It took three years but I finally got them their diagnosis and now I don’t know what to do next. Their school always gave us issues when we held them to the expectation that my kids would get the help they needed from their school. They refused to let my youngest stay a full day last year for his first year of school, and now CMH (community mental health of Northern michigan) is trying to say he no longer needs their services and should stay in his normal classroom, like they’re trying to get rid of him. And with my daughter, they refused to get her onto an IEP before we forced them to. Now that I have the diagnosis, what are my options to ensure my children get the help they need?
Unfortunately it is greatly dependent on your local situation. I could give you some excellent advice for my home town, some passable advice for the small Northern European country I live in. Nothing at all outside of it.
Are there any local advocacy groups you can get in touch with?
(I’m the spouse of a special ed teacher, but not in Michigan. I’ve just been around this stuff for over a decade hearing it from the grad student/teacher side)
Getting a diagnosis should make it much easier for you to get appropriate IEPs, 504 plans, and services. I’m surprised they got IEPs without a diagnosis, since there are legal thresholds for a school/states to get federal funding related to IDEA (more on that later)
It sounds like your local schools and community services are a mixed bag of how well they provide special education services. The positive things to notice are that they have
- found a way to get IEPs for your kids even without a diagnosis
- seem to be concerned with making sure they are providing education in the least restrictive environment
The extremely worrying thing is that they refused to let your youngest stay a full day last year for his first year of school. If this was because it was a kindergarten/pre-school year and the normal school day is a half day I would be less concerned about getting services in the future.
Federal laws
There’s two main federal laws that guarantee your kids get an education:
- Section 504 of the Rehabilitation Act of 1973
- The Individuals with Disabilities Education Act (IDEA)
Section 504 of the Rehabilitation Act addresses providing accommodations to students with disabilities, and guarantees they get a free and appropriate public education, and prohibits discrimination based on disabilities.
IDEA is 3-pronged. It restates a requirement for a free and appropriate public education, requires individualized special education and services for certain disabilities (IEPs), and requires that students receiving special education services do so in the least restrictive environment.
Your locale seems to be addressing some of these, but not others.
For a student to be eligible for special education under IDEA they have to qualify under one of 13 categories, one of which is autism spectrum disorder. To qualify under autism spectrum disorder requires a diagnosis, usually an outside medical diagnosis, but occasionally, if a school really cares and tries they can provide (at least here) a school-specific diagnosis based on how it is affecting education. Eligibility for special education is required for an IEP. Since your kids have IEPs the school presumably somehow found a way to qualify them even without a diagnosis. Eligibility for special education has to be reviewed once every 3 years. IEPs have to be updated annually, and they require parental participation, and parental assent (at least initially, they may not for renewals, I’m not sure).
Special education services and education for students under IDEA have to be provided in the “least restrictive environment”. This means that a student receiving special education must be getting education along with their peers as much as possible. This is supposed to provide a number of benefits like socialization with peers, exposure to grade-level curriculum, and preventing schools from sending all the students to a special ed room and ignoring them all, which is historically how many students with disabilities were treated even after many updates to IDEA. The positive interpretation of CMH saying your youngest son no longer needs their services and should stay in his normal classroom is that they are trying to make sure he gets services in the least restrictive environment.
If your school is not letting your youngest son stay for a full day they are not providing a free and appropriate education and are discriminating on the basis of disability. You are going to need to advocate for him or dispute with the school district, and are probably going to need help from an advocacy group, mediation, or lawyer. In some states the state will provide a mediator to make sure school districts comply with the special education rules, but that does not seem to be the case for Michigan.
504 plans
Section 504 is the easier of the two for a school to use to provide accommodations. For a 504 plan they only need to document two things:
- That the student has a disability that limits a major life activity
- That it is interfering with their education
(the second of those might not even be required)
There are many accommodations that a school can provide for autism besides individualized education, and these can be called out in a 504 plan instead of an IEP if for some reason you can’t get an IEP modified in a timely manner. Example accommodations include:
- Speech and language services
- occupational/sensory therapy
- social/time management/educational skill services (though these are more often part of an IEP)
- behavioral intervention
- Extra time on tests/homework
- Break times to unwind from sensory overload
- Noise cancelling headphones
- stress relief/fidget/sensory toys
- Quiet areas
- Anything else that would help your child that isn’t getting individualized instruction
IEPs
Individualized education plans require eligibility under one of 13 disability categories. This requires 3 things:
- An identified disability (this can be identified as part of the eligibility process)
- The disability must have an adverse effect on their education
- The student must show a need for specially designed instruction
The major difference between a 504 plan and an IEP is specially designed instruction. If the student’s getting specially designed instruction, it needs to be an IEP (from the school’s point of view). This means school districts might only provide speech and language services/sensory therapy/social skills/study skills/etc. under an IEP and not under a 504 plan. An IEP can include any of the services that could also be provided under a 504 plan.
An IEP is where you are going to get help with any academic area your kid is struggling with due to a disability. For autism spectrum disorder this varies greatly between students, but that’s the point of an IEP, that it be individually designed for the student.
IEPs require an annual review and parents are entitled to participate in that process. The annual review involves updating goals and progress and what services are appropriate/need to be provided and in general modifying the plan. This means you should get to participate in what services your kids are getting in no more than a year, but there should be nothing that prevents a school from updating these at some other time if it’s appropriate and they include you/their IEP team (see the parts of the pages I linked below about “Prior Written Notice”) and learn who should be on your student’s IEP team)
Eligibility for an IEP must be re-evaluated once every 3 years. With a diagnosis for autism your kids will only need to show an adverse effect on their education and a need for specially designed instruction to remain eligible.
Michigan
I’d check out Michigan Alliance for Families for information that’s more specific to Michigan. In particular their pages on Parental Advocacy and Dispute Resolution
Other options
If your school district simply won’t provide appropriate special education services, many parents will seek out a different source of education than the school district. This can be a local charter school, an online charter school, or some other school of choice system. Beware that not every charter/school of choice system is required to provide special education services at all. Online charter schools with good special education programs get a lot of students enrolling in the school, getting evaluation, eligibility, and IEP plans, and 504 plans, and then transferring back to a brick and mortar school with documents in hand. A 504 plan from an online school will not address many in-classroom accommodations because there isn’t a physical classroom, but might still include accommodations that can be adapted to a physical classroom like being allowed to use stress relief toys during class.