Esta ley establece la "Ley para el Desarrollo de la Política Pública del Estado Libre Asociado de Puerto Rico Relacionada con la Población con Trastornos del Espectro Autista". Designa al Departamento de Salud como la agencia principal para la creación, desarrollo e implementación de esta política pública. Crea el Comité Interagencial de Política Pública sobre Trastornos del Espectro Autista, estableciendo su organización, funciones y deberes. La ley busca abordar el crecimiento alarmante del autismo en la población infantil, promoviendo servicios integrados y coordinados entre agencias gubernamentales y entidades privadas.
(Approved December 28, 2003)
To establish the "Act for the Development of the Public Policy of the Commonwealth of Puerto Rico Concerning the Population with Autism Related Disorders;" designate the Department of Health of the Commonwealth of Puerto Rico as the leading agency in the creation, development and implementation of the public policy of the Commonwealth of Puerto Rico concerning Autism-Related Disorders; establish the Public Policy Inter-agency Committee On the Public Policy concerning Autism-Related Disorders; and establish its organization, functions and duties; consign its budget; and for other purposes.
Autism is a severe and chronic development disability that normally appears during the first three (3) years of life. It is found in all races, ethnicities and social classes throughout the world. There is no known direct cause factor for Autism in the child's psychological environment.
The symptoms, caused by neurological disorders include:
The United States Congress has stated that, the best national estimates in the United States indicate that 1 in every 250 children born today shall be diagnosed with Autism, and that 400,000 Americans have Autism or a disorder related to Autism.
Autism can be manifested alone, or in conjunction with other disorders that affect neurological functions, such as viral infections, metabolic disturbances and epilepsy. It is important to distinguish Autism from mental retardation, because an inadequate diagnosis may entail inadequate or ineffective treatment. The severe form of the Autism syndrome may include extreme self-aggressive, repetitive, and abnormally aggressive behavior. It has been proven that the most effective treatment is to use special education programs with behavior modification methods.
Most of the studies have stipulated that Autism is treatable therefore, early diagnosis and intervention are vital for the future development of the child that suffers this condition. Many parents, tutors or legal representatives who have a minor child with this condition deal with the treatment, thereof from day today, and face the peremptory need to self-educate themselves regarding the latest discoveries for addressing the condition in order to offer their children a better quality of life.
Therefore, this Legislature understands that, at present, Autism is the fastest-growing childhood affliction. In view of this fact, we consider it proper to set forth this Act, so that the Commonwealth may address this alarming growth, through an Inter-agency Committee that can recommend strategies to be followed to the Department of Health in order to render integrated services; not only the medical aspects to address this illness, but also to integrate agencies and instrumentalities of the Commonwealth of
Puerto Rico for the rendering of the government services in Puerto Rico.
Section 1.- Creation of the Act This Act shall be known as the "Act for the Development of the Public Policy of the Commonwealth of Puerto Rico Concerning its Population with Autism Related Disorders."
Section 2.- Leading Agency The Department of Health of the Commonwealth of Puerto Rico is hereby designated as the leading agency in the development and implementation of the Public Policy of the Commonwealth of Puerto Rico concerning its population with autism-related disorders.
Section 3.- Inter-agency Committee on Public Policy on Autism Related Disorders
The Inter-agency Committee On Public Policy on Autism-Related Disorders (hereinafter "Inter-agency Committee") is hereby created, which shall consist of a multi-disciplinary inter-agency group composed of the Secretary of Health or his/her representative, who shall chair the Committee, and a representative of each of the following agencies, organizations or entities: a. Department of the Family b. Department of Education c. Vocational Rehabilitation Administration d. Department of Housing e. Office of the First Lady of "La Fortaleza" f. Department of Addiction and Mental Health Services g. College of Social Workers h. Puerto Rico Psychologists Association
i. Puerto Rico Academy of Psychiatry j. Academy of Pediatrics - Puerto Rico Chapter k. Puerto Rico Surgeons Association
In the case of agencies or government entities, the person who shall direct the Inter-agency Committee shall be the Secretary or Administrator of said agency or his/her representative. In addition to all of the agencies, organizations and entities included, the Secretary may include, of his own accord, or upon the recommendation of the Inter-agency Committee, any other entity needed to further the purposes of this Act.
Members of the Inter-agency Committee are required to meet any of the following: academic studies in the field of identification, diagnosis and treatment of Autism Disorders, or wide-ranging experience in rendering services or care of persons with Autism Disorders.
Section 4.- Public Policy The public policy shall be developed with the collaboration and advice of the Inter-agency Committee. Based on this, it shall be the duty of the
Inter-agency Committee to draft the public policy that shall govern the Commonwealth of Puerto Rico regarding the population with Autism Disorders. Once three quarters (34) of the members of the Inter-agency Committee have approved the public policy to be followed, it shall be presented to the Secretary of Health for his/her approval and signature. With the participation of the members of the Inter-agency Committee, the public policy shall be distributed throughout the agencies, instrumentalities, municipalities, entities, organizations and to all appropriate personnel. It shall be the duty of all agencies, instrumentalities, public and private entities and organizations that receive funds from the Commonwealth of Puerto Rico, to comply with the public policy to be created under the parameters of in this Act. Furthermore, the Inter-agency Committee shall draft a Bill to be presented to the Secretary of Health, who shall, in turn, submit it to the Governor of the Commonwealth of Puerto Rico, whereby the public policy established by the Inter-agency Committee pursuant to this Act, shall be established by legislation and the specific obligations of each agency, instrumentality, municipality or government entities shall be established, with regard to the rendering of services to the population suffering Autism in Puerto Rico.
