IEP Parental Rights

Recently I was asked by another mom what she is allowed to ask for  and what her son is allowed to get. As a mom with a child on the spectrum, Killian has an Individualized Education Plan, otherwise known as an IEP. This is extremely important because Killian works differently than a neurotypical child and needs special breaks and assistance maintaining his focus and behavior.

First, I want to state that the legal aspects may change by state (and obviously country) so make sure you look into the benefits of your area. I am in Oregon, USA so I will be referencing what is accurate for our circumstance.

Before every IEP meeting, you will be offered a thick packet that includes procedural safeguards and parental rights. If you are not offered this, then this is your first red flag warning that the school is not following their legal responsibility and may try to get away with not abiding by the IEP.

Another helpful thing that I highly recommend if you are new to the process is to bring an experienced friend, colleague, or relative to help you with your meetings. You are advocating for your child. They are advocating for you. You are always legally allowed to have a parent advocate who can help you stand your ground if the staff tries to bulldoze you. They can also help you remember things that you may have forgotten about or not even thought about asking for.

Every parent has the right to participate in all decision-making meetings held in order to create an IEP for their child. These meetings are backed by  FAPE (Free Appropriate Public Education) and include the child’s eligibility, evaluation, educational placement, and anything else pertaining to their education. In the case there isn’t a parent available for these meetings, a surrogate parent should be appointed by the district to help represent the child adequately. It is very important that you or the child’s other parent be at every meeting but we understand that life can get in the way. In the case of needing to find a parent replacement, you need to let the IEP staff know at least 24 hours prior to the meeting. There is a sign-in sheet that everyone needs to sign prior to the meeting’s start.

In the case of any changes in identification, evaluation, and educational placement initiated by the school district, the parent has the right to receive prior written notice. You should also receive a written notice of the date, time, and location of the meeting either in the mail or sent home in your child’s backpack.

Parents also have the right to provide an informed, written consent for the special education IEP before the assessment process or the provision of special education and related services. This consent is also necessary before any changes are done to the program already in place. Parents should only supply their consent once they have a clear understanding of the IEP team proceedings. NEVER SIGN BEFORE READING AND UNDERSTANDING EVERYTHING FULLY! Also, parents should be provided with an interpreter if their native language is different from English or in case they are deaf. Keep in mind; parents also reserve the right to refuse the evaluation or educational placement of their child. Parents have the right to disagree with any proposals presented to change their child’s placement. When a disagreement surfaces, the child should remain in their current program until resolved. If a disagreement arises, parents are free to seek voluntary and impartial mediation to help find a mutually agreed-upon solution regarding the child’s special education IEP.

Every parent reserves the right to audit the school’s educational records regarding their child’s IEP records. If at any time you need or would like another copy, they must provide every paper in the IEP file. In the case of any complaints concerning the provision of FAPE, to the child, parents have the right to a hearing. During the hearing, the parent can request that an advocate, attorney, or if appropriate, their child be present. Furthermore, parents have the choice to make the hearing public. Making the hearing public could aide in your case by drawing the attention of the media and fellow parents to push back at the school and fight for your legal rights, holding the district and officials accountable. It would also let other IEP parents know that something may be up and should look into their child’s plan to make sure everything is being honored.

Children enrolled in special education have specific rules regarding their suspension or expulsion. If these instances extend for more than ten days, an IEP meeting should be called to assess how their disability could be contributing to the child’s misconduct. Additionally, the participants should discuss the potential for an alternative placement as an alternative. The parent is an essential member of the IEP team and therefore, should actively participate in the progress of their child’s education and performance. IDEA guarantees the rights of parents formulating the necessary educational programs and decisions that will benefit their child. It is, therefore, important for parents to exercise their rights responsibly to guarantee the success of their child. The world of special education is a big one. This means there’s a lot of information parents should be aware of describing the intricacies of service, schools, behaviors, and tips and tricks to gaining proper opportunity. The more information you have, the better equipped you will be to make future decisions for your child with special needs to ensure their success. Special Education Resource was explicitly created to help parents of children with special needs find the information and assistance necessary to help their child reach their excellence.

