Three Years Later a Homebound Amendment Remains in Limbo

Former Senator Bob Dole and David Jayne, who has ALS, pushed Congress to loosen Medicare homebound restrictions.

After two years of testing the waters and one year of studying test results, the federal government’s Home Health Independence Demonstration has little to show for the time and money invested in it.

The demonstration project was an experiment to test what would happen if the government loosened restrictions imposed on severely disabled people receiving Medicare’s “homebound” home health care benefits.

Approved by Congress in 2003, the demonstration project represented a hard-won victory for disability advocate David Jayne, 46, of Rex, Ga., who has ALS. Armed with a communication device, the Internet and dogged persistence, Jayne had mounted a three-year national campaign to change what he considered unreasonable restrictions on Medicare home health care beneficiaries.

Unfortunately, based on the evaluation of the project, it appears it was poorly structured by the Centers for Medicare and Medicaid (CMS) and has yielded no meaningful results other than details of how it didn’t work out.

The perils of disobeying

In order to receive Medicare in-home care (skilled nursing assistance with bathing, feeding and other basic functions), recipients must be certified “homebound” by a doctor, and only may leave their homes infrequently and for short periods, such as to go to the doctor or attend religious services. In the past, this restriction has resulted in people losing their benefits for leaving home to do such things as attend a funeral — or in Jayne’s case to attend a pro football game.

Jayne attended that game more than seven years ago, relying on the help of friends because ALS had left him unable to speak or breathe on his own, and with movement in only two fingers.

When Medicare learned of Jayne’s outing, it rescinded his home health care benefits.  He chose to fight and, with the help of his congressman, got his benefits back. But he chafed at what he considered Medicare’s unfair policy.

Congress acts … sort of

Jayne recruited supporters, including former senator Bob Dole, and formed the National Coalition to Amend the Medicare Homebound Restriction Act for Americans with Disabilities. He testified before Congress several times.

Eventually, legislators concurred that Medicare should investigate the situation and funded a demonstration project to run from 2004 to 2006 in Colorado, Massachusetts and Missouri. Medicare home health care beneficiaries in those states would be allowed to leave home whenever they wanted, for as long as they wanted, keeping a log of their excursions. 

When the project concluded, Mathematica Policy Research of Princeton, N.J., was hired to evaluate the results. The essence of its evaluation is conveyed in the title of its 2007 report: “Barriers to a Successful Experiment Were Multifaceted, and Difficult Policy Issues Remain.”

Multiple barriers to enrollment

Although Congress authorized CMS to enroll up to 15,000 participants in the project, only 58 participated.
Mathematica listed several factors that contributed to the low enrollment:

• Money fears.  Some home health care agencies with Medicare home health care contracts thought enrolling “demonstration patients” would cost them more in care than Medicare would reimburse.
• Benefit doubts.  Some agencies felt their patients would get no more benefit from the loosened regulations than they already enjoyed.
• Money, again. Some agency patients were eligible for both Medicaid and Medicare home health benefits, but participation in the demonstration required they be enrolled in Medicare. Some agencies balked at enrolling them, saying they got more reimbursements for their Medicaid patients.

Medicare home health care beneficiaries didn’t rush to sign up, either.  Mathematica found:

• Some people didn’t want to get involved if it meant they had to switch care arrangements — even if it would save them money.
• “Dual-eligible” individuals found their Medicaid home health care benefits superior to Medicare’s.

CMS’ own eligibility requirements had a chilling effect on enrollment, Mathematica found.  To current home health care requirements, CMS added six definitions of what constitutes “homebound.”  Among them: “The beneficiary requires skilled nursing services for the rest of the beneficiary’s life and the skilled nursing is more than medication management.”

What to do?

Mathematica concluded:

• CMS needs to communicate more effectively with home health care agencies to explain/translate how to handle patients who are dually eligible for Medicaid and Medicare.
• CMS needs to develop a more equitable compensation system for home health care agencies.
• CMS needs to clarify the meanings of project enrollment, qualifying terms such as permanent skilled care need, permanent disabling condition and homebound.

