Thousands of parents look after children with severe disabilities. If these children are in homes, they would die early due to lack of care, but when raised by their parents, they survive and become adults. However, then the state's commitment to them ends and these children remain solely on the shoulders of their parents.
One of the hundreds of thousands of mothers in our country of an already grown child with disabilities is Diana Markova - a philosophy teacher at the Third Natural and Mathematical High School in Varna. What Diana and parents like her are fighting for, she told MyClinic.
Diana, when did you learn of your daughter's Cerebral Palsy (CP) diagnosis?
- Until the child was six months old, we were the happiest parents. Dorothea was a much-awaited, much-loved child. She was injured during the emergency polio vaccine in 1994. She was six months old when she received five shots - three from the regular dose and two from the emergency. He developed generalized muscular hypotension, became dehydrated. We did everything we could to get her back after that, but at one year and two months she was diagnosed with cerebral palsy. They found that there was some irreversible damage to the central brain.
Did someone help you, explain what needs to be done?
- I was lucky in that respect. There were years of changes in the legislation under the pressure of the European institutions and the upcoming inclusion of Bulgaria in the EU. Then the social services seemed to stop their silent refusal to disorient the parents and informed us quite thoroughly about the possibilities. I was in no hurry to switch to TELK, but practically the whole system is organized in such a way that without TELK you are deprived of all services.
We have been doing rehabilitation constantly. Even though my daughter is a late graduate, we did everything we could to make her fine motor. However, the psychic unlocking that we were waiting for so much did not happen. And since she was little, she went to kindergarten and school. First he was in a specialized kindergarten, then a year in an auxiliary school. We were then referred to a program for children with multiple disabilities at the Specialized School for Visually Impaired Children in Varna. We moved from Ruse to Varna, even though we had everything. And our friends were there, but we didn't have a school for our daughter. We did it so that she could be individually trained. The program for children with multiple disabilities is the sun for more severely disabled children from all over Northeast Bulgaria.
What happens to Dorothea after coming of age?
- Dorothea was in this school until June last year. They left it as a compromise for another year, because there they deal with the concept of mental age. But he turned 20 and had no chance to continue in school. Now we are looking for social services to continue what has been invested in it so far - the work of so many specialists. She has her own, albeit different development, but if she is not in a stimulating environment, everything will go to hell. That's the sad thing. Daycares are not made for parents, as some maliciously insinuate, a
are vital to our adult children
For children with multiple disabilities, there are still some services - educational and social, and their isolation is not so drastic. But the real nightmare comes when the child comes of age. The existing day care centers in large cities such as Varna have long been filled to capacity. They only work with people with mild mental retardation. The conditions there and the care are not adequate for the more severely disabled. It's not just that the premises are not wheelchair accessible. Things can't be solved just by putting up a ramp. In Bulgaria, at first, there is no understanding of the problem, there is no desire to remove the architectural barriers that prevent people with disabilities from enjoying their rights. No one thinks about the better quality of life of these people.
What is the problem with personal assistants?
- The National Personal Assistant Program has very high restrictive entry requirements. In practice, people like me who go to work cannot enter the program. In the movie "Hostage of their children", one of the families has a truck with which the husband earns his living. This family cannot get into the service because it does not meet the condition of BGN 65 per month per household member. Even these small social benefits - BGN 10-20 each for transport services, for the socialization and integration of children, are considered income, and if you receive them, you are already over the threshold and cannot enter a personal assistant program.
How have you been doing so far?
- Living with a child with cerebral palsy means a super organization in the wide family circle. Because I work as a teacher, my mother helps me during school hours. In the summer - my mother-in-law. My son who is 16 years old is getting involved as well. This is the most painful topic for me, which is completely ignored by the institutions: what happens to our he althy children? My son should not become a third parent, but in practice this is what happens. The state is doing nothing to provide any day services and my son will not inherit our problem. When they reach the age of majority, young people with disabilities start receiving a disability pension. More severe cases like my daughter
receive BGN 80 per companion
I am asking who should I give this 80 BGN to accompany the child?! Thus, they completely transfer the responsibility to the family. As parents, we fulfill our duties, but there is no partnership on the other side.
What if you are a single parent?
- It's even scarier as the coping capacity decreases. I know a mother who, in order to go to work, leaves her child for 11 hours with only her German shepherd.
These are terrible things. But I don't want to scare people. I'm just speaking from the position of a parent who has a child with a disability and is dealing with these issues on a daily basis.
In Wales, in addition to day care centers, they also have places for temporary accommodation that the family can use as planned during the year. For example, to be able to leave the child for two weeks. This is also done in a crisis in the family, when someone enters the hospital. So there is an alternative, because care for a person with disabilities is continuous, 24 hours a day. This is not only depressing and tiring, but also severely limits you in everything you do.
Do you really have a break in your life?
- Yes, I am fighting for it. But at the same time I enjoy all the hours I spend with my daughter. I don't think I'm being punished. Most parents do. We are normal people who have made a conscious choice to look after our children. I don't understand why the state doesn't want to lend us a hand. It is written on social networks that foster parents receive up to BGN 700 per month. Young people like ours, who have reached the age of majority, receive a pension of BGN 238. The difference is really big. And the parent receives nothing, although in many cases he cannot work and does not receive social security. I don't think we should be opposed to foster parents, because getting children out of institutions is a terribly important issue.
What are you fighting for now?
- We are now focused on exerting civil pressure to find new social services adequate for people with multiple disabilities. We are not just talking about a day care center, because it will accommodate twenty people. The number of those in need is much greater. In a city like Varna, there should be social services with a different profile and not a very large capacity.
Now they are closing many of the medico-social care homes. And there the base is fully adapted, very well maintained and these buildings can easily be adapted for day care centers for more severely disabled people.
