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  • Writer's pictureThe San Juan Daily Star

PIP files bill to guarantee medical services for citizens with special needs

Puerto Rican Independence Party Sen. María de Lourdes Santiago

By John McPhaul

In order to urgently guarantee that people with functional diversity have access to dignified, opportune and continuous medical services, the Puerto Rican Independence Party (PIP) minority leader in the Senate, María de Lourdes Santiago, announced the filing of Senate Bill 982 on Monday.

“Unfortunately, the infrastructure of the Department of Health, as well as with many other aspects of the health system in Puerto Rico, does not take into account sufficient specific considerations toward people with special needs,” Santiago Negrón said at a press conference. “In Puerto Rico, the conditions that are required to stay in the waiting rooms, or to receive treatment in clinical settings, are often incompatible with the characteristics, and behaviors inherent to certain diagnoses or disorders. This reality generates a gap, sometimes insurmountable, between the families of people with functional diversity and the health services to which every human being is entitled. This, as we have highlighted, affects the quality of life and reduces the life expectancy for a particularly vulnerable population.”

The pro-independence legislator pointed out that, in the case of minors with functional diversity, particularly girls and boys with severe conditions, a lack of protocols and knowledge of many specialists to welcome and care for them –- some of which even deny the requested treatment because they do not know how to handle their special needs -- causes mothers and other relatives to end up wasting time and money invested in the process.

“The experience is becoming more complex every day because, even when female heads of households often drop out of the paid workforce to permanently care for their daughters and sons, they grow old and there is no support network to supplant their efforts,” Santiago Negrón said. “And all this is made even worse by the absurd bureaucracy imposed by the insurance companies, making it difficult for mothers to access specialized services.”

The measure filed by the PIP senator says that the other areas of need that require immediate attention in the clinical settings include the lack of sign language and information provided in braille; lack of access to prescription drugs as a result of restrictions imposed by health insurers; the sparse training specific to the chronic functional diversity received by the health professionals in their formal medical education; the desirability of developing interdisciplinary teams designed to coordinate treatments in an integrated way; and the need for home health services to be offered under health insurance coverage. Also included are the relevance of the use of technological resources to provide telemedicine services; the recognition of priority shifts in appointments for neurodiverse or diagnosed people to face-to-face treatment; the need to establish safeguards to avoid unlawful discriminatory treatment; and the provision of general anesthesia service to patients who, due to their age or functional diversity, are unable to tolerate pain or cooperate with the treatment, procedure or medical study, among other needs and insufficiencies.

“With the approval of this measure, we seek to recognize and respect the rights of people with functional diversity, mainly when they require medical-hospital procedures,” Santiago Negrón said. “It is essential that health professionals educate themselves so that they have a broad understanding of how best to serve and communicate with this population. There is also the need to extend additional protections and rights for people with functional diversity in their interaction with health service providers, health insurance organizations and government agencies that regulate or channel those services.”

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