Part 2: The DSP shortage is turning lives of people with disabilities upside down, including mine
February 5, 2019 by DRO Board Member Susan Koller / community integration
This blog post is the second in a two-part series Susan has written about the direct support professional (DSP) shortage and her choice to move into an intermediate care facility (also called an ICF/IDD). Read Part 1 here.
An Unexpected Option
While my life is the most significantly impacted by the provider shortage, everyone in my family experienced this problem. My brother also started looking for solutions, and he found a long-term living facility (ICF/IDD) specifically for people with neurological disorders an hour from my home. The facility is technically a nursing home, but it isn’t your typical nursing home for the elderly. There are other younger individuals. The average age of the residents is about 60. With the exception of two rooms in the facility, everyone has their own private room. There is also free Wi-Fi because a lot of the residents use computers. The residents are also encouraged to find their own life outside of the facility. Since almost all of the residents are severely disabled, the facility has overhead and stand lifts that I need. After visiting the facility, I decided to put my name on the ASAP list. They contacted me in just two weeks, letting me know they had an opening. I was faced with a decision I never expected.
The biggest factor that influenced my decision was a single question: What would happen to me when Mom couldn't take care of me? She is getting older and can’t continue doing my care indefinitely. Having no aides meant that if something happened to my mom, there would be no one to take care of me. If that was the case, there was a chance I'd be forced to go to a facility worse than the one I'm in now. At least by making the choice proactively, I had the power to choose where I got to go.
Secondly, I felt my time was so consumed by the aide issue that I was no longer living my life. My mom and I spent way too much time finding aides and worrying about whether an aide would show up to work. The situation was just too stressful. I thought if I moved into the facility, I wouldn’t have that stress because someone would always be there. Ultimately, I decided to take a big leap and move in.
All the staff in the facility are pretty good, and I really believe they truly want what is best for the residents. If I could've employed some of the aides to work in my home, I would've never left. That being said, however, living in a facility is a lot different than I expected. I thought all I would have to do is put on my call light and someone would automatically be there right away. The reality is that each aide is taking care of seven to eight residents, all with very complex needs. Therefore, sometimes it can take a while to get your needs met. I am sometimes reluctant to ask for help because I know the aides are busy, and I don't want to take time away from the other residents. My facility is one of the better staffed facilities, so I can only imagine what it would be like at a facility with fewer staff.
Another aspect that is hard to deal with is that there are many different aides taking care of me. There are three different shifts a day, and the aides each have a different group of residents each day – meaning that you never have the same aide two days in a row. Each aide has a different way of caring for me, so I am constantly adjusting to different styles. This makes it hard to develop a consistent care routine. The aides also have different physical abilities, which also impacts the way they care for me. Back home, my mom and I had developed our own transfer methods, but I can't use them here because all the aides would not be able to do them. Also, those transfer methods take time, and with so many residents that need care, there is not enough time for the aides to do the individualized transfer methods.
It also doesn't help that there is still a lot of turnover and call-offs amongst the aides. The turnovers mean that as soon as you get used to how one aide takes care of you, that aide may no longer be there. The call-offs mean that the other aides are working short. They understandably get frustrated by this, so the problem becomes cyclical. Why is there such a high amount of turnover and call-offs? There is no other way to say it: being a caregiver is not easy and the pay is horrible. A lot of the aides get burned out and choose to take an easier job. This is not just happening in my facility. It is occurring in all facilities and in the home healthcare field. It is one of the major reasons for the DSP shortage. To be honest, I didn't think I would face these problems living in a facility.
Taking Action to Solve the Problem
I got tired of waiting idly for this problem to be resolved on its own because it will take voices like mine to let others know how important providers are to our shared goal of community living. I decided to join the Cincinnati Leadership Education in Neurodevelopmental and Related Disabilities (LEND) program as a self-advocate trainee.
The Cincinnati LEND program is part of a network of 52 LEND programs across the country funded by the Maternal & Child Health Bureau of the U.S. Health Resources & Services Administration. LEND is a graduate-level training program that seeks to improve the lives of people with developmental disabilities, particularly children. Trainees come from a wide variety of fields, including psychology, occupational therapy, physical therapy, nursing, audiology, and more. The goal is to train the individuals to be leaders in their fields and to help them learn how to advocate for their patients. Along with these professionals, individuals with disabilities and family members of individuals with disabilities learn how to become better advocates. The self-advocates and family advocates also provide the other trainees with the perspective of living with a disability, which is something that cannot be taught in books. In LEND, we trainees are getting an in-depth education on the fields of developmental disabilities and leadership. The professionals have to complete clinical hours. Since I am not a professional, I am required to do a personal project instead. I have chosen to study the DSP shortage in the hope that I can somehow make even a little bit of a difference. Through LEND, I learned about Disability Rights Ohio (DRO) and recently became a proud board member. As a member of the board, I hope to be an advocate for people with disabilities.
LEND also provides me with the great opportunity to get back out into the community. I leave the facility two days a week to take classes. I am also lucky that my facility has done everything they can to accommodate my desire to take part in the program. My superiors at LEND have also been very accommodating of my needs.
What's Next for Me?
As for what's next for me and my living situation, I have no clue. Living in the facility has helped me realize just how much help I need, so I might stay here because of my needs. On the other hand, I really miss living out in the community. I may do better living out in the community and having aides almost around-the-clock. That way I wouldn't feel guilty about having to ask for help. However, finding round-the-clock aides is very difficult. At this point, I'm weighing my options. The one thing I do know for sure is that individuals with disabilities have a legal and human right to live wherever they choose. The DSP shortage is taking away the right because individuals with disabilities – including myself – are having to live where we can get care and not necessarily where we want. I know I will never be able to live the life I want unless the DSP shortage is solved.
Susan Koller is the newest member of the Disability Rights Ohio Board of Directors. She grew up in Saudi Arabia and moved to Centerville at the age of 12. After earning a Bachelor's degree in Mass Communication and a Master's degree in Public Administration from Wright State University, she worked as Publicity Director for Checker Book Publishing Group and as a pro bono Public Relations Specialist for the Tandana Foundation. She is currently a self-advocate trainee in the Cincinnati Leadership Education in Neurodevelopmental and Related Disabilities (LEND) Program, where her work is focused on the shortage of direct support professionals (DSPs) that led her to move into a long-term care facility (ICF/IDD) in 2018. She enjoys spending time with friends and family, watching TV, walking her in-home service dog, Chia, and reading.