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 Over 18 million people in the US and Canada live with mobility issues. But the good news is that there are mobility equipment manufacturers, dealers, certified driver rehabilitation specialists and other professionals in communities around the country dedicated to improving the lives of people with disabilities.
Beginning this year, May will be recognized as National Mobility Awareness Month to show the world that people living with disabilities can live active, mobile lifestyles.
National Mobility Awareness Month encourages seniors, veterans, and people with disabilities to enjoy an active, mobile lifestyle by making them aware of the many automotive mobility solutions provided by members of the National Mobility Equipment Dealers Association (NMEDA). Solutions include items such as wheelchair accessible vans, wheelchair accessible trucks, wheelchair accessible motorcycles, hand controls, lifts, mobility seating and more.
In celebration of the awareness month, NMEDA has created an online contest that will award three lucky winners customized wheelchair accessible vehicles to meet their needs. In support of the awareness month, sponsors such as Toyota, Honda, and Chrysler, have rallied together to provide the vehicles, which will later be customized by NMEDA manufacturers – Braun Ability, Vantage Mobility International and Bruno Independent Living Aids.
Have you risen above your mobility issues to achieve your goals and discover great success in life? Have you struggled to remain independent because of your mobility issues? Do you know of a Local Hero who deserves a free wheelchair accessible van?
Those eligible to win the wheelchair accessible vehicles are distinguished as Local Heroes, who will be encouraged to submit either written or videotaped stories of how they’ve overcome or struggled with mobility issues.
Caregivers, friends and family members are also welcome to submit entries for others. Stories will be accepted on mobilityawarenessmonth.com from March 18, 2012 to May 13, 2012 and voting will take place from April 1, 2012 to May 13, 2012.
Use Code #1055 and get 5 bonus points each time you vote!
 Here I am 30 years ago adjusting a Reciprocating Gait Orthosis--full length, cable driven braces that encompassed the torso and both legs. The device, which was developed by Louisiana State University and Veterans Administration Prosthetic Center, was successful in getting a number of quads ambulating--a miraculous feat back then. It’s amazing how time flies! Forty years since a young streetwise punk strolled into an assistive technology center and had his first encounter with people with spinal cord injuries (SCI).
Hell, I had seen and met SCI before then but didn’t know it. On the streets of NYC back then they sure weren’t called anything as correct as SCI.
It was a center run by the Veterans Administration and the place was jumping with SCI. Vietnam was still hot and combat injured SCI were being saved at a much higher rate than in previous wars. WW2 and Korean War vets were much younger and active then and all over the place. Assistive technologies such as wheelchairs and prosthetic and orthotic devices were much more primitive and many devices and components had to be custom made. No, don’t even think about fat catalogues and websites crammed full of assistive technology devices.
I was an apprentice orthotist at the time. No kidding! An “apprentice”. A not very glamorous position that included sweeping floors and fetching coffee twice a day while you tried to glean precious pearls of wisdom from the closed minds of senior staff. The goal? To get practical experience, get your schooling in, pass your boards, and attain “Certified Orthotist Practioner” status. Which to everyone’s amazement I somehow managed.
Wheelchairs! That was the glue that first got me stuck on SCI. Or maybe it was SCI that glued me to wheelchairs. Wondrous devices, an aggregate of technologies designed to move and liberate people. And who needed more liberating and moving than people with spinal cord injury?
So into the world of wheelchairs and SCI I was thrown with the blessing of most of the other staff who considered people with SCI demanding and cantankerous and who much preferred a more placid audience to ply their trade on. Many of my coworkers considered me a “sucker” or a “dumb rookie” for willingly taking on so notorious a group. But I fooled them because it really turned out to be a love affair.
The years and the thousands of encounters have not in the least diminished the excitement and challenge or the satisfaction. Many of the people I have met and befriended are still in touch and although I no longer actively participate in wheelchair clinics, many contact me for advice whenever they need a wheelchair or have a seating problem. Heading up United Spinal’s Assistive Technology Program thankfully keeps me in touch with more SCI than ever before so new friends are still being added.
