How you can self-advocate with videos & People for Quality Care

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10/04/2017
By Kelly Turner and Lisa Wells

Editor’s note: Kelly and Lisa wrote this for end users. As HME providers, this is a great tool that you can use to inform your patients and customers to advocate for themselves and, in turn, your businesses.

Imagine this: your HME company has closed, is no longer taking Medicare patients, is asking you to pay up front because they no longer “take assignment,” or you’re having fewer product options or are waiting longer for deliveries and service. You’ve called Medicare and/or Medicaid and gotten the runaround.

So, what’s your next step?

Why disability and senior advocacy is needed

Many HME companies that once have provided services and equipment to people with disabilities have gone out of business because of changing federal Medicare regulations. Poor policies with inadequate funding for HME have caused more than 40% of these traditional HME companies to go out of business or stop accepting Medicare entirely.

Others have had to significantly change the way they do business, due to the unsustainably low rates Medicare reimburses them. In many cases, these companies can no longer provide the same services and equipment as they did in the past or are having to turn to the individual who needs medical equipment to cover the differences in the cost of the equipment and the low amount that Medicare will pay.

Across the nation, this is causing decreased access for medically necessary equipment and services for people who need them, or forcing the individual to pay out of pocket to get what he or she needs, instead of being able to use their Medicare benefit.

Kelly Turner at People for Quality Care says, “With no other recourse, the individual has to go without or spend more of his or her own money, which they may or may not have, to get what they need. Often the person has to make a decision, ‘Am I going to continue to try and find someone to help me, or am I going to give up and not get the service or equipment I was told I would receive from Medicare?’”

These unintended consequences have a significant impact on overall health care and spending, as home care is a cost-effective and preferred alternative for most individuals.

How you can self-advocate for your health care using videos

The viral power of video is staggering. How many videos have you seen on social media that have opened your eyes about people with disabilities? In this video, produced by Cure Medical, My ThisAbled Life’s Andrew Angulo shares his take on the value of selfie videos, in terms of how your personal story can change lives, laws and perceptions: http://bit.ly/2h01YCe.

Andrew says, "I'm just someone who experienced a life altering accident in June of 2009 and I want to share the experience of my everyday situations through silly shorts of my daily life as a photographer, film maker, action superhero and a regular Joe. In a chair. Doing stuff."

People love what Andrew shares! More than 450,000 people have watched his videos on Youtube, and the number keeps growing every day.

Lights, camera, action! Share your own story

Not sure how to begin? Or what you should say when it comes to talking about your own personal experience?

Don't worry, you don't have to be a pro! Simply use your cell phone to create a quick video that talks about your healthcare concerns and why your friends and family should support you in asking for better access to Medicare benefits for people with disabilities.

Your video doesn't have to be long. It doesn't have to be complicated or professionally produced. It just has to be honest, from your point of view, to capture the hearts and minds of people in your community.

Take a look at this one, for example, filmed on the fly and on-the-go by the Rollettes, sharing their experience with United Spinal's Roll on Capitol Hill: http://bit.ly/2v5kLSU

How PFQC can help

PFQC believes in the power of one. Each person has a voice, and when those voices come together to educate legislators about their problems accessing HME, the wheels start rolling, and change can take place. Kelly says the first step in evoking change is, “To put the individuals having problems with obtaining the proper medical equipment, supplies and services directly in touch with their legislators in Washington.”

PFQC encourages people to reach out to their legislators not only through emails, but also through phone calls, Twitter, Facebook and all the vehicles available to them to let those they’ve elected know the problems they’re having receiving the products and services that Medicare is supposed to be providing for beneficiaries.

“Our key initiative at PFQC is to make sure that beneficiaries who aren’t having access to home medical equipment and services get connected to their legislators,” Kelly says. “They can explain to those legislators on a personal level what their issues are and ask their legislators to help fight for changes that will protect access to the HME benefit by providing sustainable reimbursement rates and ensuring that there are enough providers to serve the population of Medicare beneficiaries.”

So, if the disability community doesn’t make Congress aware of problems, then the men and women in Washington can’t and won’t address these issues.

Hint, hint: This is why we're encouraging you to share your own story online with a personal video!

Kelly Turner is the executive director of People for Quality Care. She can be reached at kelly.turner@vgm.com.

Lisa Wells is the vice president of marketing for Cure Medical. She can be reached at lwells@curemedical.com.