(H. B. 2278) (Conference) (No. 220-2012) (Approved September 4, 2012) AN ACT To enact the Act for the Wellbeing, Integration, and Development of Persons with Autism, which may be cited as BIDA Act, related to the Autism Spectrum Disorder Population in Puerto Rico; set forth the public policy of the Government of Puerto Rico regarding this population; promote the early detection, diagnostic, and intervention of this disorder; provide for the creation of a Family Support Program; provide for the specialized continuing education of health professionals who work with persons with this disorder; provide for mandatory health coverage for the Autism Spectrum Disorder population; create the Steering Committee to evaluate the enforcement of this public policy and provide for the implementation thereof; establish penalties; repeal Act No. 318-2003, as amended, known as the Act for the Development of the Public Policy of the Commonwealth of Puerto Rico concerning its Population with Autism-related Disorders ; repeal Act No. 103-2004, known as the Bill of Rights for Children and Adults with Autism ; and for other related purposes. STATEMENT OF MOTIVES The drastic growth in the number of children diagnosed with Autism Spectrum Disorder in Puerto Rico and the United States of America constitutes a public health crisis that must be addressed according to the Centers for Disease Control and Prevention (CDC), Health Resources and Services Administration (HRSA), and the Autism Society of America (ASA). Autism Spectrum Disorders (ASD) are developmental disabilities that can cause significant social, communication, and behavioral challenges as a result of a difference in the way that the brain processes sensorial information. People with ASD may communicate, interact, behave, and learn in ways that are different from most other
2 people. The Autism Society of America states that Autism Spectrum Disorder and its associated behaviors could result from the disruption of normal brain development. The most recent data of the United States of America gathered in an HRSA survey conducted among families, reveal that Autism Spectrum Disorder affects 1 in 91 children, according to data from the CDC. Autism is four (4) times more common among boys than among girls, and is reported to occur in all racial, ethnic, and socioeconomic groups. General statistics on the epidemic growth in the United States of America show that births of children with ASD increased from 1 in 10,000 in the 1940s to 1 in 2,500 in the 1970s. Moreover, prevalence of ASD drastically increased from 1 in 323 in the 1990s to 1 in 110 in 2006, according to data from the CDC. From 1994 to 2005, children with ASD between ages 6 and 21 years who received treatment for their condition increased from 22,664 to 193,637, and these numbers do not include all children with Autism Spectrum Disorder. The latest data published by the CDC show that by 2007, 1 in 150 children were born with ASD, and by 2009 it increased to 1 in 91. A comparison in the growth of Autism Spectrum Disorder in the 1990s shows: - A thirteen percent (13%)-increase in the United States population. - A sixteen percent (16%)-increase in persons with disabilities. - A one hundred seventy-two percent (172%)-increase in persons with Autism Spectrum Disorder. Autism Society of America estimates show that the cost of living to care for a person with Autism in the United States ranges between $3.5 and $5 million. The aggregated annual cost of services for persons with ASD for 2010 was estimated at $90 billion, and ninety percent (90%) of those costs are for services rendered to
3 adults. The lifetime care cost may be reduced by two-thirds (2/3) with early diagnosis and intervention. In ten (10) years, the annual costs in the United States have been estimated between $200 and $400 billion. Autism Spectrum Disorders have the highest growth rate ranging between seventeen percent (17%) and twenty percent (20%) annually. More children are diagnosed with Autism Spectrum Disorder than with cancer, diabetes, and pediatric AIDS combined. Prevalence ranks Autism as the third most common developmental disability, even more common than Down syndrome. From April to October 2011, the Department of Health conducted the first survey on autism prevalence in Puerto Rico. Said survey showed that nearly 28,745 persons from different ages in Puerto Rico suffer from autism. The first data on autism prevalence in children between ages 4 and 17 years show that Puerto Rico has one of the highest rates worldwide. Experts agreed that this rate shall continue to grow. The survey revealed that there are 11,743 autistic children in the Island, that is, one point sixty-two percent (1.62%) of the population between ages 4 and 17 years. Data also indicate that 1 in 62 babies born every year are very likely to develop autism. Moved by the empirical data from the April 2012 study, the Department of Health inaugurated the Autism Center in the Medical Center facilities. Said Autism Center is administered by the Graduate School of Public Health of the University of Puerto Rico Medical Sciences Campus (RCM, Spanish acronym). Diagnosis and referral services for children between the ages of cero (0) and five (5) years who live in the San Juan Region are offered in said facilities. It is also a practice center for psychology, social work, and psychiatry professionals.