While aging is not high on my list of favorites, it does however come with some benefits. It’s actually comforting to be at this end of the spectrum and to have a track record. Being able to look back and know that I made some friends.
Ziggi Landsman
VP of Assistive Technology
The National Disability Leadership Alliance (NDLA)–a coalition of 14 leading disability organizations, including United Spinal Association, has developed an advocacy tool that highlights key principles for providing coordinated quality health care in Medicaid managed care programs for people living with significant disabilities.
As Centers for Medicare and Medicaid Services (CMS) and state Medicaid programs grapple with how best to apply managed care to our higher risk, higher cost population, United Spinal and the NDLA hope this new set of principles will provide utility to these payers, as well as to beneficiaries, their advocates and other stakeholders who must be actively involved in all aspects of program development, evaluation, refinement and innovation.
Such stakeholder engagement will help to ensure that beneficiaries will continue to receive necessary services and supports while reinforcing their capacity to work and enjoy productive, quality lives in their communities.
Among the 16 principles are emphasizing patient choice; advancing home- and community-based services and supports, ensuring access to durable medical equipment and assistive technology; maintaining Medicaid buy-option for low income workers; and supporting family caregivers.
The principles are not intended to oppose managed care applications. They are offered in an effort to ensure that managed care pursuits achieve their intended goals by being fair and deliberate–such as gaining experience and knowledge in stages, while guaranteeing necessary patient protections, care delivery features, performance and quality requisites and emphasis on community integration. With attention to these principles, United Spinal believes federal and state governments will be provided their best chance of achieving lower costs while improving the coordination, continuity and quality of care.
The federal government is currently examining managed care approaches with states in demonstration projects being applied to those dually eligible for both Medicare and Medicaid who account for only 15 percent of Medicaid enrollees but about 40 percent of all Medicaid spending. This population includes 3.5 million beneficiaries with disabilities under the age of 65.
United Spinal and the NDLA urges that the new principles be applied fully by both the Centers for Medicare and Medicaid Services (CMS) and individual state Medicaid programs as they examine ways to broaden the application of managed care to beneficiaries with significant disabilities in the interest of containing spiraling health care costs.
Joseph Isaacs, United Spinal’s VP of Public Policy explains the principles ensure that the transition by states to Medicaid managed care for beneficiaries with significant disabilities is undertaken appropriately.
“Appropriately means, among other things, incrementally and fairly, with consumer planning and self-direction; stakeholder engagement in all aspects of the program; emphasis on community integration and employability; assurances of patient protections, fair appeals processes and nondiscriminatory practices; and access to an adequate provider network and to a full continuum of quality care and long-term services and supports,” says Isaacs.
“United Spinal took the lead on creating this tool with input from NDLA Health/Medicaid Working Group. I think that it will provide considerable utility to our grassroots efforts across the country in view of the stampede by states to managed care for higher cost, higher risk beneficiaries,” Isaacs adds.
Download NDLA’s “Principles For Providing Coordinated Quality Health Care In Medicaid Managed Care Programs For Those Living With Significant Disabilities”
Further Reading: States Stampede Toward Medicaid Managed Care for Beneficiaries with Disabilities
States across the country are responding to reduced tax revenues and growing Medicaid enrollment by rapidly trying to implement “managed care” approaches to constrain expenditures related to their highest cost beneficiaries. These are typically elderly beneficiaries and those with significant disabilities who, in addition to their acute care needs, require long-term services and supports in their home or communities or at facilities.
Under such new payment and financing scenarios, a state program would contract with one or more managed care organizations (MCOs) to offer plans that deliver services and deliver quality care within a specified rate, typically a capitated (per person) fixed payment arrangement. If the MCO can coordinate and deliver such quality care without exceeding the fixed payment rate, it will profit from the difference. If it doesn’t, the MCO will be at risk for considerable losses.
