From the Scarlett Scuttlebutt in N.J.:WOODBRIDGE — John Zalenko (pictured with his mom) comes home from school around 3 p.m. each day. His mom, Cookie Zalenko, greets him at the door.
"Do I get a kiss?" she asks, and her son complies, leaning in and kissing her left cheek before quickly pulling back.
"I want bologna" he says.
Cookie Zalenko asks him to say hello to a guest.
"I want bologna!" he says louder. "Cheese!"
Minutes later, the 23-year-old township man is sitting at the dining room table, happily munching on rolled-up slices of bologna and cheese.
Zalenko has autism, cerebral palsy, a seizure disorder, scoliosis and Attention Deficit Hyperactivity Disorder. Under a federal law originally enacted in 1975, states are required to educate children with disabilities. But that law, now called the Individuals with Disabilities in Education Act, only applies until the child reaches age 22.
At that point, responsibility for the grown child shifts entirely to the parents.
John Zalenko lived in his parents' Woodbridge home until 2000, when he moved to a group home in Howell for individuals with mental disabilities. It was a difficult decision for the Zalenkos to send their then-13-year-old son to live away from home, they said, but taking care of him alone became implausible as he grew up.
"We didn't want to send him. But everybody was telling us it's going to be better, it's going to be better," said Gary Zalenko, who runs his own carpentry business and often works odd hours. "If I could stay with John, I would stay with him constantly. But I just can't do it."
The state Division of Developmental Disabilities provides public funding to assist adults over age 21. While the federal education law specifically mandates the state's responsibility for children with disabilities, the DDD's role is not required by law. Money to educate children with developmental disabilities comes directly from the taxpayers in the child's home school district.
But taxpayers don't have the same responsibility for disabled adults in their neighborhoods.
That means adults with severe developmental disabilities often do not receive the care they need. There's not enough money for it.
The DDD's $1.35 billion budget accounts for about 4.1 percent of the total state budget passed for fiscal year 2009. Within the DDD budget, $509 million goes toward 950 residential programs statewide serving an average of two to five residents apiece.
But at the end of 2008, the DDD's waiting list was 7,834 names long. Of those, 4,178 were on the list's "priority" section, which means that both parents are older then 55 or there are special circumstances. The individuals on the waiting list receive some state services but either need additional services or residential placements.
"Some people are on waiting lists for a very long time," said Pam Ronan, a spokeswoman for the state Department of Human Services, which runs the
Division of Developmental Disabilities.
Middlesex County is home to 64 residential programs — many of which focus on specific disabilities.
For years, John Zalenko lived comfortably in Devereux Intensive Group Home with three others. But in late 2008 his seizure disorder became worse and he became too much for the staff there to handle. He began suffering from atonic seizures — more commonly known as "drop seizures" — in which his muscles suddenly lose strength and he drops to the ground.
On her weekly visits, Cookie Zalenko often noticed new bruises along her son's arms and legs. In June he fractured his arm, and then on Oct. 1 he fell down a flight of stairs.
After the Oct. 1 incident, the Devereux staff determined that the residence was not equipped to care for Zalenko. He spent some time in the hospital and returned to his parents' home Oct. 8.
He continues to attend a day program for adults with autism. The extended-year program, through Neptune-based New Horizons in Autism, teaches basic living skills such as cooking, computers and counting. But at the end of the day, the bus drops him off in Woodbridge rather than the group home.
Medicaid pays for the day program and transportation, and also pays for a home health aide to help Zalenko's parents weekday mornings and four hours on Saturdays and Sundays. The DDD pays for a health aide to visit each afternoon.The state is looking for an appropriate residential placement for Zalenko, but vacancies are rare. And in the meantime, Cookie Zalenko watches her son closely every moment he is home. He takes time to warm up to new people, so the health aides have trouble working with him. And although his muscles are weak, he isn't confined to a wheelchair, so he often stumbles abruptly across the hardwood floors in the two-story house.
He needs help performing basic tasks such as showering, going to the bathroom, getting dressed, eating, taking medicine and getting into bed.
"I'm waiting, I'm waiting," said Cookie Zalenko, who quickly becomes emotional when she starts to think about her son falling down the stairs.
She shook her head and cried. Then she became angry.
"In the meantime, he's going to crack his head. How much longer can I wait?"
Cookie and Gary Zalenko already lost one son. Their oldest son, Gary, died of an accidental overdose two years ago, at age 28. He was in his bedroom when it happened.
So John Zalenko sleeps sandwiched between his parents in their king-size bed each night because Cookie doesn't want him to fall to the floor, or worse, get up in the middle of the night and try to walk downstairs by himself. The main stairs have a wall on one side and no rail on the other.
"I feel like they're leaving him to die," she said.
The state offered an emergency placement in Ocean County in November, but Cookie Zalenko declined, saying the environment wasn't safe for her son's condition and it was too far from his family and his doctors, who are in New Brunswick.
"If the division offers a particular placement and the family doesn't want it, the family doesn't have to take it," Ronan said. "We look for different options to support the person while they're still in the home and while we seek an appropriate placement for him."
In the meantime, John Zalenko loves being home. He's spending more time than ever with his parents and his 22-year-old brother, Joseph, who helps him out of the bus each afternoon. His mom prepares his favorite snack of rolled-up bologna and cheese, and he flips through magazines or watches TV until dinner. On a recent Friday he sat on the couch next to Joseph, smiling and watching TV.
"He's a handful," Gary Zalenko said, looking over at his sons. "But he's a good kid. He's got a lot of affection."
