The IEP Strategist: What schools and parents both need to know
Q&A with Kim Kizito, The IEP Strategist
I have something special for you today. I started following The IEP Strategist Kim Kizito, MEd, on TikTok a long time ago and loved her content. I knew she would have some wonderful insights for this longer form, too, and I’m so glad she agreed to this Q&A. She’s hilarious and insightful. I hope you learn as much as I did!
MM: How did you get started as an IEP consultant? What keeps you coming back to this work?
KK: First...I am The IEP Strategist. I took, like, five whole minutes to come up with that job title so you’re not going to take it away, lol.
My oldest daughter is autistic. She was officially diagnosed at around 26 months, but I recognized the signs when she was 10 months. She’s 15 now and as hard as it is to believe, people still weren’t really using the internet back then (2007). I recall that I didn’t have Facebook at the time, iPhones were just starting to get popular, etc. I feel like the advocate in me started way back then. I was lost with very little resources aside from outdated books. I knew one person who had a son with autism.
All states have to adhere to something called Child Find. It’s one of the parts of the Individuals with Disabilities Education Act (IDEA) that states — paraphrasing here — that all states have the responsibility to find every child from birth to age 18 that has a suspected disability, and evaluate them to determine if they need special education and related services.
For my daughter, I mentioned autism and no one believed me. “She smiles too much,” “She’s too interactive.” I recall the third pediatrician I saw when my daughter was 15 months old (I’d get to number six before she was diagnosed). That pediatrician also didn’t have much to say. But I held my daughter up to my face to show her that she would not look me in the eye (this was one of very few things I knew about autism at the time — many autistics have trouble maintaining eye contact) and she said: “well, you can call the Department of Developmental Services and they’ll come out and look at her.” She was very lax about it, as if it were a throwaway comment like: “Whatever.” I had no idea that all states have early intervention for children from birth to age 3. I remember asking the pediatrician what they would do and she said (again in her nonchalant tone): “They’ll probably tell you to put her in daycare so she can socialize more.”
I neglected to mention that before marrying my husband, Simon, I told him that whenever we started a family, I wanted to be a stay-at-home mother. That shocked him because at the time I was a Senior Education Consultant with a Fortune 500 company. We married in 2004 and our daughter was born in 2006. I was anti-daycare at the time, but I thought: ‘Here I am, sacrificing my master’s degree and my career to raise this little girl.…’ I was NOT one of those people who went skipping into becoming a stay-at-home mom. I most definitely viewed it as a sacrifice. I have changed a LOT since then. Especially as a working mother, lol. No one can pull me into the mommy wars about which is harder or better, lol.
I should tell you that I am an adult with an ADHD diagnosis. I’ve had it as long as I can remember, had no clue what ADHD was until I’d first heard the term in 1995. That was four years after college (I was born in 1969, so I’m 52). I wouldn’t do anything about it until about four years ago. I’m only telling you this because I ramble and I realize that we are still only on the first question.
Now to your actual question — I was lost for the longest time until our daughter was leaving kindergarten. She’d been in what was called the “behavior” class. It was self-contained for part of the day — seven kids (all boys, and my daughter, lol). Then they’d mainstream into the general education kindergarten class for different times. My daughter could do the grade-level work (she was actually above grade-level academically) but needed help learning how to function in a regular education class.
During her IEP meeting at the end of the year, the team said that she was ready to go into full-time regular education. I wasn’t ready for her to and wanted her to have more support. I left the IEP saying I needed time to think it through. I ended up contacting an advocate through a nonprofit and she came to the next meeting, sat quietly and listened and asked a few questions, then agreed with the others that my daughter was ready.
I was shocked. But I also knew that this advocate had a great reputation in the area. I recall asking her how to get into advocacy and if I could volunteer as well. She chuckled and told me her position was a paid position. She would go on to hire me a few years later! As I started training under her, I started posting tips on Facebook and helping friends and family with their IEPs. I found the whole thing fascinating. There is always something new to learn and I get a kick out of knowing that I am helping parents understand how to help their children.
MM: It sounds like you are very busy, with clients all over the country. Have you noticed any patterns of issues, such as regional differences or those based on age, race or type of disability?
KK: I haven’t had an IEP in all 50 states yet, but I believe I am past 25. It is interesting. I am incredibly open about California being one of the states that seems to present with difficulties. Typically for the IEPs I have done in several different counties there, the teams do not fully understand the IDEA. That is typical on almost every IEP I take on but some states just need to be pointed to their own policies (which all stem from the federal IDEA statute). In California, it’s almost like pulling teeth to get them to recognize that, yes, this document says you need to do these things and there really isn’t a choice.
In terms of disability — there is a lot of confusion over the fact that the IDEA looks at all disabilities the same, regardless of severity. By that I mean, if a student has a medical diagnosis of ADHD, their grades are passing, but they’re always in trouble for their behavior, or they’re only passing because it takes them three times as long to do homework at home, that student has just as much right to be evaluated for special education services as a student with a more visible disability or one that has clear cognitive issues. I spend a lot of time explaining the executive functions of the child with ADHD vs. that of a child without, as well as how ADHD is considered a disability in the IDEA and that some children need specially designed instruction to help with those executive functions.
Regarding race, I can’t say I see a distinct pattern in my own work, however there is clear documentation of patterns in kids of color where kids are being over-served or underserved and disciplined at higher rates. So much so, that all states must report these numbers and they’re rated based on these (and other) numbers. If they are over/under a certain percentage, the entire state can be flagged and be in danger of losing IDEA funding. It’s a big deal.
MM: What is the most common misconception parents seem to have about their child’s IEP rights? What information seems to help them the most?
