Section 120. Protection, use and release of personal information

A. A DSU may carry out the functions and responsibilities described in this section, except as otherwise provided, or may delegate them to the appropriate service provider with which the DSU subgrants or contracts to provide IL services. The service provider shall adopt and implement policies and procedures to safeguard the confidentiality of all personal information, including photographs and lists of names. These policies and procedures must ensure that:

1. Specific safeguards protect current and stored personal information;

2. All applicants for, or recipients of, IL services and, as appropriate, those individuals' legally authorized representatives, service providers, cooperating agencies, and interested persons are informed of the confidentiality of personal information and the conditions for gaining access to and releasing this information;

3. All applicants or their legally authorized representatives are informed about the service provider's need to collect personal information and the policies governing its use, including:

a. Identification of the authority under which information is collected;

b. Explanation of the principal purposes for which the service provider intends to use or release the information;

c. Explanation of whether providing requested information to the service provider is mandatory or voluntary and the effects to the individual of not providing requested information;

d. Identification of those situations in which the service provider requires or does not require informed written consent of the individual or his legally authorized representative before information may be released; and

e. Identification of other agencies to which information is routinely released;

4. Persons who are unable to communicate in English or who rely on alternative modes of communication must be provided an explanation of service provider policies and procedures affecting personal information through methods that can be adequately understood by them;

5. At least the same protections are provided to individuals with significant disabilities as provided by the state laws and regulations; and

6. Access to records is governed by rules established by the service provider and any fees charged for copies of records are reasonable and cover only extraordinary costs of duplication or making extensive searches.

B. All personal information in the possession of the service provider may be used only for the purposes directly connected with the provision of IL services and the administration of the IL program under which IL services are provided.

1. Information containing identifiable personal information may not be shared with advisory or other bodies that do not have official responsibility for the provision of IL services or the administration of the IL program under which IL services are provided.

2. In the provision of IL services or the administration of the IL program under which IL services are provided, the service provider may obtain personal information from other service providers and cooperating agencies under assurances that the information may not be further divulged, except as provided under subsections C, D, and E of this section.

C. Except as provided in subdivisions 1 and 2 of this subsection, if requested in writing by a recipient of IL services, the service provider shall release all information in that individual's record of services to the individual or the individual's legally authorized representative in a timely manner.

1. Medical, psychological, or other information that the service provider determines may be harmful to the individual may not be released directly to the individual, but must be provided through a qualified medical or psychological professional or the individual's legally authorized representative.

2. If personal information has been obtained from another agency or organization, it may be released only by, or under the conditions established by, the other agency or organization.

D. Personal information may be released to an organization, agency, or individual engaged in audit, evaluation, or research activities only for purposes directly connected with the administration of an IL program, or for purposes that would significantly improve the quality of life for individuals with significant disabilities and only if the organization, agency, or individual ensures that:

1. The information will be used only for the purposes for which it is being provided;

2. The information will be released only to persons officially connected with the audit, evaluation, or research;

3. The information will not be released to the involved individual;

4. The information will be managed in a manner to safeguard confidentiality; and

5. The final product will not reveal any personally identifying information without the informed written consent of the involved individual or the individual's legally authorized representative.

Human research to be conducted or authorized by a center for independent living may be subject to approval and continuing review from a review board established under state-mandated regulations to protect human research participants.

E. Upon receiving the informed written consent of the individual or, if appropriate, the individual's legally authorized representative, the service provider may release personal information to another agency or organization for the latter's program purposes only to the extent that the information may be released to the involved individual and only to the extent that the other agency or organization demonstrates that the information requested is necessary for the proper administration of its program.

1. Medical or psychological information may be released if the other agency or organization assures the service provider that the information will be used only for the purpose for which it is being provided and will not be further released to the individual.

2. The service provider shall release personal information if required by federal laws or regulations.

3. The service provider shall release personal information in response to investigations in connection with law enforcement, fraud, or abuse, unless expressly prohibited by federal or state laws or regulations, and in response to judicial order.

4. The service provider also may release personal information to protect the individual or others if the individual poses a threat to his safety or to the safety of others.

Historical Notes

Derived from VR595-02-1 § 12, eff. November 1, 1987; amended, Volume 20, Issue 09, eff. February 11, 2004.

Statutory Authority

§ 51.5-14 of the Code of Virginia.