United Spinal's Key Advocacy Issues

1/14/2017 12:00:00 AM

With the election and intense political year having ended, the SCIACT feels it is very important to help keep members informed. There are some key advocacy issues United Spinal feels are impact-

ing and will impact the spinal cord injury community in the near future. The next selections are issues that United Spinal advocates for at the national level. At the end of each selection are ways you can contact your local representative and discuss these issues. Please take the time to read and contact us if you have any questions or concerns.


Complex rehab technology (CRT) refers to products and services. This includes medically necessary individually configured manual and power wheelchair systems, adaptive seating systems, alternative positioning systems, and other mobility devices that require evalua- tion, fitting, design, adjustment and program- ming. CRT is designed to meet the specific and unique medical and functional needs of an individual with primary diagnoses result- ing from a congenital disorder, progressive or degenerative neuromuscular disease, or from an injury or trauma.

The U.S. Congress has acknowledged that complex rehab power wheelchairs are unique and different from standard durable medical equipment (DME). In 2008, it passed legisla- tion exempting these products from inclusion in Medicare’s new DME competitive acquisi- tion program recognizing that such inclusion would jeopardize access to this technology for individuals with disabilities and chronic medi- cal conditions for whom it is medically neces- sary. However, separate recognition of CRT was not established at that time. The Centers for Medicare and Medicaid Services (CMS) has recognized the unique nature of other unique products and services and has created a separate and distinct classification for orthot- ics and prosthetics (O&P), i.e. custom braces and artificial limbs.


CRT is unique and differs significantly from standard DME in the following ways:

  • CRT is used by individuals with disabilities and chronic conditions who have medical condi- tions significantly different from those expe- rienced by the traditional elderly population in Medicare. This population tends to qualify for Medicare based on their disability and not their age including individuals diagnosed with cerebral palsy, muscular dystrophy, multiple sclerosis, spinal cord injury, amyotrophic lateral sclerosis (Lou Gehrig’s disease), and spina bifida.
  • CRT requires a broader range of services and specialized personnel than those required for standard DME – an interdisciplinary team consisting of, at minimum, a physician, a physical therapist/occupational therapist, and a rehab technology professional (RTP) –cer- tified by the Rehabilitation Engineering and Assistive Technology Society of North America (RESNA). Devices in this category require a technology assessment (review of individual’s medical and functional needs) completed by a certified RTP employed by a CRT company. The CRT company is also required to repair the equipment it provides.
  • This bill requires a home evaluation of the individual’s functional mobility needs to in- clude a technology assessment, measuring, fitting, simulations and trials, a mixing and matching of products from different manu- facturers, significant training and education, refitting and ongoing additional modifications.
  • The Medicare program has established qual- ity standards that all DME companies must meet to qualify for the Medicare program. Under this benefit, additional and more rig- orous quality standards will be in place with which CRT companies must comply including the fact that suppliers must be accredited by an independent accreditation organization demonstrating that they comply with the en- hanced quality standards.
  • Under this bill, CRT would be covered for people transitioning from skilled nursing fa- cilities to the home and community. This bill exempts CRT products from Medicare’s ‘in- the-home’ rule which covers mobility devices only if used inside a person’s home. The exemption rightly allows people to use their mobility devices to remain active members of their community.


Medicare currently does not have unique coverage for the more complex needs of in- dividuals with disabilities and chronic medical conditions that require medically necessary individually configured products and services. We believe the creation of a separate recogni- tion of CRT will result in decreased Medicare expenditures by averting hospitalizations due to conditions such as severe pressure sores and blood clots. In the interest of quality healthcare and optimal functionality for indi- viduals with disabilities and chronic medical conditions, recognition of a separate category for CRT is needed.


Co-sponsor H.R. 1516/S. 1013, Ensuring Ac- cess to Quality Complex Rehabilitation Tech- nology Act of 2015 that will create separate recognition for complex rehab technology. House co-sponsors: Rep. Jim Sensenbrenner (R-5th WI)]/Rep. Joseph Crowley (D-14th NY). Senate sponsors: Sen. Thad Cochran (R- MS)/Sen. Charles Schumer (D-NY).



Catheters are essential prosthetic medical supplies used by individuals living with spi- nal cord injuries and disorders, spina bifida, urinary incontinence, serious bladder impair- ment (neurogenic bladder), and other urinary medical conditions. For example, individuals with a neurogenic bladder have no bladder function control, and these individuals are at extremely high risk for severe infection to both bladder and kidneys. These infections often lead to otherwise avoidable emergency room visits, hospitalization and even death.

