Our Community News

July 2020
The ADA Turns 30 this Month
What Does the ADA Mean to You?
Share with us what the ADA means to you. What are the positives and negatives, what still needs to happen? We'd love to hear from you.
Spinal Network Virtual Meet & Greet
July 14th and 28th at 12 noon
Join Us, All Are Welcome

Please find the information required to log in further down in this newsletter
Greetings!

It certainly is interesting what good can come out of a situation like the one we are going through right now. In the past the Sharp Rehab group met monthly and Spinal Network had their meet & greets, but we've realized that by collaborating we can offer our members and friends twice the opportunity to get together using a virtual meeting platform like Zoom. It's worked out great and we're having a lot of fun, so much so that when we get through this pandemic, we plan on continuing this wonderful relationship. You'll find the schedule for our meetings a little further down in this newsletter. Some fun stuff coming up.

If anyone needs to find resources or maybe you just want to talk, we have our peer mentors, our board of directors and our advocacy team. Just shoot me an email at rick@spinal-network.org

Nobody needs to be alone during these uncertain times


Sincerely,

Rick Hayden
Executive Director
United Spinal Association is Searching for a CEO/President
The position would require the individual to relocate to New York City where they are headquartered. If you are interested in learning more, click the button to email me and I will send the job description.
During the COVID-19 Pandemic
We Are Providing Additional Services and Resources or maybe you just want to talk with someone.

Contact Information and Resource Links
Bill White 310-770-7503
North County Inland, Escondido to Mira Mesa

Chelle Struve 619-316-3743
North County Coastal, Oceanside to Del Mar

Jim Weber 619-851-8633
East County

Dominick Taitano 619-289-0753
Mission Valley to Del Mar

Ania Flatau 831-224-0006
Mission Valley to Del Mar

Rick Hayden 951-775-2561
West and Southwest Riverside County

Virtual Meet Ups in July
  • Spinal Networks Virtual Meet and Greet is Tuesday, July 14th at 12 noon. Our presenter is Josh Basile who is a practicing attorney, a C-4 quadriplegic and advocate for employment rights for the disability community. Get answers to your questions about whether you can afford to go back to work.
Meeting ID: 944 0309 7461
Password: 467930

  • Spinal Networks Virtual Round Table Discussion and Movie Review on July 28th at 12 noon. This months movie will be "Roll with Me" which is on Netflix.
Meeting ID: 915 2072 1061
Password: 473669


  • Sharps SCI Support Group will be July 6th and 20th from 4:30pm - 6pm.
If you would like more information on this group, please email Richard Green at richard.green@sharp.com
What Movie Would You Like to Review?
The 4th Tuesday of each month we get together on Zoom and review a movie that in some way pertains to our community. Let us know what movie we should check out and join us in a relaxed and informal setting as we share our thoughts.
In the spinal cord injury community, a day doesn’t go by without learning of a new tool, technique or device that has an impact for a certain segment of our population. We recently discovered the concept of “Wearable Therapy” that, according to the company, helps treat the effects of neurological conditions such as disuse muscle atrophy, pain, and spasms in those with SCI. It is the brainchild of AxioBionics founder, Philip Muccio, which uses NMES electrical stimulation to repeatedly contract and relax muscles, which maintains muscle strength. By managing the contractions of the muscles, NMES can also calm erratic muscle spasms and restore a more natural state of relaxation.
One of the company’s first clients was Christopher Reeve. The system can be designed for individuals with paraplegia or complete quadriplegia and is custom-fitted as you will work one-on-one with a specialized trained expert to ensure optimal results. The company does suggest use of this system as soon after an injury as possible. For an evaluation or questions, check out the information on their web site HERE .
Three Questions for Us All
Over this past weekend, I was reflecting on my current situation and realized that I was happy and content. But when I look to the future I thought, would I still be this happy and content a year from now or two years if everything stayed the same. Not quite sure, so I asked myself three questions which I'd like to share with you.

  1. What do I like and dislike about my current situation? I made a list hoping that the scale would be tipping more to the like side. Then its a matter of trying to keep the items on the like side as you move forward and looking to see what you can do about the dislike side. Can you fix things or simply eliminate them.
  2. Where do I want to be in three years? I choose three years but it can be whatever time frame works for you. So knowing where I am right now and where I want to be in three years, I just had to draw the roadmap. What will I need to do to make it happen. It's good to choose small steps because if something isn't happening as it should, it's easier to make the adjustment and get back on track.
  3. Let's jump ahead even further, I chose five years and what I need to do to retire. I made a list and as I wrote down action items, I put a timeline together on when I would like to have each action item completed. Here's an example; I want to have the mortgage on the house paid off by the time I retire. So I have the action item, then I wrote down how I was going to achieve or complete it and then the time frame.
Most of us have some free time right now, so it seemed like a great opportunity to make my way through this little exercise. My roadmap is complete and I'm looking forward to digging in and making it happen. If you have questions or something you'd like to share, I'll be putting this up on the Spinal Network homepage. You can leave a comment or you can also email me. Just hit the button below.

If your plans involve going back to school or looking for employment, let us know how we can help.
Different Types of Employment Opportunities
Which is Right for You?
Working for a private company: These companies tend to have fewer stakeholders to worry about, which means they have more freedom to focus on long-term strategies instead of short-term profits. Privately held businesses may be more willing to consider employee desires when deciding on salary, benefits and work-related duties

Working for the Federal Government: The pros are stability, flexibility, benefits, time off. The cons are slow salary growth, capped earning potential, low levels of control.