4 The Head Start Program throughout the Island has opened six (6) Centers for Inclusion for children with Autism Spectrum Disorder. This number does not include persons who receive private services, those who have left the island due to lack of services, and those who simply have never been diagnosed. Early behavioral signs associated to Autism Spectrum Disorder are shown since the age of three (3) years. We have the duty to guarantee that children who have an ASD disorder are identified and receive essential and proper services as early as possible. In doing this, their quality of life will significantly improve, thus enabling them to achieve their independence, and reducing long-term care relatedcosts. In Puerto Rico, Act No. 318-2003, as amended, established the Act for the Development of the Public Policy of the Commonwealth of Puerto Rico Concerning the Population with Autism Related Disorders. Said Act designated 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 Government of Puerto Rico concerning Autism-Related Disorders, and established the Public Policy Inter-agency Committee on the Public Policy concerning Autism-Related Disorders, which was also a multi-disciplinary group. Subsequently, Act No. 122-2006 was approved to amend Act No. 318-2003, supra, for the purpose of restructuring the number of members of the Interagency Committee; creating an Advisory Committee of the Interagency Committee on Public Policy; establishing the functions of the Committee; and establishing quorum requirements. In accordance with Act No. 318-2003, supra, the Department of Health, in conjunction with the Interagency Committee, drafted a proposal for the Public Policy of the Government of Puerto Rico on the Autism Spectrum Disorder population, thus complying with the provisions of said Act.
5 Persons with Autism Spectrum Disorder are an essential part of our society. It is our duty, as a people, to maximize the opportunities offered to this population to live their lives to the fullest. For such reason, it is of utmost importance to provide this population with the necessary tools that allow them to receive and have access to the required services. Both the private and the public sector play a critical role in the implementation of this Public Policy. Thus, we must incorporate the principle of efficient intersectoral care coordination and, most importantly, the principle of shared responsibilities in the formation of partnerships among all sectors involved. Assuming responsibilities is critical to achieve the development of the population. The main goal of this public policy is to develop and establish a clear perspective and a coordinated care system based on the principles provided for herein, which recognize that persons with Autism Spectrum Disorder are entitled to more and better opportunities that enable their full development. We recognize that the success of this effort depends on the collaboration of all the sectors that, in one way or another, work or live with these persons, namely, family members, the government, municipalities, community organizations, and the academia, among others. Society in general, families, parents, and professionals who render healthcare, educational, and occupational services are required to learn how Autism Spectrum Disorders affect persons suffering from them and their families, in order to work and effectively address their special needs. Section 20 of Article II of the Constitution of Puerto Rico recognizes the right of every person to a standard of living adequate for the health and well-being of himself and of his family, and especially to food, clothing, housing and medical
6 care and necessary social services. Therefore, this Legislative Assembly deems it necessary to establish the Public Policy of the Government of Puerto Rico to guarantee the rendering of services to the Autism Spectrum Disorder population throughout their lives. BE IT ENACTED BY THE LEGISLATIVE ASSEMBLY OF PUERTO RICO: Section 1.- Title of the Act. This Act shall be known as the Act for the Wellbeing, Integration, and Development of Persons with Autism, or BIDA (Spanish acronym). Section 2.- Declaration of Public Policy. It shall be the public policy of the Government of Puerto Rico to promote the research, development, screening, and rendering of services to persons with an Autism Spectrum Disorder for the purpose of guaranteeing their right to have an independent life and develop their abilities to the maximum extent possible. For such reason, it is necessary to implement strategies geared toward promoting research, development, screening, and rendering of services to this population. Furthermore, it shall be public policy to provide family members of the persons with Autism Spectrum Disorder with support, education, healthcare, and assistance services. Section 3.- Definitions. For purposes of this Act, the following terms shall have the meaning stated below: a) Autism Neurodevelopmental disorder, as defined in the Diagnostic and Statistical Manual of Mental Disorders (Fourth Edition) TR or current edition, with a typical onset in the first three (3) years of life. Persons with autism show symptoms related to the qualitative impairment in social interactions or patterns, qualitative impairments in communication, and repetitive and stereotyped patterns of behavior. It causes severe and significant impairment in cognitive development,
7 thought process, sensations, language, and the ability to develop social relationships, all of which continue to manifest and worsen throughout life. Persons who have this disorder have learning, attention, development and social interaction, sensorial, and emotional difficulties. Moreover, they have stereotyped and unusual ways to react to social interactions. b) Assessment Process designed to identify children who are at risk of developing or have a delay in their development or an impairment. Any person who has been so identified should undergo specific tests and evaluations leading to an accurate diagnosis of the disorder. c) Autism Spectrum Disorder Neurodevelopmental disorders that may have an onset in the first three (3) years of life and persists throughout life. Clinical patterns of these disorders vary according to the degree of severity. Autism Disorder, Rett s Disorder, Childhood Disintegrative Disorder, Asperger s Disorder, and Pervasive Developmental Disorder are included within Autism Spectrum Disorders, according to diagnostic criteria. d) Care Coordination Assistance and/or support provided for persons with Autism Spectrum Disorders and their families, including planning, coordination, location, access availability, and monitoring of services and assistance as are necessary to improve the quality of life and achieve an optimum level of participation in the community. e) Coverage Services included in the healthcare insurance coverage. f) Ludic Sports Movement and sensorial activities performed during free time, suitable for all persons, according to their physical condition and age, that are performed in accordance with his/her developmental stage. g) DSM Diagnostic and Statistical Manual of Mental Disorders Diagnostic manual and guidelines used by healthcare professionals to diagnose autism spectrum disorders as defined in its latest edition.
