Pearl Waldspurger feels helpless. Her eyes redden as she fingers through the pile of bills spilling from her kitchen table.

Each one -- the $400 physical therapy bill, the $700 nursing assistant's bill and even the $42 vet bill -- is a stinging reminder that she soon may have to place her 31-year-old daughter Theresa in a home.

The Cary mother is adding them up, trying to figure out what she'll have to pay out of pocket if proposed cuts in the state budget go through.

When she sees the number, $708.25 more a month, she begins to cry. She says it's just too much for a single mother who's paying a mortgage, working full-time and taking college classes, to afford.

She brushes the tears away with her forearm and imagines how Theresa, who suffers from muscular dystrophy and chronic respiratory failure, would survive in a nursing home -- the only place Waldspurger says will accept someone in her daughter's condition.

It tears at Waldspurger to think of her daughter living away from home in a group facility, a young vibrant woman surrounded by elderly patients.

She hates to think it would come to that. But if the state does away with its Home-Based Support Services program, which is designed to keep adult children with developmental disabilities at home with their families, Waldspurger fears it could happen.

"I've got a limit. I hate to lose our home, but if I have to, I have to. I will do my very best not to put Theresa into a facility, but how do you do it all? Do I become a street person because I need to take care of her and can't work?

"I can say somehow or another I can come up with this money, but how? I don't know how."

Support at home

The Home-Based Support Services program gives people who cannot support themselves up to $1,635 a month, or a maximum of $19,620 a year, for goods and services, such as home healthcare workers, ventilators and physical therapy. The state then reimburses the providers, such as nurses, for the costs.

The Department of Human Services now wants to switch families using the home-based program to its Supported Living Services program, which is funded by Medicaid waivers, meaning the federal government will reimburse the state for part of the program's cost.

The Supported Living Services program allows families to spend $1,500 a month, rather than the $1,635. Under the new program, the funds can only be spent on services, and part of the funds must be used to pay local agencies to administer the program.

The move comes as a result of agencies across the state cutting their budgets to balance the state's overall budget.

Tom Green, a spokesman for the Department of Human Services, said the proposed program switch prevents his agency from having to cut an additional $2 million from its budget for people with developmental disabilities. Because the state will be using a Medicaid-funded program instead of the home-based program, it will receive partial reimbursements from the federal government to cover the cost.

"The merger and consolidation of them is not actually a move to save money in the budget," Green said. "But it will prevent the department from having to make a budget cut because the department is projecting that at least $2 million more will be realized through Medicaid waivers."

Green added that his department doesn't believe $135 less each month is enough to force anyone from his or her home into an institution or a nursing home.

But the real problem is not the $135 difference, families say. Rather, the new program is funded by Medicaid waivers, said Geri Pinzine, the manager of developmental disability programs for the social service agency Options in McHenry County.

Government regulations state families cannot receive funding from two Medicaid waiver programs. Many of the 1,100 people using the home-based program statewide also use other Medicaid-funded programs. Under the new proposal, they would have to choose between the two.

For example, many Home-Based Support Services recipients at the social service agency Pact Inc. in DuPage County attend a Medicaid-funded day training program that allows their parents to work while they get care and learn skills.

The cost of the day program is minimal, if anything at all, for the users eligible for Medicaid.

Under the new proposal, however, the families would have to pay for the program out of their $1,500 per month -- which amounts to $18,000 a year -- in supportive living funds, said Joe Straka, executive director at Pact Inc., because they cannot get funds from two Medicaid programs.

Taking the cost of the program, which can be as much as $11,000 a year, from the supported living funds would deeply slice into the money families use to pay for nursing care and physical therapy.

Green said that shouldn't be a problem for families.

"That still leaves over $7,000 per year that an individual can direct to other services. An individual may also choose to participate in a day program on a part-time basis, thus leaving more funds available for other services," he said.

But Charlotte Cronin, executive director of the Illinois advocacy group Family Support Network, said often $7,000 is not enough to pay for all of the care patients need. And just saying families can attend the programs on a part-time basis does not take into consideration their individual needs, she said.

"It will be a big blow," Cronin said. "We're talking about people with severe disabilities here, not the easy stuff. Many of our families are saying if they move into the supported living program, they're going to have to consider residential placement instead.

"State officials are deciding on a bureaucratic level what families need," Cronin said. "The very essence of this program we're losing is that families know best."

How it affects a family

In the case of 31-year-old Theresa Waldspurger, who weighs only 35 pounds, who has had a tracheotomy and needs a ventilator to survive, it is a Medicaid-funded program through the Human Services Department's Office of Rehabilitation Services, not a day program, that she depends upon. The program helps pay for Theresa to attend physical therapy twice a week and have around-the-clock care.

