AAHD completed six interviews, which you can check out on our Facebook or YouTube pages, in the spring to highlight the benefits of getting the most out of health insurance coverage for people with disabilities. These interviews shed light on the positive impact that access to health insurance has, as well as how to best use coverage. Our topics were rehabilitation/habilitation, mental health, medical devices, access to specialists, and prescription drugs. Most interviews showed the impact that COVID-19 has had on health coverage through telehealth and extended enrollment periods, tips and tricks on how to get services and medications covered, and self-advocacy in healthcare. Learn more about the highlights from each video in the series below.
Rehabilitation/Habilitation – Chase Bearden
Chase Bearden is the Deputy Executive Director of the Coalition of Texans with Disabilities (CTD) as well as the Director of Policy and Advocacy for the Texas Patients First Foundation, with aims to promote the full inclusion and participation of Texans with disabilities in community life.
Chase noted how “when you live with a disability you always know there’s going to be something big happen in the next few years. You know, there’s never a never a 10-year period where you don’t go without having to visit a hospital,” making him passionate about helping people with disabilities and their health insurance coverage.
Chase’s advice on rehabilitation and habilitation services were to practice self-advocacy, people with disabilities should not “be afraid to challenge it. Talk to your doctor, see if they’ll write that justification, ask if you can participate in writing, that justification it may take a while for you get the equipment you need but you can fight for it and you can argue for it.”
Mental Health – Andrea Ellis
Andrea Ellis is a student at the University of Houston studying political science and works with the Young Advocates Program, a national organization dedicated to mobilizing young adults in higher education, health care, and employment. Andrea has used many mental health services from therapists to prescription drugs for her mental health via her Marketplace plan.
Andrea stated that “I believe that access to healthcare is a human right, not just an American one. I rely on health insurance for access to mental health and preventative care services such as therapy, prescription drugs, and regular checkups.”
As many Americans have experienced with COVID-19, telehealth has become more common, offering a great advantage to people with disabilities. Andrea said that “it’s very useful specifically when you’re dealing with something as hard as depression and anxiety.”
Andrea described the process in which she was able to use healthcare.gov to find an affordable plan and providers, “Go on marketplace look to see if you qualify for the credit to be able to pay less, because it’s very beneficial. There’s a lot of things that are available to you if you have insurance.”
Medical Devices Part 1 – Karl Cooper
Karl Cooper is the Director of Public Health Programs at the American Association on Health. Karl has a mobility disability due to a rare blood condition that requires him to use a power wheelchair, giving him ample experience in the navigation on medical devices.
Despite Karl knowing the ins and outs of health insurance, he still had to wait quite some time before getting a new wheelchair, saying that “with COVID-19, there was a lot of delays with materials and parts and shipping, so it took about six and a half months from beginning to end.”
To mitigate this long process that can be filled with delays, Karl noted that “you just sort of have to be a self-advocate on some of these things too and just stay on top of folks. You are your biggest advocate.”
Karl also referred to how expensive DMEs can be and gave advice on using a flex spending account by saying “to put more money into the flex spend account this year so we were going to able to cover those costs and get the tax benefits for that.”
Medical Devices Part 2 – Renee Lopez
Renee Lopez is on the Advisory Board for SAFE Disability Services, board member for the VERA Institute of Justice on Ending Violence Against People with Disabilities, ADAPT of Texas, and Accessible Housing Austin! (AHA!). Renee has arthrogryposis multiplex congenita, requiring her to use a motorized wheelchair along with leg braces.
Before Renee retired, she was able to work with a vocational rehabilitation program to keep her payments low, “When I was working, I didn’t have Medicare and the insurance only paid 80 percent – my state insurance that is. So, the 20 percent was still really, really high but because I was working I was able to go through the Texas Workforce Commission and they would pay that 20 percent to keep me working.”
In terms of payments, Renee said that “I’m retired and so luckily right now, Medicare pays 100% of it” and that people with disabilities should check out vocational rehabilitation programs in order to pay a lower copay, as she said, “don’t let that intimidate you from getting the wheelchair you need.”
Access to Specialists – Karen Kushnyr
Karen Kushnyr is an adult living with Spina Bifida in New Mexico, working for over 25 years in healthcare, primarily as a Healthcare Administrator. Karen uses a service dog for mobility and special assistive technology. Karen highlighted the importance of access to specialists, as she uses a neurologist, an orthopedist, a urologist, and a nephrologist for her disability.
In Karen’s work as a healthcare administrator, she was able to find ways to make the Affordable Care Act cover specialist procedures for patients that she worked with in a dental practice. “A baby who was born with a hole in their upper palate and needed an obturator, we had a specialist who could make that, who could fit that, and so that’s not traditional dentistry. I learned that you can really challenge the medical insurance companies with the information.”
Karen’s advice to those who have a disability and are seeking specialist care is to “call the practice, ask to speak to the practice manager, explain that this is the problem you’re having, and how can they help you get the care that you need, and nine times out of ten they will find a workaround.”
Prescription Drugs – April Flowers
April Flowers is a Benefit Administrator and Marketing Director at Lone Star Citrus Growers in Texas and a and mother to a 17-year-old with intractable epilepsy and mitochondrial disease, for which she is a Champion for the Epilepsy Foundation of America’s Teens Speak Up. Due to this, her daughter requires many prescription medications through her insurance.
April’s advice on how to manage many prescription drugs and their coverage is to make sure “if you are on an employer-sponsored plan, go to your HR department and ask, “Does our insurance broker have a team that can help me navigate this?” and they’ll help you with everything from your EOB doesn’t make sense/you aren’t billed properly to ‘Oh my gosh, I can’t get my medicine.’”
April also noted the importance of having a relationship with your pharmacist so that they are aware of your situation and potential urgencies to get medications, as she says, “If you can build that personal relationship, it really can pay off in spades later on when just that bizarre fluky thing happens.”
Each of these interviews touched on how to use healthcare.gov, what plans work best depending on the situation, creating realistic timelines, and the importance of self-advocacy. Each interview also noted how COVID-19 greatly changed the way healthcare affects people with disabilities in America using telehealth. Interviewees also mentioned strategic ways in which they used deductibles and spending plans to keep copays and out of pocket spending down.
