In partnership with Team Gleason, the Human Development Center hosted a conference addressing communication strategies for people with Amyotrophic Lateral Sclerosis (ALS). The two-day conference called ALS, Communication and All That Jazz took place June 9 and 10, 2017, at the LSU Health New Orleans’ Human Development Center, 411 South Prieur Street. About 120 people were in attendance in what is hoped to be the first annual conference. The feedback from the participants was overwhelming positive:
- “Wonderful conference.” “Fantastic.” “All speakers were amazing!” “Great conference, very worthwhile.” “Please make it annual.”
- “One of the best conferences I have ever attended for ALS. All speakers were very knowledgeable and engaging.”
- “This conference was an excellent value for the speakers and CEUs provided. Thank you so much for initiating it. I would definitely return!”
- “The pALS panel was very powerful and an eye-opening look into life with ALS for the individual as well as their care-takers.”
- “Seeing ALS patients for the first time reminded me why I am doing the research I’m doing.”
- “Excellent. Thank you for this affordable, content-rich opportunity.”
During the conference, national experts addressed subjects including no-tech, low-tech and high-tech augmentative communication strategies, pro-active message banking, strategies to enhance speech clarity, voice banking, partner-assisted scanning and laser pointer with low-tech boards, assessment and feature matching for speech-generating technology, successful use of computer/AAC device strategies, as well as environmental controls and home automation systems for all budgets. Attendees also participated in a hands-on demo and practice with communication technologies. The presenters included John Costello and Peggy Dellea from Boston Children’s Hospital, Lisa Bardach from ALS of Michigan, and Team Gleason’s Austin Edenfield. The highlight of the conference was a panel discussion with six people with ALS (pALS) and their primary caregivers (cALS) who offered their insights on communication strategies. Links to the agenda and associated presentations, handouts and videos can be found here.
At the close of the first pilot year, the Louisiana project looks back and celebrates its successes. Over the last year, the project offered four Cooking Matters courses that taught individuals with disabilities and their family members and friends the skills and confidence to eat, cook and shop healthfully on a budget. These six-week courses engaged more than 70 participants in hands-on nutrition and culinary instruction where they chopped, mixed and stirred their way to healthier diets. Additionally, our project selected and trained seven Deputy Nutrition Ambassadors, including individuals both with and without disabilities, to act as nutrition instructors and advocates in their communities. Response to the program has been overwhelmingly positive and many participants report improvements in dietary behaviors even six to eight weeks after the end of Cooking Matters classes. Cooking Matters is a program of Share Our Strength, a national organization working to end childhood hunger in the United States, and more information can be found at cookingsmatter.org.
In the coming year, the Louisiana project is excited to expand its programming to reach even more people across the state of Louisiana. The project will pilot single day nutrition education events, in addition to the six-week Cooking Matters courses, where participants will learn how to integrate more fruits and vegetables into their diets. The project also looks forward to selecting and welcoming its new Deputies for the coming year.
In partnership with Data-Based Conferences, the Human Development Center hosted its third annual institute on Response to Intervention/Multi-tiered Systems of Support (RtI/MTSS) on April 27 and 28. This year’s conference included previous topic strands of RtI/MTSS development and implementation, leadership, behavior support for students, and literacy while adding topic strands for mathematics and autism spectrum disorder. HDC welcomed over 200 participants from several states and US territories including Guam for this year’s conference. Feedback from conference attendees was overwhelmingly positive and we are already planning for next year’s conference. Conference information can be found at http://dbcconferences.net/ and handouts and resources from individual sessions from the conference can be accessed at http://www.markshinn.org/resources-downloads.html.
LSU Health New Orleans School of Allied Health Professions hosted the Geaux, Baby, Geaux! Workshop on April 21, 2017, from 7:30 a.m. – 4:00 p.m. at its Human Development Center, 411 South Prieur Street. In addition to training for professionals who work with low-mobility children, teams of participants modified seating, steering and drive systems to prepare a ride-on car for a child with mobility needs. Ten adapted ride-on cars were provided for kids with disabilities who could then use them for their own active mobility.
The Restore Louisiana Homeowner Assistance Program survey opened to all homeowners affected by the March and August 2016 floods. This marks the beginning of the homeowner assistance program through which the state will help flooded homeowners with rebuilding assistance and some reimbursement, once the federal government makes the funds Congress has appropriated to Louisiana available to the state to spend.
