Parents affirmed to sons of owners who are worried that they face eight challenges in caring for their children and securing their requirements, including those related to the education of their children and obtaining the required treatment and rehabilitation, and the need for legal oversight that includes deterrent penalties for institutions that are not committed to applying state laws regarding the protection of the rights of people of determination, and the lack of A competent authority to conduct studies and research to study the situation and needs of people of determination and their families.

They added to «Emirates Today» that they feel the difficulty of retaining their jobs as a result of the pressures arising from caring for their children, which confirms their need for programs that support their moral and humanitarian needs so that they can continue to play their role towards this important group of society.

While the Ministry of Community Development confirmed the issuance of legislation to ensure that people of determination obtain their rights in all areas of life, noting to work to harmonize the federal law regarding the rights of people of determination with the United Nations agreement.

In detail, the father of a citizen of a child with "Down syndrome" said that he is facing a great financial difficulty in keeping up with his child's medical needs, stressing that he needs up to 8000 dirhams per month to cover the costs of his education and undergo rehabilitation and training sessions.

He added that this number exceeds its capabilities, especially as it has other children who need daily expenses.

He explained the necessity of having qualified facilities that help the family to care for the disabled child, indicating that this is impossible for most families, given the high prices required to employ escorts.

He added that the costs of life and the amount of expenses for families with a child of determination are much higher than those of other families.

Another father confirmed that he was unable to register his child in public schools, which she refused because of his intellectual disability, knowing that her right to formal education in these schools is guaranteed by law.

He added that he tried very hard to find a private school with appropriate premiums in which to register his daughter, but that the high costs of private schools, especially when registering a child of determination, prevented him from registering it.

He added that he recently registered it in one of the private centers, but he is still unable to pay the installment.

The mother of a Determination child said that she had to quit her job to follow up on her child, as she was unable to find a suitable person to accompany him while she was at work.

She explained that "children of determination need a qualified person to assist the family in accompanying them, and not to a domestic help specializing in cleaning affairs." She pointed out that this is financially expensive and increases the family's financial burdens, considering that "this reveals the need for a clear mechanism that obliges institutions In a manner that deals with the conditions 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 the institution did not take into account her inability to leave the house in the evening, because of the need of her child.

For its part, the member of the Board of Directors of the Emirates Down Syndrome Association, Alia Hussein, confirmed the existence of a set of obstacles that hinder parents of people of determination and hinder their support for their children, pointing out that the association received many cases that it resorted to, due to its inability to pay the premiums for special rehabilitation centers and expenses Their children with intellectual disabilities, which cost them more than 100 thousand dirhams annually.

She added that «the difference in the conditions for dealing with children of determination in the field of education, and treatment between one emirate and another, is difficult for their parents», explaining that «there are children residing in a emirate, while they need a service that is not available in the emirate itself, while their parents find Difficulty in providing transportation means and costs, in addition to the associated effort and time in light of their job and family obligations ».

Hussein stressed that «there are vulnerable families that are difficult for them to request financial assistance, in order to be able to meet the requirements of treating and educating their children whose concerns are important», noting the necessity of providing financial and moral support in a systematic, effective and continuous manner, and accompanies each case of disability according to their circumstances and the type of challenges they face.

For his part, Muhammad Al-Ghafli - a writer, theater actor and social activist who mastered work on computers and smartphones through the method of "Braille", wrote poetry and wrote a book entitled "Life has another taste" - that "the failure to issue the executive regulations of Law No. 29 of 2006 regarding Rights of People of Determination hinder the owners of determination from obtaining some of their rights, because the regulation determines how the law is applied, and imposes deterrent penalties on those who violate its application, and explains how to deal with breaches in detail.

Al-Ghafli considered that there are a number of obstacles that prevent people of determination from obtaining the rights of their children, such as the right of financial guardianship that is vested in the judicial authorities.

He added that «adults of determination who are also facing difficulty in exercising their daily lives, because they are not given the right to manage their financial affairs».

He explained that "they can not deal with any banking institution except through an agent or through the court," pointing out that there are many examples of people with visual or hearing disabilities who are not allowed to manage their financial affairs.

The Ministry of Community Development assured «Emirates Today» that the People of Determination Law 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 of the council had already been issued in this regard. As for the executive regulations, it was limited to Article Eight of the law, and included "the protection of the correspondence of the disabled, his medical records and personal matters", while noting that the protection of the records is guaranteed under the laws and special legislation.