KK: I find that most parents either don’t have a disability, or like myself, have one, but didn’t get formal help for it in school. We want to trust the school and the people taking care of our children. And we should. But unfortunately, there are situations where, like I said before, the school doesn’t understand the policies, and just go year after year doing what they “think” is right. Or there are a select few who do understand very clearly and know that funding is scarce so THEY play gatekeeper with services. Parents blindly trust that what the school has told them is the truth.
The information that helps them the most is doing their own research by starting with their state’s procedural safeguards. (Note to my many Oregon readers: Here’s Oregon’s.) I tell all parents to sit down with a highlighter and a cup of coffee and take about an hour to read through the safeguards to fully understand their rights. The safeguards typically explain the process for obtaining special education from the evaluation through the development of the IEP, deadlines, and procedures for due process.
MM: Same question but for teachers or school staff. What do you find yourself explaining most often to school employees?
KK: That a child with a suspected disability (or one who has an actual medical diagnosis) has the legal right to receive a full individualized evaluation — TO INCLUDE NORM-REFERENCED TESTS DONE BY A SCHOOL PSYCHOLOGIST. Furthermore, if the child already has an existing medical diagnosis that falls into one of the 13 diagnostic categories in the IDEA, the parent can request this initial evaluation regardless of the school wanting to “wait and see” or “gather more data” before referring the child for special education.
MM: Is it harder to coordinate large IEP teams — such as those for a child with multiple or complex disabilities? What are some tips for getting a large group like that on the same page?
KK: I’ve never had a problem. Typically, only one or two people in the meeting do most of the talking. If the team is large (I've had up to 11 people in a room at one time), staff take their turns explaining their contributions. For example, the speech therapist will read his/her part in the IEP, how the child is progressing, and what goals they recommend for the year.
In contentious IEPs, where the parent disagrees with something, typically the LEA (Local Education Agency — this is usually the principal, assistant principal, or someone at the district level) will go back and forth with the parent. I have been known to defer to the expert in the room, to ask that person’s opinion, since they are the one the parent disagrees with.
MM: Any final thoughts or particular messages you want to get out in the world?
KK: To parents — when you’re told that you are a part of the IEP team, take that seriously. Don’t just attend the IEP meeting, nod your head, then three years later complain that your child isn’t getting the proper services. Ask questions, ask for clarification, ask permission to record every meeting at least a week prior.
Read the IEP a day or two after you receive it to make sure it covers everything. If it doesn’t, call another meeting or ask that it be amended. You do not have to wait a year to have another meeting.
Do your own research on things that help your child and communicate with teachers and staff. Find out what they’re doing, and ask them to show you how to do it at home (parent training is a part of the IDEA!). Develop a relationship with your child’s teachers by checking in or telling them how you like a lesson. I try to make sure that front office staff (pre-COVID) know me by name (and I know them), knows my child. I make sure to meet everyone that works with my kids and check in with them once a month at a minimum.
I strive to make sure at least 95 percent of my interactions with the school leave them feeling good about something they’ve done. If I’ve done that, on the occasions when something goes wrong, then I find that the school will bend over backwards to try to make things right. Every single time.
Medical Motherhood’s news briefs
• From the New York Times: “While Politics Consume School Board Meetings, a Very Different Crisis Festers”
…And with the ranks of classroom support staff worryingly thin, everyone talks of an alarming crisis in student mental health, a concern already serious before the disruptions of Covid-19. Behavioral problems have mushroomed, there have been suicides and attempted suicides, and a huge share of students seem to have become disconnected, at a loss when asked to do things as simple as gather into groups.
….The superintendent, Abram Lucabaugh, said he was spending a lot of time with lawyers these days, with the district now facing several lawsuits. He would rather be addressing urgent school matters, he said, the most serious of which is the state of student mental health.
• From the BBC: “Swansea Bay: Apology over disabled children's care”
[The report] added: "Parents were found to be frustrated due to poor communication and relationship management from the leaders of the CCN service, leading to a breakdown in the parent/service provider relationship.
"There was a perception of sanctions being imposed by the service should families complain leading to a lack of trust and/or total breakdown in the relationship with the team."
• From Bloomberg Businessweek: “How Child Care Became the Most Broken Business in America”
The U.S. isn’t completely alone in child-care hell. During the pandemic, governments awoke to the reality that their economies rely on working parents and that they needed to better support them. Canada is considering a national system modeled after Quebec’s, which has been around for 20 years and currently charges parents about $8 a day. Australia made child care free for three months last year before expanding its subsidy program to cover as much as 95% of families’ costs. France, long considered the gold standard of early education, didn’t have to do much; its government-subsidized creche system for kids up to age 3 dates to 1844.
The U.S. doesn’t have an existing program to fall back on, so it’s scrambling to catch up. Build Back Better would drastically reduce child-care costs for many families and help some of the 2.2 million women who dropped out of the workforce during the depths of the pandemic return to work. But its success hinges on how it’s adopted by individual states.
The act won’t create an entirely new child-care system from scratch. All it would do is make money available for states to do it themselves. To receive federal funding, state plans have to meet certain criteria: a bump in worker pay, universal preschool for all 3- and 4-year-olds, and a subsidy program that makes day care completely free for low-income families, capping costs for others at no more than 7% of a family’s income, given certain qualifying parameters. States can decide to take money for preschool but reject additional funds to subsidize other forms of child care. Or a state could call all this communism and do nothing.
Medical Motherhood is a weekly newsletter dedicated to the experience of raising disabled children.
Visit the Medical Motherhood merchandise store to get a T-shirt or mug proclaiming your status as a “medical mama” or “medical papa.”
Replies to this email go directly to me, Shasta Kearns Moore.