IEP COMPLIANT OPTIONS FOR PARENTS

  1. School District Complaints: Search your district’s website and look for whatever formal grievance procedure they have, and file one. Ask to present it at the next school board meeting if you are comfortable public speaking. Take some folks with you for moral support. Again, having a parent advocate is super important.
  2. If you live in an area where the county oversees education, I would look and see if there is a county-level complaint above the school district level complaint.
  3. State Compliance Complaints: Each state should have a State Department of Education website where this information will be available. However, a compliance complaint is just that–about compliance. Most often it means that you did not receive the IEP Meeting Invitation 10 days before the meeting. Or that they did not complete the evaluations within the mandated 60 days. If you have great data and documentation that the team is not following the IEP as written, you can try filing a compliance complaint. But do not be surprised if they bump you back to using your Procedural Safeguards.
  4. State Complaints-Professional Boards: Again, this will vary from state to state. But there are state licensing boards for nurses, OTs, PTs and certifications for teachers. You should know that if you file a complaint against a professional and that person belongs to a union, that union will defend them. That is why people pay union dues. Again, just letting you know what you are up against. You also will have to demonstrate that the offender actually violated state laws regarding their profession, their state’s practice act, or similar.
  5. FERPA complaints– A friendly reminder that educational records are governed by FERPA, not HIPAA. And of course, you’re going to have to read through FERPA and discern which portions were violated. According to the USDOE website: A parent of a student under the age of 18 at an elementary or secondary school or a student who is at least 18 years of age or attending a postsecondary institution at any age (“eligible student”) may file a written complaint with the Family Policy Compliance Office (FPCO) regarding an alleged violation of a school’s failure to comply with his or her rights under FERPA.  A parent of an eligible student generally may not file a complaint under FERPA, as the rights afforded to parents are transferred to the student when he or she becomes an eligible student. Here is FERPA information for Parents, and FERPA information for Students. How to file a complaint is linked at the beginning of this bullet point.
  6. Office of Civil Rights Complaint– OCR is a federal office, therefore federal laws apply. That link will explain how to file a complaint. OCR complaints must be completed within 180 days of the last event.

One large incentive for schools to follow through with IEP procedures and guidelines and well as proving the services that were agreed upon in the meeting is to keep their funding. Schools are given grants and support through educational foundations and government means. If they are found guilty of not following these rules then their grants and funding gets pulled.

At any time during the school year, you may request an additional IEP meeting to follow up on your child’s progress or make changes to the plan. If revisions are made, then they have 60 days to implement those changes (30 days for preschools) and 30 days to respond to your revision requests.

You are your child’s biggest tool in their tool belt.  You are going to be the one who makes the biggest impact in their life. Never stop fighting for them and for yourself. And most importantly, never be afraid to ask for help.

-The Lazy Mama

Is It Ego Or Ignorance?

Something I have noticed when speaking with some other parents is that it seems lately doctors are refusing to send out necessary referrals to specialty doctors. Wether out of fear of bruising their ego or ignorance regarding what that specialty entails, I have no clue. But unfortunately, it is happening at the risk and cost of their patience well-being.

Now, this doesn’t go for ALL doctors. But there are definitely those out there that seem to do everything in their power NOT to send out referrals. I just have to say this one thing. It is OK to send referrals or ask another colleague for help. It by no means makes you an incompetent doctor. General practitioners and pediatricians are amazing at overall health and care. But when it comes to something outside of the basic common cold or normal every day problems, that is when a doctor who has done the extra schooling and training to study one specific area is needed.

This whole post stems from “Dr. D-Bag” who time and time again refused to send in the referrals that I had been pushing for and because of that my son, and myself, suffered. Having now been able to have a few appointments with the Developmental Pediatrician and seeing all the help and diagnostic tools that we could have had available to us at the most needed times in his life is extremely aggravating. The mama bear in me wants to go nut-punch the doctor and yell at him about how wrong he was, but the Christian in me tells me to turn the other cheek and just, as my girl Elsa would say, “Let it go.”

