1 July 2017 United Spinal Association Chapter Leaders Newsletter Welcome to United Spinal Associations Quarterly Chapter Leadership E-Newsletter CLM Quarterly Call Update: There will be no quarterly Chapter Leaders call in October, as we will be meeting face-to-face in Las Vegas for our Annual Chapter Leadership Meeting. The meeting will take place October 19-21, 2017. Chapter Leadership Meeting: October 19-21, 2017, The Rio, Las Vegas, NV If you wish to make a difference and help strengthen your chapter and our community this meeting will give you the contacts, tools, and resources to do so. This event is an opportunity for you to network with your peers and to build relationships that will help you moving forward. As an attendee you will required to participate. Please apply to attend by visiting the following link: https://www.unitedspinal.org/clmapplication/ (If you need to manually type the link be sure to include the "https" and not "http"). Applications are due by August 11th, 2017. Should you application be accepted, United Spinal Association will provide a $325.00 travel stipend to all approved registrants. Registrants bringing a PCA will also receive the travel stipend for their PCA. United
Transcript
1
July 2017 United Spinal Association Chapter Leaders Newsletter
Welcome to United Spinal Associations Quarterly Chapter Leadership E-Newsletter
CLM Quarterly Call Update: There will be no quarterly Chapter Leaders call in October, as we will be meeting face-to-face in Las Vegas for our Annual Chapter Leadership Meeting. The meeting will take place October 19-21, 2017. Chapter Leadership Meeting: October 19-21, 2017, The Rio, Las Vegas, NV If you wish to make a difference and help strengthen your chapter and our community this meeting will give you the contacts, tools, and resources to do so. This event is an opportunity for you to network with your peers and to build relationships that will help you moving forward. As an attendee you will required to participate. Please apply to attend by visiting the following link: https://www.unitedspinal.org/clmapplication/ (If you need to manually type the link be sure to include the "https" and not "http"). Applications are due by August 11th, 2017. Should you application be accepted, United Spinal Association will provide a $325.00 travel stipend to all approved registrants. Registrants bringing a PCA will also receive the travel stipend for their PCA. United
2
Spinal also covers the room, resort fees and tax charges for the two nights of the event (Thursday, October 19 and Friday, October 20). The stipend is provided following the event (an expense reimbursement form is submitted with receipts and then checks are mailed). If you would like to have more then one representative from your chapter or should you need additional information about the Chapter Leadership Meeting please feel free to contact me directly. New Chapter Update: Arizona Chapter (Gina Schuh)
The entire board of the Arizona Chapter is very excited to be part of the United Spinal Association team! The board is made up of five women, and all of them are wheelchair users. They recently met and have lofty goals
for the chapter. They are hoping to establish a presence in Arizona's political arena and strive to change negative stereotypes that have plagued the disability community. They plan on offering something similar
(much smaller scale) to Roll On Capitol Hill for Arizonans. The first goal is to implement a program that results in ADA compliance officer inspections, as well as achieve a certain required number of barrier free showers in apartment complexes. The chapter will also continue outreach to those with severe mobility impairments that
are in assisted living facilities.
Policy Update:
1. Roll on Capitol Hill 2017
3
It was great to see everyone this year! New chapters were represented and as many as about 50 new faces attended the Roll for the first time this year. We had great impact on the Hill with multiple new sponsors on our bills for CRT, veteran’s issues and disability rights. For more information about the Roll, click here. Save the Date: Next year’s Roll: June 24-27, 2017. For more information on Advocacy, check out our advocacy newsletters here or to sign up to our advocacy newsletters, click here.
2. Achieving Better Life Experience United Spinal is a partner of the ABLE National Resource Center Initiative. United Spinal played an important part in helping to pass the Achieving a Better Life Experience Act since the bill was included as one of our priorities at Roll on Capitol Hill 2014, shortly after which, President Obama signed the Achieving a Better Life Experience Act bill into law. ABLE accounts are tax-advantaged savings accounts that have the potential to significantly increase the independence and quality of life of individuals with disabilities without jeopardizing much-needed benefits such as Medicaid and Supplemental Security Income.
