Parents of children from the owners assured that they are facing eight challenges in caring for their children and securing their requirements, including what is related to the education of their children and their obtaining the wanted treatment and rehabilitation, and the need for legal control that includes deterrent penalties for institutions that do not commit to the application of state laws regarding the protection of the rights of people of determination, and the absence of existence A authority specialized in conducting studies and research to study the conditions and needs of people with determination and their families.
They added to «Emirates Today» that they are difficult to keep their functions as a result of the pressures resulting from interest in the care of their children, which confirms their need for programs that support their moral and humanitarian needs so that they can continue to fulfill their role towards this important group of society.
While the Ministry of Community Development affirmed the issuance of legislation to ensure that people of determination obtain their rights in all areas of life, noting that work on the alignment of federal law regarding the rights of people of determination with the United Nations Convention.
In detail, a citizen father of a child with “Down syndrome” said that he is facing great financial difficulty in keeping up with his child’s treatment needs, stressing that he needs up to 8,000 dirhams per month to cover his education expenses and undergo rehabilitation and training sessions.
He added that this number exceeds its potential, especially since he has other children who need daily expenses.
He explained the necessity of a qualified companion who helps the family to care for a child with disabilities, indicating that this is impossible for most families, given the high prices required to employ the accompanying.
He continued that the costs of life and the size of expenses for families who have a child with determination are much higher than the expenses of other families.
Another father confirmed that he was unable to register his child in government schools that she rejected because of her mental disability, knowing that her right to regular education in these schools is guaranteed by law.
He added that he tried hard to find a private school with appropriate installments in which he recorded his daughter, but the high costs of private schools, especially when a child from the owners of anxiety prevented him from registering it.
He continued that he recently recorded it in one of the private centers, but he is still unable to pay the installment.
A mother of a child of anxiety said that she had to leave her job to follow her child, as she was unable to find a suitable person to accompany him while she was at work.
She explained that «children with determination needs a qualified person to appoint the family to accompany them, and not to a home assistant specializing in cleaning affairs», noting that this is financially costly and increases the material burdens of the family, and considering that “this reveals the need for a clear mechanism that obliges institutions In a way that takes into account the circumstances of the people of those with determination, in a manner that guarantees their right to continue the job, and does not threaten their job and financial security ».
She explained that she was working in a major educational institution, but that the institution did not take into account its inability to leave the house in the evening, because of the need of her child.
For its part, a member of the Emirates Association for Down Syndrome, Alia Hussein, confirmed the existence of a set of obstacles that haunt parents of people with determination, and impeding their support for their children, pointing to the association receiving many cases that it resorted to, due to its inability to pay the premiums of special rehabilitation centers and expenses Their children with intellectual disabilities, which cost them more than 100 thousand dirhams annually.
She added that “the contrast in the conditions for dealing with children with determination in the field of education, and treatment from one emirate and another, makes it difficult for their families,” explaining that “there are children residing in a Emirate, while they need a service that is not available in the emirate itself, while their families find Difficulty providing transportation and costs of transportation, in addition to the accompanying effort and time in light of their functional and family obligations.
Hussein stressed that «there are ethical families that are difficult to seek financial assistance, so that they can meet the requirements of treating and teaching their children with determination», noting the need to provide financial and moral support for them in a systematic, effective and continuous manner, and keep pace with each disability case according to its circumstances and the type of challenges it faces.
For his part, Muhammad Al -Ghafli – a writer, theatrical actor and social activist, said that he mastered work on computer and smartphones through the “Braille” method, and wrote poetry and wrote a book entitled “Life is another taste” – that “the failure to issue the executive regulations of Law No. 29 of 2006 regarding The rights of people of determination, hindered the owners of anxiety to obtain some of their rights, because the regulations determine how the law is applied, and it also imposes deterrent penalties on the bodies that violate its implementation, and clarify how to deal with cases of breach in detail.
Al -Ghafli considered that there are a number of obstacles that prevent those with determination from obtaining the rights of their children, such as the right to financial guardianship assigned to the judicial authorities.
He added that «the owners of adults also face difficulty in exercising their daily lives, because they are not giving the right to manage their financial affairs.
He explained that “they can only deal with any banking institution through an agent or through the court”, pointing out that there are many examples of visual or auditory disabilities, who are not allowed to manage their financial affairs.
The Ministry of Community Development confirmed to «Emirates Today» that the law of the owners of determination focuses in most of its articles on issuing decisions from the Council of Ministers, or on issuing ministerial decisions to implement its provisions.
She added that more than one decision was issued by the Council in this regard, while the executive regulations were limited to the eighth article of the law, and included “the protection of the disabled correspondence, its medical records and personal matters”, noting that the protection of records is guaranteed under the laws and special legislations.
