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Dawood

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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].
 

Nuts

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Dawood, I am sure that you've already sent your concerns to the ALSA, which I applaud.

I thought of your post today as it was explained that the three "asks" for tomorrow are issues that they feel "have legs"--in other words, issues we have a chance of impacting tomorrow.

This is year three for us, and I can tell you that I can't imagine having more than three issues to address. I got the schedule a couple of hours ago, and we have seven meetings tomorrow. We will take busses to Capital Hill, start with our Senators, have lunch, and then move to the House side. It will be grueling. It will be emotionally exhausting. I expect to be driving my husband around while he sleeps, because along with many of the PALS present, he just can't handle that many hours. It'll be ok, because I'll use his sleeping snoring self as my visual aid :)

I actually think the cross section of issues being pursued is well balanced: SSDI 5 month waiting period addresses financial worries, Dorman Therapies works towards a cure, and Complex Rehab Technologies affects everyone getting or replacing a PWC or parts/attachments for it.

I encourage anyone who is unhappy with those priorities to get involved with ALSA. The more the merrier :)))))
 

maryhahnward

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Well said Becky!
 

KimT

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One man in our local chapter with Medicare and GAP coverage has waited over 4 months for his PWC. He is in pain because of this. Medicare denied my BiPAP and we're still trying to figure out why. They blamed the doctor, the doctor blamed them. I agree that waiting for DME is a huge problem, especially in areas where there is a lending closet nearly empty.
 

maryhahnward

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He could try asking the local Disabled Vets org, American Legion, Marines Corps League, VFW - any one of them may have a wheelchair they can either loan or give away. You do not need to be a veteran to ask for one. Often when veterans either get new equipment or do not need theirs anymore they give them to one of those organizations. The VA will not take them back so they donate them. Recently I had this discussion about giving them to people with ALS who are not veterans and they seemed very warm to the idea. They simply can't store all that they get and people with ALS simply can't wait for a wheelchair. It's worth a try.
 
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Dawood

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we have seven meetings tomorrow. We will take busses to Capital Hill, start with our Senators, have lunch, and then move to the House side. It will be grueling

Advocacy is more than trying to change laws on capitol hill. Advocacy can, does, and must also include day to day enforcement of existing laws and regulations that are routinely ignored by health regulators and practitioners in connection with prescribing and approving funding for home health services and DME to ALS patients. Persuading regulators to enforce existing laws is WAY EASIER than trying to get new laws made, and advocating for enforcement can be done on any day, anywhere. So the press of business for meetings with senators is no reason to leave these crucial issues off of ALSA's advocacy priority list.

Moreover, it does not take a lawmaker to create clinical guidelines. Clinical guidelines are written by practitioners and clinicians and published as medical authorities. The absence of clinical guidelines for assessing an ALS patient's need for DME and home health services is the primary reason that these services are so hard to get approved by utilization managers who are clueless about ALS. Because health regulators must follow clinical guidelines, it would far, far, easier to bring about change by working with ALS clinicians to prepare clinical guidelines for home health care and DME, than it is to try to get new laws and regulations passed. But again, without coordination by ALSA, it will never happen.

I communicate with ALSA regularly, and one high-ranking, longtime member of that organization recently told me that, with regard to home health and DME, "ALSA is part of the problem, not part of the solution." This person said that the ALSA leadership is too set in its ways, with blinders on. That is why I urge all PALS and CALS to write to ALSA and urge them to make these into priorities.
 

Dawood

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He could try asking the local Disabled Vets org, American Legion, Marines Corps League, VFW - any one of them may have a wheelchair they can either loan or give away.

Here is a perfect example of why ALSA must make DME an advocacy priority. Here is someone with one of the most devastating diseases known to medicine, living in the most powerful nation on Earth, and what does he have to do to get a power wheelchair? Ask someone for a used loaner? Are you kidding me???? Yes, that is the right thing to do under the circumstances at hand, but it is a heartbreaking tragedy that some clueless bureaucrat is standing in the way of timely provision of the custom chair that he needs. And what is ALSA doing about this state of affairs? NOTHING

He is in pain because of this.

To prevent this kind of nonsense from recurring, ALSA needs to take a very small portion of its ice bucket war chest and sponsor the development of clinical guidelines for provision of DME to ALS patients and educate its social workers and advocacy volunteers on how to file expedited complaints within various existing regulatory frameworks. As long as ALS patients are forced to scavenge for hand-me-down equipment or do without, ALSA is not doing its job as an advocacy organization.
 

rknt50a

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I hope that ALSA national's recent organizational changes will result in a broader and bolder advocacy mission and not just a conservative public policy focus that they have preferred.

We'll see.
 

KimT

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I was hoping our local chapter representative could help this man. Some of us live alone and it's hard to self advocate....and getting harder. Is there a way to incorporate this frustration into the narrative of my document. Any suggestions are helpful. Document attached.
 

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