Project financed by the EEA Grants 2009-2014, as part of the NGO Fund in Romania.
Access to information, specialized services for children with autism and their families, financial resources, a system of social assistance and protection tailored and flexible legal framework to ensure consistency, appropriateness and realism in tackling autism spectrum disorders (ASD) are main needs identified by the Romanian Angel Appeal Foundation (RAA) among parents of children with autism spectrum disorder, in a study conducted in November 2014.
The research, conducted for RAA by the Association Sociometrics – Group analysis of social and economic, was based on case studies – in-depth interviews with parents of children diagnosed with ASD accessing therapy services and a sociological survey based on questionnaires ( 93 respondents, questionnaires with the support of nine NGOs 10 DGASPC the country that offers therapeutic children with autism).
The study included parents of children with ASD aged 0-4 years (26%), 5-9 years (47%), 10-14 years (20%) over 15 years (7%). The parents included in the study were mostly young people 36-40 years (66%), urban (83%), with high school and university (60%). From the perspective of self-assessment resources, 70% of participants feel that they don’t have a very good financial situation but they can manage. 17% of study participants living in rural areas, which highlights the limited possibilities to follow therapy for people with autism who live in the country.
Both case studies and sociological survey shows that, before diagnosis, 66% of families had not heard or knew very little about the condition of an autistic person. For 93% of respondents, the first suspicion of an atypical development occurred until the age of 3 years, and the diagnosis was noted in 72% of cases after a few months of suspicion.
60% of those surveyed believe that after diagnosis, information regarding therapeutic options are extremely important. In terms of quantity and quality of information received after their diagnosis, 40% mentioned that the available data are more or a lot, but 41% said the information received from specialists are old, outdated, and 25% said that the information is hard to understand. Among the sources of information on autism, 53% were appointed psychiatrist, 18% – the Internet and 16% – psychologists. Regarding information on treatment options, are all major sources of information psychologist, psychiatrist, Internet, followed by discussions with other parents in similar situations.
Because the study was conducted through 10 centers for counseling and assistance for people with ASD in DGASPC and nine non-governmental organizations that provide interventions, all parents included in the study had children attending treatment programs accessing therapy services provided by one or more institutions. Given that 83% of respondents from urban areas, we believe that access to therapeutic services and is determined largely by location.
From the perspective of the access to therapy services for children with ASD, 68% of children receive services within a single institution, 32% accessing more services. However, most children going up to 10 sessions / month, or about 2-3 sessions / week, given that international recommendations are 25 to 40 hours per week. 56% of those interviewed children receive services within NGOs providing specific therapeutic services, and 54% of respondents accessing care for their children in the public services.
Nearly half of respondents say that would require the services of a day center for their child with autism (4-8 hours daily) and 30% of parents say they feel the need of respite services (child care in a center, for a few days) to allow them time for themselves.
In terms of access to education, 75% of children with autism, school age, of those surveyed are enrolled in some form of education. Of those who do not attend a form of education, almost a quarter follow training programs for school integration. After the form of enrollment: 64% are enrolled in mass school, 31% study in special schools and 5% are schooled in special classes integrated into mass school.
Only 17% of children attending an educational environment benefits from shadow / caregiver, and half of those parents who are convinced that this attendant benefits is very important for the child’s progress. Of the parents surveyed, 46% said that at least sometimes their child with autism enrolled in school is teased and bullied and 53% say that the school their child is poorly involved in activities to play with peers. According to study participants, teachers are arranged in very large measure to help integrate children (42% of respondents) but only 22% of them say that the teaching staff knows what to do.
Parents concerns about the future are related to the possibility of the child to be independent and to provide the necessary financial and subsistence resources, including access to education and training. The biggest concern of parents about their child with autism is that the child could not take care of himself when he will grow-up (58%), he will not be able to provide financial resources for himself (54%), the father will not have the power to help him (37%) and no one else will have to help him (30%).
Asked what would be the solutions to the needs felt by the whole family, study participants listed mainly: the authorities’ involvement in policy development and assistance programs, consistent training of parents in techniques of behavioral therapy that enables them to help their child be as independent as possible (complementary intervention services provided by specialists), inclusion of children with autism in mainstream education and access to vocational schools, psychosocial support services for the entire family throughout the life, the possibility that parents can maintain a job etc.
In conclusion, our country is still poorly prepared to provide favorable conditions for development of children with autism and their families. We have made progress compared with last year, but further information on autism and specific disease is needed, and also counseling and referrals to specialized services (including easy to understand the information provided) since the first moments when the diagnosis is communicated, training of parents in intervention techniques in order to form a team of professionals and enhance therapy results, financial resources for sustaining interventions, providing a number of hours of therapy sufficient to maximize the functional potential of the children, a system of services for respite for parents, a system of social protection and assistance tailored and flexible and, not least, legislative changes for a coherent and suitable approach to the problems of people with autism.
