HB5370ham001 93RD GENERAL ASSEMBLY

Rep. Kathleen A. Ryg

Filed: 3/31/2004

09300HB5370ham001 LRB093 17046 RXD 48315 a

AMENDMENT TO HOUSE BILL 5370

AMENDMENT NO. ______. Amend House Bill 5370 by replacing everything after the enacting clause with the following:

"Section 5. The State Finance Act is amended by changing Sections 6z-50 as follows:

(30 ILCS 105/6z-50)

Sec. 6z-50. Brain Injury and Spinal Cord Injury Trust Fund. The Brain Injury and Spinal Cord Injury Trust Fund is created as a special fund in the State treasury. Subject to appropriations, the Department of Human Services shall use moneys in the Fund to fund community-based rehabilitation services programs in accordance with priorities and criteria established by the Brain and Advisory Council on Spinal Cord Injury Advisory Council and Head Injuries.

(Source: P.A. 91-737, eff. 6-2-00.)

Section 10. The Head and Spinal Cord Injury Act is amended by changing Sections 0.01, 1, 2, 3, and 6 as follows:

(410 ILCS 515/0.01) (from Ch. 111 1/2, par. 7850)

Sec. 0.01. Short title. This Act may be cited as the Brain Head and Spinal Cord Injury Act.

(Source: P.A. 86-1324.)

(410 ILCS 515/1) (from Ch. 111 1/2, par. 7851)

Sec. 1. As used in this Act, unless the context clearly indicates otherwise:

(a) "Department" means the Department of Public Health.

(b) "Brain Head injury" means a sudden insult or damage to the brain or its coverings, not of a degenerative nature, which produces an altered state of consciousness or temporarily or permanently impairs mental, cognitive, behavioral or physical functioning. This includes cerebral vascular accidents and , aneurisms. and Congenital deficits are excluded from this definition.

(c) "Spinal cord injury" means an injury that occurs as a result of trauma, which involves spinal vertebral fracture, or where the injured person suffers any of the following effects:

(1) effects on the sensory system including numbness, tingling or loss of sensation in the body or in one or more extremities;

(2) effects on the motor system including weakness or paralysis in one or more extremities;

(3) effects on the visceral system including bowel or bladder dysfunction or hypotension.

(d) "Council" means the Brain and Advisory Council on Spinal Cord Injury Advisory Council and Head Injuries.

(Source: P.A. 86-510.)

(410 ILCS 515/2) (from Ch. 111 1/2, par. 7852)

Sec. 2. Information; reports.

(a) The Department shall establish and maintain an information registry and reporting system for the purpose of data collection and needs assessment of persons with brain head and spinal cord injuries injured persons in this State.

(b) Reports of brain head and spinal cord injuries shall be filed with the Department by a hospital administrator or his designee on a quarterly basis.

(c) Reporting forms and the manner in which the information is to be reported shall be provided by the Department. Such reports shall include, but shall not be limited to, the following information: name, age, and residence of the injured person, the date and cause of the injury, the initial diagnosis and such other information as may be required by the Department.

(Source: P.A. 86-510; 87-691.)

(410 ILCS 515/3) (from Ch. 111 1/2, par. 7853)

Sec. 3. (a) All reports and records made pursuant to this Act and maintained by the Department and other appropriate persons, officials and institutions pursuant to this Act shall be confidential. Information shall not be made available to any individual or institution except to:

(1) appropriate staff of the Department;

(2) any person engaged in a bona fide research project, with the permission of the Director of Public Health, except that no information identifying the subjects of the reports or the reporters shall be made available to researchers unless the Department requests and receives consent for such release pursuant to the provisions of this Section; and

(3) the Council, except that no information identifying the subjects of the reports or the reporters shall be made available to the Council unless consent for release is requested and received pursuant to the provisions of this Section. Only information pertaining to brain head and spinal cord injuries as defined in Section 1 of this Act shall be released to the Council.

(b) The Department shall not reveal the identity of a patient, physician or hospital, except that the identity of the patient may be released upon written consent of the patient, parent or guardian, the identity of the physician may be released upon written consent of the physician, and the identity of the hospital may be released upon written consent of the hospital.

(c) The Department shall request consent for release from a patient, a physician or hospital only upon a showing by the applicant for such release that obtaining the identities of certain patients, physicians or hospitals is necessary for his bonafide research directly related to the objectives of this Act.

(d) The Department shall at least annually compile a report of the data accumulated through the reporting system established under Section 2 of this Act and shall submit such data relating to spinal cord injuries and brain head injuries in accordance with confidentiality restrictions established pursuant to this Act to the Council.

(Source: P.A. 86-510.)

(410 ILCS 515/6) (from Ch. 111 1/2, par. 7856)

Sec. 6. Advisory Council.

(a) There is hereby created the Brain and Advisory Council on Spinal Cord Injury Advisory Council and Head Injuries within the Department of Human Services.

