Adequate Access to Complex Rehab Technology

Earlier this year, the National MS Society participated in a national call-in day in support of HR 942, a bill that would make Complex Rehab Technology a separate benefit under Medicare. As it stands, Complex Rehab Technology falls under the Medicare category of durable medical equipment (DME) which was created over forty years ago to address the need of elderly individuals.

Durable medical equipment is equipment appropriate for use in the home which is built to withstand repeated use and is not typically useful to a person in the absence of illness or injury. Some examples include canes, crutches, and hospital beds.

Complex Rehab Technology (CRT) is defined as medically necessary, individually configured devices that require evaluation, fitting, configuration, adjustment or programming to meet the needs of individuals with a primary diagnoses resulting from a congenital disorder, progressive or degenerative neuromuscular disease, or from an injury or trauma. Common examples include wheelchairs, power wheelchair systems, adaptive seating and other mobility devices.

HR 942 - Cosponsored by Joe Crowley (D-NY) and Congressman Jim Sensenbrenner (R-WI) - would provide adequate access and supporting services for individuals who require CRT devices. The bill would establish conditions for coverage that ensure CRT items are being prescribed appropriately. CRT would be exempt from the “in-the-home” restriction placed on durable medical equipment. Quality standards for suppliers of CRT items would be increased above current DME standards. Suppliers would have to be accredited by an independent organization and maintain the resources and staff to provide appropriate customization of CRT.

The bill currently has 87 cosponsors in the house and has been referred to committee. Over 40 consumer and clinical organizations including the NMSS support HR 942.

August Recess with Rep. Foxx

Each year during Congress’ August recess, MS Activists are asked to meet locally with their member of Congress.  MS Activist Irene Burton shares her recent experience visiting with US Rep. Virginia Foxx (NC -5) with Central NC Chapter staff, Paige Dalton and Board of Trustee Paul Donohoe. 

Upon arriving at Congresswoman Foxx’s Clemmons’ office, we discovered a big step up from the top of the ramp into the building that I failed to clear in my power wheelchair.  Staffers from the Congresswoman’s office and others volunteered to lift me over the high threshold, but the weight of the chair would make this unsafe for both the lifters and me.  With some coaching and maneuvering, I eventually put the chair on the highest power and lurched over the step.

Once safely in, we began to talk to Representative Foxx about the Society’s federal priorities:  MS Research and FDA funding.  Rep. Foxx immediately interjected that while she was for smaller government, she felt that the government had a role in research.  She listened to our stories about our experiences with MS and the benefits we experienced with the disease modifying drugs.  She shared with us that she had lost sight in her right eye and that her father had lost vision.  We found common ground in a shared interest in seeing more research for a variety of diseases. She also indicated that she supported FDA funding.

We appreciated speaking with Congresswoman Foxx in the calmer atmosphere of her local office. These visits are an important step in establishing relationships with our representatives.  The pace on Capitol Hill can be frantic and visits can feel rushed when we try to make four or five visits in a single day, find the accessible entrances,  go through each building’s security and get there to learn that a vote has been called and the Member will not be able to attend.

Leaving the building was as thrilling as entering, as I went lurching over the step in reverse on high power and then had to turn the chair quickly to avoid continuing down the steps. Both Congresswoman Foxx and the management of the Historic Broyhill promised to address the threshold issue and a few weeks later a ramp was installed. While it wasn't the advocacy issue I went to address, I am glad access the building was improved.  Thanks to everyone involved. -- Irene 

Happy Anniversary ADA! Now, where are we?

Today marks the 23^rd anniversary the Americans with Disabilities Act (ADA). This historic piece of civil rights legislation was signed into law by President George H. W. Bush in the summer of 1990.  President Bush, upon signing the measure, said “let the shameful wall of exclusion finally come tumbling down.”

As MS Activists, it is our charge to ensure that inclusion is achieved. It is not enough that folks living with chronic diseases gain employment; it is pertinent that jobs gained are good jobs, including careers with the prospect of upward mobility.  Today just about one-fifth of Americans living with disabilities are active in the workforce. Of these individuals, almost fourteen percent were unable to garner employment in the month of May, according to a report cited by Bloomberg Businessweek.  In the same piece, the author points to the company Walgreens, as a shining example of what all employers should be aiming to emulate.  Walgreens compared variations in performance differences between its distribution centers; some with workforces comprised of mainly people living with disabilities, and others with non-disabled workforces.  This three-year study showed that employee turnover was cut in half with the more diverse workforce, composed predominantly of people with disabilities. Of note, productivity differences were virtually indistinguishable.

As we celebrate the 23^rd anniversary of the ADA, it should also serve as a reminder that there is still work to do.  We must fight for job advancement opportunities and we must work to increase awareness of the huge potential that an entire population has to offer in the labor market. 