8 h) Asperger s Disorder A disorder similar to Autistic Disorder. Persons with this disorder manifest a normal intelligence and show no significant delay in language and cognitive development; however, they have difficulty with social interactions, use idiosyncratic language, have difficulty understanding symbolic or abstract language, humor or jokes, and have eccentric behavior. i) Rett s Disorder Genetic disorder that, after an apparently normal development, has an onset between age 5 and 48 months manifesting severely impaired expressive and receptive language development with severe psychomotor retardation, loss of social engagement early in the course of the disorder and Pervasive Developmental Disorder, Not Otherwise Specified. It is characterized by stereotyped movements. j) Childhood Disintegrative Disorder Disorder that manifests before age 10, after an apparently normal development. It is characterized by the loss of communication and social interaction skills, stereotyped movements, and compulsive behavior. k) Pervasive Developmental Disorder, Not Otherwise Specified Disorder diagnosed when the symptomatology does not meet the minimum or specific criteria for Autism Spectrum Disorder, but some typical traits or characteristics are present. l) Education Process geared toward facilitating and broadening the continuous and multidimensional development of human beings, for the purpose of improving the potential and capabilities of persons to the fullest, so that they are able to live in harmony within their environment. In terms of education, this public policy seeks to provide persons with Autism Spectrum Disorder with the proper environment and quality of education that takes into account their strengths and
9 works toward satisfying their needs as part of a process whereby the functional capabilities of such persons are developed according to their different learning levels and styles. m) Interdisciplinary Team Group of service providers composed of three (3) or more health professionals from different fields including, but not limited to: one (1) psychiatrist, one (1) clinical psychologist, and one (1) physician, together with therapeutic service providers, to wit: occupational therapists, physical therapists, speech-language pathologists, case managers, and teachers, who provide broad healthcare services based on the best practices of diagnosis and treatment of the different functions and capabilities of human beings; and other professionals with jurisdiction over Autism Spectrum Disorder, as well as the person with Autism Spectrum Disorder and his/her family. The team stands out for its consensus work which is characterized, among other things, by the interaction of all professionals with respect to interventions and case discussion, promoting full knowledge of the contributions made by each profession or discipline, as well as the best practices of each field for the benefit of patients and their families. The constitution and leadership of this team shall be subject to the scenario or rendered service, as well as the clinical and social needs of the person. n) Medical Home Team-based model of delivering healthcare services by forming partnerships between the primary physician and other professionals and the patient s family in order to provide healthcare services. It is originated in a primary care facility and offers family-centered services characterized by continuous, comprehensive, coordinated, accessible, sensible, and culturally sensitive.
10 o) Medically Necessary Any care, treatment, intervention, service, or issue that shall or is reasonably expected to produce any of the following results: prevent the development of an illness, disease, injury, disorder, or disability; reduce or improve physical, mental, and developmental effects of an illness, disease, injury, disorder, or disability; manage a critical illness; help to achieve or maintain maximum functionality to perform daily activities. p) Healthcare Insurance Any healthcare policy, contract, agreement, person, or company that provides healthcare coverage to third-parties, whether through an individual or group policy. q) Healthcare Service Provider Any physician, hospital, primary care centers, diagnostic and treatment centers, dentists, laboratories, pharmacies, emergency medical and pre-hospitalization services, medical equipment provider, or any other person authorized in Puerto Rico to provide healthcare services. r) Secretary The Secretary of the Department of Health of Puerto Rico. s) Transition Group of coordinated activities for a person with an Autism Spectrum Disorder, which are geared to attaining goals, and promote the progress throughout each of the different stages. It begins from childhood at preschool age and carries on through after-school activities, including postsecondary education, vocational training, integrated employment (including sustained employment), adult education, independent life services, and community participation. This group of coordinated activities is based on the individual needs of persons with an Autism Spectrum Disorder taking into account the strengths, preferences and interests, community resources, job-related development, and other objectives for after-school life and the development of new skills for everyday life.
