By Hunter, et al. H.B. No. 2984
75R8046 SKB-F
A BILL TO BE ENTITLED
1-1 AN ACT
1-2 relating to the establishment of a pilot program regarding the
1-3 care, rehabilitation, and education of medically fragile children
1-4 and their families.
1-5 BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:
1-6 SECTION 1. Chapter 35, Health and Safety Code, is amended by
1-7 adding Sections 35.014-35.019 to read as follows:
1-8 Sec. 35.014. CARE OF MEDICALLY FRAGILE CHILDREN; POLICY.
1-9 The legislature recognizes the expanding demographics of the
1-10 chronically ill children of this state and that the number of
1-11 children in need of long-term and short-term medical care is
1-12 expected to continue to increase at a potentially great cost to
1-13 this state. The legislature recognizes that care for those
1-14 children provided jointly in private regional and community
1-15 settings is preferred and that significant savings to the state in
1-16 medical care, education, and public assistance can be achieved
1-17 through competent programs that recognize that social and cultural
1-18 needs must be both community-based and family-centered. The
1-19 legislature finds that the issues regarding care for those children
1-20 are complex and varied and that there is a general need to study
1-21 and research these matters and develop a rational legislative and
1-22 executive response to the growing demand for a comprehensive,
1-23 cost-efficient, long-term care system. The policy of this state is
1-24 to develop and maintain a cost-efficient, quality system to provide
2-1 care, continuity, maintenance, rehabilitation, and education for
2-2 chronically ill and disabled children and their families. The
2-3 legislature recognizes that the development of that care poses
2-4 unique challenges for the health care system of this state.
2-5 Therefore, the legislature finds that the state should study and
2-6 research the unique health care, maintenance, education, social,
2-7 and related needs of medically fragile children and their families.
2-8 Sec. 35.015. PILOT PROGRAM. The board shall establish a
2-9 pilot program to study and research the unique health care,
2-10 maintenance, education, social, and related needs of medically
2-11 fragile children and their families in this state. The board shall
2-12 select a nonprofit private entity to operate the pilot program.
2-13 The board may provide the entity that operates the pilot program a
2-14 grant in an amount not to exceed $400,000 during each fiscal year
2-15 to cover the costs of operating the program.
2-16 Sec. 35.016. PROGRAM CRITERIA. The board shall require the
2-17 pilot program study to include:
2-18 (1) specialized case management involving
2-19 24-hour-a-day availability for family support and information
2-20 relating to the specialized needs of medically fragile children,
2-21 including educational assistance, referrals to service providers,
2-22 assistance with educational issues, skilled nursing care, and
2-23 continuity of care in overall coordination with service providers;
2-24 (2) parent mentor programs to educate and assist
2-25 parents of medically fragile children;
2-26 (3) support services for clients, siblings, and
2-27 parents, including individual, group, and family therapy;
3-1 (4) respite services that emphasize family involvement
3-2 and support, including temporary child supervisory services for
3-3 parents of medically fragile children and their healthy siblings;
3-4 (5) a resource library that includes information in
3-5 printed form and computer resources;
3-6 (6) medically supervised day care that recognizes the
3-7 need to reduce or make more efficient the state's financial
3-8 Medicaid support, while ensuring quality of life through
3-9 socialization and inclusion of medically fragile children in a
3-10 healthy and stable environment;
3-11 (7) pediatric home nursing, to recognize long-term
3-12 stability and cost reductions; and
3-13 (8) other criteria that the board finds in the public
3-14 interest.
3-15 Sec. 35.017. SELECTION. In selecting an entity to operate
3-16 the pilot program, the board shall consider the extent to which an
3-17 entity:
3-18 (1) demonstrates the immediate ability to provide the
3-19 services listed in Section 35.016 in a cost-efficient manner;
3-20 (2) is able to provide services on a regional basis,
3-21 including the ability to address the needs of medically fragile
3-22 children and their families in surrounding rural areas; and
3-23 (3) has a demonstrated record showing its ability to
3-24 meet the criteria specified in Section 35.016.
3-25 Sec. 35.018. TERM; REPORT AND REVIEW. (a) The selection of
3-26 an entity to operate the pilot program is effective until the fifth
3-27 anniversary of the selection date.
4-1 (b) The board shall monitor and review the pilot program and
4-2 deliver a report on the program to the Sunset Advisory Commission
4-3 on or before September 1, 2000. The commission shall make
4-4 recommendations to the legislature by January 1, 2001, with regard
4-5 to the extension or modification of the program. In the review and
4-6 reports, the board and the commission shall:
4-7 (1) address the medical, social, educational, and
4-8 cultural benefits of the program to the state's medically fragile
4-9 children and their families;
4-10 (2) review the overall cost savings to the state of
4-11 the program, including intangible savings and benefits involving
4-12 any general welfare reform measures such as the return of parents
4-13 of medically fragile children to the workplace and cost savings at
4-14 the local level to affected activities of counties, municipalities,
4-15 educational institutions, and other governmental entities; and
4-16 (3) provide recommendations regarding the future of
4-17 the program, including its continuation, expansion through
4-18 replicability, or limitation.
