Independent Living's Real Costs

The office of Rep. Benjamin L. Cardin (D-Md.) also got involved, arguing that state officials could choose between loaning Schneider money or spending tens of thousands of dollars annually -- in Maryland the average annual cost is $50,000 -- to keep him in a nursing home.

The bureaucrats relented, and last year Schneider got two loans totaling $65,000 to cover the cost of the $48,000 elevator and some of the remodeling. His ranch home now has wide, sloping concrete walks from his front and back doors that draw him outside even on wintry days. His basement quarters feature a bathroom with a roll-in shower, a toilet with double grab bars and electronic sensing devices, kitchen cabinets that accommodate his wheelchair, and appliances installed so that he can reach into them from his wheelchair.

But he ran out of money to remodel the bathroom on the main floor and widen the hallways. The new elevator sits little used. The home for his MS friends hasn't happened, and Schneider rents out the first floor to an able-bodied tenant.

His correspondence with the state Department of Health and Mental Hygiene has convinced him that the state would try to make him comply with elaborate licensure and certification rules for what it calls his "residential facility."

"If the health care bureaucracy isn't attuned to working with people with disabilities, it doesn't matter what the words of the law are," he said.

Recently, Schneider hired two exercise therapists, who came to his house for several weeks of half-hour sessions. They had him do reps with four-pound weights on his good right arm, and worked with his left arm and legs as well, under the theory that repeated movement might invigorate his damaged nervous system.

Schneider also has his longtime personal attendants help him do stretching exercises with his left arm to keep the muscles from permanently contracting. During one visit, he grimaced as attendant Oretha Solee slowly pulled his extended arm out and behind his back.

"That's good, that's enough," he whispered.

Someday, Schneider says, there may be a medical breakthrough in MS, and he wants to remain as limber as he can be. In the meantime, he receives calls from health care bureaucrats who want to update their records and ask if he still has MS. Yes, he tells them, and he recounts the conversations with sardonic resignation.

He has learned to live with it.•