QUALITY OF LIFEHelp ALS patients get the respiratory care need.
Initiative One: The ALS Living Center
ALS is considered fatal, but this is not necessarily so for those who accept the terms imposed by ALS for continued life, including:
- Increasing dependence on others as paralysis progresses
- Use of communication aids as the ability to speak is lost
- Placement of a feeding tube as the ability to swallow is lost
- Respiratory support, progressing to tracheotomy and ventilator-dependence as the ability to breathe is lost
A long, productive life with ALS is possible. Sadly though, few ALS patients choose to live with their disease long-term. There are many reasons for this, but perhaps the biggest is the heavy toll that caring for an ALS patient takes on families. Many are simply overwhelmed by the challenge, and patients invariably dread becoming a burden on their loved ones.
We want to tip the scales in favor of ALS patients and their families by creating an ALS Living Center in the Dallas area modeled after those already successfully operating near Boston and in New Orleans. A fully-automated, vent-ready, skilled nursing residence dedicated to the specific needs of ALS patients is a challenging but achievable goal.
We look forward to the day when a cure is found and an ALS Living Center is no longer needed. Until then, helping ALS patients live full and enjoyable lives is the best way to truly make a difference for those who must face this disease today. It is simply the right thing to do.
Initiative Two: Respiratory Care Services
For those with ALS who live with a tracheostomy and mechanical ventilation, daily ALS-specific respiratory care provided by a qualified specialist is required to keep the lungs clear. Such care improves both quality of life and longevity by dramatically reducing the incidence of pneumonia and consequent hospitalization.
While Medicare/Medicaid and most insurance companies will pay for the equipment, at-home respiratory care by a qualified specialist is rarely covered, placing a very heavy financial burden on the patient and family.
Our Respiratory Care Initiative will help patients pay for at-home respiratory care from approved providers when such care is not covered. We will also work with insurance payers, including Medicare and Medicaid, to help them understand the need for at-home respiratory care and the financial benefit of covering such services.