H 4496 General Bill, By D.A. Wright, R.A. Barber, J.M. Baxley, R.S. Corning, 
K.G. Kempe, S.G. Manly, Sharpe, D.C. Waldrop, C.C. Wells and J.B. Wilder
 A Bill to amend the Code of Laws of South Carolina, 1976, by adding Chapter
 38, Title 44, so as to enact the South Carolina Head and Spinal Cord Injury
 Information System Act establishing the South Carolina Head and Spinal Cord
 Injury Information System which creates a central information surveillance and
 registry system, by establishing a Council to the System, to provide for the
 members of the Council and to provide for their powers and duties, to require
 reporting of certain patient information related to head and spinal cord
 injuries, to provide for confidentiality and procedures for obtaining release
 of information and consent, to provide penalties, to provide for an
 implementation date, to provide for the temporary placement and staffing of
 the System at the Interagency Office of Disability Prevention within the State
 Department of Mental Retardation, and to provide that funding for the first
 two years must be provided by a grant from the Center for Disease Control
 received by the Interagency Office of Disability Prevention.

   03/04/92  House  Introduced and read first time HJ-19
   03/04/92  House  Referred to Committee on Medical, Military,
                     Public and Municipal Affairs HJ-20
   04/16/92  House  Committee report: Favorable with amendment
                     Medical, Military, Public and Municipal Affairs HJ-6
   05/06/92  House  Debate adjourned until Thursday, May 14, 1992 HJ-32
   05/14/92  House  Debate adjourned until Tuesday, May 19, 1992 HJ-302
   05/19/92  House  Debate adjourned until Thursday, May 21, 1992 HJ-52
   05/21/92  House  Debate adjourned until Tuesday, May 26, 1992 HJ-40
   05/21/92  House  Reconsidered HJ-46
   05/21/92  House  Tabled HJ-46

April 16, 1992

H. 4496

Introduced by REPS. Wright, Wilder, Baxley, Manly, Kempe, Corning, Sharpe, Waldrop, Wells and Barber

S. Printed 4/16/92--H.

Read the first time March 4, 1992.

To whom was referred a Bill (H. 4496), to amend the Code of Laws of South Carolina, 1976, by adding Chapter 38, Title 44 so as to enact the South Carolina Head and Spinal Cord Injury Information System Act, etc., respectfully

That they have duly and carefully considered the same, and recommend that the same do pass with amendment:

Amend the bill, as and if amended, by striking all after the enacting words and inserting:

/SECTION 1. Title 44 of the 1976 Code is amended by adding:

Section 44-38-10. There is created the South Carolina Head and Spinal Cord Injury Information System to provide a central information surveillance system and registry for head and spinal cord injuries.

Section 44-38-20. As used in this chapter:

(1) `Council' means the South Carolina Head and Spinal Cord Injury Information System Council established pursuant to this chapter.

(2) `Head injury' means an insult to the skull or brain, not of a degenerative or congenital nature, but one caused by an external physical force that may produce a diminished or altered state of consciousness which results in impairment of cognitive abilities or physical functioning and possibly in behavioral or emotional functioning. It does not include cerebral vascular accidents and aneurysms.

(3) `Spinal cord injury' means an acute, traumatic lesion of neural elements in the spinal canal resulting in any degree of sensory deficit, motor deficit, or major life functions. The deficit or dysfunction may be temporary or permanent.

(4) `System' means the South Carolina Head and Spinal Cord Injury Information System established pursuant to this chapter.

Section 44-38-30. (A) There is the South Carolina Head and Spinal Cord Injury Information System Council established for the purpose of overseeing the daily activities of the system. The council is composed of the following ex officio members or their designees: the chairman, Developmental Disabilities Council, Office of the Governor, the chairman of the Joint Committee to Study the Problems of Persons with Disabilities, the State Commissioner of the State Department of Mental Health, the Commissioner of the State Agency of the Department of Vocational Rehabilitation, the Commissioner of the State Department of Mental Retardation, the Commissioner of the South Carolina Department of Health and Environmental Control, the Executive Director of the South Carolina Health and Human Services Finance Commission, the Dean of the University of South Carolina School of Medicine, the Dean of the Medical University of South Carolina, the Executive Director of the South Carolina Hospital Association, one representative from each of the head injury advocacy organizations, and one individual with a spinal cord injury. The council shall elect a chairman who may appoint such other nonvoting members who may serve in an advisory capacity to the council, including representatives from the private service delivery sector.

(B) Members of the council shall receive no compensation, including subsistence, per diem, or mileage for service on the council.

