An uphill battle for those caring for people with a developmental disability
Sean Walsh (center), 16, is diagnosed with autism and bi-polar disorder, and has become violent in the last six months. His parents, Michelle (left) and Robert Walsh, say the only hospital equipped to take him and stabilize him had no room when he was in crisis, and he has been turned away from other hospitals.MILLSTONE (Monmouth County) — At least twice a week, panicked parents call Donna Icovino for help.
They’ve heard the Millstone mother lived through her share of struggles raising a child who is "dually diagnosed" with a developmental disability and a mental illness, and the violent attacks that often come with it. At 18, her son, Michael, was committed to a state psychiatric hospital against her wishes after hospital emergency room doctors turned him away because they were unable to handle his aggressive behavior.
Icovino was co-chair of a task force of parents and professionals that in 2008 produced a report called "a landmark effort" by state Human Services commissioner Jennifer Velez, who convened the task force. Her department vowed to make the report a blueprint to beef up sorely needed services.
But two years later, some task force members say little has changed. They say there’s no new money, only a handful of new treatment spots, and no organized process that links families to the fragmented services that exist when a crisis erupts.
"The state’s continued failure to effectively address the urgent and critical needs of children and adults with dual disorders, particularly in times of crisis, is unconscionable and tantamount to the willful disregard and neglect of one of New Jersey’s most vulnerable populations, their families and caregivers," said Icovino, 58.
Human Services officials strongly disagree, saying they have made "incremental progress" on several fronts, spokeswoman Pam Ronan said. "Because parents are dealing with so much, it is understandable that they feel frustration," she said.
The department spent $216,000 to open short-term group home spots for 12 dually diagnosed kids, bringing the state total to 18. For longer-term residential care, it created the Children’s Placement Enhancement Project, spending $11.7 million in state and federal money for 63 children from July 2008 to July 2010, with $13 million planned for the current fiscal year.
The Boggs Center at the University of Medicine and Dentistry of New Jersey trains workers in these specialized group homes, and assesses children before they arrive to develop care plans, Ronan said. The project linked Gerry Johnson’s 10-year-old autistic son, Liam, to a group home in Washington Township, Gloucester County, where the workers quelled his aggressive behavior. "They’ve given me hope," said Johnson.
But Icovino said she knows whatever the state is doing is not working because she’s getting more calls from parents, and they tell her the system is scattered and limited. She noted the new efforts don’t benefit adults.
Advocates estimate there are 150,000 New Jerseyans with intellectual or developmental disabilities such as autism or cerebral palsy, and experts say about one-third of all people with developmental disabilities also have a mental illness.
Treating mental illness is complicated by the fact that people with developmental disabilities usually have difficulty expressing themselves and are hard to diagnose.
Icovino said the state’s new project does not provide psychiatric services. "I have met family members who have waged staggering uphill battles in the hopes of addressing the critical needs of their children, only to be met by insurmountable systemic and bureaucratic barriers," she said.
Sean Walsh, 16, is diagnosed with autism and bi-polar disorder, and has become violent in the last six months. Photos of Sean in happier times are splashed throughout his bedroom. His parents, Robert and Michelle Walsh, say the only hospital equipped to take him and stabilize him had no room when he was in crisis, and he has been turned away from other hospitals.Michelle Walsh said she and her husband, Robert, who is the mayor of Howell, have called police several times when their 16-year-old son Sean has become violent and aggressive. "He is so strong when he is in a rage," Walsh said.
Sean is home after spending two weeks at Carrier Clinic in Montgomery, where his medication was adjusted. He is on several waiting lists inside and outside the state for around-the-clock care and supervision, and the family has hired an attorney to help negotiate with the state and school district.
"Many people have told us to turn our son over to DYFS (the Division of Youth and Family Services)," she said. "That is not the answer — our son needs help and this state needs to help children like Sean."
Cyndy Hayes’ son, Brandon, 20, spent three weeks at a St. Barnabas Health Care facility before going to a state institution when the hospital ran out of options. Hayes, of Princeton, said she then fought for 18 months to get Brandon out of Hunterdon Developmental Center and into a group home.
"The state was spending $350,000 on him at Hunterdon and I had a (group) home waiting for him, at an annual cost of $157,000," said Hayes, a national activist on disability issues. "And yet he couldn’t leave. There is no system, there is no process, just a series of reaction and the Band-Aids the state puts on to help families in crisis."
While nobody knows exactly many people with autism and other developmental disabilities also have a psychiatric diagnosis, the New Jersey Hospital Association says 10,368 patients with developmental disabilities sought psychiatric help from emergency rooms last year — a 210 percent increase from 2005.
Trinitas Regional Medical Center in Elizabeth is the only hospital in the state that operates a dedicated unit for dually diagnosed people — eight beds for kids, 10 for adults, said Jim Lape, vice president, behavioral health and psychiatry. It also runs a mobile team that responds to 1,500 calls a year at group homes and hospital emergency rooms.
Outpatient residential services are scarce, Lape said, because the Medicaid reimbursement is low, and the demands of the work are high. "It’s a very tough population, and most don’t want to deal with that population,’’ he said. "I know there is frustration out there.’’