What Happens To Our Exceptional Learners After They Turn 21?

      When we enter the world of special education as teachers, we are told of some standards which are “set in stone,” for our students. Every student is entitled to a Free and Appropriate Public Education. Every child who qualifies for special needs services receives a personalized and Individualized Education Plan, which is revised at least every year to reflect the needs of the child.

      Another important idea that is ingrained in us as special educators is that each and every student with special needs, post 21, should be gainfully employed given the right services. However, this last sentiment is obviously a lie.

      How do I know this? I know this because “gainful employment” rarely happens with individuals with mild to moderate disabilities, let alone individuals with severe disabilities.

      In the past, I have taught students who are the 1% of the 1%-- they are the children with the most severe needs out of children who have special needs.

      Many of my students are unable to physically leave the building to go to school, often have regular medical scares during school such as their trach becoming loose, which then causes their oxygen rate to drop rapidly, and immediate medical attention.

      This is all just a part of their daily life as a child with severe medical and special needs. As of now, these children receive 5 hours a week of special education services, along with related services, as ordered by the state of Pennsylvania. If this is the time and amount of education and services these individuals receive as children, what do we envision and expect for these children to receive when they are no longer school age?

      What is the plan that we have in place for these children, who should be “gainfully employed given the right services,” after 21, as believed by the state of Pennsylvania? 

      To be honest, I am not even sure what I envision as the true reality for my former student’s lives post-21, and I was their teacher. I can tell you what I hope my student’s lives will look like post-21—including meaningful interactions with staff and nurses, engagement in recreational and other therapy activities, and overall interaction with others.

      I can tell you what I write in my IEP transition goal section for my students as well. Employment goals such as, “Johnny has a goal of adult in-home programming after graduation” and independent living goals such as “Johnny will receive 24-hour nursing care in an adult facility after graduation, he will access the community with support from the residential facility” are written in my student’s IEPs.

      However, what I hear will typically happen to my students after they turn 21? Well, some students can go to facilities that offer experiences to interact with others, as well as a caring nursing staff. However, as far as I know, there is only one such facility in the local area that accepts adults that have this level of need, and this facility also caters mostly to individuals under 21. 

The sad reality is that most of my former students, once they graduate after they turn 21, move into nursing homes.

      Yes, you heard that right—21-year-olds moving into nursing homes for the elderly. These students with severe needs will end up living the rest of their lives with individuals who are not their age, not close to their population of need, and live somewhere where they will likely not receive much, if any, specialized and individualized attention other than medical attention.

      The most troubling aspect of this reality is that these students will go from 5 hours a week of instruction to the bare minimum of interaction—if they are lucky—or, most likely, no interaction at all.

      This not only fills me with sadness and frustration, but this also angers me. To me, this shows how much we, as educators, policy changers, politicians, and citizens “give up” on children like my students once they turn 21. It shows me how, now we can be “done” with these students by dropping them off at the most convenient location that will keep them alive. To me, it sounds like in the wake of this reality, we feel hopeless at best and apathetic at worst.

      However, in the wake of this reality, I would like to ask—how dare we write off these individuals, who already need as much support as they can get? How can we feel comfortable putting these young adults in this situation simply because they need full time nursing and there is “nothing else”?

      Are these individuals not as valuable anymore once they turn 21? Are they not as valuable as other 21 year olds? Or, is it just difficult, or uncomfortable for our society to think about these individuals growing up, so we choose not to? Is there not as much money in creating facilities for these individuals? Is there not enough of a “need” yet to create facilities that would cater to individuals like my students? 

      Because my students are the 1% of the 1%, I will give most people the benefit of the doubt and will make the argument that most people barely know of their existence, due to the fact that these individuals make up such a small population. Not only are these individuals “unknown,” but they are one of many societal changes we are facing currently.

      Compassion fatigue truly exists, and with other atrocities occurring in the world—hunger, crime, violence, systemic racism, and hatred—it can be difficult to think about everything and everyone all at once, let alone a small population of children with severe medical needs. However, in this case, I would like to make a very important counter-argument to this ever-popular sentiment—

As a society, we should be judged not by how we treat the majority of our individuals, but by how we treat our most needy individuals.

      And in this case, these children ARE the most “needy” individuals, and their needs just don’t go away once they turn 21. When we as a society stop thinking of those who need help the most, I fear we begin to forget our compassion, our humanity, and begin to think solely on our own self-preservation.

      This could eventually lead to society as a whole begin to stop caring about important causes, such as not caring about special needs individuals entirely. With the rate of individuals with special needs rising, and not enough government money to support these individuals as they age, society may become “fed up” with supporting them. This would only be the beginning, however. Once society begins to stop caring about individuals with special needs, where would the apathy spread next? I fear this answer.

      I know that the above scenario dramatizes my point of not providing appropriate post 21 care facilities to students with numerous needs. However, it feels discouraging, especially as their teacher, to imagine these individuals alone, without interactions or the ability to work on skills they acquired throughout their entire school careers solely because it isn’t easy or on the top of people’s priority lists to create an environment which would allow this. Would you attend years of school, and college, just to be put away to never use the skills you have acquired ever again?

      The above problem is not the receiving nursing home’s accountability, who hasn’t been trained to care for or provide services to these individuals that match the services they received under 21. These nursing homes have other patients to care for and provide medical attention to.

      I also understand that a main element of this issue is due partly to the small population of these individuals. Many government programs and officials simply do not think about these individuals, and certainly do not think of the needs they will still have when they are older than 21. In fact, these politicians are more concerned with the ongoing debate of whether or not we should even have sheltered workshops. Because of these current matters, these politicians and lawmakers most likely have little time of anything else.

      However, if I can do anything as an advocate and teacher during my career, I would love to try to challenge individuals to think of my students more, especially in regard to post-21 life. I would aspire to create more awareness about the need for individuals with severe needs to continue to have the same rights as other individuals with special needs in this state.

      If our goal is to hold students who have special needs to the standard of obtaining “gainful employment,” shouldn’t that mean not pushing individuals with severe needs into a nursing home on their 21st birthday?

This article was submitted by Lauren Marcinkowski contributing author for ThatMusicTeacher.com. Interested in becoming a contributing author? Email resume and writing sample to [email protected]