Here's How to Become Your Own Best Healthcare Advocate
Shepherd Center experts provide advice for managing health following rehabilitation.
Sean Goral, 22, was just six credits away from earning a bachelor’s degree in biology at Georgia Southern University when he was injured in a car accident.
In what seemed like a flash, his life was forever changed when he sustained a C-5 to -6 spinal cord injury (SCI). Through his recovery, he has quickly learned how important it is to problem solve, speak up and advocate for himself.
But, as Sean knows, the shift to becoming your own best advocate is not always easy.
“Even though patients participate in education and training here at Shepherd Center and are given many resources to access in their own community, it can still be very frightening to leave this cocoon and go home,” said Ginger Martin, M.Ed., CCC-SLP, CCM, manager of Shepherd Center’s Transition Support Program.
It’s often difficult for people who are newly injured to anticipate their life in the future. But worries abound about how to cover medical-related costs. A major challenge is that very few healthcare providers outside of rehabilitation are familiar with spinal cord or brain injury, so patients and their caregivers must quickly become experts on their specific injury and unique needs. This may even mean educating their local healthcare providers, Martin explained.
To ease the transition, Shepherd Center's Transition Support Program staff members work one-on-one with patients like Sean to anticipate the services and therapies that will best meet their long-term needs back home.
“The goal is to help our patients maintain their health once they leave Shepherd Center,” said Darlene Johnson, a transition support coordinator who works with Sean.
The more active patients are in managing their care and tapping into supportive resources, the better. Sean’s team says he has been a shining example of someone who is working hard to adjust to his spinal cord injury – focusing on what he can do versus the limits that have been imposed upon him.
“Some patients continue to wrestle with why their injury occurred and acceptance of such a life-altering change after discharge from the hospital,” Johnson said. “Sean has been able to successfully – with the help of his family – manage his traumatic injury at the same time as moving forward and pursuing resources that can help with his independence and livelihood.”
His efforts are paying off. In 2013, Sean applied for and received two grants – $15,000 from Georgia’s Brain and Spinal Injury Trust Fund and $2,500 from the Center for Financial Independence and Innovation – to put toward an accessible vehicle to accommodate his power wheelchair and facilitate transfers.
“It’s been really liberating,” he said.
An avid surfer and runner, he also applied for a hand cycle and other sports equipment to stay active and build his strength. Sean received a Kelly Brush Foundation Grant for the hand cycle and is expecting the bike to arrive soon.
Of course, it can be a major task to fill out the paperwork, especially if you can’t write because you don’t have the use of your hands. But Sean and his mom say it’s been well worth the effort.
“You are at such a disadvantage just trying to get basic things done, but there are lots of programs available to help people in this situation,” said Sean, who suggests setting aside a day each week to complete paperwork.
Grants cover basic medical equipment up to higher-ticket items, such as down payments for adaptive vehicles and home modifications.
What else can you do to advocate for yourself and stay well? Here are a few tips:
- Know what to reasonably expect. Linking up with a peer can help give a realistic picture of what may happen upon returning home and how to plan ahead.
- Build and rely on your support network. Whether it’s to help lift your spirits on a down day, pitch in with chores and keep up with medical bills or to accompany you to physical therapy or medical appointments, you need trusted people to lean on.
- Identify the right doctors and facilities to continue your care. “You are going to get a cold or a urinary tract infection, and preventive visits are critical,” Martin said. Patients should ideally identify and set up initial appointments with a primary care doctor and any other providers (rehabilitation doctor, pulmonologist, urologist, etc.) before leaving Shepherd Center so there are no gaps in their care.
- Shop around for the pharmacy that best meets your needs. Keep in mind that some deliver.
- Be aware of and understand your rights. Know your rights related to your disability and health insurance, as well as your right to get the best care.
“In a lifetime, our Shepherd graduates will encounter multiple visits for post-traumatic care,” said Susan Bowen, RN, CPHQ, CLNC, CSHA, director of quality/outcomes at Shepherd Center. “It’s extremely important that each person feels comfortable and empowered to ask questions.”
Don’t be shy about making sure providers wash their hands to prevent infections, or inquiring about their expertise or track record in caring for people with your type of injury or for certain procedures, Bowen said. Several resources provide information about hospital performance. The Centers for Medicare and Medicaid Services, the LeapFrog Group and your state hospital association are good places to start.
- Take advantage of My Shepherd Connection and the relationships you’ve made. This website is full of useful information and tools about all aspects of your care and returning to home. Educational “how-to” videos are also available. These cover everything from making safe car transfers and catheterizing yourself to the proper padding and positioning to avoid skin breakdown and much more. “We pride ourselves on remaining a resource no matter where patients discharge to,” Bowen said.
- Find additional resources to help. There are a number of national organizations – for example, the Brain Injury Association of America and National Spinal Cord Injury Association of America – that have local chapters and support services. Other groups may offer free supplies (shower benches, bedside commodes, catheters and wheelchairs.)
- Be persistent. “Don’t take ‘no’ for an answer if it is something you are eligible for,” Martin said. “You may have to apply two or three times.”
- Breathe easy. Patients’ fear and anxiety post-discharge is often what lands them back in the hospital, right behind preventable infections, Bowen noted.
Sean’s mom, Janice, said one of the first steps in advocating for yourself or a loved one is to actually take that first step – no matter how overwhelmed or downtrodden you feel. She moved from California to Atlanta, securing an accessible apartment in midtown Atlanta not far from Shepherd Center.
“When you are first injured, there is a tendency to retreat,” she said. “But if you can push yourself beyond what feels comfortable – perhaps reaching out to someone else with your type of injury – it can make a big difference.”
She attests that just one success can help give the momentum you need. Sean has continued to pursue his dreams, as well. In January 2014, he began researching rehabilitation technologies at Shepherd Center – an intensive curriculum that will allow him to complete his bachelor’s degree. “I’m excited to get back into academia and keep my brain active,” he said.
Written by Amanda Crowe, MA, MPH
Photos by Louie Favorite
Shepherd Center provides world-class clinical care, research, and family support for people experiencing the most complex conditions, including spinal cord and brain injuries, multi-trauma, traumatic amputations, stroke, multiple sclerosis, and pain. An elite center recognized as both Spinal Cord Injury and Traumatic Brain Injury Model Systems, Shepherd Center is ranked by U.S. News as one of the nation’s top hospitals for rehabilitation. Shepherd Center treats thousands of patients annually with unmatched expertise and unwavering compassion to help them begin again.