1-1     By:  Hunter, et al. (Senate Sponsor - Zaffirini)      H.B. No. 2984

 1-2           (In the Senate - Received from the House May 5, 1997;

 1-3     May 6, 1997, read first time and referred to Committee on Health

 1-4     and Human Services; May 18, 1997, reported favorably, as amended,

 1-5     by the following vote:  Yeas 8, Nays 0; May 18, 1997, sent to

 1-6     printer.)

 1-7     COMMITTEE AMENDMENT NO. 1                            By:  Zaffirini

 1-8           Amend H.B. No. 2984 by striking SECTION 3 of the bill and

 1-9     substituting the following:

1-10           SECTION 3.  This Act takes effect September 1, 1997, but only

1-11     if the 75th Legislature appropriates money to fund the pilot

1-12     program to assist medically fragile children and their families as

1-13     required by Section 35.015, Health and Safety Code, as added by

1-14     this Act.  The Texas Board of Health shall select an entity to run

1-15     the pilot program required under Section 35.017, Health and Safety

1-16     Code, as added by this Act, not later than January 1, 1998.

1-17                            A BILL TO BE ENTITLED

1-18                                   AN ACT

1-19     relating to the establishment of a pilot program regarding the

1-20     care, rehabilitation, and education of medically fragile children

1-21     and their families.

1-22           BE IT ENACTED BY THE LEGISLATURE OF THE STATE OF TEXAS:

1-23           SECTION 1.  Chapter 35, Health and Safety Code, is amended by

1-24     adding Sections 35.014-35.019 to read as follows:

1-25           Sec. 35.014.  CARE OF MEDICALLY FRAGILE CHILDREN; POLICY.

1-26     The legislature recognizes the expanding demographics of the

1-27     chronically ill children of this state and that the number of

1-28     children in need of long-term and short-term medical care is

1-29     expected to continue to increase at a potentially great cost to

1-30     this state.  The legislature recognizes that care for those

1-31     children provided jointly in private regional and community

1-32     settings is preferred and that significant savings to the state in

1-33     medical care, education, and public assistance can be achieved

1-34     through competent programs that recognize that social and cultural

1-35     needs must be both community-based and family-centered.  The

1-36     legislature finds that the issues regarding care for those children

1-37     are complex and varied and that there is a general need to study

1-38     and research these matters and develop a rational legislative and

1-39     executive response to the growing demand for a comprehensive,

1-40     cost-efficient, long-term care system.  The policy of this state is

1-41     to develop and maintain a cost-efficient, quality system to provide

1-42     care, continuity, maintenance, rehabilitation, and education for

1-43     chronically ill and disabled children and their families.  The

1-44     legislature recognizes that the development of that care poses

1-45     unique challenges for the health care system of this state.

1-46     Therefore, the legislature finds that the state should study and

1-47     research the unique health care, maintenance, education, social,

1-48     and related needs of medically fragile children and their families.

1-49           Sec. 35.015.  PILOT PROGRAM.  The board shall establish a

1-50     pilot program to study and research the unique health care,

1-51     maintenance, education, social, and related needs of medically

1-52     fragile children and their families in this state.  The board shall

1-53     select a nonprofit private entity to operate the pilot program.

1-54     The board may provide the entity that operates the pilot program a

1-55     grant in an amount not to exceed $400,000 during each fiscal year

1-56     to cover the costs of operating the program.

1-57           Sec. 35.016.  PROGRAM CRITERIA.  The board shall require the

1-58     pilot program study to include:

1-59                 (1)  specialized case management involving

1-60     24-hour-a-day availability for family support and information

1-61     relating to the specialized needs of medically fragile children,

1-62     including educational assistance, referrals to service providers,

1-63     assistance with educational issues, skilled nursing care, and

1-64     continuity of care in overall coordination with service providers;

 2-1                 (2)  parent mentor programs to educate and assist

 2-2     parents of medically fragile children;

 2-3                 (3)  support services for clients, siblings, and

 2-4     parents, including individual, group, and family therapy;

 2-5                 (4)  respite services that emphasize family involvement

 2-6     and support, including temporary child supervisory services for

 2-7     parents of medically fragile children and their healthy siblings;

 2-8                 (5)  a resource library that includes information in

 2-9     printed form and computer resources;

2-10                 (6)  medically supervised day care that recognizes the

2-11     need to reduce or make more efficient the state's financial

2-12     Medicaid support, while ensuring quality of life through

2-13     socialization and inclusion of medically fragile children in a

2-14     healthy and stable environment;

2-15                 (7)  pediatric home nursing, to recognize long-term

2-16     stability and cost reductions; and

2-17                 (8)  other criteria that the board finds in the public

2-18     interest.

2-19           Sec. 35.017.  SELECTION.  In selecting an entity to operate

2-20     the pilot program, the board shall consider the extent to which an

2-21     entity:

2-22                 (1)  demonstrates the immediate ability to provide the

2-23     services listed in Section 35.016 in a cost-efficient manner;

2-24                 (2)  is able to provide services on a regional basis,

2-25     including the ability to address the needs of medically fragile

2-26     children and their families in surrounding rural areas; and

2-27                 (3)  has a demonstrated record showing its ability to

2-28     meet the criteria specified in Section 35.016.

2-29           Sec. 35.018.  TERM; REPORT AND REVIEW.  (a)  The selection of

2-30     an entity to operate the pilot program is effective until the fifth

2-31     anniversary of the selection date.

