IDEA Got People Out of Institutions and Into the Job Market
What does post-grad life look like when you have an IEP?
It is Possible for Neurodivergent Adults to Live Self-Determined Lives
Advocacy, increased acceptance, civil rights laws, early intervention programs, and school-based services have paved the way for neuroaffirming care. If your child does not need an Individualized Education Plan (IEP), you may be less familiar with the special education process in the United States.
I’d like to change that today.
It’s important to note that each family’s experience navigating the special education process in the U.S. is different, usually based on where they live and other socioeconomic factors. I’ve linked a few Substacks from parents of neurodivergent kids below in the footnotes. If you know of others I should check out, please drop them in the comments below!
Let’s Start with IDEA
IDEA stands for the Individuals with Disabilities Education Act, which ensures a free and appropriate education (also known as a FAPE) to any child with a disability found eligible for services in school1. This is different from Section 504 of the Americans with Disabilities Act of 1990. Children ages 3-21 receive special education services under Part B of the IDEA legislature2. IDEA was most recently amended in 2015 through Public Law 114-95, the Every Student Succeeds Act. At that time, Congress provided the following bipartisan statement:
Disability is a natural part of the human experience and in no way diminishes the right of individuals to participate in or contribute to society. Improving educational results for children with disabilities is an essential element of our national policy of ensuring equality of opportunity, full participation, independent living, and economic self-sufficiency for individuals with disabilities.
If you’re interested in learning more about IDEA, you can find additional legislative details on the U.S. Department of Education’s IDEA website.
Why is IDEA necessary?
Prior to federal laws necessitating special education services in schools, the primary option for many families was to institutionalize their children. Once enrolled, these vulnerable children, teens, and young adults would typically remain in an institution or group home for the remainder of their lives, unless the family was able to afford private care.
In 1972, a now infamous documentary titled Willowbrook: The Last Great Disgrace showcased the barbaric conditions these individuals lived in and the horrific ways they were treated at Willowbrook State School in Staten Island, NY. Geraldo Rivera once described Willowbrook as, “a kennel for humanity disguised as a school.” Unfortunately this institution was not an anomaly. The exposé helped bring necessary awareness to the general public, and its glaring evidence spearheaded federal legislation leading to the integration of individuals with disabilities in schools.
This change did not just help children with the highest needs. It has also led to students requiring less support to learn in a “least restrictive environment,” or be integrated into an appropriate learning environment that allows them to socially and academically thrive. So if your child has a language-based learning disability, such as an expressive language disorder or dyslexia, the goal is for them to be placed in a classroom with the appropriate support ratio that keeps them as close to being in a general education classroom as possible.
As you can see in Figure 2 below, children identified as having a specific learning disability, such as dyslexia, encompass the largest percentage of IEP’s as of the 2022-2023 school year—not Autism. A child’s literacy level has been found to have a direct relationship to their employment and financial stability when they reach adulthood3; therefore, nothing is a greater positive contribution to society than helping people to read and learn successfully in an environment where differences are respected and celebrated.
What is a transitions program?
Under IDEA, students diagnosed with a high-need disability (physical and otherwise) can remain in school through the end of the year that they turn 21 years old in both private institutions and public schools. Enrollment in a transitions program is not appropriate for every student who receives an IEP, and each family who qualifies is entitled to continue or withdraw. In the NYC public school system, students can enroll in Transition and College Action Centers, while many private special education schools have their own post-high school transitions programs for students 18 to 21 years old.
Preparing for the transitions process typically begins when the student turns 14 years old, and is completed by a transition team comprised of:
The student, regardless of their developmental profile and language abilities
Their parents/caregivers/guardians
Teachers and related service providers at their school
A case manager or school social worker
A guidance counselor or school psychologist
Sometimes families will partner with an agency or organization, who will send a representative to join these conversations and help plan
For many, the day to day of a transitions program feels like a normal school day. Academic classes are often focused on life skills that build independence, such as budgeting, job searching, interviewing, and cooking in addition to ELA and Social Studies. They will also continue to receive any related services (Speech, OT, PT, Counseling, etc.) that are mandated on their IEP. In addition to core academic classes, students often participate in self-advocacy groups and social groups. Travel training can also be offered, helping students learn how to navigate public transportation safely and independently. This is important even when you grow up in a city and have used a transit system your whole life.
Many schools will assist with coordinating internships and off-campus programming so that students can gain experience learning meaningful job skills. This is similar to what their neurotypical peers are usually doing at this age—finding opportunities to be mentored and apprentice under experts in a field in the hopes that it turns into a job. Sometimes these young adults may even decide to work towards receiving their GED and attending college, as not all students with IEP’s graduate with a high school diploma.
I specialize in early childhood and elementary school-aged intervention, but I have also worked with many neurodivergent teenagers and young adults over the years. As you can imagine, the focus and goals for my sessions are pretty different for this age group. Instead of reading books, we’re discussing media literacy as we research potential jobs. We’re also problem solving uncomfortable interactions with strangers at an internship rather than just conflicts with peers at school. Most notably, there are numerous discussions about personal boundaries, community safety, and self-advocacy.
What happens once they turn 21?
Today, private and state-funded residential programs continue to exist, though their conditions have significantly changed. One highly regarded residential program in New York State is The Center for Discovery, which encompasses both a school aged and an adult residential program.
Since many years of planning go into post-21 life, one would think that graduation would open the door to easy street. Unfortunately, not many industries will hire a wide variety of neurodivergent adults. As of today 30-40% of this population is currently unemployed across all ages, though some companies, such as J.P.Morgan Chase, Microsoft, and Ernst&Young have begun to realize the strengths they bring to their industries. Wells Fargo has even teamed up with The University of Connecticut to create The Wells Fargo Center for Neurodiversity and Employment, a resource, “focused on helping companies harness the strengths of workplace neurodiversity and inclusion.”4
In my experience, many neurodivergent individuals have also found successful employment in service industries, retail, and administrative jobs. If unable to work due to challenges with regulation or medical complications, they may be relegated to day-hab centers or piecemeal programs set up by their parents, which are not always optimal or joyful experiences. Parents want the best for their children, and inclusion should continue into the workplace with proper support.
We are relatively lucky in New York City to have non-profit organizations and private businesses whose mission is to support adults with disabilities navigate life after they graduate.
Here are a few local organizations that I am currently sourcing for a student about to complete their transitions program:
AHRC across all five boroughs
Invictus Bakery in Brooklyn
Pure Vision Arts (part of The Shield Institute) in Manhattan
Cafe Joyeux in Manhattan
You can also check out my list of neuroaffirming businesses here:
Important to clarify: sometimes a child only qualifies for services outside of school. Another topic for another newsletter.
Early intervention services, provided to children from Birth to 3, are outlined in IDEA Part C.
https://nces.ed.gov/programs/coe/indicator/cgg/students-with-disabilities
https://sites.lsa.umich.edu/mje/2023/01/05/the-relationship-between-socioeconomic-status-and-literacy-how-literacy-is-influenced-by-and-influences-ses
https://neurodiversity-employment.center.uconn.edu