Why We Must Eradicate HCBS Waiting Lists (by Carolyn Murray)
Daniel (center) with his sister Melody (left) and his mother Carolyn (right) at Melody’s wedding. [image description: A wedding photo depicting a bride with light skin and long, curly blonde hair wearing a white lace gown and veil stands at the left of a young man seated in his wheelchair. The young man has light skin, short dark hair, and has glasses. He wears a navy blue bow tie and white dress shirt. To the right stands his mother, a woman with light skin and dark brown hair in an up-do, who wears a navy blue, off-the-shoulder gown. She also wears glasses and a wrist corsage of white roses. The party is posed under a trellis arch of white roses and green leaves, with the ocean in the background.]
In the spring of 2010, I headed to the zoo for my son Daniel’s annual school field trip. I loved spending the day with other parents of children with disabilities. The comradery fed my soul. This was the last trip of his elementary school years in our home state of Florida.
Daniel is now a 22-year-old man. He’s a happy guy who loves to drum, swim, and listen to music. He was born in 1998 with a rare genetic disability that affects him physically and intellectually. It wasn’t officially diagnosed until he was 21 years old, thanks to the increased availability of genetic testing. A random deletion on one of Daniel’s calcium channel genes results in a severe seizure disorder and global developmental delay.
After cruising past the giraffes and elephants, we took a break for lunch. Wheelchairs rolled in, some with IV poles attached for midday g-tube feedings. Pureed lunches were pulled from backpacks for those able to eat by mouth. I could relax knowing there were others who understand my struggles as well as my deep love for my son. Among them was the unfamiliar face of a mother and child new to our school.
The new mom had recently moved to Florida from Wisconsin. My first suggestion, as it often is, was to contact the Agency for Persons with Disabilities to enroll in the Home and Community-Based Services (HCBS) Medicaid waiver program. Daniel had been on the waitlist for eight years, one of 20,000 Floridians waiting for services that provide respite, personal care assistance, and help with the extra costs of raising a child with disabilities or caring for an elderly relative. Today, there are 72,000 Floridians on HCBS waiting lists.
“Oh, we’re already on the waiver,” the transplanted Floridian explained.
“What? Daniel was born here, and we’ve been on the waitlist for years. I have written so many letters to my representatives, helped with state-wide petitions, and made more calls than I can count. HOW did you get on the waiver already?”
She looked a little embarrassed. I have her to thank for opening my eyes, though.
“Well, my ex-husband has back problems. Not severe, but bad enough that we were able to get crisis services when we documented his chronic pain,” she told me.
I suffer from back pain due to repetitive lifting of Daniel. My back problems were compounded by a car accident. It turns out that a caregiver’s chronic pain moves a child’s status higher on the waiting list in Florida. So, I filed the appropriate paperwork. Several months later, we had some help.
Why do people with disabilities and their parents have to jump through so many hoops to access the funds that keep them at home and in the community where they thrive? The answer is chronic underfunding, which is why the Better Care Better Jobs Act (BCBJA) is so important. The BCBJA would eliminate state waitlists, increase pay for home care workers, and create good jobs with appropriate training in home health care. In Florida alone, 5,000 new jobs would be created. In addition, 10,100 family caregivers in Florida would be able to return to work themselves.
Once enrolled in Florida’s HCBS system, we could hire personal care attendants to dress and feed Daniel in the morning and get him on his school bus, so that I could be at my job on time. The downside was significant turnover at the agency I used, and his care was not consistent or high quality. I cringe when I remember travelling out of state to be with my mother as she was dying, and Daniel’s assistant left him unattended, resulting in a fall and the loss of a permanent front tooth.
Low pay for home care workers meant I couldn’t always rest easily when Daniel was in their care. In Florida, there’s a consumer-directed option (also known as “self-directed” services) that allows me to hire friends, family, or my own hand-picked assistants. After Daniel’s fall and injury, I moved us into that option.
Florida has a base pay rate of $12 an hour for home health care workers, which is not a living wage. I am able to increase it as our budget allows, but a few dollars more is not enough incentive for the type of caregiver Daniel needs. Plus, increasing hourly pay reduces the number of total hours available to us. As a result, home health care work is not sustainable for those who need employee benefits such as health care and paid time off, a huge barrier to assembling a quality team. I have been lucky to find a few fine people who take good care of my son, but they are the exception, not the rule.
The HCBS programs, nationwide, are in need of crucial improvement. I am pained that so many in my community are still waiting to be added to this critical waiver, or, like me, are having difficulty finding care providers they can trust. There is an urgent need for the Better Care Better Jobs Act to be passed to create jobs, raise wages for direct care workers, and eliminate HCBS waiting lists.
Carolyn Murray is a retired registered nurse currently caring full-time for her son Daniel, who has complex medical needs and disabilities. She is also a writer for professional nursing journals and other publications. Carolyn works closely with her former husband, Tom Murray, to provide a meaningful life for Daniel. Her daughter Melody and son-in-law Andrew live nearby in Jacksonville, Florida.