As of May 2017, 48 states, plus the District of Columbia, have passed ABLE Act legislation and 23 states have launched ABLE programs (most of which are national programs). Stay tuned for the upcoming Able to Save Campaign throughout the month of August, beginning July 30 through September 2. How you can Help? In the meantime, United Spinal appreciates your help in providing some information about whether you have an ABLE account or not, please fill out the short survey here by August 9, 2017.
3. REV UP Campaign – National Disability Voter Week
National Disability Voter Registration Week, this July 17-21, brings together disability rights advocates, local, state, and national disability organizations, civil rights organizations, elections administrators, and our allies to increase nonpartisan voter registration, education, and participation in the disability community. United Spinal Association is a REV UP campaign partner. See how you can get involved
4. What’s new! Take Action - Protect our rights
Air Carrier Access Amendments Act
Senator Tammy Baldwin from Wisconsin is championing air travel rights for people with disabilities by introducing a bill, the Air Carriers Access Amendments Act (S.1318). The Senator’s bill puts more
4
teeth in existing law, by increasing penalties for damaged wheelchairs, and allowing air travelers to sue in court to recover damages. Senator Baldwin’s legislation ensures higher standards for accessibility, safety and airport and airline employee training. The groundbreaking measure would also help create a passengers with disabilities bill of rights along with a Federal advisory committee on the air travel needs of passengers with disabilities. TAKE ACTION NOW!
Don’t attack the ADA
United Spinal Association opposes H.R. 620 – The ADA Education and Reform Act. This bill limits the ability of people with disabilities to enforce their rights under the ADA to access places of public accommodation in the same manner as all other citizens and would require individuals with disabilities to send a letter of notification to the business that it is out of compliance with the law, allow 60 days for them to acknowledge the barrier and allow businesses another 120 days to fix the access problem. No other civil rights group is forced to wait 180 days to enforce their civil rights. Businesses could employ a “wait and see” approach, continuing to violate the law with impunity. Oppose this bill and TAKE ACTION NOW!
Peer Mentoring: Our peer-mentoring program continues to grow as we’ve trained 5 new chapters so far this year! Our most recent training was held on July 8th with our LA Chapter (pictured). To date we have trained over 307 mentors and served over 467 peers nationwide! Keep up the good work and if anyone is interested in learning more about the peer-mentoring program please contact Lindsey Elliott at [email protected]
5
Reminder: Please send us photos of your events!
We have created a form on the Chapter Leader Zone for you to quickly upload your photos and add descriptions if you choose.
Click here to upload Chapter photos Chapter Contact Information: Our resource center has notified us that they are finding outdated/inaccurate chapter contact information on our website. Please go the following link and find your chapter and make sure that the chapter contact information is correct: http://www.spinalcord.org/chapters/directory/ If you need to make changes you can go to the Chapter Leader Zone and look for the form “Chapter Listing Form” in the Quick Jumps section. You can fill this out online and submit and the information will be reviewed and then updated on the website. Please note that you can do this anytime you make a change. Development: From United Spinal Associations Development Team
Development Spotlight Placerville, CA Chapter Hangtown Cranker Classic
6
Please review best practices submitted by Lynn Murray, Director for the HANGTOWN CRANKER CLASSIC,
HOSTED BY THE PLACERVILLE MOBILITY SUPPORT GROUP
Overview: 1 Mission: A) Decrease the “distance” between the ambulatory and non-ambulatory communities by joining
them in a fun, healthful event; B) PMSG motto: “Get up. Get out. Get better.” We advocate physical activity – no matter how small – to help maintain good mental, emotional and physical health.
