UsersFirst–The Vision is Becoming a Reality

Happy New Year!

It seems like people and organizations are reviewing the past year: the successes, challenges, the amazing people you met, the goals you reached and the ones where you fell short. Overall, an insightful process, and, a powerful process if you are able to act accordingly on the feedback. Below is this very process for UsersFirst–a movement that belongs to you. It would have fizzled long ago if not for your interest and active support. Please take a moment to review and plan with us.

What happened in 2011
For UsersFirst, 2011 was a year of transformative growth. In April, UsersFirst became a program of United Spinal Association, a consumer organization, who, since 1946, has pioneered some of the most historic events and legislation of the Disability Movement.

➢ The UsersFirst mission remains intact with full support from United Spinal Association:
UsersFirst advocates for greater access to appropriate wheelchairs, mobility scooters and seating systems for people with disabilities. UsersFirst rejects the one-size-fits-all idea of mobility and challenges discriminatory policies that deprive Americans of independence and freedom. UsersFirst focuses on the following goals:

1. Enroll all people who believe Americans should have access to
appropriate wheeled mobility.
2. Offer education and guidance through the service delivery process
of wheeled mobility.
3. Challenge discriminatory policies.

UsersFirst teamed up with Ms. Wheelchair America (MWA) to host a webinar series to enhance communication, peer-mentoring and advocacy skills.

➢ There are now approximately 3,000 registrants of UsersFirst. It is a powerful list, these are people who state they are advocates and are willing to take action.

➢ UsersFirst had a busy schedule in 2011 including the following:

o Attended and presented at all of the Abilities Expos.
o Participated and presented at the CELA (Continuing Education and Legislative Advocacy Conference) and visited with members of congress.
o Presented to over 1,800 people at the International Seating Symposium.
o Kept in touch with over 1,300 people on social media with an average weekly following of 700.
o Became a program of United Spinal Association.
o Was invited to present at multiple consumer-based conferences.
o Participated in the Heartland Conference.
o Attended and presented at the Independence Expo in Florida.
o Published various articles in industry magazines (New Mobility, Mobility Management, HME News, OT Practice).
o Three UsersFirst Action Groups were started (chapter-based) – since April.
o Worked with over 100 consumers providing guidance through the wheelchair process.
o Conducted four empowerment/advocacy courses for clinicians.
o Invited to present the UsersFirst model at the European Seating Symposium in Dublin, Ireland.
o Developed an advocacy and leadership training program with Ms. Wheelchair America.
o Attended the NCART (National Coalition for Assistive and Rehab Technology) Medicaid meeting.
o Worked with several third-party payers providing education about the needs of consumers and the necessity of appropriate wheeled mobility and service.

Where We Are as a Community
It is still very difficult to get the best wheelchair to meet your needs. One of the main reasons is that insurance companies, public and private, make more money when they deny products and procedures. And, people who use wheelchairs have historically not spoken out. Like many Americans, maybe we are unaware of bad policies until they hit us right up side the head. For example, when Medicaid decides to “save money” and use only ONE medical equipment company for the entire state! This might not mean much until you pick up the phone to ask for a simple repair on your w/c and find out the closest store is 100 miles from your home. Now what? We receive calls relating to this scenario weekly.

What Still Needs To Be Done?
Change policies that negatively affect wheelchair consumers so people can receive the wheelchair that fits their functional and medical needs.

How?
➢ Contact UsersFirst: We have qualified staff who will speak with you and support you through the process. Additionally, we will keep track of how many Americans are affected by bad policies like this.

What UsersFirst Will Do in 2012
➢ Provide webinars every month on a variety of topics
➢ Distribute brochures and posters upon request
➢ Help-line available for all wheelchair questions at
➢ Develop UF Action Groups and National Spinal Cord Injury chapters throughout the country
➢ On-line wheelchair process guidance through the Mobility Map will be live by February 15, 2012.
➢ Weekly blogs where you will be kept informed about all UF activities and consumer stories – feel free to subscribe feed://www.usersfirst.org/feed/
➢ Presence at many consumer conferences and National Spinal Cord Injury Association chapter gatherings
➢ Attending the CELA conference where the CEO of United Spinal is the Key-note speaker.
➢ Attending United Spinal’s Roll on Capitol Hill, June 25 and 26.
➢ A few other partnerships and programs you will see rolling out in the beginning of 2012 (we can’t tell you everything all in one shot).

Making history together.

What You Can Do To Help Strengthen Your Voice
➢ Be counted and register at www.usersfirst.org
➢ Tell your entire network to register, it is free. This is a way to stay connected to what is happening around the country with individuals striving to create better access to wheelchairs.
➢ Stay connected on Facebook at http://www.facebook.com/UsersFirstAlliance
➢ Be heard and tell us your wheelchair story at www.usersfirst.org under “Users Speak
➢ Be supported and contact us with any wheelchair question at usersfirst@unitedspinal.org
➢ Contact us if you would like to be more involved in a chapter, would like brochures, or need support regarding a limiting policy.

We are excited about the momentum of this movement and invite you to increase your participation.

We have the opportunity to make history together.

A united voice is a strong voice.

Ann Eubank, LMSW, OTR/L, ATP
VP Community Initiatives
UsersFirst, a program of United Spinal Association

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