Ostomy medical supplies are used by indi- viduals living with colorectal cancer, bladder cancer, Crohn’s disease, ulcerative colitis, birth defects, and other intestinal or urinary medical conditions. People living with an os- tomy have undergone surgery to remove their bladder or part of their bowel which impairs their ability to store and eliminate bodily waste. They have a surgically-created opening (stoma) in their abdomen for the discharge of waste. People use ostomy pouches on a daily basis and often for the rest of their lives to help restore the critical function of storing and removing bodily waste. Ostomy and related medical supplies are also necessary in cases of severe abdominal or pelvic trauma as a result of an accident including those sustained during military service.

A proposal in the President’s FY2017 Budget expands the competitive bidding program to additional categories, including ostomy and urological supplies. This decision will limit ac- cess to prosthetic supplies which need to be clinically prescribed, selected, and/or adjusted and fitted for individuals by specially trained health care professionals based on the unique medical and physical needs of each person

in relation to their disease or condition. The incorrect catheters or ostomy supplies can put individuals at risk of severe skin damage, infection, hospitalization and possibly death. Since ostomy and urological medical supplies restore the lost functions of waste storage and elimination, they are defined in the Social Security Act as prosthetics.

Medicare and other payers need to ensure that individuals have access to the catheters and ostomy supplies prescribed for their use to avoid life-threatening infection and in- creased health care costs. Ostomy and uro- logical products are clinically prescribed by health care professionals and finding the right product to address both clinical and lifestyle needs can take time and requires continual

adjustment over the course of an individual’s life. There are approximately 450,000 people living with an ostomy in the United States and approximately a total of 400,000 people living with a spinal cord injury and with spina bifida in the United States.



Prescribed products such as urological and os- tomy supplies should continue to be excluded from the current competitive bidding program under Medicare for the following reasons:

  1. They are products prescribed by medical professionals to address a Medicare ben- eficiary’s life-sustaining medical needs, not a one-size-fits-all, off-the-shelf, or over-the-counter generic product.
  2. They require continual services from a health care professional for selection, fit- ting, training on use, adjustment, and to mitigate risk associated with health care conditions and clinical complexities that arise.
  3. The wrong prosthetic supply can result in severe skin damage, infection and illness resulting in hospitalization and increased health care costs.
  4. Ostomy and urological prosthetic sup- plies are not used with other durable medical equipment but rather function on their own, replacing a bodily function.
  5. A 2004 evaluation and report by the U.S. Department of Health and Human Services concluded that urological sup- plies were not well-suited for competi- tive bidding because there was insuffi- cient potential for Medicare savings.



Complex rehab wheelchairs and essential components are used by a segment of wheel- chair users with significant disabilities such as ALS, cerebral palsy, multiple sclerosis, mus- cular dystrophy, spinal cord injury and traumatic brain injury. For these wheelchair users, the chair is not complete, usable or even safe without the appropriate complex rehab technology components included. Medicare is planning on implementing a payment policy change on January 1, 2017 which will result in these vital components becoming more dif- ficult to acquire.

This specialized equipment is provided through a clinical team model and requires extensive evaluation, configuration, fitting, adjustment, or programming. These indi- viduals have the highest level of disabilities and require individually configured complex rehab wheelchairs and critical wheelchair components to meet their medical needs and maximize their function and independence.

Complex rehab components are not mere cup-holders or convenience items but includesuch items as seating and positioning systems and specialty wheelchair controls. These are medically necessary and integral to the com- plex rehab wheelchair being functional and useful to an individual living with a significant disability such as SCI in order to maintain their independence and participation in soci- ety.

The current payment policy for complex rehab wheelchair components must be maintained and Medicare’s January 1, 2017 policy change which applies competitive bid pricing for standard wheelchair components to complex rehab wheelchair components must be can- celed based on the following:

  • Complex rehab wheelchair components need additional adjustment and fitting and rely on higher-credentialed technicians for services.
  • Medicare is inappropriately using pricing information obtained through its competi- tive bidding program for standard wheel- chair components and applying that pricing to complex rehab wheelchair accessories that were not part of the competitive bid- ding program.
  • This policy change is in violation of Con- gressional intent when it passed Medicare Improvements for Patients and Providers Act of 2008 (MIPPA) which excluded com- plex rehab power wheelchairs and compo- nents from the competitive bidding pro- gram.
  • This policy change is contrary to Medicare policy after MIPPA which states compo- nents (called accessories by Medicare) on complex rehab manual wheelchairs are paid at established fee schedule amounts.
  • Medicare is using extremely limited infor- mation from a sample size of 174 power wheelchairs in nine cities. Medicare plans to apply this inadequate, 7 year old data to complex rehab wheelchair components used on a national universe of over 15,000 complex rehab power wheelchairs.
  • The negative consequences will spread to include other people with disabilities who are covered by Medicaid and private health insurance plans since many insurance pay- ers follow Medicare policy.


In order to avoid major access problems for people with significant disabilities whom rely on specialized features and accessories, Medi- care must rescind its planned payment policy change regarding critically needed compo- nents used on complex rehab wheelchairs.



