In 1970, the U.S. Congress passes P.L. 517, the first governmental effort to address the needs of a group of people with disabilities that was known as developmental disabilities. This law had the purpose of amending the 1963 law that only mentioned people with mental retardation. As of 1970, only the conditions of mental retardation, cerebral palsy, epilepsy and other neurological conditions that manifested themselves before the person was 18 years old, and that resulted in a substantial limitation to the person were considered as a developmental disability. This new bill required every state and territory to designate a Council and authorized the use of the funds assigned to the Council for planning, services, and construction of facilities for the DD population. It also required that the state plan should describe the quality and the extent of the services and how these funds would be assigned to augment and not duplicate the services already available. This law also assigned funds to higher education institutions for the development of interdisciplinary trainings in order to educate service providers with the skills needed to serve the DD population. These centers at this time were known as the University Affiliate Program (UAP). In 1971, Puerto Rico’s Health Department is designated as the state agency to administer the funds assigned under this new law. Dr. Ana Navarro, was appointed the first chairperson of Puerto Rico’s State Council.
In 1975, the law was reauthorized an changed is name to P.L. 94-103. This new law required the establishment of protection and advocacy systems in each jurisdiction in order to receive the allotted funds for the state or territory. In Puerto Rico, the state agency assigned to house this program was the Department of Consumers Affairs or DACO as it is known in Spanish. The program is called the Protection and Advocacy for Developmental Disabilities or PADD. In 1985, when the Office of the Ombudsman for Persons with Disabilities (OPPI) is established, this program is transferred to this new agency. P.L. 94-103 also establishes the Bill of Rights of persons with developmental disabilities, among which are the right to receive appropriate treatment and to receive services designed to maximize the potential of the individual with developmental disabilities. This law also assigns additional funds in order to establish model projects, outreach, and other activities geared toward the improvement of services provided to the DD population. Another important aspect of this new law is that the definition of developmental disabilities is amended to include autism, dyslexia if these conditions are the result of other conditions previously included in the law. The law also clarifies, that the UAP’s should have demonstrative service programs, and provide education, and interdisciplinary training to the service providers of the DD population. It also authorized the extension of these services to higher education satellite centers in areas where the services are not provided. Another important amendment is that all projects funded by the Council had to have a written habilitation plan with immediate, intermediate, and long term goals in the provision of services.
In 1978, the law is amended again in order to update the definition of developmental disabilities by eliminating specific conditions and defining developmental disabilities base on functional limitations. Another amended established the four priority areas to provide services which were: case management, child development, alterative living arrangements in the communities and non-vocational and social development. In Puerto Rico, the Council was chaired by Dr. José Martínez Pacheco from the Vocational Rehabilitation Program of the Social Services Department from 1975 to 1980.
In 1980, for the first time a parent of a person with DD becomes the chairperson of the State Council. Mrs. Diana Bird de Rodríguez a mother of a child with severe mental retardation chairs the Council for the next 3 years.
In 1984, the law is amended to state the purpose of the law which specifies that the authorized programs by the law are to guarantee the development of the maximum potential of the individuals with developmental disabilities by acquiring greater independence, productivity and integration to their communities. Among other amendments of the law, are the inclusion of employment as a priority area and the authorization of services to promote activities directed toward the prevention of developmental disabilities. It also establishes a requirement that representatives from the Vocational Rehabilitation program, the Special Education program, Title XIX of the Social Security, the P&A system, higher education institutions, and the UAP’s have to be appointed as Council members. The law also prohibits the re-designation of P&A systems unless there is a just cause and gives the P & A system the authorization to access the records of individuals with developmental disabilities who are state wards or have no designated tutor when there is a complaint against the institution providing him or her with services.
In 1987, the focus of the Council is changed from one that provides services or demonstrative projects to one that advocates for policy change, including the education of legislators and others that determine and implement public policy. These amendments recognize the essential role family and members of the community, including friends and neighbors, have in the strengthening of the lives of persons with developmental disabilities. These amendments also modify the requirements for assigning funds to residential institutions by emphasizing that individuals with developmental disabilities should be given the opportunity to make their own decisions to the extent of their abilities and should reside in homes and community developments where they can exercise their rights and responsibilities as citizens. The term case management is also reviewed, and the definitions for early intervention, family support services and technical assistance are added to the law. The amendments also establish new priorities as to evidencing new ways to maximize independence, productivity and integration in the communities of the DD population. Also, the amendments establish as new priorities research development and its analysis, data collection, and the development of policies and model processes in order to convey the findings to those in charge of public policy so new opportunities, improvement on existing services, and the necessary accommodations to the services to the general population be provided to the DD population.
During1990 and 1994, the independence of the P&A system of Puerto Rico and the DD Council is strengthened. The DD Council’s state agency is changed from the Department of Health to the Planning Board to provide it with a greater agility in processing contracts and other administrative needs. The amendments to the law during these years include the broadening of the purposes of Projects of National Significance (PNS) in order to include assistive living and quality of life. They also emphasize that the dignity of the individual, his or her personal preferences and cultural differences must be respected at all times during the offering of services. It also recognizes that the persons with developmental disabilities and their families are the ones to make the decisions as to the kind of services, supports and other types of assistance that they want or require. The amendments also require that the state councils have to promote activities that promote system change, capacity building and advocacy.
In 2000, the law is reauthorized and renamed as Public Law 106-402. The purpose of this reauthorization was to clarify and update the purposes and programs covered under the law in order to reflect the latest policies and implementations of systemic change, capacity building and advocacy. The reauthorization also emphasized the need for collaboration and coordination among the three programs funded under the law: the P&A, the UCEDD and the Council. It also increases the requirements of effectiveness in those programs that are funded through the Act, as well as increasing the flexibility as to the needs and priorities identified by the individual with DD, his or her family and other interested parties. The UAP officially changes its name from the UAP to the UCEDD.
Throughout this 40 year historical trek Puerto Rico’s Council on Developmental Disabilities has responded to the requirements established by law, promoting the development of projects that respond to the needs of the DD population. Over 100 different organizations have received economical support to serve this population in the best possible way, over 300 different grants have been approved in order to reach our goals and more than 25 million have been assigned by the Council members to guarantee a better life for the DD population
We will continue to work toward developing awareness of the rights and needs of the population we serve. We live with the hope that these rights will not require of a law to be implemented and that this population be served as they deserve. We hope that the citizens of this Island will feel indignant upon realizing the inequalities and discrimination that the DD population has to still struggle against, and come to see them as the humans they are, and the positive contributions they make to society every day.