For the rights of children with Functional Diversity of the Community of Madrid

Aiuri is a 2 year old girl. Happy. Smiling. Cheerful. He likes to dance, animals, music... Like any child his age. She has spina bifida, a recognized 76% degree of disability and has been in a wheelchair for some months.

Because of her illness, she entered the operating room even before she was born, since she was operated on during the 26th week of gestation at the Vall d'Hebrón Hospital in Barcelona, ​​where she was born 7 weeks later.

She needs a catheter every four hours and, having been premature, requires from his discharge from the Neonatal ICU at two months of birth, Early Care and Physical Therapy.

Since birth we have found a wall by appealing to administrations and we are sure that the only way to ensure that the rights of our daughter and the other 4718 children under 5 years of age with Functional Diversity who live in the Community of Madrid are respected, Is to make our situation public and try to get information that is received by the people who have the power to reverse it.

In case the parents of a child with a disability do not have enough with the surgical interventions, hospital admissions and medical examinations to which they are subjected, the Community of Madrid and other public administrations are responsible for putting all kinds of obstacles and obstacles on the way to achieve the equality of our children.

We and many other parents in Madrid feel that with the current model of management in Disability and Dependency, our children are the least benefited by "Social and Family Policies." Among other difficulties we face:

- The slowness in Child Assessment (Early Attention, Disability ...)

- A degree of Dependency not adjusted to the situation, in addition to the slowness and non-payment of the Care for the Family Environment benefit.

- Failure to pay the Dispensing Reimbursement for Displacement and Orthopedics.

- The lack of resources in nursery schools (nurse and adapted material).

- The need for playgrounds and accessible facilities.

These obstacles could be saved if, from the moment our children are born, the bureaucratic apparatus will work more quickly in these cases and grant these children the aid that corresponds to them. Thus, from the outset, we would all contribute to the growth of unequal conditions.

Therefore, we ask that you spend a minute of your time to sign this petition and lend us your support to continue fighting for the rights of all children with Functional Diversity of the Autonomous Community of Madrid.

If you want to expand the information on Spina Bifida and Hydrocephalus, to know more about the obstacles that we have to save every day and to inform you about the needs and requests of people with this disease, you can check the website of the Spanish Federation of Spina Bifida and Hydrocephalus At http://www.febhi.org.

We want to insist that with this letter we do not want to "ask" but to make our situation visible and claim that the rights recognized to our daughter and other children with different capacities are put into practice and not just remain on paper. It is our duty as parents to ensure that the principle of equality and the law are applied to facilitate their integration.

We are not asking for a favor, but rather what is right for our children.

We believe it is the occasion, in writing this letter, to convey our appreciation and sincere thanks to all the professionals who have helped us every day to improve the future of Aiuri, who have always been limited by the lack of resources. The regional, state and international regulations have been promoted to guarantee, ultimately, equality. Its implementation should not be limited by lack of resources and existing resources would have to reach all children and make their use more effective. We also want to thank HomeServe Spain and Asepeyo for giving us the facilities that are systematically denied to us by the Public Administrations.

An extension of this letter has been sent via certified mail on the same date of its online publication to the Ombudsman, S.M. The Queen as president of the Royal Patronage on Disability, the President of the Community of Madrid and the Mayor of Madrid.

THANK YOU!

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