|MDA helped David Jayne travel to Washington for the June 3 announcement of the three states that will test the David Jayne Homebound Amendment. With him were, from left, son Hunter, caregiver Gianna Wright, mother Georgia Jayne, and daughter Hannah.
Photo by Kyle Kreutzberg
Attention people with ALS in Colorado, Massachusetts and Missouri who receive Medicare home health care services:
Want to catch a movie?
In October, Medicare will begin a two-year, three-state test project to see what will happen if up to 15,000 permanently disabled home health care beneficiaries are allowed to go to the movies, their children’s band concerts, barbecues with friends — basically anywhere they’re able to go except to do paid work.
Medicare regulations now require beneficiaries to remain “homebound” except for brief, infrequent absences of an approved nature. Violating this restriction can result in loss of services.
The test project was created in an amendment to the Medicare prescription drug bill, which Congress passed in November. It will gauge the effect of dropping the homebound restriction on the home care program’s cost, participation rate and quality of care.
After reviewing results, Congress will decide whether to suspend the restriction for beneficiaries nationwide.
A tiny step
“It’s not a question of cost, it’s a matter of freedom,” said Rep. Edward Markey (D-Mass.), expressing doubt that the test will result in higher costs or greater participation rates.
“Lifting restrictions on the length, frequency and purpose of departures from home would mean the world to these patients and their families.”
The David Jayne Homebound Amendment was sponsored in Congress by Markey and Sen. Susan Collins (R-Maine).
It’s named after the originator of the drive to reform the homebound restriction, a Georgia home health care recipient and 16-year ALS survivor.
Jayne, who briefly lost his services for attending a football game, organized a national coalition and traveled to Washington several times to lobby for change.
The test project represents a tiny step in the movement away from institutionalization and toward greater integration of people with severe disabilities into their communities.
“This demonstration will give those with chronically disabling conditions a chance to live full lives and contribute to their communities while still receiving services in their homes,” said Tommy G. Thompson, secretary of the U.S. Department of Health and Human Services (HHS), in naming the three test states on June 3.
In-home services are available to Medicare recipients certified by their doctors as needing daily skilled nursing or therapeutic care (not simply custodial care).
Some beneficiaries only use the program for a short time. But the test project is aimed at long-term users, such as people with ALS, who have permanent, severe disabilities that aren’t expected to improve, and who meet the following criteria:
- Need permanent help with three of five activities of daily living (bathing, dressing, eating, toileting and transferring)
- Need permanent skilled nursing or therapeutic care
- Require assistance to leave home
- Aren’t working outside the home
People in the three test states who meet these criteria should contact their home health agencies or local Medicare offices about participating in the test project.
Enrollment campaign important
Jayne is concerned that lack of publicity and low interest from home health agencies (HHAs) may make it difficult to enroll 15,000 participants, which in turn could endanger the project’s success.
HHAs, which say they lose money serving high-need beneficiaries, “don’t have any motivation to recruit participants,” Jayne said.
It remains to be seen how hard the Centers for Medicare and Medicaid (CMS) will work to enroll beneficiaries, he said. CMS is the federal agency that administers Medicare.
“If an adequate population sample isn’t achieved, CMS most likely will not report favorably to Congress, regardless of the data,” Jayne warned. “We need a vigorous information campaign in the three states in particular, as well as nationally.”
For more information on changing the homebound restriction, visit www.amendhomeboundpolicy.homestead.com.