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Blue, Beaten and Bruised

In the absence of adequate governance, autistic children suffer at Egyptian centres

Safaa Ashour
quote
How did you know that the nursery supervisor was the one who broke your daughter’s arm?

This was our first question to Hanan Samir, the mother of 9-year-old Zamzam who has autism.

“Zamzam grabbed my arms and twisted it to show me exactly what had happened to her during that day at the special needs centre” answered Samir. Samir was surprised to receive a call from the director of the centre asking her to come to the facility immediately due to her daughter’s involvement in a “small incident”.

Samir continues, "my daughter's arm was completely flaccid, as if she had no bones... but the centre’s doctor assured me that it was just a sprain." However, the doctors at the Mar Morcos Hospital, confirmed that Zamzam suffered a double humerus fracture in her right arm, and would require surgery to properly restore the functions of her arm.

After the incident, Samir had no choice but to file a legal case against the centre in a court in Al-Muntazah, Alexandria. The prosecution began investigating the incident last December, and Zamzam's psychological condition is still deteriorating despite a 4-month recovery period since the incident. This is largely due to her inability to use her right hand to carry out her favourite hobbies, including drawing and colouring. Meanwhile, the centre continues to operate and receive people with disabilities, despite the ongoing investigation. The administration informed Samir that the Ministry of Social Solidarity suspended the supervisor responsible for the incident from working during the investigation period.

Special World

Zamzam’s story is one of seven documented over nine months, of autistic children who have been subjected to numerous violations in special needs centres, disregarding the recommendations made by the Egyptian Medical Association.

This investigation documented the violations of 10 communication centres in Cairo, Alexandria, Minya and Ismailia. This is largely due to the absence of a comprehensive unified law to govern and regulate these centres as well as the Ministries of Health and Social Solidarity’s inability to provide and implement monitoring mechanisms.

group children
Number of children with autism
800,000
in Egypt 2017

According to the World Health Organisation, Autism spectrum disorder (ASD) refers to a range of conditions characterised by some degree of impaired social behaviour, communication and language, and a narrow range of interests and activities that are both unique to the individual and carried out repetitively. Additionally, 50% of those with Autism suffer from various intellectual disabilities.

Disability Skills Development Expert

Nadia Abdullah, a pediatrician at the City Caritas Charity Centre and expert in disabled child development since 1981, confirmed that communication sessions are an important element in the integration of children with autism. Further, Abdullah confirms that communication sessions with parent participation coupled with a realistic timeline and targets could allow autistic children to go to school, and eventually university and work.

Abdullah explains that autistic tantrums and outbursts, which confuse other people, are due to their sensitive nature and their unique reactions to sound, texture and color.

According to previous statements by Muhammad Fateh, Director of the Centre for Care and Rehabilitation of Autistic Children at the Ministry of Social Solidarity and the last official census, the number of autistic children in Egypt was estimated at 800,000, as announced during the celebration of the International Day of Autism in 2017.

According to Farida Al-Sheikh (the mother of a young autistic man), it is difficult to obtain official figures for the number of people with autism in a particular governorate. Al-Sheikh, a member of the Autism Mothers’ Association since 2016, tried to obtain an official number for the governorate of Alexandria where she resides, but to no avail.

Physical Abuse

The initial medical report issued by Boulaq Dakrour General Hospital on September 23, 2018, described the injuries sustained by autistic 17-year old Muhammad in a disability rehabilitation centre in the Giza Governorate as “bruises and abrasions on the right side of the face, abdomen, foot, and shoulder.”

Walaa Zakaria, Muhammad’s mother, explains how her illness led her to admit Muhammad to an overnight centre specialised in developing his communication skills. Within 20 days of Muhammad’s stay at the centre, Walaa started noticing marks and bruises appear on his body, as well as repeated cases of involuntary urination. When she confronted the centre with her concerns, they denied the possibility of abuse.

However, Walaa did not believe the centre’s statement, and turned to the law. Consequently, a court ruling (Case No. (35760), 2018) was issued in her favour in the “6th of October Court” condemning the president of the centre. The ruling charged the centre with negligence in accordance with Clauses 1 and 2 of Article 244 of the Penal Code, and a fine of 300 Egyptian Pounds.

Out of fear of exposing Muhammad to more trauma and abuse, Walaa decided to care for her son at home. Meanwhile, the aforementioned centre continues to operate and receive autistic people, under the management of the same director charged with negligence. Another report issued by the Ministry of Social Solidarity in Giza in 2018 indicated that the centre did not possess or obtain a work permit to operate within the field of rehabilitation, and specifically, of people with disabilities.

Sherine Badran, a writer residing in Menoufia, also stopped taking her 14-year old autistic son Iyad to rehabilitation and communication centres, after one of the centres refused to allow her to observe the sessions. Badran refuses to name the centre, but expressed other suspicions including the absence of a clear treatment plan for her son, despite the monthly cost of the sessions being E£6,000. Naglaa Mohamed was discouraged from frequenting communication centres in Minya, where she lives, with her 8-year old autistic son Iyad, after her experiences with another communication centre in the Faisal district, Greater Cairo, where she lost E£5,000 during an evaluation and a few sessions with no apparent treatment plan.

