This lecture focuses on the biggest problems in care for children and adults with disabilities in Poland, the obstacles their families must conquer and the role of non-governmental organizations in creating and implementing solutions which help to prevent social alienation of this group of people.

Although in the past 20 years a lot has been done in Poland for people with disabilities, they are still being discriminated in many areas of life.

The main reason for marginalization of this social group is the lack of system solutions which would include the entire scope of matters regarding the disabled people living in Poland.

The treatment of children is still based on an out-dated medical model, in which the disabled child is perceived as patient i.e. a passive object which undergoes treatment in a given medical centre. The treatment is temporary, periodical often without any short or long-term treatment plan. This often forces parents to resort to the so-called health tourism.

Also in the field of education there is a lot of room for improvement. In nurseries and kindergartens located in cities only 1% of enlisted children are those with disabilities. In the countryside this percentage is even lower and amounts to 0.5%, whereas for example in Finland it’s 85%. Only 30% of Polish schools have no architectural barriers. Every year more and more children are enrolled in mixed abilities schools, however the technical side of both teaching and rehabilitation process, as well as specialized care leave much to be desired. In Poland there are no life planning program for the disabled people, such as the American Transition program.

The scope of social welfare and financial support is incommensurate with the needs and costs each family has to bear. Lack of institutionalized forms of aid (nurseries, kindergartens, daycare centers), lack of support in looking after the child at home (the help of personal assistant), unregulated legislation make it difficult for the family to function properly, forcing parents to sacrifice their career, free time, social life.

Young adults with disabilities are also socially marginalized and left to face and cope with the problems of adulthood by themselves. They have to deal with issues such as: education, employment, independent living, relationships, procreation and so on.

As regards education 70% of these people have only primary education, 20% post-secondary education, 6,7% secondary education and only 4.3% have higher education, whereas the numbers corresponding to their able-bodied peers are: 52%, 23%, 10,2%, 14% respectively.

The rate of employment of disabled people in Poland is 20% whereas in the Western countries it’s 50% and in the USA – 70%. In Poland 84% of handicapped people subsist on allowance. Only 8% earn a living. Their income is also very low, social pension is, attendance allowance amounts to and they can make only so as not to lose their social benefits.

Young adults with disabilities have similar desires to those of their able-bodied peers. They too would like to move out and start living on their own. Unfortunately in Poland there are no institutionalized forms of supported housing (small group family-type homes, supported flats), 90% of them live with their parents, only 4% live on their own and the rest is put in nursing homes.

Relationships are another aspect of adulthood but the sexuality of handicapped people is still treated in Poland as taboo and young adults are left to their own devices, and yet they manage to forge relationships, get married and have children.

After 1989 many non-governmental organizations were established in Poland as a form of opposition to the surrounding reality and as answer to the needs of the disabled people and their families unfulfilled by the state. The non-profit organizations play a very important part in the fight against discrimination. It is said that they are established when the state cannot cope with existing social problems and that is the truth, because: 1. They solve difficult social problems and their solutions are usually cheaper and more effective, 2. They give people the possibility to speak up and say what’s on their mind.

A good example to support the above statement is the work of organizations which are closest to our Association, that is the Wandafonds Foundation and the Association for Parents of Children with Disabilities.

If not for the Wandafonds Foundation, Polish medical centers would not have been able to gain access to the solutions and knowledge regarding present-day methods of treatment and care for children with cerebral palsy. Six years ago the Foundation organized the first workshops and training for Polish specialists. Now the workshops are conducted both in the Netherlands and in Poland by a group of renowned specialists from leading Dutch medical centers under the leadership of world-famous professor Jules Becher. The Wandafonds Foundation provides Polish medical centers with rehabilitation equipment, computers, video equipment, takes an active part in organizing integrative events (football game in Chorzów), initiates new NGO bodies (establishment of Association for Parents of Children with Cerebral Palsy) and cooperates with Polish organizations. One of the fruits of such cooperation is the Dutch-Polish youth exchange program. In April 5 young people from our association will fly to Holland for a week to see how their Dutch peers cope with the challenges of adulthood. This is the second time the Wandafonds Foundation and our association organize this kind of cultural exchange. Such expensive enterprises require a lot of effort on the part of the Foundation’s Board connected with raising funds for organization of such an event.

Although the Association for Parents of Children with Cerebral Palsy is very “young”, it was established two years ago, it can already boast  of a few successful projects. One of such projects is a photographic exhibition entitled “Looking with hope” held in the Polish Parliament as part of the European Day of Disabled People. The exhibit was held under the patronage of the Speaker of the Sejm of the Republic of Poland, Mr. Bronisław Komorowski. The goal of the exhibit was to draw the attention of politicians and public opinion in general to the situation of people with cerebral palsy living in Poland. During the event Mr. Bronisław Komorowski was presented with a petition whose authors postulated the introduction of specific legal solutions which would result in the improvement of the quality of life and status of people with cerebral palsy and their families. The exhibit has already been presented in Dębica and Katowice. The Association along with many other organizations from all over the country take an active part in sessions of the Parliamentary Group for People with Disabilities under the guidance of Marek Plura, MP. Effects? The increase of attendance allowance to gross PLN 520 irrespective of a given family’s income for the period in which the disability ruling issued by the Disability Evaluation Board remains in force. The Association takes part in the proceedings of the coalition of NGO organizations called Razem możemy więcej [United we can do more] whose goal is the development and implementation of appropriate system solutions. On its website the members of Association run a news bulletin covering many interesting topics (see the interview with Marek Plura, MP). They also organize integrative events, such as: Pociąg do integracji [integration drive], carnival Sunday and others. In 2008 the representatives of this Association visited Holland thanks to the invitation from the Wandafonds Foundation. During their visit the children and the parents were able to witness the Dutch social support system in practice.

The “Ożarowska” Association focuses on young adults with disabilities who after ending their education, often graduating from university with an academic degree, have no prospects as to what to do next, they are locked at home, with no rehabilitation, no job, no peer contact. It is with these people in mind that we run our integrative-therapeutic community centre taking care of their physical and psychological state through rehabilitation, meetings with psychologist and art therapy. These activities are often the only form of expression for these young people. Every year we organize summer camps with the help of volunteers who in many cases are the same age as the people they are responsible for. This gives the parents the opportunity to unwind. The Association conducts thanks to the funds granted by the European Union. As a result of Association’s initiative a workgroup for the promotion of supported housing has been established. Its big success is the creation of the Social Dialogue Committee for supported housing with the Office of Social Policy in Warsaw, and hopefully in the spring of this year we will get the first supported flat from the housing resources of the capital city of Warsaw. Our organization cooperates with foreign NGO’s – the American FREE Agency – 3 weeks stay in New York in connection with the project of group family-style homes, and the Wandafonds Foundation – the youth exchange project – visits to the Netherlands in November 2009 and April 2010. The representatives of our Association also took a trip to Achern in Germany in search for alternative ways to improve their mobility. They also learned the ways to promote bikes and bike tourism among people with cerebral palsy. We plan to create bicycle section for our members

The above examples are just a small fragment of the work of the above mentioned organizations which try to fill the gap in the state system of care for people with disabilities, however the work of these organizations is an important step on the road towards developing appropriate system solutions in Poland which are essential for the well-being of children and adults with disabilities and their families.

We encourage you to join us. Together we can achieve more.

Translation - Karol Miller