By Shelley Murphy, Globe Staff, 02/27/99

[INLINE] Since the state began taxing personal care assistants this month, growing numbers of disabled residents say they are having trouble getting help and worry that they may lose their independence.

Advocates for the disabled say this new burden, along with the state's decision to join a Supreme Court case defending the rights of states to decide whether disabled people live in institutions or the community, adds up to a campaign against them.

Disability rights groups from around the state are vowing to storm Governor Paul Cellucci's office next week to protest.

''We're constantly under siege,'' said Charlie Carr of Methuen, who was institutionalized for seven years after a diving accident left him a quadraplegic as a teenager and has been living independently for 24 years with the help of personal care assistants.

''They have a billion-dollar surplus and the Republicans don't know how much they want to use for tax relief or to throw into the Big Dig, and we can't even get people out of institutions in 1999,'' he added.

But state officials say disabled residents who hire personal care attendants are considered household employers, just like parents who hire nannies, and have been breaking the law if they didn't withhold taxes from their workers.

Under the new policy, the state withdraws taxes directly from the care assistants' paychecks; previously, disabled residents paid their workers directly and were responsible for paying state unemployment insurance and Social Security taxes.

Workers were supposed to pay state and federal taxes - but many apparently did not.

Although the state raised the personal care attendants' salaries by a dollar an hour, up to $8.87 per hour, the increase was offset by the new tax policy.

''Now we're losing attendants in droves because they don't want to work for peanuts and get taxed,'' said Carr, who runs the Northeast Independent Living Center, which helps the disabled find home help and teaches them skills they need to live in the community. ''We're not protesting the fact that the money is taxed, but we want the state to make their net wage a living wage.''

Carr said he knows five disabled people who have been forced to go into nursing homes because their attendants quit.

Richard McGreal, a spokesman for the Division of Medical Assistance, said the new tax program was adopted because many disabled employers weren't paying unemployment insurance for their home workers, as required by law. The problem came to light when the workers were fired and discovered they weren't eligible for unemployment benefits, he said.

''This division has always tried to maintain community services and our number one reason for maintaining those services are quality of life issues,'' McGreal said.

Nonetheless, disability rights advocates are already simmering over Massachusetts' decision Feb. 4 to join 12 other states in urging the Supreme Court to endorse the position that states have a right to decide whether mentally disabled people live in institutions or are treated in the community.

Attorney General Thomas F. Reilly was criticized by advocates for the disabled for signing on to a ''friend of the court'' brief backing Georgia's challenge of the Americans with Disabilities Act.

Olmstead v. L.C. & E.W. involves two mentally disabled patients at Georgia Regional Hospital.

Ruling in favor of the patients last year, the 11th Circuit Court of Appeals found that the disabilities act requires states to offer treatment in the least restrictive appropriate environment, and that budgetary constraints are not a defense. Yet the court stressed that it did not believe that all patients should be deinstitutionalized.

In its appeal, Georgia is arguing that the disabilities act doesn't give the federal government the power to mandate how the state spends its money on services to the disabled.

Advocates for the disabled say the case, which will be heard April 21, has broad ramifications and could take away the right of disabled people to live in the mainstream world.

But some families of the most severely mentally retarded say they support Georgia's challenge and, like Reilly, have signed on to a ''friend of the court'' brief urging the Supreme Court to overturn the ruling.

John Sullivan, whose mentally retarded daughter has resided at the Wrentham state school for 40 years, said he fears his daughter will be pushed out into the community if the Supreme Court mandates that the disabled are treated in the least restrictive environment appropriate.

This story ran on page B03 of the Boston Globe on 02/27/99.