By: Gail Frizzell
Posted on Morristown, NJ Patch
January 30, 2018
At the age of 32, Lauren has never asked for a drink of water, shared a fear or worry, or simply called me “Mom”. For all of these years, Lauren has counted on me to be her voice, to communicate with the entire world that behind those shining, brown eyes “Lauren” exists. Lauren likes country music, chocolate pudding, and feeling the wind in her face. Lauren needs her meals on time, to sleep after a seizure, and doesn’t like crowds. Lauren is a complex individual, aren’t we all? She has complex needs as well.
Lauren does not walk or feed herself. She has intractable seizures and scoliosis. She requires 24/7 care from people who are competent and have come to learn how to read the expressions, noises, and gestures that are Lauren’s singular form of communication. For many years, I was Lauren’s main caregiver. Now, as my abilities diminish, she must rely more and more on Direct Support Professionals (DSP) to provide her care, to be her voice.
Lauren has an amazing team of DSPs who have come to care about Lauren as much as they care for her. But, Lauren’s safety and stability are directly related to the stability of her DSPs. The last time she had a vacancy it took us six months to fill the position. That was for a Monday through Friday, daytime position. Finding someone to work weekends or nights is impossible. We’ve been trying to fill a weekend shift for over two years.
I can’t say that I blame people for not wanting to take on the responsibility and physically demanding work of being a DSP for Lauren. The rate of pay and lack of benefits means that doing this difficult but rewarding work is a personal sacrifice. I am thankful every day that there are people willing to make that sacrifice for my child.
What will happen when I can no longer be Lauren’s voice, shield her from harm, support her unspoken dreams? The DSP workforce is experiencing unprecedented turnover and vacancy rates. Studies show that this is directly related to grossly inadequate pay rates. Too many dedicated DSPs must leave the profession in order to feed their families and too many others use it as a temporary job while they search for something better. If this crisis in the DSP workforce is not addressed, I fear for Lauren’s future. She will not survive without a stable, skilled workforce who chooses to do this important work. She will not survive without DSPs who know her well enough, and care enough, to be her voice when mine fades away.
New Jersey must make an investment in building the Direct Support Professional Workforce that we need, the workforce on which Lauren is so incredibly dependent. Otherwise, I am sure that without my voice to guide her care, she will be left facing a neglected and painful future, where the keys to her needs and safety remain silent pleas behind no longer shining, brown eyes.