The image shows the “Make the Right Real in Malaysia” logo of The OKU Rights Matter website and a girl with cerebral palsy responding with delight at the colourful circular foam result of her science experiment.

Independent Living in the Community

Even trees need a friend. We all need friends. It all happens automatically. We want to use a lot pressure while using no pressure at all.

Independent Living in the Community

Every day, we make routine choices about what to eat, when to go out, where to shop or meet with friends, how to get to a place we want to go, etc. For many persons with disabilities, making these choices is not an easy act and almost always require careful thought and planning.

Meanwhile, many persons with disabilities who live in institutionalised settings do not have the choice and control in their daily lives, such as when and what to eat, when to sleep, and who they live with. Some living in institutions experience abuse or have no financial autonomy over their own money, especially women and girls with disability and persons with intellectual disability. This consequently prevents them from participating and engaging in the lives of their local community, as well as developing or maintaining everyday life skills for living within the community.

Living independently within the community and being able to exercise choice and control in their own daily lives are crucial factors that enable greater social participation and inclusion of persons with disabilities in their local community; which significantly elevates their quality of life.

Article 19 of the United Nations (UN) Convention on the Rights of Persons with Disabilities (CRPD) states that people with disabilities have the right to live independently and be included in the community. The CRPD Committee further clarified in General Comment No. 5 that living in institutional settings does not constitute living independently and being included in the community.

Choice in Housing Arrangements

Persons with disabilities have the right to choose where they want to live, whether it is:

  • a housing unit they own or rent,
  • in their family home,
  • in a rented room with other tenants,
  • in a group home with other persons with disabilities, or
  • in supported living accommodation (also known as assisted living) with others.

People with disabilities have the right to age well and with dignity in the home and community they choose to live in.

Persons with disabilities also have the right to choose who they want to live with, whether alone, with their family, spouse or partner, friend, relative or housemate.

Persons with intellectual disabilities and persons with complex needs or disability are at a greater risk of experiencing lack of autonomy to decide their own housing arrangements. This is due to:

  1. a lack of financial independence,
  2. a lack of accessible information and supported decision making about living arrangements, and
  3. misconception that independent living means living on their own with limited or no support.

Supporting Persons with Disabilities to Live Within Their Community

Persons with disabilities can live independently and participate meaningfully in their local community with well-organised support, including persons with complex needs. A wide range of services that are essential to support independent and community living for persons with disabilities should be provided in every local community, including but not limited to:

  • Personal assistant services
  • Community support services, especially navigating complex state and federal civil services
  • Skills training for everyday life skills, self-advocacy, financial literacy, job-seeking, etc.
  • Information and referral services
  • Housing adaptations
  • Technical aids and assistive devices
  • Peer support/counselling
  • Advocacy support
  • Recreational activities

In the USA and UK, services such as the above are provided by Independent Living Centres based on what the local community needs. Hence, Independent Living Centres are service and advocacy centres, and do not operate residential homes or places where people live.

Regardless if a person with disability is living alone, living with family, or living with others in group home or supported living accommodation, the person should have access to community-based services such as those listed above.

At the same time, these independent and community living support services for persons with disabilities need to be established based on self-directed autonomy, disability-inclusive and barrier-free principles. Additionally, access to independent and community living support services will not be possible if persons with disabilities do not have:

  • Access to disability-inclusive quality healthcare
  • Basic financial security, such as gainful employment, universal basic income, or financial support
  • Access to public transportation
  • Barrier-free access to built environment
  • Access to information in multiple accessible formats
  • Lifelong education opportunities
  • Access to disability-inclusive helplines, particularly prevention of gender-based violence, suicide prevention, and mental health assistance
  • Disability-inclusive and anti-discrimination housing policies for persons with disabilities

Resources

*Note: Resources linked are in English and pdf format, unless stated otherwise.

Deinstitutionalisation

From institutions to community living for persons with disabilities: perspectives from the ground by European Union Agency for Fundamental Rights

Deinstitutionalisation and housing futures: final report by Australian Housing and Urban Research Institute

Deinstitutionalisation, disability and delay by Florian Sanden

Independent/Supported Living for Persons with Disabilities

Let’s wise up on housing options for people with intellectual disabilities (Australia) by Christine Bigby for The Conversation

Models of Residential Provision for People with Disabilities by National Disability Authority, Ireland

3 Forward-thinking Housing Options for People with Disabilities by Bethesda

A Guide to Supported Living Concepts and North Carolina Innovations’ Supported Living Service Definition by North Carolina Department of Health and Human Services

Supported Living Services in the UK by NHS

Independent Living Centre

The History of the Independent Living Movement by Northeast Independent Living Program (NILP)

New York State Independent Living Services (USA)

Malaysia needs at least seven independent living centres to help the disabled in Malaysiakini

Reports and Research Papers from Other Countries

Moving to my home: housing aspirations, transitions and outcomes of people with disability by Australian Housing and Urban Research Institute (easy-read report available from p. 96)

Disability Housing: What’s happening? What’s challenging? What’s needed? (USA) by Micaela Connery

Housing Needs for Individuals with Intellectual and Developmental Disabilities (USA) from The Kuni Foundation

Housing for People with Intellectual Disabilities: The Lack of Support for Independent Living by Inclusion Ireland