Inclusion for Jess: After 21

This is an excerpt for an article that I hope to get in a national magazine, a companion essay to my Memoir, Raising Jess. The topic- Inclusion for Jess, what was it all for? What did we Hope?

For those of you who have read the book and blogs, you know that our daughter Jess age 41, participates in many community, and other inclusive activities. During high school Jess partook in most school events from prom to theater events.

What Happens at 21?

But what happened when Jessica graduated at the age of 21? The quick answer is that laws, regulations, staffing requirements, and funding changed. Day Habilitation is very different from public school.

The amount of grants, resources and energy that is devoted to including individuals in public school activities is extensive and ongoing. Yet, once an individual, who requires services similar to our daughter ages out of school, it’s back to exclusionary settings.  

This is Jessica’s story and the narrative for many individuals who have a severe intellectual disability and need assistance with daily living skills. Many of Jessica’s peers, who have more life skills, are in supportive employment and other inclusive community experiences.  

Services

Jessica’s original program started differently. They explored the community, took field trips and left the building. We connected with many staff and developed relationships. I believe a lot changed after Covid. Jess was out of program for close to three years.

A few months ago, I visited Jessica in her current classroom, saw the lack of interaction and activity and knew it was time for a change.

As Jessica’s dad, Mitch, states – It’s not always the program. It’s often the system. Many new staff start their positions with enthusiasm and the hope that they can make a difference in somebody’s life. Yet, the system, red tape and restrictions often knocks them down. Whereas filling out forms becomes more important than direct care to the individual. And low wages that do not commensurate with the responsibility needed for this profession.

Adult programs require a culture of creativity, respect, collaboration and encouragement. These foundational tenets often overcome lack of funding. It’s the people who make a place, more than the rules or regulations.

Our daughter, Jessica, loves to meet people, visit new places, cherishes music, and enjoys outings. There should be a way to incorporate more community activities into a daily program.

Jess has been in the same day-habilitation program since graduation in 2003. And now after 20 years, we decided to switch day programs.

She started her new program last week. We hope the staff have more freedom and encouragement to be creative and maintain enthusiasm.

HOPE

We Hope Jess will feel tired at the end of the day because she had a full day. 

We Hope that Jess gets to stand in her walker more frequently and is engaged and challenged.

We Hope that Jess is "happy to be there" each day.