A2388

An Act establishing the New Jersey State Neurodevelopmental Disabilities Institute, supplementing Title 26 of the Revised Statutes, and making an appropriation.

Be It Enacted by the Senate and General Assembly of the State of New Jersey:

1. This act shall be known and may be cited as the “Neurodevelopmental Disabilities Institute Act.”

2. The Legislature finds and declares that:

a. Neurodevelopmental behavioral problems, which are often categorized as “neurodevelopmental disabilities” or “developmental behavioral disabilities,” affect an estimated 35% to 40% of all children nationwide and include such conditions as autism, mental retardation, cerebral palsy, hearing impairment, vision impairment, learning disabilities, attention deficit hyperactivity disorder, and other mental health conditions;

b. These disabilities take a severe toll on the child with the disability, the child’s family, and society in general, not only in terms of the emotional burden that they impose but also in view of the financial resources that are required to meet the needs of the affected individuals and the loss of productivity stemming from their inability to fully contribute to the economy and society;

c. New Jersey has made a significant commitment of resources to assist individuals with these disabilities, including the establishment of a Statewide system of early intervention services for eligible infants and toddlers, and the provision of special educational services, employment assistance, recreation, technology assistance, and other accommodations to meet the needs of these individuals;

d. In spite of the efforts at prevention of neurodevelopmental disabilities at the federal and State levels, the relevant data indicate an increasing prevalence, if not incidence, of these disabilities;

e. Early intervention has been demonstrated to maximize the potential of children with these disabilities and to minimize their dependence on society, but early intervention requires early identification;

f. The federal and State governments and health organizations have sought to improve screening methods; and, as a result of these efforts, many, but not all, children who are possibly affected by these disabilities are being identified on a timely basis;

g. Early intervention programs have been helpful in confirming developmental delays and providing developmental services; however, they do not provide medical diagnostic or management services, which are critical to the long-term well-being of the child and the child’s family;

h. Primary care physicians often screen for developmental disabilities but are unable to provide neurodevelopmental diagnostic or management services, due primarily to a lack of time and training;

i. The families of children with neurodevelopmental disabilities struggle mightily to find diagnostic services in a timely manner, with the estimated waiting time for a child to receive these services ranging from six months to more than one year; and, with the increasing prevalence of neurodevelopmental disabilities and decreasing reimbursement for medical care of persons with neurodevelopmental disabilities, these families are experiencing a severe shortage of medical diagnostic and management services; and

j. There is a clear and compelling need for the establishment of a comprehensive Statewide Neurodevelopmental Disabilities Institute to provide: neurodevelopmental diagnostic services to children in a timely manner; ongoing medical and non-medical management services to children with neurodevelopmental disabilities; training to pediatric residents and other primary care residents to enhance their knowledge of children’s developmental and behavioral issues; training to pediatricians in the subspecialties of neurodevelopmental disabilities and developmental behavioral pediatrics to equip them to work for the institute, and reduce the waiting time for neurodevelopmental diagnostic and management services; and support for research into the causation, prevention, and treatment of neurodevelopmental disabilities.

3. As used in this act:

“Commissioner” means the Commissioner of Health and Senior Services.

“Institute” means the New Jersey State Neurodevelopmental Disabilities Institute established pursuant to this act.

“Neurodevelopmental disability” means a developmental disability as defined in section 3 of P.L.1977, c.82 (C.30:6D-3), or another neurodevelopmental or psychiatric disorder generally diagnosed in infancy, childhood, or adolescence, which is included in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, including, but not limited to, attention-deficit and disruptive behavior disorders, communication disorders, feeding and eating disorders, elimination disorders, learning disorders, motor or tic disorders, and pervasive developmental disorders.

4. a. There is established the New Jersey State Neurodevelopmental Disabilities Institute at the University of Medicine and Dentistry of New Jersey. The institute shall be comprised of three regional centers, located at the University of Medicine and Dentistry of New Jersey-New Jersey Medical School in Newark and the University of Medicine and Dentistry of New Jersey-Robert Wood Johnson Medical School in New Brunswick and Camden, which shall be responsible for serving the northern, central, and southern regions of the State, respectively.

b. The purpose of the institute shall be to:

(1) provide medical assessment and diagnosis of neurodevelopmental disabilities in infants, children, and adolescents throughout the State;

(2) provide ongoing management and early intervention services through the institute; and

(3) provide training opportunities for developmental and behavioral pediatricians and neurodevelopmental pediatricians from all regions of the State.

c. The institute shall be headed by a full-time director who is a physician licensed in this State and qualified to assume the responsibilities of the position, to be appointed by the President of the University of Medicine and Dentistry of New Jersey with the approval of the Commissioner of Health and Senior Services.

d. The institute shall carry out its responsibilities pursuant to subsection b. of this section under the programmatic guidance and direction of the commissioner, in consultation with the Commissioner of Human Services.

