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Budget Cuts Brought Home

Cuts For Disabled Care Drastically Affect Families

Kathy Waters/Highlands Today

Jill Lukaszewski interacts with her personal care assistant at her home in Sebring. Lukaszewski used to receive more than 200 hours per month of in-home care, but a new laws restrict the amount to only 180 hours per month.

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By Dan  Fearson | Highlands Today

Published: October 7, 2007

SEBRING — Daily diaper changes are just a small sample of the amount of work it takes to raise two middle-aged adult siblings who suffer from severe Cerebral Palsy and have the mental makeup of 8-month-old babies.

Scott Lukaszewski, 41, and his sister, Jill, 38, have fought hard against the odds and lived relatively healthy lives, even though they do virtually nothing on their own.

And although the siblings cannot speak for themselves, according to their father, the Florida Legislature has decided that budget deficit issues will come before their personal care.

On Sept. 26, Mike Lukaszewski, 66, received a letter from the Agency for Persons with Disabilities- State of Florida, which said that each child he cared for would be getting a two hour per day cut in personal care assistance per month. The care each sibling would get was now going from 212 hours per month to 180.

The notice Mike received told him the hours would be cut on Oct. 1. The retiree from Indiana, who already has a difficult time taking care of his children with assistance, was left angry.

"It's easy to sit behind a desk and decide how a person is going to be cared for," said Mike. "It makes me sick. (The Legislature) is not out for the care of their own citizens, they're out for the care of their budget."

In early May, the Legislature approved the 2007-08 budget for the APD, which included limits in the amount of hours residential habilitation services could be given. Limits were also placed on the number of personal care attendant hours a person could receive. The budget changes were part of the APD's Medicaid Waiver program.

"My kids require 24-hour-per-day care. It's a lot of stress," said Mike. "I'm fine with taking care of them, because I've made a choice that they'd be better taken care of at home compared to in an institution, but I don't know how I'm going to be able to deal with this cut."

"It's almost like being penalized because they're handicapped. It's like they're trying to tell me that my kids are suppose to lie in a bed all day and do nothing."

A Daily Routine

It's the same thing every weekday for Janice Levene, a care assistant for Visions Inc., of Sebring, who arrives at the Lukaszewski house by 7:30 a.m.

Visions Inc. provides the care that the Lukaszewskis received and is regulated through the APD.

Levene has been working with the siblings for three years. She is now considering looking for a second job because of the cuts in her hours.

"In a way, it has left me in a bind," said Levene, who admits that she fears more for the welfare of her clients than her own losses. "Yeah, it's harder because I have to do more work, and I'm feeling some financial loss, but considering everything, this gives me less time to interact with the kids, which is not in their best interest."

Levene now has to condense an already busy schedule into a smaller time frame.

The siblings are usually up by 8 a.m., when Levene removes their bed blankets because they're usually soiled. She has to lift the siblings out of bed.

On Monday, Wednesday and Friday's, it's bath day.

"Jill is deadweight," said Levene. "She doesn't help you out at all when you try to lift her. You don't realize it by looking at them, but the kids just lay there when you move them."

A Continuous Routine

The kids are given breakfast and placed in their wheelchairs. Sometimes they get to go outside, into the garage or lanai. But the kids can't stay in their wheelchairs for more than an hour at a time, so they are often placed on the living room floor for exercise. This routine continues throughout the day.

"Sometimes they listen to music or to the television. Scott loves his music, but he can have days where he's moody and will have nothing to do with you," said Levene. "Jill really loves the 'Price is Right.' She likes the sounds from the show."

"I think there's more going on in their heads than people think," said Levene. "It's just that they can't express themselves other than by smiling or acting moody. They need companionship, just like any human does."

Around noon the kids are placed back into their beds, where they are given a smashed lunch and fed like babies. Levene and Mike also do laundry and clean up the household during this time.

In the afternoon the routine continues. The only difference is the meal. The kids are in and out of their beds and wheelchairs. The caregiver typically leaves the home by 5 p.m.

"I feel so bad sometimes, because these kids don't have a voice," said Levene. "I really hope that people see their story and someone comes forward to give them one."

A Sister's Story

Not only does Laurie Lukaszewski have to worry about her siblings' health, she now has to worry about her own future.

It was only a few months ago that Laurie, who is going to school to become a paralegal, was getting ready to purchase a home. But before she could close on the house, the APD's newly adopted budget came out. Her dreams of owning the home went down when her hours reduced.

"I've always felt like caregivers were underappreciated and under-funded by the government," said Laurie, who also works at Visions Inc. "But now I feel that way more than ever."

Laurie splits time with Levene taking care of her siblings through the company. ADP is cutting more than $75.7 million to private providers like Visions. The cuts are a result of the agency's $156 million deficit.

"The worst part about the whole thing is that we're now expected to do the job of two people," said Laurie. "It doesn't make sense. It's almost like (the Legislature) is telling you that they should be institutionalized, which would be worse for them."

"You hear so many stories about abuse in the institutions and the cost is a lot more … I don't understand their thinking," said Laurie.

What It Means

"There are people who can get by without the hours and there are people who need to receive them," said Barbara Cook, the director of Visions, referring to caregivers.

"From a financial and business perspective, I can understand the reductions," said Cook. "But from a human interest point of view, I cannot."

"I can understand Mike's situation. Due to his physical ability and the fact that he has two kids with disabilities, he needs more assistance than most people," said Cook.

Cook said that of the 50 clients she currently has, only two had their assistance hours reduced. The APD sent out more than 12,000 reduction letters like the ones sent to Mike.

"I attend provider meetings and try to keep up to date on all the changes that are taking place," said Cook. "We're trying to be proactive and be an advocate for the people we serve. We want to actively help them and we tell them about contacts within the APD, and the appeals they can make if they have concerns."

"Locally, the numbers of clients receiving the reductions are not as high as (as compared to other areas in the state)," said Eric Olsen, an APD program administrator for Polk, Hardee and Highlands County.

Fighting The Reductions

Lukaszewski has filed appeals paperwork with the APD for both siblings. He has said that he's unsure how long it will take to hear back from the agency.

Olsen said besides an appeal, a person can also ask for emergency consideration from local service areas, which are reviewed by medical case managment teams.

"We have the ability in an emergency situation to take into consideration more assistance for a client," said Olsen. "Our goal is to make sure that a client's health and safety are not in jeopardy."

Linda Mabile, the APD's bureau chief for home and community based services, recently said in a newspaper interview that there will be a sufficient level of services for clients through the cutbacks.

"I think it's fair to say that our system in general needs to have a little more structure added to it, and that's what we're working with the Legislature and our stakeholders to provide," said Mabile.

State Rep. Bill Galvano, R-Bradenton, who helped restructure the budget, has said that efforts were made to reduce the amount of stress the cutbacks would have on the agency's clients.

"Cuts are cuts, and they were not easy to make," said Galvano.

"It's very sad that we can give billions of dollars to aid other countries, yet our own Legislature here has no concern for the needs of their own people, especially those who are incapable of doing anything for themselves," Mike said.

Mike is currently asking anyone who is outraged by the cuts to call their local legislative leaders and Gov. Charlie Crist. He said he would also like to field phone calls from the community and people who may be in similar situations. Lukaszewski can be reached at (863) 273-9041.

Information provided by the Associated Press is contained in this article.

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