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SPONSOR: Rep. K. Williams & Sen. Sturgeon
Reps. Harris, K. Johnson; Sens. Hansen, Huxtable,
Pinkney
HOUSE OF REPRESENTATIVES
153rd GENERAL ASSEMBLY
HOUSE BILL NO. 424
AN ACT TO AMEND TITLE 16 RELATING TO AUTISM SURVEILLANCE AND REGISTRATION.
BE IT ENACTED BY THE GENERAL ASSEMBLY OF THE STATE OF DELAWARE:
1 Section 1. Amend Subchapter III, Chapter 2, Title 16 of the Delaware Code by making deletions as shown by
2 strike through and insertions as shown by underline as follows:
3 Subchapter III. Autism Surveillance and Registration [Repealed]
4 § 221. Purpose. [Repealed]
5 The intent of the General Assembly is to establish and maintain an autism surveillance system and registry for the
6 State.
7 Responsibility for establishing and maintaining the system and registry is delegated to the Department of Health
8 and Social Services, along with the authority to exercise certain powers to implement the system and registry. To ensure an
9 accurate and continuing source of data concerning autism, the General Assembly by this subchapter requires certain health-
10 care practitioners and all hospitals and clinical laboratories to make available to the Department of Health and Social
11 services information contained in the medical records of patients who have a suspected or confirmed autism diagnosis. All
12 confirmed autism shall be classified and coded using the medically recognized system of International Classification of
13 Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), as well as the 6-digit modified British Pediatric Association
14 system (BPA/ICD-9), and all subsequent revisions to these publications which are used by the Centers for Disease Control
15 and Prevention. It is intended that the product of these efforts will be a central data bank of accurate, precise and current
16 information regarding all autism diagnosed or treated, or both, in this State.
17 § 222. Definitions. [Repealed]
18 The following words, terms and phrases, when used in this subchapter, shall have the meanings ascribed to them in
19 this section, except where the content clearly indicates a different meaning:
20 (1) “Autism” means any structural or biochemical abnormality, regardless of cause, diagnosed at any time
21 before or after birth, that requires medical or surgical intervention or that interferes with normal growth or
22 development.
23 (2) “Department” means the Department of Health and Social Services.
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24 (3) “Registry” means a central data bank containing collected, classified, coded and stored data relating to
25 autism in children.
26 (4) “Surveillance” means the process of identifying and investigating autism in children.
27 § 223. Autism Surveillance and Registry Program. [Repealed].
28 (a) The Department may adopt, promulgate, amend and repeal any rules and regulations necessary to accomplish
29 the purpose of this subchapter. These rules and regulations may include provisions for:
30 (1) The establishment and maintenance of an up-to-date registry that shall document every diagnosis or
31 treatment, or both, of autism in any child in this State;
32 (2) a. The establishment of a procedure for reporting to the Department, within 30 days of initial diagnosis of
33 every occurrence of autism in any child in this State. The procedure shall include the reporting of specified
34 information, through a combined system of active and passive surveillance, on every child under 18 years of age with
35 autism. Specified information shall be deemed necessary and appropriate to accomplish the purpose of this subchapter
36 and in accordance with the recommendations from the Centers for Disease Control and Prevention, for the following
37 reasons:
38 1. To identify risk factors for autism;
39 2. To investigate the causes and prevalence of autism;
40 3. To develop preventive strategies to decrease occurrences of autism;
41 4. To analyze incidences, prevalence and trends of autism through epidemiological studies; or
42 5. To investigate the morbidity and mortality rates resulting from autism;
43 b. Those required to report to the Department occurrences of autism shall include:
44 1. Any physician, surgeon, dentist, podiatrist or other health care practitioner who diagnoses a child
45 with autism;
46 2. The designated representative of any hospital, dispensary or other similar public or private
47 institution that diagnoses or provides treatment, or both, for children with autism;
48 (3) The establishment of a procedure for the publication and distribution of forms, instructions and notices
49 required by this subchapter or necessary to accomplish the purpose of this subchapter; and
50 (4) The establishment of a procedure to obtain follow-up information from those required to report
51 occurrences of autism pursuant to this subchapter. Any follow-up information, including family, physician, hospital or
52 laboratory contact deemed necessary by the Department, shall be submitted to the Department at least 1 time each year
53 by those required to report occurrences of autism.
54 (b) The provisions of this subchapter and any rules or regulations issued pursuant to this subchapter shall not apply
55 to any person or private institution that, as an exercise of religious freedom, treats the sick or suffering by spiritual means
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57 (c) A parent, custodian or guardian of an infant having any autism may refuse disclosure to the surveillance system
58 and registry of the infant’s name and identifying information on the grounds that such autism identification is contrary to
59 the religious tenets and practices of the infant’s parent, custodian or guardian.
60 § 224. Confidentiality of reports. [Repealed]
61 (a) Any report of the diagnosis of autism made pursuant to this subchapter shall not be divulged nor made public
62 in any way that might tend to disclose the identity of the person or family of the person to whom it relates. However,
63 patient-identifying information may be exchanged among authorized agencies as approved by the Department and upon
64 receipt by the Department of satisfactory assurances by those agencies of the preservation of the confidentiality of such
65 information.
66 (b) No individual or organization providing information to the Department in accordance with this subchapter shall
67 be deemed to be liable for or held liable for divulging confidential information.
68 § 225. Compulsion prohibited. [Repealed]
69 Nothing in this subchapter shall be construed to compel any person to submit to any medical or public health
70 examination, treatment or supervision.
71 § 226. Violations. [Repealed]
72 Any person or entity who is required to report the diagnosis or treatment, or both, of autism in any child and who
73 violates any provision of this subchapter shall be fined up to $100 for each violation. Justices of the Peace Courts shall have
74 jurisdiction of any offense under this subchapter.
75 Section 2. By [6 months from the date of enactment of this Act], the Department of Health and Social Services
76 (Department) shall expunge all protected health information pertaining to individuals collected under Subchapter III,
77 Chapter 2 of Title 16. Protected health information must be expunged in accordance with Subchapter II, Chapter 12 of Title
78 16. The Department may retain aggregate data.
SYNOPSIS
In 2004, the 142nd General Assembly passed House Bill No. 500 as amended by House Amendment No. 1,
creating an Autism registration and surveillance program. Physicians, surgeons, dentists, podiatrists, or other healthcare
practitioners are required to report occurrences using the established procedure or incur a fee of $100 for each violation of
failure to report.
The Department of Health & Social Services (DHSS) has received questions from providers about Delaware’s
required Autism Surveillance and Registration Program and concerns about privacy, ethics, and the absence of parental
consent to store this information. The Autism Surveillance and Registration Program was implemented in a passive
approach, and the data collected is not used for analysis or review. The Division of Public Health’s current strategy around
Autism is to promote awareness and encourage appropriate screenings.
This Act repeals the Autism Surveillance and Registration Program and requires that protected health information
collected at an individual level to be expunged under statutory confidentiality requirements.
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