The institute shall:

(1) submit to the commissioner and the Commissioner of Human Services a plan for carrying out its responsibilities pursuant to subsection b. of this section, in accordance with requirements to be specified by regulation of the commissioner no later than the 120th day after the effective date of this act, and shall update that plan periodically as the commissioner may require; and

(2) report annually to the commissioner and the Commissioner of Human Services on its activities pursuant to subsection b. of this section and include such information as the commissioner shall prescribe by regulation.

e. In the fiscal year next following the effective date of this act and each succeeding fiscal year, the Governor shall recommend and the Legislature shall appropriate to the Department of Health and Senior Services such amounts as may be available to effectuate the purposes of this act, which the commissioner shall allocate to the institute in accordance with the plan developed pursuant to subsection d. of this section.

f. The commissioner, in consultation with the Commissioner of Human Services and pursuant to the "Administrative Procedure Act," P.L.1968, c.410 (C.52:14B-1 et seq.), shall adopt rules and regulations to effectuate the purposes of this act.

5. The institute, in consultation with the commissioner and the Commissioner of Human Services:

a. shall apply for any grants from federal government agencies and nonprofit foundations, and shall seek to obtain any donations from corporations or other entities, as may be available to provide monies in furtherance of the purposes of this act; and

b. is authorized to accept any grant, devise, bequest, donation, gift, services in kind, assignment of money, bonds of other valuable securities, or monies appropriated for the purposes of this act or otherwise received, in furtherance of the purposes of this act.

6. There is appropriated $6,000,000 from the General Fund to the Department of Health and Senior Services to effectuate the purposes of this act, from which amount the Commissioner of Health and Senior Services shall allocate funds to each of the three regional centers of the institute designated in section 4 of this act in accordance with the plan developed pursuant to subsection d. of that section.

7. This act shall take effect on the 120th day following enactment, but the Commissioner of Health and Senior Services may take such anticipatory administrative action in advance as shall be necessary for implementation of the act.

STATEMENT

This bill, which is designated the “Neurodevelopmental Disabilities Institute Act,” establishes the New Jersey State Neurodevelopmental Disabilities Institute.

The bill provides specifically as follows:

· There institute is to be established at the University of Medicine and Dentistry of New Jersey (UMDNJ) and be comprised of three regional centers, located at UMDNJ-New Jersey Medical School in Newark and UMDNJ-Robert Wood Johnson Medical School in New Brunswick and Camden, which will be responsible for serving the northern, central, and southern regions of the State, respectively.

· The purpose of the institute is to:

-- provide medical assessment and diagnosis of neurodevelopmental disabilities in infants, children, and adolescents throughout the State;

-- provide ongoing management and early intervention services through the institute; and

-- provide training opportunities for developmental and behavioral pediatricians and neurodevelopmental pediatricians from all regions of the State.

· The bill defines “neurodevelopmental disability” to mean:

-- a developmental disability as defined in the “Developmentally Disabled Rights Act,” P.L.1977, c.82 (C.30:6D-1 et seq.); or

-- another neurodevelopmental or psychiatric disorder generally diagnosed in infancy, childhood, or adolescence, which is included in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, including, but not limited to, attention-deficit and disruptive behavior disorders, communication disorders, feeding and eating disorders, elimination disorders, learning disorders, motor or tic disorders, and pervasive developmental disorders.

· The institute established under the bill is to be headed by a full-time director who is a physician licensed in this State and qualified to assume the responsibilities of the position, to be appointed by the President of UMDNJ with the approval of the Commissioner of Health and Senior Services.

· The institute is to carry out its responsibilities under the programmatic guidance and direction of the Commissioner of Health and Senior Services, in consultation with the Commissioner of Human Services. The institute will:

-- submit to the Commissioners of Health and Senior Services and Human Services a plan for carrying out its responsibilities pursuant to the bill, in accordance with requirements to be specified by regulation of the Commissioner of Health and Senior Services no later than the 120th day after the effective date of the bill, and is to update that plan periodically as the Commissioner of Health and Senior Services may require; and

-- report annually to the Commissioners of Health and Senior Services and Human Services on its activities and include such information as the Commissioner of Health and Senior Services prescribes by regulation.

· In the fiscal year next following the effective date of the bill and each succeeding fiscal year, the Governor is to recommend and the Legislature is to appropriate to the Department of Health and Senior Services (DHSS) such amounts as may be available to effectuate the purposes of the bill, which the commissioner is to allocate to the institute in accordance with the plan developed pursuant to the bill.

· The institute, in consultation with the Commissioners of Health and Senior Services and Human Services, is

-- directed to apply for any grants from federal government agencies and nonprofit foundations, and to seek to obtain any donations from corporations or other entities, as may be available to provide monies in furtherance of the purposes of the bill; and

-- is authorized to accept any grant, devise, bequest, donation, gift, services in kind, assignment of money, bonds of other valuable securities, or monies appropriated for the purposes of the bill or otherwise received, in furtherance of its purposes.

· The bill appropriates $6 million from the General Fund to DHSS to effectuate its purposes, from which amount the commissioner is to allocate funds to each of the three regional centers of the institute in accordance with the plan developed pursuant to the bill.

· The bill takes effect on the 120th day following enactment, but authorizes the Commissioner of Health and Senior Services to take anticipatory administrative action in advance as necessary for its implementation.