The Ministry affirmed that work is currently underway to harmonize the federal law on the rights of persons with disabilities with the United Nations Convention on the Rights of Persons with Disabilities, and confirmed that it is implementing programs to educate their families about ways to deal with their children of determination, noting that the law ensures that people of determination obtain all their rights, equally The rest of society.

As for the issue of not giving people of determination the right to act independently in their financial affairs, the Ministry indicated that people of determination with visual, physical and auditory disabilities enjoy full rights to dispose of their financial affairs, but it affirmed that people with mental disabilities and autism need financial supervision from their families To help them manage their finances.

She added that in order to ensure that they are not exploited, the Council of Ministers finally approved a policy of protecting people of determination from abuse, where financial or material abuse is a form of abuse, which includes theft, fraud, exploitation, or coercion.

The Ministry of Community Development confirmed that it has worked, within the national policy to enable people of determination, to coordinate with the various government and private agencies that provide services to people of determination, in order to appoint the persons responsible for these services in each service agency, to delegate them to the tasks required of them, in order to facilitate the procedures of owners Carefree.

Eight major challenges can be identified, which were reported by parents of children of determination, the foremost of which is the need for legal oversight that includes deterrent penalties for institutions that do not comply with the application of state laws, regarding protecting the rights of people of determination, and adding provisions that guarantee the independence of the people of determination, financially and socially.

Challenges include the lack of health insurance that includes all types of disabilities, in addition to the existing insurance, which covers some types of disabilities, does not include many of the needs required to treat them, which increases the burden on their families. Children of determination may lack the necessary medical needs and treatment plans, as a result of the financial incapacity of their relatives, for example there is no health insurance that covers career and cognitive rehabilitation sessions, while the cost of these sessions exceeds the financial capabilities of most families.

One of the challenges facing people of determination is the lack of sufficient government centers to treat and rehabilitate them, which compels their relatives to resort to private centers, which is a financially expensive solution, as most centers exaggerate in determining the required fees, in addition to the need for continuous monitoring and control as a result of the low level Services provided by many of them.

Challenges also include obstacles facing people of determination to obtain their right to education, such as the right to integrate into formal education in government schools, as parents affirmed to children of people of determination that government schools refuse to accept their children because of disability, at a time when the cost of registering them in private schools and centers Special qualification, to approximately 100 thousand dirhams annually.

Among the challenges facing people with visual impairment is the lack of an early intervention center for people with visual impairment, specializing in their rehabilitation from birth to six, as are the intervention centers available for other types of disabilities.

Added to the challenges is the lack of preparedness of the educational and life environment for the uses and learning of people of determination, as the devices required for the arrival of information for persons with disabilities (such as electronic lines) are only available in a few educational institutions. There are also no ATMs in banking institutions that enable people of determination to use them, except in a very limited number, not more than two banks nationwide.

Challenges include the lack of a specialized body to conduct studies and research, to study the conditions and needs of people of determination and their families, who can come up with clear practical solutions to develop their lives.

The list of challenges includes the absence of a law that protects the rights of parents of people of determination who suffer a lot from moral and financial losses due to the difficult conditions they suffer, as a result of the presence of children of people of determination who have different, stressful and costly needs.

Financial Affairs Administration

Muhammad Al-Ghafli, a writer, theater actor and social activist, drew attention to the lack of facilities and tools required in banking institutions “that enable people 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 mechanism appropriate for the use of various types of disabilities, except for the availability of them in two banks only at the state level.

He added that «the lack of aids is not limited to banking institutions, but also affects educational institutions, which creates a major obstacle in the educational process for various types of disabilities, bearing in mind that the law guarantees their right to access to education».

health insurance

The Ministry of Community Development affirmed, regarding the absence of health insurance that covers treatment of illnesses of the people of determination and the specialized sessions for their movement and career rehabilitation, that the draft cabinet decision on health services for people of determination included the provision of health insurance in hospitals and private centers for their care.

8000

An average dirham per month of education for a child with Down syndrome and undergoing rehabilitation and training sessions.

100

Thousand dirhams annually, the cost of premiums for special rehabilitation centers.

Alia Hussein:

"The difference in the conditions for dealing with people of concern from one emirate to another makes it difficult for their families."

Muhammad Al-Ghafli:

"Not to issue the executive regulations of the Determination Rights Law, hindering their access to some of their rights."

Mother of a child: People of determination need a person who is qualified to accompany them, not home help.

Schools refuse to integrate children with intellectual disabilities, and their families are financially unable to register them in special centers.

Community Development: Work is underway to harmonize the Law of the Rights of People of Determination with the United Nations Convention.