When the Waits were expecting their daughter Mary Catherine 27 years ago, they experienced every parent’s worst fear-- a traumatic pregnancy, premature birth and a cerebral palsy diagnosis at nine months. After the diagnosis, the Waits explored multiple early intervention opportunities and searched for physical, speech and occupational therapy professionals to assist with Mary Catherine’s development. A lack of overall physical and cognitive development and a broad range of medical tests lead to surgery to install a shunt in her brain to relieve the effects of hydrocephalus when Mary Catherine was about 14 months old. Although Mary Catherine has experienced some development, today she does not communicate verbally, requires assistance with mobility, and is fully dependent on others for her daily care.
Currently, Mary Catherine is happily living in a home managed by United Cerebral Palsy where she has been since 2013. She requires help from direct support professionals (DSPs) working in the home with all aspects of her daily life such as eating, bathing, dressing and transferring. She uses a feeding tube to receive fluids and some medications and wears protective briefs. Though basically nonverbal, she has varying sounds, a couple words to communicate and speaks volumes with her eyes and expressions. She is a delightful young lady, however very involved with her care needs. She has had the same room and mostly the same roommates for 6 ½ years.
“What makes us happiest is when we visit Mary Catherine, three or four times a month, she’s happy to see us, but she’s not upset when we leave. To us, that’s a well-adjusted 27-year-old woman living her life independently from her parents and with her people. We feel like any twenty-something would rather be out on their own living their life as opposed to sitting at home watching their parents get old. We did not want to rob her of that. We wouldn't be able to give her that independence and we find comfort in knowing her caregivers support her in the ways she needs.” said Ed Waits of their decision to move their daughter out of her childhood home.
It wasn’t an easy decision for the Waits to place Mary Catherine in a home other than their own, and it was a long road to get her to the place she is now. Although she attended elementary school, middle school and high school through an inclusive disability program, the day-to-day impact of Mary Catherine’s disability took an emotional, physical, mental and spiritual toll on the Waits family. The constant fear of another seizure or some other medical event, the never-ending changing of briefs, spoon-feeding, bathing, feminine hygiene, dressing, etc. and the responsibility of effectively managing that level of care for 20 years lead to the Waits applying for in-home services through the Katie Becket waiver.
Although Mary Catherine has an excellent relationship with her current DSP of four years, Deborah, it hasn’t always been smooth sailing as far as the Waits’ experience with caregivers. Due to low wages and demanding work, there is a high turnover rate among DSPs. The Waits wanted to develop a relationship with one or two DSPs to get to know them, develop a level of trust, train them and get Mary Catherine acclimated to her caregiver. It’s difficult to do that if there’s a revolving door of new caregivers. Luckily, they were able to have a circle of about three to four caregivers that they had such a relationship with.
“If a solid foundation isn’t developed with at least one or two caregivers, then you are constantly in training mode. That defeats the whole purpose of having a caregiver and makes it where the family doesn’t have a free day because they are regularly at home training new caregivers.”
Because Mary Catherine was neither progressing nor regressing, The State of Georgia initially started pulling back her hours covered by Medicaid/Medicare under the Katie Beckett Waiver. Ultimately, Mary Catherine lost all of her in-home support hours. Ed Waits had already started looking into what was next. What did life look like for his daughter after high school? He began writing letters, making phone calls, going to public forums, meeting with lawmakers in his district to advocate for Mary Catherine and the COMP waiver program. His goal was to shine a very bright light on the waiting list, how difficult it is to navigate the system in order to receive services for people who desperately need it, and to gain services for Mary Catherine.
Not only is the system challenging to gain care for a loved one, the caregivers who work in this field are often working two or more jobs to make ends meet. They love the work they do and the individuals they support, but at an average wage of $9.47 an hour, they often leave for better paying opportunities.
“They absolutely deserve more. These DSPs are taking care of a population who can’t take care of themselves--they are absolute angels in our midst, and they don’t get the credit they deserve. The turnover throughout all the organizations is dramatic because of the nature of the work. With the pay they recieve for the work they’re doing, it’s no wonder the turnover is what it is.” said Waits.