Like every parent of a child with intellectual and developmental disabilities, Pam Caldwell worries about the day she and her husband will no longer be here to care for their severely disabled 29-year-old twins, Joey and Patrick Lenza.
She thought they’d found a solution for Joey a year ago when the organization that operates the day program he already attends made plans to open a new fully ADA-accessible group home in their Beverly neighborhood.
The group home, which was to be built on the same block where Caldwell grew up, would have been ideal because most facilities can’t accommodate Joey’s physical impairments.
Caldwell admits she allowed herself to get her hopes up.
“It was like too good to be true,” she said.
Months later came word the group home would not be built, another victim of the state’s budget problems.
Envision Unlimited, a non-profit that operates 26 group homes in the city and south suburbs, decided it could not open the new home when it is already facing severe staffing shortages at its other facilities.
Operators of group homes across Illinois say they are facing a staffing crisis because they can’t pay high enough wages to attract workers.
And they say they can’t pay workers more because for nearly 10 years the state has not increased the reimbursement rates it provides for the care of individuals residing in their homes.
As a result, 13 group homes across Illinois have closed in the past year while another 22 have consolidated, according to the Illinois Association of Rehabilitation Facilities.
That translate into fewer group home openings for the Lenza twins and thousands of other families in a state that was already regarded as woefully short of housing opportunities for disabled adults.
Illinois has more than 8,500 individuals with developmental disabilities on a waiting list for residential services. Even when approved for funding, they often have trouble finding a group home in their area that will accept them.
Such is the case with Joey Lenza.
“Most places just say they can’t meet his needs,” said his mother.
Caldwell was 25 weeks pregnant when her boys were born prematurely. Both weighed in at about two pounds and experienced serious brain hemorrhages.
Joey suffers from cerebral palsy, autism and seizure disorders. He is considered severely cognitively impaired and requires a walker. But he can talk.
Patrick is profoundly cognitively impaired and completely non-verbal, but has fewer physical limitations. He wears diapers.
Neither is capable of holding a job, their mother said.
Caldwell, 61, and her husband, Gerald Lenza, 63, an IT consultant, care for the twins at home with the help of two part-time state-funded caregivers.
Caldwell said her husband gets out of bed an hour every night to give Joey his seizure medications.
She said there are facilities downstate that might accept Joey but that she doesn’t want to move him to where she “wouldn’t be able to stay in his life.”
She knows the time may come when she has no choice, which is why the prospect of Envision opening an accessible group home in the neighborhood was so exciting.
Mark McHugh, president and CEO of Envision, said staffing shortages left him no choice but to scrap the plans. Envision pays its group home workers $12.05 an hour, more than the $9 rate typically paid downstate, but not enough to compete with other employers vying for the same workers, he said.
McHugh said group home operators are asking the state to raise reimbursement rates enough to allow them to pay workers up to $15 an hour. That would cost $330 million a year, half of which would be repaid by the federal government, he said.
“We’re balancing the budgets on the backs of the most vulnerable,” Caldwell said. “Nobody cares.”
I know some of you care, and this would be a good time to let it be known.