Minnesota Spinal Cord Injury Association

August MNSCIA-GUSU Hangout

8/2/2016

MNSCIA-GUSU hangouts are monthly peer group meetings for those with or caregivers of spinal cord injuries, which are held at 3pm on the first Saturday of every month. (Except on Holidays. Then the meetings will be held on the second Saturday of the month.)

The hangouts are usually held at Courage Kenny Rehabilitation Institution, Golden Valley in the 2nd Floor Board Room. But this month marks the MNSCIA's 6th anniversary as an organization, and therefore we would like to celebrate with all of our hangout friends! So please join us from 3-5pm this Saturday, August 6 at the Yard House in the West End shopping district of St. Louis Park (1665 Park Pl Blvd, St Louis Park, MN 55416). Food and beverages are on us! Hope to see everyone there!

Presented By:

For more information email: [email protected] or [email protected]

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Join us for The ADA at 25: Moving Minnesota Forward!

10/8/2015

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In celebration of the 25th anniversary of the American’s with Disabilities Act, the Minnesota Spinal Cord Injury Association, Minnesota State Council on Disability, and the Minnesota Business Leadership Network are hosting The ADA at 25: Moving Minnesota Forward. This resource and career fair will bring together professionals, employers, and individuals with all types of disabilities. The event will also feature an important employment dialogue.

Learn more and register!

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Rob, Joey, and Thomas Roll on Capitol Hill!

6/15/2015

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My name is Joey Carlson and I serve on the Minnesota Spinal Cord Injury Association board of directors. I had the pleasure of joining Rob Wudlick and Thomas Cloyd at this year's Roll on Capitol Hill (ROCH). We met with legislators, learned a lot, and made some great connections!

I wish every single one of our members could have been on Capitol Hill with us. But since a lot of you couldn't make it, here is a great recap and a few thoughts on this year's festivities.

Rob, Thomas, and Joey with Amy Klobuchar

Rob Wudlick’s Roll on Capitol Hill 2015 Experience and Summary

This year's Roll on Capitol Hill (ROCH), presented by United Spinal Association, was a great opportunity to build effective advocacy skills, as well as help those in wheelchairs get more of what they need from the government. Three policies were the priority for this year's ROCH: Complex Rehabilitation Technology, a Safe Streets Act, and maintaining and improving Medicare and Medicaid benefits for those with disabilities. Another personal focus of mine was to increase funding levels for the National Institution of Health and ask for policy reform for medical research.

Rob, Joey, Thomas, and Elizabeth (Thomas's sister) enjoying Washington D.C.

The Complex Rehabilitation Technology Act (HR. 1516, S.1013) (CRT) is a very important issue which affects almost everyone who spends a lot of time in a wheelchair. I even had the honor to talk about this bill as a consumer on a panel during the conference. Several years ago it was easy to get insurance approval for custom wheelchairs. Then the government cracked down on several suppliers who were taking advantage of the system. Since then it has become increasingly difficult for therapists and doctors to get wheelchairs for their patients who need them. This bill will create insurance codes for Medicare (the golden standard of healthcare insurance) which will make it easier to approve and deliver these custom wheelchairs. The estimated cost of this bill is around $5.7 million per year, which is pocket change at the federal level and doesn't take into account preventive maintenance for people who get skin breakdown if they are put into the wrong chair or given substandard equipment because they don't have access to anything better.

Joey and Thomas watch as Rob participates in a panel on the CRT bill

The Safe Streets Act (HR 2071) sets standards for curb cuts in sidewalks and other policy standards that ensure pedestrian, bicycles, and wheelchairs have safer access around sidewalks and streets.

Of course it is important to ensure that Medicare and Medicaid rights are protected and improved for those with disabilities. This is the lifeblood of the majority of the community living with disabilities. With many states having successful custom state Medicaid programs, United Spinal recognizes the need for expansion and flexibility of these state programs that work with Medicare.

Medical research for functional recovery is very important for myself and many others with spinal cord injuries (SCI). Not having the freedom to live independently and managing serious health problems associated with SCI have are devastating to my quality of life. There are several bills alive in congress which will help those with SCI’s regain function and improve their health through medical technological breakthroughs.

The 21st Century Cures Act (HR. 6) has many policy improvements that will make it easier for research to pass through the research approval pipeline. There is also legislation which returns NIH funding to normal levels. This is incredibly important since appropriations for SCI research dropped from $94 million to $80 million in the last year. Another bill that would help coordinate and streamline medical research is the Enhancing the Stature and Visibility of Medical Rehabilitation Research at NIH Act (HR. 1469, S. 800). One more helpful bill for research innovations is the Regenerate Medicine Promotions Act of 2014 (HR. 4494, S. 2126).