Participants liked it

Mathematica interviewed eight of the 58 participants about their participation.

Of those, three were in such fragile health that they derived no added benefit from being able to leave home.

Three others, all with paraplegia, said they weren’t able to leave home due to the difficulty involved in doing so.

The interviewee who spent most time away from his home (about 96 hours monthly) had muscle atrophy. His wife was his full-time caregiver/driver, and she enjoyed getting out to eat, shop and take long drives.

The eighth interviewee could walk with a cane and drive herself. Her time out of the house averaged 46 hours a month.

All eight participants — even though they couldn’t always take advantage of the loosened restrictions — still supported the concept of the demonstration.

However, the low enrollment numbers left Mathematica unable to draw conclusions about who might benefit, and in what ways, if the homebound restriction was dropped. Nor could it predict how frequently and for how long people might elect to leave their homes.

A chorus of nays

Without exception, the home health care leaders interviewed by Mathematica gave the demonstration project a uniform thumbs down.

• “Initially, we were excited that Missouri was one of the demonstration states, and we were anxious to see the project get under way. Then we found that CMS had put so many handholds on it, the project was unwieldy from the start.” — Mary Schantz, executive director of the Missouri Alliance for Home Care.
• “CMS provided no funds to compensate home health care agencies for the extra visits they would have had to make to the homebound participants, as required by the demonstration. I tried and tried to get people [agencies] to participate, but they almost all just said, ‘no thanks, not without compensation for the extra work we’d have to do.’” — Ellen Caruso, executive, Home Care Association of Colorado
• “It seems to me that the crafters of the demonstration were overly worried about having people come out of the woodwork to enroll in the program. I believe that’s why they designed the additional criteria … to discourage excess participation. But those added criteria proved far too narrow and restrictive to permit much enrollment at all. I also think there was a perception on the part of the crafters that many people out there were deliberately keeping themselves at home simply to ensure that they would continue receiving
  Medicare home health benefits. That proved to be totally incorrect. I think we need to start over.”
  — Patricia McDonald Kelleher, executive director of Home Care Alliance of Massachusetts.

Once more, with feeling

U.S. Representative Edward Markey, D-Mass., was one of the initial sponsors of homebound legislation. Despite the disappointing results, he says he remains convinced that loosening restrictions is the way to go.

“Individuals with late-stage Alzheimer’s disease, ALS and similar permanent diseases are not trying to ‘game’ the home health system,” he says, adding he will “continue to push for more freedom and independence for these types of patients … and look forward to continuing to work on this vital issue.”

To view Mathematica’s full 140-page evaluation of the project, visit the CMS Web site and select Medicare/Demonstration Projects and Evaluation Reports/2004.

A long crusade

David Jayne foresaw that the homebound experiment might flop, noting in 2004 at the signing of the legislation that home health care providers “don’t have any motivation to recruit participants.”

He warned at the time, “If an adequate population sample isn’t achieved, CMS most likely will not report favorably to Congress, regardless of the data. We need a vigorous information campaign in the three states in particular, as well as nationally.”

To read the history of the effort to change the Medicare homebound restriction, read through the following past stories:

• “Atlanta Man Inspires New Medicare Homebound Law,” April 2001
• “Homebound Law Would Benefit Millions,” June 2001
• “Dole Supports Homebound Act,” Aug. 2001
• “Congress Considers Homebound Reform, Gulf War Benefits,” Feb. 2002
• “Jayne Hopes Washington Crusade Will Slay Homebound Restriction,” June 2002
• “U.S. House Waters Down Medicare Homebound Amendment,” Aug. 2002
• “It Takes A Village To Fight the System,” Sept. 2002
• “Three States to Begin Testing New Homebound Rules,” July 2004