In April I was invited along with my husband and son to attend the 2015 National CRT (Complex Rehab Technology) Leadership and Advocacy Conference in Washington, D.C.  The University of Michigan’s Wheelchair Seating Service was one of the conference sponsors.  The conference was organized by the National Coalition for Assistive and Rehab Technology (NCART) and the National Registry of Rehabilitation Technology Suppliers (NRRTS.) This conference brought together providers, manufacturers, consumers, and others together to protect and promote access to CRT.  CRT is medically necessary and individually configured wheelchairs, adaptive seating and positioning systems, standers, gait trainers, and other equipment that requires evaluation, configuring, adjustment, training and programming.  My son, Willy, is a long-time patient of Dr. Hurvitz’s and complex rehab technology has, in part, kept him safe and healthy and able to be mobile.  As the insurance codes now stand, access to CRT is very difficult and not guaranteed. Many times a clinician will find a device that will help their patient, only to have their insurance company deny the item. 

CRT includes products that are designed to meet the specific and unique medical and functional needs of an individual with a primary diagnoses resulting from a congenital disorder, progressive or degenerative neuromuscular disease, or from an injury or trauma. In my son’s case, lissencephaly is the primary culprit.  Lissencephaly is a rare, gene-linked brain malformation characterized by the absence of or folds in the cerebral cortex.  This results in, among other things, a shortened life span, seizures, cerebral palsy, cortical vision impairment, and more.  Willy is 11 but we were told he would probably only live to approximately two at his diagnosis when he was four months old.  He does not walk or talk and doesn’t take anything by mouth.  He has seizures which are very difficult to control and is very “floppy” because of his CP. Because of his specialized wheelchair, we have been able to be mobile with Willy and know that he is safely protected. His wheelchair is molded for his body and keeps him straight so that he can get deep breaths.  It has a head rest that protects his head from flopping side to side.  It has a tilt feature so that if he gags or chokes on his saliva or needs pressure relief from sitting in the chair too long, we can change his tilt.  We had to fight for 16 months for our insurance company to approve his wheelchair.  In the meantime, his legs and hips were being squeezed by his old chair. We were homebound because we couldn’t take him anywhere comfortably.  Only after we contacted our state representative and launched a media campaign with NBC news, did our insurance company finally authorize his new chair.  This was 5 years ago and thanks to Chris Savoie with U of M’s Wheelchair Seating, Willy’s chair is kept running with new parts and repairs as needed. 

In establishing CRT necessity, consideration is always given to the person’s immediate and anticipated medical and functional needs.  These needs may include daily living activities, functional mobility, positioning, pressure relief, and communication.  The CRT process is important so the individual can accomplish their daily tasks safely and as independently as possible in all environments.  The provision of CRT is done through an interdisciplinary team consisting of a physician, an occupational and/or physical therapist, and a CRT supplier. Together, the team provides both the clinical and the technology related services. 

Some numbers:  Of all the manual wheelchairs Medicare pays for, 6% are CRT and 94% are standard.  Likewise, 22% of the power wheelchairs Medicare pays for are CRT and 78% are standard.  Complex manual and power wheelchairs are intended for long-term use.  They come with high adjustability, provide positioning, accommodate orthopedic issues, and provide pressure management.  They can come with advanced electronic controls and offer ventilation accommodation.  They are NOT the wheelchairs or “scooters” you see advertised on television. 
 
In comparison, “standard” wheelchairs are intended for short-term use and have zero to minimal adjustability.  They do not provide positioning, orthopedic accommodations, or pressure management.  Think of the wheelchairs that you can borrow at the zoo for your elderly grandmother because she can’t walk that far.  CRT is NOT that.  Willy would fall right out of one of those!
Bottom line is these items are the legs and arms of people with several multiple disabilities and the only way they can maneuver through life.