11 Section 4.- Department of Health Responsibilities. a) Through its Pediatric Centers, which provide services to children and youth with special needs under the age of 21 years, within the Early Intervention Service System, the Department shall be responsible for the identification, diagnostic, intervention, and treatment of minors with an Autism Spectrum Disorder, since their birth up until they reach the age of twenty-one (21) years. For such purposes, the Department of Health shall have an interdisciplinary team composed of three (3) or more health professionals from different fields including, but not limited to: one psychiatrist or clinical psychologist, and one physician, along with therapeutic service providers, to wit: occupational therapists, physical therapists, speech-language pathologists, and case managers, among others. These shall use evidence-based intervention practices. Each case shall be referred and managed by a Case Manager who shall be responsible for coordinating all the services and referrals of minors with an Autism Spectrum Disorder. b) The Department shall develop, in coordination with other agencies, protocols for the reevaluation and follow-up of persons with an Autism Spectrum Disorder that are tailored to the needs present in each stage of development. The Case Manager shall be responsible for coordinating with the Department of Education and the Vocational Rehabilitation Administration, in accordance with the corresponding stage, the transition process, as defined in this Act, to guarantee the continuity of services provided to persons with an Autism Spectrum Disorder. c) The Department shall create a Registry of Persons with Autism Spectrum Disorder, which shall include a Monitoring System that includes data on the prevalence of Autism Spectrum Disorder. Every service provider, agency, or instrumentality of the Government of Puerto Rico offering services to persons with
12 an Autism Spectrum Disorder shall report data in connection with said population. The Department of Health shall submit to the Legislative Assembly a report about this registry on March of every year. d) The Department of Health, through the Office of Regulation and Certification of Healthcare Professionals, shall ensure that Healthcare Professionals and Health Service Organizations that provide services to the Autism Spectrum Disorder population meet the requirements of this Act as a condition for license renewal. e) The Department shall establish in each Pediatric Center an Autism Spectrum Disorder Information Center that provides parents and professionals with access to pertinent information, including the Registry of Healthcare Professionals and Healthcare Professionals certified by the Department of Health. Likewise, it is hereby authorized to enter into collaborative agreements with healthcare service organizations to join efforts to develop secondary and tertiary education components in said entities. f) The Department shall develop a mechanism to monitor the services rendered by providers as well as the quality thereof. Moreover, it shall develop a tool to evaluate the quality of the services rendered by providers, thus providing for the analysis of the levels of user satisfaction. The results furnished by this mechanism shall be taken into account as part of the conditions for license renewal. g) The Department shall create a grievance and provisional remedy system based on the recommendations made by the Steering Committee, which shall establish a reasonable waiting time to conduct evaluations and begin therapies or treatments so that the parents of persons with an Autism Spectrum Disorder have the resources to claim services in the event of noncompliance with the established timetable.
13 h) The Department shall create a training and support program for the families of persons with Autism Spectrum Disorder, which offers conferences, workshops, and training about the Autism Spectrum Disorder, as well as behavioral, medical, and therapeutic interventions, and psychological support, among others. Section 5.- Early Detection and Diagnosis. Every healthcare provider that offers services to the pediatrics population, in general, shall use the Guidelines of the American Academy of Pediatrics to identify potential cases that may eventually be confirmed as Autism Spectrum Disorder. In the case of professionals who offer psychological and psychiatricrelated services to the Autism Spectrum Disorder population, said providers shall use the diagnostic criteria established in the latest edition of the Diagnostic and Statistical Manual of Mental Disorders. Professionals shall use instruments to carry out assessment, evaluation, and diagnostic procedures applicable to the Autism Spectrum Disorder population. Professionals shall be required to implement an Evaluation Protocol in accordance with the discipline and guidelines prescribed therefor by the Department of Health, which shall include, at least, the following requirements in medical and social areas: a. Medical and family record b. Interdisciplinary team evaluation Case Managers of Pediatrics Centers shall be responsible for making referrals to qualified medical specialists, as provided by the interdisciplinary team of the Pediatrics Center, so that persons with an Autism Spectrum Disorder may receive complete services, according to the development stage, provided by specialists in the areas where impairment or delay is suspected for the purpose of complying with the public policy set forth in this Act.
