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Welcome to our Hospital Members Webinar
Introductions Paul Tobin – President and CEO
Bill Fertig – Manager, NSCIA Resource Center
Lindsey Whitcomb – Social Worker (National Spinal Cord Injury Association)
Nick LiBassi – Director of Special Projects
NSCIA Is The Membership Division of United Spinal Association
Mission Statement
Our mission is to improve the quality of life of all people living with spinal cord injuries and disorders (SCI/D).
We provide active-lifestyle information, peer support and advocacy that empower individuals to achieve their highest potential in all facets of life.
The focus of this webinar is to provide you with the basic
structure of United Spinal Association as well as to
explain how each program works towards fulfilling the
organizations mission.
About us: • Founded in 1948 • Consumer-run, nonprofit 501(c)(3) • Authors of title II of the ADA • 60 years of policy experience (locally and nationally) • 40,000 members nationally • Nation-Wide Chapters • Over 177 support groups (peer to peer) • Over 100 Hospital Members • Field over 550 consumer inquires per month
What role does NSCIA play in the SCI/D Community?
Our Programs
Life in Action
Our free membership publication (bi-monthly) About our members
New Mobility
Our paid monthly subscription magazine encourages the integration of active-lifestyle wheelchair users into mainstream society, while simultaneously reflecting the vibrant world of disability-related arts, media, advocacy and philosophy. Our stories foster a sense of community and empower readers to: Participate in all areas of life, including education, work, love, sex, home ownership, parenting, sports,
recreation, travel and entertainment
Be informed of and take charge of health concerns
Obtain appropriate technology
Assert legal rights.
Free Publications
With over 15 various publications covering numerous topics such as disability etiquette, understanding the ADA, the fair housing act and others, it allows us to aide our members in areas that are important to their needs. Please visit the following website for downloadable copies: http://www.unitedspinal.org/disability-
publications-resources/disability-publications/
• Our on-line resources are organized by Knowledge Book heading, chapter and page per topic area.
Browse - SCC Knowledge Books for answers Search - by desired topic or key word
• ‘Ask’ Spinal Cord Central – Submit your question via web form
• SCC Information Specialists living with SCI/D, our Social Worker or SCI nurse will promptly respond to your question with compassion and understanding.
• If you need to speak with an Information Specialist directly, please call Spinal Cord Central at 800-962-9629 8:30AM -5:00PM, Eastern time except federal holidays.
Resource Center topics Popular Spinal Cord Central topics include:
New Spinal Cord Injury/Disease Onset-Where do I locate appropriate SCI/D rehab?
Ongoing SCI/D Health & Wellness - How do I best manage my bladder or bowel?
Financial Assistance - Where can I get help paying for my shower chair?
Employment - How can I return to work without losing my benefits?
State/Local Resources - Where can I find a NSCIA Chapter or Support Group?
Home Modifications - How do I get ramp/bath modification?
Self-advocacy! How do I….(Insert almost anything mobility or disability-related here?)
Users First
Advocates for improved access to seating and mobility equipment and denounces the long-
established “one-size-fits-all” mentality when it comes to the selection of wheelchairs and
other mobility devices. UsersFirst ensures people with disabilities nationwide have access to
equipment that’s right for them, so they can live the lives they choose.
Public Policy
With an office located in Washington, DC, United Spinal works closely with legislative
officials to ensure national policy does not impede the rights and access to services for
individuals with SCI/D.
USA Techguide
Our web hub exclusively dedicated to sharing information on
the latest wheelchairs, mobility scooters, and assistive
technology choices . We receive over 50,000 visitors per
month. It’s the first place many people with disabilities stop
before purchasing new gear. Visitors can read and submit
reviews on all types of assistive equipment.
Vets First • United Spinal is committed to serving our nation’s veterans and their family members
in obtaining the benefits and services they desperately need and deserve. Vets First advocates for all generations of veterans, including individuals living with post-traumatic stress disorder and traumatic brain injuries.
Accessibility Services • Is a program that ensures that the built environment is accessible to all people with
disabilities, from wheelchair-users to those who use canes, walkers, and scooters. Our certified specialists, plan examiners, attorneys, architects and code enforcement officials maintain the highest accessibility standards as key consultants on projects big and small, including arenas, sports venues, museums, residential projects, and concert halls.
Able to Travel • Meets all the accessibility needs of business and leisure travelers with disabilities,
including air travel, transportation, cruises, tours and excursions, hotel accommodations, and access to vital medical equipment.
NSCIA Chapters Connecticut Chapter, NSCIA NSCIA Central Florida
NSCIA Greater Atlanta Chapter SCI Association of Iowa SCI Association of Illinois
Derby City Chapter, NSCIA Louisiana Disability Alliance, NSCIA
Greater Boston Chapter, NSCIA SCI Network of DC Metropolitan Area, NSCIA Michigan Chapter, NSCIA
Minnesota Spinal Cord Injury Association Greater Kansas City SCIA
North Carolina Chapter, NSCIA NSCIA Southeastern Wisconsin NSCIA Tennessee NSCIA Madison, WI Scranton, PA Chapter of NSCIA Pittsburgh, PA Chapter
New Hampshire Chapter, NSCIA
New York City Chapter, NSCIA (NYCSCIA) Greater Rochester Area Chapter, NSCIA
Northwest Ohio Chapter, NSCIA Northeast Ohio Chapter, NSCIA
Oklahoma Chapter Greater Philadelphia Chapter of the NSCIA
NSCIA Rhode Island chapter South Carolina Chapter, NSCIA Rio Grande Chapter, NSCIA
Texas Gulf Coast Chapter of NSCIA The Alamo of San Antonio Chapter, NSCIA Spinal Cord Injury Association of Virginia Las Vegas NSCIA Placerville, CA Chapter NSCIA Nashville, TN Chapter Colorado Chapter Arizona Chapter Buffalo, NY Chapter
Peer Support / Support Groups
• Foster a positive outlook • Create a sense of belonging • Gives individuals ideas of the
possilblies that lay ahead • Learn about SCI and what to
expect moving forward • Builds a sense of community &
camaraderie
• It is the key to self-advocacy
Why is peer support important?
