Reimagining Quality of Life for Adults with Significant Needs: Finding Holland

Since the tender age of ten, I have been contemplating what will happen to my brother, CJ, when my parents pass away. When I was four, CJ was diagnosed with Autism. And, similarly to how Emily Perl Kingsley felt in her poem, Welcome to Holland, my family dynamic was altered for the better. While some moments were frustrating (aka when he would jump out of the moving car, mimic crying babies, or climb the tallest of trees), when I took a step back I realized that there were times when I, too, did things that were frustrating (aka my middle school years – sorry mom). And from this new perspective, I began to recognize CJ’s many strengths, as he composed beautiful art and memorized the producers of every Disney movie. While living with CJ has fueled my passion for creating my non-profit housing program, “Finding Holland,” I am continuously driven to advocate for equitable housing for all individuals across the spectrum of Autism as well as moderate to severe disabilities.

The Problem

What resources are available when it comes providing long term supports for adults with special needs? While there are transitional and day programs out there, there is little attention focused on future housing arrangements and equitable employment opportunities that are suitable for individuals with moderate to severe Autism. These individuals have numerous strengths and abilities, and they deserve a dignified quality of life. Unfortunately, housing facilities that uplift their abilities while meeting their individualized needs are not readily available throughout the U.S.

My Vision

My house, “Finding Holland,” will work to build a strong community among its members with a state-of-the-art,  integrative wellness center and residential facility for people of ALL abilities. There will be a vision, positive atmosphere, and leadership team focused on supporting people with Autism and creating an “enviable life” with them. A staff of life coaches, occupational therapists, speech therapists, physical therapists, special educators, and therapeutic recreational specialists will provide accommodations to each individual in order for them to participate as independently as possible. Finding Holland will allow individuals to set personal goals, establish daily routines, and discover a “work-life” balance that supports individuals in living their fullest life.

In the realm of education, we have made progress in providing students with equitable access to deeper learning. About half a century ago, most individuals with moderate to severe special needs were institutionalized throughout their adult lives once they “aged out” of the school system. Families, guardians, and professionals call this “falling off the cliff.” However, in my opinion, we have not made sufficient progress in providing equitable housing and work resources following school. In my classroom and in the home I create, I am working to teach individuals how to take care of themselves, express themselves, and develop their communication, in order to have a voice in determining their own quality of life.

The spectrum of Autism is wide and not fully understood, and therefore, there aren’t a lot of resources available for this specific population post high-school. Yes, there are day recreational programs and work programs, but absolutely nothing considered to be a standard, “traditional job.”  Additionally, in terms of residential living, the majority of these programs are private, which requires significant financial resources. Following the transition from high school, the amount of supports available are limited and accommodations within work and residential life often don’t meet the specific needs of the individual. I’ve only seen programs that provide factory work, work programs, and government funded programs with an emphasis on working. We need to mix that up and provide social recreation, interaction, and a work-life balance.

Yes, maybe, right now this is all just a vision, but we need to advocate, collaborate, and use our voices to create equitable housing access for people of all abilities! Together, we will find Holland.

Katie Miles works as a Paraprofessional at Barbara C. Jordan Elementary in The School District of University City. She graduated from Saint Louis University in December 2017 with a Bachelor of Arts in Elementary and Special Education.