14 The International Classification of Functioning, Disability and Health (ICF) of the World Health Organization, among other instruments, shall be used for functional status assessment of persons with an Autism Spectrum Disorder. The ICF is used for goal setting and treatment planning and monitoring, as well as outcome measurement. It is a classification of health and health-related domains. These domains are classified, according to a biological, individual, and social perspective, into two components: body functions and body structures, and activities and participation. The ICF also takes into account environmental factors. Section 6.- Types of Intervention. Interventions with the population of persons with Autism Spectrum Disorders shall be made by providers certified through the Registry of Healthcare Professionals and/or Healthcare Professionals, and shall integrate the following strategies: a) Behavior Functional behavioral assessment (FBA) is a scientific procedure conducted when the behavior of a person affects his/her optimum function within the everyday environment. The FBA enables the development of an individualized intervention plan that takes into account the person within the environment where this type of challenging behavior is manifested. b) Sensory Processing Any sensory processing assessment shall be conducted by an occupational therapist knowledgeable in sensory processing and movement disorders. In the case of oral motor disorders that affect feeding and speech processes, the assessment shall be conducted by a physical or occupational therapist licensed and trained to conduct said assessment. Such assessment shall include recommendations based on the outcome of the evaluation process in this area, in light of the findings for the purpose of developing treatment that addresses
15 the deficiencies in the individual s abilities to process sensory and movement information. c) Communication Licensed Speech-language Pathologist with knowledge or training in Autism Spectrum Disorder shall conduct the assessment of communication functions, as well as strengths and areas of need. Effective alternatives shall be provided for the development of verbal and nonverbal communication skills. d) Social Skills The goal of making an intervention for the development of social skills is focused on enabling the person to understand and act according to their social setting, ensuring their participation in inclusive environments. The objectives of the intervention are: to initiate a social behavior, minimize the stereotyped behavior, encourage perseverance, and use of an array of flexible and varied responses and the management of new and established skills, among others. These formal evaluations of social development of persons with Autism Spectrum Disorders shall be made for the purpose of identifying the areas of need. Said evaluation shall be made by a licensed clinical psychologist or Social Worker with knowledge in Autism Spectrum Disorders. The intervention for the development of social skills shall be implemented by a clinical psychologist or Social Worker licensed and trained to work with persons with Autism Spectrum Disorders. e) Academic and Preparatory Area Academic skills include the development of reading, writing, and mathematics curriculum skills, in accordance with the standards established by the Department of Education. The preparatory skills include basic concepts that serve as the basis for the development of academic skills.
16 The education of persons with Autism Spectrum Disorders entails not only academic learning but also the promotion of skills and knowledge that enable the development of personal independence and responsibility. Persons diagnosed with Autism Spectrum Disorders shall be referred to a preparatory preschool academic evaluation to determine their functioning level. Preschool-aged Minors: These minors shall be evaluated taking into account the learning requirements. The developed skills profiled coupled with the needs and strengths, in accordance with the evaluation conducted by the expert, shall determine the proper academic placement, as well as the support services that the minor needs. The emphasis shall be the development of the areas of need as established in the evaluations conducted. An Individualized Educational Plan (IEP), as provided in the Individuals with Disabilities Act (IDEA), Public Law 108-446 of 2004, as amended. School-aged Minors: These minors shall be evaluated through formal tests that take into account their language impairments, such as nonverbal tests, for the purposes of identifying the areas of need and be able to devise a PEI to work with said areas. Youths diagnosed with Autism Spectrum Disorders shall be evaluated to identify their functioning level in connection with employment. The purpose of the evaluation is to devise a plan for development and adjustment to independent life, if the case so warrants. In more severe cases, an evaluation shall be conducted to determine the need or assistance required by the youth or his/her family. After an analysis of the academic functionality of the individual, it is important to develop an independent living program that includes the skills developed at school
17 level, adapted to the needs of said individual and focused on the weakest areas in order to reinforce their abilities. f) Medical Home-related Aspects In the case of children and adolescents with Autism Spectrum Disorder, the medical home through the Pediatric Center and the primary physician of the child and his/her family shall serve as the care coordination center to work with community providers and the agencies to ensure that these persons have access to the services they need and to which they are eligible. The primary physician or pediatrician shall monitor the development and conduct an assessment to identify children who have developmental delays or disabilities, including Autism Spectrum Disorders. Once the presence of autism indicators or the diagnosis is confirmed, the primary physician and the pediatrician shall make referrals for early intervention or treatment. This model requires care coordination between systems, namely, health, education, daycare centers, Head Start centers, and medical specialists, as well as community-based organizations that provide families with support to access the necessary services. Section 7.- Education. It is hereby declared as public policy that the Government of Puerto Rico is responsible for developing and implementing, directly or in conjunction with other public or private entities, all the mechanisms available to ensure that: a) Families, communities, care and development programs, and public schools are able to identify and develop learning experiences and opportunities for persons with Autism Spectrum Disorders; b) Educational programs have curriculum that takes into account the special needs of persons with Autism Spectrum Disorders, including less restrictive school placement alternatives and related services, in accordance with the