4-19 Sec. 35.019. RULES. The board may adopt rules to implement
4-20 this section and to obtain the necessary reports and records to
4-21 fulfill its monitoring and reporting requirement to the Sunset
4-22 Advisory Commission and the legislature.
4-23 SECTION 2. Section 35.002, Health and Safety Code, is
4-24 amended by adding a new Subdivision (9) and renumbering
4-25 Subdivisions (9)-(16) as Subdivisions (10)-(17) to read as follows:
4-26 (9) "Medically fragile child" means a person younger
4-27 than 21 years of age who is:
5-1 (A) chronically ill or disabled and requires
5-2 indefinite skilled nursing care to maintain the person's existence
5-3 in the person's home;
5-4 (B) temporarily ill or disabled because of
5-5 premature birth, accident, or trauma and has experienced a
5-6 temporary lifestyle change requiring skilled nursing care;
5-7 (C) suffering from uncontrollable seizures,
5-8 diabetes, asthma, or other chronic illness; or
5-9 (D) chronically dependent on medical devices to
5-10 perform vital bodily functions.
5-11 (10) [(9)] "Other benefit" means a benefit, other than
5-12 a benefit provided under this chapter, to which a person is
5-13 entitled for payment of the costs of services provided under the
5-14 program, including benefits available from:
5-15 (A) an insurance policy, group health plan,
5-16 health maintenance organization, or prepaid medical or dental care
5-17 plan;
5-18 (B) Title XVIII or Title XIX of the Social
5-19 Security Act (42 U.S.C. Sections 1395 et seq. and 1396 et seq.);
5-20 (C) the Veterans Administration;
5-21 (D) the Civilian Health and Medical Program of
5-22 the Uniformed Services;
5-23 (E) workers' compensation or any other
5-24 compulsory employers' insurance program;
5-25 (F) a public program created by federal or state
5-26 law or the ordinances or rules of a municipality or other political
5-27 subdivision of the state, excluding benefits created by the
6-1 establishment of a municipal or county hospital, a joint
6-2 municipal-county hospital, a county hospital authority, a hospital
6-3 district, or the facilities of a publicly supported medical school;
6-4 or
6-5 (G) a cause of action for the cost of care,
6-6 including medical care, dental care, facility care, and medical
6-7 supplies, required for a person applying for or receiving services
6-8 from the department, or a settlement or judgment based on the cause
6-9 of action, if the expenses are related to the need for services
6-10 provided under this chapter.
6-11 (11) [(10)] "Physician" means a person licensed by the
6-12 Texas State Board of Medical Examiners to practice medicine in this
6-13 state.
6-14 (12) [(11)] "Program" means the chronically ill and
6-15 disabled children's services program.
6-16 (13) [(12)] "Provider" means a person who delivers
6-17 services purchased by the department for the purposes of this
6-18 chapter.
6-19 (14) [(13)] "Rehabilitation services" means the
6-20 process of the physical restoration of a body function destroyed or
6-21 impaired by congenital defect, disease, or injury, and includes:
6-22 (A) facility care, medical and dental care,
6-23 optometric care, and occupational and physical therapy;
6-24 (B) the provision of braces, artificial
6-25 appliances, durable medical equipment, and other medical supplies;
6-26 and
6-27 (C) other types of care specified by the board
7-1 in the program rules.
7-2 (15) [(14)] "Services" means the care, activities, and
7-3 supplies provided under this chapter or program rules, including
7-4 medical care, dental care, facility care, medical supplies,
7-5 occupational and physical therapy, and other care specified by
7-6 program rules.
7-7 (16) [(15)] "Specialty center" means a facility and
7-8 staff that meets minimum standards established under the program
7-9 and is designated by the board for program use in the comprehensive
7-10 diagnostic and treatment services for a specific medical condition.
7-11 (17) [(16)] "Support" means to contribute money or
7-12 services necessary for a person's maintenance, including food,
7-13 clothing, shelter, transportation, and health care.
7-14 SECTION 3. This Act takes effect September 1, 1997. The
7-15 Texas Board of Health shall select an entity to run the pilot
7-16 program to assist medically fragile children and their families as
7-17 required under Section 35.017, Health and Safety Code, as added by
7-18 this Act, not later than January 1, 1998.
7-19 SECTION 4. The importance of this legislation and the
7-20 crowded condition of the calendars in both houses create an
7-21 emergency and an imperative public necessity that the
7-22 constitutional rule requiring bills to be read on three several
7-23 days in each house be suspended, and this rule is hereby suspended.