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Description
The “Being more IN” project is aimed at 30 young people with Rett syndrome and other severe multi-disabilities and their families. Workshops on music, art, plastic expression and snoezelen sensory stimulation (promoting relaxation and cognitive development) will be held every week. All beneficiaries will have an individual plan, in which their preferences and abilities will be considered. These workshops will also serve for socialisation between peers and family members of people with this syndrome so that there is no feeling of exclusion, so characteristic of this type of target group.
Summary of project results
The project aimed to address significant issues identified in the Social Development Plan (PDS) of Seixal municipality, where over 50% of people with disabilities had a degree of incapacity equal to or greater than 60%, based on 2019 population estimates. The PDS identified a lack of social services and facilities for people with disabilities as a major weakness. Additionally, ANPAR observed that support projects and initiatives for individuals over 18 were scarce and often inadequate, leading to social isolation and exclusion for those with severe motor and cognitive limitations. Life projects were designed for independent living, but due to their limitations, these individuals could not achieve autonomous social integration and remained dependent on third-party care. Consequently, they were often left with limited options for social support or faced severe social isolation and exclusion.
The project began with the young adults registrations, followed by the evaluation of interested individuals for subsequent selection, considering predefined criteria such as caregiver burden and time in social isolation. The evaluation process for young adults occurred alongside the identification and selection of meaningful activities, structuring, and seeking community partners like municipal pools, sports halls, equestrian centers, and the APPACDM Porto Rehabilitation and Wellness Center to implement some of these activities and define group dynamics and workshops. Schedules were then created for the 30 participants, considering their interests and personal characteristics.
During the project''s execution, the scheduled activities proceeded as planned, without interruptions, except for municipal holidays, plenary sessions, and strikes. All activities were monitored and facilitated by ANPAR''s specialized team, including occupational therapists, speech therapists, psychomotor therapists, music therapists, psychologists, and experienced disability monitors. Activities included hydrotherapy, hippotherapy, psychomotricity, music therapy, art therapy, korfball, volleyball, Snoezelen, and thematic workshops. The project was conducted weekly, and due to the supported population''s heterogeneity and dependency level, all human resources of the institution, including those not co-financed by the project, were allocated.
Throughout the project, attendance and satisfaction records (both direct and from families) were kept, collected formally and informally. Adjustments were made as needed to better meet families'' needs, such as using ANPAR spaces for alternative activities when community spaces were unavailable. Feedback from beneficiaries was consistently positive and appreciative.
For dissemination, an initial event presented the project and its objectives, as shown in the previously available video pitch. Throughout the project, there were regular social media posts representing the developed activities. The project concluded with an event at the Seixal City Hall auditorium, focusing on the results and the importance of replicability. Significant attendees included families, partner entities from Seixal and Porto, Seixal City Hall, Amora Parish Council, school groups, similar associations, and the Calouste Gulbenkian Foundation. The event showcased works created by users during the project and featured a summary video.
For institutional capacity building, Aliados Consulting conducted an organizational needs assessment from June to September 2022 through three information-gathering meetings, reflection moments, and needs identification across various functional domains, resulting in an organizational needs diagnosis that formed the basis of the action plan. Additionally, ANPAR''s capacity was enhanced through the "Marketing and Communication" training by Entreajuda Association.
In terms of results the project achieved significant improvements in peer relationships and a sense of belonging among participants. Initially, there was strong inhibition and loss of occupational identity, with no defined roles or life projects. After the project''s conclusion, there was a notable improvement in the physical and emotional well-being of the youth, their interpersonal relationships, increased interest and initiative in participating in activities, and a significant boost in self-esteem. Throughout the project''s duration, beneficiaries expressed feelings of satisfaction, joy, and gratitude for the project''s existence, which primarily aimed to enhance their quality of life and autonomy. Additionally, the promoter''s monitoring and positive evaluation of the achieved objectives, compared to the planned ones, highlighted the project''s success. Caregivers also reported improvements in their relatives'' skills and quality of life, providing them with physical and psychological space to breathe and rest, which was previously unavailable.