Here is the part about where I talk about advocacy and why it is SO crucial to those of us with special needs kids, well any kid really.

If you feel strongly that you need to see a specialist and get a second opinion, but your primary care physician won’t give you a referral, no matter how many times you ask, it might be time to switch doctors. Your primary care physician should be your partner in maintaining your child’s health and if he/she isn’t responsive to your and/or their needs, it could be time to find another doctor.

Most times, kids are unable to speak for themselves when it comes to their body and emotions. They rely on us, as their parents, to do it for them until they can figure out how to do it on their own. We need to fight tooth and nail sometimes to be heard and let’s be honest, its exhausting and it sucks. Sometimes the best way to be heard is to find a care team who will listen. I was afraid of leaving and finding a new doctor for my son until I had a reality check from a speech specialist who was doing a special education evaluation for him and she said mom-to-mom that I needed to find a new doctor who would listen and not ignore the facts that were right in front of him. And obviously I am so glad that I listened to her.

A few months ago I was able to be that same voice of reason to another mom who was struggling with the exact same issue and was afraid to rock the boat when really her life was a freaking hurricane and the doctor didn’t want to ride it.

I saw this posted on Facebook the other day and it really resonated with me.

48407706_1952066391755828_2694389433259524096_n.png

I am thankful for the mom-to-mom support I have received but I really wish that the medical support would have come along sooner.

I have learned, through having the proper support system now, that even I need an advocate for myself while I am advocating for my child. Sometimes that has come in the form of a friend who has walked this same path, sometimes it has come in the form of a teacher or therapist who has gone above and beyond in making sure that myself and my child are getting the care needed to make life more manageable.

Sometimes when we are so busy standing up for our kids, we forget that we also need to stand up for ourselves. It can be very overwhelming at times which is why having your team of doctors, teachers, therapists, and friends that you can count on to have your back and help you fight for your child instead of prevent you, is crucial. They need to jump on the boat, paddle out into the hurricane, and help you create a rescue plan. Doctors need to be the ones to help you make it safely back to land in one piece, both mentally and physically. And sadly, there are those physicians who would rather shout to you that you will be fine and shut their blinds.

If your doctor is not braving the storm and paddling out to see with you, then you need a new doctor. You deserve to get the required help to live a manageable life. Your child deserves to get the proper access to care in order to learn the necessary life skills to be as happy and as comfortable in their own skin as possible.

-The Lazy Mama

Where do I even begin???

Well, here is a bit of my backstory.

I worked in several schools as an after-school teacher for 2 years, was a respite care provider for kids with special needs (primarily Autism) for 3+ years, was a substitute special education teaching assistant for 2+ years, an in-home teaching assistant for a special needs student for 1 year, a pediatric occupational assistant for 1 year, and am after-school coordinator for 1 year. There were some other school related jobs in there but you get the gist. I basically live and breathe kids. I have a soft spot for working with kids with special needs and being able to support their parents.

Since my 4.5 year old son was 2 I have been saying that I thought he was somewhere on the Autism spectrum. Everyone kinda laughed and told me, “No he’s not. Don’t say that.” But there were always just little things he would do that had my brain going, “Ya, I don’t know about that…that isn’t quite right.” Little things like not being able to stand doors being open. If a door was open he would have to close it at age 2. Ok, no biggy. But then adding in the fixation on super random things, the repetitive behaviors, the constant spinning, and other things that honestly my exhausted, pre-Alzheimer’s brain just can’t recall at the moment.

Anywho, fast forward to Killian becoming a big brother a little bit before his 3rd birthday. He LOVED “his baby” and wanted to hold him the second he woke up in the morning. We of course had the typical issues that all first-time siblings have with being a little bit too rough and not understanding that you can’t go all WWF throwdown on the baby. Imagine that, right?! I mean, what a HUGE surprise! You can’t Hulk Hogan body slam the newborn human larva!!

