Donna Powers’ workday starts early. Her personal care attendant arrives at 3:45 a.m. to help her shower, dress and prepare for her day so she can catch the bus on time. As a STAT advocate at the Arizona Center for Disability Law, Powers uses her training, background and personal experience with disability rights advocacy to help others learn to be their own advocates.
Then, she catches the bus home where another member of her attendant team assists her with meal preparation and other household chores while she rounds out her day.
While this sounds like a typical routine for many of us, Powers accomplishes this with limited mobility, the help of a power wheelchair, and the AHCCCS Freedom to Work program.
“The Freedom to Work program creates the possibility of earning disposable income so we can move up and eventually out of the program entirely.”
Since a car accident 28 years ago, Powers has become an advocate for disability employment rights. As part of a core group of advocates, she helped draft the original idea of the Freedom to Work program, which Governor Hull added to the state’s Medicaid program. “For those of us with significant disabilities, we have significant needs. The Freedom to Work program creates the possibility of earning disposable income so we can move up and eventually out of the program entirely,” she said. “That’s really what the program was intended to do – provide a path to gainful employment.”
Durable medical equipment, not typically covered by employer insurance, is one such need. Her power wheelchair alone can cost as much as $20,000. Add to that upkeep and regular repairs, in addition to specialized therapies, lift devices, and vehicle modifications, and it’s easy to see how having a disability can stretch a budget.
Freedom to Work provides health care coverage for working Arizonans with disabilities who are not otherwise eligible for AHCCCS coverage as a result of their income. Members pay a monthly premium up to $35 per month, based upon their countable earned income. Powers makes the point that because of program she does not collect Social Security or Medicare benefits.
“People with disabilities are valuable and have determination. They want to be out there. They want to participate in the community, whether it’s working, volunteering or just doing the things they like to do. It’s that independent living that Medicaid provides.”
Like all working professionals who balance the demands of a full-time job with the full-time job of parenting two young children, John Beaubien is busy. But he wouldn’t have it any other way.
At age 18, Beaubien learned he had a rare form of muscular dystrophy when he didn’t pass a military enlistment physical. His calf muscles weren’t strong enough to support him. “Back then I didn’t know anyone who had a disability, everyone around me was walking just fine and I just felt so alone and depressed for several years and I didn’t know what I was going to do for the rest of my life or what I could accomplish.”
As the disease progressed in his body, and he came to terms with having a physical disability, he found Ability 360, a center for independent living resources in Phoenix, Arizona. Armed with information and surrounded by supportive people, Beaubien worked with Vocational Rehabilitation Services to help him find a job. With financial support through Social Security Disability Insurance (SSDI), he enrolled in college, earned a bachelor’s degree in graphic design, and landed what he describes as his “dream job”—working for Ability 360. “I realized that having a disability made me work harder to accomplish my goals,” he said.
“AHCCCS Freedom to Work has changed my life. Without it, I wouldn’t be able to work.”
Full-time employment—and being able to support his family without SSDI cash benefits—was always one of his goals. But many people with disabilities fear that additional income will preclude them from Medicaid and Medicare disability healthcare benefits, coverage that helps them live independent and self-directed lives. Through the AHCCCS Freedom to Work program, Beaubien was able to keep health care benefits while earning income. Freedom to Work provides health care coverage for working Arizonans with disabilities who are not otherwise eligible for AHCCCS coverage as a result of their income. Members pay a monthly premium up to $35 per month, based upon their countable earned income. “The AHCCCS Freedom to Work program has changed my life. Without it, I wouldn’t be able to work,” he said. Today, Beaubien no longer receives SSDI cash benefits.
In time, Beaubien’s muscles will become gradually weaker and he will be even more dependent on the mobility tools like his power wheelchair and adapted vehicle. But by then he may be well into his retirement years, reflecting on a long career forged by his own determination, aided by the AHCCCS Freedom to Work program.