Aid to Disabled Children Goes on Chopping Block : Congress: Lawmakers say the $4.5-billion program has grown out of control. They want to abolish cash payments to 887,000 children.

Joanne Spencer spends her sons’ disability checks on the electric bills that keep Joshua’s feeding pump whirring through the night and on repairs to the portable computer that is David’s only form of communication.

Without Supplemental Security Income, Spencer says she couldn’t care for two sons with cerebral palsy at home and work part-time, earning the money she needs to support a third son in college.

But lawmakers say the $4.5-billion SSI childhood disability program has grown out of control. They want to abolish cash payments to 887,000 disabled children, many with chronic illnesses or life-threatening diseases, who live in low-income families.

Legislation being drafted by Reps. Jim McCrery (R-La.) and Gerald D. Kleczka (D-Wis.) would replace SSI payments to children--but not the payments that disabled adults receive--with expanded medical care under Medicaid, which children would continue to receive. Things like wheelchair ramps, psychiatric services or respite care could be provided under the proposed plan.

Parents say they spend their children’s SSI checks on items that would not necessarily be covered: transportation to doctors’ appointments; electric bills, which are high because they are running feeding pumps or air conditioners or humidifiers; or special clothing.

McCrery and Kleczka also want to tighten the definition of childhood disability, saying current law allows children who are not truly disabled to collect a monthly federal benefit averaging $412.

Kleczka said the system encourages parents to have their children classified as disabled and discourages treatment because a successful recovery means that benefits end.

The number of children who receive SSI tripled in the last four years, since a 1990 Supreme Court ruling and new regulations liberalized the rules. The cost of the program nearly quadrupled.

Educators and lawmakers claim parents abuse the program by coaching their children to misbehave in school, fail tests, or “act crazy” to qualify for benefits. Children with mental impairments account for more than two-thirds of the recent growth, according to the General Accounting Office.

Parents of severely disabled children say loss of cash benefits under the proposed SSI overhaul, which may become part of legislation to reform the welfare system, could force families to put their children in institutions.

Jim Farris of Milwaukee, whose 2 1/2-year-old daughter, Stephanie, has cerebral palsy, uses SSI to buy the formula that is fed to her through a tube in her stomach, and for the 10 to 11 diapers she uses every day and will probably need for the rest of her life.

Conni Wells’ teen-age daughter, Janell, needs insulated underwear, jogging suits, humidifiers, skin creams and a heated water bed to cope with a disorder that affects her heart rate, breathing and body temperature.

“Don’t take away the only thing we have that we can use in a flexible manner to meet all these diverse needs of our kids,” said Wells of Tallahassee, Fla. “Our homes are not hospitals.”

Spencer, a divorced mother in Brockton, Mass., said SSI “has made it possible for me to keep our family together.”

David, 20, and Joshua, 16, have seizure disorders as well as cerebral palsy. David uses a computer to communicate and has severe behavior problems, such as being physically aggressive. Joshua has asthma and is in a wheelchair.

“I wish with all my heart I didn’t have to take this money,” Spencer said. “We’re seeing so many reports on the problems with SSI, of families buying swimming pools and VCRs. But that’s not what most of us use it for. I use it to give the kids the things they need to keep them at home.”

Rep. McCrery said some families “will not be as well off under the new program as they are under the current program. We may not be able to avoid that.” He promises, however, that “no families with truly, seriously disabled children will suffer under this reform.”

But Jonathan Stein, general counsel at Community Legal Services of Philadelphia, which represents low-income disabled children, said these families have many non-medical needs.

“If they are not met . . . the answer will be the institutions of prior decades,” Stein said. “The SSI program is saving the country billions of dollars by keeping children out of institutions, with their families.”