Giving Good Days Summer Newsletter- 2020
Meet Matt and His Family
A Growing Family Finds Good Days Ahead
Matt and Bethany Plummer were elated when they found out they were expecting last summer. After meeting in the theater department at graduate school, they had been married for five years and this was going to be their first child.
As they prepared to become parents, the unique challenges that lie ahead became clearer. Matt, who has Spinal Muscular Atrophy (SMA) and uses an electric wheelchair for safety and accessibility, needed help to get to and from regular medical treatment appointments that were essential to his quality of life.
Bethany, a middle school teacher, wished to take Matt to his treatments, but also needed to be in the classroom for her students. Finding reliable transportation on a regular basis that could accommodate Matt’s chair proved difficult and costly. With a newborn coming, it would be unrealistic to always rely on Bethany to drive him.
“We were looking for ways to circumvent this transportation challenge that would give my wife the opportunity to continue to work and save up her leave time for the baby,” says Matt, who works remotely as a Graphic and Web Design Specialist for Odessa College in Texas.
After some research, Matt found that Good Days offered programs for individuals with SMA that included transportation assistance. Shortly after, Matt was speaking on the phone with our Care Navigators who would help him find a local company with chair accessible vehicles that could provide regular rides to and from his treatment appointments.
“These are services that people don’t necessarily think of,” says Matt. “Good Days has been incredibly helpful financially and personally. Honestly, it was one of the smoothest processes I have ever been through. They helped me to review the eligibility requirements and I was quickly filling out the forms online. Within a few weeks we were set up and ready to go with a local transportation service.”
This past February, Matt and Bethany welcomed their daughter Charlotte into the world. With all focus on the baby, the new parents find comfort knowing that everything is taken care of when it comes to getting Matt safely to and from is appointments.
“The transportation is safe, easy and accessible,” says Matt. “Those mornings when I wake up for treatment the stress is not there because we know I have Good Days on my side.”
This year Matt gave back to the Good Days team by hosting virtual workshops with our Care Navigators so that they can better understand the needs of someone diagnosed with SMA for their work with future grant recipients.
“It’s helpful to see people like me who are working full time, at the same time expecting a child and trying to live my life as normal as possible but still need some assistance,” says Matt. “My hope was to share there are different level of needs of each person, no matter the diagnosis. For me it was accessible transportation. That Good Days acknowledged that is incredible.”
CHRONIC DISEASE DAY 2020
CARE. COMMIT. CONNECT.
Next month governors and mayors across the country will proclaim July 10 as Chronic Disease Day and join Good Days and our partners in patient advocacy to build a healthier future.
This year Chronic Disease Day takes on new meaning. The coronavirus pandemic has had an outsized impact on individuals who suffer from chronic illness, including many preventable conditions such as cardiovascular disease and diabetes.
Chronic diseases account for seven of the top causes of death in the United States. Six in ten adults have at least one chronic disease and four in 10 adults have two or more. Together we can lower the number.
Download the MyFitnessPal app on your smartphone and join the Chronic Disease Day 2020 group to participate in our weekly lifestyle tips and challenges to improve your health now.
Visit ChronicDiseaseDay.org to learn more.
HANNAH OLSON, CHRONICALLY CAPABLE
According to the Bureau for Labor Statistics, the unemployment rate for disabled and chronically ill persons is more than double that of non-disabled individuals. This disparity became all too real for Hannah Olson in 2017, when she had to leave her dream job due to an aggressive treatment schedule for Lyme disease that required her to be on an IV for up to six hours per day. Although Hannah’s ambition and intellect were intact, the physical demands of a traditional workplace environment could not co-exist with her life-saving treatment.
While living in Washington, D.C., Hannah met a group of developers working on products to support telework and remote jobs. They decided to team up and create Chronically Capable, an employment platform that connects professionals who have chronic illness to companies looking to hire a digital workforce. Their goal is to ensure no one ever has to decide between their health and work ambitions again.
“Many companies are not currently taking advantage of the benefits of hiring chronically ill individuals who can work efficiently at home, as employers are concerned about the costs of accommodating them, when in reality, these are minimal and fruitful investments,” says Hannah. “As we make more companies aware of the potential gains and elevate their success stories, we will get more individuals with illnesses and disabilities into the workplace, where they can thrive.”
Now that COVID-19 has struck America, business across the nation are for the first time beginning to fully incorporate remote work solutions for their everyday operations. Despite the challenges, Hannah sees opportunity ahead.
“My hope is that employers will see that if they are able to accommodate ‘healthy’ employees during a global health emergency, they are more than able to offer remote work schedules for chronically ill individuals 365 days a year,” says Hannah. “Five years from now, we hope to have eliminated the unemployment gap between chronically ill and non-ill Americans, giving these individuals a sense of purpose, financial independence and security.”
Visit WeAreCapable.com to find work-from-home opportunities that fit your lifestyle needs or to post remote job opportunities for your company.
A MESSAGE FROM THE PRESIDENT
From everyone at Good Days, we hope you and your loved ones are doing well and staying safe.
The ongoing challenges that patients and their families face in the wake of the COVID-19 pandemic are unprecedented. Times like these remind us of the value of family, community and helping one another. It is also a stark reminder of the importance of access to care and the risks associated with chronic and rare disease.
COVID-19 has impacted all of us and continues to threaten our physical health and economic wellbeing. Nevertheless, it is people who suffer from chronic and rare conditions that have been hit hardest by this pandemic. People with underlying conditions are more likely to have their health severely impacted by coronavirus. A recent Centers for Disease Control and Prevention study found that nearly 80 percent of people admitted to an intensive-care unit for COVID-19 had at least one underlying health condition.
In the wake of the coronavirus outbreak, our programs are needed more than ever before. With high unemployment rates, hundreds of thousands of people are making the choice to forgo their treatments so that their families can afford food and other household necessities.
Good Days has had to adapt its operations in the face of the coronavirus pandemic, but we have remained as connected with those we serve as we have ever been. In response to the pandemic, Good Days has established a COVID-19 relief program that supports at-risk patients in affording critical supplies and expenses following this crisis. Our emergency relief program provides eligible recipients with funds for non-medical daily necessities like rent, utilities, groceries and delivery services.
Our Care Navigators have been live chatting on our website to answer your questions in real time as we continue to provide our full support. We have also streamlined our patient reimbursement process with a new mobile app to submit expense requests and upload receipts with greater convenience.
Now more than ever, we thank you for your support. Stay safe and best wishes to you and your loved ones during these challenging times.
Clorinda Walley, President