The initial survey will be available for all flood-impacted homeowners to take on the restore.la.gov website beginning at 7 a.m. Monday, April 10. This will be the first step for all homeowners who want to apply for recovery assistance. Homeowners can also choose to fill out the survey using a phone number that will be posted on restore.la.gov tomorrow morning. (Please note that this number – 1-866-735-2001 – will be activated beginning 7 a.m. Monday, April 10.) The survey will be available for a period of time. It does not have to be completed on the opening date, and eligibility is not determined on a first-come-first-serve basis.
All 12 participants of the recently completed Orleans Parish Cooking Matters class (including individuals with intellectual and developmental disabilities and their friends, family, and support staff) attended the potluck to show off their cooking skills by bringing healthy dishes to share. Participants reflecting on their experience had exceptionally positive comments, mentioning improved behavior changes such as increased cooking at home, reading nutrition labels more often, and making smarter choices when eating out. Participants were eager to share what they had learned with others and expressed interest in working with our project to start Cooking Matters classes at their churches and community organizations. Two new Cooking Matters classes for individuals with intellectual and developmental disabilities and their friends, family, and support staff began in March. The Louisiana nutrition intern Colleen proved to be an excellent instructor during her first two classes by using creative visuals to support learning.
Additionally, the Louisiana Nutrition Ambassador spoke at a two-parish Community Services Meeting in March. Provider organizations showed an overwhelming interest in the program and the state Ambassador has begun communicating with multiple organizations about starting Cooking Matters classes for the clients they serve.
The Human Development Center at LSU Health New Orleans School of Allied Health Professions will host a conference addressing communication strategies for people with Amyotrophic Lateral Sclerosis (ALS). The two-day conference held in partnership with Team Gleason, called ALS, Communication and All That Jazz, will take place June 9 and 10, 2017, at LSU Health New Orleans’ Human Development Center, 411 South Prieur Street.
The conference is intended for allied health and other health professionals caring for people with ALS, people with ALS and family members, and any other person interested in participating. National experts will address subjects including no-tech, low-tech and high-tech augmentative communication strategies, pro-active message banking, strategies to enhance speech clarity, voice banking, partner-assisted scanning and laser pointer with low-tech boards, assessment and feature matching for speech-generating technology, successful use of computer/AAC device strategies, as well as environmental controls and home automation systems for all budgets. Attendees will participate in a hands-on demo and practice with communication technologies.
As ALS progresses, motor control and speech production may decline. Movement of the arms and legs, and use of speech are severely compromised. People with ALS leave their jobs, give up use of the computer and accept assistance with even simple tasks as their abilities to engage in these activities are compromised. Most people are unaware of the broad range of adaptations and devices designed to compensate for decreased motor control. Many patients can benefit from use of a head mouse, arm supports, or voice recognition software for example. Many people with ALS can continue doing certain tasks, just in a different way. The program can be found here. Links to the presentations, handouts and videos (videos available only after the conference to conference attendees) can be found here.
The registration fee is $60 for the two-day conference. The registration fee includes all conference sessions, breakfast and lunch on both days of the conference.
- Friday, June 09, 2017, 8:15 AM–3:00 PM
- Saturday, June 10, 2017, 8:30 AM–3:00 PM
WHERE: HDC, 411 South Prieur Street, New Orleans, LA 70112
CLICK HERE TO REGISTER
Louisiana is preparing to offer two more Cooking Matters classes this spring. A nutrition student, Colleen, has recently joined the program team as an intern. She has many years of experience with people with disabilities and is excited to integrate nutrition into her work. The Louisiana team continues to work on adaptation to the curriculum to make sure it is as inclusive as possible.
Related News: Tuesdays with Liz
‘Tuesdays with Liz’ is a weekly video series highlighting current issues in disability policy. It is hosted by Liz Weintraub, a long-time disability advocate, and produced by AUCD. If you have any comments, feel free to email to: Liz Weintraub firstname.lastname@example.org or Kim Musheno at email@example.com
In this week’s edition of Tuesdays with Liz: Disability Policy for All Liz interviews four Nutrition is for Everyone ambassadors – Sarah Keathley (Arkansas), Lauren Griffiths (Louisiana), Lee Wallace (Tennessee), and Megan Krampe (Oklahoma). These ambassadors speak about the projects in their states that focus on how eating and learning about healthy food is important for everyone, including people with disabilities.
Lauren’s is the third video in the playlist.