Parents of children with learning disabilities in 'dire situation', FNC hears
The Federal National Council's Deputy Speaker, Hamad Al Rahoomi, said families need more support
Parents of children with learning disabilities in the UAE face being priced out by the cost of long-term care and need urgent help if they are to escape a "dire situation".
Members of the Federal National Council called for a policy shake-up to ensure suitable support networks are in place.
Hamad Al Rahoomi, Deputy Speaker of the FNC, said overstretched families are left with neither the time or the resources to spend on their children.
During an FNC session this week, members called for retirement ages of affected parents to be reduced and free services rolled out to address concerns.
This woman was able to reach me, but there are more than a hundred others whose voices are not heard
Hamad Al Rahoom
"The reality today is sad," said Mr Al Rahoomi.
He told the story of a Ras Al Khaimah woman he referred to as "the mother of champions" to highlight a plight he said is endured by hundreds.
“This woman has been struggling for years; her first disabled child is 29, the second is 21 and the third is 14.”
He said the woman, a teacher employed by the Ministry of Education, is unable to devote her time to her children as she would not receive her pension rights if she retired before the age of 49.
“She is exhausted, and cannot afford unpaid retirement,” Mr Al Rahoomi told the Minister of Community Development, Hessa Buhumaid, during the FNC session.
The mother herself has her own health issues to contend with.
“So my question is: how can we help this family and similar families?” said Mr Al Rahoomi.
“This family’s situation is dire. I have been visiting them for the past two years, something urgent needs to be done.
“What will the ministry lose such a woman was allowed to retire now?
“We ask that an ultimate solution is found, because this woman was able to reach me, but there are more than a hundred others whose voices are not heard.”
Ms Buhumaid said the ministry aids families of people with disabilities with a monthly salary of Dh5,000 for each child.
“We are always ready to help,” said the minister.
Mr Al Rahoomi proposed introducing legislation to allow for early retirement in such circumstances.
The woman whose compelling story was told by the FNC member opened up to The National about the challenges she and others like her must face.
She said the government centre serving special needs does not accept those with extreme disabilities.
The mother, who asked to be referred to only as Um Humaid, said her two daughters, Maryam, 29, and Amani, 21, suffer from severe autism.
The centre also does not accept cases above 18 years of age.
“Two years ago they opened a private centre here [in RAK], we enrolled the three of them in it," said the 48-year-old.
The centre cost she and her husband between Dh44,000 and Dh95,000 for each child, which she said they could not afford.
They withdrew their children from the centre after one year, but left with debts of more than Dh200,000.
“We are still paying back the funds of that year to the centre, from the allowance money we receive from the ministry,” she said.
Her son Abdullah, 14, who suffers from moderate autism is currently attending sessions at the government centre in Ras Al Khaimah, but once he turns 18, he won’t be accepted there anymore.
“So where do we take our children?” she said.
FNC member Naama Al Mansouri called for a dedicated autism centre that serves Emiratis to be introduced, with services offered for free.
She presented figures that show autism is on the rise among Emiratis.
She said there were 1,419 Emiratis with autism recorded in 2019 - up from 1,359 in the previous year.
“There are private centres that charge from Dh70,000 up to Dh150,000 (per year) and not all parents can afford that,” she said.
The minister told Ms Al Mansouri she would personally study the proposal.
“We need centres that have autism specialists, and curriculums that are designed for autistic children, because they have the capability to learn,” said Um Hamdan, the mother of autistic 10-year-old boy Khalifa Mohammed, from Fujairah.
She also proposed that mothers of disabled children are allowed flexible working hours.
"I know many working women who have two or three children with special needs, and they do not have time to attend to them."
Updated: January 25, 2020 09:48 AM