MCOs have had success in containing costs and delivering high quality care for acute care populations and even for some with mental health disorders, but they have limited experience with addressing the needs of a broad range of serious disabilities and delivering long-term services and supports. If states do not design these programs well, services to beneficiaries with disabilities could be denied needed coverage and lose continuity of care with their current providers. Disability advocates must actively participate in all aspects of these programs–from design, to implementation, to evaluation, to oversight and improvements in the spirit of “Nothing about us, without us.”
The National Disability Leadership Alliance (NDLA), a coalition of 14 leading national disability organizations (including United Spinal) led by individuals living with significant disabilities themselves, has developed a handy advocacy tool for this purpose:
Principles for Providing Coordinated Quality Health Care in Medicaid Managed Care Program for Those Living with Significant Disabilities
The tool sets out 16 principles that the Alliance believes should guide the Centers for Medicare and Medicaid Services (CMS) and individual state Medicaid programs in their design of managed care plans that will cover beneficiaries with significant disabilities under Medicaid.
The principles are offered to help constrain costs while simultaneously being fair and allowing time for transition and gaining experience and knowledge in each stage of implementation and guaranteeing necessary patient protections, consumer self-direction and choice, essential care and services delivery features, performance and quality requisites and emphasis on community integration. With attention to these principles, we believe federal and state governments will be provided their best chance of achieving lower costs while improving the coordination, continuity and quality of services and supports where managed care plans are applicable and appropriate for beneficiaries whose daily instrumental functioning and social integration should be the focus rather than the traditional medical model.
The Alliance believes that as CMS and state Medicaid programs grapple with how best to apply managed care to our higher risk, higher cost population, beneficiaries and other stakeholders must be actively involved to help ensure that beneficiaries continue to receive necessary services and supports to enable them to work and enjoy productive, quality lives in their communities. The time for your voice to be heard on this issue is NOW!
Joseph Isaacs, VP Public Policy
United Spinal Association
 Free Webinar––Domestic Violence and Disability
Hosted by United Spinal Association’s membership division NSCIA.
Tuesday, Mar 27, 2012
3:00 PM – 4:00 PM EST
Don’t Fall Victim to Abuse
People with disabilities are more likely to be victims of domestic violence by their loved ones and caregivers. This can include physical abuse; verbal abuse; sexual abuse; neglect; overdosing or withholding medication; financial abuse; and denying necessary mobility equipment.
This webinar will explore the intersection of domestic violence and disability. Information will be provided about programming and services available at Barrier Free Living, Inc. and the importance of specialized programming for survivors of domestic violence living with intellectual and developmental (IDD), physical and/or psychiatric disabilities.
Time will then be spent defining disability and exploring the unique dynamics of domestic violence and disability, with special attention focused on:
- Disability and functioning
- Challenges/obstacles survivors with disabilities may face
- Risks factors for abuse that disabled survivors may be vulnerable to
- Ways in which abusers may exploit a survivor’s disability
- Disability and safety planning
Additionally, dynamics of domestic violence, mental illness and suicidality will be examined, with a focus on Post-traumatic Stress Disorder, Depression, Anxiety, Bipolar I and II, and Borderline Personality Disorder. The presentation will conclude with an open discussion forum for questions and answers.
Presenter: Denise Baker, LMSW and Meghan Romanelli, LMSW–Barrier Free Living, Inc. – Domestic Violence Program
We’ve just begun hosting webinars and we’re already starting to feel the love from participants!
Building on the good vibes and positive feedback from many participants that joined us for our first few webinars, United Spinal’s membership division–NSCIA–is honing in on disability-related topics that are most important to you–our members.
With so many organizations producing webinars these days, we wanted to make sure we took the right approach.
Rather than go into it blindly, we’re keeping an ear to our audience. What do you like or dislike? How can we improve? What subjects interest you? After each webinar we read all of your feedback. It truly helps our team in pinpointing future topics to cover.
We’re new to hosting webinars, but we do feel the subject matter so far has been welcoming to our community. And most importantly, the webinars are free and open to everyone! If you haven’t had a chance to join us, check out our webinar archive. Here you can access all of our past webinars online in one place.