Section 44-38-40. In carrying out the purposes of this chapter the council shall:

(1) determine and implement the most cost effective method:

(a) to collect, record, analyze, and disseminate data on the incidence and causes of head and spinal cord injuries;

(b) to gather such other data as needed from existing sources of the South Carolina Statewide Hospital Data System and the Trauma Registry of the Division of Emergency medical Services;

(2) provide information for initiation of case management services and preventive programs for head and spinal cord injured persons in this State;

(3) develop and promote primary prevention programs related to preventing head and spinal cord injuries;

(4) perform other duties and functions as determined by the council to be necessary for implementation of this chapter.

Section 44-38-50. The council shall develop:

(1) reporting forms and procedures for reporting the information required by this chapter;

(2) a system to provide follow up to individuals entered in the registry; and

(3) procedures for gathering information from other states in which a South Carolina resident may be admitted for a head or spinal cord injury, or both;

(4) procedures for approving research projects or participation in research activities.

Section 44-38-60. (A) All reports and records made pursuant to this chapter and maintained by the system, any agency, hospital, institution, other facility, or person pursuant to this chapter are confidential and may not be disclosed under the Freedom of Information Act. Information must not be released except to:

(1) appropriate staff of the system;

(2) submitting hospitals or their designees;

(3) a person engaged in a research project approved pursuant to Section 44-38-50 except that no information identifying a subject of a report or a reporter may be made available to a researcher unless consent is obtained pursuant to this section;

(4) a member of the council, except that no information identifying a subject of a report or a reporter may be made to the council unless consent is obtained pursuant to this section.

(B) The identity of a patient, physician, or hospital is confidential and may not be released, except that the identity of a patient may be released upon informed written consent of the patient, or the patient's legal guardian or legal representative; the identity of a physician may be released upon written consent of the physician; and the identity of a hospital may be released upon written consent of the hospital.

Section 44-38-70. The council shall submit an annual report to the Joint Committee to Study Problems of Persons with Disabilities including, but not limited to, the incidence and status of head and spinal cord injuries in South Carolina, the administration of the system and recommendations for modifications in the system and for improving the delivery of services to persons with these injuries.

Section 44-38-80. No person, medical facility, or other organization providing information or releasing in accordance with this chapter may be held liable in a civil or criminal action for divulging confidential information unless the individual or organization acted in bad faith or with malicious purpose.

Section 44-38-90. A person subject to this chapter who intentionally fails to comply with reporting or confidentiality and disclosure requirements of this chapter is subject to a civil penalty of not more than one hundred dollars for the first violation time a person fails to comply and not more than five thousand dollars for a subsequent violation."

SECTION 2. The South Carolina Head and Spinal Cord Injury Information System as established in Section 1 of this act must be fully operational by July 1, 1993.

SECTION 3. The South Carolina Head and Spinal Cord Injury Information System as established by Section 1 of this act is initially and temporarily placed within and staffed and administered by the Interagency Office of Disability Prevention currently located within the State Department of Mental Retardation. The South Carolina Head and Spinal Cord Injury Information System Council, with the assistance of the Interagency Office of Disability Prevention, shall evaluate and recommend to the Joint Committee to Study the Problems of Persons with Disabilities by July 1, 1993, the most appropriate permanent placement for the South Carolina Head and Spinal Cord Injury Information System.

SECTION 4. Funding for the first two years of the South Carolina Head and Spinal Cord Injury Information System must be provided by funds available to the Interagency Office of Disability Prevention through a Center for Disease Control grant.

SECTION 5. This act takes effect upon approval by the Governor./

Amend title to conform.

DAVE C. WALDROP, JR., for Committee.

1. Estimated Cost to State-First Year $-0-

2. Estimated Cost to State-Annually

Thereafter $Indeterminate

H. 4496 amends the 1976 Code of Laws of South Carolina by adding Chapter 38 to Title 44. The bill establishes the South Carolina Head and Spinal Cord Injury Information System, a central information and surveillance system. H. 4496 also establishes a council to develop rules and procedures for establishment of the System and to oversee its daily activities. Council members will not be reimbursed for their services. Initially and temporarily, the System will be located in and administered by the Interagency Office of Disability Development in the Department of Mental Retardation. By July 1, 1993, the System Council will make recommendations to the Joint Committee to Study the Problems of Persons with Disabilities as to the permanent location and placement of the Information System. H. 4496 also specifies that funding for the first two years of the Information System must come from federal grant funds available to the Department of Mental Retardation.