What it doesn't cover, about $705 a month, or at least $8,460 annually, the home-based program picks up.

Waldspurger says she can't cut back on either service. If Theresa does not have physical therapy, the woman, who grows weaker each day because of her condition, will permanently lose use of her muscles. And if she doesn't have constant care, Theresa, who cannot lift anything or take care of her own personal needs, could not survive.

Under the proposed switch, the daily care Theresa and others receive also could change.

Supported Living Services restricts who can give care. Under the new program, the caregiver would have to be employed by an agency, such as Pioneer Center in McHenry County.

Geri Composano, a private certified nursing assistant, helps care for Theresa on most days, dressing her, feeding her and taking her to physical therapy. When Geri can't be there, the family hires a neighbor to help Theresa.

Theresa, who often spends her days painting and bird watching, says she trusts Geri with her life and couldn't imagine having to switch to another caregiver.

"I know I can depend on her," Theresa said.

Waldspurger says before they found Geri, they did look at other caregivers. Some wouldn't even look at Theresa, shielding their eyes from the petite wheelchair-bound woman during their interview.

"How can someone like that care for her?" Waldspurger said. "If they get rid of this program, we're not going to find anyone decent for what we can pay.

"It's not like Theresa is a vegetable. She's not just waiting there to die. She contributes a lot through her artwork and her care for other people. And she knows who she needs to care for her. We should have a say in this. It shouldn't be decided for us."

With Geri in the house, Waldspurger says she feels free to work, earning enough to care for Theresa as best as she can. When Geri leaves at 3 p.m., Rally, Theresa's service dog, takes over until Waldspurger gets home from work at 6 p.m.

The Waldspurgers first started using the home-based program more than 10 years ago when they realized a service dog would help with Theresa's care.

About 12 years ago, Illinois House Minority Leader Lee Daniels, who is fighting the proposed funding cuts, sponsored the legislation that created the home-based services funding because he had a daughter with disabilities and felt it was important to keep her home with a loving family.

Back when Daniels first pushed for the program, anyone interested was asked to write a letter saying what they would use the money for.

Theresa said she wanted a service dog -- one that would turn on the lights, open the door for her and call for help in emergencies. The dogs costs between $12,000 and $15,000 because of their extensive training, and her family couldn't afford one.

Her wish was granted, and since that time, Theresa says she's grown to depend on the dog. Just in the past two years, Rally, a golden retriever, has helped save Theresa's life at least twice. Once she fell out of her wheelchair and was unable to get up. Rally brought her the phone to call for help.

Waldspurger says she couldn't afford either Rally or Geri without the home-based program. And under the new program she would have no money left for either because she'd be paying for physical therapy.

If she didn't have someone to care for Theresa during the day then, she said, she'd either have to quit her job or put Theresa in a home.

Fighting the cuts

Jeff Epstein, executive director of Pioneer Center in McHenry County, told a state panel this month that many families face the same dilemma that Waldspurger is facing.

And he says that while state officials may not realize it, they are sending people into facilities where it will cost three or four times more to care for them. In the end, the state will have to pay those bills because their families will not be able to afford it, Epstein said.

Waldspurger said it would cost $3,550 a week, twice what she gets from the state for one month, to put Theresa into a nursing home. She doesn't understand how the state can continue with these cuts, when in the end, it would have to pay out more to care for Theresa.

"If you designed something that would be the worst thing you could think of, this would be it," Epstein said.

Given that Department of Human Services officials don't believe eliminating the home-based program will push families into homes, Green said the state likely won't have any added expenses of taking on new patients.

State Rep. Rosemary Mulligan of Des Plaines disagreed, saying she knows that if families in her Cook County district and elsewhere lose the program, they may be forced to send their children to state facilities, which ultimately would backfire on the state. It doesn't seem right, she said.

"The home-based services is a really big issue because it keeps people out of state facilities and out of much more costly facilities such as nursing homes," Mulligan said. "Sometimes you're penny wise and pound foolish, so we have to go over that."

Mulligan, a Republican who sits on the Department of Human Services appropriations committee, said testimony from families like the Waldspurgers at a hearing earlier this month may have helped. But she says nothing will be final for months.

"Those of us that sat there the whole day walked out very concerned and not quite knowing what we're going to do," Mulligan said. "…It's a very heart-wrenching situation, and nothing is set in stone."

Waldspurger, who testified before Mulligan's House committee this month, said she's doing her best to ensure the program stays intact for Theresa and hundreds of others who need it to live.

"All we can do is make enough noise," Waldspurger said.

Disabled: Committee still considering what to cut