A few thoughts from Thomas on ROCH 2015

Thomas and his sister with Al Franken

Last week I had the Great opportunity to represent the Minnesota Spinal Cord Injury Association at United Spinal’s Roll on Capital Hill (ROCH) in our country’s capital. I was joined by Joey Carlson and Rob Wudlick . Rob already wrote a most eloquent and informative post about the goings-on at this conference. I am sure that many of you dislike redundancy as much as I, so, I will only augment one aspect of our trip Rob briefly touched on. We are our own advocates.

All the steep curb cutouts, the hand burning declines in the capital tunnels, and even that awkward dance when there’s too many wheelchairs in a congress persons office are made worthwhile knowing we affected change on a national level. After over 100 SCI advocates met with their Senators and Representatives, more than 75 new legislators declared their support for the CRT bill (Custom Rehabilitation Technologies – see Rob’s post for details). I don’t know the breakdown between the House and Senate, but those numbers are significant. That is tangible proof that our Government will listen, we just need to get there and say something. That is where you, me, her, him, step in. We are always moving forward but going to an event such as ROCH is an energetic reminder that we have the power. This is the message I want to convey to those who were not able to come to Washington DC, we control our destinies.

As you can sense, I am ecstatic to see federal level Government being responsive to our needs. Add on the dedication of our larger spinal cord injured community and I am more hopeful now than I have been a long while.

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Attend Courage Kenny Grad School

12/14/2014

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The Courage Kenny Institute has some exciting sessions of its grad school coming up. The grad school is an education series for people with a spinal cord injury or dysfunction, their families, and care providers. It provides a bimonthly forum for exploring ongoing issues along with identifying networking opportunities in the community. Check out the details below.

After Care Resource Guide for Fitness and Wellness
Thursday, March 20, 1:30-3 p.m.
Abbott Northwestern Hospital, Room E1220

Join Allina Health’s Stacy Shamblott of SHARE (Sports, Health, Activity, Recreation and Exercise) for a discussion of the wealth of fitness and wellness resources available in the community. Come prepared to discuss and learn about the many options you have to get active this spring and summer.

Care and Feeding of Your Personal Care Attendant
Thursday, May 22, 6:30-8 p.m.
Golden Valley Campus, Room 292

Jim Hanson, social worker, discusses the ins and outs of personal care attendants. Hanson walks you through a needs assessment and checklist covering your essential care needs. This session also covers funding options, and hiring and supervising your PCA. Come prepared to learn how to write a job description, recruit, interview and check references, as well as work with local PCA agencies. Get tips for how to keep your PCA relationship healthy, how to deal with conflict, and how to manage and report abuse and fire a PCA.

REGISTRATION
Each 90-minute session is free, but registration is required by calling 612-863-7306.

MORE INFORMATION
For more information, call 612-863-3201 or visit allinahealth.org/couragekenny

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Courage Kenny Rehabilitation Institute’s ABLE expansion will make it largest in nation

11/11/2014

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The Activity-Based Locomotor Exercise (ABLE) program at Courage Kenny Rehabilitation Institute is planning its expansion for completion mid-2015. ABLE is one of six Community and Fitness Facilities, nationwide, that are part the Christopher and Dana Reeve Foundation NeuroRecovery Network. ABLE has been serving clients at the Golden Valley location since 2010. Demand for use of the body weight supported treadmill system has demonstrated the need for installation of a second TheraStride. The expansion will establish the Institute’s ABLE program as the largest in the country, meeting the demand for service while more than doubling the amount of data collected for the Network’s research study of the impact of locomotor exercise on the brain and muscles.

With this addition, the fitness center and ABLE space will be in a newly remodeled 14,000 square foot area. The space will also have a fitness studio for adapted yoga, Tai Chi and other classes, as well as improved space for massage and acupuncture services.

Emerging scientific research shows that nerves are alive and can often be activated through intensive fitness activities. In partnership with the Christopher and Dana Reeve Foundation’s NeuroRecovery Network, ABLE is a cutting-edge intensive fitness program for people with paralysis and other neurological conditions including stroke. Participants have reported:

·       increased strength, function and independence

·       reduced pain

·       improved health and quality of life.

