To all PALS and CALS who have experienced shortfalls in the provision of DME and home health services (meaning, I suspect, all of us), you may be interested in knowing that these huge problems are not on the list of the ALS Association’s priorities for its “Advocacy Day and Public Policy Conference” next week in Washington DC. ALSA appears to be focusing all of its efforts on pushing for pharmaceutical cures, with no advocacy regarding the rights of ALS patients that are violated every day in America in connection with home health and DME. If you are interested in changing this, you can write to ALSA chief Barbara Newhouse at [email protected].
There is an urgent, unmet need for ALSA to advocate for enforcement of existing rights relating to DME and home health care for ALS patients.
For patients with ALS, DME is their penicillin. An unnecessary delay in providing prescribed DME is as harmful and inexcusable as a pharmacy unnecessarily delaying the provision of prescribed penicillin. Yet healthcare providers routinely delay the provision of prescribed DME, and not just by days or weeks, but often by months! What would health regulators do if a pharmacy were routinely delaying provision of penicillin to patients by weeks or months after the prescriptions were written? ALSA should be urging regulators to take steps to ensure that these unreasonable delays are penalized under existing laws, so the providers are forced to streamline their processes.
Currently in the U.S., providing prescribed DME involves too many administrative steps and is hampered at various points by an unnecessarily long chain of paper-pushers. Even if there are people in the chain who are willing to do the right thing and try to move things forward expeditiously, they seldom succeed because others in the chain may be either disengaged, resistant to change, ignorant or insensitive to the urgency of the patient’s needs, or missing (vacations, sick days, etc.) without backup. Regulating agencies have not done anything to eliminate the delays, and they can be expected to stay the course unless and until ALSA starts advocating for elimination of unnecessary delays.
ALSA should also be making it a priority to educate health regulators that lack of adequate home health care for ALS patients is a form of unlawful discrimination. Virtually every federal court to address the issue has found that entities unlawfully discriminate when they place persons with disabilities at serious risk of unnecessary institutionalization. Denials and reductions of home health services have been consistently struck down as violating this “integration mandate.” Although the court cases filed to date have been brought against state Medicaid agencies under the ADA and the Rehabilitation Act, it is clear that this “integration mandate” now extends to virtually every health plan and hospital under section 1557 of the Affordable Care Act, which prohibits discrimination on the basis of disability by any health plan, hospital, or other provider that receives federal funds. ALSA should be shouting from the rooftops of Washington next week that the current limits on home health care offered by federally-funded entities are unlawful because they place ALS patients at risk of unnecessary institutionalization. This is a fight ALSA can win without changing any laws. All they need is to do is insist that the existing laws be followed.
Most ALS patients do not want to spend their remaining time on Earth bringing lawsuits, so the tragic reality is that the situation won’t change as long as ALSA fails to advocate for enforcement of laws that regulators are currently ignoring. Again, you can write to ALSA chief Barbara Newhouse at [email protected].
There is an urgent, unmet need for ALSA to advocate for enforcement of existing rights relating to DME and home health care for ALS patients.
For patients with ALS, DME is their penicillin. An unnecessary delay in providing prescribed DME is as harmful and inexcusable as a pharmacy unnecessarily delaying the provision of prescribed penicillin. Yet healthcare providers routinely delay the provision of prescribed DME, and not just by days or weeks, but often by months! What would health regulators do if a pharmacy were routinely delaying provision of penicillin to patients by weeks or months after the prescriptions were written? ALSA should be urging regulators to take steps to ensure that these unreasonable delays are penalized under existing laws, so the providers are forced to streamline their processes.
Currently in the U.S., providing prescribed DME involves too many administrative steps and is hampered at various points by an unnecessarily long chain of paper-pushers. Even if there are people in the chain who are willing to do the right thing and try to move things forward expeditiously, they seldom succeed because others in the chain may be either disengaged, resistant to change, ignorant or insensitive to the urgency of the patient’s needs, or missing (vacations, sick days, etc.) without backup. Regulating agencies have not done anything to eliminate the delays, and they can be expected to stay the course unless and until ALSA starts advocating for elimination of unnecessary delays.
ALSA should also be making it a priority to educate health regulators that lack of adequate home health care for ALS patients is a form of unlawful discrimination. Virtually every federal court to address the issue has found that entities unlawfully discriminate when they place persons with disabilities at serious risk of unnecessary institutionalization. Denials and reductions of home health services have been consistently struck down as violating this “integration mandate.” Although the court cases filed to date have been brought against state Medicaid agencies under the ADA and the Rehabilitation Act, it is clear that this “integration mandate” now extends to virtually every health plan and hospital under section 1557 of the Affordable Care Act, which prohibits discrimination on the basis of disability by any health plan, hospital, or other provider that receives federal funds. ALSA should be shouting from the rooftops of Washington next week that the current limits on home health care offered by federally-funded entities are unlawful because they place ALS patients at risk of unnecessary institutionalization. This is a fight ALSA can win without changing any laws. All they need is to do is insist that the existing laws be followed.
Most ALS patients do not want to spend their remaining time on Earth bringing lawsuits, so the tragic reality is that the situation won’t change as long as ALSA fails to advocate for enforcement of laws that regulators are currently ignoring. Again, you can write to ALSA chief Barbara Newhouse at [email protected].