Sudden Death

Intense sadness weighs upon the features of a young mother, Om Karim (pseudonym), while talking about the death of her 11-year old autistic son, Karim, who died of natural causes a few days before meeting the investigator. She explains how she succeeded in taking care of four twins, three of whom were autistic, saying, “my late pregnancy was a gift from God... and I decided to do everything in my power to care for them.”

However, the interview did not last long as she collapsed upon recalling and showing the investigative team a recording of Karim’s experiences of physical abuse in a communication centre. Om Karim later apologised from carrying on with the interview.

A family friend gave us additional details about the incident that occurred at the end of August last year, after Om Karim noticed signs of physical abuse on her son’s body upon his return from the centre (which he visited for a year).  

Om Karim submitted a report of the incident to a court in Minya against the communication centre. The investigator obtained the report number and a copy of the video showing Karim struggling and in pain while his mother explained the details of the incident.

“Om Mustafa”, who lives in Alexandria, also faced difficulties in following the communication sessions and modifying the behavior of her son Mustafa. Although Mustafa is registered in one of the government schools in the primary stage, his communication sessions are not included in the medical services covered by health insurance for school students.

Dr. Fatima, an expert in education with over 20 years of experience in the field and a background in skills development (specifically with autistic people), confirms that one law for people with disabilities does not account for autistic children or the special provisions that suit their nature and needs, in comparison to those with mental or motor disabilities.

Although the aforementioned law provides provisions related to the integration of autistic children back into schools (based on an appropriate medical evaluation from a government hospital), it fails to provide regulations and penalties for those who subject a disabled person to physical abuse, according to Micheal Raouf a human rights lawyer at the Nadim Centre for the Prevention of Violence and Torture.

Silent Angels

A young mother, Mervat, explains the story of her son Marwan’s abuse and how she reported it to the authorities. Initially, Marwan would return from the communication centre in Damietta which he visited three times a week with a few red marks on his face and roughed up clothes. However, Mervat did not suspect foul play or physical abuse until Marwan returned one day (in October 2018) with visible scratches on his neck, torn clothes, and had a hysterical crying fit. That same day, Mervat rushed her son to the police department for a forensic doctor’s examination, based on which a report and complaint was prepared and submitted to the child emergency line.
"Marwan does not speak yet, even though he is five years old, and he used to cry constantly on his way to the communication centre, but I heard his silent complaint too late", says Mervat. Marwan was transferred to another centre while the aforementioned centre continues to receive cases of people with autism.

In another case, Ibtisam Maher withdrew a complaint on behalf of her autistic daughter, Maram, who was physically abused in yet another communication centre in the Minya Governorate. Maher refuses to name the communication centre and has decided not to pursue this further after reconciling with the centre’s administration.

We attempted to contact the child emergency helpline to obtain the number of complaints submitted by the families of autistic people regarding physical abuse in communication and rehabilitation centres, but the request was denied.

Hany Helal, Secretary-General of the Egyptian Coalition on Children’s Rights, an NGO, stated that since its establishment in 2012, the Supreme Council for Disability Affairs has become the most specialised in dealing with complaints of violations against disabled children, including autism.

According to Mohamed Mukhtar, Head of the Citizens Service Department at the National Council for Disability Affairs, the number of complaints regarding physical abuse (including abuse against those with autism), received by the Council has decreased. He indicated that the hotline only received four complaints about this issue last year, three of which were resolved.

Mukhtar believes that the lack of complaints is due to parental fear and lack of awareness. Further, Mukhtar assures us that the council is in constant coordination with the human rights sector of the Ministry of Interior to follow up on complaints about people with disabilities, but the role of the council ends once the case reaches the prosecution.

Governmental Alternatives

According to Egyptian law, a communication centre can only be licensed through two means. The first is through the Ministry of Health, where the applicant is required to be a member of the Medical Association, and where the facility’s role is prespecified. The second is through the Ministry of Social Solidarity, where NGOs establish nurseries for children with disabilities but with limited/basic responsibilities. This is only permissible if the goals and the activities of the nursery are prespecified and focused on caring for the disabled.

Through a random tour of 10 centres, we discovered that some nurseries bypass the licensing process by partnering with a speech therapist that provides weekly sessions; just as a number of physiotherapy centres and treatment centers do.

Nahla Ahmed, a psychological and educational therapist with a master's degree in the field of children with disabilities, attributed the existence of unauthorised centres to the lack of government alternatives focused on children with autism. This is further perpetuated by the absence of organised laws and trade unions for workers in the field of support professions.

It is worth noting that government agencies dealing with autism are represented in the Abbasid Hospital, the Child Centre at Ain Shams University, Alexandria University, the Institute of Hearing and Speech in Imbaba, and the Centre for Autistic People in Al-Matarah.
On the official website of the Ministry of Social Solidarity as well as the Ministry of Health, there is very limited information or resources available on dealing with autistic children, or the services provided by the ministries.

