No Patient Left Behind
While conducting the Advocacy Listening Tour each year, many important issues confronting PALS and their caregivers are raised by Chapters and individual advocates. However, many of these issues only impact limited numbers of PALS in a patient service area and thus do not have the necessary weight for a national campaign on the issue. Still other ideas simply are not politically feasible in today’s political climate. Yet the issues are of the utmost importance to individual PALS and their caregivers. Therefore, the Advocacy Department established the “Leave No Patient Behind” program to address some of these issues on a case-by-case basis.
Many of the problems faced by individual PALS can be fixed by a simple phone call from a Congressman’s aide. Other problems may require a “mini-campaign” by several PALS to encourage the Federal government to make small changes in regulations or policies that will have a large impact on the quality of life of PALS. Whatever the case may be, the Advocacy Department is committed to ensuring that the concerns of each and every PALS is heard and effectively communicated so that it receives attention and positive action from public officials.
The Advocacy Department has drafted “Leave No Patient Behind” letters for PALS to send to Congress on several important issues, including: custodial nursing care, speech generating devices, and grants for home safety improvements. In addition, through this program the Department has conducted research for Chapters and PALS on issues such as Medicare coverage of air flow mattresses, BiPaps, medical nutrition therapy, Social Security Disability and Local Medical Review Policies, which provide guidance to local communities on what items and services are covered by Medicare in a particular geographic area.
The Advocacy Department also continues to assist individual PALS who are experiencing problems with Federal health programs by enlisting the support and assistance of their Members of Congress, who provide direct casework services on problems that can be addressed by Federal agencies, such as the Social Security Administration, the Department of Veterans Affairs and the Centers for Medicare and Medicaid Services.
In 2005, the Leave No Patient Behind program once again is available to address those issues that fall outside of our Public Policy Priorities, including many of the issues raised during the 2004/2005 Advocacy Listening Tour. The program also will continue to help PALS and families reach out to their Members of Congress for assistance.
If you would like to request an issue be addressed as part of the Leave No Patient Behind Program, please contact Pat Wildman, Director of Federal Advocacy Outreach at pwildman@alsa-national.org or 1-877-444-ALSA.
The following sample letters currently are available as part of the “Leave No Patient Behind” program. Additional letters will be made available to Chapters and PALS as they are developed.
Presumptive Disability for Dynavox
Medicare Physical Therapy Coverage
Speech Generating Device in Skilled Nursing Facilities
Custodial-Skilled Care Exchange
Grants for Home Safety Improvements
Taxation of Respite Care Funds
Veterans’ Benefits
Veterans’ Aide and Attendant Benefits
Medicare Access to Assistive Technology Act
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