Our first four webinars tackled a wide range of topics–including changes to Medicaid and how to impact policies on the grassroots level; relationship advice for women with disabilities; how to find the right wheelchair and mobility equipment; and how functional electrical stimulation is helping people with disabilities improve their well-being.
You’ll see many more webinars from us in the future as we try to accommodate your suggestions and keep the subject matter interesting.
Here’s a look at what we have in store for the next few months:
Domestic Violence & Disability
March 27, 3pm-4pm (EST)
Speakers: Denise Baker, LMSW and Meghan Romanelli, LMSW–Barrier Free Living, Inc. – Domestic Violence Program
Don’t fall victim to abuse. People with disabilities are more likely to be victims of domestic violence by their loved ones and caregivers. This can include physical abuse; verbal abuse; sexual abuse; neglect; overdosing or withholding medication; financial abuse; and denying necessary mobility equipment.
This webinar will explore the intersection of domestic violence and disability. Within the presentation, trainers will provide information about programming and services available at Barrier Free Living, Inc. and the importance of specialized programming for survivors of domestic violence living with intellectual and developmental (IDD), physical and/or psychiatric disabilities. Time will then be spent defining disability and exploring the unique dynamics of domestic violence and disability, with special attention focused on:
- Disability and functioning
- Challenges/obstacles survivors with disabilities may face
- Risks factors for abuse that disabled survivors may be vulnerable to
- Ways in which abusers may exploit a survivor’s disability
- Disability and safety planning
Additionally, dynamics of domestic violence, mental illness and suicidality will be examined, with a focus on Posttraumatic Stress Disorder, Depression, Anxiety, Bipolar I and II, and Borderline Personality Disorder. The presentation will conclude with an open discussion forum for questions and answers.
Eliminating Medicare Restrictions to Essential Services and Equipment: What Can You Do?
March 29, 2pm-3:15pm (EST)
Speaker: Alexandra Bennewith, Director of Government Relations-United Spinal Association
Medicare has undertaken many changes to therapy services, prescription drug coverage and medical equipment purchases critical to beneficiaries with disabilities. These changes have serious impacts on the accessibility, affordability and quality of needed care. This webinar describes those issues within the Medicare program that impact you, including the following:
- The development of and the need for a separate benefit for customized rehab technology for people with disabilities;
- The importance of eliminating outpatient rehabilitation therapy payment caps; and,
- The support of implementing an appeals process for seniors on Medicare Part D dependent on ‘specialty tier’ prescription drugs
Are you an individual living with a disability that depends on Medicare coverage or a caregiver to someone who does? If so, this webinar will be an eye-opening discussion of how Medicare is already
restricting your healthcare and how some in Congress would like to place more of the burden of cost and acquiring insurance on you in the future.
Learn how to impact policy change through self-advocacy and community activism and how to bring the issues that matter most to you to politicians on Capitol Hill. Together, we can pave the road to greater equality and independence.
This webinar is the second in a series of webinars to better understand how federal programs work, or don’t work, on behalf of people with disabilities.
Financial Planning and Your Child
April 5, 3pm-4pm (EST)
Speaker: Chris Jones, CFP; Center for Wealth Preservation
This webinar will discuss the role of Special Needs Trusts, both first party and second party trusts and the various options on how they might be funded.
What You Need to Know About SSDI and Medicare
April 18, 3pm-4pm (EST)
Speaker: Tai Venuti, MPH, Manager of Strategic Alliances–Allsup, Inc.
This presentation is designed for people who have questions about filing for Social Security Disability insurance SSDI benefits and subsequent Medicare eligibility. It includes a brief history of SSDI, explains the three main SSDI eligibility criteria and the five steps in the SSDI application process, and describes the full range of benefits that come with SSDI, including Medicare eligibility. Becoming eligible for Medicare means reliable access to healthcare, however, understanding how your options work and comparing all the plans available can be frustrating and confusing. This presentation will provide information on the steps you should take when deciding how to use your Medicare benefits. We’ll educate you on all the parts of Medicare – Medicare Parts A, B, C and D, plus Medigap – and what they mean to you. We’ll also let you know what you should think about when considering a Medicare plan.
