translated from Spanish: a trip to check-out

Lack of support for caregivers, shortages of medicines, essential paperwork, and lack of accessible information and health facilities
Margaritas Hooks is a fighting woman. For 16 years it has been the voice, legs, arms of Carlos, his son with multiple disabilities and refractory epilepsy.
She was the one who pushed hard and with compelling reasons the amparo before the Supreme Court of Justice of the Nation to obtain medical cannabis for Charles’ treatment.
A subject that passed to the Senate and which was entangled in a long discussion where medical, pharmaceutical or palliative use was mixed on the one hand with the legalization of the playful use of marijuana. To be completed soon, the senators requested an extension to return to the issue in the next legislative period and at IMSS asked for an extension to give him what the judiciary authorized him for lack of stock. This whole issue was paused by the pandemic.
Read: How do people with disabilities live the COVID-19 contingency? They tell it
Its history, so personal but, at the same time as representative of those living with a disability or with a person with disabilities, serves to understand how their situation becomes more complex, bureaucratic and dangerous in the midst of a pandemic as we are all immersed in.
“These last four weeks, the inequalities we are subjected to have become so sharp that our lives are gone in them,” Says Hookas. In his blog he gave an extensive analysis of what the authorities did not take into account when announcing the start of the health contingency by COVID-19.
The need to add primary caregivers (parents or adult in charge) of pcd as one of the groups to protect work and who enjoy justified non-attendance. That is, you can take care of him at home without losing his job or his salary. She did it this week, thanks to a court-up, an ISSSTE employee who has a child with autism and asthma to care for. Here’s the note.” Workers with children whose day care or schools are closed have been discharged, and someone has to care for them, not specific disability matters. This is already legislated in Argentina, Peru, in the United States and not here,” adds Margarita.There is a project in the Chamber of Deputies (#DerechoAlCuidadoDigno and #TiempoPropio) but far from priorities by these dates.
The essential procedures that remained pending, a bureaucracy full of gears that is slowing down step by step the next procedure. One of them is the “permanent disability” process that is needed to continue receiving medicines and treatments.
The extension of health services, in shifts to address other ailments, which is now co-opted by the health crisis.
Lack of accessible information for people with different disabilities.
Lack of adequate and personal equipment prepared in units published by the SSA that have supposed capacity or preparation to receive pcd.
The shortage of medicines for chronic conditions (such as epilepsy).
This last point is one of the most serious. “Not having medicines causes a detachment to treatments that can lead to an emergency in a hospital, which is already saturated,” Garfias adds. Not only that: people with disabilities are among the groups at high risk of contagion: reaching a neurological emergency can end up in a COVID -19 contagion.
On our page we receive many complaints in this regard, including from psychotropic medicines for patients from the Integral Center for Mental Health (Cisame), which is also closed.
On the Facebook wall of the organization Extraordinary Families and Challenges (to which Margarita Garfias belongs) also accumulates orders for medicines for children and adults with disabilities.
“This problem is serious for all chronic diseases because there is also no insulin endowment for people with type 1 diabetes; the reconfiguration of hospitals proposed by the Ministry of Health (SSA) changed the places where patients routinely turn to their dosages and this leads them to move around the city (when they shouldn’t) and be at risk of contagion because they are a risk group,” said health analyst Xavier Tello.
Two weeks before the health emergency was declared, parents of children with cancer also demanded the undoing of chemotherapy and women with breast cancer were protesting at Palacio Nacional over the disappearance of Fucam/People’s Insurance.
“The number of missing for several months in 2019 was 60% of the public system hospital catalog due to the change in format in sector purchases. At the end of the year the following acquisitions were some direct awards and other tenders, but there were still 35% missing medicines,” Tello adds and tops with a stoning phrase, “people with disabilities or diabetes, which is perceived as non-contagious, so they are not a health problem therefore they are not in the spotlight, they are not on the radar during an epidemic of this magnitude”.
Find out: Mental Health Act That Violates Disability Rights Advances in Senate
There are many details that were not taken into account in this contingency and another is that of the care of people with disabilities who have already acquired the virus and need hospitalization.
We have read many cases in recent days of people who roamed from hospital to hospital in search of an available bed, even though health authorities say there are still many places and the application of the CdMX so ensures so does.
This problem could be solved (at least in the CdMX where there is the highest volume of contagion) just by uploading some information to the emergency system. There is a unit called “emergency services regulation,” where ambulance operators call to tell you where to take patients based on case or ailment. Wouldn’t it be worth going up as one of the options for finding hospitalization for patients with coronavirus? Well, you still don’t contemplate it.
“I got tired of being invisible, and seeing how the “system” violates my rights and those of my son, every one who ignores us, discriminates against us,” says Margarita Hookas and coming from her mouth this claim is, again, that of thousands of parents in the same situation.
Read more stories like this in me too.
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Original source in Spanish

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