We reached out and recorded conversations with a variety of hotlines, specifically hotlines belonging to the Ministries of Solidarity and Health, and the Supreme Council for Disability Affairs, in order to verify whether a specific communication centre in Helwan was in possession of a license or not. Due to the ministries’ incompetence and lack of interest in the matter, the team was unable to confirm or negate the legitimacy of the communication centre.

Unauthorised Centres

During a tour of 10 communication and rehabilitation centres in Cairo, Alexandria, Minya and Ismailia, it became clear that there were a number of violations according to the legal processes and requirements of the Ministries of Solidarity and Health as well as other international standards which are similar in four other countries: Jordan, the United States of America, India and South Africa.
The tours relied on four indicators to evaluate the centres’ services, which included: the nature of the centre’s license (which must be completed by a speech-language doctor, or a phonics department graduate with a master’s degree), the declaration of the services provided and their financial compensation, the recording of sessions, and finally the presence of mothers during these sessions.

Six out of the 10 centres provided services without a license, in violation of Egyptian law. This included two physical therapy centres in El Manial and El Maasara, an addiction treatment centre in Helwan, two nurseries in Hadayek El Maadi and Alexandria, and a centre for human development training and administration in Minya.
The remaining four centres were legitimate according to Egyptian law, as they belong to well-known organisations. However, these centres are still in violation of international standards, specifically, those that stipulate that in establishing these centres, the license holder must be a doctor or hold a master's degree in the study of autism.
It was found that the four centres in which Zamzam, Muhammad, Marwan, and the deceased Karim were subjected to abuse, belong to NGOs. Two of the NGO-centres are subject to the Ministry of Solidarity’s decisions, but this was not enough to prevent misconduct and violations.

The Law’s Impact

In 2015, the Doctors Union raised some concerns and questions which were addressed to the Central Agency for Administrative Organisation. They aimed to clarify and compare the rights, differences and titles of a specialist that operates as a speech physician, and a therapist who operates in disciplines that are related to the speech profession.
The Union also appealed to the Ministry of Social Solidarity in order to suspend the permits for the establishment of nurseries and communication centres simply because they belong to well-known organisations, given that speech impediments are a medical specialty.

Dr.Ahmed Hussein, a member of the Medical Council, says that the Union is preparing a database on its website that enables citizens to review the licenses of different medical facilities. He adds that addiction or physiotherapy clinics operating in the field of speech therapy is a violation of the law and the facility’s specialisation, and that going to these clinics for speech development is the same as undertaking physical therapy treatment programmes under the supervision of a psychotherapist instead of a specialised physician.

The are two main causes for the increase in non-specialised and unqualified employees working in the communication centres. Firstly, there is an apparent shortage of qualified specialists outside of Cairo (such as Minya), and consequently, these governorates resort to hiring unqualified specialists. Secondly, for those that want to obtain the proper credentials and qualifications to work in the field of speech therapy, there are limited options and difficulty in obtaining accredited training. Hossam Mohamed, director of the Egyptian Centre for the Care of People with Special Needs, and a speech teacher at the Institute of Hearing Disabilities, confirms that governmental alternatives are inherently limited to the communication sessions provided by the university hospital.

According to Maha Al-Hilali, a member of the Supreme Council for Disability Affairs, and the mother of an autistic child, some centres resort to therapists that are unqualified or unspecialised, this includes graduates with a speech diploma from Ain Shams University, the Institute of Hearing and Speech, or the phonics department in the faculties of Alexandria Arts.

Sahar Al-Samahi, director of the Egyptian Society for Communication and Language Sciences in Alexandria, highlights the need for obtaining the appropriate license to practice the profession of communicating. Further, she supports the issuance of new laws to help regulate the profession, and to differentiate between a therapist with a short term certificate from training courses that do not exceed a few months, and graduates of phonics departments at the University Alexandria.

Director of the Egyptian Society for Communication Sciences

A quick search online shows a large number of private, unaccredited centres that offer courses in speech and behaviour modification, with prices ranging from E£1,500-5,000.

Upon contacting three of the private centres, it was confirmed by the course organisers that there are no conditions for joining these courses, which last from between one to three months.

On November 6, 2017, the Health Affairs Committee of the Egyptian Parliament held a meeting to discuss a bill submitted and proposed by Dr. Inas Abdel Halim, aimed at regulating the practice of speech pathology and speech rehabilitation. To date, the House of Representatives has not passed a bill regarding this matter.

Dr. Inas Abdel Halim has not commented on the matter, while Dr. Elizabeth Shoukry, a member of the Health Committee, stated that she does not have any information about the fate of the bill.

Finally, we reached out to the Ministries of Health and Solidarity on March 16, for their response and comments on the violations presented and demonstrated by this investigation, and to inquire about the measures taken by the ministries in light of these violations. However, neither the Ministry of Health nor the Ministry of Solidarity responded to our enquiries.