The Ins and Outs of Manual Wheelchairs–Matching the Wheelchair to Your Life
April 26, 2pm-3:15pm (EST)
Speaker: Ann Eubank, LMSW, OTR/L, ATP; VP Community Initiatives–UsersFirst, a program of United Spinal Association
UsersFirst is hosting a webinar in the structure of radio show where a wheelchair expert will answer any and all of your manual wheelchair questions. We will get into the specifics of the manual wheelchair: the different types, sizes, weights, wheel sizes, backs, seats, wheel position, the best way to push a wheelchair, etc. You name it and we will talk about it.
If you want, tell us your questions or issues prior to the show and we will address them live on the air. Drop us an email at usersfirst@unitedspinal.org. Registration info coming soon!
Thanks Again For Your Support!
NSCIA’s Webinar Team
On March 5-7, United Spinal Association’s Director of Government Relations Alex Bennewith joined activists from around the country in Washington, D.C. for National MS Society’s annual public policy conference in support of legislation needed to improve the lives of people living with multiple sclerosis (MS).
There are approximately 500,000 people in the U.S. living with MS–a chronic, progressive, degenerative disorder that affects nerve fibers in the brain and spinal cord.
One of the main reasons for attending the conference was to urge Congress to provide $5 million for the Lifespan Respite Care Program in the Fiscal Year 2013 Labor-HHS-Education appropriations bill and to reauthorize the program by passing H.R. 3266.
Let’s first start off with why the Lifespan Respite Care Program is important. Respite care offers family caregivers a temporary break from caring for loved ones with disabilities such as MS.
Although many people take great pride in offering their loved ones care so that they can remain at home rather than nursing facilities or other institutions–providing 24/7 care can be challenging both physically and mentally.
A 2011 National Alliance for Caregiving (NAC) survey of individuals providing care to people living with MS shows that:
-On average, caregivers spend 24 hours a week providing care
-64% of caregivers were emotionally drained
-32% suffered from depression
-25% could not focus at work
-22% have lost a job due to caregiving responsibilities
-66% said respite care would allow their care recipient to live at home longer
The Lifespan Respite Care Program, which to this point has been woefully underfunded, would provide grants to state agencies to maximize existing resources and ensure that respite is available and accessible to family caregivers by establishing or enhancing statewide respite systems.
States are mandated to: provide planned and emergency respite services, train and recruit workers and volunteers, offer information to caregivers about support services, and assist caregivers in gaining access to services.
Unlike much existing respite care, the Lifespan Respite Care Program serves families regardless of special need or age.
Despite all of the benefits this program would bring to families affected by MS, it has only received $7.5 million in total funding, out of an authorized $290 million that was promised over a 5-year period.
United Spinal supports the efforts of the National MS Society (NMSS) and other MS organizations in bringing attention to the benefits of the Lifespan Respite Care Program. Our Public Policy staff will continue to advocate through their own channels to ensure people living with MS and their families and loves ones, receive appropriate services and supports.
United Spinal is a member of the Multiple Sclerosis Coalition, other members that are part of the MS Coalition are:
Accelerated Cure Project for Multiple Sclerosis
Consortium of Multiple Sclerosis Centers (CMSC)
Can do Multiple Sclerosis
International Organization of MS Nurses (IOMSN)
Multiple Sclerosis Association of America
Multiple Sclerosis Foundation
National MS Society
United Spinal provides a variety of programs and services to empower people of all ages living with spinal cord injuries and disorders (SCI/D)–such as MS, amyotrophic lateral sclerosis, and spina bifida.
We also advocate on behalf of the more than one million individuals throughout the country living with SCI/D.
