Problems for parents of children with mental disabilities
“We need shared custody”: how children with disabilities can thrive in society
Why do we need to adopt the law on shared custody as soon as possible, what should be changed in inclusive education, and why is it important to listen to the parent community?
The Centre for Therapeutic Pedagogy (CTP) organised a press lunch with parents of children with mental disabilities for the first time.
“In the West, self-advocation is very common. We want the parents in our community to feel comfortable voicing their concerns publicly”, says the CTP’s chairman Anna Bitova.
Education, communication with peers, and the law on shared custody are among the most pressing issues.
The main task of the bill on shared custody is to reduce the number of cases which see people with mental disabilities ending up in neuropsychiatric care homes, including after the loss of a guardian.
In the four years since the bill passed its first reading in the State Duma, there have been significant changes.
Initially, it was planned that a person with a mental disability could have several guardians, and these could be both individual and legal entities. However, the draft law has not yet passed its second reading, so the loss of a guardian means an adult is still sent to a neuropsychiatric care home. The director of the care home thus becomes the sole guardian. As a result, NGOs are restricted in their rights, and the psychiatric are homes retain their monopoly.
“I’m worried about what will happen with my child when I’m no longer around. I want to be sure he won’t end up in a care homel. This is why we need shared custody. Children with disabilities are particularly vulnerable. When they lose their parents, they lose their support network, and the mountain of work put in by educators ends up being for nothing,” explains Marina Ivanova, a mother of a child with a developmental disability.
The only way to avoid having your child sent to a care home is by putting them in the custody of a relative or acquaintance. The safety of the child and their standard of living, however, depends solely on the conscience of the new guardian.
“I knew a woman who was dying of cancer,” recounts Irina Balashova, the guardian of 29-year-old Aleksandr. “She gave a friend both custody of her child and the rights to her apartment, but it turns out that she simply took the son to a care home. She then banned anyone from visiting him. As the sole guardian, she was completely within her rights to do so. At some point, it seems the son just disappeared.”
It remains unclear when the bill will pass its second reading. There is also the question of who will be in control of shared custody.
Problems in Schools
8% of Russian schools were prepared for inclusive education in 2020.
According to the Federal Law on Education, all children in Russia have the right to education, regardless of health conditions. However, children with mental disabilities still encounter problems while at school.
Rada is in the fourth grade of an inclusive school. She attends half of her lessons with her classmates, while the remainder of her classes are one-on-one sessions with a personal tutor. The main problem though, explains Rada’s mother Tatiana Myanchinskaya, is the lack of an individual approach.
“When I ask the school to give my daughter an extra hour of maths tuition, they reply that the schedule only allows for two hours of maths a week. Alongside this, the school rarely meets its deadlines. This year the individual development programme wasn’t prepared until the beginning of October.”
When a child with mental disabilities attends school, an individual teaching programme is drawn up. There are many variations, and not all programmes have textbooks. Rada’s teachers have to manually print out assignments for her.
12-year-old Vera has Down’s Syndrome and is currently in secondary school. While her classmates are generally very accepting, her mother Daria Bolokhontseva says her daughter is still lonely.
“Vera wants to make friends, to hang out, to go the cinema, but she doesn’t have that opportunity, and continues to be treated like a small child. Where can I find people who will take my daughter seriously?” asks Bolokhontseva.
Parents want to emphasise that not all teachers understand how to care for children with mental disabilities. In most cases, the bulk of the work falls on the shoulders of the tutor, but often this isn’t enough.
Difficulties Outside School
Parents of children with developmental disabilities also want to make clear that their children find it difficult to partake in sporting activities. Though there are some inclusive sports where children of mixed abilities can play together, some children require a more individual approach.
13-year-old Marusia has Williams Syndrome, a rare genetic disorder characterised by delays in mental development, while still maintaining other intellectual capabilities. At the moment she attends school, but her mother Veronika Grigorieva is unsure what Marusia will do after she graduates.
Currently, there are very few vacancies or jobs in communication. Many adults find themselves either working in ceramic workshops or packing items, but these are just day jobs. Fully-fledged career paths are still limited, and it remains an issue that needs to be resolved.
The discussion related to these concerns will continue on December 11 at the Public Chamber of the Russian Federation, where the Centre for Therapeutic Pedagogy will hold a round table.