Keeping you updated. On Thursday, January 12th, I received an email from Barbara Newhouse, ALS Association President & CEO, in which she provided an update on the list the ALS community had requested her organization to act upon. The email can be found following my response to her. Warning, it’s a long post… ***Email from Catherine Scott to Barbara Newhouse, dated January 14, 2017*** Hi Barb, Thank you for the follow-up email concerning the action items the ALS community has requested your organization to consider and act upon. I sincerely appreciate your willingness to work and communicate directly with me and look forward to a successful year of advocating and acting together to improve the quality of life for ALS patients and their families. While your summary is very encouraging, I am specifically looking forward to the results of Calaneet's analysis of the "2016 List of Requested ALSA Actions, Compiled by the ALS Community" (attached). In an email dated January 3rd, Calaneet had stated she was categorizing the items on the list into three areas: 1) resources currently available or could be accessed for, 2) short-term goals, and, 3) long-term goals. This is the detailed level of feedback I greatly anticipate receiving and sharing. Please let me know when it will be made available. Additionally, if I may, I would like to suggest a few changes in practice. They are the following: Care Services Survey and Virtual Listening Tour 1. Provide notices and invitations for surveys and listening tours consistently via multiple outreach methods, including email and social media. It is not effective to simply announce such events on your website, and you will receive the best sampling of data by reaching more participants. A minimum of two weeks’ notice should be sufficient for individuals to manage and rearrange their schedules. 2. Provide the results of surveys and listening tours consistently via multiple outreach methods, including email and social media, for the same reason as the aforementioned point. I, for one, was unaware such information was published. While I do utilize the alsa.org website, it is typically with a specific objective in mind. It is unlikely members of our community will stumble upon the information on your website, particularly given how many pages there are. 3. Provide specific action items and updates from surveys and listening tours. Generalities are insufficient and, frankly, discourage future participation. Why? Participants feel they are not being heard and are being given the same rhetoric over and over, even if that's not your intention. Each person spends a great deal of their time and effort preparing and participating, and they expect follow-up to their specific comment, question or concern. While I realize it may not be a good idea to post such content publicly on your website, there must be a solution. Transparency 1. Provide public meeting minutes from patient advisory board meetings and board of trustee meetings. These two groups are representing the whole of our community to the ALS Association. What advice, decisions and actions are they providing/making on our behalf? As far as Medicare advocacy in the upcoming year, I thank you for your stated commitment. I have absolute faith that the Center for Medicare Advocacy and Team Gleason, along with the ALS Association, will actively and tirelessly work to improve access and ultimately expand home health services benefits. I realize I sound like a broken record, but it truly is a matter of life and death for many. I wish you all well working with the upcoming administration and am available to help in any way needed. I look forward to hearing back from you. Warm regards, Catherine ***End of email from Catherine Scott to Barbara Newhouse, dated January 14, 2017*** ***Email from Barbara Newhouse to Catherine Scott, dated January 12, 2017*** Hi Catherine, Many of the issues identified through input from your document, as well as our 2016 Community Survey, the multiple virtual and in-person Community Listening Tours, chapter experiences, clinic surveys and other analyses shows the high level of integrated involvement of our three mission priorities to achieve results. We continue to work diligently to address those issues that we can influence with positive impact. Our current projects and initiatives are quite extensive, but I want to highlight several areas that were mentioned: Requesting input from the communities we serve: · The Association conducted a community survey in June of 2016. Background on the survey and results were posted on August 31, 2016. The direct link is: https://alsadotorg.wordpress.com/2016/08/31/the-als-association-care-services-survey-results/. The ALS Association Care Services Survey Results The ALS Association is pleased to share the results of the 2016 Care Services Community Survey. Below we offer some background on the survey and highlight · The Association conducted four virtual/in-person listening tours across the country, which were attended by members of our National Board of Trustees and Chapter Board of Representatives. A summary was posted in July. The direct link is: http://www.alsa.org/news/vision-express/articles/july-2016/virtual-listening-tour.html This Is What You Told Us. On June 21, ALS Association leadership hosted a Virtual Listening Tour for people living with ALS and their caregivers. · Inviting input from the communities we serve will continue and we are currently establishing dates for 2017 Virtual Listening Tours and other forums. These will be announced on our web pages. In addition, we will continue to solicit input from our chapters, partners, collaborators and other key stakeholders. Advocacy - Medicare and other health care benefits: Leading efforts that support our communities in obtaining appropriate access to Medicare and other health care (e.g. Veterans Benefits) is a priority for The Association. We understand that efforts may be undertaken as a singular organization, but clearly recognize the collective power in working with other organizations, both in the ALS space and within other disease categories, in these efforts. Addressing issues associated with accessing health care will include many short and longer-term strategies and tactics, so have included advocating for Medicare benefits as both strategic and operational priorities. Within the last few weeks, members of our executive leadership team have reached out to organizations, subject matter experts, and individuals of influence with whom we expect strong collaborative relationships to unite in these efforts in 2017. We are committed to staying the course and remaining directly engaged in addressing challenges people face in accessing benefits in a variety of areas. As part of these activities, The Association resourced the development and rollout of, and is providing ongoing support of, educational webinars and materials including the below. To date, these resources have been accessed over 10,500 times. · An Overview of Medicare for People Living