Network News

September 2021
Spinal Network's mission is to support the employment and education of individuals with spinal cord injuries/diagnoses by providing the tools and community support to be successful in their work and personal lives.
Greetings!

Lot's going on and coming up. We are now meeting every other Saturday at South Shores Park on Mission Bay at 9:30 for a Walk, Roll & Stroll. The path is paved and fairly flat, it runs right along the bay, just a great way to start off the day and there is great conversation along the way. This event is open to everyone, disabled or abled. For those who wish to join in and have to take Access or some other mode for transport that costs money, get a receipt and we will reimburse you with a Visa gift card or Access coupon. The next date is this coming Saturday. Scroll down a bit for additional information including a map. We gather at the boat launch. Hope to see you there.

Sincerely,

Rick Hayden
Executive Director
Walk, Roll & Stroll at Mission Beach
What a great time walking, rolling and strolling along the bay at South Shores Park. The weather was great even though there was rain happening all around us. We decided that this needs to be a regular gig, so every other Saturday beginning September 18th at 9:30, we will be back at it, enjoying the fresh air, getting a little exercise (we travel at a slow pace) and great conversation. We meet over by the restrooms and boat launch.

This is open to everyone!

Hope to see you there on Sept. 18th
Congratulations to All of the Paralympic Athletes
The Tokyo Games featured more than 4,500 athletes competing in 22 different sports. Team USA consists of 234 athletes, plus six sighted guides. That group includes 129 returning Paralympians, with four of them making their sixth appearance: Lisa Czechowski (goalball), Tahl Leibovitz (table tennis), Tatyana McFadden (track and field) and Asya Miller (goalball).

Streaming coverage was available through both cable networks and streaming services for the first time.
  • According to the National Spinal Cord Injury Statistical Center’s “Facts and Figures at a Glance 2021”, there are approximately 296,000 Americans currently living with SCI, and about 17,900 new SCI cases each year.
  • About 78% of new SCI cases are male. The average age at injury has increased from 29 years during the 1970s to 43 since 2015.
  • Vehicle crashes are the most recent leading cause of injury, closely followed by falls; acts of violence (primarily gunshot wounds); and sports/recreation activities are also relatively common causes.
  • Lengths of stay in the hospital acute care unit have declined from 24 days in the 1970s to 11 days recently. Rehabilitation lengths of stay have also declined from 98 days in the 1970s to 31 days recently.
  • Since 2015, less than 1% of persons experience complete neurological recovery by the time of hospital discharge.
  • Since 2015, about 30% of persons with SCI are re-hospitalized one or more times during any given year following injury. Among those re-hospitalized, the length of hospital stay averages about 18 days.
  • The average remaining years of life for persons with SCI have not improved since the 1980s and remain significantly below life expectancies of persons without SCI.
Coming Soon
Assistive Technology Loan Closet
Spinal Network's Assistive Technology Loan Closet will become a reality and sooner than we anticipated. We just received word that our request for funding had been approved. The goal? Provide the means by which an individual can access the devices necessary to attend college or enter the workplace. If you have a need and you are interested, send me an email so that I can keep you updated on the program launch.
The next few weeks are crunch time in the fight to improve caregiving in America, and we need to keep the pressure on our members of Congress to support our community's needs.

Funding for Medicaid home and community-based services (HCBS), which helps to keep people with disabilities in our own homes and part of our communities, has long been neglected. People get stuck on waiting lists for years. The direct care workforce is underpaid. Family members are often forced to become unpaid caregivers for their loved ones.
The Biden administration, as part of its American Jobs Plan, proposed an investment of $400 billion over 10 years in Medicaid HCBS. This figure reflects the truly massive need and the historic underfunding of these services. Congress has taken the President's directive and turned it into legislation called the Better Care Better Jobs Act (H.R. 4131/S. 2210).