2 Local existing facility: El Dorado Trail (Class 1 bike path) – 19 mile route with 1000 foot gain 3 Staging area: large parking lot donated by local dentist 4 City of Sacramento Access Leisure donated staff, bikes and training for newbies LESSON value
volunteerism, consider monetary compensation in budget 5 First year: 2011 – participants: 10 handcyclists; 10 bicyclists 6 Extra draw – Mark Wellman with climbing wall 7 Barbecue followed ride 8 Fee: $20 adults; $15 children under 14 years; $15 family (3 persons) 9 Event continued to be slated for late June. Heat decreased quad participation. Event moved to October in
Nothing is sacred. Best practices: • Organize, organize, organize. Anticipate every possible contingency no matter how small. Seek input from
persons/organizations that have done this before. Don’t reinvent the wheel! • Advertise in all mediums: local television, local radio, local and regional newspaper, local magazine, fliers,
posters, presentations to community service clubs, word-of-mouth, social media • Use Chamber of Commerce. This helps them promote the area; this helps them do that. • LESSON Hosting a fundraising event – no matter how small – is a humbling experience. You do NOT know
everything. If you think “you’ve got this,” you’re toast. Invite suggestions and welcome criticism. Then, use them!
Secret Sauce: • LESSON Keep the event’s mission foremost. If the event does not serve a distinct purpose (purposes), then
it’s a waste of time and money. It will fail. • LESSON Most USA Chapters are volunteer-run. Few have budgets that permit salaries. These people must be
valued in tangible ways. Work on that. Everybody appreciates a well-earned (and deserved) “attaboy”. Dollars and cents (sense): 1 Hangtown Cranker Classic (HCC) cost: $2000 to $4000 2 HCC profit: $200 to $600 3 Total riders (handcycle and bicycle): 87 4 Is it worth it? When you see a newbie grinning ear-to-ear after climbing Wellman’s wall, or after taking their
first handcycle ride, it’s worth it. When one sees a walkie having a fun conversation with a gimp (maybe
7
for the first time), it’s worth it. In other words, “fundraiser” may be a misnomer for some of most valuable events.
Interesting Opportunities:
Chapter Activity Idea & Funding – Host a MAPPING EVENT, $500 Donation to your Chapter and United Spinal!
Access Earth (http://access.earth) is an iOS and Android mobile app and website that allows users to rate places by their accessibility for people with mobility impairments. To help with this they are looking for United Spinal Association Chapters to run mapping events in association with Access Earth. An Access Earth mapping event involves an afternoon where participants go out to a certain part of a town or city and while in teams begin using the mobile app to rate the places that are found around them. The latest mapping event was held at the beginning of May in Philadelphia where over the afternoon 35 participants rated over 250 places during the two-hour event. Alanna Raffel the occupational therapist who helped organised the event said: “Working on this event has been so rewarding for me. As I began to think about plans for my birthday, I knew I wanted to do something meaningful. Doing a mapping event was the perfect way to promote awareness, get people involved and collect information.” In order to help with this initiative Access Earth will donate $500 dollars to the chapter as well as $500 to the national United Spinal Association organisation. If you are interested in helping to run an event with your chapter contact Matt McCann at [email protected].
8
Hello from Google! The Google Accessibility Engineering Team is looking for persons with disabilities to become testers of new Google products with the purpose of providing accessibility feedback to the engineering teams here at Google. If deemed a fit, participants in the program will have the opportunity to share their thoughts on some cool new products we’re working on, interact directly with teams at Google via email, phone and/or video chat, all while helping to make our products more accessible. For the pilot program, which may last up to one year, we are looking for tech-savvy users who are at least 18 years of age and reside in the U.S. Anyone interested in the program should fill out this survey, which is also linked below. If you feel people in your network may like to hear about the program, you may forward an invitation to fill out the survey. Sign up form link: https://goo.gl/forms/eVlMN8pTOJOXhUN22 Have questions about the program? Feel free to contact [email protected].
