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Personal care assistants help ensure independence

Robert Fayz
Michigan man’s story illustrates the importance government-funded assistants can play in the lives of individuals with disability, and how difficult it can be to navigate government services.

It was a cold day in December 2012 when Robert Fayz received communication in the mail that would upend his life for close to a month. He would be the subject of a Social Security Administration audit to determine if he qualified for Medicaid assistance for personal care assistants.

The assistants – called PCAs – were a lifeline for Robert, a 36-year-old software developer who lives in Ann Arbor, Mich. The funding for that lifeline – if it were cut off – would imperil Robert’s ability to live independently. The cut would bring into question whether Robert, who graduated from the University of Michigan-Dearborn with a degree in computer science in 2004, would be able to maintain his position at Thomson Reuters, where he has worked for eight years.

“The Medicaid funding was going to pay for my PCAs; the audit occurred because I was working,” he said. “I called DHS (Michigan Department of Human Services), and I guess I just assumed that the Medicaid would stay active until my appeal was over.”

That, however, is not what occurred. Robert – who uses a wheelchair exclusively and counts on his PCAs to help him up, shower, and ready for work – was left without PCA-provided assistance. His mother, Kathryn, took over helping him get ready for work and get into bed at night, but it’s not a situation that can be sustained.

“I had a service come in that used to help me,” he said. “They also had to close because they had problems getting paid by Medicaid – so there have been a lot of problems lately.”

Robert’s situation is one that many people with Cerebral Palsy face, especially if they are employed. Because they earn income, they sometimes have difficulty retaining assistance from Medicaid. However, most people with Cerebral Palsy who work don’t make enough income to pay PCAs out of pocket. This creates a situation where people are forced to make a tough choice – take a job and incur the financially back-breaking cost of assistance, or stay home and be isolated and on Medicaid.

“This was extremely frustrating for the month that I went through this,” said Robert. “My co-workers were supportive, and I had support at home. The PCAs would cost $18,000 if I didn’t have help.

“I couldn’t help but feel I was being punished,” he said. “It felt like I was going through this simply because I had the gall to want to work and live independently.”

The need for PCAs

Personal care assistants work as individuals, or part of a group, to help individuals with special needs. They also assist the elderly, the injured, or the temporarily impaired. Whether they come from an organization or work for themselves, they make it possible for people that have a physical impairment or temporary setbacks to maintain their lifestyle and participate in activities.

PCAs help individuals with personal hygiene, exercise, communication, errands and tasks. People may avail themselves of PCA services while they are in a medical setting such as a hospital or nursing home, or in a residential setting like assisted living facilities or a private home – wherever medical, therapeutic or rehabilitation needs exist.

The qualifications for PCAs vary widely, but generally, PCAs do not require certification or advanced studies to work in the field. The main qualities that are needed include physical strength, patience, compassion and communication skills. They do not provide 24-hour care, and are typically employed when they are needed – such as the morning to help people get up and eat breakfast, or a night to help a person settle in.

Still, many PCAs do seek training like that offered through the National Association for Home Care and Hospice, which trains and certifies individuals to work in the field. The programs are comprised of more than 40 hours of training; subjects that are studied include anatomy, blood pressure and temperature, emergency response and CPR, and heart rate monitoring. However, PCAs are not trained in how to practice medicine, they would need the assistance of a physician or nurse if a person in their care had a medical issue.

They can be paid for using personal monies, but more often than not, they are paid for using Medicaid dollars. In some cases, they are paid through health insurance coverage.

For people like Robert, who has spastic Cerebral Palsy and uses a wheelchair exclusively, the help of a PCA is essential even though he has the use of his upper body.

“They’re a big help,” he said. “They’ve made it possible for me to have a life outside of my home and to enjoy going to school and having a career. It was really depressing to realize that I could lose what I worked so hard for.”

The value of persistence

After Robert lost his PCA funding, he became depressed and panicked. He started looking for resources and information to maintain the assistance of his PCAs. The first thing he did was file an appeal with the State of Michigan, the second thing he did was research online.

“I basically just looked for all of the information I could find online,” he said. “I talked to people who were having the same issues, and I talked to several attorneys.”

Eventually, Robert contacted his state representative, Jeffrey Irwin, who was able to do some research of his own. Irwin contacted a person within Human Services that disclosed to him that Section 1619(B) of the Social Security Act protects the right of people with severe disabilities from losing access to funding for PCAs if they work under a certain set of criteria. To learn more about this criteria, visit Section 1619(B) of the Social Security Act.

Robert met that criteria, and on March 1, 2013, his PCA funding was restored.

“I was really happy and relieved,” he said. “I was just happy knowing that I won’t have to quit my job. And, that I won’t have to live in poverty.”

Robert and his mother know something about tight finances; Robert said his single mother always struggled to make ends meet, and that he went to school to become a computer software developer because he was interested in computers, and he wanted to avoid some of the struggles that his mother faced.

It makes Robert angry knowing that such a valuable service could have so easily been taken away from him.

“I don’t think a person should get the services paid for if they are Donald Trump, but I’m not rich,” he said. “But I work and contribute to society, and when this kind of thing occurs it tells me that my contribution isn’t important. It affects how we see ourselves.”

It also bothers Robert that before calling Irwin, no one he spoke with seemed to be familiar with the provision in the Social Security law that would have prevented the cut-off.

“How many people go through life without knowing that?” he asked.

For now, Robert’s mother continues to help him until March 1. And, he said he’s thrilled to go back to a job he enjoys.

“I’m glad this is resolved,” he said.

Adults with Cerebral Palsy

adult woman in wheelchair by lake

As we grow and mature into adulthood we’re bound to have goals that may not seem to be attainable, or dreams we hope come true. While goals and dreams can be grandiose or simple depending on an individual’s personality and temperament, Cerebral Palsy is not an impediment to an exciting, and ultimately rewarding, life.