I have reached the end of my nearly forty-year career. Retiring makes one reflect, and memory is a strange thing. The where and when of things get lost. That in and of itself reminds us that those parts of the past are ultimately without much meaning. What does matter and what sticks out are the people. What stays with you are the people who have made big impacts.

My first job in the IDD field was as case manager at an agency that oversaw placements of people in private homes. Dorothy lived at Great Oaks Center, a large institution located in Silver Spring on the grounds of what is now Riderwood Village Senior Living Community. When Great Oaks closed, she went to live with the family of one of her staff. On a late winter afternoon, we were headed west on Route 50 toward her house. I was becoming drowsy. I looked over at her and with her characteristic laugh she said, “Want me to drive?!” We both laughed so hard I nearly had to pull over!

About the same time Leroy, a very capable man living in the home of a senior member of Metro’s executive team, decided he no longer wanted to receive support from DDA. It was hard for me to stand by and watch him leave but it taught me that ultimately Dignity Of Risk is not just jargon.

One of the first people I met when I came to QT was Milton. I think the year was 2004. He was living at St. Elizabeth’s. Oddly, I was invited to work with him because he was committed to both the IDD and DBH systems. I was asked to weigh in on which system would be the best fit for him. The day I visited him at the John Howard Pavilion where he lived, what I encountered was something out of Dante’s inferno. Through the chaos and his somewhat limited ability to tell me what he wanted, I offered to help him and asked if he would sign our voluntary agreement. He signed his name and pushed the paper across the table. He then said, “What do you see?” I could only muster a half-hearted, “Your name?” He then said, “I see a proud Mohican warrior. How can you have my back if you don’t know who I am?.” I will never forget the lesson in humility he taught me that day. We were able to help him leave St. Elizabeth’s. He lived for several years in some beautiful apartments but passed away too soon.

I met Roger around the same time. Roger had lived at Forest Haven. It was reported to me at the time that he had spent the first 35 years of his life in a crib. I heard many stories like that at the time. I’ll never know what was true

and what was legend. What I do know is that Roger was a wise soul. He didn’t use words to communicate, but he was smart, funny and always looking to LIVE! All he needed was to be taken seriously. But the people surrounding him at the time were blinded by what they saw as his deficits. With the help of a court-appointed advocate, a wonderful service coordinator and a visionary provider, he lived for close to ten years in an apartment on Michigan Avenue. Over my career I’ve learned that many, too many people with IDD, have too little of the things that the rest of us take for granted: too little money, too few friends, too few options, too little freedom to live life on their own terms.

I’ve had so many titles in my career: Case Manager, Residential Director, Service Coordinator, Lay Advocate, and finally Deputy Director of Programs. But when I’m asked to list my occupation, I always write advocate. All I ever wanted to be in life was a drummer in a rock and roll band. All I’ve ever been in my career is an advocate.

I fear what’s ahead for people with IDD. Unless there is a major change in congress before January 2027, the magnitude of Medicaid cuts is going to seriously threaten a system that is not in a strong position to begin with. I am old now. I’m tired. I’ve run the race. Now it’s time for the next generation to take the reins and lead the charge. I’ve always considered myself to be an optimistic pessimist. If I truly thought things were as bad as I often say they are, I wouldn’t have done this work this long. So, while I have a lot of worries, at the end of the day I do have hope. And so, with gratitude for everything that brought me to this place, I say farewell and I leave you with something I read recently:

“We live on a planet where whales sing songs that travel for miles. Where trees can recognize their own offspring and protect them underground. Where dolphins give each other names and where lightning can create glass in the sand. Where horses can read human emotions. Where rain has a smell before it even arrives and where the ocean can glow in the dark. A planet where the stars we see might not even exist anymore.”