Resource Center Update: SCI Model Systems Knowledge Translation Center Fact sheets and video content: http://www.msktc.org/sci Model Systems Knowledge Translation Center American Institutes for Research 1000 Thomas Jefferson Street, NW Washington, DC 20007 Phone: 202-403-5600 TTY: 877-334-3499 Email: [email protected] The Model Systems Knowledge Translation Center (MSKTC) summarizes research, identifies health information needs, and develops information resources to support the Model Systems programs in meeting the needs of individuals with traumatic brain injury (TBI), spinal cord injury (SCI), and burn injury. The Model Systems are funded by the National Institute on Disability, Independent Living, and Rehabilitation
9
Research (NIDILRR) to conduct innovative and high-quality research, provide patient care, and offer other services to improve the health and overall quality of life for individuals with TBI, SCI, and burn injury. For more information regarding The Model Systems Knowledge Translation Center: https://www.dropbox.com/s/51regd0ifmebf3a/SCIMS%20Facts%20and%20Figures%202017_FINAL.pdf?dl=0 United Spinal Association Resource Center Activity United Spinal Association Information Specialists responded to incoming live phone inquiries, returned voice messages and monitored direct email inquiries entering the Resource Center via web form or other email sources such as other staff member referrals. May & June combined cases closed: 755 Total staff interactions, all closed cases: 1770 Closed cases by category: 26 Accessibility 15 Adaptive Sports & Recreation 07 Benefits & Social Services 04 Employment & Education 13 Finances 38 Health & Wellness 12 Housing
06 In-Home Services 147 Member Services 24 New injury cases 15 Organization/company Inquiry
11 Other, SCI/D Related 254 Peer Support 16 Research & Clinical Trials
30 Wheelchair related Employment Opportunities:
We have partnered with many employers who are seeking to hire people with disabilities. Attached and below are some of the current opportunities presented by these companies. Feel free to distribute to your networks. Please be sure to indicate United Spinal in referral field. CVS – https://www.dropbox.com/s/0eh9edz1id01drj/CVS%20Jobs.xlsx?dl=0 Mobility Ventures - http://www.amgeneral.com/careers/ Merck - http://bit.ly/NJMERCKde American Airlines - http://careers.aa.com/en/ac/careers.rss Excellus Blue Shield – https://re12.ultipro.com/EXC1006/JobBoard/ListJobs.aspx?__VT=EXTCan Pratt & Whitney Entry-Level Date Open
Req ID Job Title Location Pay Type
5-Jun-17 49983BR Assoc Anlst, Engrg Svcs East Hartford
Salary
10
8-Jun-17 50106BR Entry-level Structures Engineer Fan-Externals East Hartford
Salary
7-Jun-17 49410BR Program Support Coordinator East Hartford
Salary
8-Jun-17 49760BR Analyst, IT System Design, Development, Analysis East Hartford
Salary
8-Jun-17 49943BR Analyst – Financial Planning & Analysis East Hartford
Salary
6-Jun-17 50012BR Mechanical Engineer East Hartford
Salary
9-Jun-17 50062BR IPT Lead - 30k Nacelle Static Hardware East Hartford
Salary
Mid-Level Date Open
Req ID Job Title Location Pay Type
7-Jun-17 48628BR Sr F135 ALIS Integration Analyst East Hartford
Salary
5-Jun-17 49557BR Laboratory Quality Notifications Coordinator-MRB East Hartford
Salary
5-Jun-17 49695BR Financial Analyst, Commercial Engines Business Development
East Hartford
Salary
8-Jun-17 49906BR I.T. Infrastructure Analyst East Hartford
Salary
6-Jun-17 49914BR Propulsion Systems Engineer East Hartford
Salary
6-Jun-17 49928BR F100 Logisitcs Program Manager - Singapore East Hartford
Salary
7-Jun-17 49937BR Support Equipment Fleet Manager East Hartford
Salary
8-Jun-17 49960BR Support Equipment Deputy East Hartford
Salary
8-Jun-17 50147BR Sr. Analyst, Accounting East Hartford
Salary
8-Jun-17 50187BR Heat Transfer Analyst East Hartford
Salary
7-Jun-17 49730BR Deputy Unmanned Systems Manager East Hartford
Salary
8-Jun-17 49797BR International Contractor Program Security Officer (CPSO) East Hartford
Salary
6-Jun-17 49912BR Propulsion Systems Engineer East Hartford
Salary
7-Jun-17 49938BR Support Equipment Project Engineer Team Lead East Hartford
Salary
8-Jun-17 50063BR Cont Spec, Cont/War East Hartford
Salary
8-Jun-17 50077BR International Trade Compliance Site Manager East Hartford
Salary
7-Jun-17 50091BR F100 Logistics Program Manager East Salary
11
Hartford 8-Jun-17 50149BR Accounting Specialist East
Hartford Salary
Senior-Level Date Open
Req ID Job Title Location Pay Type
8-Jun-17 48996BR Manager, IT Bus Consultg East Hartford
Salary
6-Jun-17 49166BR Program Planning and Scheduling Discipline Lead East Hartford
Salary
8-Jun-17 50076BR UTC Attorney Pratt & Whitney Finance & Leasing East Hartford
Salary
8-Jun-17 50135BR Military Engines Business Development Turkey Country Mgr.
