This post is part of the series 14 Questions, featuring interviews with disability advocates regarding their work and insights into the Complex Rehab Technology (CRT) industry. In our latest post, Numotion Director of Advocacy Strategy, Justin Richardson interviews Don Clayback, Executive Director of the National Coalition for Assistive and Rehab Technology (NCART).

Richardson: You’ve been the Executive Director of the National Coalition for Assistive and Rehab Technology (NCART) since 2009. Tell us about the organization. Why was it formed and what are its goals?

Clayback: NCART’s mission is to protect and promote access to Complex Rehab Technology (CRT) for people with disabilities. We do that by providing education and advocacy on a national and state level and collaborating with other organizations to achieve positive policy and funding changes. NCART was started in 2004 by a small group of providers and manufacturers who recognized that to build a solid future for CRT we needed a separate and distinct industry organization to focus on CRT issues. I was lucky enough to be one of the founding board members. Our membership represents the leading CRT providers and manufacturers in the country. We look to engage the whole CRT community, which includes consumers, caregivers, clinicians, researchers, providers, manufacturers and others.
 
Richardson: As an almost 30-year veteran of our industry, what advancements in policy and reimbursement stand out that have positively affected the population we serve? What changes (or lack thereof) have been negative?

Clayback: With the ongoing challenges, it can be hard to recognize the victories we’ve had over the years. Probably the most significant was getting CRT excluded from the Medicare Competitive Bidding Program. It was in 2008 that we secured federal legislation to exempt CRT Group 3 power wheelchairs and accessories. Then in 2010 we were able to get CMS to keep CRT manual wheelchairs and accessories from being included. Without these two accomplishments, there would have been devastating consequences to consumer access to CRT. Another big win was in 2017, getting CMS to correct a Medicare policy and stop plans to apply Competitive Bidding pricing to CRT power wheelchair accessories. Unfortunately, this change did not extend to CRT manual wheelchair accessories which we are still fighting. We’ve also been able to prevent various harmful Medicare and Medicaid policy changes from being implemented. On the negative side, we still are fighting battles to stop payor changes that take away access. These include things like Medicaid and Managed Care Organization policies that do not recognize the specialized nature of CRT and treat specialized CRT products like standard Durable Medical Equipment (DME). We need to continue the battles and if you’re involved with CRT, you need to be involved in advocacy.
 
Richardson: In most every industry, technology appears to be outpacing the policy in place to both regulate and reimburse those providing that technology. The Complex Rehab Technology industry is no exception. With that said, while we have seen exciting new private pay technologies (such as the TEK RMD and Softwheels) come to market in recent years, reimbursable technology appears to be relatively stale. What would your response be to the notion that decreased reimbursement has stifled innovation and limited choice for CRT consumers?

Clayback: Decreased or uncertain reimbursement has a definite negative impact on new technology and opportunities for CRT consumers. Thankfully some CRT manufacturers continue to invest in research and development. The market reality is to justify investment in developing new products. Manufacturers need to see potential sales revenue to make that investment worthwhile. That also applies to companies just looking to maintain their current product offerings. This is one of the challenges to the CRT community; to educate policy makers and better demonstrate the productivity and cost-saving benefits that can come from advanced technology. Great advancements are possible but there has to be funding and potential sales opportunities to make them a reality. 
 
Richardson: For years, you’ve committed your time to fighting the good fight in an effort to help ensure continued access to CRT. How did you get involved in the world of CRT?

Clayback: My first career was actually as a Certified Public Accountant with a national public accounting firm. While that time was rewarding, the opportunity to manage a family DME/CRT business came up and I decided to take that on. In addition to management responsibilities, I was involved in the evaluation and sale of CRT and got to work with children, adults and families who needed this specialized equipment. It was great to be able to see firsthand the positive changes that CRT can make in someone’s life. In my CRT career I’ve spent time as a provider, industry consultant and advocate. At NCART it’s been great to be able to work with other stakeholders on a national level to educate policy makers and help protect people’s ability to get the CRT they need.
 