Well, as the months went on Killian’s behavior REALLY started becoming bad. I mean, to the point that I was crying almost nightly because I did not understand why I was failing as a parent. He was SO aggressive to not only Baby Oliver (pretty sure Oliver’s name has officially been changed to Baby Oliver even still) but to everyone. His little friends at church were becoming scared of him and not wanting to play with him. He would go from 0-60 in less than half-a-second. Punching, kicking, screaming, throwing anything within reach, and OMG the arguing!! *Insert frustrated growl*

One of the most defeating things as a parent is exhausting EVERYTHING you know how to do and still things are getting worse.

Now onto the medical side of things.

I went to his OLD pediatrician, Dr. D-Bag. But no, seriously. Dr. B was nice and friendly but every time I went in with my concerns and professional knowledge from working with kids on the spectrum for so many years and he was always super dismissive. “No. *laughs* Your son does NOT have Autism. He just laughed. He looked at my face. He is just a really active boy who is reacting to having a brother.” I went in multiple times, sent many emails, and made lots of phone calls. Every time I was told basically the same thing. I’m crazy, I don’t know what I’m talking about, and I’m overreacting.

I began spending a lot of time talking with my new Bad Mom friend (yes I am in a local FB group called Bad Moms because I’m awesome) whose name is Emily, AKA “My Yoda.” Her son is currently in 6th grade and is ADHD and has high functioning Autism. She has been a MASSIVE support for me in guiding me through this life from the parent side. She told me what type of doctors he needed and that’s when I learned about Developmental Pediatricians.

I requested a referral to a Developmental Pediatrician knowing that there is a 9+ month waitlist just to be seen for an initial appointment to establish care. I told Dr. B that I did not care about the waitlist. Either he needs it and great, we are already on the list, OR he doesn’t end up needing it so we take him off the list. He agreed but STILL DENIED putting in the referral!!!!

At this point he is 4 years old, did his first 3 VBS classes with different churches throughout the summer before starting preschool. Each VBS he attended he was given a one-on-one aide because of his behavior and aggressive tendencies. Multiple parents who had lots of time to interact with him agreed with me that he is somewhere on the spectrum and has ADHD. These parents are moms who have kids who are on the spectrum and have ADHD. They know what they are saying because they are LIVING it!!! They SAW in Killian what they went through with their kids at his age!!

Again, I went back to Dr. B and told him all of this and he told me no.

He did however indulge me by sending out a referral for behavioral therapy and occupational therapy which was the ONLY good thing that came from him.

I emailed his soon-to-be preschool teacher, Errin, a couple months before the start of school in mid September. She pointed me in the direction of NWRESD who deals with the educational side of things here in Oregon for kids with delays. And thank God she did! I immediately call them and play phone tag for a few weeks and then fill out the ASQ and ASQ:SE forms online. I have a 2 hour phone call with one of the lead ladies and answer question after question about everything Killian. We get an evaluation scheduled for 2 day before he starts school. She tells me that it is a 3 hour time block but they generally only last 1-1.5 hours. HOWEVER, after the talk we had she warns me that they will most definitely take the full 3 hours.

Day of evaluation we drive 45 minutes out to the headquarters and thankfully my dad had the day off and came with me so that once the eval starts he can take Oliver on a “Papa Date” while I stay with Killian and the 2 evaluators. WE WERE THERE FOR 3 AND A HALF HOURS!!!!! He had a really hard time staying on task, threw things, slithered on the floor, hid under chairs, and all sorts of undesirable behaviors. At the end of it all it came back that he had delays in EVERYTHING the tested him for!!! Receptive language, expressive language, cognitive, social, adaptive, fine motor, gross motor, and perceptual motor.

I IMMEDIATELY ask my dad to drive so that I can call Dr. B and tell him that I was right and that my son NEEDS help!! Can you guess what happened?? *Snarky look*

He told the nurse to tell me to stop calling because he already told me no.

