Barbara Newhouse, President & CEO of the ALS Association, responded to my second letter via email last Thursday. In this second response from her, she expresses more urgency, although, once again, her commitments were too vague. I responded yesterday with a very clear, detailed path forward. Both emails are provided below. We must not ease our efforts until we have attained the home care improvements we need and are entitled to. Anything less is unacceptable. Please continue to sign and share the petition… Below you will find my response letter, dated 03/06/2016, which I sent to her via email. The content of her letter which prompted my response is listed thereafter. Here it is (warning: it’s another lengthy one…): Dear Ms. Newhouse: Thank you for your response to my email and the sense of urgency you conveyed. Immediate improvements in home care will provide much needed resources and relief to the suffering ALS community. I believe we are now on the path of making some real changes to correct the issues and request your confirmation of the specific actions your organization will take with dates. Clearly, substantial progress can be made long before the May date you proposed. Every day of delay, sixteen more American families will fall into the abyss of Medicare confusion. That can be fixed. Now. I propose the following be acted upon immediately: 1- Assign a project manager within the ALS Association who will be responsible for the tracking and timely completion of home care improvement action items. Action items include, but are not restricted to, those outlined in the petition. This person will provide a weekly, public project progress report to the ALS community and internal staff within your organization. Project manager will be assigned no later than March 11, 2016. Weekly, public project progress reports will begin on March 18, 2016. 2- Insure the competence of ALSA staff, ALS clinics/centers, patient services and chapter support persons on in-depth, detailed knowledge of the “Medicare Benefit Policy Manual, Chapter 7 - Home Health Services”. Additionally, ALSA staff need to know the rules and lead to ensure patients, caregivers, physicians, and ALSA social workers can work together to provide the best possible home care solution for the patient rather than stopping with an easy "no" from Medicare. (For example, Medicare currently requires a physician to submit a home care plan for the patient, including a skilled nursing or physical/occupational therapy component, to qualify for home health aide benefits.) This could be accomplished efficiently and quickly simply by staff reading and some frequent webinars. Following the success of the webinars’ initial education of all ALS support persons, future webinars may be utilized to assist ALS patients, families, caregivers and advocates with navigating the home health services system. ALS support persons must become informed by March 18, 2016. Webinars for the ALS community will begin the week of March 21, 2016. 3- ALSA board trustees will request the Center for Medicare Advocacy (CMA) to partner with ALSA and engage CMS/Medicare to develop and implement a plan to correct Medicare issues for ALS patients. Team will proceed to meet with Medicare to address and resolve the issues (through either regulatory or administrative policy change), which include, but are not restricted to: a) Investigate and enforce the maximum home health services benefit is being made available to ALS patients by Medicare-certified home health agencies in each of the six disciplines (skilled nursing, home health aide, physical therapy, speech-language pathology, occupational therapy and medical social services); b) Increase home health services coverage and hours per week allowed to equaling or being greater than those provided for by Medicaid (including two eight-hour shifts per day of skilled nursing services for ALS tracheotomy patients, as well as an increase in home health aide services allowed to 56 hours per week); c) Add as an independent, sole qualifying factor for any of the six disciplines (skilled nursing, home health aide, physical therapy, speech-language pathology, occupational therapy and medical social services) of home health services the loss of use and mobility of upper and/or lower extremities; d) Increase the duration of home health services re-certification requirements from 60 day intervals to 180 day intervals, and, e) Ensure the process to receive home health services benefits is simple, streamlined and guarantees consistent and dependable access to the maximum allowable hours per week in each of the six disciplines (skilled nursing, home health aide, physical therapy, speech-language pathology, occupational therapy and medical social services). Engage CMA by March 31, 2016. Engage CMS/Medicare by April 15, 2016. Medicare actions listed above will be implemented and take effect by October 31, 2016. 4- Bayada’s information must be immediately reviewed, as many ALS patients are being repeatedly provided incorrect information. As a Gold Partner with the ALS Association, Bayada must become the standard and example of excellence in services for other Medicare-certified home health agencies to emulate. All six disciplines (skilled nursing, home health aide, physical therapy, speech-language pathology, occupational therapy and medical social services) must be available through their organizations, and they must also be in compliance with Medicare guidelines and regulations. Corrections will be completed by March 18, 2016. 5- Provide for review to me and ALSA board trustees the draft of the informational tools and materials your organization has created for ALS chapters and clinics to ensure accuracy, helpfulness and thoroughness. Draft tools and materials will be provided by April 8, 2016. Tools and materials will be finalized and distributed by April 29, 2016. 6- Develop and act on a plan to further address and resolve home care issues during The National ALS Advocacy Day & Public Policy Conference 2016 in Washington D.C. on May 8-10, 2016. Resolving home care issues for the ALS community is the #1 priority and must be spotlighted during this event. Home care issues will be publicly addressed in Washington D.C. on May 8-10, 2016. ALS patients, families and caretakers are your only stakeholders. It is the responsibility of the ALS Association to listen to our needs and act on our behalf, and correcting home care issues is URGENT. As I have stated previously, you have only to read the thousands of comments to see how much the ALS community is suffering. For your reference, you may view the comments on the petition’s website found here: https://www.change.org/p/tell-als-association-improve-home-care-for-als-patients I look forward to your prompt confirmation of the actions and dates outlined in this letter. Sincerely, Catherine Scott ALS Patient ******* Beginning of Barbara Newhouse’s Letter Dated 03/03/2016 ******* Hi Catherine, I care deeply about this issue and I commit to you that we will immediately address the concerns you raise in your petition. The ALS Association worked hard to establish early access to Medicare benefits for those diagnosed with ALS, and we will work even harder to insure that the ALS community can easily access those benefits. I will start by getting a clear interpretation of the existing statutes that govern access to home health care and arranging a meeting with Medicare to address and resolve this issue through either regulatory or administrative policy change. Additionally, by the end of May we will have new tools for Chapters and Clinics to proactively use in order to greatly improve access to Medicare benefits and community resources. Thank you for reaching out to me. I stand with you on these urgent matters and will take immediate action to make access to benefits and services better for all with ALS. I welcome your thoughts and ideas, and I will keep you informed of my progress. Warm Regards…Barb ******* End of Barbara Newhouse’s Letter Dated 03/03/2016 *******