Barbara Newhouse, President & CEO of the ALS Association, responded to my third letter via email yesterday. In it, she expresses specific actions she will take and a date by which she will provide me with an update. Progress. Below you will find my response letter, dated 03/09/2016, which I sent to her via email. The content of her email is provided thereafter. Dear Ms. Newhouse: Thank you for sharing with me the actions you are taking on behalf of the ALS community. I will be eagerly awaiting your update later this month. Before committing myself to the ALS Association’s Patient Advisory Council, can you share with me what its purpose is, as well as the frequency and type of involvement expected of me? Also, what are your plans to address the Bayada issues I mentioned previously? In preparation for your meetings with the National Patient Advocate Foundation and the Center for Medicare Advocacy, I have provided for you a description of the issues which need to be addressed/corrected and the correlating experiences of ALS patients which necessitate your action. I have broken them down into two categories: 1) “EXISTING MEDICARE BENEFITS – Immediate, non-policy change fixes”, and 2) “EXPANSION & IMPROVEMENTS TO MEDICARE BENEFITS – 2016/2017”. The first is easily correctable and will simply ensure patients are accessing and receiving Medicare benefits already in place. The second, while working on concurrently, will take longer to achieve but is equally urgent. EXISTING MEDICARE BENEFITS – Immediate, non-policy change fixes 1- 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). ISSUE: It is nearly impossible for ALS patients to find a Medicare-certified home health agency willing to provide medically necessary home health aide hours greater than two or three bath hours per week. Skilled services are a medical necessity and are supported by a physician's prescription. Those patients who are successful struggle through educating the agencies and insisting they fulfill their obligations as a Medicare certified agency. This process goes unmeasured, because there is no quality control process in place for patients to report non-acceptance by a home health agency. 2- 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). ISSUE: There are too many obstacles for ALS patients to receive their benefits, and most just give up. It should not be this difficult. EXPANSION & IMPROVEMENTS TO MEDICARE BENEFITS – 2016/2017 1- 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. ISSUE: Medicare home health services benefits are significantly less than those allowed for by Medicaid. Families are forced into bankruptcy and divorce to qualify for the services they need through Medicaid. The current Medicare allotment of home health services is insufficient in meeting the needs of ALS patients, particularly those who have undergone a tracheotomy. 2- 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. ISSUE: ALS patients are unable to care for themselves once they have lost the use and mobility of upper and/or lower extremities. 3- Increase the duration of home health services re-certification requirements from 60 day intervals to 180 day intervals. ISSUE: ALS patients are not expected to improve but will, rather, deteriorate progressively. It is, therefore, unnecessary for such frequent re-certification intervals. A 60 day re-certification interval is also a deterrent in finding a Medicare-certified home health agency willing to work with you. Thank you for your leadership in correcting home care issues for the ALS community. I look forward to your response. Sincerely, Catherine Scott ALS Patient ******* Beginning of Barbara Newhouse’s Letter Dated 03/08/2016 ******* Dear Catherine, Thank you for your thoughtful comments and your detailed plan. Here’s a list of the actions I am taking to address our shared concern about these issues: 1) I am working with Chapter Executives from our 39 chapters to finalize Medicare home health care materials and to set up a process to further educate those who support everyone living with ALS. I will update you on our progress by March 25th. 2) I will discuss these issues with the two organizations that routinely work with Medicare, the National Patient Advocate Foundation and the Center for Medicare Advocacy. I will update you on the outcomes from both of those meetings by March 25th. 3) I will be sharing the final draft and soliciting feedback on our new Medicare home health care materials with The ALS Association’s Patient Advisory Council, which is made up of people living with ALS and care providers. Perhaps you would like to be a member of this Council? 4) I will address our progress on these issues at the National ALS Advocacy Day & Public Policy Conference in May. Again, I deeply appreciate your working with me on these important issues. Warm Regards…Barb ******* End of Barbara Newhouse’s Letter Dated 03/08/2016 ******* 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… https://www.change.org/p/tell-als-association-improve-home-care-for-als-patients