Richardson: Arguments in support of continued access to CRT have begun to shift from emotional pleas toward evidence backed, outcome based models. What impact do you believe this will have on the effort to protect access to CRT?

Clayback: While part of the CRT message includes personal stories and individual case studies, today’s world is data driven and we need to have that information to share. Historically, the industry and community have not been able to invest in tracking utilization and outcomes. There now is an increased focus on that need. Investments of time and money are being made to gather information on outcomes and the related benefits that come from the proper provision of CRT. We need to have better data to show improved outcomes, health care cost savings, increases in function and independence and other benefits. While it’s not easy obtaining, it’s become a necessity in the world of health care.
 
Richardson: The CRT clinician’s voice is powerful but is sometimes underrepresented in CRT advocacy efforts. If clinicians are unable to participate in on-site advocacy events for reasons such as employer policies that provide decreased opportunities for employee leave, what can they instead do on personal time that will help support the movement to protect CRT?

Clayback: The clinician voice must be heard and their involvement has been a big part of our successes. While there are real life challenges in finding the time and dollars, thankfully dedicated clinicians are willing to get engaged.  A great example of this is the Clinician Task Force. This national organization consists of physical therapists and occupational therapists from across the country who are involved in the provision of CRT mobility and seating. Even with work place constraints, there are opportunities for all clinicians to be engaged in CRT advocacy at some level. That can range from taking a few minutes to use available tools and send an email or call their Members of Congress to meet in-person with their members in their local offices or in DC. We need to continue to look for ways to make this easier and increase the clinician voice.
 
Richardson: How important is the consumer voice in the process to ensure access to CRT and what advice would you give to manufacturers and providers that could potentially help to instill a sense of empowerment within the consumer?

Clayback: The consumer voice is critical to CRT advocacy and that includes family members and caregivers. Thankfully we have seen an increase in consumer engagement over the years and we are grateful to the national consumer organizations that have taken on CRT access issues as a priority. We have created a dedicated advocacy website at www.access2crt.org solely focused on federal and state CRT issues. It includes educational papers and links to use to email and call related governmental officials. And consumers or other stakeholders can sign up to receive NCART Alerts on access matters that come up. Providers and manufacturers need to proactively inform consumers of the barriers that negatively impact their ability to get the CRT they need and provide guidance on how they can get engaged in eliminating them.
 
Richardson: What do you see as the future of the CRT industry five years from now? 10 years from now?

Clayback: While there are challenges ahead, here are some facts that need to be recognized. CRT brings real value to the people who require it, in terms of increased function, independence, productivity and health management. It also brings real value to the health care system in terms of reducing medical treatments, medical complications, hospitalizations and institutionalizations. The need for CRT and the benefits it brings will only increase and that brings business opportunities. But to ensure a positive future, the CRT community must continue to educate policy makers and provide the evidence supporting these facts. We have made great progress in educating Congress at the federal level and awareness and support has never been higher. Achieving separate and distinct CRT recognition at the federal and state level is a key to obtaining many of the needed improvements. This will support the right coverage and funding policies and allow for continued technological advancements. It will also create a business environment that enables CRT manufacturers and providers to supply quality equipment and services. But for all this to happen we need to increase the investment in advocacy resources and engagement.
 
Richardson: What advice would you give to someone who is participating in an advocacy event for the first time?

Clayback: My first message would be one of thanks. We need more voices from all segments of the CRT community engaged so every new advocate is important. Secondly, as long as you are willing to invest some time you can become a very effective advocate. We have the information and tools to arm you with what you need to know. From there, tell your own story and use polite persistence to secure the support for the change you seek. Everyone has a role to play in building on the growing awareness and momentum around CRT access.
 
Richardson: Bipartisan legislation (H.R. 3730) has been introduced that would stop CMS’s application of Medicare Competitive Bid pricing to accessories used with CRT manual wheelchairs. To many, the word “accessories” brings unnecessary and superficial items to mind. Would you please provide several examples of the accessories affected and explain why the effort to end competitive bid pricing for these items/components is critical to those using CRT manual wheelchairs?