East Hartford
Salary
Research Study:
The SCI Model Systems is conducting a survey study. The purpose of the study is to assess how spasticity is experienced by individuals with SCI, which characteristics of spasticity have the greatest impact on activities of daily living and the perceived value of current treatment strategies. We hope that our study will guide future research to look at very individualized spasticity management. The survey is online and takes about 15-20 minutes to complete. It is totally anonymous. https://is.gd/SCIMS_Spasticity_Survey Supporter content:
Take Advantage of Hill-Rom’s Patient Advocate Services – Empower health at home Please take note of how clinical beds at home can effectively assist caregivers, aid in advanced positioning, offer a safer environment for transfers, and provide a variety of solutions for SCI/D individuals. United Spinal has partnered with Hill-Rom as they offer comprehensive resources to collaborated and educate individuals and their doctors and clinical team on the best product options that align with their documented level of care. They also work with your insurance and their entire clinical team that may include doctors, nurses, case managers, PT/OT, home health, wound care professionals, other advocates among others. Hill-Rom manufactures specialty hospital beds, therapy surfaces, prevention mattresses, electric lifts and slings. Chapter Leaders – Please contact Tricia Litzinger, RN, BSN, CCM, CDS, WCC, Director of Case Management and Clinical Services at 812-212-2563 for clinical consultation for referrals and to discuss how your chapter can receive information for chapter events or make a presentation to your members via a call or in person. United Spinal Members – Contact Hill-Rom’s Patient Advocates to take advantage of their highly skilled team to discuss how a specialty bed at home could improve independence and achieve healthier outcomes. Patient Advocates can be reach at 800-833-4291. Tell them United Spinal referred you.
Brought to us by the Consumer Technology Association Foundation that serves on United Spinal’s Corporate Advisory Coucil, LM Labs just posted a new project that you might be interested in and there is prize money involved for winning design(s). This could be an individual submission or a chapter effort – with prize money benefitting the chapter. Worth a try! See details to follow:
Autonomous For All Of Us Challenge for #AccessibleOlli
At CES 2017, the Consumer Technology Association (CTA) Foundation, IBM and Local Motors launched an initiative to make Olli, Local Motors’ autonomous cognitive bus, the world’s most accessible transportation vehicle, #AccessibleOlli. Over the past few months, we have held several workshops, hackathons and other outreach events to develop a better understanding of the transportation requirements for people of all ages and abilities. Now it is time to take the next step - a call to action to join the #AccessibleOlli Challenge: Autonomous for All of Us. We need YOU to join the action. Give us your ideas to take Olli to the next level. You might be a technology company, industrial designer, fabricator, software developer or engineer. Or you might be a city planner, transit authority professional or public transportation rider that has an awe-inspiring idea to make Olli more accessible. So think small things, think big things, just make sure to think these things out loud in our Challenge. Olli is on the drawing board. Your input will help improve the rider experience, making it accessible for all. Going beyond ramps and rails, we want to really push the envelope of what it means to be accessible for all by utilizing the latest AI innovations and IoT technologies together with deeper integration with IBM Watson. We are not content just to meet accessible compliance standards; rather our goal is to create the most accessible, personalized transportation experience while changing the way that people interact with mobility. With 15 prizes awarded in 5 categories, each focusing on different areas of accessibility, there is plenty of room to go deep with your ideas, showcase your innovative solutions and win big!
13
So let’s get creating and make #AccessibleOlli Autonomous For All Of Us! GET STARTED
