Families delegate the “management of the future” of their disabled children to private foundations

Families delegate the “management of the future” of their disabled children to private foundations
Families delegate the “management of the future” of their disabled children to private foundations

At 62, Carmen has bought an electric scooter, a helmet, and has gotten on two wheels for the first time. Sunday is Dani’s day. The rest of the week, this young man with autism spectrum disorder and 82% disability, lives in a residential center. The whole family prepares the ritual of that day marked in red on the weekly calendar. This 23-year-old loves getting on his scooter. Now, so does his mother. Another thing that reassures Dani is knowing what he is going to do after going for a ride. suckers in Salceda de Caselas and before going for a ride on wheels in Monçao. A logical order of events that seems to calm his thoughts, like when he visits “María’s room”, as he calls his father’s house. María, his sister, is also there on Sundays. And although he is young, death is a thought that creeps into the atmosphere in his mother’s house. More so, since health problems that were previously seen as a distant evil are lurking. “What will happen when we are gone?” Carmen is clear: “I don’t want to burden my daughter with that legacy for the rest of her life,” she bets. She and Dani’s father agree: They will make a will with a clause that requests that the center where Dani resides be in charge of providing support measures when the rest of his family members are missing.. “Leave him as much as possible.” And, if necessary, that the guardianship passes to public administration. Something that, judging by his youth, would be the law of life. They are worried (and very much so) because Dani communicates with a limited vocabulary and tries clumsily to describe what hurts him.

Increasingly, families make wills with a clause – judges usually take them into account – or They turn to foundations and legal entities for guidance in managing the future of a child with a disability. They are also increasingly only children or families with few members. Few to whom to delegate lifelong responsibility. “Today, the survival of many disabled people from their parents is a reality, due to improved health care and other factors, and new forms of disability such as brain and spinal cord injuries from traffic accidents, Alzheimer’s and others, which make lifelong learning more difficult for many disabled people.” It is advisable that financial assistance to the disabled is not provided solely by the State or the family, but by the disabled person’s own assets, which will allow them to guarantee their future in anticipation of other sources.to cover the expenses that must be faced”, says one of the objectives of the Foundations that provide support measures to people with disabilities (previously known as Guardianship Foundations). FARO has confirmed through interviews with at least four of them that the demand –of information and support measures– va growing up, at the same time saturation in the public system is evident.

This is the case for many people with ASD, who have limited communication skills and sometimes suffer from disruptive behaviour. Their parents want to leave guardianship and support measures tied up. But the legal change that eliminated guardianship for adults opened up a new panorama at a social level. For example, a will cannot be made for a disabled person. “It can be contemplated in the parents’ last will and testament that it is their express wish who should assume support measures, or a protected estate,” explains the Medela Foundation.

In consulted associations they recognize the saturation of the public entity Galician Public Foundation for Support to the Exercise of Legal Capacity (FUNGA)constituted by the Xunta and dependent on the Ministry of Social Policy, which has under its guardianship more than three thousand adults incapacitated by court order, according to the data in its 2022 report (3,114). This would include people incapacitated to make decisions about their assets, bank accounts or medical authorizations by court order, due to dependency, but also to problems of dementia, or dependence on substances. Hardly three dozen workers They are responsible for everything related to the legal and social protection of those persons with modified capacity to act, as well as those who are involved in a judicial process to modify their capacity through the exercise of guardianship.

The Galician Foundation for people with intellectual disabilities Sálvora – a private initiative – also started its journey in Vigo in the nineties. It currently has 62 people from all over Galicia They are provided with support measures – and another 6 still pending judicial resolutions – in the exercise of their legal capacity in aspects related to their personal, economic-patrimonial and legal sphere, “respecting their rights, will, wishes and preferences”, they assure. These are in residential centres in Mos, Redondela, Vigo, Lugo, or at home and among them are young people with intellectual disabilities, three with ASD and others with Down Syndrome, to mention just some of the cases of people whose support measure – whether guardianship, curatorship or de facto custody – has been ordered by a judge. “Constant monitoring is carried out on the life plans of each supported person, in coordination with residential services, reference social services, families and any person who has a link with the disabled person”, explains a social worker from the Sálvora Foundation.

That is, they decide on the possible rental of a flat, the signing of an informed consent for a surgical operation, the maintenance of accounts or the withdrawal of cash. Unlike other entities, they are only responsible for the exercise of that legal capacity previously called guardianship, but they do not have centres or residential places. “What worries families most is planning for the future.” Many of the queries they deal with and which resulted in 57 requests for advice for the whole of Galicia last year. From testamentary matters to banking matters. “Before they only came for court rulings, but now they can come with a notarial deed,” he explains.

A similar testimony is provided by the Paideia Foundation. SIAX is a service “that provides answers to various types of queries: from support measures for the exercise of one’s capacity; to testamentary or estate administration issues; fundamental rights of the disabled person to advance planning of decisions and care, known as advance directives and self-protection.” Even the order of sale of the properties with which the care is to be paid for is marked. Aspanaes in A Coruña and Áncora in Vigo complete the list.

Carmen, with her children Maria and Dani, with Tea

The life of the administrator in a teaching centre, María del Carmen Lorenzo, changed since her son Daniel Pérez Lorenzo, with severe autism, obtained a residential place to attend to his special needs in 2019. Dani, after more than two years on the waiting list without any vacancies in Galicia, obtained a place through Social Policy with the Menela Foundation in the centre of Castro Navas de Nigrán. Before, an episode with violent behaviour, caused the young man to be expelled from a camp and required several hospital admissions. With the situation more stable, Dani’s parents specify what will happen to him – with 82% disability, degree 3 dependency and ASD – the day they are gone: “His sister is very present in his life, but she is very young and deserves to continue her life, we would not like to mortgage it; we would like her to continue in the same residential centre and her guardianship, the day we are gone, to be assumed by a public figure.”

Juan Lopez, Encarna Fernandez and Andre Lopez

If you see Vigo native André López singing in the youth choir of Coral Casablanca – diagnosed with ASD at the age of 5, but with a privileged memory – you can sense his overflowing health in his mid-twenties. His mother Encarna Fernández Freire explains that “the support of the family in these cases is essential to cope with all the emotional burden that a diagnosis entails.” Despite her youth, together with her husband, Juan López De La Fuente, she has thought about how to manage André’s future. How to leave him tied down. They are grateful for the information services of the associations because – they recognize – the first impact on the Disability Prosecutor’s Office was overwhelming. “We wanted to ask for information to start the process and the list of personal data of all the family members required was so exhaustive that it slowed us down a bit,” they recognize.

 
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