Our goals at the conference were to make as many Congressional visits as possible.  We ended up lining up around 220 separate visits with representatives and senators from all over the country.   I myself was able to take the lead in two of the meetings and it was a wonderful experience. Willy went into the meetings with us so that we could show the representatives the face of CRT.  Our two “asks” were as follows:
To protect and improve access to CRT by co-sponsoring and passing Separate Benefit Category (SBC) legislation.  Congress must pass this bill to improve coverage, safeguards, and access to CRT.  Access to CRT is threatened because its differences are not recognized.  Changes are needed (coding, coverage, payment) to fully recognize the specialized nature of CRT and the medical and functional needs of the individuals who rely on it. A SBC will improve and protect access within Medicare and then flow to Medicaid and other payers including other insurance policies and the ACA. 

To stop competitive bid pricing to CRT: CMS has announced that effective 1/1/16 it will apply competitive bid pricing which will result in 20-50% reduction in access to CRT for those who desperately need it. This is against congressional intent/legislation and Congress must intervene and get CMS (Center for Medicare Services) to rescind this policy change.  

The details of the legislation are as follows:

  • Creates a separate category for CRT within the Medicare Durable Medical Equipment, Prosthetics, Orthotics, and Supplies (DMEPOS) benefit (similar to O&P.)
  • Recognizes specific codes as CRT and allows creation of new CRT codes as needed
  • Eliminates the in-home restriction for CRT and adds functional considerations
  • Allows nursing home residents to access CRT as part of the move to community residence
  • Expands clinical evaluation for CRT mobility 
  • Increases supplier standards regarding credentialed staff and repair capabilities
  • Exempts remaining CRT from competitive bidding  

The bills in both the Senate and the House were co-sponsored with bi-partisan support.  House Bill HR-1516 was sponsored by Joseph Crowley (D, NY) and James Sensenbrenner (R, WI.)  Senate Bill S-1013 was sponsored by Senator Thad Cochran (R, MS) and Senator Chuck Schumer (D, NY.) We are up to 78 members signed on in the House (30 Republicans and 48 Democrats) and 7 members in the Senate (3 Republicans and 4 Democrats.)  In prior years, the bills had quite a lot more support but new bills are required with each Congressional term.  There is a lot of work to be done to reach the appropriate numbers of representatives!

Our Message to Congress:
CRT is critical to the health and independence of people with complex disabilities
CRT is specialized and individually configured like Orthotics & Prosthetics (custom braces/artificial limbs)
These products and services are very different than standard DME and need segregation
Broad DME policies and codes do not address people with disabilities
H.R. 1516 and the new and yet unnumbered Senate bill must be passed to provide needed distinction and improvements 

Cost of this Legislation:

  • A Washington DC actuarial form (Dobson & DaVanzo) was hired to estimate the cost
  • Congressional estimates are typically made based on a 10-year projection
  • The cost of the bill is estimated at $5 million per year over 10 years. (Pocket Change.)
  • Does not include the impact of savings from improved access to CRT
  • We will need Congressional Budget Office (CBO) to do "official" scoring 

 

CRT Educational Sites
http://www.access2crt.org/
http://www.ncart.us/
http://www.cms.gov/
http://www.nrrts.org/

I was incredibly grateful for the opportunity to attend this conference and make the connections I made. I’ve been working hard on doing follow-up with many Senators and Representatives to make sure they were aware of the issues surrounding what is a small and often marginalized population, yet a population that needs the help the most. CRT is essential in my household and to the mission of the Department of Physical Medicine and Rehabilitation.  It is my desire that our clinicians, together with our rehab engineers and therapists, can help determine the needs of these patients and be confident that the items they prescribe will be approved by the insurance companies without the fight that we have had.

What can you do?
This is a very important question. Most of you thankfully do not have any idea of what goes on in this medically fragile and complex world that we live in.  But we need your help. Please contact your State Senators and ask them to sign onto the Access to Complex Rehab Technology bill that will soon be introduced in the Senate by Senators Schumer and Cochran.  Also, please contact your Representative and ask him/her to sign onto HR 1516 that was a bi-partisan introduction into the House. 

If you want to know if your Representative or Senator has already signed on for support, please go to this site:  http://www.access2crt.org/