The high cost of services and medicines needed by autistic individuals and their families, combined with the lack of insurance coverage and government support, has caused many families in Iran to stop therapy for their autistic children and to be unable to afford needed medications and services.
This situation represents a violation of the state’s responsibility to provide needed health and medical services on an equal basis to all its citizens.
Maryam has two autistic sons. Speaking to the Center for Human Rights in Iran (CHRI) about available educational and rehabilitation services for her children, she said: “We have to pay 65,000 tomans ($15.43 USD) per hour for occupational therapy and, because of the high cost, my sons are not going to occupational and speech therapy classes anymore.”
“My sons have a lot of energy and because of that, the doctor recommended that they should attend classes with a lot of physical activity. Unfortunately, we were only able to pay for just some of the costs, so we had to stop the speech and occupational therapy classes in order to afford the sports classes.”
Maryam added: “My husband works two shifts a day, even on weekends, in order to afford the heavy cost of taking care of our two children. I am their full-time caregiver. Taking care of two autistic kids is really hard. In Iran, there is no specific agency in charge of taking care of the affairs of people with autism.”
On January 9, 2019, Mehdi Shadnoush, the Health Ministry’s director for disease control, acknowledgedthe problems facing autistic people.
“We are implementing significant programs in the schools for special children and through the State Welfare Organization (SWO) but in reality, the main reason we have not had success in dealing with this illness is that we have not had a comprehensive plan to respond to this community’s needs,” Shadnoush said.
Only Small Percentage of Iran’s Autistic People Are Receiving State Services
There are differing estimates on the number of autistic individuals in Iran, which range from 320,000 to 700,000. However, only about 8,000 of them have been officially recognized and registered by the SWO.
On February 28, 2018, Hossein Nahvinejad, the SWO’s director for rehabilitation services, admitted that the organization’s staff was insufficiently trained in recognizing and working with autistic people and added that there is a need to institute and conduct standardized tests to diagnose autistic children.
Statements by Iran’s health officials indicate that only a small portion of the country’s autistic individuals receive state support. According to Nahvinejad, 3,000 autistic children receive the SWO’s rehabilitation services and 3,000 others are attending schools for special children.
People with autism need four essential services at a very young age: Occupational, speech and psychological therapy for the child and counseling for the family, which comes to an average monthly cost in Iran of three million tomans ($712 USD). This figure is unaffordable for most families in Iran.
An autistic child needs several years of education and occupational and speech therapy classes involving a team of experts. But the government has not provided support to meet the costs associated with these needs, leaving the families on their own to cover the expenses.
Government’s New Plan Falls Well Short of Autistic Families’ Needs
On January 8, 2019, Shadnoush announced that the government has approved a plan to provide assistance to 4,000 autistic people through 62 designated centers in the country.
“There will be four kinds of experts specializing in occupational therapy, speech therapy, psychology and counseling stationed in these centers under the auspices of the medical science universities in each geographical region in order to supervise the services provided to the children.”
The Health Ministry official continued: “The ministry will allocate one million tomans ($237 USD) to subsidize these services. The new plan has been communicated and we are currently signing contracts with the participating centers to enforce it.”
However, even if this government support reaches the families of autistic individuals, it will not sufficiently cover all the expenses. In addition, in August 2017, Sina Tavakkoli, the Iran Autism Association director in charge of rehabilitation, noted that insurance did not cover rehabilitation costs.
He added that autistic individuals need “occupational therapy, speech therapy, behavioral therapy and psychological treatments such as art therapy, music therapy and theater therapy,” none of which are covered by insurance providers in Iran. In addition, there is the high cost of medications which middle class and lower income families find difficult or impossible to purchase.
Criticizing the state’s inadequate help for autistic children, Maryam, the mother of the two autistic sons told CHRI: “In Iran the Health Ministry does not provide any particular help in terms of medical services or medication. Neither does the SWO. Plus, the public has very little awareness about autism and as a result our kids face problems in the special schools, in the doctors’ offices and public areas.”
Autism: A Disability that Iran’s Health Ministry Incorrectly Categorizes as a Disease
One of the problems facing autistic people is that there is no specific authority in charge of meeting their needs. The SWO recognizes autism as a form of disability and issues disability ID cards to them but Iran’s health ministry categorizes them under “special illnesses.”
Criticizing the designation of autism as a form of illness, Ehsan Abedi, a journalist and researcher in the field of autism, told CHRI: “Based on the international definition, autism is a kind of disability, not an illness. Autism does not have a specific treatment. An autistic person is just different and needs training. What is needed is education, not medication. Branding it a disease recalls how the medical field used to look at disabilities. Since the passage of the UN Convention on the Rights of Persons with Disabilities that kind of thinking has no place in today’s world; it has been replaced with a humanitarian perspective.”
Abedi added: “We recognize that the designation of autism as a special disease, along with hemophilia and AIDS, could mean that the Health Ministry would cover the cost of medications, and that is in the interest of the families. But it perpetuates the stereotypical view of autism and that contradicts the normalization of disabilities. When we label someone as a ‘special patient’ how can we expect society to accept her/him as one of its members without prejudice?”
According to this researcher, “The best way to go forward is to introduce autism to society as a disability and a variation in the nervous system while at the same time provide them with necessary services and facilities such as sufficient insurance coverage and assistance to cover their rehabilitation expenses.”