One of the evaluators straight up told me, mom-to-mom, that she would switch providers. So guess what I did. I SWITCHED PROVIDERS!!! Something that I had been thinking about doing for a long time but was to afraid to do because I didn’t want to step on anyone’s toes or offend anyone. I am still learning to be more assertive.

I drove over to his office and requested the release of information paperwork so that I could get the process started faster and gave them the paperwork from his NEW provider the very next day. I had already gotten him established with a new pediatrician before we even got home from the headquarters after his evaluation after talking to his nurse.

My favorite receptionist was there and she was so sad to see me leave but when I told her why she gave me a knowing look and told me that she totally understood and was proud of me for being a “mama bear” and standing up for my boy. We exchanged numbers and I texted her the results and Bell Curve from his eval and she was so mad FOR me that Dr. B was so dismissive.

I was still fuming when I got home and emailed him the copies of the results and told him that we were leaving his practice. My receptionist friend told me that I needed to call and speak to the office manager and tell them everything that I had gone through and that I was now having to leave to a new doctor to get the help that my child needed. I am a very passive person. I don’t like to cause trouble or hurt people. I am an empath and it scares me to make people mad. But with everything that had gone on and siphoning the inner bitch from several of my friends, I made that call. I knew that even if one other parent was struggling with this same problem and I could bring it to light to help them, then I needed to speak up!! I spoke on the phone with the lead office manager for 30 minutes and she profusely apologized for what I had been through. She assured me that she was going to take this matter to her superiors immediately and made it sound like this wasn’t the first complaint regarding this.

Fast forward to Dr. T, the new pediatrician. I LOVE HER!!!!! As soon as we walked in she asked me question after question about Killian, typed like a maniac the entire time, and without second thought IMMEDIATELY sent in the referral for the Developmental Pediatrician, continued OT and BT (occupational therapy and behavioral therapy), and made copies of his evaluation report from NWRESD which is 20 pages long AND READ IT!! I asked her if I could give her a hug and i cried in her arms telling her how thankful I am for her. She was so confused and said all she did was send in a simple referral. I explained the struggle I had had with Dr. B and she was so heartbroken and angry about the lack of proper care we had received.

Killian started preschool and got an IFSP (individualized family services plan) which is kind of like an IEP (individualized educational plan) but for littles through NWRESD. He continued with OT weekly and BT every other week and after both of those therapists and Dr. T sent in noted to Providence Children’s Development Institute in hopes that he could be seen sooner than the 9+ month wait and after only 2.5 months of waiting we got in!!!

Dr. G, the DP (Developmental Pediatrician) is amazing. She is a new doctor at the center and had done extensive work at an Autism Research center in UC Davis. She made copies of his NWRESD eval report and his IFSP paperwork and gave me an Autism diagnostic questionnaire for his teacher and myself. When we came back a month later she showed me the results, made me copies of it, and was talking about hings from the eval that she had taken copies of the month prior. It was AMAZING to have a provider that actually took the time to read the EXTREMELY detailed play-by-play write up of the entire 3.5 hour evaluation that he went through. She quoted things from it from memory and I can’t tell you how happy it made me to know that she actually took that time and effort to be as knowledgeable about my son as possible to be fully prepared for our appointment.

With the results from mine and Errin’s forms, seeing his behavior and interactions the month before and in that current visit, as well as reading everything from his eval report she told me that she agrees with me about him having ADHD and Autism and has us coming back in on 3 Jan for an ADOS (Autism Diagnostic Observation Screening). She is having him continue OT weekly without any breaks, start BT every week instead of every other week, do an audiology screening, and start speech therapy to help with articulation and social communication skills.

I’m sure most people would be upset with this. But I am SO happy!! I FINALLY have answers!! I FINALLY have a medical support team!!! I FINALLY have a plan!!

So, now that you are all caught up on my life thus far, with regards to Killian, *deep breath* how are you??

-The Lazy Mama