do it that way." or "We can't afford it." or "S/he can have it if it's already AVAILABLE." or "There isn't time in the day to address x need."
All supports use evidence-based practices and applied behavior analysis.
No, no they don't.  It feels like supports use evidence-based practices and applied behavior analysis when it's convenient.
In addition to the autism support team, students and families are supported each and every day by teachers, therapists, psychologists, administrators, instructional assistants and other instructional support staff within the schools.
OK, I can agree with the statement, mostly, for students.  I just can't say the same for families.
Under the supervision and support of the autism support team, a cadre of trained applied behavior analysis providers, works daily with students in school and home settings to further implement applied behavior analysis strategies. 
This is the second time I've heard that SMCPS has a plethora of ABA techs (the other time in the 4/10/13 article in the Enterprise).  That's really good to know because so very many of the parents I know are not told about ABA.  Some parents are told that ALL team members are trained in ABA and therefore ABA techs are not needed, yet proven successful ABA techniques are NOT being used by "ABA-trained" team members.  And then there's the "in home settings" piece:  Really?????  I've heard that students are owed hours of in-home ABA services.
Specialized classes have been established for students at the elementary, middle and high school levels to meet complex student needs.
Yes.  Some complex student needs are met this way.  Others aren't, nor are they met any other way.  (Twice exceptional students make up one such group.)
According to the Behavior Analyst Certification Board, applied behavior analysis is an applied science in which professionals in applied behavior analysis engage in the specific and comprehensive use of principles of learning, in order to address behavioral needs of widely varying individuals in diverse settings. These principles are applied in school and home settings to teach new skills, to improve social interactions and to help children become independent and successful.
I've heard that some students have ABA services in the home.  Some.  Not all who need.  Just some.  And some of the time.
Families have available to them a comprehensive system of assessment and evaluation by a highly qualified team of experts within SMCPS. Children are assessed with the most up-to-date procedures and tools and within multiple settings. This critical information is shared with families as part of the special education process.
If a parent knows what tests to ask for, because not all relevant tests will be administered automatically.  And it takes FOREVER.  Yes, there are legal time   constraints, but how many of us have had the process d-r-a-w  o-u-t until most of the year is gone?  And recently, parts of assessments have stopped showing up in reports.
Parent and staff training are critical to the success of all students. 
Duh.  Much is touted; it's not enough.
The Department of Special Education maintains a list of resources and interactive tools through the Department of Special Education webpage. 
Sounds great, but I've never heard them referenced from staff, and a link on the SMCPS webpage > Our Offices > Division of Instruction > Department of Special Education > [sidebar link] Autism School and Community Tool Kit is not useful if not used.  The actual website reached is Autism Speaks School Community Toolkit, which embeds more links and downloads and which clearly states, "This tool kit is not intended to be a curriculum for special education for students on the autism spectrum, but rather a support for the general education and administrative school staff who interact with students with autism in various capacities."   So it's not intended for parents except for them to fill in the 1-page "About Me" form and then figure out how to get the school to use the resource because I have NEVER once heard a parent say that school is using it for their child.  Never.
Professional development is ongoing in our schools. Staff meets with specialists to plan for instruction, to train in specific skills, to raise awareness, to assist with behavior and to model teaching techniques. 
Yet how many staff members are still clamoring for training, training, training?  I hear them.
Autism support team members meet with families to help them carry over the success in school and to help their children with independence and challenges in the home and community.
Rarely.  Rarely.  Rarely.
Teachers, parents, and community members can create an account through the AIM site and complete research-based  modules that cover all areas of instruction and support related to autism.
Never heard of it.  Don't know what it is.  Can't comment.
Families can learn about community supports such as the Maryland Autism Waiver and the DoD Tricare Support model. 
From whom?  Where?  Not searchable on
There is a school and community toolkit that can be accessed through the Autism Speaks site.
That's the same one discussed above, nothing new.
Most recently, the Department of Special Education has made available to staff and families the tools in Autism Pro, a web-based program 
A colossally expensive and useless program that is NOT utilized.
and partners with the Partners for Success and the Citizen’s Advisory Committee for Special Education to provide informational workshops in the evenings.
For "partners," read, "obstructs" and "uses them to show that they have such entities but doesn't use them for their full purposes or says that they have but haven't."
St. Mary’s County public schools want the community to know that a child who may have an autism spectrum disorder is first and foremost an individual and unique child. Our staff works each and every day to nurture the individual child and to help their families and schools do the same.

Michael J. Martirano, Leonardtown 
Sounds sweet, but I'll say again that there is no area of my child's life left unaffected by autism -- that's why it's called pervasive.  To think of him without autism is to lose that which makes him unique.

I wrote the above, even posted it as a comment to the link on Facebook, and I went to bed.  When I woke up, I felt the need to clarify: 

I want to be clear that I'm not trying to paint the school system as evil or the existing interventions as across-the-board ineffective. I think that there are good people trying very hard to help our children reach their potential.  Sometimes that's all it takes. Other times, more is necessary.  

This is particularly true of TRAINING. Our children have to be understood as people with autism. How can you teach them if you can't reach them?

It's also true for "available" TOOLS/PROGRAMS. I have a treadmill, but it doesn't help me get in shape if I don't use it. Saying that we have Autism Pro is just words until the tool is used. Slapping a link on the DSE's page is useless if word isn't spread or if the linked site isn't appropriate/isn't used.

Additionally, PATHWAYS must be cleared and obstacles removed. Parents must be valued, not poo-pooed. Educators who have innovative ideas must be encouraged, not shut down. Statements of problems must be addressed, not white-washed or interpreted as personal/professional attacks and treated unprofessionally.

I've said before that I've seen forward progress in the 12 years we've been "in the system." I'm grateful to all the educators who are making a difference. However, we have not reached the point or place that we can say that SMCPS systemically addresses the needs of students and families impacted by autism. I don't think we can say that until it stops being a fight to get our children the services they need.

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