1/ I'm going to talk about Individualized Education Plans (#IEP). If you have a child who may have special needs or have dealt with IEPs, this thread is for you. You are seen. This is a reality for many parents, myself included. It takes months of real hours and frustration. ๐งต๐
2/ And as a side-note, if you still use ableist language and slurs in your everyday vernacular, you might want to reconsider your values after reading this one fraction of what a person with special needs and their parents have to go through.
3/ I have just spent the past couple of months (this year) preparing for my child's upcoming IEP meeting. This exercise is a combination of detective work, assumptions, and documentation. Documentation is key. Getting needed services is often an exercise in attrition.
4/ Backing up. Where did the concept of an IEP come from in the US? I'll link the Individuals with Disabilities Act (IDEA) site if you want to go further down that rabbit hole. Basically the main goal (taken from the website) is:
sites.ed.gov/idea/about-idea/
5/ "To ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living."
6/ The phrase "free appropriate public education" is important. There is a provision in section 504 of the Rehabilitation Act of 1973 that handles enforcement to access and the rights of parents and students regarding FAPE.
7/ There is a one-pager from understood.org that I use to understand the basics. assets.ctfassets.net/p0qf7j048i0q/3SxlMzMGCZDKd7RvcGwi91/21678677a199e994f53be0cbf84ed54a/Free_and_Appropriate_Public_Education__FAPE__Understood.pdf
8/ Free means that the education and services needed for your child should be at no extra cost to families. The government pays for this.
9/ Appropriate means that if your child qualifies, they are entitled to an IEP with services to meet their unique educational needs. Appropriate is where the battles for services often play out due to multiple conflicting interests. More on that later in the thread.
10/ Public means supervised by a public school. Your child's experience may vary wildly depending on school district. I'm sure there are some that do this extremely well. The issue is that it varies from state to state and district to district.
11/ Education can include special education and related services, like speech therapy, occupational therapy, vision assessments, etc.
12/ This all sounds fairly straightforward until you actually try to go down the road of obtaining an IEP, then deciding on goals and services. In my experience that the process breaks down in a few key areas: Obtaining, Deciding on Goals / Services, and Deciding Appropriate.
13/ Unless you've been through this, my words will not likely give you a complete sense of the frustration that come along with the seemingly sisyphean task of navigating the IEP process.
14/ The first hurdle is obtaining an IEP. To do this, the school has to agree that there is an issue and start a barrage of assessments that may include, for example, psychological, occupational, speech, educational, and social assessments. This is not an exhaustive list.
15/ After the assessments, the IEP team (which includes the parents) will determine if your child qualifies for an IEP. My child has #DownSyndrome. In that case, determining the need for services was pretty straightforward as my child has a clear diagnosis.
16/ In other cases, such as undiagnosed ADHD or Dyslexia it might be more of a fight to get services. It might be more of a fight to even get the school system to start assessments. Even if you do get an assessment, they may not determine your child needs an IEP.
17/ If you still feel that your child needs an IEP, you can file a "due process" claim to get a third-party assessment. Due process is used for dispute resolution in the IEP process for a number of items.
18/ If the team has determined that your child qualifies for IEP services, then those services must be determined, including supports and goals to be worked on in the Least Restrictive Environment (LRE). LRE can vary based on your child's needs and starts with an open class.
19/ LRE means that if your child can be educated along their peers, that is where they belong. This is true even if supports are needed. In my case I wanted my child to spend some time in a special education classroom, mixing for resources like PE or ART.
20/ It is important for socialization and normalization of people with special needs to be amongst their peers and not just with others with special needs. It benefits the child with special needs and the other children who will come to see them as children like any other.
21/ Deciding on goals, services, and accommodations is another area where the IEP process can break down. The APPROPRIATE portion of FAPE is ripe for disagreement. The reason for this is that these determinations are often at odds with state-level standards testing.
22/ For example, I have determined that my high level vision for my child aligns mostly with the three areas of IDEA. Further education, independent living, and future employment, with Independent Living the funnel through which all goals flow. My child NEEDS life skills.
