Tell ALS Association: Improve home care for ALS patients immediately

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Tell ALS Association: Improve home care for ALS patients immediately

This petition had 11,583 supporters
Catherine Scott started this petition to President & CEO, ALS Association Barbara Newhouse and

ALS patients desperately need the ALS Association to ACT IMMEDIATELY to address and correct home care issues.  There is miscommunication, as well as a knowledge deficit, of the home health services options available through insurance programs, including Medicare.  There is also a great disparity between the home care coverage allowed by Medicaid as compared to Medicare.  As a result, we are being forced into unnecessary and extreme circumstances, including:  premature placement in skilled nursing facilities; family deterioration and collapse as a product of the immense strain placed upon it; bankruptcy, and, early death.  The taxpayers are then unjustly burdened with the resolution of debt, increased health care costs from unnecessary skilled nursing facilities placements and increased utilization of government programs.

The National ALS Advocacy Day & Public Policy Conference 2016 will be held in Washington D.C. on May 8-10, 2016.  Barbara Newhouse, President & CEO of the ALS Association, MUST MAKE HOME CARE FOR ALS PATIENTS THE #1 PRIORITY TO BE ADDRESSED.  Issues which must be resolved in 2016 include:

Lobby Medicare and Congress to modify guidelines and regulations for home health services, including, but not limited to:

  1. Increase home health services coverage and hours per week allowed to equaling or being greater than those provided for by Medicaid.
  2. Add as an independent, sole qualifying factor for home health services the loss of 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.
  4. 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*.

Improve the ALS Association’s quality and effectiveness in serving the ALS community’s home care issues by implementing the following:

  1. Provide prompt, in-person information about ALS, as well as guidance on how the ALS Association will help manage the complexities of navigating 'the systems'.
  2. Require staff of all ALS clinics/centers, patient services and chapter support persons to be competent in Medicare home health services.  This includes developing and disseminating in-depth knowledge of the “Medicare Benefit Policy Manual, Chapter 7 - Home Health Services”.  To ensure compliance and effectiveness, the ALS Association must teach and train, monitor, as well as produce and publish a quarterly ALS community survey.  Monitoring must ensure the consistency and quality of patient services amongst ALL ALS clinics/centers.
  3. Work closely with Medicare-certified home health agencies, and hold each agency accountable for providing ALS patients with the maximum benefit allowed in each of the six disciplines* of home health services, provided eligibility criteria has been met.
  4. Restrict interactions, relationships and referrals with home health agencies to only Medicare-certified home health agencies who offer all six disciplines* to patients.
  5. 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* must be available through their organizations, and they must also be in compliance with Medicare guidelines and regulations.
  6. Implement, and publicly report on, online patient surveys.  Surveys should be simple and include a feedback option.  This will allow ongoing monitoring of how ALS clinics/centers, patient services and chapter support persons are performing.  Areas of interest to target in the survey should include: quality of information sharing of Medicare-certified home health services options, services accessibility, as well as Medicare-certified home health agencies performance in all six disciplines*. 
  7. Update the website to reflect current and relevant information, particularly the list of active ALS clinics/centers.

* The six disciplines of home health services are: skilled nursing, home health aide, physical therapy, speech-language pathology, occupational therapy and medical social services.

Additional information of note:

ALS patients and their families are currently being drastically underserved by ALS clinics/centers, patient support services and ALS chapter-sponsored meetings.  Random, nationwide ALS patient experiences with ALS clinics/centers, patient services and chapter support for patients and families demonstrates the lack of forthcoming information and assistance in identifying options in home health services.   (Skilled home health services play a critical role in maintaining, slowing and preventing damage to major organs and body functions caused by immobility.)  There also is a lack of knowledge and understanding of Medicare home health services which can be utilized to meet patient needs during the course of disease progression. 

 Current miscommunication and conflict issues encountered include:

  • Patients are either not told or are given discouraging information as to Medicare home health services options.
  • Patients are told Medicare home health services are for short-term, rehabilitative purposes only.
  • Patients are not provided information about Medicare home health services certification and re-certification details. 
  • Home health agencies are invited to support meetings to market their private pay services.
  • Support meetings, and invited home health agencies, fail to advise patients of Medicare home health services and how patients can benefit from them. 


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