I’m an incomplete C4/C5 quadriplegic, so I have always needed help getting ready in the morning and going to bed at night. But once I’m up in my wheelchair, I’m very independent. I was paralyzed when I was nine months old from Transverse Myelitis, and now I’m 38. My family has always been involved with my care, so I didn’t have experience with Certified Nursing Assistants (CNAs) until I was in high school. I knew I would be going to college in the near future, so my mom and I decided that it would be a good time for me to learn what it would be like to have someone else doing my personal care.

From the time I was in high school and throughout my college career, I worked with a home healthcare agency. The agency would staff my CNAs and nurses based on the care plan we created. There were pros and cons to working with an agency, but I learned a lot about managing my care during that time. One of the hardships I constantly endured was when one of my regularly scheduled CNAs couldn’t make it to work or could no longer work my shift, the agency would try to send a new CNA, but that didn’t always happen. My mom would often make the 50-mile one-way trip to Greely, Colorado to help me get ready just in time to make it to class.

Shortly after I graduated from college, a pilot program called Consumer Directed Attendant Support Services (CDASS) was launched in Colorado. It’s a Medicaid-based program which provides me with a monthly budget that I use to manage my own caregivers. I don’t work with an agency and I decide who I hire, their hours, and their wages. Whoever I decide to hire does not have to be certified or hold any specific licenses. This gave me a lot of flexibility because it expanded the pool of people I could hire. I was even able to hire my mom! She does so much for me, and of course never expected payment for it, but it was nice to be able to offer that to her.

I’m currently still on the CDASS program and I live independently in my own home. I work full-time as a sports producer, so I have to maintain a group of caregivers that can work with my schedule. It’s not always easy to find caregivers when I have to replace them, but I have found some great resources over the years. I use care.com, Indeed, local colleges, and word of mouth. Many of my current and former caregivers have helped me find new ones. I really enjoy working with students because they either have a medical foundation or an eagerness to learn. I have hired nursing, PT, OT, and medical school students. The most important qualities that I look for in people are ones that are responsible and compassionate. I have learned that we can teach people my care, but you usually can’t teach people to be good human beings.

I feel very blessed that some of my caregivers have entered my life. I have made really good friends that I stay in touch with long after they are done working for me. They even travel with me, and I’m able to pay them since they are my employees. We have been to places like Hawaii; Washington, D.C.; Chicago; California; and Disney World. One of the best parts of the CDASS program is that I can use my budget however it best fits my needs. For example, I can allot more hours on travel days and still pay them for the hours they are doing my care.

Managing my own caregiving team isn’t always stress-free, but it’s the right overall choice for me. I’m the one who gets calls in the middle of the night if one of my caregivers is sick and can’t come in the morning, and I must starting finding their fill-in right away. Things have been difficult since the COVID-19 pandemic began. Unfortunately, I’ve lost employees and had to rearrange my staffing numerous times because of people being exposed to the virus. But ultimately, I’m the one making those decisions and working with the people I want to work with. I’m not sure what similar programs are available in other states, but my advice is to do your research; you never know what you’ll find out!