Mada, autistic with severe non-verbal intellectual disability

Two families who entrusted their children urgently to the care of continuous assistance residences told the To have to the ordeal they went through. To the point of bringing their children home. Portraits.

Since the death of his wife in 2019, Wissam Charara has taken care of his three children alone. But it is the eldest of the siblings, Mada, a 25-year-old autistic young woman with severe non-verbal intellectual disability, who takes up most of her time.

In April 2020, Mr. Charara applied for emergency accommodation for Mada. After a few months of waiting, his daughter joined the RAC des Roses on the 1er April 2020. As the pandemic rages, all users are hospitalized due to COVID-19. After a few months without seeing his daughter, Mr. Charara can visit her again. “I found that nobody knew anything about her; she had no file. She can’t eat dairy, and only drinks apple juice, but she ate everything. They were also unaware that she was wearing orthotics,” recalls Mr. Charara.

Despite a doctor’s request to take a blood test, which Mr. Charara sent to the RAC staff as soon as his daughter arrived, the blood test has still not been carried out three months later.

“Over time, Mada developed an iron deficiency. The prescription was lost and they did not call the family doctor. I had to bring a new one and pushed everyone to take the test. She was thin, pale, surrounded. The balance was done after 7 months and they found that the iron was at zero. She had to be taken to the emergency hospital for a transfusion,” says Wissam Charara, who decided to file a complaint with the Service Quality and Complaints Commission and then with the Public Protector. The latter underlines in his conclusions the exceptional nature of the pandemic and specifies that “several members of staff have left definitively, thus resulting in a shortage and a large turnover of poorly trained resources”. The Québec Ombudsman’s investigation also shows that the Integrated Health and Social Services Center had to put an action plan in place at the end of fall 2020 to remedy the RAC situation.

Diarrhea for 30 days

A few days after leaving the hospital, Mada returns to the RAC despite her father’s reluctance.

“After a few weeks, they told me that my daughter had diarrhea for 30 days! I took my daughter home,” explains the father of the family.

Mr. Charara has been taking care of Mada full-time for almost two years now. “I stopped my work, to sleep properly, to eat properly. I am out of work. She takes up all my time. She is clinging to me, screaming, hitting herself with both hands, ”says Mr. Charara, who denounces the lack of support from the government.

The father can count on 21 hours per week in employment-service check for home care and three days in a day center. « That’s three hours a day. I can not work ! I can’t go on like this, ”he says, discouraged.

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