Miriam* stopped using her cane. It was beat up, falling apart and wasn’t helping her manage her Parkinson’s disease (PD) symptoms. Medicare told her she had to wait to qualify for a new one.
One day when she was cooking she lost her footing and dropped an entire pot of boiling water all over herself. After she was treated for severe burns, she went to the Duke University Medical Center hoping to get a prescription for a new walker, but insurance still wouldn’t help cover the cost. Luckily for her, the local Parkinson’s Foundation Center of Excellence was able to help.
Through a Parkinson’s Foundation grant, the Duke University Medical Center operates the Durable Medical Equipment (DME) program to help people with Parkinson’s like Miriam mitigate the burden of health care costs when it comes to critical medical equipment.
Through the DME program, Miriam received a walker, at no cost."All I can say is that it's a great program," Miriam said. “Miriam is a perfect example of how we hope to help folks through this program,” said Allison Marie Allen, MSW, LCSW, center coordinator and clinical social worker.
The center’s social workers — Allison and her colleague Katie Durham, LCSW, started the DME program because they saw a trend in patients like Miriam, who were not using prescribed medical equipment because of the five-year limitation Medicare puts on patients. “Every penny of this program is funded by the Parkinson’s Foundation Center of Excellence grant,” Katie said.
The goal of the program is to ease the burden of health care cost. While most Duke University Medical Center patients are insured, some are not and many have to follow strict Medicare limitations. “Just because patients have insurance doesn’t mean that all related expenses to accessing quality care are easily managed,” Allison said.
How does the program work?
- A patient makes an appointment at the center to seek treatment for Parkinson’s.
- They see the neurologist, followed by the in-house physical therapist, occupational therapist and speech therapist for an overall evaluation.
- A social worker then speaks to the patient about their home-life and support system, identifying risk factors.
- The interdisciplinary care team meets to discuss the patient’s treatment, identifying and addressing all needs. If there is a medical equipment need, the team will decide if the patient qualifies for the DME closet program.
- The patient goes home with their new medical equipment the same day as their appointment.
“It’s always been vital that we identify risk factors and come together as a care team to help every patient,” Katie said. “The DME program allows us to do more. We want to help all our patients manage their symptoms to the best of our ability.”
Patients visit Duke from all parts of North Carolina, which has a large rural population that may not always have access to a specialized medical equipment store. Parkinson’s is a unique disease when it comes to medical equipment because as new symptoms develop, medical equipment needs to evolve as well. Insurance doesn’t always cover those changing needs as fast as they develop.
As social workers, Allison and Katie are hyperaware that a patient’s hassle doesn’t end with a prescription for a walker. Sometimes, it can be the beginning of a new struggle. “We were speaking to many patients who would leave their appointment with a new treatment plan or recommendation for medical equipment and when they returned six months later none of those changes had occurred. In some cases, we were seeing patients regress,” Katie said.
Following its January 2017 launch, the DME program is still revving up. Allison and Katie meticulously designed the program after they identified the need. They worked with the center’s physical, occupational and speech therapists to establish a list of equipment most frequently recommended to people with Parkinson’s. After receiving funds from the Parkinson’s Foundation, they then spoke with various medical equipment companies about the program, some of which sold them the equipment at a discount.
“So far, this new program is incredibly meaningful to patients and their families,” Allison said. “Through the DME closet, I think patients really see us as more of a partner alongside them in this fight.” The program is not advertised and patients cannot apply to it. The care team determines which patients are eligible.
Cynthia’s* family drove two hours to accompany her to her center visit. Because they lived so far away, they made all her appointments for the same day. They were at the center for hours. As social workers, Katie and Allison’s job is to get to know each patient and their individualized needs.
When they met Cynthia, they found out that she needed a laser for her walker to help with her freezing episodes, but she couldn’t afford one and insurance didn’t cover it. “When we learned that her town didn’t even have a specialized medical equipment store, we came together as a team and decided to provide her with the laser,” Allison said.
“It was an indescribable feeling when we told the family we were going to give Cynthia the laser,” Katie added. The family told them that the drive was more than worth it.
“When we can help families and patients through the new DME program, we find that they are beyond gracious and it’s not just because you’re giving away a piece of equipment, but because they get a sense that you are really caring for them and that you hear them,” Allison said.
*name changed due to patient confidentiality.
For more information about programs offered at this Parkinson's Foundation Center of Excellence, or to find a Center of Excellence near you, call our toll-free Helpline at 1-800-4PD-INFO (473-4636) or email firstname.lastname@example.org.