- Semi-structured interviews with families of young people with intellectual disability
- Bubamara staff made the interviews because of the confidential atmosphere between staff members and PwDs families'
- We made 9 interviews and 100% of respondents were parents/carers and not persons with disabilities themselves
- Questions used in the interviews:
1. What are your expectations /ambitions for your son/daughter's life? Are they changing during the time?
2. What factors have contributed to the empowerment of your family's quality of life?
3. What kind of informations would you like to have from your Local government about services for people who have disabilities and their parents?
4. What services do you think can be useful for you as a parent?
Towards this methodology the study attempted to develop a broader perspective on the situation of the population of parents of with disabilities in regard to their social, economic, political, civil and cultural status. Secondly, the interviews results also gave insights in to therelevance and impact of Bubamara's current services.
Objectives of the interviews:
1. To identify future living needs and aspirations of persons with disabilitiesand their parents in need of supported living, and related issues
2. To the impact impact of Bubamara's (centralized and community based) programs with persons with disabilities, their families and communities in general, and those in need of supported
3. To identify compatibility of and changes required inBubamara’s approach to its work with persons with disabilities, their families and communities, and make recommendations in order to address the supported living needs and issues of persons with disabilities
Main problems emerged from the inteviews:
Exclusion from participation and community life
Participants were of the opinion that one of the most significant barriers for persons with disabilities and their families is the lack of equal opportunities to participate in society and to make informed decisions. This can be caused by inaccessible mainstream services, often leading to persons with disabilities being confined in segregated institutions, separating children and young people from their families.
Stigma and Discrimination
Prejudices held by society, family and individuals act as a barrier to people with disabilities exercising their right to full participation in society. Parents argued that cultural biases define people with disabilities as not equal participants in society, powerless and incapable of contributing.
Access to support services and resources
The current demand for programs and services exceeds the availability and capacity of existing programs/services. Parents also receive very little assistance/support to give care. Regardless the public authorities’ official endorsements to the independent living of disabled people, the right to live independently is often violated. People with disabilities from all cities and municipalities who need some form of support in their everyday lives are often required to relinquish living in the community in order to receive that support or the support is provided in a way that takes away people’s control of their own lives. Despite determination to develop new social services at national and local level, the capacities are still insufficient and social services meagre, thus confining a person to the margins of the family or society, especially in the Area of Special State Concern. PwDs are often isolated and segregated from their communities and confined to institutions. Even when they are physically located in their communities, they are barred from meaningful participation in the community life because either services are not available or communities’ organisation exclude them from participation. Whenever possible, communities should be supported in organization of community based services that will secure independent living of PwDs in their homes.
Access to quality education
Most participants agreed that education is a key for building an inclusive society. In Croatia mainstream education rules and regulations ensure the right to education for everybody, regardless of their physical, intellectual, emotional or other conditions. No school can deny access and an adapted education programme to any pupil on the grounds of disability. Despite existing legislation, they often lack sufficient government and social support for their full integration or the right to education for children with disabilities is enforced within a framework that is targeting mostly special schools or specialised institutions. In practice, educational inclusion has not been treated systematically in everyday school practice and the implementation of their rights is still sporadic. Without adequate support (technical and physical) children with disabilities become excluded form school system and very often they become institutionalised. This is even more pronounced in the case of children with disabilities living in rural areas, i.e. in the Area of Special State Concern.
Access to employment
The majority of people with disabilities have faced inequality in terms of unequal access to employment, compared to those without disabilities. Participants agreed that major contributing factors include ignorance and failure to provide reasonable accommodations that would allow qualified individuals to perform the essential functions of their job. Furthermore, persons with disabilities face stereotypes, marginalization and often patronizing responses from managers, colleagues and employers. Ignorance levels within workplaces can also be attributed to the absence of monitoring of compliance to existing legislation. On the other hand, people with disabilities are often successful when they have small business development opportunities and, when employed, often have higher retention rates, as well as lower absenteeism.
Access to healthcare services
Persons with disabilities experience higher levels of unmet health needs than people without disabilities. Participants in the interviews agreed that having a disability leads to incurring more expenses in daily life – expenses seldom supported by the state or society at large. The lack of resources often results in the inability of persons with disabilities to meet basic human needs. The standard of living of persons with disabilities often determines access to health and other services. Children and people with disabilities are frequently removed from their families and forced to live in institutions, where they may not be able to access mainstream services and may be neglected, which in turn impacts on their ability to participate fully and contribute to the life of their community. In addition, inequalities exist between persons with disabilities depending on whether they live in rural or urban environments; persons living in rural environments have less access to services and support.
Overview:
1. What are your expectations /ambitions for your son/daughter's life? Are they changing during the time?
Most of the interviewed parents answered to this question in the way that they want their children to be healthy and happy, i.e. to live like young people wuthout disability live. Two parents expresed their desire to see their children finishing the high school and get a job even if they don't have many illusions about the possibility for their children to get a job, but as one father said:
We are talking about our wishes now not about possibilities
Other three parents said that see their children supported to live independently as a key for them to have what other people call a normal life.
More often people with disabilities are seen as recipients of services and a burden rather than equal members of the community, I want to see may son living his life making some decision on his own, participating in the community and maybe get a job.
2. What factors have contributed to the empowerment of your family's quality of life?
Seven of nine people interviewed talked indicated activities and services inside the Association of people with disabilities „Bubamara“ as a most important factor that contributed to their children empowerment.
Two people said that no factors contributed to their empowerment, they don''t see any improvment of their children life conditions.
For me and my son some regular activities were very useful like bibliotherapy, workshops where my son particpated, disco and others.
3. What kind of informations would you like to have from your Local government about services for people who have disabilities and their parents?
Six people said that they didn't received any information from local government untill now. Other three people said that the informations were not enough to support them. They would like to have some informations about the access to the education with supports, about rehabilitation, financial support, parents reliefe, etc.
It is important that we have at our disposal those informations form associations of people with disabilities but these informations should be given to us from authorities and institutions in the community.
4. What services do you think can be useful for you as a parent?
Most of the parents answered that they see personal assistance as a key service for the integration of the PwDs in the community and for the prevention of the segregation. Choice and control over the support needed to live and be included in the community are of paramount importance in the area of support services, in particular personal assistance. Also. most of them need the access to transportation as a major issue for people with disabilities living in rural areas. In order to benefit from independent living, and to provide disabled people accessibility to education, health, leisure and social integration, PwDs need adapted transport facilities
Conclusion
The closure of institutions and the promise of community inclusion was one of the great social policy changes of the 21th century. But the social and economic segregation that has followed is harder to dismantle. Closing doors is one thing. Making fundamental changes to our policies and programs, and changing the way we think, is another. But as the participants in this consultation told us, they can no longer accept anything less.
People with disabilities want to bring about a transformation of their lives. They want their human rights recognised and realised. They want the things that everyone else in the community takes for granted. They want somewhere to live, a job, better health care, a good education, a chance to enjoy the company of friends and family.
They want the chance to participate meaningfully in the life of the community.