SC State Plan for Respite Care Announced

MS Activist Bob Noe recently attended Lt. Governor Glenn McConnell announcement on the completion of a state plan for the SC Lifespan Respite Care Program.  In announcing the plan, McConnell said there are an estimated 770,000 South Carolinians currently serving as unpaid family caregivers. The estimated annual economic value of this unpaid care to South Carolina is over $7.4 billion.

Developed by the State Advisory Committee of the SC Lifespan Respite System, the plan includes 19 recommendations to be phased in over the next 10 years. The recommendations cover a wide range of strategies focused on access to information about respite care resources, greater public awareness of the need for respite care, training for providers and better ways to connect them to people who need their services. At Year 10, the plan calls for a centralized toll-free number/clearinghouse for access to emergency resources for caregivers and care recipients.  

The plan also recommends strengthening the SC Respite Coalition and advocating for state funding to implement the plan and to continue the activities included in the Lifespan Respite Expansion grant.

Annually, the National MS Society ask MS Activists to urge their members of Congress to support the  Lifespan Respite Care Program during the federal appropriation process to ensure that states like South Carolina can coordinate respite care services.  The goal of the program is to improve access to quality respite services for all family caregivers across all ages and special needs.In his announcement, the Lt. Governor said he has asked the state legislature to include funding in the state budget for a voucher program to provide caregivers the break they deserve.  SC Budget Conference Committee members are meeting this week to finalize the FY2014 budget that starts July 1, 2013.

Help the Carolina Chapters With Profiles of Young Adults With MS for World MS Advocacy Day

Again this year, the Carolina Chapters will hold our MS Advocacy and Awareness Days at the North Carolina General Assembly and South Carolina State House in conjunction with World MS Day on May 29. The focus of the World MS Day campaign is “Young People and MS.”

Taking a day to spend at the legislature may not fit into your schedule, so instead we would like to understand how MS affects you and/or other young adults. Please answer the following questions to help the Carolina Chapters share your story. Feel free to answer the questions below in the comment boxes, or email them to nmss.advocacyintern@gmail.com.

• Were you or a family member diagnosed with MS as a young person (between the ages of 18-40?) If so, please explain how this impacted your daily life.
• The National Multiple Sclerosis Society supports many advocacy initiatives such as:  access to health insurance without discrimination, national funding for MS research and accessibility.   When you or your family member were between the ages of 18-40, did any of the these policy initiatives or another cause you to experience the effects of MS differently.
• Throughout the World MS Day campaign, people supporting the motto will be asked your motto.  What is your motto that helps you overcome obstacles and deal with the adversity posed by MS?

For more information about World MS Day, visit http://mymotto.worldmsday.org/en

N.C.Caregiver Relief Act

 Legislation has again been introduced to provide relief for caregivers where leave from work would not be afforded to them under federal law.  The Caregiver Relief Act, filed by Senators Kinnaird, Parmon, and Bryant and Representatives Adams and Hall, would extend the protections of the federal Family Medical Leave Act (FMLA) to allow eligible employees to care for a sibling, grandparent, grandchild, stepparent, or parent-in-law.  Should an employer offer FMLA benefits, the law allows for parent, spouse or child to take12 weeks of unpaid, job-protected leave.

2013 marks the 20th anniversary of FMLA and according to a fact sheet released this year by the NC Justice Center and NC Families Care, the FMLA is the "first and only legislation written specifically to help workers meet the dual responsibilities of family and work." 

The NC Chapters of the National MS Society recognize that the demands of caregiving are being shared by more and more family members and support Caregiver Relief Act.  Mary Bethel, Associate State Director for Advocacy for AARP North Carolina says it best, “Today’s reality is that we are a state of working family caregivers.”

Shortage in Neurologists Could Lead To Longer Wait Times for MS Patients

According to an article by Everyday Health, by 2025, the demand for neurologists will far outnumber the supply, which could create longer wait times for multiple sclerosis patients to see doctors for diagnostics and treatment.  Patients with neurodegenerative diseases like multiple sclerosis (MS), will have to wait longer to see a specialist. Right now patients wait an average of 30 business days for a follow-up visit.

The National MS Society recognized the trend several years ago.  The Society worked in partnership with American Academy of Neurology to support legislation which was never considered which would add neurology to the list of physicians eligible for the primary care incentive in the Affordable Care Act (ACA).  Also the Society offers clinical fellowships and other programs that we hope that will entice people to become neurologists.

To learn more about how the shortage in neurologists could affect you: read the full article here.  If you have experienced a wait time of more than 30 days to see your neurologist or travel more than 75 miles to see a neurologist, please post a comment sharing your story.