This legislation would:
  • Expand access to Medicaid HCBS services by increasing funding to state Medicaid programs and requiring coverage of personal care services.
  • Increase payments to the direct care workforce to raise wages, increase recruitment and retention of caregivers, and create training opportunities for the direct care workforce as well as family caregivers.
  • Encourage states to build direct care workforce registries to help connect people with disabilities and older adults with caregivers looking for work.
  • Permanently reauthorize the Money Follows the Person program, which helps people residing in institutional settings successfully transition back into the community.
  • Permanently reauthorize protections that keep spouses of Medicaid HCBS recipients from becoming impoverished.

It is essential that this legislation, which is currently being considered as part of a larger package of physical and human infrastructure funding, be funded at the $400 billion figure proposed by the President.

Please tell your members of Congress to support fully funding this legislation today!
United Spinal Association is celebrating their 75th Anniversary and Doing It in a Big Way
United Spinal’s year-long celebration of our 75th Anniversary will highlight compelling stories of dedicated members, advocates and disability trailblazers that have supported our vision of building an inclusive world that welcomes wheelchair users and all people with disabilities.

United Spinal Association is pleased to announce that we will be hosting our virtual 75th Anniversary Gala on November 10, 2021 at 6pm EST and we invite you to be our guest as we celebrate Building an Inclusive World!

Registration is free! Please click on the Eventbrite link here to register: https://unitedspinal75thanniversarygala.eventbrite.com

Be sure to visit our Member Prize Zone and enter to win great prizes!
Access Trax
 Local Accessibility Startup Aims to Make the Outdoors Barrier-Free

Access Trax is a San-Diego based startup led by an occupational therapist and inspired by adaptive surfers. The company is on a mission to make the outdoors and recreation more accessible to the millions of people around the world who use mobility devices. Access Trax makes a lightweight, portable, durable access mat that can be deployed over terrain like sand, grass and gravel in a matter of seconds. In this video, adaptive athlete Channing shares her thoughts on using the Access Trax! The firm and stable surface feels much like a sidewalk and is easy to set up by only one person. What makes the 3ft x 3ft mats so unique is that when they're connected together by removable hinges, they accordion fold and stack flat. Families can take them on an airplane for accessible vacations or use them around their yard, for access on-demand.

Access Trax is proud to be involved in the local and national adaptive sports community. Two exciting upcoming events in Southern California include the US Open Adaptive Surfing Championships in Oceanside September 9-12th and the Challenged Athletes Foundation Community Challenge Weekend October 22-24. Access Trax is a sponsor of both events this year, providing an accessible pathway for activities at the beach and on grass. Both events are sure to be action packed so be sure to mark your calendar! The Community Challenge also offers virtual events so you can join from afar.

If you'd like to learn more about Access Trax and what they're doing in the community, you can sign up for their e-newsletter or send CEO Kelly an email anytime. 
Contento NYC
A Completely Accessible Dining Experience
From our first planning stage to our grand opening, we wanted Contento to be a space for everyone. Contento is truly a space for all people to come in and feel like they are at home. We want NO person to feel left out of the dining experience. #ContentoTogether

Watch the video below to hear what George Gallego, co-owner, has to say.
Grassroots Advocacy
United Spinal is looking for more grassroots advocates in California. Will you help us by signing up as an advocate today?

The goal of our District Mobilization program is to register enough advocates in all 435 Congressional districts to ensure that whenever United Spinal needs to reach out to Congress, every single Representative and Senator knows that we have broad support in the communities they represent.

We currently have nearly 800 registered United Spinal advocates across all 50 states, and we have 59 registered advocates in California. However, we are currently looking for our first advocate to register in 18 of California's 53 Congressional districts, including most of the districts located in Los Angeles County, but also in San Diego County, Imperial County, Riverside County, Orange County, the Central Valley, the Bay Area, and northeast California. No matter where you live, we're looking for more advocates to join us.
Our grassroots advocates are at the center of everything we do, and we need as many people as possible to get engaged as we push for policies that help our community on issues like caregiving, transportation, rehab, telehealth, employment, and more.

