Parents suggested a support fund supervised by a government agency

Diagnosis, fees and integration are the main challenges of "autism"

• Demands to provide government centers for the care and rehabilitation of children of determination.

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• The cost of diagnosing and treating people with autism exceeds the capabilities of most families.

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Parents of children with autism have identified several challenges they face in rehabilitating and training their children, most notably diagnosis, the high cost of treatment, integration in schools, in addition to the psychological and social pressures their mothers are exposed to.

They made proposals that would contribute to raising the financial burden on families, most notably the establishment of a support fund under government supervision, and an increase in the number of government centers that provide free diagnosis and treatment to children.

They emphasized that children with autism have great creative abilities and potentials, which need special care to develop them, but their energies are diminished due to the challenges of treatment and diagnosis.

For its part, the Ministry of Community Development confirmed to "Emirates Today" that it is currently working on adopting a national policy for people with autism, with the aim of providing the best possible support and care for people with autism and their families.

The mother of an 11-year-old citizen with autism, Linda Dahmani, said: “I am divorced, and I do not work, and all of my family's income (8000 dirhams) is provided to us by the Community Development Authority in Dubai, distributed as follows: 5000 dirhams for the child and 3000 divorced pensions.

This amount is not sufficient for my son's medical fees, in addition to the daily living expenses.

She pointed out that the tuition fee for an autistic child in school is greater than the fees paid by the rest of his classmates, because he needs more care and more teachers, in addition to a "shadow teacher", noting that the authority contributes 40,000 dirhams of tuition fees, while the fee ranges The share in specialized centers is between 650 and 1000 dirhams.

She stated that she has been following her son's case with Al Jalila Hospital in Dubai since 2017. A while ago, his doctor gave him a drug to calm him from anxiety, but the more he took the medicine, his condition worsened, and the higher the dose of the drug, the worse the condition, to the point that he started beating himself, and controlling him was no longer easy.

When we went to the hospital, officials put him in a room, and after three days they told me that the insurance would not cover the costs of treatment, meaning that I had to pay 4,000 dirhams for every night in the hospital.

And she continued, "When I contacted the authority to explain to the officials that the insurance does not cover the treatment, they asked me to go to the Emirates Red Crescent Authority to obtain a donation for his treatment."

And considered that it is necessary to amend the insurance to include treatment and rehabilitation for autistic children, and no treatment request is refused for any autistic child, and for hospitals to include a special section for treating autistic children, because some hospitals do not allow entry to children with autism.

Muhammad al-Huli (the father of two twin children with autism) confirmed, “There are no supervisory bodies on private autism centers to adjust their fees in proportion to the capabilities of the families of autistic children and the duration of treatment, in addition to that awareness of autism, whether for parents or the community, is not enough.” To the fact that "the number of government centers that take care of children with autism at the state level is very small, and the centers collect cases with each other although each case differs from the other, and therefore needs special care, and this combination results in children being affected by each other's behavior."

He pointed out that «the lowest fees that a specialized center can charge from parents of autistic children, is 60 thousand dirhams annually, but this amount may be burdensome for many families», pointing out that the Health Authority sponsored - before the Corona pandemic - support for treatment expenses His sons, but things changed after the pandemic.

"My wife retired from her job and devoted himself to caring for the two children, with the aim of reducing the fees required to take care of them, as circumstances forced me in one period to borrow an amount of 350,000 dirhams from the bank to treat them, because the prices of private centers are high."

And he called for providing governmental centers for the care and rehabilitation of children of determination.

He stressed the need for early diagnosis of children in government centers, to determine the condition of each child, so that it can be dealt with early.

As for Nasser Hassan (father of a child with autism), he mentioned that the private school fees that accept autistic children exceed 100 thousand dirhams, which are the tuition fees, amounting to 58 thousand dirhams, and the fees for other care services, and the shadow teacher whose monthly salary ranges between 4000 and 5000 dirhams, demanding To support the inclusion and care of children with autism, in the study and treatment.

He explained that the cost of behavioral therapy for his child is high, as the price per hour is 400 dirhams, and the price of the drug for two weeks is 2,500 dirhams.

He pointed out that the most prominent challenges facing the family of a child with autism, is that health insurance does not include the treatment listed under the name of Autism Diagnosis, and it does not include medical advice or medication.

He called for reviewing the retirement law for mothers of people of determination, including those with autism, while giving the working mother flexibility in her work time to perform her duties as a mother and employee, pointing out that his wife is one of the doctors (first line of defense), and her work requires her to spend a long time in the hospital, just as her child He needs to be looked after at home, and she can't reconcile the two.

As for Nariman Al-Ghandour, a mother of a four-year-old child, she says that her son underwent a diagnosis at the Zayed Higher Organization for People of Determination in Abu Dhabi, and the result showed that he suffers from autism spectrum disorder.

