Social inclusion and community participation of adults with intellectual disabilities
Since its development in 1875, the concept of community participation has evolved through a number of periods: 1) isolation and segregation, 2) integration and inclusion and, more recently, 3) community participation.
Autonomy and involvement in decision-making, environmental quality, vocational services, availability of transport, greater family involvement and the availability of social support are a few examples of important factors needed to increase the community participation of adults with ID within the social responsibility program of Ginásio Clube Português.
Society has made progressive efforts to increase the community presence of adults with ID than, in fact, to facilitate their life within it. Simple “presence” in the community is an insufficient measure of social connection, and greater consideration should be given to the value of relationships with family members, opportunities for people with ID to contribute to the benefit of their communities and relationships with others with and without ID that they consider their friends.
International studies based on interviews with adults with ID report data worthy of attention:
- Most adults with ID have contact with at least one family member. However, the frequency of contact decrease with increasing age and severity of difficulties
- 75% never wrote, sent text messages, emails or used social media tools, to contact their family or friends
- 50% say that sometimes they feel alone
- Most have someone to trust. However, 75% report that their confidant is a professional
- Most have a hobby and interact socially in situations, such as eating out, going to church, shopping and going to the hairdresser and cinema, but rarely with people outside the institution and/or family
- Most are dependent on others for transportation and assistance to use community services, which is the biggest barrier to successful community participation.
Although there are several examples of success, the optimal amount, frequency, context and support structure for the social inclusion of adults with ID remain unknown. The Ginásio Clube Português, as a recognized non-profit public service institution, and a club with social purposes attentive to the inequalities of the most disadvantaged groups, created the program SPORTS4ALL in 2012, an inclusive community program with a specialized technical framework, based on an educational and therapeutic intervention for adults with ID. In 2016, with over 125 participants, SPORTS4ALL expanded to the exercise and health domain, offering health-related exercises to adults with ID.
In 2018, Ginásio Clube Português developed a partnership with the Lisbon City Council to run MOV'IN, a program aimed at promoting regular physical activity in adults with ID, motor or visual difficulties. Aware of the large number of barriers that these people face to be physically active, MOV'IN breaks down known barriers such as transportation, financial limitations, lack of social support, lack of access to equipment or other environmental resources to provide physical activities and specialized service providers to a total of 30 participants.
Despite these examples of structured supports in social inclusion, the concept of instructing mentors with ID and encouraging leadership remains an untapped idea in the development of meaningful relationships with community members with or without ID.
It was precisely for this purpose that Ginásio Clube Português developed the project SAME SAME with the support of the “Programa Nacional Desporto para Todos by the Instituto Português do Desporto e Juventude. SAME SAME promotes social inclusion through the instruction of 20 adults with ID to conduct activities in the exercise room for people with or without disabilities, through a 52-hour training plan for mentoring and encouraging leadership. Training includes content such as personal hygiene, autonomy, social skills, personal development, socio-work skills, physical exercise counseling and an internship.
By involving adults with ID as mentors, SAME SAME seeks to facilitate the connections of adults with ID with the community and to inspire other participants to their real capabilities by actively involving them in the growth and support of the community. The effectiveness of SPORTS4ALL, MOV’IN and SAME SAME is examined by the changes induced in the various dimensions of adaptive behavior and in the quality of life of the participants.
Although these programs contribute to the establishment of a new paradigm of social inclusion for adults with ID, the way to scale up the number of beneficiaries remains to be determined. It will require investment in training and hiring professionals specialized in promoting community and reciprocal interactions. Further, the costs for the public and even private sector for such development and/or reorientation of current investments need to be identified.
The Ginásio Clube Português, within the scope of its social responsibility program, will continue to develop support networks between partners, and will promote systematic skills training programs for the development and management of support for the social inclusion of people with ID.
Xavier Melo is the Head of the Research and Development Department of Ginásio Clube Português (GCP) and Coordinator of the GCP Lab, a scientific center of innovation and collaboration devoted to exercise, health and sports performance. He's an Assistant Professor at Escola Superior de Desporto de Rio Maior - Instituto Politécnico de Santarém and at Universidade Europeia in Lisbon. He holds a PhD in Physical Activity and Health (2015) and a master’s degree in Exercise and Health (2009), both at Faculdade de Motricidade Humana - Universidade de Lisboa (FMH-UL).
This article has been co-authored by Ana Louseiro and Sara Planche.