18 provisions of current federal and state legislation; student one-on-one aide services are available if warranted; individualized education when necessary is available, as well as reasonable accommodation into smaller groups, thus allowing the child s education. The individualized educational plan shall be tailored to the particular needs of each student with Autism Spectrum Disorder; c) Programs are developed to ensure the wellbeing, safety, and health of persons with Autism Spectrum Disorders by creating adequate environments, such as safe areas, good interpersonal relations, and infirmary services, among others; d) The development of spoken language is encouraged, as well as the opportunities to foster reading and writing through different media, including information technologies and resources, both in public places and at schools; e) The care, development, and education of persons with an Autism Spectrum Disorder is provided by qualified and licensed personnel, which has been trained to work with preschool children or has completed continuing education therefor, in accordance with the best established practices; f) The care, development, and education programs for persons with an Autism Spectrum Disorder that operate with public or private funds use the adequate practices in accordance with the particular needs and the level of development of persons with Autism Spectrum Disorder, and that meet quality standards are evidence-based, practice-based interventions, or validated for said population in Puerto Rico; g) The care, development, and education programs for persons with an Autism Spectrum Disorder have a curriculum that takes into account the dimensions of the learning development and areas, and provides the proper space and sufficient time for exploration, discovery, and interaction, as well as critical and reflective dialogue. School environment shall provide recreational activities
19 and sports, as well as drawing, art, dance, and music lessons, among others, for the full development of this population; h) The care, development, and education programs for persons with an Autism Spectrum Disorder have an evaluation component including the procedures and tools that are adequate for the level of development of persons with an Autism Spectrum Disorder and that deals with developmental and learning aspects; i) The care, development, and education programs for persons with an Autism Spectrum Disorder are based on respect of individuality, differences, needs, and strengths of those who compose such population; j) Persons with an Autism Spectrum Disorder receive continuous care and education services focused on the development of independent life skills and employment-related skills as a goal to achieve independence and financial selfsufficiency as they reach adulthood; and k) The Department of Education shall be responsible, in conjunction with the Case Manager of the Department of Health, for offering intervention services to the Autism Spectrum Disorder population, between ages 3 and 21 years. Such services shall include, but not be limited to, the necessary therapy services for development and learning, speech and language, psychological, physical, visual, and hearing occupational therapy. Intervention services shall be consistent with those provided for in Section 6 of this Act. Section 8.- Transition Process. Persons with an Autism Spectrum Disorder are hereby guaranteed that the Department of Health, in conjunction with the Case Manager, through the Programa Avanzando Juntos (Moving Forward Together Program) or a similar program, shall devise along with their families a Transition Plan for infants and toddlers: from birth to age 36 months to transition to preschool age services; from preschool-age to school-age services in the Department of Education, through
20 Special Education; and from school-age to services geared to the acquisition of skills that promote independent living and employment by exposing them to experience real situations of everyday life and at the workplace in coordination with other Government agencies. Transition processes shall be implemented as provided in the IEP and identified within the pertinent areas included in the IEP of each student, during the following stages: a) From the early Intervention System to the preschool-age system; b) From the preschool-age system to school-age system; and c) From the school-age system to postsecondary or university education, the workforce or independent living. To implement the transition process there shall be used inter and transdisciplinary models aimed at encouraging the functionality of persons with Autism Spectrum Disorder. Said models shall pursue the following objectives: 1. To guarantee the participation of persons with an Autism Spectrum Disorder in the processes required by law. 2. To provide training to Special Education teachers on the design and/or creation of the functional objectives and goals in the IEP for the Autism Spectrum Disorder population. 3. To use, within the vocational assessment process, an ecological approach in order to strengthen the skills that will enable this population to be employed. 4. To guarantee that the population will have real job experiences inside and outside of the school setting in order to strengthen the skills that will ultimately lead them achieve a job-related goal, as established in the IEP. 5. To develop independent living and financial self-sufficiency skills.
21 6. To develop community projects geared to train and employ youths and adults with Autism Spectrum Disorder. 7. To develop university programs whose curricula includes Autism Spectrum Disorder-related subjects to prepare the academic environment and the faculty prior to the admission of youths and adults with an Autism Spectrum Disorder. Section 9.- Adult and Community Life. The following programs or services shall be offered to adults with Autism Spectrum Disorder: a. Housing The Department of Housing of Puerto Rico shall take steps as are necessary, observing state and federal laws and regulations that govern the availability of housing, so that persons with Autism Spectrum Disorder, or the family members with whom they live, are provided with affordable housing. It shall foster the creation of assisted living programs for persons with Autism Spectrum Disorder who can live independently or semi-independently, and of housing centers with assistance for those who need ongoing supervision and support. The development of programs and initiatives, through multi-sector collaboration, shall be promoted for the purpose of enabling persons with Autism Spectrum Disorder to develop, improve, and maintain the social and job-related skills and competencies they need to live in the community of their choosing with the support they require, according to the best practices used in other projects and initiatives which have proven successful in other similar contexts and settings.