Co-sponsor and pass H.R. 3229/S. 2196 to protect access to complex rehab wheelchairs and essential components required by people with disabilities. House sponsors: Rep. Lee Zeldin (R-NY); Senate sponsors: Sen. Rob- ert Casey (D-PA), Sen. Rob Portman (R-OH), Sen. Thad Cochran (R-MS), Sen. Charles Schumer (D-NY)



1 in 6 Americans (approximately 50 million) is living with a neurological disease. According to the National Spinal Cord Injury Statistical Center, 282,000 individuals live with spinal cord injury in the United States with 17,000 new cases each year. However, existing da- tabases and registries collect uncoordinated data on individuals with spinal cord injury and paralysis and the 282,000 number may be low. In 2000, the Pew Environmental Health Commission recommended that neurological diseases be tracked by a national data system –  such a system does not currently exist in the United States. The number of Americans living with neurological diseases continues to grow at significant rates. Consequently, the need has never been greater to track the epidemiology of these diseases and to pro- vide researchers with better data. According to the Society for Neuroscience, disorders of the brain and nervous system result in more hospitalizations than any other disease group, including heart disease and cancer. Addition- ally, the United States spends about $25 million every 30 minutes treating neurological conditions, totaling a staggering $500 billion each year.

Without basic data concerning the size and makeup of people with neurological diseases, researchers are working at a distinct disad- vantage. Additional epidemiological data on the neurological disease populations could lead to new treatment targets, better clini- cal understanding of diseases, and eventually new treatments and cures. The Advancing Research for Neurological Diseases Act will collect this essential data.

The Advancing Research for Neurological Dis- eases Act allows the Secretary of the Depart- ment of Health and Human Services (HHS) to establish a centralized data collection system within the Centers for Disease Control and Prevention (CDC) to collect and aggregate data on the epidemiology of neurological diseases. This data will provide a foundation for evaluating and understanding aspects of neurological diseases, (both CDC and NIH in- clude spinal cord injury/disease SCI/D in their categorization of neurologic diseases including multiple sclerosis, Parkinson’s disease) such as:

  • The natural history of neurological diseases
  • Demographics, such as age, race, ethnicity, sex, geographic location, and family history
  • Geographic clusters of diseases
  • Diagnosis and progression marker
  • Risk factors that may be associated with certain neurological diseases
  • Disease burden
  • Outcomes measures
  • Research for the prevention, detec- tion, management, and development of therapies


The Secretary of the Department of Health and Human Services will have the ultimate discretion to decide what types of data to collect and how it will be collected. Data can be drawn from existing databases, including but not limited to: Medicare, State Medicaid Programs, the Department of Veterans Af- fairs, and State and local registries. This data will be made available to other agencies and researchers.

The bill requires that privacy and security protections are at least as stringent as those required by the Health Insurance Portability and Accountability (HIPAA), de-identifying personal information and eliminating the pos- sibility of privacy breaches.



Co-sponsor S.849, Advancing Research for Neurological Diseases Act of 2015 that would create a centralized data collection system and the Centers for Disease Control and Prevention to track and collect data on the epidemiology of neurological diseases. Lead Senate sponsors: Sen. Johnny Isakson (R-GA) and Sen. Chris Murphy (D-CT).



The National Institutes of Health (NIH) con- ducts and supports approximately $514 million in medical rehabilitation research annually, $70 million of which is supported by the National Center for Medical Rehabilita- tion Research, located in the Eunice Shriver National Institute for Child Health and Hu- man Development. Currently, varied disabil- ity and rehabilitation research occurs across several of the 27 NIH Institutes and Centers with limited coordination or strategic focus at National Institute of Neurological Disorders and Stroke, National Institute of Arthritis and Musculoskeletal and Skin Diseases, the Na- tional Institute of Diabetes and Digestive and Kidney Diseases to name a few.

In March, Senators Mark Kirk (R-Il.), Michael Bennet (D-CO), Congressmen Jim Langevin (D-RI) and Gregg Harper (R-MS) introduced companion bills (S. 800; H.R. 1631) to im- prove, coordinate, and enhance medical reha- bilitation research at the NIH.

The legislation builds upon the conclusions and recommendations of an NIH Blue Rib- bon Panel on Medical Rehabilitation Research which issued a comprehensive report in Janu- ary 2013. The panel concluded that reha- bilitation research is not thriving at NIH and that reforms are needed to assist people with injuries, illnesses, disabilities and chronic con- ditions maximize their health and their ability to function, live independently, and return to work if possible.

This broad range of topics not only includes research efforts to find cures for those of us with neurological disorders and disease, but to enhance the quality of the daily lives of each of us given our current neurological con- ditions.  By applying the latest technologies to our challenges and opportunities including the Internet, universal design and growth in smart applications, existing research holds many concrete promises for the spinal cord injury/disease (SCI/D) population.

