TITLE 16

Health and Safety

Local Boards of Health; Health Programs

CHAPTER 2. CONGENITAL DISABILITIES PROGRAM AND EARLY INTERVENTION SERVICES

Subchapter I. Congenital Disabilities Surveillance, Registration and Treatment Program


The intent of the General Assembly is to provide financial assistance for the treatment of children with congenital disabilities and to require the establishment and maintenance of a congenital disabilities surveillance system and registry for the State.

(1) Surveillance system and registry. — Responsibility for establishing and maintaining the system and registry is delegated to the Department of Health and Social Services, along with the authority to exercise certain powers to implement the system and registry. To ensure an accurate and continuing source of data concerning congenital disabilities, the General Assembly by this subchapter requires certain health care practitioners and all hospitals and clinical laboratories to make available to the Department of Health and Social Services information contained in the medical records of patients who have a suspected or confirmed congenital disability diagnosis. All confirmed congenital disabilities shall be classified and coded using the medically recognized system of International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), as well as the 6-digit modified British Pediatric Association system (BPA/ICD-9), and all subsequent revisions to these publications which are used by the Centers for Disease Control and Prevention. It is intended that the product of these efforts will be a central data bank of accurate, precise and current information regarding all congenital disabilities diagnosed or treated, or both, in this State.

(2) Treatment. — The cost of treating children for congenital disabilities can be prohibitive and impose a substantial burden upon the children's families beyond the resources of those families and beyond the resources of state, federal or private agencies. The treatment of such children is in the best interest and welfare of the people and the State. It is the intent of this subchapter to provide assistance with the cost of treatment for children so afflicted.

Treatment paid for under this Program shall be provided, insofar as possible, within the State. The Secretary of the Department of Health and Social Services shall establish rules and regulations for the eligibility of persons requesting services under this subchapter, including the ability of those persons to pay for services, and for the disbursement of funds appropriated for this Program. However, this subchapter will in no way affect the rights, liabilities or duties of the Secretary of the Department of Health and Social Services or of persons or guardians of persons requesting services under this subchapter from operation of laws or prior existing laws and, in particular, § 7940 of Title 29.

60 Del. Laws, c. 63, § 1; 71 Del. Laws, c. 86, § 1; 71 Del. Laws, c. 286, § 3; 78 Del. Laws, c. 179, § 157.;

The following words, terms and phrases, when used in this subchapter, shall have the meanings ascribed to them in this section, except where the content clearly indicates a different meaning.

(1) "Department" means the Department of Health and Social Services.

(2) "Congenital disability" means any structural or biochemical abnormality, regardless of cause, diagnosed at any time before or after birth, that requires medical or surgical intervention or that interferes with normal growth or development.

(3) "Surveillance" means the process of identifying and investigating congenital disabilities in children under age 5.

(4) "Registry" means a central data bank containing collected, classified, coded and stored data relating to congenital disabilities in children under age 5.

71 Del. Laws, c. 86, § 1; 71 Del. Laws, c. 286, § 3; 78 Del. Laws, c. 179, § 158.;

(a) The Department may adopt, promulgate, amend and repeal any rules and regulations necessary to accomplish the purpose of this subchapter. These rules and regulations may include provisions for:

(1) The establishment and maintenance of an up-to-date registry that shall document every diagnosis or treatment, or both, of any congenital disability in any child under age 5 in this State;

(2)a. The establishment of a procedure for reporting to the Department, within 30 days of initial diagnosis or treatment, every occurrence of a congenital disability in any child under age 5 in this State. The procedure shall include the reporting of specified information, through a combined system of active and passive surveillance, on every child under age 5 with 1 or more congenital disabilities. Specified information shall be deemed necessary and appropriate to accomplish the purpose of this subchapter and in accordance with the recommendations from the Centers for Disease Control and Prevention, for the following reasons:

1. To identify risk factors for congenital disabilities;

2. To investigate the causes and prevalence of congenital disabilities;

3. To develop preventive strategies to decrease occurrences of congenital disabilities;

4. To analyze incidences, prevalence and trends of congenital disabilities through epidemiological studies; or

5. To investigate the morbidity and mortality rates resulting from congenital disabilities;

b. Those required to report to the Department occurrences of congenital disabilities shall include:

1. Any physician, surgeon, dentist, podiatrist or other health care practitioner who diagnoses or provides treatment, or both, for children under age 5 with congenital disabilities;

2. The designated representative of any hospital, dispensary or other similar public or private institution that diagnoses or provides treatment, or both, for children under age 5 with congenital disabilities; and

3. The designated representative of any clinical laboratory that performs any test which identifies children under age 5 with congenital disabilities;

(3) The establishment of a procedure for the publication and distribution of forms, instructions and notices required by this subchapter or necessary to accomplish the purpose of this subchapter; and

(4) The establishment of a procedure to obtain follow-up information from those required to report occurrences of congenital disabilities pursuant to this subchapter. Any follow-up information, including family, physician, hospital or laboratory contact deemed necessary by the Department, shall be submitted to the Department at least 1 time each year by those required to report occurrences of congenital disabilities.

(b) The provisions of this subchapter and any rules or regulations issued pursuant to this subchapter shall not apply to any person or private institution that, as an exercise of religious freedom, treats the sick or suffering by spiritual means through prayer alone.

(c) A parent, custodian or guardian of an infant having any congenital disability may refuse disclosure to the surveillance system and registry of the infant's name and identifying information on the grounds that such congenital disability identification is contrary to the religious tenets and practices of the infant's parent, custodian or guardian.

71 Del. Laws, c. 86, § 1; 71 Del. Laws, c. 286, § 3; 78 Del. Laws, c. 179, §§ 159, 160.;

(a) Any report of the diagnosis or treatment, or both, of a congenital disability made pursuant to this subchapter shall not be divulged nor made public in any way that might tend to disclose the identity of the person or family of the person to whom it relates. However, patient-identifying information may be exchanged among authorized agencies as approved by the Department and upon receipt by the Department of satisfactory assurances by those agencies of the preservation of the confidentiality of such information.

(b) No individual or organization providing information to the Department in accordance with this subchapter shall be deemed to be liable for or held liable for divulging confidential information.

71 Del. Laws, c. 86, § 1; 71 Del. Laws, c. 286, § 3; 78 Del. Laws, c. 179, § 161.;

Nothing in this subchapter shall be construed to compel any person to submit to any medical or public health examination, treatment or supervision.

71 Del. Laws, c. 86, § 1; 71 Del. Laws, c. 286, § 3.;

Any person or entity who is required to report the diagnosis or treatment, or both, of any congenital disability in any child under age 5 and who violates any provision of this subchapter shall be fined up to $100 for each violation. Justices of the Peace Courts shall have jurisdiction of any offense under this subchapter.

71 Del. Laws, c. 86, § 1; 71 Del. Laws, c. 286, § 3; 78 Del. Laws, c. 179, § 162.;