22 b. Community The Government of Puerto Rico, through any of the entities that provide services to the community and to the extent resources allow, shall implement initiatives geared toward integrating persons with Autism Spectrum Disorder into the community. Likewise, it may require the collaboration of nonprofit or community-based entities to include the Autism Spectrum Disorder population within their services offering, without impairing the purposes of these organizations. c. Sports and Recreation The Sports and Recreation Department, together with a multi-sector collaboration, shall offer opportunities to participate in its sports and recreation programs with the necessary assistance and accommodations, to wit: summer and Christmas camps, social-skills workshops, sports clinics, special competitions and physical education adapted for persons with Autism Spectrum Disorder. It is hereby declared as public policy that the Government of Puerto Rico shall be responsible for creating and implementing, directly or through public or private entities, any mechanisms available to: i. Incorporate the proper strategies for this population when persons or entities responsible for the sports and recreation aspects are developing the curricula, plans, or programs; ii. Allow persons with Autism Spectrum Disorder to enjoy open spaces, passive and active recreational experiences, as well as access to and contact with nature within family and community-oriented settings for their care, development, and education. iii. Guarantee access to recreational, educational, and wellness experiences according to their capabilities and interests.
23 iv. Promote, develop, and support games and recreation, as well as physical activity and ludic sports programs to contribute to the physical wellbeing of the population with Autism and their integration to the community; v. Raise awareness of the importance of playing in the development of children through the caregiver and teacher education programs; vi. Strengthen the development of sports and recreation professionals through courses specialized in Autism Spectrum Disorder-related subjects that addresses the characteristics and needs of this population; and vii. Comply with the current standards thus protecting persons with Autism Spectrum Disorder while carrying out sports and recreational activities by employing safe and adequate practices. d. Employment The Department of Labor and Human Resources shall provide persons with Autism Spectrum Disorder with training and orientation in order to integrate and obtain a job and remain employed, thus achieving financial independence and improving their professional development. For such reason, it shall actively and effectively use the resources and specialized knowledge of the Rehabilitation Services Administration and other components of the department. i. Develop a wage subsidy program for employers that hire persons with an Autism Spectrum Disorder; ii. Guarantee the participation of youths with an Autism Spectrum Disorder in summer job programs as part of the transition process; iii. Create a talent bank of youths and persons with Autism Spectrum Disorder who are properly trained and ready to work so they can be promoted among employers for the purpose of being hired; and
24 iv. Offer specialized training to employers to raise awareness of the importance of integrating the population of persons with Autism Spectrum Disorder in the workforce. Section 10.- Family Support Program. The Administration for Children and Families of the Department of the Family shall create a program to be known as the Persons with Autism Spectrum Disorder Family Support Program that shall include: a) Orientation b) Follow-up c) Intervention d) Empowerment e) Relief Programs f) Long-term Care Programs (Provided by personnel with medical knowledge or health-related area specialist). g) Housekeeper h) Psychological Support i) Day Care Programs Section 11.- Professional Development. The development of professionals and service providers for the Autism Spectrum Disorder population shall serve to support the design and implementation of quality and evidence-based services. Autism-related training shall be a requirement for all service providers who interact with the Autism Spectrum Disorder population and their families. These professionals should be able to recognize the core characteristics of the disorders and where to refer persons with these disorders. Primary physicians, occupational therapists, physical therapists, teachers, psychologists, speech and language pathologists, neurologists, developmental pediatricians, and others must be trained to assess, evaluate,
25 identify, and intervene with the Autism Spectrum Disorder population and make the corresponding referrals. Other professionals that may interact with this population, including security-related and other rapid response personnel must receive training annually on how to evaluate and interact with the Autism Spectrum Disorder population. Academic programs shall have both trans-disciplinary and disciplinary competencies. Students and professionals who render services to this population shall receive training for which they shall obtain a certification or credit hours. Said training shall consist of assessing the needs of persons with an Autism Spectrum Disorder and their families, as well as of the services they require. Moreover, Universities offering graduate certificate programs shall issue a certificate attesting to the education of students in said field upon meeting the academic requirements. The Examining Boards of Healthcare Professionals that work with Autism Spectrum Disorder, which boards are attached to the Department of Health shall ensure the competence of said professionals. Said professionals shall have trans-disciplinary competencies, thus, they shall receive training therefor in order to be certified. Such training shall consist of assessing the needs of and services required by the population. The Puerto Rico Surgeons Association shall conduct an orientation campaign in connection with Autism Spectrum Disorder aimed at healthcare professionals who render services to the Autism Spectrum Disorder population. The Medical Discipline and Licensure Board of Puerto Rico shall establish the continuing education requirements with regard to Autism Spectrum Disorder.