Study on service needs among parents and young people with ASD was developed under the project “Strengthening of local conceling and support services for parents of children and adolescents with ASD”. The project is developed by Romanian Angel Appeal Foundation, it started at 01/07/2014, lasts 22 months and is funded by the EEA Grants 2009 – 2014, in the NGO Fund.
Coordonator PR, Fundatia Romanian Angel Appeal,
tel: 0721.151.187, e-mail: firstname.lastname@example.org
During 12 to 17 July and 19 to 24 July, two camps for children with autistic spectrum disorders (ASD) but also for their families (parents, siblings) run in Bran, Brasov county. The camps are organized based on the Autism Society of Norway functional and innovative model, that combines stimulation and integration activities dedicated to children with ASD, with activities dedicated to their parents and siblings with typical development.
The camps are organized by the Romanian Angel Appeal Foundation, within the project “Strengthening of local concelling and support services for parents of children and adolescents with ASD” implemented with Norwegian funds.
Each camps is held for 10 families (20 families in total) and include:
– Activities for children with autism (DIY, outdoor activities, sports, etc.)
– Activities for parents (informative sessions on autism, stress management, rights and caregivers of children with ASD, exchange of experience between parents, counseling sessions)
– Activities for siblings of children with autism (support group, outdoor / sports activities, staging a drama etc.)
The activities are implemented with the support of specialists (therapists, psychologists, consultants from Norway) and Romanian Angel Appeal Foundation professionals.
The purpose of this type of camp is to help parents to develop an increased capacity to manage stress and depression caused by the condition of their autistic child, to have an increased capacity to mobilize personal and community resources and enhanced capability to relate with children (typical or autistic), all these things positively influencing long-term chances of integration of children with ASD.
The project “Strengthening of local councelling and support services for parents of children and adolescents with ASD” began on 1st of July 2014, lasts 22 months and is funded by the EEA Grants 2009 – 2014, in the NGO Fund.
Costinela Caraene, PR Coordinator
In late March 2015, Romanian Angel Appeal Foundation (RAA) organised in Bucharest, the training session entitled “Practical interventions in contexts, for children with ASD (autistic spectrum desorder). “
The course was held by two lecturers from the UK (Nicola Key Wood and Victoria Slonims) clinical psychologists experienced in working with parents of children with autism, but also in training professionals.
The training addressed the 26 professionals in centers for counseling and assistance for people with autism, opened within DGASPC in Bucharest Sector 4, Arad, Bacau, Botosani, Calarasi, Galati, Mehedinti, Prahova, Vrancea and Vaslui counties.
The course aimed to increase professional skills of specialists in TSA centers, in order to support services for parents and families of people with autism. The topics of the training during the three days were : therapeutic components in working with families, family inclusion in the management of eating disorders and treatment of sleep disorders in ASD, evaluate progress interventions, case studies. The session included several exercises during which the professionals receive personalized feedback.
Experts who were trained currently offers counseling services for parents and extended family of children and youth with autism, and interventions to community integration of children with ASD. The services are free and are offered in centers for counseling and assistance for people with autism in Sector 4 Bucharest, Arad, Bacau, Botosani, Calarasi, Galati, Mehedinti, Prahova, Vrancea and Vaslui.
The course “Practical interventions in different contexts for children with ASD” was organized within the project “Strengthening of local counceling and support services for parents of children and adolescents with ASD”, developed by Romanian Angel Appeal.
The project began on 1st of July 2014, lasts 22 months and is funded by the EEA Grants 2009 – 2014, in the NGO Fund.
Costinela Caraene, PR Coordinator
Stress at work cessation, anxiety, depression – these are the problems faced by parents of children with autism spectrum disorder (ASD). That’s because the diagnosis of autism is difficult to accept, and the ordeal of life that begins right from the first suspicions of the disease is exhausting. The efforts families make to identify therapies and therapists for their children with autism, to integrate schools, to help them acquire social functioning are enormous and exhausting, because specialist services infrastructure in Romania is still precarious and attitude of the population typically is often hostile. Parents and extended family need specialized support to deal with the disease and to help their children to function in society.
Romanian Angel Appeal (RAA) launched in July this year, a project that aims to increase access to basic social services and for children with autism and their parents, in 10 counties. The project, entitled “Strengthening of local counseling services and support for parents of children and adolescents with ASD” addresses both parents of children with autism and ASD staff in 10 centers in the country that operates within local DGASPC.
Inside the project:
The project “Strengthening of local counseling services and support for parents of children and adolescents with ASD” The project is developed by Romanian Angel Appeal Foundation, it started at 01/07/2014, lasts 22 months and is funded by the EEA Grants 2009 – 2014, in the NGO Fund with 187,485.35 euros, from the amount of 209,950 euro, which represents the total value of the project.
Costinela Caraene, PR Coordinator