The COVID 19 Pandemic has wreaked so much havoc in just a few months and the world as we know it has completely changed. Many of us are sheltering indoors in fear, we are secluding ourselves and our loved ones for our health and safety, no more travel to Disney or Universal or Six Flags or any other theme park, our bedrooms have become our workspaces and living rooms have become classrooms with everything we know and everyone we know inside a box that we connect to via a computer and an internet connection- What a change for our neurodiverse children to understand and adjust to this new, changed world and way of life!
The comfort zone (home) where they can rock, stim, make loud noises, stare away into space, do what they want and be themselves is NOW all of a sudden a "Classroom" where they are expected to sit up for hours on end, listen to a person from a box within another Bigger Box (the Computer Screen), and follow along to keep up their academic progress AND All this without the support of their "Aides" (behavioral or educational) because now "Mom" or "Dad" is the aide/teacher/therapist all in one.
Imagine the stress on the parents, which our children are picking up every moment, the stress on the child compounded by their inability to express how overwhelming all of this is for them. It is little wonder that so many of our SpEd families are seeing Anxiety, Social Isolation, Behavioral Escalations and Oppositional Defiance in their children. Most parents have followed along with what the #SchoolDistricts are telling them, without questioning if this "Distance Learning" model is working for their child and some of the more vocal parents who voice their "concerns" about their child not learning are being "silenced" by the use of one term - "Unprecedented" and the fact that the school district cannot do much to support Special Ed students in this setting. Aides cannot come home, teachers won't return to school, therapists can only work through a "Computer screen" or the phone and due to the "unprecedented nature of this situation" the school districts are doing the best they can. Well, even you would stay quiet, wouldn't you ? But the question is, are they really doing the best they can? After all, your child has an Individualized Education Plan with services and supports in place to further their "learning" and the IDEA protects their right to FAPE (free and appropriate public education). So, what are our options? What can be done ? How do we ensure that our neurodiverse child in special education is receiving their "educational benefit" and progressing along their educational journey ? To answer some of these questions and gain some perspective on this matter, PRAGNYA organized a "Tete-a-tete" with Attorney Adam Wasserman of the Education Justice Law group and Special Education Advocate, Mary Peitso for the families of neurodiverse students in Sp Ed on August 23, 2020.
HERE ARE SOME KEY TAKE AWAYS...
There have been no waivers or amendments to the provisions protected by the IDEA which essentially translates to the fact, that
"Our children are mandated to receive whatever they are supposed to receive as outlined in their IEP". There is no need for modifications to their IEP as such.
Never waive your Right to an IEP
Although, since the California Dept. of Education in its SpEd guidance states that the IEP remains in effect with all services that need to be provided to the greatest extent possible or "alternative means", the law is loose on methodology. "NEVER WAIVE YOUR RIGHT TO AN IEP"
The most dangerous "R" word to look out for is "Regression". We do not want this for our children. While this may be the biggest concern, Atty. Wasserman reiterated that our posture has always got to be strengthened by the expectation of "ALWAYS PROGRESS" with regard to the student's educational goals.
If in the unfortunate circumstance, the student does not reach their goals as agreed upon in their IEP (Individualized Education Plan) or regresses, or the school district fails to provide the service to your student, regardless of the pandemic, your remedies are "NOT DIMINISHED". You do have a right to ask for "Compensatory Education".
"Communicate and Collaborate with your IEP Team
Communicate and Collaborate with your IEP team, fellow parent advocates, and most importantly with your school district administrators. Everyone wants to see the student succeed and sometimes, it is just a matter of being the voice for the students who are unable to speak for themselves and raising concern regarding their progress. Specifically identify areas of concern and try to find "solutions" to address the student's need, first. Then, to the best extent possible collaborate with the IEP team to advocate for the supports and services and put all your requests in "writing".
Document, Document, Document...
Maintain a written log of all requests, concerns, IEP-related emails with the student's case manager. Follow up on your emails with updates on your student's learning process or for updates on what measure are being put into place to enable your student's progress.
Health and Safety of the student
If the "Health and Safety" of the student is threatened due to any circumstance, you can ask for a "1:1 AIDE" or "1:1 Teaching" at home. The guidance from the California Department of Education provides for this to be made available to families in these circumstances. Some instances where you can request for this :
The student is engaging in maladaptive behavior of self injury or aggression due to being forced to be confined to computer based learning which may not be effective for them
The student cannot function without structure during the school day due to the lack of qualified staff to support the student during this time behaviorally, and also in other areas of support
The student is completely "disengaged" and has gone into "shutdown" or "act out" mode with an eruption of "stimming behaviors" "elopement" "escape" "aggression" "avoidance" "oppositional" "anxiety" or "acute perseveration" behaviors, and are not participating in online learning, endangering their mental health and wellbeing
You would need to speak to the student's medical support team to obtain documentation with regard to this and provide your request in writing to your school district. Call an IEP meeting to discuss the issues with regard to the impact of this form of learning for your child.
Prior Written Notice (PWN)
A PWN is provided for each individual student by the District regarding provision or availability or the lack thereof of services that are meant to be provided to the student. It cannot be a "blanket" PWN and nothing in the IDEA, even during the pandemic allows for School Districts to engage in the "Ipse Dixit" - assertion without proof; or a dogmatic expression of opinion to deny or modify services even during this pandemic. There have to be specific reasons provided "in writing" specific to your student and NOT a blanket statement from your district generated in a form letter format.
A key element of the IDEA, "Child Find" is a legal requirement of schools to identify all students who may have disabilities and who may be entitled to Special Education services. It is the prerogative of the school to assess a child in every area of their disability and provide them supports and services to aid them in their learning journey. So, if you suspect your student needs more support in speech or behavior management or has sensory needs that are not addressed in his occupational therapy or in their learning process, it is recommended that you have your child completely assessed for all areas of disability as part of their evaluation by the district and have supports in place for the same, no matter whether or not these services were provided or not provided previously. The "Statute of Limitations" to file a complaint if you believe that your child was not assessed or provided support in a said area of "disability" is two years.
Use SMART Goals
As part of an IEP team it is exceptionally important to establish "Specific, Measurable, Achievable, Realistic, Timely" goals for your student. Make the goals as granular as possible. Break it down to the minute details, for example :
Generic : "The student will remain engaged 70% of the time during class" can be rewritten as
SMART and Compound: "The student will answer on point questions 3 out of 4 times" or "The student will not have their head down on the table except during allotted break times" or other specific actions that are compounded into the goal that can be measured and reported on accurately.
During the Pandemic, "you" the caregiver become the "data collector" - collect data on how many times your child was on task, off task, how often they needed to be redirected and more and draw your goals and reconvene your IEP team to work on those areas of need that may have emerged during this time.
Use of NPAs (Non Public Agencies)
During the time of the pandemic, and also outside of it, many a times, school districts may not have the "buy in" of all the supports and service providers to best support your student. They may be bound by teachers union mandates, availability or the lack thereof of DIS (Direct Intervention Service) providers such as Speech therapists, Occupational Therapists, Behavior techs etc., in which case the student is left without the "much needed support" to progress along their educational journey.
In such cases, the District can be asked to bring in NPAs, private agencies to provide these supports and services. This is a written request that you would need to make or if you are able to find such NPAs yourself, you can make a written request to have the district fulfill the services due to your child by engaging these NPAs.
The important thing to remember is that it is the quality of life and progress of an individual, your student, that matters during this time. "Unprecedented" as it may be, this term will "no longer" suffice as an excuse to shirk from providing the supports and services due to the already vulnerable and disadvantaged students in Special Education.
"Communicate, Collaborate and Advocate"