Parents of children with disabilities suggest caring be recognised as employment in a social service
After the State Duma rejected the law on increasing the allowance for parents caring for children with disabilities, the community have decided to make new attempts to improve the legislation.
The authors of the petition for increasing the allowance did not find the support of lawmakers. As the community leader, the organiser of the movement “Raise the LOU allowance”, Svetlana Shtarkova, told an ASI correspondent, the deputies made the decision not to approve the draft law on its first reading for two reasons.
“There is Presidential Decree No. 175 from 2013, which divides all carers looking after people with disabilities into three groups: parents and guardians of children with first group disabilities since childhood; non-parents of children with first group disabilities since childhood; and those caring for people with disabilities and the elderly”, Svetlana explained. “The first group receives 5500 roubles, and all the rest – 1200 roubles. The draft law proposed to increase benefits just for the first group – parents and guardians – to 12,000 roubles. The government and the relevant State Duma committee reasonably noted that upon increasing the allowance of one of the groups, the difference between the rest of the groups in terms of the amount of allowance would be 10 times greater, which would be unfair.”
According to her, the authors of the initiative had hoped that if the concept of the problem was set out in the draft law, this shortcoming would be corrected in the second reading. And the allowance would be increased for all three groups, but the deputies decided to reject the proposal immediately on the first reading.
“The second reason is that the federal budget was approved on 21 November and the money to implement the draft law was not budgeted for. Although the draft law itself had been lying in the Duma since last February and was due to be reviewed since May. Before that it just didn’t make it to the front of the queue, although it was in the minutes of sessions at least 15 times before the budget was reviewed. We had a chance that the draft law would be reviewed before the budget was approved”, said the community leader.
“Over the course of the year, we did everything we could: there were articles in newspapers, features on TV and radio. We did a flash mob and tried to contact the president directly in May. On 3 December, there were rallies and pickets in 16 towns.”
In the new year, families caring for children with disabilities decided to change the concept and to look at the problem from a different angle.
“We are considered, de jure, by the state as unemployed, that is why we receive such a small allowance, lower than the minimum monthly wage. As a result, the parenting community has decided that the state must recognise us as working,” Svetlana Shtarkova said. “Because caring for a person with a disability is tough mental and physical work, 24 hours a day, 365 days a year. So far, our right to long-term care in the home has not been recognised. This care is provided only in residential conditions: for children in care homes and for adults in psychiatric facilities. Staff at these institutions receive a salary for this, for the same amount of work which we do at home. So they work, but we at home do not work, although we are doing the exact same thing.”
Changing this situation is possible, simply by recognising that such care also takes place in the home. If this is recognised by the state as a social service, then, accordingly, individuals caring for people with disabilities in the home will be considered as employed. And this means they should be paid no less than the minimum wage.
A similar initiative was discussed regarding the law on palliative care which was adopted on the first reading the day before, one of the initiators of which was the hospice foundation, Vera. As the expert believes, this is a first step towards the state recognising people who care for the elderly or relatives with disabilities as working.