Section 5.- Functions and Duties of the Inter-agency Committee Without it being understood as a limitation, the Inter-agency Committee, shall have the following functions:
(a) Identify, study and evaluate all problems and needs related to Autism in Puerto Rico, taking into consideration their extent and impact on the family and the community.
(b) Offer information and technical counseling to the Department of Health for the implementation of the public policy promulgated hereby.
(c) Generated statistics on the population with Autism, its needs, the services rendered by the agencies, and the matters requiring attention that are not being addressed.
(d) Establish and create a unique and uniform protocol that includes guidelines for early identification, diagnosis and evaluation for the planning of the services for the population with Autism disorders.
(e) Establish the responsibilities and the collaboration of the different agencies, and public and private entities and organizations for the rendering of services to the population with Autism, pursuant to state and federal legislation in effect. In addition, it shall coordinate the planning, norms, activities and services of the different agencies of the state and municipal governments, as well as the volunteer agencies and organizations regarding services for the population with Autism, without impairing or interfering with other functions, powers and duties of these agencies or public or private organizations, and shall make recommendations for the same purpose to organizations, volunteers and other private entities.
(f) Study and implement guidelines on the licensing requirements, education and training of the professionals that are deemed qualified to render services to the autistic population.
(g) Issue recommendations for personnel development and professional improvement systems, including continuing
education for health professionals, or professionals who assist or render services to persons with Autism.
(h) Perform annual evaluations and monitoring of the effects of the special education program on the autistic population under the care of the Department of Education.
(i) Study and analyze any program, method, legislation or administrative order that has been implemented successfully in the United States or any other place, to care for the population with Autism.
(j) Establish regulation models or administrative orders to be used by the agencies, public corporations and instrumentalities of the Commonwealth for the rendering of services to persons with Autism.
(k) Receive information and hear the concerns of citizens and interest groups in the community regarding the population with Autism to be studied by the Inter-agency Committee, to make recommendations on the concerns brought before it. (1) Obtain professional and technical advice from external sources to comply with its duties or responsibilities.
(m) Make recommendations to the Governor and the Legislature regarding any legislative measure that affects the population with Autism directly or indirectly.
(n) Adopt such pertinent rules, regulations and forms needed to achieve the purposes pursued by this Act within six (6) months after the approval thereof.
(o) Perform all the functions that are necessary to carry out the purposes of this Act.
The Secretary of Health may convoke the Interdisciplinary Committee as often as he/she deems necessary but not less than once (1) every two (2) months. In order to meet and establish a "quorum", at least ten (10) members must attend. Absolute majority of the votes of the members shall be required for the approval of any decision made by the Committee.
The Inter-agency Committee shall be bound to carry out a revision of the public policy every two (2) years, and update it, if appropriate, according to the latest advances in scientific research.
Section 8.- Collaboration of the Office of the Advocate for Persons with Disabilities with the Inter-agency Committee
When so requested by the Secretary of Health, or by petition of the Inter-agency Committee created pursuant to this Act, the Office of the Advocate for Persons with Disabilities shall provide the pertinent advise regarding the available services, legislation in effect, or the creation of administrative orders or the necessary regulations to be adopted for the implementation of this Act.
Section 9.- Budget The Department of Health shall be responsible for requesting the needed funds in the budget for fiscal year beginning July 1, 2004, as well as for subsequent years, for the functioning and compliance of the stipulations of this Act. However, the Secretary of Health is hereby empowered to accept donations to be used in the prevention, treatment, education, research, investigations of Autism Disorders, and other similar purposes. The monies thus obtained shall be used exclusively as provided in this Act. Likewise, in
order to comply with the purposes and functions that arise from this Act, the Department of Health, without being understood to be limited thereto, is hereby empowered to receive, solicit, accept and administer such funds originating from legislative appropriations, or from grants of the Government of the United States, the Central Government, or from Municipal Governments of the Commonwealth of Puerto Rico, and from agencies, public corporations, political subdivisions, and branches or instrumentalities of said governments, as well as contributions from local or foreign individuals, entities or private organizations.
Section 10.- Severability Clause If any clause of this Act were declared to be unconstitutional or null, said ruling shall not affect the remaining parts hereof.
Section 11.- Effectiveness This Act shall take effect immediately after its approval.
I hereby certify to the Secretary of State that the following Act No. 318 (H.B. 3789) of the $6^{ ext {th }}$ Session of the $14^{ ext {th }}$ Legislature of Puerto Rico:
AN ACT to establish the "Act for the Development of the Public Policy of the Commonwealth of Puerto Rico Concerning the Population with Autism Related Disorders;" designate the Department of Health of the Commonwealth of Puerto Rico as the leading agency in the creation, development and implementation of the public policy of the Commonwealth of Puerto Rico concerning its Autism-Related Disorders; establish the Public Policy Interagency Committee On the Public Policy concerning Autism-Related Disorders; etc., has been translated from Spanish to English and that the English version is correct.
In San Juan, Puerto Rico, today 29 of October of 2004.
Elba Rosa Rodríguez-Fuentes Director