Enhancing Access: Independent Living and Community-Based Services
The rights and inclusion of persons with disabilities play a crucial role in the advancement of society. Within these rights, independent living takes center stage, serving as a fundamental component of the United Nations Convention on the Rights of Persons with Disabilities (CRPD). Independent living empowers individuals to cultivate their personal identity and unlock their full potential. CRPD Article 19 recognizes the right of persons with disabilities to live independently and be included in the community, enabling them to exercise freedom of choice and control over their lives on an equal basis with others. Exercising this right entails access to various resources that provide persons with disabilities equal opportunities to live with dignity and autonomy, actively participating as citizens in society.
According to the CRPD Committee, independent living is linked to an individual’s autonomy and freedom and does not necessarily mean living alone or being able to carry out daily activities by oneself. Rather, it should be understood as the freedom to choose and control one’s life, on equal basis with others, with the needed support. Moreover, children possess the right to reside in a nurturing family environment as per the United Nations Convention on the Rights of the Child (CRC).
Understanding Institutional Living
To understand the significance of independent living, it is essential to recognize the adverse effects of institutional living. The European Expert Group on the Transition from Institutional to Community-based Care highlights that residential care institutions often breed depersonalization, limited autonomy, and isolation. Individuals residing in such settings are deprived of meaningful choices and control over their daily lives. The CRPD Committee highlights that even individual homes can be considered institutions if they show defining elements—such as lack of control over day-to-day decisions, lack of choice over whom to live with, and a paternalistic approach in service provision.
Moreover, institutionalization can have long-lasting detrimental impacts on a person’s physical and intellectual well-being. Research demonstrates that children who experience institutionalization often face delays in their physical, intellectual, and brain development. These conditions hinder their ability to thrive and impede their attention functioning.
Moving towards community-based services
Tragically, many individuals find themselves spending most of their lives confined within residential care institutions due to a lack of accessible alternatives. It is imperative for countries across Europe and Central Asia to find solutions that lead to the closure of all residential services and the development of individualized support in the community. Deinstitutionalization efforts should be inclusive and comprehensive, targeting all persons with disabilities, while also implementing measures to prevent any form of (re)institutionalization. According to the UN Committee on the Rights of the Child, children living in institutions should be supported to live in their family, extended family or foster care.
The benefits of community living
Contrary to popular misconceptions, community-based models of care are not inherently more costly than institutional settings. Research indicates that when comparing comparable needs of residents and levels of care quality, community living is not only cost-effective but also yields superior outcomes. The benefits of community living extend beyond financial considerations, as they encompass holistic well-being, social integration and contribution to society, and personal fulfillment.
When transitioning from institutional to family or community settings, individuals who have previously lived in institutions may encounter certain risks. However, it is important to note that the opportunities presented by this transition far outweigh the potential risks. Moving into a natural environment allows people to embrace a sense of normalcy, explore new and enriching experiences, unlock their potential, make independent decisions, and assume personal responsibilities. In this process, community support services play a crucial role in both preventing and mitigating any associated risks, ensuring a smooth and successful transition.
Enabling independent living through support services
Realizing independent living necessitates that governments provide persons with disabilities the necessary support to fully exercise this right. The UN Committee on the Rights of Persons with Disabilities offers detailed guidance on the scope of support required and the conceptual framework surrounding it. This support must encompass access to mainstream services tailored to meet a diverse range of needs, including employment, education, healthcare, housing, culture, and leisure. Additionally, specialized support services should be available to ensure continuity of person-centered care, driven by the individual’s preferences and choices.
Developing inclusive community-based services
Community-based support services hold the key to preventing isolation and segregation while ensuring inclusivity. These services must adhere to essential principles: universal accessibility, proximity to individuals’ homes, meeting quality standards, cultural and gender appropriateness, affordability for low-income individuals, and adaptability to meet the unique needs of each person. Community-based support services need to be strategically planned to allow for an organized approach to meeting diverse individual needs in the community, wide coverage, long-term sustainability, collaboration and coordination among various stakeholders for enhanced outcomes. Ensuring predictable financing of community-based support services promotes their development and diversification. It also promotes a system more able to prevent situations of vulnerability and risk rather than just react to them.
In conclusion, the adoption of independent living principles and the establishment of community-based services are key to unlocking the power of inclusion and empowering persons with disabilities to lead fulfilling lives. It is the responsibility of countries, as outlined in the legal framework of the CRPD, to dismantle barriers, promote equal opportunities, and create an inclusive society that nurtures the potential of every person, regardless of their abilities.