2-32           (b)  The board shall monitor and review the pilot program and

2-33     deliver a report on the program to the Sunset Advisory Commission

2-34     on or before February 1, 2000.  In its report, the board shall:

2-35                 (1)  address the medical, social, educational, and

2-36     cultural benefits of the program to the state's medically fragile

2-37     children and their families;

2-38                 (2)  review the overall cost savings to the state of

2-39     the program, including intangible savings and benefits involving

2-40     any general welfare reform measures such as the return of parents

2-41     of medically fragile children to the workplace and cost savings at

2-42     the local level to affected activities of counties, municipalities,

2-43     educational institutions, and other governmental entities; and

2-44                 (3)  provide recommendations regarding the future of

2-45     the program, including its continuation, modification, expansion

2-46     through replicability, or limitation.

2-47           (c)  The Sunset Advisory Commission shall review the report

2-48     submitted by the board and include any appropriate recommendations

2-49     regarding the pilot program in its report to the 77th Legislature.

2-50           Sec. 35.019.  RULES.  The board may adopt rules to implement

2-51     this section and to obtain the necessary reports and records to

2-52     fulfill its monitoring and reporting requirement to the Sunset

2-53     Advisory Commission and the legislature.

2-54           SECTION 2.  Section 35.002, Health and Safety Code, is

2-55     amended by adding a new Subdivision (9) and renumbering

2-56     Subdivisions (9)-(16) as Subdivisions (10)-(17) to read as follows:

2-57                 (9)  "Medically fragile child" means a person younger

2-58     than 21 years of age who is:

2-59                       (A)  chronically ill or disabled and requires

2-60     indefinite skilled nursing care to maintain the person's existence

2-61     in the person's home;

2-62                       (B)  temporarily ill or disabled because of

2-63     premature birth, accident, or trauma and has experienced a

2-64     temporary lifestyle change requiring skilled nursing care;

2-65                       (C)  suffering from uncontrollable seizures,

2-66     diabetes, asthma, or other chronic illness; or

2-67                       (D)  chronically dependent on medical devices to

2-68     perform vital bodily functions.

2-69                 (10) [(9)]  "Other benefit" means a benefit, other than

 3-1     a benefit provided under this chapter, to which a person is

 3-2     entitled for payment of the costs of services provided under the

 3-3     program, including benefits available from:

 3-4                       (A)  an insurance policy, group health plan,

 3-5     health maintenance organization, or prepaid medical or dental care

 3-6     plan;

 3-7                       (B)  Title XVIII or Title XIX of the Social

 3-8     Security Act (42 U.S.C.  Sections 1395 et seq. and 1396 et seq.);

 3-9                       (C)  the Veterans Administration;

3-10                       (D)  the Civilian Health and Medical Program of

3-11     the Uniformed Services;

3-12                       (E)  workers' compensation or any other

3-13     compulsory employers' insurance program;

3-14                       (F)  a public program created by federal or state

3-15     law or the ordinances or rules of a municipality or other political

3-16     subdivision of the state, excluding benefits created by the

3-17     establishment of a municipal or county hospital, a joint

3-18     municipal-county hospital, a county hospital authority, a hospital

3-19     district, or the facilities of a publicly supported medical school;

3-20     or

3-21                       (G)  a cause of action for the cost of care,

3-22     including medical care, dental care, facility care, and medical

3-23     supplies, required for a person applying for or receiving services

3-24     from the department, or a settlement or judgment based on the cause

3-25     of action, if the expenses are related to the need for services

3-26     provided under this chapter.

3-27                 (11) [(10)]  "Physician" means a person licensed by the

3-28     Texas State Board of Medical Examiners to practice medicine in this

3-29     state.

3-30                 (12) [(11)]  "Program" means the chronically ill and

3-31     disabled children's services program.

3-32                 (13) [(12)]  "Provider" means a person who delivers

3-33     services purchased by the department for the purposes of this

3-34     chapter.

3-35                 (14) [(13)]  "Rehabilitation services" means the

3-36     process of the physical restoration of a body function destroyed or

3-37     impaired by congenital defect, disease, or injury, and includes:

3-38                       (A)  facility care, medical and dental care,

3-39     optometric care, and occupational and physical therapy;

3-40                       (B)  the provision of braces, artificial

3-41     appliances, durable medical equipment, and other medical supplies;

3-42     and

3-43                       (C)  other types of care specified by the board

3-44     in the program rules.

3-45                 (15) [(14)]  "Services" means the care, activities, and

3-46     supplies provided under this chapter or program rules, including

3-47     medical care, dental care, facility care, medical supplies,

3-48     occupational and physical therapy, and other care specified by

3-49     program rules.

3-50                 (16) [(15)]  "Specialty center" means a facility and

3-51     staff that meets minimum standards established under the program

3-52     and is designated by the board for program use in the comprehensive

3-53     diagnostic and treatment services for a specific medical condition.

3-54                 (17) [(16)]  "Support" means to contribute money or

3-55     services necessary for a person's maintenance, including food,

3-56     clothing, shelter, transportation, and health care.

3-57           SECTION 3.  This Act takes effect September 1, 1997.  The

3-58     Texas Board of Health shall select an entity to run the pilot

3-59     program to assist medically fragile children and their families as

3-60     required under Section 35.017, Health and Safety Code, as added by

3-61     this Act, not later than January 1, 1998.

3-62           SECTION 4.  The importance of this legislation and the

3-63     crowded condition of the calendars in both houses create an

3-64     emergency and an imperative public necessity that the

3-65     constitutional rule requiring bills to be read on three several

3-66     days in each house be suspended, and this rule is hereby suspended.

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