The largest provider of respite care services in the south suburbs, Good Shepherd Center headquartered in Hazel Crest, has laid off all of its employees who provide in-home care for individuals with cerebral palsy, autism, epilepsy and other developmental disabilities due to the state budget crisis.
These are trained care givers who for a few hours, one or two days a week, come into the home of a family with a developmentally disabled child so their parents can go grocery shopping, attend the soccer game of another son or daughter, go to a family wedding or simply have a rare night out for themselves.
Fifty Good Shepherd staff members, three full-time, were notified that as of July 1, due to state funding cuts, the respite program would be shut down. Brendan McCormick, executive director of Good Shepherd, said his organization serves about 300 families from Chicago’s Beverly and Mount Greenwood neighborhoods on the north and to the Indiana border on the south, including suburbs in Will County. McCormick said his organization received approximately $425,000 a year in state grants to provide respite care for all of south suburban Cook County.
A spokeswoman for the Illinois Department of Human Services said Good Shepherd Center is the primary provider of respite services in the south suburbs, received a contract for fiscal year 2016, which started July 1, signed it and returned it. However, Good Shepherd will not get reimbursed for any services provided until a state budget is passed, the spokeswoman said. When a budget is passed Good Shepherd will be reimbursed for any services provided.
McCormick said that unlike other not-for-profit agencies trying to make it through the crisis, his organization has no buildings or land which it can use to get bank loans. “We rely on state funding and have no other source of financing until the state provides us with the money we need.”
Jennifer Brown of Oak Forest was one of the recipients of respite care through Good Shepherd. Her 6-year-old daughter Lily has Rett syndrome, a rare genetic disorder that affects the way the brain develops. She can’t talk, use her hands or walk. She also has a feeding tube.
“So it’s not like we can call a teenager down the street if we need a baby sitter,” Mrs. Brown explained. “You have to have someone who is trained with dealing with a child who has a developmental disability and someone you can trust, and Good Shepherd has excellent people who they screen and have special training in this sort of thing.
“We have another child, a daughter, and there are times we want to focus some attention on her. For instance, this summer, she wanted to go to the beach. Lily can’t be out in the sun and 95-degree heat. And it’s just difficult to roll a wheelchair onto a beach. So we might use the respite care worker to care for Lily while we went to the beach with our other daughter for the day.
“Or we might want to take Lily’s sister to the movies once in a while. Lily isn’t good in movie theaters. She gets restless. She can’t sit through an entire movie without squiggling around and that might annoy other moviegoers. So we would use respite care for a few hours to go to the movies.
“And sometimes you might just want to have a quiet family dinner. Spend some time giving attention to each other instead of worry about the child who needs special attention.
“We have parents that help us out, but Lily needs to be carried everywhere, and that’s a lot to ask of people who are getting older,” Brown said.
Without the services of the respite care givers, Brown said its likely her family will “simply stay home a lot more” and rely on friends and neighbors to help out.
“Our hope is that people in Illinois step up to the plate, not just the families of the developmentally disabled, and say that cutting these funds is wrong,” Brown said. “We’ve been calling our state legislators and the governor’s office, but we need other people to join us. I realize the state is in financial trouble and cuts are going to have to be made. But making them here, where they impact the families of disabled children, just doesn’t seem fair.”
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McCormick said many families, without respite care, will likely have to place their children in state-supported group homes.
“Respite care costs an average of $2,000 per family,” McCormick said. “A group home would cost $60,000 a year. So it just doesn’t make sense financially to make the cuts in a program that keeps children at home where their parents can care for them.”
McCormick said the general public may not understand the pressures that having a child with autism can place on a family.
“You’re always finding yourself checking on the child with special needs and sometimes that’s at the cost of paying attention to other children in the family, or your spouse,” he said. “About 60 percent of the people using respite care are single-parent households. So if you’re a parent who works until 5 p.m. and your child gets home from school at, say, 3 p.m., you might use a respite care worker for a couple of hours until you get home. Now you may have to say to your boss that you need to reschedule to get home earlier. And maybe your boss doesn’t want to do that. So now you’re facing a choice of whether to change jobs or care for your child or place your child in a group home.
“That’s what these cuts will mean for some families. We’ve been in business since 1963 and this is the worst situation I’ve ever seen in the state of Illinois. I don’t know what to tell people. I don’t know if we will still be in business in another month.”
Kelly Turner of Frankfort uses respite care services to help out with her 11-year-old daughter Maya, who has 1p36 deletion syndrome, a congenital genetic disorder characterized by moderate to severe intellectual disability. Maya also has epilepsy. She is non-verbal and wheelchair bound.
“We have two other daughters and they’re just like any other children with soccer, gymnastics and all sort of other activities that we, as parents, want to attend to show our support,” Mrs. Turner said. “So we use the respite care services to get out of the house for a few hours to participate in those athletic events. Sometimes we tag team, my husband and I, but sometimes you want to go as a family. Sometimes you have doctors appointments of your own you have to tend to and the other parent is working and can’t stay home.
“What people need to understand is that these cuts are hurting entire families, not just the kids who need special care.
“We’re fortunate in that we have an income that will allow us, to some extent, to go out and pay for the services of a care giver. But now we’re going to have to start budgeting for that. And I know there are many families in this situation who don’t have the money to hire someone on their own. There are parents out there really struggling to keep their families together and they need this little bit of help.”
Under the state guidelines, families are limited to 180 hours of respite care a year, or 360 hours if they qualify under a crisis provision, McCormick said.
Ricardo Correa of Midlothian has a 5-year-old daughter with no specific diagnosis, “but he can’t talk, walk or communicate, except with his eyes,” Correa said.
“If we have a family wedding, she just can’t attend for more than an hour or two,” Correa said. “If we need to go shopping or something we might need a person with special training to take care of her because you just can’t ask the 14-year-old down the street to baby sit a child with those kinds of challenges. You need someone who is qualified. And Good Shepherd’s people are trained to deal with the developmentally disabled. We’ve come to trust them.
“Some of these people, the respite workers, have let us know they’re willing to work for us if we pay them because right now they have no jobs,” Correa said. “They offered to help us out because they know we need them. So maybe I will pay them out of my own pocket, but when you’re the parent of a special needs child there are a lot of expenses that other people don’t have.”
McCormick said the governor’s budget proposal eliminated his organization’s respite care funding and the state Legislature’s budget, rejected by the governor, would have cut his funding about $100,000 a year. The Illinois Department of Human Services has given him no indication it plans to send any grant money to Good Shepherd for respite care.
I know voters want their taxes lowered. I know they want the fat cut out of the state budget. I know they don’t trust the Democrats in Springfield.
But is this really what you want? If not, you had better let the governor and state lawmakers know because as they argue about the finer points of term limits, property tax freezes, pensions and collective bargaining, people are suffering. This is about tiny children with disabilities and the parents trying to care for them at home. Elected officials are supposed to represent us. So is this what we want?.Your silence means you agree.