In the News
Equipment and Adaptation Program
People with ALS may need extensive medical and communication equipment at some point during their illness. The ALS Association Mid-America Chapter’s Equipment and Adaptation Program provides the following options:
• The evaluation of needs.
• Identification of the best source of recommended devices and adaptations.
• Loan pool of used equipment that can be used if other sources are not available or if there is a delay in receiving equipment.
Our equipment loan pool consists of primarily used and donated equipment. There is no charge for this equipment and you may use it as long as it is needed.
Another resource available to people living with ALS is The Chapter’s Aids for Daily Living (ADL) Kit. Each kit includes several items that are designed to help with compromised fine motor skills. Items in an ADL kit include: Universal Holder, button hook/zipper pull, PenAgain, Kennedy Cup, elastic shoelaces, 2 extra-long straws, lipped plate, Dycem, key turner, comfy grip tablespoon, and a right-angled scoop spoon.
The ALS Association Mid-America Chapter also provides Augmentative Communication Kits to help with communication. The kit includes two resources guides, information on communication apps, as well as a Boogie Board. A Boogie Board can be helpful if you can write, but struggle to speak. The Boogie Board is a lightweight, portable, paperless writing tablet. You can write on the board with a stylus, or you’re finger and erase it by pressing a button.
Please do not hesitate to consult with us about your equipment needs or a possible equipment donation. If you would like to check for the availability of an item or donate equipment to our loan closet, please contact your local Care Services Specialist.
Zoom into Support Groups
Technology is making it possible for all of us to stay connected by utilizing virtual support groups. Have you heard of the video platform, Zoom? Well, now you can “zoom” into contact with others living with ALS from the comfort of your own home.
That’s right! You can wear your fuzzy socks, kick back, and stay connected with your ALS community all at the same time.
Over the last three months our Chapter has offered two of these virtual groups each month; one for caregivers and another for people living with ALS and their caregivers. Many have found it to be helpful.
Recently, Sally, a caregiver attendee from Overland Park, Kansas, said, “Thank you for doing this! With the need for social distancing, it is really great to connect with people who are in the same situation that we are in and not put ourselves at risk”.
If you’re unsure if this type of group will be beneficial to you, please read below for the top 5 reasons that our support group may be of assistance:
• There is “strength in numbers”. Attendees have exchanged contact information and stayed in touch after group for additional support.
• It helps to expand your current support network.
• It’s a great opportunity to learn about resources in the community, become more knowledgeable about equipment, and get advice from others facing the same challenges.
• It’s a time for self-care. We talk about the positives, brainstorm, and share coping skills.
• It’s more comfortable. You get to be in the comfort of your home with your pets and/or loved ones.
If you’re interested in joining our support groups, or for more information, please contact your local Care Services Specialist.
On April 9, the Centers for Medicare and Medicaid Services (CMS) removed noninvasive ventilators (NIV) from the competitive bidding program.
While the CMS guidance indicates COVID-19 as the reason, an intensive lobbying campaign by The ALS Association, the ALS community and partners “primed the pump” for the decision. The ALS Association led the charge on behalf of people living with ALS who would be greatly harmed if access to this life support system and respiratory therapists was restricted based on lowest price bidding.
More than a year ago, The ALS Association locked arms with the American Association for Respiratory Care, the National Association for the Medical Direction of Respiratory Care, and other partners to fight CMS’s effort to force noninvasive ventilators into competitive bidding which would reduce access to noninvasive ventilator and the support of respiratory therapists. The campaign began with calls for CMS to reverse course. When CMS refused to act, The ALS Association and partners introduced the Safeguarding Medicare Access to Respiratory Therapy (SMART) Act (H.R. 4945) last year to leverage pressure from Congress.
Removing NIVs from competitive bidding ensure access to these life sustaining devices for at least the next three years. The ALS Association will continue to advocate with CMS to update coverage policies to ensure access to NIVs and the essential servicing provided by respiratory therapists in the future.
The Innovation Award
The ALS Association has awarded The Mid-America Chapter with its annual Innovation Award for The ALS Telemedicine Treatment Center located in Wichita, Kansas. This prestigious honor recognizes trailblazing chapters who are actively developing and implementing new ideas and/or methods in the delivery of The Association’s mission priorities.
Colleen Wachter, Executive Director of The ALS Association Mid-America Chapter was at The ALS Association’s annual Leadership Conference and accepted the honor on behalf of The Chapter. Of the award she says, “This is a great credit to our Care Services Team, and to Dr. Richard Barohn for his leadership and willingness to champion the project.”
For nearly a decade, Wichita has been a target of The Mid-America Chapter’s effort to start a clinic. The only clinic in the entire state of Kansas was in the Kansas City area and not accessible to many ALS patients due to the long-distance travel; especially as the disease progresses. It wasn’t until early in 2017 the pieces came together and a telemedicine site for ALS clinical care was established.
The Wichita clinic is still in its infancy, but according to Jack Wilson, a Wichita resident who has been battling ALS for more than seven years says, “Oh boy, what a wonderful ALS Clinic visit. Saw the whole team today. They all showed up for just little old me. Even through ice and snow, it was so much easier and quicker than going to KC. I liked how we meet with the doctor via Skype and having the whole team present during the interview. Wichita's clinic rocks...wonderful team.”
The Mid-America Chapter is honored to have received the 2018 Innovation Award and is grateful for the continued support of Dr. Barohn and the community of Wichita for making the dream of a clinic a reality.
In April, The ALS Association Mid-America Chapter launched #StayHometoProtect, a social media campaign to support the ALS community during the COVID-19 stay at home orders. Many people joined in on the fun and shared pictures of themselves staying at home with their family and pets! Below are pictures of team captains, sponsors and Chapter staff who #StayHometoProtect. Thank you to everyone who stayed home to protect individuals living with ALS!