United Spinal Association has played a leading role in the dialogue with the NIH to ensure that the medical and rehabilitation needs of individuals with spinal cord injury and other neurologic conditions are understood and in- corporated into NIH research priorities.

This legislation:

  • Focuses on creating greater links within NIH to help coordinate rehabilitation research across Institutes and Centers to streamline rehabilitation research priori- ties and maximize the current federal investment in this area of research.
  • Involves the Office of the NIH Director in coordination activities, raising the stat- ure of rehabilitation science across the NIH’s 27 Institutes and Centers.
  • Calls for a Rehabilitation Research Plan to be updated every five years follow- ing a scientific conference or workshop. The existing research plan has not been updated since 1993.
  • Provides for an annual progress report; ties co-funding of medical rehabilitation research projects to the Research Plan, and includes a definition of medical re- habilitation research to ensure consistent tracking of rehabilitation research across NIH.
  • Is bipartisan, has been fully vetted with NIH officials, and there is continued dia- logues in support of this bill with reha- bilitation research organizations, clinical associations and disability and consumer groups
  • Is expected to have no budgetary impact.



United Spinal Association urges Congress to pass S. 800 / H.R. 1631, Enhancing the Stature and Visibility of Medical Rehabilitation Research at the NIH Act. Senate sponsors: Sen. Mark Kirk (R-IL) and Sen. Michael Ben- net (D-CO). House sponsors: Rep. James Langevin (D-RI 2nd) and Rep. Gregg Harper (R-MS 3rd).



Over one quarter-century after the signing of the Americans with Disabilities Act (ADA), un- wanted institutionalization remains a serious problem for people with disabilities. The civil right of people with disabilities to live in the community is imperiled by the lack of commu- nity based Long Term Services and Supports (LTSS). With people with disabilities being forced to reside in disability-specific settings, people with disabilities are denied civil rights. The Disability Integration Act (S.2427) (DIA) addresses this serious problem by specifying in Federal Statute that people with disabili- ties have a federally protected right to a real choice in how and where they receive such services.

DIA supports the civil right of people with disabilities to live in the community in the following ways:


  • Specifying in both general and specific terms that discrimination which has the effect of denying people with disabilities a real choice in how they receive services and supports is against the law
  • Assuring that states and LTSS insurance providers deliver services and supports  in a manner that allows individuals with disabilities to live in the most integrated setting, have maximum control over their services and supports, and lead an inde- pendent life
  • Establishing a comprehensive planning requirement that includes enforceable benchmarks
  • Requiring public entities to address the need for affordable, accessible, integrat- ed housing that is independent of service delivery
  • Establishing stronger, targeted enforce- ment mechanisms.


DIA’s definition of discrimination is modeled on Title III of the ADA:

“No public entity or LTSS insurance provider shall deny an individual with an LTSS disabil- ity who is eligible for institutional placement, or otherwise discriminate against that indi- vidual in the provision of, community-based long-term services and supports that enable the individual to live in the community and lead an independent life.”

DIA requires that regulations from Depart- ment of Justice and Department of Health and Human Services be released within one year after the legislation is signed into law. It then requires that all public entities and LTSS in- surance providers complete a self-evaluation within six months after the regulations are released.

Within one year of the regulations being released, state and local governments must submit a transition plan to address the issues identified in the self-evaluation and achieve the purpose of this legislation. Every plan must address these issues as soon as practi- cable, but public entities have up to 10 years to complete the plan. The legislation also cre- ates new targeted enforcement mechanisms to ensure timely development and implemen- tation of these transition plans.

This bill prohibits states or local governments that provide institutional placements for individuals with disabilities who need long- term assistance with daily living activities or health-related tasks, and prohibits insurance providers that fund such long-term services, from denying community-based services that would enable such individuals, as an alterna- tive to institutionalization, to live in the com- munity and lead an independent life.

DIA will ensure that people with spinal cord injuries and other conditions are able to exer- cise real choice in where they wish to receive attendant services, assistance with health related tasks or other services that enable a person with a disability to live in the commu- nity and lead an independent life.



Co-sponsor S.2427 Disability Integration Act of 2015 that creates the right of all people with disabilities to live in the community and supports the integration, equality, and civil rights of people with disabilities. Senate spon- sors: Sen. Charles Schumer (D-NY).

We hope you have found the last 6 sections informative. It’s time for you to advocate for yourself and the spinal cord injury community. Please consider contacting your local representative and voicing your opinion regarding the proposed legislation.

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The Mission of the Connecticut Spinal Cord Injury Association (SCIACT), a chapter of United Spinal Association, is to support those with spinal related injuries or diseases and their families by being an advocate for their rights while serving as a resource to its members and the general public.

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