The program offers intensive, activity-based guided exercise (strengthening and cardiovascular exercise), functional electrical stimulation (FES) cycling and locomotor training. Please contact [email protected] for information on how to access services now.

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Rob rolls on Capitol Hill

7/20/2014

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MNSCIA member, Rob Wudlick, recently represented Minnesota at the 2014 Roll on Capitol Hill in Washington, DC. Here are his thoughts on the important event:

Public policy affects the lives of disabled more than most populations in our society. Since my injury, three years ago, I have been actively working in Minnesota to improve spinal cord injury research and access to therapy and fitness for the disabled through public policy. This spring, the Minnesota Spinal Cord Injury Association invited me to attend United Spinal Association's 2014 Roll On Capitol Hill, a gathering of those with spinal disorders who are interested in government laws that affect those with spinal disorders.

Meeting many new folks from across the nation representing their local chapters of the NSCIA was encouraging and insightful to see what different groups are doing in their communities, from having monthly lectures to adaptive sports equipment rentals. Learning the different levels of services from state to state and the challenges that some face, was also interesting.

Listening to the guest speakers describe the bills they care about and represent was extremely eye opening. From the ABLE Act, that allows for more savings for education, transportation, and medicine for SSD receivers, to the energetic League of Bicyclists, promoting the Bike & Pedestrian Safety Act, which sets national standards for sidewalk curb cuts, no stairs on paths, and trails that connect, was informative and motivating.

Tuesday, we hopped on the Metro, DC's subway system, and surfaced a few blocks from the Nation's Capital. With seven visits to Representatives and Senators in one day, each meeting on opposite sides of the Capital, about a mile apart, we were in a constant scurry finding our way through the labyrinth of tunnels and trains under the Capital. While describing the challenges of living as a quadriplegic, one could realize that our able bodied representatives and aides had no idea of pressure sores, bladder issues, transportation needs, and other problems that affect our daily lives. Seeing the compassion and change of heart come out from their eyes and realizing the next time they look at someone in a wheelchair or a bill that affects the disabled they will have more knowledge and understanding of the policies they enact.

This conference opened my eyes to the needs and political headway being done for those who live with spinal cord disorders in our nation. Meeting new friends and acquaintances from across our country was a great experience. After several very encouraging visits to legislative offices it really feels like one can made a difference. Politicians from both sides of the aisle want common sense practical legislation that helps those who need it most. However, it's important to get your voice out, because in a political climate where budget cuts are being made it's really easy to make small changes in a big system that politicians may not be aware of that affect many of those who need it most. It will be interesting to see what policy changes will happen in the next year and exciting to attend next year's 'Roll on Capital Hill'.

The Issues:

Complex Rehabilitation Technology Bill: As a consumer I was not aware of a lot of care issues that have a giant impact on those who need special assistance. Over the past few years the Complex Rehabilitation Technology Bill has made some headway. By creating specific insurance codes for advanced wheelchairs, about 8% of all chairs, many of which the chronically disabled use, this bill will make it faster and easier for therapists and insurers to provide specialized wheelchairs and equipment for those who need it. This bill struck a resonate chord with me as it allows for preventative measures. When I first suffered my injury I was given an inadequate seat cushion that could only be upgraded until I developed a pressure sore that took three weeks to heal, this bill will change that.
The ABLE Act: This act will make it easier for those who are on Social Security Disability benefits to save more funds for education, transportation, and medical supplies. This act will also make it easier for those on SSD benefits to transition back to work.
The Bicycle & Pedestrian Safety Act: When a bunch of athletic energetic jumpy ladies promoting by circle safety show up at a spinal cord injury convention, one may wonder why they are there. Promoting The Bicycle & Pedestrian Safety Act goes hand in hand with handicap safety on the streets. By setting minimum standards, such as curb ramps, trails and sidewalks that connect, and eliminating stairs on sidewalks for federally funded trails, sidewalks, and bike lanes it will open more safe access for those with mobility issues.
Fitness Funding: Fitness has been a major focus of my work over the past few years. Being a participant in the ABLE program at Courage Kenny Rehabilitation Institute, part of the Neurorecovery Network, Christopher and Dana Reeves Foundation has given me the experience to understand the challenges that disabled folks come by when trying to gain access to therapy and fitness. Creating insurance codes for advanced therapy and fitness and possibly creating a program for those with special needs would improve well being for many lives and lower healthcare costs.
National Institute of Health's priority disease research list: Including spinal cord injury on the National Institute of Health's priority disease research list will open more funds and expedite research for restorative treatments. These actions can improve quality of life for many. By increasing the $94 million appropriated by the NIH out of a $30.3 billion annual budget this will motivate more scientists to enter the field of spinal cord neuroregeneration, alleviate budget cuts to existing labs, and provide funding so meaningful clinical trials can actually happen.

