ALS Association


People with ALS Should Have Access to the Medicare Home Health Benefits They Deserve

The ALS Association is ramping up its efforts to make sure people with ALS who rely on Medicare have access to home health care benefits.

“Many people in the community, including people with ALS, people within our chapters, and our clinical partners, have told us about the serious and persistent challenges faced by Medicare beneficiaries with ALS,” said Dr. Neil Thakur, executive vice president for mission strategy at The ALS Association. “Many such beneficiaries, despite being fully qualified, are turned down for the home health benefits they deserve. Other beneficiaries are able to receive Medicare home health but deal with inadequate hours of service and inappropriate termination from care.”

“The root of the Medicare home health access problem is that laws and regulations discourage providers from adequately serving people with ALS,” Dr. Thakur added. “The current system limits the number of high-cost patients a home health agency can serve. It also underpays for such patients by at least 20 percent.”

The ALS Association is working to convince policy makers to change the law and regulations. Here are a few actions we are taking to do that:

CMS is responsible for reimbursement and regulation of the Medicare home health benefit. The agency spent about $18.1 billion on home health care services to serve more than 3.5 million Medicare beneficiaries in 2015.

As mentioned previously, flaws in Medicare’s reimbursement system make it hard for people with ALS to access the benefits they need even if they meet all criteria. To be eligible for Medicare’s home health benefit, a beneficiary must be home-bound and require skilled nursing or therapy.

In addition, a physician must order and supervise care for a 60-day period which may be renewed as many times as needed. Find out more about the benefit here.

For more information about our advocacy activities for and on behalf of the ALS community, please click here and here.