Clayback: Unfortunately, Medicare uses the term “accessories” in its coverage policies which does a real disservice to the critical items that the policies refer to. When it comes to wheelchair policies, “accessories” really refers to the “critical components” of the wheelchair. These are the components that allow the wheelchair to be individually-configured to meet the specific medical and functional needs of the person. Accessories include vital items such as pressure relieving seat and back cushions, positioning devices like adjustable headrests and trunk supports, and power wheelchair components such as specialty drive controls, power tilt and power recline systems. As mentioned earlier, while we have resolved the Medicare policy issue for CRT “power” wheelchair accessories, CMS still has not made a policy correction to eliminate the current disparity that permits lower payments for CRT “manual” wheelchair accessories. This puts CRT manual wheelchair users at a real disadvantage when trying to get the individually configured wheelchair they need.
 
Richardson: Do you believe we will see either a legislative or policy change “win” with H.R. 3730 in the same sense that the efforts of our Congressional champions, NCART and other industry leaders were able to prevent the continued application of Competitive Bid pricing for power wheelchairs? If so, through which channel and how far into the future do you believe that may happen?

Clayback: While it’s hard to make solid predications, I do think we have a very good chance to get a win here. It was unfortunate that the 2017 Medicare policy correction only included CRT power wheelchair accessories but our champions in Congress recognize that the manual accessories problem needs to be solved. We currently have 108 cosponsors on H.R. 3730 and 23 cosponsors on the related Senate bill S. 486. This shows strong bipartisan Congressional support for a fix. Our challenge is getting Congress to make this a priority and get our small bill attached to a larger piece of legislation. This is the year to either get the bill passed or use Congressional pressure to get CMS to make the needed policy correction.
 
Richardson: What other proposed legislation would currently be of interest to the CRT community?

Clayback: Key areas to be monitoring are any discussions under the heading of healthcare reform. Those discussions include negative changes like reductions in the “essential health benefits” package, which is a list of the minimum services and items that must be covered under any health insurance plan, and modifications in how state Medicaid programs are structured and funded. These areas represent major risks for taking away protections and coverage for people with disabilities. Healthcare reform should result in better care and coverage at less overall cost, not less care and coverage.
 
Richardson: Focus is often placed on federal legislation and policy, but important efforts are underway across the country that would protect access to CRT at the state level. In what states have significant protections been accomplished and what can we learn from those states when attempting to ensure access in others?

Clayback: Appropriate CRT coverage and funding at the state Medicaid level is critical to ensuring adequate access. NCART continually works on Medicaid issues and we do this in collaboration with state associations and other stakeholders. Through this collaboration we have gotten CRT related legislation passed in the states of Washington, Colorado, Connecticut, Oklahoma, Illinois and most recently, in Wisconsin. This solves specific state issues and helps establish the separate recognition of CRT at the state level. We see increased advocacy activities ahead in the Medicaid arena, particularly relating to Medicaid Managed Care plans. Continued collaboration with the CRT community will be important.
 
Richardson: What would be the best way(s) for providers, manufacturers, clinicians, consumers, and other CRT stakeholders go to learn more about NCART and support its efforts?

Clayback: We need more people to get engaged in CRT advocacy and get others to do the same. I’d encourage anyone involved with CRT to check out the NCART website at www.ncart.us where they’ll find a variety of educational and advocacy information. I’d recommend people sign up for timely CRT updates on the website so they can stay informed and engaged. In addition, what enables us to lead the CRT advocacy work is the financial support from our membership. So any CRT provider or manufacturer who is not an NCART member, drop me an email at dclayback@ncart.us and I’m happy to call to discuss adding your support to help build on our progress. I’d also encourage consumers and clinicians to do business with our NCART members. These companies are investing their time and dollars to be sure people with disabilities can get the important equipment and supportive services they depend on. Their investment in advocacy should be rewarded.