Lack of Personal Assistants to Facilitate Independent Living
While family members play important roles in the lives of many people with disabilities in Iran, under the CRPD, people with disabilities should have access to a range of in-home, residential, and other community support. This support includes personal assistance necessary to support living and inclusion in the community and to prevent isolation or segregation from the community.
None of the persons with disabilities interviewed for this report benefited from professional personal assistance (PA). A personal assistant is an individual supporting a person with a disability in different aspects of daily life – such as personal care, household tasks, assistance at school, university or the workplace, driving, interpretation, and other tasks customized to the individual. For the most part persons with disabilities we interviewed who needed assistance in fulfilling their most basic needs—including eating, getting dressed, or daily hygiene—relied solely on the help of family members or close friends.
The SWO does not provide personal assistance or sufficient financial support for people with disabilities to hire personal assistants. It provides a “nursing allowance” only to people who have spinal cord injuries (roughly 19,000 persons) and not to people with other types of disabilities. According to some advocates with disabilities this distinction is based on the incorrect assumption that persons with spinal cord injuries face more support needs than others due to lack of control over urinating and defecating. As one advocate with a physical disability stated, “Instead of adopting a needs-based approach to allocating resources, the SWO relies exclusively on a medical diagnosis.”
Najmeh, mother of Shabnam (a 9-year-old girl with physical disabilities), explained that she did not receive a nursing allowance or other financial support because her daughter did not have a spinal cord injury:
I really can’t understand the difference. I am with my daughter everywhere: at school, in the streets, in the bathroom, in her bedroom… I hardly find time for my other child or for myself. But we are not eligible for a nursing allowance just because Shabnam’s condition is not caused by a spinal cord injury. If this is not daily care, then what is this?
Fatemeh, a woman with a physical disability, explained,
Different groups have different needs. For example, I have muscular dystrophy, which causes respiration issues for me. I really need someone in my home to help in case of an emergency. But I live alone. This is a life or death issue.
Even for those who receive the benefit, the amount is far from being sufficient to hire a personal assistant for the hours needed. The monthly amount paid in 2017, for example, varied between 1.5 million IrI ($39.89) and 2 million IrI ($53.19) based on the “diagnosed severity of the spinal injury.” The official rate for six hours of nursing services is 170,000 Irl ($4.52). At this rate, 12 hours of support per day would cost 2.38 million Irl ($63.30) per week. According to some people with disabilities interviewed, the rate for personal assistants hired in the actual market was between 10 and 20 million IrI ($265.95 to $531.91) per month, depending on the place of residence and level of support needed, or more than 10 times the government nursing allowance and well above the official government rate.
Those who received the official nursing allowance still also rely on family care. Yashar, a man with a physical disability said: “I have no income or job. The amount of the nursing allowance is not sufficient to hire a personal assistant. So, for example, my brother comes to help me with bathing once a week. If he cannot make it, the only solution is to pay 500,000 Iri ($13.30) to a neighbor to help me bathe.”
Relying on family members as the sole source for personal care can impose limitations on the independence of many persons with disabilities. Tahereh, a woman with multiple physical disabilities whose attempts to hire a reliable personal assistant have failed, relies on occasional assistance by her son and some relatives or friends:
I need help to prepare my food and eat and drink. Unfortunately, my son is not always happy to help me. Sometimes I need to wait until 3:00 p.m.to get some breakfast. I have developed a chronic stomach problem because of eating irregularly.
Tahereh is also not able to change her urinal catheter once a week as prescribed. “Sometimes I can do this every other week and even later,” she said. “I just have to wait until my son is willing to help or someone comes to visit. I have had urinary infections because of these delays.”
Nader, a man with physical disabilities also explained how he developed a new disability due to the lack of access to a professional personal assistant. He explained, “I need to use a urinal catheter, but for a lot [of the time] that there is no one around to help me [change it]. Once I tried to do it on my own, but I injured myself seriously because my hands are also weak. After that injury, I cannot use catheters anymore and have to go through a much more difficult and painful process for relieving myself.”
In many cases, parents supporting people with disabilities may be older, have health issues, or may not be physically capable of fully supporting another adult. For example, Hassan is a 27-year-old man with muscular dystrophy. He said that since he can barely use his hands, he needs personal assistance all the time. He said,
I fully rely on my mom to help with all my basic issues. I need to be moved from one side to the other during the night, but I don’t want to wake my mom up. So, I keep suffering but don’t call her.
Alireza, a 22-year-old man with cerebral palsy, relies on his 65-year-old mother for basic care. He said, “I’m very heavy (almost 90 kilograms). So, it’s very difficult for my mom to help me use the toilet, wash, and get dressed.” After years of helping him, Alireza’s mother has developed serious back pain. Although Alireza likes to go out, meet friends, and exercise, his ability to do so depends on how his mother feels each day and whether she can help him get ready.