Who Am I and Where Did I Come From?

While my very first experiences with people with developmental and intellectual disabilities were during grade school and onward, my direct experience came as a new teacher out of college. At 23, I graduated from the University of Louisville. I was offered a teaching position at a local private school specifically for children with learning differences. I was a young teacher. While I had about 5 years prior experience working in schools, with children and families, I recall feeling stressed by the possibility that I would not be an effective teacher. Of course, this was not true. I developed my own slogan that “anything I say yes to, I give my best to”, and that’s exactly what I did. I gave 5 years of my very best to this remarkable school that loved me more than I loved myself at the time. It created and shaped the foundation of my personal and professional confidence. I grew up as a teacher–a time when I thought I already had. I remember standing in my first-grade classroom telling myself that if I could do this, I could do anything. It wasn’t tough because the students were challenging. It was tough because I was young, uncertain; afraid of failing children! I quietly knew better, and any child who walked into my classroom was going to leave that room a happier, more confident young person. I remember thinking that, too. Whether or not they learned a “p” from a “g” from a “7”, they were going to feel good about who they were as a person. If they were a good artist, I made sure they knew it. If they were a good athlete, I made sure they knew that, too. I recall a young child whose mother was told he would never learn to read. He was my best reader.

I dreaded the first Monday of each month The principal called it “Pastries with Parents”. She would bring rather large groups of families on tours into the classrooms while we were teaching. Yikes! For 5 years, I anticipated and endured the anxiety of this. It was only during my fifth and final year that I was told that she only brought parents into the classrooms she considered best, the classrooms that sold hope to parents. I recall her bringing one parent into my classroom where they stood for a good while. They watched me work around a kidney table with 5 struggling readers. (Side note: the principal thought I was patient, hence, the labor of teaching “struggling” readers was mine. She was also intuitive and experienced, so my math class was comprised of 8 future engineers, math whizzes-if you may, to balance out the daily demand of teaching). As you can see, I grew under the guidance and platform of those who believed in their mission and believed in me as a young teacher who shared the same ambition. I just didn’t know it at the time. I wish the older me could reassure the younger me.

The principal and parent left my classroom, only to return for a tissue because the parent was crying in the hallway out of hope for her child. Twenty years later, I still recall this memory. It was my last year of teaching. Today, I still believe that the classroom may be where I shine the brightest. It may be what suits me best, where I belong. But I moved on. I hope I don’t sound like I’m patting myself on the back, but the younger me could’ve used a few of those.

In 2009, I found an equally noble endeavor. I wasn’t looking for “noble,” but I wanted to make a difference. I knew that I did not belong behind a desk—not that there’s anything wrong with that. I just knew that my influence, my gifts (whatever I believed them to be in my twenties), my contribution to community–belonged somewhere else. I discovered Kentucky’s Waiver Medicaid programs that support children and adults with intellectual and developmental disabilities. I came recommended from a psychologist in the field who thought I would make an excellent case manager and advocate. I didn’t know that she would be right. Again, I’m not tooting my own horn. I’m unfolding the steps, the map, of how I came to be. Once again, anything I say yes to, I give my best to. I grew up far more interested in science, archeology, history. Heck, I had a glimmer of interest in practicing law! But, I landed in a field working with children and families. I think it’s where I belong. Through this endeavor, I learned about Kentucky’s very ugly history of mistreating people with disabilities. That injustice belongs to the entire globe. How we treat others is a reflection of ourselves, our broader communities. This was an opportunity. This was something I could believe in. Something I could help someone through. Something I could do that means something important.

I already knew about prior authorization. I was already familiar with service plans and “units”. I was mature enough to know that being polite and reliable were necessary strengths to build relationships. However, I don’t think I expected to become the advocate that I am. I recall a department figure meeting with me and our company’s team of case managers. His name was Raymond. He empowered us to be advocates, not only for the waiver participants but for the waiver itself. I became a believer in the mission of the Waivers to change lives, negative perceptions, and to promote the same love and liberties for people with disabilities that the broader community takes for granted. Kentucky’s Waivers are generous, humane, well-intended, a good use of tax dollars, and certainly a good use of my professional time. I lean on this belief to deliver my very best to others.

I grew as a professional and as a person. I learned the impact of effective communication. I learned how language can promote understanding when used as a tool to advocate for a person’s quality of life, their dreams, their goals, and to ease the mind of worried parents and family members. I also learned how important it is to work as a team, to be understanding, to humanize others, to be mindful and inclusive of the “people taking care of the people”. This can be difficult as not everyone shares my opinions. Not everyone agrees with my personal mission or even the mission of the Waivers, yet we must still work together on behalf of the individual and families who are relying on us to do so. I learned that I was still going to be the person and professional I am no matter what others do. I owe that to myself, as well as the people I agreed to support. I want them, their families, and team of providers to have a good experience as a result of working with me.

What is a good experience? Well, people with intellectual and developmental disabilities have an arduous life of uphill battles, disappointments, discrimination, judgment, exploitation, neglect, and abuse. Their families endure this with them. I committed myself to minimizing added trauma by helping them navigate a Medicaid Waiver program towards their best experiences. I wanted to convince them that the mission of the Waivers have their best interest at heart and that I do, too. I wanted to explain the realities of the Waiver field, the ups and downs, while connecting them to the resources I felt would boost trust, safety, support, and hope for a future they didn’t know was possible in Kentucky. I hope I delivered. I’m still “in it to win it.” I walk the walk. I talk the talk. I don’t have to convince myself that it’s right for them, it’s right for our communities, and it’s right for me.

If I sound ideal, that’s because I am. It is what I pursue for myself, and in turn, helps advance others. I hope. I work towards it! I continue to assert that the field has my best. I include everyone. I am not a perfect provider. I invite the insight and feedback from others in the field, especially from those whose role is to provide that wisdom. Kentucky’s Waiver Division functions as a guide—to see providers through the regulatory requirements intended to support the safety, health, welfare, and rights of the participant. I agree with that, or I wouldn’t be doing it. This is a positive quality that fellow providers appreciate about me, about Sage. I want it to be clear that the Waivers are intended to promote a life of liberty, choice, and joy for a vulnerable population who needs our help. This is the job I signed up for and what I promote through advocacy, through language, through action, through a commitment of understanding, through partnerships, and most importantly, through treating people with dignity and respect. I do not need a job description to teach me that at this stage in my life. Incidentally though, dignity and respect are at the very core of Kentucky’s Waiver mission that supports people with disabilities to pursue the same life, love, and liberties we all want for ourselves. I want, I hope, I choose to help make that journey easier for them.