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MNSCIA Board Member Kurt Wiger Receives Diversity Award

2/9/2014

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Congratulations Kurt on your well deserved honor!

Minnesota Spinal Cord Injury Association (MNSCIA) board member, Kurt Wiger, will be honored at the 26th annual Forum on Workplace Inclusion, the nation’s leading conference on diversity and inclusion, which will take place March 18-20 at the Minneapolis Convention Center.

Kurt will be presented with this year’s Friend of the Forum Award. For almost eight years he has been active with the forum’s program and health care track committees. He has volunteered with logistics and hospitality, and has been a ceaseless advocate of the conference.

The Diversity Awards are given to individuals who show exemplary effort in addressing workplace diversity issues. Recipients will be recognized during a special luncheon on Thursday, March 20, at the Minneapolis Convention Center.

Kurt has worked in the field of disabilities for over 30 years. He has held several positions at the Courage Kenny Institute including 15 years as the Admissions Coordinator and most recently as Coordinator of Volunteers and Interns where he works directly with students entering the medical field. He is also co-founder of the MNSCIA.

Learn more:

MNSCIA: www.mnsci.org

Forum on Workplace Inclusion: http://www.stthomas.edu/mcf

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The MNSCIA Featured in Life in Action

12/20/2013

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This fall the MNSCIA did a number of unique things at a local level to raise awareness about SCI that ultimately caught the National Spinal Cord Injury Association's attention. They were so impressed with our efforts, that the editor of "Life in Action" magazine--the NSCIA and United Spinal Association's national publication--asked us to contribute an article to their first ever "Chapter Check-In" feature. We are thrilled to finally share it with everyone!

Check out page 11 to see what the buzz is all about!

life_in_action_winter_2013.pdf
File Size:	15276 kb
File Type:	pdf

Download File

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The MNSCIA welcomes Eric LeGrand

11/18/2013

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The Minnesota Spinal Cord Injury Association (MNSCIA) was excited to welcome former Rutgers football player Eric LeGrand to Minnesota this week.

On November 13, the MNSCIA co-hosted an event that featured a presentation by Eric. MNSCIA board member Dr. Kareen Velez, concluded the event with a question and answer session between Eric Legrand and audience members.

The following night, the MNSCIA board was invited to a gala with pain management professionals put on by Medical Pain Clinics (MAPS) and Pfizer. The gala featured a presentation by Eric LeGrand and a special guest appearance by Jack Jablonski.

See photos of both events at facebook.com/mnscia

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Join us for the MNSCIA Membership Kickoff!

10/1/2013

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Are you ready for some football... and fun?
The Minnesota Spinal Cord Injury Association (MNSCIA) Member Kickoff is Coming!

Saturday, October 5
2:00-4:00 p.m.
Bunker Hills Activity Center
550 Bunker Lake Blvd. NW
Andover, MN 55304

Wear your favorite team gear and help kick off a new era for the MNSCIA!

Come hungry—plenty of food.
Come for prizes—raffle includes a $500 gift card.
Come for the fun—games for kids.
Come on time—First 40 get free wheelchair backpacks.
Come for football! If your a fan, we'll have NCAA football. If your not a fan, we've got a lot more fun stuff.
Get involved—learn how you get can improve the lives of those with spinal cord injuries.

Bring your friends and family!
It's indoors,so you'll have fun rain or shine.

Exhibitors include: MNSCIA, Coloplast, and Allina
Reply to this message to RSVP.

For more information go to www.mnscia.org/blog or see attached flyer

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<<Previous

August MNSCIA-GUSU Hangout

Join us for The ADA at 25: Moving Minnesota Forward!

Rob, Joey, and Thomas Roll on Capitol Hill!

Rob Wudlick’s Roll on Capitol Hill 2015 Experience and Summary

A few thoughts from Thomas on ROCH 2015

Attend Courage Kenny Grad School

Courage Kenny Rehabilitation Institute’s ABLE expansion will make it largest in nation

Rob rolls on Capitol Hill

MNSCIA Board Member Kurt Wiger Receives Diversity Award

The MNSCIA Featured in Life in Action

The MNSCIA welcomes Eric LeGrand

Join us for the MNSCIA Membership Kickoff!

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