Under the provisions just specified, enactment of H. 4496, as written, will have no fiscal impact on the General Fund during the first two years of its establishment and operation. Subsequently, the impact on the General Fund is indeterminate since it will depend on the scope and status of the Information System's activities as well as the continued availability of federal grant funds.

Prepared By: Approved By:

Aaron Krute George N. Dorn, Jr.

State Budget Analyst State Budget Division

A BILL

TO AMEND THE CODE OF LAWS OF SOUTH CAROLINA, 1976, BY ADDING CHAPTER 38, TITLE 44 SO AS TO ENACT THE SOUTH CAROLINA HEAD AND SPINAL CORD INJURY INFORMATION SYSTEM ACT ESTABLISHING THE SOUTH CAROLINA HEAD AND SPINAL CORD INJURY INFORMATION SYSTEM WHICH CREATES A CENTRAL INFORMATION SURVEILLANCE AND REGISTRY SYSTEM, BY ESTABLISHING A COUNCIL TO THE SYSTEM, TO PROVIDE FOR THE MEMBERS OF THE COUNCIL AND TO PROVIDE FOR THEIR POWERS AND DUTIES, TO REQUIRE REPORTING OF CERTAIN PATIENT INFORMATION RELATED TO HEAD AND SPINAL CORD INJURIES, TO PROVIDE FOR CONFIDENTIALITY AND PROCEDURES FOR OBTAINING RELEASE OF INFORMATION AND CONSENT, TO PROVIDE PENALTIES; TO PROVIDE FOR AN IMPLEMENTATION DATE, TO PROVIDE FOR THE TEMPORARY PLACEMENT AND STAFFING OF THE SYSTEM AT THE INTERAGENCY OFFICE OF DISABILITY PREVENTION WITHIN THE STATE DEPARTMENT OF MENTAL RETARDATION, AND TO PROVIDE THAT FUNDING FOR THE FIRST TWO YEARS MUST BE PROVIDED BY A GRANT FROM THE CENTER FOR DISEASE CONTROL RECEIVED BY THE INTERAGENCY OFFICE OF DISABILITY PREVENTION.

Whereas, the prevention of head and spinal cord injuries and the rehabilitation of survivors of head and spinal cord injuries is an investment which benefits all of society; and

Whereas, identifying survivors of these injuries is critical in developing systems to provide service delivery; and

Whereas, a mechanism to identify these individuals is needed; and

Whereas, a state registry would provide a proper and meaningful method of identification of head and spinal cord injured individuals. Now, therefore,

Be it enacted by the General Assembly of the State of South Carolina:

SECTION 1. Title 44 of the 1976 Code is amended by adding:

Section 44-38-10. There is created the South Carolina Head and Spinal Cord Injury Information System to provide a central information surveillance system and registry for head and spinal cord injuries.

Section 44-38-20. As used in this chapter:

(1) `Council' means the South Carolina Head and Spinal Cord Injury Information System Council established pursuant to this chapter.

(2) `Head injury' means an insult to the skull or brain, not of a degenerative or congenital nature, but one caused by an external physical force that may produce a diminished or altered state of consciousness which results in impairment of cognitive abilities or physical functioning and possibly in behavioral or emotional functioning. It does not include cerebral vascular accidents and aneurysms.

(3) `Spinal cord injury' means an acute, traumatic lesion of neural elements in the spinal canal resulting in any degree of sensory deficit, motor deficit, or major life functions. The deficit or dysfunction may be temporary or permanent.

(4) `System' means the South Carolina Head and Spinal Cord Injury Information System established pursuant to this chapter.

Section 44-38-30. (A) There is the South Carolina Head and Spinal Cord Injury Information System Council established for the purpose of overseeing the daily activities of the system. The council is composed of the following ex officio members or their designees: the chairman, Developmental Disabilities Council, Office of the Governor, the chairman of the Joint Committee to Study the Problems of Persons with Disabilities, the Commissioner of the State Agency of the Department of Vocational Rehabilitation, the Commissioner of the State Department of Mental Retardation, the Commissioner of the South Carolina Department of Health and Environmental Control, the Executive Director of the South Carolina Health and Human Services Finance Commission, Dean of the University of South Carolina School of Medicine, the Dean of the Medical University of South Carolina, and the Executive Director of the South Carolina Hospital Association. The council shall elect a chairman who may appoint such other nonvoting members who may serve in an advisory capacity to the council, including representatives from the private service delivery sector.

(B) Members of the council shall receive no compensation, including subsistence, per diem, or mileage for service on the council.

