Jayne, who has lived with ALS for thirteen years, devotes his time and energy to connect with people who are newly diagnosed with the condition; to show by his example that the road ahead for them is not the picture of doom and gloom that they might have been led to believe. He started an Internet listserve for people with ALS to have a forum. He goes out to do public speaking. He likes to attend a football game every now and then.

Several days after this story ran, the agency canceled JayneÕs aide service. He is funded by Medicare, and the rule is that in order to be eligible for in-home assistance one must be Òhomebound.Ó The rule was written decades ago when it was assumed that people in certain medical conditions could not do anything. When Healthfield Home Health read about JayneÕs trips to football games, they decided that he was not homebound and, therefore, ineligible for service. Agencies like Healthfield can be inspected or audited any time by Medicare, and if it is learned that Medicare money was used for a service that a recipient was not eligible for, that could result in a fraud charge.

The rule itself is not entirely absolute, either. It defines ÒhomeboundÓ as when "leaving home is a major effort." "When you leave home, it must be infrequent, for a short time or to get medical care," according to Medicare's Web site. What exactly is a Òmajor effort?Ó How many times a week is Òinfrequent?Ó

This is an outdated standard that does not fit the living needs of people living today with disabilities. JayneÕs example clearly demonstrates this. He must have help to bathe, dress, eat, and travel. But he can do all these things and have control of his own life because of the assistance he gets. Why should the government force a person to ÒchooseÓ to be a prisoner in his home to be awarded a freedom that would allow him to leave?

People who get their services through Medicaid instead of Medicare already have some relief. In the wake of a US Supreme Court decision upholding federal law that all programs of state and local governments must be in Òthe most integrated setting,Ó the Health Care Financing Administration issued a directive: "...that the use of a 'homebound' requirement under the MEDICAID home health benefit violates Federal regulatory requirements." HCFA understood that the most integrated setting for anybody is out there--in the community. ThatÕs where people should be free to be and thatÕs where the services they need should be along with them.

Since Medicare is a federal program, the ADA does not apply and neither does this particular Supreme Court ruling.

(For the record, my own personal assistance services are paid for by Medicaid.)

Even if there is some flexibility in MedicareÕs homebound rule, it is still not consistent with our reality today. Disability does not equate illness, even if some people have both. People who have a real need for personal assistance also have the same rights as any other citizen. The homebound rule, however well-intentioned, is abusive and must be abolished.

JayneÕs story has a happy ending--for now. After the newspaper reported this atrocity, and after Jayne made a phone call to his congressman, Healthfield reinstated him.

If you know anybody on Medicare who may need help someday and who enjoys freedom, too, urge them to make a phone call to their congressmen.

Overview of 'homebound rule'