For tens of thousands of New Jersey children facing developmental disabilities and their families, the difference between a healthy, happy life could be a phone call.
Experts have long known that the sooner a youngster with developmental challenges is evaluated and treated, the better the likely outcome. And in New Jersey, a hotline service is available to help parents and caregivers get answers and connect with critical services early on. Another program will help families and disabled youth as they grow and mature.
Developed decades ago, the early intervention system is now led by the state Department of Health, with support from the Department of Children and Families. The system depends on more than $660 million in state and federal funds — an increase of more than $28 million over last year — that pay for state oversight; contracted care management services; and scores of regional, county, and local programs designed to help kids overcome developmental disabilities that range from severe to mild. They can range from feeding problems, sensory issues, delays in speech or walking, and cognitive development. They also address behavioral-health issues, substance-use disorders, and other concerns to assist families on what is often a difficult journey.
Many of the milder issues, if addressed while the brain is still developing, can be treated successfully before they become serious problems. With severe disabilities, the problems are best addressed as soon as possible in order to have better prognoses.
“The State of New Jersey is unique,” explained Dr. Ankur Desai, a child psychiatrist and medical director for PerformCare New Jersey, a company that manages care for more than 50,000 children with developmental disabilities, behavioral-health issues, and substance-abuse disorders. ”Other states don’t have this type of system of care for children.”
Historically, there was a huge stigma attached to developmental disabilities, Desai said. But research has shown that individuals with disabilities can lead full, productive, and often independent lives, if provided proper treatment and support, he said. New Jersey was an early adopter of these methods and the system has continued to evolve, as substance abuse and other issues become more common. They program is also linked to the education system for school-age children.
“The prognosis for a lot of these children is generally positive,” Desai said. “If they get the help early, and they get the right kind of help, I think you can be very positive and optimistic about how they will do.”
“The rule of thumb is, the earlier you can intervene, the better chance you have of impacting the child,” he added. “The younger a child, the more plastic and flexible their neurological system is.”
Kevin Casey, executive director for the New Jersey Council on Developmental Disabilities, agreed early intervention is a crucial first step, particularly for young children and their families. Not only can professionals get a handle on the full scope of a child’s disability, but also parents and caregivers can learn how they can help with the treatment by integrating therapeutic behaviors into their everyday routines. “Really, the earlier that parents can utilize early intervention services, the better the future will be for their children,” Casey said.
In 1993 the health department was designated as the lead agency within the state’s network of early intervention services. The system’s mission is shaped in part by federal laws that require states to help disabled individuals live and learn in the least restrictive environment possible, overseen by state officials, and dependent on a web of county organizations, nonprofit groups, and community-based programs. The state provided $97.3 million for the DOH program in the current fiscal year, the same level budgeted in FY2016.
Using this system, the health department screened tens of thousands of youngsters for potential disabilities and provided services for more than 24,000 children under age three, spokeswoman Nicole Kirgan said. Once caregivers call the state’s toll-free hotline – 1-888-653-4463 – they’re referred to a doctor or clinic in their area that can assess their child for issues related to speech, learning capacity, sensory response, and much more. If needed, families will be connected with therapy or other services, either in their home or nearby.
The New Jersey Early Intervention System is open to anyone, regardless of ability to pay, Kirgen said. Program officials will help low-income families enroll in Medicaid, if needed, which covers many of the services. They will also help parents and guardians work with private insurance plans. Since 2004, the state has also charged families a fee on a sliding scale based on their size and income, she said.
[related]Families with older children who have more complex needs may be referred to the New Jersey Children’s System of Care, a comprehensive suite of services overseen by the state Department of Children and Families. The state budgeted more than $540 million for the system this current fiscal year, including more than $360 million in state dollars – an increase of more than $28 million over 2016 – with the balance coming from federal sources.
The funds provide for a wide variety of county and community programs and support services coordinated on a regional basis and individual care plans managed by PerformCare. The system includes mobile response units that can be dispatched to a home within 24-hours to help family members stabilize children in a crisis; family support organizations that can assist and educate caregivers; and therapeutic services to address behavioral health concerns, addiction issues, and the challenges posed by intellectual and developmental disabilities. Sessions are held at community sites or in the family home, depending on the child’s needs.
“Early Intervention services provided by the Department of Health are all about laying the groundwork for future (child) development,” explained Casey, with the developmental disabilities council. “DCF is more about providing ongoing support for families as their children continue to grow.”
Desai, with PerformCare, said the response to these early interventions conducted under the Children’s System of Care, in DCF, could range from an immediate trip to the emergency room for medical intervention to calm a severely agitated child to providing a list of phone numbers for additional services. The middle ground is more common, he said, and often involves a few hours a week of family therapy, a recommendation for special equipment, or a trip to a specialist for individualized care. Respite care for caregivers and group programs for youngsters are also available, if appropriate.
Families with older children, or those who are already part of the Children’s System of Care, can also call PerformCare’s 24-hour a day, 7-day a week hotline: 1-877-652-7624.
“Our goal is to explain what we feel is going to be helpful for their child and put it into action. But it has to be completely in collaboration with them, in consent with them,” Desai said. “And if things go the way they should, families are grateful.”