We spoke with Małgorzata Wokacz-Zaborowska, representative of Autism-Poland Association at Autism-Europe. Members of this association are helping children and adults with autism and their families to integrate into the country after having travelled thousands of kilometres in seeking refuge. This interview was made possible thanks to Autism Europe.
Question: We know the difficulty of communication in general, but in this war situation how is the best way to communicate to autistic children (both Ukrainian and Polish) what is happening?
Answer: Here in Poland the stories, comments, pictures of war are now unavoidable. Our children meet new collegues at schools, in kindergartens and in other places. They experience new language, new names, even new music. We need to communicate it in a proper way by adapting to the capabilities of our children so they may understand it. My son, who is an autistic person, is 12 years old. When the crisis started, he seemed interested, a bit worried, but also confused since he did not know how to ask a question. So we discussed the situation using very simple massages, showing a map and explaining what a war is in general, but at the same time caring for his sense of security. We avoid watching TV and discussing the situation with other adults when he is around. Many parents struggle with communicating this war situation to children with autism, specially when a child is not verbal, so they often turn to a specialist for help. We all need to learn how to communicate it properly.
Question: When you receive autistic people and their families at the border, what is the integration process like? How do you do that first needs assessment? and how do they arrive?
Answer: First of all I need to point out that there is no one social support system for the refugees with special needs, functioning in Poland. The situation was unexpected and surprised us all, so starting from the very first days there were more and more volunteers and NGOs involved, located close to the Polish border with Ukraine so as to help as soon and as much as possible. At the same time some organizations started to communicate and coordinate the efforts of various organisations involved in helping Ukrainian families with persons with ASD and their families. That is what we did in the Autism-Poland Association that unites 30 organizations from all over Poland that are acting for the benefit of autistic children and adults and their families. We have been gathering information from our members referring to what are they doing, how are they helping, what are their capacities in this regard. We have been constantly updating that list. Then we shared information with other organizations in Poland and abroad, first of all with Autism-Europe and its members, We also shared it in the social media including various FB groups, so that it may reach volunteers, activists and also directly people searching for help.
In each case when we help Ukrainians, we first need to meet basic needs that are accommodation, food and safety. Then we may think of defining and meeting special needs. We have been facing problems with finding proper accommodation, since the collective shelters are not appropriate for people with special needs. People arrive by trains, buses or cars, some of them come on foot to the border after walking for many days. Some of them change to another means of transport at the border. Some are more independent, have relatives or friends here, some try to find right place on their own, but many of them need assistance even starting with evacuation. Some people come with no luggage, they just escaped their house with empty hands, no documents, no money, not mentioning any medical files. There are some organizations and volunteers in Poland that are coordinating the whole way of evacuation of individuals, cooperating with Ukrainian partners. But the needs are enormous, transport conditions are difficult and thus many people with disabilities are still waiting for a chance to leave Ukraine.
One aspect should be emphasized here, there is no efficient social welfare system, fully covering all needs of people with disabilities in Poland. There are many Poles with disabilities waiting for an appropriate support, some waiting for many years. So the situation when there are thousands of people with special needs arriving in Poland, puts us all in a difficult situation. Nevertheless we all are open to help as much as possible and to share what we have in here. Sometimes it is not much but it may mean a lot for others.
Question: What kind of support can you provide and what are the main challenges you face at the moment?
Answer: There are various types of support services we are providing within Autism-Poland Association organizations and each member, according to its own possibilities, is offering support in diffrent areas like e.g. material assistance, accommodation, translation services, education, daily classes for children, therapy, including trauma therapy, integration classes, language classes, consultation and help in searching for e.g. school or kindergarten, respite care, support in finding employment for both people with ASD and their caregivers, leisure activities, providing legal aid, support in completing formalities in administration offices and other institutions, support in obtaining recognition of certificate of disability, sharing space for integration meetings with other families with persons with ASD – both Ukrainian and Polish, and others.