The Ministry has currently emphasized the compatibility of the federal law regarding the rights of the handicapped with the United Nations Convention on the Rights of Persons with Disabilities, and it also confirmed that it applies programs to educate their families about ways to deal with their children with determination, noting that the law guarantees the owners of determination to all their rights, in an equal amount with The rest of the community.
As for the issue of not giving people of determination their right to dispose of independence in their financial affairs, the ministry indicated that the owners of determination with visual, physical and audio disabilities enjoy the full rights To help them manage their financial affairs.
She added that in order to ensure that they were not exploited, the Council of Ministers recently approved the policy of protecting those with determination from abuse, as financial or material abuse is one of the forms of abuse, which includes theft, fraud, exploitation or coercion.
The Ministry of Community Development confirmed that it worked, within the national policy of empowering people of determination, to coordinate with the various governmental and private agencies that provide services to people of determination, in order to appoint the persons responsible for these services in each service authority, to appoint them with the tasks required of them, for the facilitation of the procedures of owners Identity.
Eight main challenges can be determined, which are spoken by parents of children of anxiety, foremost of which is the need for legal supervision that includes deterrent penalties for institutions that do not abide by the application of state laws, regarding the protection of the rights of people of determination, and the addition of items that guarantee the independence of the people of determination, financially and socially.
The challenges include the lack of health insurance that includes all types of disabilities, in addition to the fact that the existing insurance, which covers some types of disability, does not include many of the needs required to treat them, which increases the burdens on their relatives. Children with concerns may lack medical needs and necessary treatment plans, as a result of their financial disability, for example there is no health insurance that covers job and cognitive rehabilitation sessions, while the cost of these sessions exceeds the financial capabilities of most families.
Among the challenges facing people of determination is the lack of sufficient government centers to treat and rehabilitate them, which forces their relatives to resort to private centers, which is a financially costly solution, as most centers exaggerate in determining the required fees, as well as they need continuous follow -up and control as a result of low level The services many of them provide.
The challenges also include the obstacles facing people with determination to obtain their right to education, such as the right to integrate in formal education in government schools, as parents of children of determination affirmed that public schools refuse to accept their children because of disability, at a time when the cost of their registration in private schools and centers reaches Special qualification, to nearly 100 thousand dirhams annually.
One of the challenges facing visual disabilities is the lack of an early intervention center for visual disabilities, which is concerned with qualifying them from the age of birth until six, similar to the intervention centers available for other types of disabilities.
In addition to the challenges, the lack of preparedness of the educational and life environment for the uses and learning of the owners of determination, as the devices required for the arrival of information to the owners of disabilities (such as electronic lines) are not available, except in a few educational institutions. Also, automatic ATMs are not available in banking institutions that enable those with determination to use them, except in a very limited number, not exceeding a bank at the state level.
The challenges include the lack of a specialized body for studies and research, to study the conditions and needs of people with concerns and their families, which can conclude clear practical solutions to develop their lives.
The list of challenges includes the absence of a law that protects the rights of the parents of the owners of determination, who are incurring many moral and financial losses due to the difficult circumstances they suffer, as a result of the presence of children with determination who have different, stressful and expensive needs and demands.
Financial Affairs Department
Mohamed Al -Ghafli, a writer, theater actor and social activist, pointed out that the facilities and tools required in banking institutions “that enable the owners of determination to exercise their right to manage their financial affairs, such as electronic signature, electronic lines in preparing financial documents, in addition to the lack of exchange devices The appropriate automation to use various types of disabilities, except for its availability in two banks only at the state level.
He continued, “The lack of auxiliary means is not limited to banking institutions, but also affects educational institutions, which creates a great obstacle to the educational process for various types of disabilities, knowing that the law guarantees their right to obtain education.”
Health insurance
The Ministry of Community Development confirmed that there is no health insurance that covers the treatment of diseases of people with determination and specialized sessions in their motor and functional rehabilitation, that the draft cabinet resolution regarding health services for people of determination guarantees the provision of health insurance in hospitals and private centers to care for them.
8000
Monthly dirham average the cost of teaching a child with Down syndrome and undergoing qualification and training sessions.
100
A dirham annually the cost of the premiums of private rehabilitation centers.
Alia Hussein:
“The contrast in the conditions for dealing with owners is between the emirate and another, it is difficult for their families.”
Muhammad Al -Ghafli:
“The executive regulations of the Law of the Rights of Defammers are not issued, obstructing their obtaining some of their rights.”
A child’s mother: The owners of determination need a qualified person to accompany them, and not for home assistance.
Schools refuse to integrate children with mental disability, and their families are financially unable to register them in private centers.
“Community Development”: Work is underway to align the law of the rights of people with determination with the United Nations Convention.