She confirmed that she had presented the child to more than one specialist doctor, and that the diagnoses were inconsistent, so she suggests identifying approved bodies for diagnosis, provided that their reports are documented at the state level.

And she demanded that children with autism be treated at nominal prices, and that insurance companies include the examination and treatment of autism under their insurance umbrella, with the need to direct private centers to reduce their fees in proportion to the average income of families, noting that her husband's salary does not exceed 10 thousand dirhams, while the minimum treatment is monthly. For her child, more than his father's salary.

On the other hand, the General Director of the Child Center for Early Medical Intervention, Dr. Heba Shata, defined autism as a defect in the work of the brain's functions, as the brain receives stimuli and cannot interpret them, which results in its inability to issue appropriate reactions, pointing out that the behavioral treatment for autism It focuses on programming the brain and preparing the child to enter school.

She added that the Corona pandemic affected life in general, and its repercussions also affected people of determination, especially autistic children, who do not leave their homes with their families except for the most urgent necessity, adding that “an autistic child needs care and follow-up around the clock.”

Shata added that the life system of the autistic child changes from the discovery of the infection until he enters the school, because she is making all the resources she has to support him, pointing out that the child needs an early intervention program, after assessing his condition, which means that he undergoes an individual rehabilitation program for eight hours a day. The cost of this program ranges between 10 and 40 thousand dirhams per month, and some children need additional treatment services, which raises this cost.

She said that charitable organizations provide support in the amount of 25 thousand or 30 thousand dirhams annually, at a rate of less than 40% of the cost of the rehabilitation and treatment program for the child annually, noting that the lack of coverage of health insurance for treatment, and the absence of bodies supporting these cases mainly, are part of the difficulties that Families of children with autism face.

Shata suggested establishing a fund to support autistic children, under the supervision of an official agency, because many families cannot provide the sums required to treat and rehabilitate their autistic children.

On the other hand, the Ministry of Community Development revealed to "Emirates Today" that it is working on adopting a national policy for people with autism, with the aim of providing the best possible support and care for them and their families.

The ministry’s statement came in response to a question about the possibility of responding to a proposal to establish a support fund, which was presented by parents facing financial problems in the journey of treating their children with autism.

She emphasized that the fees for autism treatment programs in private centers licensed by them ranged between 12,000 and 80,000 dirhams.

And it ranged between 120 and 400 thousand dirhams per year, which is very expensive and burdensome.

The ministry said that there is an approved list of centers' names at the state level and the fees specified in them, and that the fees in them do not exceed 80 thousand dirhams.

It also confirmed the existence of a diagnostic center affiliated with it, which adopts the best standards in diagnosis, and currently provides its services to citizens only.

The ministry added that there are special centers approved for diagnosis that can benefit from their services, such as the Dubai Autism Center, the Al Noor Center for People of Determination in Dubai, Al Jalila Hospital, and others.

The Ministry affirmed that the national policy for empowering "people of determination" guarantees a decent life for them and their families, and it targets, with its qualitative and continuous axes and initiatives, all people of determination from various disabilities, including the autism group.

And it considered that the policy axes collectively are capable of providing innovative care frameworks for people of determination through specific development initiatives at the level of government work, the private sector or civil institutions.

6 basic themes

The national policy for people with autism is based on six main axes, the axis of social protection and family empowerment focuses on implementing projects that provide social security policies suitable for the needs of people with disabilities by adopting a unified classification in the country, harmonizing local legislation and federal law with the International Convention on the Rights of Persons with Disabilities, and increasing The number of those registered in the disability card, linking the card to health, educational and other services, and linking it to the identity card and providing suitable housing.

The policy axes include the health and rehabilitation axis, which deals with providing comprehensive health care, and a set of medical examinations in the pre, during and postpartum stages to prevent disability.

It also includes the development of research and studies on disabilities, genetic syndromes, rare diseases that cause disability, and the launch of a national program for early detection.

As for the education axis, it focuses on developing an inclusive educational system in the fields of general, vocational and higher education, providing teachers and specialists in various disabilities and stages, and opening sub-specializations for the education of people with disabilities by universities and institutes.

The policy axes include the axis of vocational training and employment, where a number of initiatives must be worked out that ensure the provision of vocational rehabilitation programs that suit various disabilities and levels of severity, develop them in line with the requirements of the labor market, and launch professional certification programs for them in cooperation with government and private agencies.

• The school fees for an autistic child are large, because he needs more care and more teachers.

• The number of government centers that take care of children with autism at the state level is very small.

• The quota fee for specialized autism centers ranges between 650 and 1000 dirhams.

• The life of the family of a child with autism changes from discovering the infection until entering school.

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