However you must know, that these efforts are underway with an enormous help from volunteers and our employees working often after hours. And what is important – it is not enough, because the needs are immense. Therefore the main challenges right now are insufficient funding, shortage of many resources like infrastructure, housing area, moreover staff limitations. It is unfortunately not possible to provide each person with ASD with appropriate regular therapeutic activities, specially adults, in specialized institutions, meeting their specific needs, since many people with ASD themselves in Poland do not have their needs met as they should. We need to develop the infrastructure and create new branches of our organizations, employ more specialists, more social workers who speak both Polish and Ukrainian, some also Russian since there are people from Ukraine only Russian speaking.
Question: How are you helping children and their families to escape from Ukraine? How the journey look like?
Autism-Poland Association organizations are focused on supporting people with ASD and their families when they already arrived in Poland.
Question: Besides the basic needs, what are the main challenges you are identifying for them?
Answer: The main challenges are providing children and adults with regular therapuetic services, including trauma therapy (also for their families and caregivers). Language barrier is another problem, though Polish and Ukrainian may seem similar, it is a diffrent alphabet etc., it may be a serious difficulty when searching for a job or filling in documents. Another challenge is organizing support services for children and adults with ASD so that their parents / caregivers may go to work or remain coverd by respite care.
Question: Do you cooperate with other organisations of people with disabilies in Poland/abroad?
Answer: We cooperate closely within Autism-Poland Association that unites 30 organizations from all over Poland. Moreover we also cooperate with other NGOs that are involved in supporting people with disabilities in our country and Ukrainian families as well, both on local and country levels. We are also cooperating with Autism-Europe so as to share information and experiences with other member organizations.
Question: How can we help autistic children and their families?
We can help in various ways – first of all supporting financially organizations that are based in Ukraine and are supporting people with ASD and their families. These organizations are centers for autism services and also organizations that support evacuation etc. Sometimes they need material assistance like some special equipment or products, so there is a need to organize collection and transfer. We may also donate for organizations in countries that are supporting Ukrainian people with ASD and their families, like many in Poland. Everyone can also raise awareness and advocate in its country and urge his/her government to support people with ASD and their families by donating for organizations or by creating safe conditions for living and therapy for these people in their countries. In Europe we certainly need strong advocacy voice in EU institutions.
Question: How do you feel about the current situation?
Answer: Almost 3 million people from Ukraine have arrived in Poland since February 24. The current situation is still very unstable. Currently we are facing a reduced influx of refugees, but it may change within 24 hours depanding on the war situation. There are some people who decided to come back to Ukraine, but not many. We are still expecting more people to come.
Most of the response thus far has been to provide immediate help, but we urgently need to begin thinking long-term. It is like moving from the crisis mode into management mode, which would be a huge challenge.
Question: How many people do you estimate you are helping in Poland at the moment?
Answer: We do not have any data available now, maybe in coming months when people are registered in the social system in Poland it would be possible to give some specific data. Also in our organizations in Autism-Poland Association we haven’t been gathering that data so far, but we may when we could catch our breath.
Question: What would you ask of the national and international institutions and all stakeholders involved in terms of support?
Answer: Marian Turski, Polish historian and journalist, former prisoner of Auschwitz, said that there is the XI Commandment: „Do not be indifferent” (XI Thou shalt not be indifferent). His most important message remains to always act with decency: to remember history, which repeats itself, and never to be indifferent.
We need solidarity, specially in Europe. We cannot leave Ukrainian people behind, particularly those vulnerable, like people with ASD and their families. Everyone can help to the best of his/her abilities. We urgently need financial support – for both Ukrainian organizations providing help at spot and for NGOs operating in other countries where people are relocated. We need to ensure that appropriate standards and human rights are respected. We need proper coordination and further development and strengthening of the assistance system within EU. We cannot be indiffrent.
About the author
Małgorzata Wokacz-Zaborowska, representative of Autism-Poland Association at Autism-Europe. She is a member and an activist of the civic initiative “We want the whole life!” advocating for rights of people with disabilities and their families in Poland. Member of the board of the Association for Assisting People with Autism located in Gdansk. Mother of a wonderful 12-years-old boy with autism.