Take a look at our current advocate map. Will you help us paint the map orange by registering as a United Spinal advocate today?
If you register as an advocate with United Spinal, we aren't looking for a big time commitment. Here's what we're looking for from our registered advocates:

  1. When United Spinal sends out action alert emails, take a minute to click on the “Take Action” link, make sure your name, address, and email address are entered correctly, and click the “Send Message” button.
  2. If you feel comfortable, share the link to our action alert with family, friends, or your networks on social media. You are not required to do this, but it helps to amplify our message.
  3. On occasion, United Spinal might reach out to you if we have a meeting scheduled with your Representative or Senator. It is entirely up to you if you want to participate.

That's it! Of course, we encourage all of our advocates to get involved as much as they are able.

Finally, as part of our 75th Anniversary Advocacy Challenge, if you register as an advocate, you will be entered for a chance to win a substantial monetary prize, which will be awarded towards the end of the year.

So if you can, please register as a United Spinal advocate today, join nearly 800 advocates all across the country who have already signed up, and help us build an inclusive world together.

Thanks,

Steve Lieberman
Director, Policy & Advocacy, United Spinal Association
Would You Be interested in a Support Group for Families/Caregivers
If you are or if you know of someone who could benefit from this group, please email me, we will look to hold this group in soon and we'd like to know what days or times work best.
Wheelchair Dance Organization is Offering
Free Dance Lessons
Masks Required

Click to register:

 
Walk-in registration also available at the door
For questions call us at: (858) 573-1571
Peer Mentor Training and Program Update
from United Spinal
We will host a virtual peer mentor training in collaboration with United Spinal's Lindsey Elliott. This training will be held in either December or January depending on her availability. It will be in two parts, the first is an online course that should take about 1 hour. The second part will be live on zoom and run approximately 3 - 3.5 hours. This will not only be a valuable resource for new mentors but a great refresher course for those of us that have been trained in the past. Check future newsletters for the date and time.

United Spinal will be introducing a peer mentor newsletter in the upcoming months, if interested and you would like to be on the list to receive it, shoot me an email.
Looking for a Peer Mentor?
Do You Want to Become a Peer Mentor?
Spinal Network has eleven certified peer mentors available to meet, listen, share their experiences as well as sharing resources and services. Whether your newly injured/diagnosed or you've been wheeling this earth for a while, or maybe your a friend, family member or rehab professional, reach out, we're here for you.

Get Your Free Paralysis Resource Guide
The Paralysis Resource Guide is a one-stop handbook to help people with paralysis and their families or caregivers navigate the world of paralysis. The book is written for consumers. The topics covered include the various causes of paralysis (stroke, spinal cord injury, spina bifida, etc.) as well as various secondary conditions caused by paralysis (pain, spasticity, bladder management, etc.). Other chapters cover topics that help one live successfully with paralysis including travel, recreation and sports, home modification, signing up for federal benefits, and wheelchair selection. There are also chapters on resources for children living with paralysis, disabled veterans and caregivers.
Cure Medical Donates 10% of Sales to SCI Research
Cure Medical endeavors to design innovative products and packaging with features that may improve quality of life. For example, the Cure Ultra® for men and women offers benefits we can all appreciate:
'Green friendly'  •  Minimal packaging is better for the environment and contributes to a more sustainable future.
Goodwill  •  Cure Medical supports medical research. 

The Cure Ultra® supports an active lifestyle and offers catheter users additional high value benefits, such as:
Convenience  •  Pre-lubricated with gel for fast, clean use without mess. Additionally, the Cure Ultra® is significantly lighter weight than a hydrophilic alternative.
Discreet Portability  •  The attractive, flexible package with kink-resistant catheter can easily be transported in small spaces.
Peace of Mind   •  The Cure Ultra® features polished eyelets for comfort and is not made with DEHP/DINP, BPA, or NR-Latex for safety.
Spinal Network
a chapter of United Spinal Association
 
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