Updated: Oct 29, 2020
By Hari Srinivasan
“It's yummy, yum,” said Joe Kaufman when speaking about his most favorite drink, “a tall Very Berry Hibiscus with light ice,” from Starbucks. Joe has an almost contagious enthusiasm for the things he is passionate about. Baseball ranks high with cheers of “Go Giants” and “Buster Posey rar rar rar rar!” Joe also plays baseball for the Red Sox, a local baseball team for special needs individuals.
Joe’s all time favorite group is the Beatles and he enjoys singing Hey Jude. For Joe’s 21st birthday in November, his two brothers, Steven and Michael, are planning to take this “laid-back kiddo” to a bar.
Joe also has Down’s Syndrome or trisomy-21 (a genetic chromosome 21 disorder causing developmental and intellectual delays). While Joe’s family is excited to celebrate Joe's 21st birthday, they are also concerned about what will happen with his services as he transitions to "adulthood". In a recent conversation over Zoom, Joe along with his parents, Doug and Jen, chatted about his interests as well as their hopes and aspirations for his future.
For families, the approach of adulthood for their disabled child is often fraught with worry. Age 22 means the “services cliff”. At age 22, individuals automatically exit the four year post secondary program that follows special education. Along with it go all the supports received during those years.
This “services cliff” is an unfathomable concept for families - did the “authority” figures (the deciding policy makers) believe that disability magically disappears at age 22 with the conclusion of the post-secondary program? For most individuals, disability is lifelong and requires a combination of many different supports over the course of their lives. The current system does not seem to know what to do with all the children aging out of the special education system.
Ironically, the “services cliff” often aligns with parents who are aging and, as a result, will become less and less capable of supporting their disabled child over the following decades. Thus for families, the “services cliff” phase presents an almost nightmare scenario as they flounder to figure out how their adult-child will be supported for the rest of their lives.
It is critical that families receive support, especially around such critical decision making junctions. This is right where NeuroNav fits in. NeuroNav’s trained Service Navigators help families navigate the unfamiliar terrain of the disability system, match support services, and plan for the future. Such planning has to span every area of the individual’s life - from housing to day activities and even to what makes a client wake up feeling content each morning.
Disability is not without its set of challenging behaviors unique to each individual. Despite Joe’s generally happy disposition, he has sensory sensitivities; Jen says that if agitated Joe can be loud, especially outdoors, sometimes bordering on the mischievous. Jen thinks that these outbursts could be a coping mechanism allowing Joe to stay in the moment.
The pandemic has especially hard on the special education students across California, further highlighting the importance of adding flexibility into the system. Right now, because of the shelter in place, Joe has lost his routine and there's nothing in place to help him adapt.
Joe misses going to school and being able to sit with his friends on the school bus. Jen sees him getting stuck and perseverating over finishing any glass of water that is around, and thinks this could well be another coping mechanism in dealing with a world that has suddenly become very small. On the other hand, “shelter-in-place” has given them the opportunity to see how much he’s grown over the last few years. Doug has observed that Joe no longer engages in his long-standing behavior of creating patterns of sounds with plastic coat hangers. While they have loved getting to spend more time with Joe, they see how much he misses his friends and his routines.
Now that Joe is turning 21, the family’s priority is to identify a suitable day program. They had been working with the school district to identify programs in San Mateo County when the pandemic hit. Joe’s family think it’s important for Joe to be appreciated for who he is and what he brings to the table and to be as independent as he is able to be. They also want him to engage in tasks that will help his self-worth. Joe has held down jobs, like hanging clothes at Old Navy, as well as making and selling dog biscuits at his school. He'd like to work in a sandwich shop selling sandwiches. Joe is also interested in back room office type of work like paper shredding. Joe’s family is excited to have the support of NeuroNav to help find opportunities for the immediate future and beyond.
At home, Joe is a big helper - he makes his bed, sweeps, and helps with the dishes and laundry. As much as they would like to have Joe continue to live with them, Jen and Doug feel the home environment is too stagnant for him. They’d like Joe to live in a stimulating environment with other adults his age and with multiple levels of support. His family also wants Joe to be close enough to be involved in all of the family activities.
Such decisions are not easy in a world that is not well-defined in terms of services and support for people with disabilities. Even the things that should be straightforward, like applying for Social Security benefits, can feel like giant tasks because there’s so much fear around getting it right. NeuroNav helped give the family the information they needed and walked them through the process to make sure they didn’t miss anything.
Jen pointed to all these upcoming decisions and their previous success with NeuroNav as the reason why they’re continuing to work with the company. She felt NeuroNav was the appropriate navigator for their family - they are the right team to have on her family’s side to find the right place for Joe, the right work environment, the right future.
“We’re just starting this. It’s nerve racking for the parents. We want Joe to be happy and healthy and have something that makes him feel good about himself.”