Until July 1, 2004 or when all of the new members to be initially appointed under this amendatory Act of the 93rd General Assembly have been appointed by the Governor, whichever occurs later, the Council shall consist of 29 members, appointed by the Governor with the advice and consent of the Senate. Members shall serve 3-year terms and until their successors are appointed by the Governor with the advice and consent of the Senate. The members appointed by the Governor shall include 2 neurosurgeons, 2 orthopedic surgeons, 2 rehabilitation specialists, one of whom shall be a registered nurse, 4 persons with head injuries or family members of persons with head injuries, 4 persons with spinal cord injuries or family members of persons with spinal cord injuries, a representative of an Illinois college or university, and a representative from health institutions or private industry. These members shall not serve more than 2 consecutive 3-year terms. The Governor shall appoint one individual from each of the following entities to the Council as ex-officio members: the unit of the Department of Human Services that is responsible for the administration of the vocational rehabilitation program, another unit within the Department of Human Services that provides services for individuals with disabilities, the State Board of Education, the Department of Public Health, the Department of Insurance, the Department of Public Aid, the Division of Specialized Care for Children of the University of Illinois, the Statewide Independent Living Council, and the State Rehabilitation Advisory Council. Ex-officio members are not subject to limit of 2 consecutive 3-year terms. The appointment of individuals representing State agencies shall be conditioned on their continued employment with their respective agencies.

The term of each appointed member of the Council who is in office on June 30, 2004 shall terminate at the close of business on that date or when all of the new members to be initially appointed under this amendatory Act of the 93rd General Assembly have been appointed by the Governor, whichever occurs later.

(a-5) Beginning on July 1, 2004 or when all of the new members to be initially appointed under this amendatory Act of the 93rd General Assembly have been appointed by the Governor, whichever occurs later, the Council shall consist of 12 individual members and 3 agency members appointed by the Governor with the advice and consent of the Senate.

The individual members appointed by the Governor shall consist of 2 physicians, one of whom specializes in the care and rehabilitation of persons with brain injury and one of whom specializes in the care and rehabilitation of persons with spinal cord injury; 2 rehabilitation therapists, one of whom specializes in the care and rehabilitation of persons with brain injury and one of whom specializes in the care and rehabilitation of persons with spinal cord injury; one certified rehabilitation registered nurse (CRRN); 2 persons with brain injury or family members of persons with brain injury; 2 persons with spinal cord injury or family members of persons with spinal cord injury; and one person affiliated with a health care institution; one advocate representing brain injuries from Illinois; and one advocate representing spinal cord injuries from Illinois.

The agency members appointed by the Governor shall consist of one representative of each of the following agencies: the unit within the Department of Human Services that provides services for individuals with disabilities; the State Board of Education; and the Division of Specialized Care for Children of the University of Illinois. The appointments of agency members shall be conditioned on their continued employment with their respective agencies.

Of the members initially appointed pursuant to this amendatory Act of the 93rd General Assembly, 5 shall be appointed for terms of one year, 5 shall be appointed for terms of 2 years, and 5 shall be appointed for terms of 3 years, and until their successors have been appointed and qualified. Thereafter, members shall be appointed for 3-year terms and until their successors have been appointed and qualified.

(b) From funds appropriated for such purpose, the Department of Human Services shall provide to the Council the necessary staff and expenses to carry out the duties and responsibilities assigned by the Council. Such staff shall consist of a director and other support staff.

(c) Meetings shall be held at least every 90 days or at the call of the Council chairman, who shall be appointed by the Governor from among the members of elected by the Council.

(d) Each member shall be reimbursed for reasonable and necessary expenses actually incurred in the performance of his official duties.

(e) The Council shall adopt written procedures to govern its activities. Consultants shall be provided for the Council from appropriations made for such purpose.

(f) The Council shall make recommendations to the Governor for developing and administering a State plan to provide services for persons with brain injury and persons with spinal cord injury and head injured persons.

(g) No member of the Council may participate in or seek to influence a decision or vote of the Council if the member would be directly involved with the matter or if he would derive income from it. A violation of this prohibition shall be grounds for a person to be removed as a member of the Council by the Governor.

(h) The Council shall:

(1) promote meetings and programs for the discussion of reducing the debilitating effects of brain injuries and spinal cord and head injuries and disseminate information in cooperation with any other department, agency or entity on the prevention, evaluation, care, treatment and rehabilitation of persons affected by brain injuries and spinal cord and head injuries;

(2) study and review current prevention, evaluation, care, treatment and rehabilitation technologies and recommend appropriate preparation, training, retraining and distribution of manpower and resources in the provision of services to persons with brain injury and spinal cord injury and head injured persons through private and public residential facilities, day programs and other specialized services;

(3) recommend specific methods, means and procedures which should be adopted to improve and upgrade the State's service delivery system for persons with brain injury and persons with spinal cord injury in and head injured citizens of this State;

(4) participate in developing and disseminating criteria and standards which may be required for future funding or licensing of facilities, day programs and other specialized services for persons with brain injury and persons with spinal cord injury and head injured persons in this State;

(5) report annually to the Governor and the General Assembly on its activities, and on the results of its studies and the recommendations of the Council; and

(6) be the advisory board for purposes of federal programs regarding traumatic brain injury.

(i) The Department of Human Services may accept on behalf of the Council federal funds, gifts and donations from individuals, private organizations and foundations, and any other funds that may become available.

(Source: P.A. 89-507, eff. 7-1-97; 90-453, eff. 8-16-97.)".