September 11th is a date with a global imprint, but for George Flores its burden is heavier than for most of us. On 9/11/04 George was returning from a concert on his motorcycle. He’d been there as a promise to a friend who was managing the band. It was more of a commitment than a night out for George who’d already lived his dream to be on stage as lead singer for Thrash Speed, part of the Chicago heavy metal scene from the late ’80s through the early ’90s. He was being courted to join the band, go on tour, and reenter the scene that he’d moved on from years before.
He’d knocked around since that time, doing skilled factory work, taking other odd jobs. More significantly, he’d invested himself, his passion and his skills to become a respected harp technician. An odd juxtaposition for a guy from Thrash Speed, but George’s life hasn’t exactly been a straight line. He’s always been good with his hands and machinery, growing up in Chicago with a single mom, being called on by her to fix appliances as a necessity. When George speaks of his mom there’s no resentment, just the love and respect of a son who grew up quicker than most, accepting his role to help keep the wheels on the cart. His independent spirit and stubborn pride would be qualities that would serve him in ways he could never have anticipated growing up in Chicago.
Read the full story at www.nablement.com.
 United Spinal Association’s membership division National Spinal Cord Injury Association (NSCIA), is hosting an on-line auction of the “Healing Harp”–a world class Grand Concert Harp built by George Flores — a master harp builder/technician and wheelchair user.
Auction proceeds will benefit people living with spinal cord injuries and disorders (SCI/D) nationwide.
The auction, which will run from March 12-22, was officially announced on February 18 at NSCIA’s Dinner with Friends, at The Lexington House in Hickory Hills, IL (south Chicago suburbs).
Access the harp auction on Ebay (March 12-22).
World renowned professional harpist Merry Miller performed on the Healing Harp and George Flores was on hand to mark the occasion.
Check out the video of Merry’s performance of “It’s a Wonderful World” here.
Flores, an NSCIA member who was paralyzed in a motorcycle accident in 2004, created his 47-string harp with the aid of a stand-up wheelchair that allowed him to build, calibrate, and tune at the highest places of this tall symphonic instrument.
“I thought about the fact that harps are known around the world as being a healing instrument. I thought this would be a great opportunity to bring that same healing power to the world and all people with disabilities, including people with spinal cord injuries and disorders,” said Flores who built the harp with the support of the Venus Harp Company, a world leader in harp manufacturing.
Flores chose NSCIA as the beneficiary of his labor of love due to their support in navigating doctors and helping him successfully advocate for a stand-up wheelchair during his rehabilitation, as well as their ability to help others lead full and independent lives with spinal cord injury or disorder.
“This gift is clearly the most creative and unique donation we have received in our 65 plus year history,” said K. Eric Larson, United Spinal Senior Vice President of Membership and Chapter Services.
“The funds generated through this auction will directly support our mission of enabling people living with spinal cord injury and disease (like George Flores) to achieve the highest possible quality of life,” he added.
The custom-built Venus Aria model Grand Concert Harp in natural finish with hand painted soundboard and handpicked special veneers has a new technology no other harp in the world has, which was implemented in this particular harp. The technology strengthens the overall structure and enhances the acoustic properties of the wood. The Healing Harp is valued at $40,000.
For more information visit www.spinalcord.org/the-healing-harp-auction/.
United Spinal Association’s general counsel Jim Weisman will be featured in a documentary film project entitled “When I Walk” created by Jason DaSilva, a filmmaker chronicling his experience living with primary-progressive MS.
A short clip which includes footage of Jim discussing wheelchair accessible taxis was used in this New York Observer article.
Since graduating from Seton Hall University Law School, Jim has represented disabled people and organizations of disabled people in order to enhance the quality of their lives and to protect and promote their civil rights.
For over 30 years, he has been general counsel for United Spinal Association, where he provides legal assistance in all of their endeavors. In July 1995, he became a founding member of the Board of Directors of the American Association of People with Disabilities and in 2003 was elected Chairman of the Board.
He was key negotiator with members of Congress in drafting and supporting the passage of the Americans with Disabilities Act (ADA).
To learn more about this film project and how you can support it, please visit at www.wheniwalk.com.
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