26 Section 12.- Academic Education. Universities and postsecondary institutions that award bachelor s and master s degrees in psychology, education, and social work shall offer their students at least nine (9) credit-hours related to Autism Spectrum Disorder. Universities offering said education shall issue a certificate attesting to the preparation of students in said field upon meeting the academic requirements. Any practicum course offered by the university or postsecondary institution shall include rendering services to low-income Autism Spectrum Disorder population. The University of Puerto Rico and other private universities that provide education to healthcare professionals shall be required to revise, evaluate, and modify college curricula, so that these include the aforementioned professional competencies. Likewise, such universities shall make institutional modifications as are necessary to develop or amend any regulations, circular letter, or administrative order to meet such requirement. Section 13.- Continuing Education. The University of Puerto Rico, in conjunction with the Department of Education, as well as private entities and institutions that regulate the professionals who render services to the Autism population shall have to structure and develop courses and seminars about Autism Spectrum Disorder, the best practices to render services to this population, including diagnosis, proper management and intervention, and treatment. It is hereby provided that every clinical, educational, rehabilitation counseling, and administrative professional or specialist who provide services or treatment or conducts procedures, including primary physicians and pediatricians,
27 to the Autism Spectrum Disorder population shall complete, as part of their required continuing education credits, at least fifteen (15) credit-hours every three (3) years in connection with Autism. Failure to meet said requirements shall result in the suspension or cancellation of any license to operate or to practice. Special education teachers whose main function is to regularly and directly provide care for the Autism Spectrum Disorder population shall be required to complete, as part of their required continuing education credits, at least twenty-four (24) credit-hours of continuing education every two (2) years, to update their knowledge, skills, and educational emphasis with regard to management, and proper care and education of the Autism population. A maximum fee of twenty-five dollars ($25) per credit-hour is hereby imposed, fifty percent (50%) of which shall be used to pay for the personnel who shall teach said course or seminar, and the remaining portion shall be transferred to the Department of the Treasury, which shall be responsible for collecting said moneys to defray any expenses that may arise in connection with the implementation of this Act. Section 14.- Healthcare Service Coverage. Autism Spectrum Disorder is hereby recognized as a health disorder. Autism Spectrum Disorder is a neurodevelopmental disorder that, in addition to social interaction and communication impairments caused by neurological problems, entails metabolic, immunological, and gastrointestinal conditions. Moreover, it requires speech and language, psychological, occupational, and physical therapy, as well as the proper medication and tests to diagnose and treat the same. The Puerto Rico Health Insurance Administration (ASES, Spanish acronym) shall establish for any eligible beneficiaries of the Government of Puerto Rico Health Insurance Plan, as part of the minimum coverage and benefits provided in Section VI of Act No. 72-1993, as amended, known as the Puerto Rico Health Insurance
28 Administration Act, such medical treatments that have been scientifically proven effective and are recommended for the Autism Spectrum Disorder population, according to the available resources and the specific needs of patients. ASES shall ensure that contracted health insurance companies include within their coverage, services geared to the diagnosis and treatment of persons with Autism Spectrum Disorder, namely: genetics, neurology, immunology, gastroenterology, and nutrition, as well as speech and language, psychological, occupational, and physical therapy including medical appointments and any medically recommended tests. Furthermore, the Administration shall advise families of persons with Autism Spectrum Disorder on learning about the proper intervention strategies. ASES shall have thirty (30) days after the Autism diagnosis to refer a patient to the Pediatric Center of the Region where said patient or his/her family or guardian lives so that said patient can receive specialized treatment as warranted by the condition. Section 15.- Private Health Insurance Plans. Health insurance plans, whether through individual or group coverage, insurance company, contract or agreement to provide healthcare services in Puerto Rico entered into with companies, individuals or local or foreign entities, shall be required to offer coverage for Autism treatment. Said coverage shall include, but not be limited to, genetics, neurology, immunology, gastroenterology, and nutrition, as well as speech and language, psychological, occupational, and physical therapy including medical appointments and any medically recommended tests.
29 Said coverage shall not establish patient age limitations. It shall neither be subject to limitation with regard to benefits and a maximum number of healthcare professional appointments, after care needs have been established by a licensed physician. The coverage herein established may be subject to the same copayments and deductibles to which other similar services are subject. No insurer, benefit provider, benefit administrator, person, or institution may deny or refuse to provide covered services based on the effect that the inclusion of said services may have on the Autism coverage; or refuse to renew, issue or restrict or cancel the Autism coverage because the covered person or his/he dependents are diagnosed with Autism or because they availed themselves of the benefits provided in this Act. Any insurer shall be required to submit quarterly reports to the Department of Health on the number of insured persons who have been diagnosed with Autism Spectrum Disorder. The cancellation of an existing healthcare insurance policy by reason of a diagnosis of Autism Spectrum Disorder of one of the beneficiaries when the illness was unknown at the time said policy was obtained is hereby prohibited. Section 16.- Safety. Safety comprises the safeguards and efforts made to guarantee that persons with Autism Spectrum Disorder have the opportunities they need to achieve their full physical, mental, and emotional development thus protecting their interests and wellfare. It is hereby declared as public policy that the Government of Puerto Rico shall be responsible for creating and implementing, directly or through other public or private entities, for the Autism Spectrum Disorder population, any available mechanisms so that: