Will charities be able to stop their work, and when will they be no longer needed?
Charitable foundations, various “marathons of good deeds”, actions to support certain people or social campaigns have become a usual thing in everyday life. We react to this in different ways: some are monthly donating certain amounts from their salaries to charities, others leave money in special aid collection boxes – as a rule, for expensive surgeries for children, and still others prefer not to notice such campaigns and events.
In reality, the work of charities is much more serious and deeper than just fundraising for medical treatment or distribution of clothes to the needed people. As a rule, such organisations appear in those fields where the role of the state is minor or absent, while the problem becomes more and more massive. And the overall goal of charities, however strangely this, at first thought, sounds, – is their closure down. Closure down, indeed, as the problem has been resolved and aid rendered by the public, by philanthropists is not needed anymore.
Not in every instance establishers of charities do understand this. The founder of one of the first in Kazakhstan charitable foundations “Voluntary Society “Mercy” (DOM), Aruzhan Sain, admits: in 2006, when the Foundation was registered, no one had any plans for the long-term work. The very history of formation of the Foundation started from the people’s desire to help one sick child. The appeal for donations for medical treatment was published on the then popular fora, in mass media. Not only rank-and-file people but a range of companies responded. It is because of the companies, that it was necessary to engage in the legal formalization – an enterprise could not simply transfer a large amount of money to an account of a third physical person.
“The foundation was opened in some way out of necessity; we did not think we would continue. But then a request to help another child came, and another one… We have opened in April 2006, and we are 15 already. For these years, 2,016 children have got assistance, medical treatment, surgeries thanks exactly to the people who support our foundation,” told Sain.
The more requests for help they were receiving, the more the Foundation organisers were steeping in the problems and asked themselves – why our country has not got this. For example, Aruzhan recollects, from 2006 to 2012 the most frequent diagnosis, regarding which people turned for aid to philanthropists, was children’s congenital heart disorder.
“All over the world children with this diagnosis were operated on, and operations were performed at an early age, before one year old too. However here at home – none. And we sent children to various countries. The cost of surgeries was not very high – from 5 to 12 thousand dollars. We started investigating why such surgeries are not performed in Kazakhstan. So we got acquainted with Yury Pya, who actually became a founder, creator of neonatal cardiac surgery in Kazakhstan. In our first meeting, we even had a row with him,” Aruzhan Sain shared her memories. “He appointed and then postponed an operation on a child several times. We began to talk with him, and it turned out that he simply had no high-quality consumables, there were no surgical instruments that are used in children’s operations. It turned out that even then every three months he submitted projects to the Ministry of Health specifically for the development of neonatal cardiac surgery, but they were not backed up.”
Some progress in resolving this issue was made only in 2010 when the charity representatives were received by the President of the country and briefed him on the problem. After the head of the state gave instructions, both support and projects were found. Yury Pya was appointed as director of the National Cardiac Surgery Research Centre, then being under construction, where they started operating on infants from 2012. Currently, little children who were born with the heart disorder are successfully operated on in Kazakhstan.
This is not the only diagnosis that the “Voluntary Society “Mercy” Foundation can take a slice of credit for dealing with. The country is developing children’s neurosurgery for the “infantile cerebral palsy” diagnosis: a technology for the operation called “selective dorsal rhizotomy” has been successfully introduced, which allows to remove limb spasticity in children. The medical sector of successful treatment and implementation of new technologies and operations for ENT diseases is gaining momentum. These diagnoses include papillomatosis of the larynx, cicatrical stenosis (including that after burns of the larynx with caustic liquids), laryngotracheal stenosis, non-cancerous laryngeal formations. The Foundation provides assistance in this field in another important aspect – sending doctors for training and organizing master classes of foreign specialists.
Another large-scale project also grew from a small private assistance to orphanages. In 2006, almost 20 thousand children lived in orphanages in Kazakhstan. Several foundations – “Voluntary Society “Mercy”, “Dara”, “Ayala” began work on the “Kazakhstan without orphans” project. The most essential thing in this work was modification of legislation as the laws in effect at that period created serious restrictions – in essence, they built a barrier between adoptive parents and children.
“We revealed moments which hinder adoption, developed proposals, brought them to the parliament. Obviously, no one wanted to listen to us. It took an instruction from the President, and the amendments were adopted only in 2012. However even then one very important amendment did not pass. We were striving for transparency of the system of registration of children left without parental care. Then records of such children were kept simply in a logbook. And we demanded to create a unified state data bank of children – a transparent information system. There have already been such banks all over the world. We achieved the adoption of these amendments on the databank only in 2016. Cannot say that it works the way we wanted it to work, and it’s not done the way we wanted it to. But the main result of our work is that now there are about 4 thousand children left without parental care in orphanages, baby homes and foster homes in the country,” says Aruzhan Sain.
However, this work has not been completed yet. Sain explains: now she, already using the mandate of the Ombudsman for the Rights of Children, is trying to influence the work of this databank to be rebuilt so that there are no loopholes in the system for corruption and child trafficking. So far, they do exist. It was the ombudsman for children who already received an appeal from the adoptive parents, from whom a bribe was demanded for them to be included in the “Search for a Child” system. Law enforcement agencies intervened in the situation and caught a guardianship officer and an intermediary red-handed, and a trial has already taken place.
The DOM Foundation is, of course, not the only one in Kazakhstan. Bulat Utemuratov’s Foundation was established in 2014. The mission of this Foundation is designated as: “To help Kazakhstan become a better place for people’s life today and in the future by promoting health, education and culture development.” Today, the Foundation is implementing 11 different projects, and, as its head Marat Aitmagambetov admits, the founder set the task exactly like this: to help solve problems where the state cannot yet cover the sector with its attention.
None of the Foundation’s projects can be called fully completed yet. For example, the “Aid Card” project was launched in 2018 – then, within a month, the Foundation, together with the Red Crescent of Kazakhstan, provided aid to residents whose houses were partially destroyed or suffered from floods in the East Kazakhstan Oblast. Victims received ForteBank aid cards, to which funds were transferred at the rate of 30,000 tenge per person. In 2019, under the same scheme, aid was provided to flood-affected families of the North Kazakhstan and Akmola Oblasts. In 2020, aid was received by flood-affected residents of the village of Karamyrza in the Kostanay Oblast and suburban districts of Petropavlovsk in the North Kazakhstan Oblast, and in 2021 aid was needed for residents of the Ridder town in the East Kazakhstan Oblast, whose houses burned down in a fire on 10 May. In total, within the framework of this project, assistance was rendered to 9,196 citizens for a total amount of about 360 million tenge.
One of the most famous throughout the country projects of the Foundation is the “Autism. One World for All” programme within the framework of which the Assyl Miras autism centres are being established. Currently the centres operate in several cities of the country, over 9 thousand children with autism spectrum disorders (ASD) are registered with these centres.
“When we carried out the analysis, we realized that the problem exists not only in Kazakhstan, but all over the world, and all countries are trying to solve it in their own way. In Kazakhstan, at that time, there was and still exists an old approach: specialists who worked with autism spectrum disorders considered them as a psychiatric problem. Accordingly, the methods of rehabilitation were used through the prism of psychiatric care. We proposed a different approach. Such people exist and they will be existing, and we need to learn to live with this, which means that alternative methods and approaches are needed.
“We turned to Western experience, to a greater extent to American institutions that have been dealing with this problem since the 50s of the last century. The main thing in their approach is special children, and they require a special approach, which we use. There is a Jasper program developed by specialists from the University of California, whom we actively cooperate with, they train our specialists. This approach is aimed at non-speaking children. The effectiveness of this technique is so high that after 3 months 80% of children who are involved in this programme begin to speak. This is a very high rate,” said the Foundation Director, Marat Aitmagambetov.
Now the programme starts, one might say, a new stage. The methods used have proved their effectiveness, and since the spring of 2021, the Assyl Miras centres have been singled out as a special type of organisations by the order of the Minister of Education and Science, and the state, represented by local executive bodies, is already accepting them into their ownership. And the Foundation will continue to supervise them in terms of the methods used.
“The state takes on all operating costs, pays salaries to specialists, rentals and utilities. But we shall retain all the informational, methodological, training part, and we will continue to train specialists. Moreover, specialists in our centres are already prepared to train specialists in other state institutions,” emphasized Aitmagambetov.
The issue of complete withdrawal of the Foundation from this project is not even discussed yet.
The Association of Parents of Disabled Children (ARDI) is not a charitable foundation, it is a non-governmental organisation created back in 1991 by the parents raising children with disabilities themselves. The desire to help children became the unifying one.
“The first issue, of course, was that at that time there was no talk about such children. We did not see, did not hear, did not know that there was a sufficiently large number of children with special needs. There were no rehabilitation centres, no one heard about inclusion. Therefore, the issue of high-quality rehabilitation was in the first place,” noted ARDI chair Assiya Akhtanova.
The Association worked “on all fronts” – with government agencies, parliament members. Charitable foundations also came to assist – DOM, Bulat Utemuratov’s Foundation, “Positive Umit” and other organisations, charitable and commercial. With their support, over the years, the Centre of Creative and Physical Development for Disabled Children and Youth, the Centre of Intensive Rehabilitation and Early Intervention for Children with Cerebral Palsy were opened and continue to operate. Now ARDI takes care of 745 families raising children with disabilities, where 370 children move in wheelchairs.
Assiya Akhtanova notes that over the years the NGO has been able to resolve many issues. This is provision of auxiliary devices, and provision of wheelchairs, development of rehabilitation now at the state level, creation of a legislative framework, and much more. One of the major achievements is the emergence of the concept of “inclusion”, and not just in words, but in legislation.
“Of course, real, full-fledged inclusion is still very far away,” the head of ARDI stated. “So far many limit their efforts to creating a separate correctional room, they hire a school psychologist, for example. This, of course, is not enough. But we have a serious problem with staff, there are very few specialists – rehabilitation therapists, psychologists… So, there is still a lot of work to be done. “
So far, all charities continue their work, develop the launched projects, reveal more and more new problems that remain out of the sight of the state. No one is thinking about winding up their work because of the final resolution of a problem. “This would be great,” laughs Assiya Akhtanova. “But, unfortunately, there is no such danger for us yet.”