with ALS, With an Emphasis on Medicare’s Home Health Benefit (Center for Medicare Advocacy) Can be viewed on demand on their website. · Case Studies Illustrating Required Components for Medicare’s Home Health Care Benefit: Skilled Care, Homebound, Face-to-Face Certification and “Dependent” Services Defined (Center for Medicare Advocacy) Can be viewed on demand on their website. · An Overview of Medicare for professionals and ALS Association chapter staff with an Emphasis on Medicare’s Home Health Benefit (Patient Advocate Foundation) · A dedicated MAP web-page on the Center for Medicare Advocacy website · Access to the Center for Medicare Advocacy’s Chapter 4 of the 2016 Medicare Handbook on Home Health Coverage · Medicare-related topic printed and web-based materials through the Center for Medicare Advocacy · An ALS CareLine to provide direct advice regarding Medicare Home Health Benefits to ALS Association chapter staff (Patient Advocate Foundation) · Informational documents on the basics of home health, which are available on ALS Association web pages and in hard copy Transparency/Financials The ALS Association is committed to providing complete and accurate information about our activities and the associated financial costs. To support this commitment, we provide access to our Internal Revenue Service Form 990, our audited financial statements and annual reports to summarize and simplify the financial data. We encourage anyone, especially those interested in supporting our cause, to review the information. The direct link to this information is: http://www.alsa.org/about-us/financial-information.html Research The Association works with top ALS experts all over the world. Once The Association receives grant applications from researchers, our Chief Scientist, Dr. Lucie Bruijn, works through a stringent grant peer review process that includes preset policies and procedures in order to maintain the integrity of the program. These are similar to those developed as NIH standards. Top ALS experts participate on the review panels and recommend funding for the best, most promising, research projects from a pool of very competitive grant applications. We understand that communicating our support of global research is an extremely important part of doing so. We have recently completed a redesign of our research web pages in order to more succinctly provide that information. The main access page is http://www.alsa.org/research/. This allows cascading of information in the areas of: · Our Approach · Global Impact · Research We Fund · Clinical Trials · Research News For more detailed information on some of the topics that were mentioned through community input, the following web pages will be of assistance: http://www.alsa.org/research/research-we-fund/ http://www.alsa.org/research/research-we-fund/project-page.html?appId=337 http://www.alsa.org/news/media/press-releases/fda-approves-clinical-trial-102416.html http://www.alsa.org/research/clinical-trials/ http://www.alsa.org/research/our-approach/inspiring-partnerships/strategic-initiatives/ The outpouring of support from the ALS Ice Bucket Challenge has allowed the ALS Association to champion numerous new strategic initiatives in order to build ... http://www.alsa.org/fight-als/ice-bucket-challenge-spending.html Care Services The Association has established the following priorities for our cares services programs and services: · Clinical Quality - Design certification and other review programs that support access, consistency, quality, and services provided through The Association’s Certified Treatment Centers of Excellence and other delivery models. · Portfolio of Services - Partner with chapters and territories to further provide core services and to assess the needs of the communities we serve in order to identify gaps in programs. The reviews will serve as a foundation for developing and delivering programs that are relevant and sustainable. · Partnerships and Collaborations- Actively pursue developing collaborative relationships and partnerships with Chapters, other Association programs (research, advocacy), institutional providers and other external organizations in order to strengthen services provided. · Competencies - Develop programs to educate and support a highly motivated and competent ALS Association workforce and to support people living with ALS, their families and caregivers. · Educational Resource Library - Develop an educational resource library, including written publications, internet and other media for the provision of consistent information for our communities. Regarding the request for educational materials, we expect the following to be available in February 2017: Living with ALS Resource Guides We have undertaken the rewrite the original Living with ALS manuals, adding new and relevant content. The series has been developed for people living with ALS, family members, caregivers, and other healthcare professionals, as well as ALS Association chapters and national staff and will cover the following 12 topic areas: 1. What is ALS? An Introductory Resource Guide for Living with ALS 2. After the ALS Diagnosis: Coping with the “New Normal” 3. Changes in Thinking and Behavior in ALS 4. Living with ALS: Planning and Decision Making 5. Understanding Insurance and Benefits When You Have ALS 6. Managing Symptoms of ALS 7. Functioning When Mobility is Affected by ALS 8. Adjusting to Swallowing Changes and Nutritional Management in ALS 9. Changes in Speech and Communication Solutions 10. Adapting to Changes in Breathing When You Have ALS 11. Approaching End of Life in ALS 12. Youth and Families Manual Additional information and resources are housed on our web pages. http://www.alsa.org/als-care/resources/publications-videos/factsheets/ Information for Emergency Medical Personnel and Hospital Staff The goal is to develop a packet of information and forms that a person/family can use to communicate in an emergency situation. Drafts have been forwarded to our medical advisory council for feedback. We anticipate the following to be included in the initial packet. · A z-folded card for wallet, car glove compartment etc. · Key Information for EMTs and emergency room personnel · A hospital staff document that describes some of the challenges facing people living with ALS · Basic letter board for communication · Guidance in developing advance directives · Family and friends information sheet · Care team information sheet · Guidelines for preparing for an emergency Catherine, to reiterate, the above deliverables and resources are a representation of those currently underway through The Association and we anticipate adding programs and initiatives that can provide positive outcomes for our community. We have asked our communications team to develop proper communication tools, including method, placement and timing in order continue to update those we serve. Barbara Newhouse President and CEO The ALS Association ***End of email from Barbara Newhouse to Catherine Scott, dated January 12, 2017***