Section 44-38-40. In carrying out the purposes of this chapter the council shall:

(1) determine and implement the most cost effective method:

(a) to collect, record, analyze, and disseminate data on the incidence and causes of head and spinal cord injuries;

(b) to gather such other data as needed from other sources on head and spinal cord injuries;

(2) provide information for initiation of case management services and preventive programs for head and spinal cord injured persons in this State;

(3) develop and promote primary prevention programs related to preventing head and spinal cord injuries;

(4) perform other duties and functions as determined by the council to be necessary for implementation of this chapter.

Section 44-38-50. (A) An admitting hospital must submit to the system:

(1) an initial report on an individual who has received a head or spinal cord injury, or both, within five days of an individual's admission as a result of the injury;

(2) a discharge report within thirty days of discharge on those patients whose injuries required inpatient admissions to the hospital due to the severity of their injuries.

(B) The initial report must include, but is not limited to: name; date of birth; gender; race; residence of injured person, including county; date of injury; social security number; next of kin; the hospital name and identification number; cause of injury; and initial diagnosis.

(C) The discharge report must include the information contained in the initial report and the length of the hospital stay; medical expenses billed; medical expenses payment method; and other information as may be requested and required by the council. The form may include a patient registry identification number assigned by the system for purposes of confidentiality.

(D) The information submitted pursuant to subsections (B) and (C) must be entered in the registry and, excluding the name of the individual, may be used in the surveillance, study, research, and prevention of head and spinal cord injuries. No information submitted pursuant to subsection (B) or (C) may be released to any person, organization or agency, public or private, without the written informed consent of the injured individual or that person's legal guardian or legal representative.

(E) Failure to submit this information or to release this information in accordance with this chapter is subject to penalties pursuant to Section 44-38-90.

Section 44-38-60. The council shall develop:

(1) reporting forms and procedures for reporting the information required by this chapter;

(2) a system to provide follow up to individuals entered in the registry; and

(3) procedures for gathering information from other states in which a South Carolina resident may be admitted for a head or spinal cord injury, or both;

(4) procedures for approving research projects or participation in research activities.

Section 44-38-70. (A) All reports and records made pursuant to this chapter and maintained by any agency, hospital, institution, other facility, or person pursuant to this chapter are confidential. Information must not be released except to:

(1) appropriate staff of the system;

(2) a person engaged in a research project approved pursuant to Section 44-38-60 except that no information identifying a subject of a report or a reporter may be made available to a researcher unless consent is obtained pursuant to this section;

(3) a member of the council, except that no information identifying a subject of a report or a reporter may be made to the council unless consent is obtained pursuant to this section.

(B) The identity of a patient, physician, or hospital is confidential and may not be released, except that the identity of a patient may be released upon informed written consent of the patient, or the patient's legal guardian or legal representative; the identity of a physician may be released upon written consent of the physician; and the identity of a hospital may be released upon written consent of the hospital.

Section 44-38-80. The council shall submit an annual report to the Joint Committee to Study Problems of Persons with Disabilities including, but not limited to, the incidence and status of head and spinal cord injuries in South Carolina, the administration of the system and recommendations for modifications in the system and for improving the delivery of services to persons with these injuries.

Section 44-38-90. No individual or organization providing information or releasing in accordance with this chapter may be held liable in a civil or criminal action for divulging confidential information unless the individual or organization acted in bad faith or with malicious purpose.

Section 44-38-100. A person subject to this chapter who intentionally fails to comply with reporting or confidentiality and disclosure requirements of this chapter is subject to a civil penalty of not more than one hundred dollars for the first violation time a person fails to comply and not more than five thousand dollars for a subsequent violation."

SECTION 2. The South Carolina Head and Spinal Cord Injury Information System as established in Section 1 of this act must be fully operational by July 1, 1993.

SECTION 3. The South Carolina Head and Spinal Cord Injury Information System as established by Section 1 of this act is initially and temporarily placed within and staffed and administered by the Interagency Office of Disability Prevention currently located within the State Department of Mental Retardation. The South Carolina Head and Spinal Cord Injury Information System Council, with the assistance of the Interagency Office of Disability Prevention, shall evaluate and recommend to the Joint Committee to Study the Problems of Persons with Disabilities by July 1, 1993, the most appropriate permanent placement for the South Carolina Head and Spinal Cord Injury Information System.

SECTION 4. Funding for the first two years of the South Carolina Head and Spinal Cord Injury Information System must be provided by funds available to the Interagency Office of Disability Prevention through a Center for Disease Control grant.

SECTION 5. This act takes effect upon approval by the Governor.