Working for a non-profit: The rewards can be many when working for a nonprofit, you get the opportunity to make change and to sometime have a positive impact on peoples lives. Personal skills are often recognized and appreciated. The downside is that there is the constant battle to raise the necessary funds to run the programs and cover operating expenses.Because of this there is a high incidence of burnout.

Working on-site: Studies show there are benefits to working onsite where you are face to face with coworkers and customers. You can see their facial expressions and body language and even though video conferencing is widely used, you will miss some of this due to the limited viewing area. You are more liable to stay focused and on track if you are in an office or work setting. The downside is the commute, lack of flexibility and freedom of schedule.

Working remotely: Some benefits of working remotely are a better work/life balance, more freedom, you are often more productive, you help the company decrease expenses so that they can stay more competitive. There is a downside though, you must be disciplined in your approach as it is all to easy to become distracted and not put the time and effort in that you would if you were working onsite.

Working for yourself (entrepreneur): Since this category is the one that generates the most interest, it will have it's own section right below. This is a great article by chapter member Tami Ridley.
Self Employment and Becoming an Entrepreneur
by Tami Ridley
Self-employment is a solution for the person who wants to be self sufficient, productive and to be able to contribute to the economy but have challenges within the confines of a workplace setting. Issues such as transportation, dependence on caregivers and limiting conditions associated with the disability and perseverance of one’s own health are all qualifiers for choosing to work for yourself and have control over your abilities.

Self-employment is definitely worth exploration and you will find amplitude of great resources for people with disabilities to determine if this type of business organization is for you.

In addition to a productive lifestyle, the pride and fulfillment of owning and operating your own business, you may benefit from self-employment status in controlling your income level and maintaining needed benefits through business expense deductions for disability related work needs that may keep your income low enough for eligibility.

In addition, incentives for working while disabled may offer you some benefits that losing would not be worth being self-employed. One such program that has benefitted me by supplying health coverage for people with disabilities who get jobs is the I HSS Working Disabled 250% program.   Because I require a caregiver, I have been able to pay a monthly premium so that I can still earn money above the eligibility cut-off amount. This premium allows me to be Medi-Cal eligible without a huge share of cost to defray my caregiver and medical expenses.
Are We Really a Community? I Believe So
Is community important? I would have to say very important right now. Spinal Network, like many others is providing resources and services to help you all get through this pandemic safely. Building community is so important, otherwise we have no purpose.So for now let's stay in tough by phone, email, text or virtual get togethers. When it is all said and done, we can resume our activities and ad in a couple of fun outings

So, who makes up a community such as ours? Our community is made up of a diverse group of people from all walks of life. There are those of us with a SCI/D who use wheelchairs for mobility, our friends and family, physical therapists, occupational therapist, recreation therapist, social workers, rehab nurses and anyone who advocates on our behalf. That's quite a powerful group of advocates if I do say so.

What are the benefits of being part of a community such as ours? The most obvious to me is making new friends. Whether we're getting together for a Meet & Greet, an educational workshop or the Interabled Couples group, it's about friendship, socialization, building a support network and being a part of something bigger than ourselves. Another benefit; we always have a good time.

How can we grow our community? Word of mouth is the most powerful, people that come out and hang with us and have a good time will tell someone else and maybe they'll come check us out and have a good time too. The proverbial snowball. Our events draw people to us and so many times, those same people come to a Meet & Greet and before they know it, they're an integral part of this community. It's certainly not lost on us that our friends who are rehab professionals, support us all of the time and every step of the way and we can't thank them enough. Well, we can, by continuing to build this community and providing great opportunities to learn about this new way of life. I want to finish off by saying that Spinal Network is not about exclusivity, it's about inclusivity. So come out and hang with us, we're a pretty fun crowd.
Our Website Has Many Areas of Interest?
Health and Wellness
Nine areas of interesting facts related to SCI/D such as caregivers, managing pain, depression and spasticity.
Peer Mentoring
Requesting a peer mentor or looking to become a peer mentor. The information is right here in one spot. We currently have eleven certified peer mentors.
Employment Preparedness
This is a very important focus for us. Many of us in the disability community want to become gainfully employed. We want off the system and to help others along their journey.
Meet & Greet
Our monthly Meet & Greets are a great way to connect with peers and to build your personal support network. It's also a great way to meet new friends within the SCI/D world.
Interabled Couples Support Group
There are so many untold, beautiful love stories of couples in which one person has a disability and the other person does not. It comes with unique challenges, but with the right support we can happily roll and walk through life together.
Trusted Resource Directory
Finding a trusted resource today is difficult regardless of access to the web. Our directory will be comprised of companies and organizations who offer a quality product or service and have a long history of treating their customers with respect.
Video Gallery
Our helpful video gallery has available to you, a number of videos related to SCI/D. Topics on advocacy, lifestyle, health, employment and more.
Vets First
VetsFirst is a program of  United Spinal Association  that assists veterans and their eligible family members in obtaining the benefits they are entitled to, deserve and need.
Looking for a Certified 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.

During this time of lockdown we will mentor via phone or video chat.

If you'd like to become one of our peer mentors, shoot me an email, click here Rick
Companies You Can Trust
Please take a few minutes to check out our Trusted Resource Directory, a place where you will find product and services from companies that we trust, and who are committed to improving the quality of life for our community.
Spinal Network
a chapter of the United Spinal Association
 
Tel: 951-775-2561
Purcell International Group