LETIZIA'S CLUB

Devoted to brain injured children

Edited by Maria Simona Bellini

Translation from Italian by Diana Nadalini

 

in Italiano

  DISABLED CHILDREN'S
BILL OF RIGHTS

sent by parents of Claudia Sambucci, Roma (Italy)

 

Principles

The family must feel it is being acknowledged, that its wishes and aspirations are being taken seriously and that its responsibility towards its child is being respected.

The first appointment must be taken rapidly (within one week of the first phone call) and the anxiety of the family has to be addressed. The treatment should follow the guidelines available for each pathology. Appointments at the doctor's office, at home as well as emergency phone numbers have to be organized precisely. The prognosis and future needs of the child, both as an adolescent and an adult, should be discussed with the parents and the child as soon as possible.

Diagnosis and Disability

The parents and the child have to be told the correct name and description of the child's condition, as well as the prognosis and functional implications. All the necessary exams have to be made. If no precise diagnosis can be made, the family has to know what exams were made and the meaning of their results. Each new proposed exam has to be explained. Each family has to receive a report, either written in an understandable language or recorded, or both. The family's opinion has to be asked prior to sending that report to other professionals. The family must be given the opportunity to ask questions about the report. The latter should, as far as possible be delivered personally and not sent. It can be sent if the professional cannot be reached easily.

Treatment and Therapy

If the child takes medication, the parents have to know what it is, why the child has to take it, for how long and in what dosage. If the child has to take several medications, the parents have to be given a written note as to how they should administer them. The family has to know what kind of therapy or rehabilitation the child is receiving, what the objectives of the treatment are and how the family can participate. The objectives have to be clearly defined. The family and the child have to know the main objectives and, if the treatment were to be postponed, the reasons for it. The family must know what other methods are available for treating their child's condition (including controversial or alternative medicine ones). They must know why the therapeutic team has chosen a specific treatment over another. They must be informed that some treatments of questionable efficiency may be a source of stress to the child. A family that chooses other methods should not be abandoned by the therapeutic team.

Information

The family has to be given all the information on their child's condition and its prognosis. It should also be given the possibility of meeting parents of a child that has a similar condition, as well as the name and telephone number of a local organization for disabled children. And finally it should have a genetic exam on the child's condition done by a genetic or pediatric expert.

Medical Assistance

The child must have an accurate vision and hearing exam. It should also have a thorough dental exam. The parents must be given the addresses of hospitals that can assist them in making a diagnosis as well as those that accept day patients. The parents must be told about their social rights, as foreseen by the law. The child with cerebral paralysis that is at risk of Congenital Hip Dislocation must have regular orthopedic exam and hip X-rays. Every child must have the compulsory immunization shots, as well as the recommended ones, except if there are any contraindications. The growth of every child has to be monitored regularly. The family has to be able to access all the aids useful to the child without delays. The parents must know their rights to help with schooling (additional teacher, special assistance) as well as all the other rights included in Law 104/1992. Any limitation of the resources has to be explained.

By F.Ciotti

From "Quaderni ACP, Associazione Culturale Pediatri" ("ACP Journal, Cultural Pediatric Association") 1997, vol. IV n 6:54

 


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