Her AIM is True

by Annette Jett

As social beings, we need others to survive and thrive. For many of us, friendships are formed naturally with little effort.

We meet someone and connect through our common interests. After discussing our likes and dislikes, wants and needs, desires, hopes and dreams, we decide over time whether we will form a lasting bond.

However, for individuals with disabilities, these natural supports can be more difficult to attain.

According to the National Core Indicators study of individuals with disabilities receiving care through the Supported Community Living Waiver, Kentucky falls sorely behind national averages when building natural supports.

In 2012-2013, only 48% of Kentuckians with disabilities reported having friends who are not family and/or paid staff, compared to 76% nationally.

What prevents the building of natural supports? Barriers to communication, perceptions, accessibility and inclusion all play a part.

Ten years ago, words like disability, advocacy, inclusion, natural networks and accessibility were not part of my regular vocabulary.

Actually, they weren’t even on my radar. Most people don’t think about these things until they impact them directly.

Thankfully, that all changed with the birth of our first child, Gracie. In our case, the diagnosis was rare, Agenesis of the Corpus Callosum (ACC), meaning that our daughter was missing the middle piece in her brain that connects the right and left hemispheres.

Little was known about ACC at that time, and manifestations of the syndrome, which can include autistic-like symptoms, vary considerably.

Gracie, now 10, is an active fourth-grader in a public school in Lexington. Her IEP plan and strong adaptive skills help her overcome global delays and learn at her own pace.

Much of her disability is hidden except that she wears a brace on her right leg and a smaller one on her left foot because of balance and mobility issues associated with ACC.

At the time of her diagnosis, there were no local parent groups to call on, and no children nearby whom we knew of with the same disability.

We felt lost in our new world filled with unknown territories.

As a family, we put much research into our daughter’s diagnosis, as well as the medical and community supports that she needed.

By the time our daughter was 4, and her younger brother, Charlie, was 2, we realized that navigating these systems was a full-time job.

With complete abandon, I made a mid-life career change as a caterer and restaurateur to caregiving and professional advocacy.

My journey took me back to school, to the Human Development Institute (HDI) at the University of Kentucky.

While completing the Graduate Certificate in Developmental Disabilities offered there, I was catapulted into an amazing network of like-minded mentors and colleagues all committed to improving the rights of individuals with disabilities.

It was there that I learned that among emerging issues perhaps none is more important to the disability community than the creation of natural supports and improvement of accessibility.

To the 30% of Kentuckians considered to have a disability, these concepts are often a precursor and solution to other, larger issues such as housing, transportation, employment, health and quality of life.

Recognizing this, I, along with fellow parents, self-advocates and industry professionals created Build Inclusion, Inc. in 2014, with the intent of facilitating natural networks and community access for individuals with disabilities through education, engagement and employment.

The company earned non-profit status in 2015 and delivers services in a cross-ability environment.

Our flagship program to date is AIM! Advocacy & Inclusion on a Mission, which teaches young students about concepts related to disability, as well as the power of advocacy and intentional inclusion.

A call to action, AIM! is generally delivered during a week-long event at elementary schools but can also be adapted to afterschool, scouting, church and leadership programs.

Approximately 15% of public school students in Kentucky have a disability that requires modifications or accommodations through an Individualized Education Plan (IEP) or a 504 Plan.

Children are curious about their classmates. Often, they don’t understand their behaviors, or their physical, emotional or learning differences.

This can result in children making their own assumptions about their peers, which ultimately can block the formation of friendships that happen naturally for their counterparts without disabilities.

During AIM! events, self-advocates and industry professionals are on hand to debunk the myths and stigmas surrounding disability by encouraging questions and conversations in a safe and informative environment.

The theme “exclusion isn’t always intentional, but inclusion must be” is emphasized throughout the program, and the curriculum is designed to help students, staffs, families and community members form positive perceptions as they learn about topics ranging from adaptive recreation, universal design, assistive technologies, empathy versus sympathy, self-determination, disability etiquette and more.

The ultimate goal is to create a culture change among our youngest generation of future leaders.

Of course, you do not have to formally participate in an AIM! program to carry out the principles of its mission, and you do not have to be a parent, sibling or self-advocate to be impacted by disability.

As a community, we all have a responsibility to look out for each other and to use our gifts and talents to build each other up.

How do you participate in this movement? Look for or create integrated opportunities that encourage intentional inclusion and provide necessary supports from leaders, team members and peers.

When Gracie started cheerleading in the same inclusive league where her brother played basketball, she looked forward all week to her Friday night practices.

As parents, we were formally dismissed at the door of the practice room where we waited patiently in the lobby until we were called back in to review what they had learned that night.

The first time Gracie went in alone, I felt nervous. What if she fell? What if they didn’t understand what she was communicating? What if…??

She held her own. She learned the cheers and even made a few friends.

Her coach set the tone for the rest of the team to treat her with the same respect and dignity that they showed all of the other girls.

Gracie participated fully in the half-time shows and the after-game parties. Just like at school, accommodations were made for her as needed (like providing a chair when sitting and rising from the floor became too difficult).

Gracie learned a lot there. Her dad and I have learned even more. We learned to allow her choices and to encourage her self-determination.

We learned to let go, even if just for a little while, and to expect great things, not only from our children, but from our community.

Annette Jett, MBA, is a Parent Advocate and Community Inclusion Specialist and the Executive Director of Build Inclusion, Inc. She also is a member of the Commonwealth Council on Developmental Disabilities.
She resides in Lexington with her husband Frank Bickel, and their two children, Gracie, 10, and Charlie, 8. Info for Build Inclusion or to book an AIM! event: www.buildinclusion.org.