23/ Since this is the case, I have opted for my child to obtain an Applied Studies Diploma. In Virginia, this curriculum is mapped by a series of skills and skill levels. There is not a grade-level mapping because the individual may be at different skill levels than typical.
24/ More info on Virginia's Applied Studies Diploma can be found here: doe.virginia.gov/instruction/graduation/applied_studies/index.shtml
25/ A skill level mapping is the right approach because there is no grade-level mapping available that can account for a child with special needs and cognitive delays. It doesn't make sense to compare their progress to a grade level standard.
26/ However, there is a very disappointing process in my state that requires students on an Applied Studies Diploma track to sit for the Virginia Alternate Assessment Program (VAAP). This program is similar to the SOL in that it is a standardized test that maps to a GRADE LEVEL!
27/ As a parent of a child with special needs, this is maddening! I need my child to learn how to count mixed coins, make change, learn personal info (address, etc.), learn what to do in an emergency, count to 100, or learn her days, months, year and recall them on demand.
28/ VAAP has my child trying to find the area of a 2d geometric shape! We are at the recalling the day of the week level. This is where I feel the Individualized part of the #IEP is at odds with the standards.
29/ Since I have researched this and experienced it myself, I know that children with Down Syndrome often learn best with a multi-sensory approach. Pictures, manipulatives, and social stories go a long way towards overcoming the limited working memory in children like mine.
30/ There is simply not enough time to implement these strategies if the teacher is focused on the standards required in the VAAP. My child has often come home with cramped black and white worksheets dealing with abstract concepts that are way above her head.
31/ How do they get away with things like this? Often the education team will use the IEP to provide for things like calculators on tests. Instead of taking a unique approach tailored to my child's INDIVIDUAL needs, they teach her to punch in numbers on a calculator to pass.
32/ These shortcuts are reflected in exaggerated grades and progress reports that DO NOT match the lived experience of my child's actual progress. It is disheartening and frustrating. An IEP is very data driven, so with data like that good luck getting additional services. ๐คทโโ๏ธ
33/ This is why it is extremely important to keep good records and data. Do your own assessments of their progress at home and document it!
34/ I scan every piece of school work that is sent home for my child so I have a comparison year to year. I video her from time to time doing the exercises in the worksheets and compare the results to implementing the same lessons with manipulatives or other muli-sensory tools.
35/ I keep copious notes about everything that was said at an IEP meeting and how it may or may not align with my vision for my child. I use apps like @obsdmd and @craftdocsapp to stay organized and share my findings with the IEP team. I use @readwiseio to document research.
36/ Fighting for my child's educational rights through an #IEP is a full-time job on top of my full-time job of parenting on top of my full-time job. If you are exhausted reading this thread, imagine what it might be like to actually go through this process.
37/ The school system will try to throw multiple acronyms at parents and expect them to keep up. You have acronyms like IEP, LRE, VAAP, PWN. You have documents to keep up with that outline your rights and responsibilities with the IEP process. Long, legal documents.
38/ If you are in the midst of starting or have been dealing with the IEP process for a while, I feel for you. It's not an easy road, but with some tools and data you can do it. If you don't ask for it, it usually won't happen. Keep this in mind as you navigate through this.
39/ If you do not have a loved one dealing with an #IEP or have never dealt with it yourself, please just keep in mind that when you meet a parent of a child with special needs, that momentary interaction is an iceberg of both triumphs and frustrations. Be patient. Be kind.
40/ If you found this thread helpful, that makes me extremely happy. Please consider liking, sharing, or retweeting the first tweet in this thread. It needs to be normalized to show that people with special needs and their loved ones go through more than one might imagine.
41/ As a bonus, here is an example of how I use @craftdocsapp to map out goals for my child. Each section of the Applied Studies Diploma Skills Mapping is a Page that dives further into specific goals that map to those skills. Craft makes it easy to share this with the #IEP team.