NSCIA believes peer support is a critical component of our mission of empowering all people living with spinal cord injuries and
disorders (SCI/D) to reach the highest possible quality of life. We actively promote
the availability of peer support groups of which we are aware through our resource
center, programs and member communications.
We currently have 170 active support groups throughout the
country. We are actively looking for and always welcome new groups to join our growing network and become and affiliate of
NSCIA.
What does it mean to become an Affiliate? Active referral of persons in need of support to you
by our resource center staff
Listing of your support group on our website by state
at http://www.spinalcord.org/sci-support-groups/
Opportunities for your members to learn about and
join in advocacy efforts
Organizational support through our Membership and
Chapter Services team
Opportunity to become part of the “Spinal Network”
community (http://www.spinalnetwork.org/) which
allows your group to be eligible for grants!!
1. Your support group provides an ongoing forum to support individuals with spinal
cord injury or disease (SCI/D), their families and friends to empower these
individuals to achieve the highest possible quality of life.
2. Your meetings and services are open and available broadly to anyone in your
community with SCI/D, and are not limited to any one group such as clients of a
specific hospital or professional practice.
3. You host regular peer support meetings at least monthly, and are willing to have
the date, time and location of those meetings published publically in advance by
NSCIA.
4. You will share NSCIA provided information and materials with support group
attendees.
There is no cost to becoming an NSCIA-affiliated support group. However, the following requirements must be met:
For all those who are interested in joining our ever growing peer-support network,
please contact:
Lindsey Elliott, MSW at
718-803-3782 ext. 7241
How does policy affect our members? • Federal legislation eventually trickles down to the state level
• Reduction in benefits and/or services
• Access to equipment, transportation, employment, and housing
• Quality of life
Why is it important to have Chapter support? • State legislation often mirror’s other state legislation • Local representation on issues that affect a particular geographic
area • Ability to quickly mobilize • Better understanding of the affects caused by policy change
Policy HR 942 – Ensuring Access to Quality Complex Rehabilitation Technology Act of 2012
Create a separate benefit category for Complex Rehab Technology (CRT) within the Medicare program so that access to critical technology and related services can be assured.
HR 6490 – the Medicare DMEPOS Market Pricing Program Act of 2012
Under their bidding program CMS is restricting access of vital medical equipment to their consumers. Essentially providers must bid on equipment, then CMS gives the bid to the midpoint price bidder. They disregard other bids, regardless of provider’s knowledge and expertise with the specific equipment. This bill helps to reduce the number of areas that are subject to the restrictions on providers and ultimately the consumer.
Health Reform Implementation Regulations
Multiple health reform regulations came out at the end of November related to the Affordable Care Act including a proposed rule on essential health benefits and actuarial value; nondiscriminatory wellness programs in group health plans; health care exchange rules as well as health insurance market rules.
SCI data registry
• We are conducting research on the feasibility of a legislative/regulatory strategy
around the establishment of a state and/or national data registry or surveillance
programs to collect research data points on the SCI community.
Therapy Cap Coalition – Consumer Advocacy Campaign
• As a member of this coalition we worked on creating a consumer advocacy
campaign urging repeal of the therapy cap – that is urging an extension to
the exceptions process.
• The exceptions process allows people to submit requests for continued
coverage for their critical rehab needs.
Our organization along with members and advocates converge on Capitol Hill to speak directly with legislators
about the issues that affect our members’ daily independence and quality of life.
Our first Roll on Capitol Hill was in 2012 was a wakeup call to policymakers about the need for greater access to quality health care, prescription drugs, wheelchairs and assistive technology, and most importantly the inclusion of people with disabilities in the legislative dialogue. ROCH 2013 was even more successful and we are in the planning stages for
our 2014 ROCH.
How does NSCIA Help Hospital Members Make a Difference?
Answer any questions that may arise (leverage our expertise) make connections
Provide vital information to relay to patients/family members/caregivers
Expose individuals to various programs and services to help them better adjust and excel once they leave the facility
Show that there is life after SCI!
New Beginning Backpack Initiative
Hollister has generously donated up to 3000 cases of catheters to United Spinal This donation is in celebration of Hollister’s 10-year anniversary of the launch of Advance Plus Touch Free Intermittent Catheters. If clients/patients of your group are interested in receiving some of these free catheters, please fill out the request form (http://www.spinalcord.org/hollister/catheterdonation.html) and the catheters will be shipped directly to you. You can then distribute them to your clients who have a valid prescription. The deadline date to place a request is October 1, 2013.
Our mission is to improve the quality of life of all people living with spinal cord injuries
and disorders (SCI/D).
We provide active-lifestyle information, peer support and advocacy that empower
individuals to achieve their highest potential in all facets of life.
Feedback? Are there additional ways in which NSCIA may be able to better assist your program?
Specific Webinars?
Provide Literature?
Monthly/Quarterly conference calls?
Other?
Thank you for
participating in our
Hospital Membership
Program, and for
supporting the SCI/D
community.
Please contact: Nick LiBassi 718-803-3782 Ext. 7410 [email protected]
