BUFFALO, N.Y. (WKBW) — Doctors told Barb and Bruce Kazmierczak of West Seneca that their son Joey may not live past birth-- but on January 25th he is celebrating his 20th birthday.
"He just doesn't understand the word 'no' or 'quit,'" Barb Kazmierczak, Joey's mother said. "He just wins every battle, he fights, he just keeps on going."
Joey was born with a rare chromosomal disease called 4Q Deletion, affecting every part of his body. He needs constant care as he cannot perform some everyday tasks by himself. He suffers from seizures, a heart condition, and eats through a tube, all while keeping a smile on his face.
"He's just happy and living life to the fullest," Daryl Miller, Joey's home nurse, said. Miller has been with the Kazmierczak family since Joey was brought home from the hospital. She has been a nurse for 50 years, serving in the Army Nurse Reserve and in other nursing homes.
She takes care of Joey at night, giving him food and medicine.
"I was here at Joey's beginning and I'm going to be here for as long as I can physically can be here," Miller said.
Many children are in the hospital waiting for a nurse like Miller, so they can leave the hospital and receive treatment within the comfort of their home. The number of home nurses has reached a critical point, Miller said, as many families are struggling to find home nurses to take care of their children.
According to research published by the Journal of Hospice and Palliative Care, 40% of families that could leave the hospital did not because of the lack of home nurses. The study also found that families stayed in the hospital 20 more days than they needed because there were no home nurses.
"There are patients sitting at hospitals right now that are costing New York State thousands of dollars a day," Miller said. "The only reason they are still there is because there is no home nurses to take care of them at home."
A major reason for the shortage is nursing salaries for LPNs (licensed practical nurses) haven't changed since 1999, Miller confirmed. Michael Reda, president and owner of Aurora Home Care, says medicaid reimbursements have not increased in part due to a lack of lobbying efforts to increase wages.
Nurses can be hired directly from the families or through an agency. The nurses do not receive any benefits and, according to Miller, sometimes feel guilty taking days off.
"As far as medicaid is concerned we are a service provider just the same as a pharmacy who brings you something." Miller said.
Reda says his company's home care nurses make about $22 an hour-- and that's without any benefits. Home nurses see their pay drop even more when you factor in social security, health insurance and taxes. As for why pay hasn't increased, Reda blames two things: lack of lobbying on behalf of home nurses and state budget restraints.
"Medicaid also has to pay for people in nursing homes and there are x-number of dollars so they are trying to spread it as thin as they can," Miller said. "I think it's going to get worst because New York State is really hurting as far as medicaid they have a very generous medicaid program."
Miller has not seen an increase in her paycheck in 20 years, but says she wouldn't trade her job for the world. Some of the benefits of working as a home nurse is the flexibility of the hours and the relationships nurses build with the families, Miller added.
"I can play a game with him, I can interact with the parents, I can do extra projects with Joe, we can just snuggle-- it becomes more personal," Miller said.
The Kazmierczak's have four nurses taking care of Joey weekly but would like to hire two more. They all work as a team, to make sure Joey keeps his infectious smile on his face.
"They are the front line and they are also the last line of defense with your child in your home." Kazmierczak said. "It's always easier to be sick at home and there is a lot more freedom at home."
Families hire nurses directly with listings on Craigslist, Facebook or sometimes in the newspaper or through an agency like Aurora Home Care.