Chapter 126-J: Council for Youths with Chronic Conditions

I. There is established the council for youths with chronic conditions and their families which shall consist of the following members:

(a) One member of the senate, appointed by the senate president.

(b) One member of the house of representatives, appointed by the speaker of the house.

(c) One representative of the department of health and human services, appointed by the commissioner.

(d) One representative of the department of education, appointed by the commissioner.

(e) One representative of the insurance department, appointed by the commissioner.

(f) A director from a community-based agency which has been charged by the council with providing support and services to youths with chronic conditions and their families.

(g) Up to 6 representatives of professional and community organizations, which shall represent a cross-section of disciplines and constituencies such as, but not limited to, physicians, nurses, and educators, appointed by the council in accordance with its bylaws.

(h) Up to 13 members who are the parent or guardian of a youth with a chronic condition, appointed by the council in accordance with its bylaws.

(i) One parent or guardian of a youth with a chronic condition, appointed by the governor.

(j) One member, who is less than 30 years of age and who has a chronic condition, appointed by the chairperson of the council.

II. Terms of office shall be for 3 years, except that legislative members shall serve the terms of their office. No member shall serve more than 2 full consecutive terms. One third of the total members' terms shall expire annually as established in the bylaws.

III. Members shall elect annually from among their number a chairperson and such other officers as they may determine.

IV. Legislative members shall receive mileage at the legislative rate.

The council may establish such standing committees, ad hoc committees, or task forces as it deems appropriate to carry out the mission of the council.

The council shall:

I. Promote the organized assessment of the needs of youths with chronic conditions and their families.

II. Serve in an advisory capacity to the department of health and human services, department of education, and insurance department for policy and program development.

III. Collaborate with the department of health and human services, the department of education, and other public and private organizations statewide to enhance community-based family supports that meet the unique needs of youths with chronic conditions and their families.

IV. Increase awareness in the public and private sector of the medical, social, and educational issues which impact youths with chronic conditions and their families.

The department of health and human services, department of education, and the insurance department shall provide to the council available data, consistent with confidentiality requirements, relevant to the needs of this population.

The council shall report annually on or before December 1 to the governor and the general court regarding the progress being made to provide services and support to youths with chronic conditions and their families in regular educational and medical environments allowing them to remain in or near their own homes and communities.

The council may solicit, expend, and disburse funds from the state and federal government, as well as private grants and funds, for the purposes of this chapter. It may also enter into contracts as necessary to carry out its purpose.