Health Planning for Decongregation

Traditional v New Model of Care

The traditional model of care for people living with serious physical, mental, intellectual and sensory disabilities has been their congregation or institutionalization into long-term accommodation, relying on the full support of clinical and non-clinical staff.  However, since 2007, there has been global recognition of the rights of individuals living with disabilities to have the opportunity to be equal citizens, having independence and choice, with the ability to participate in their wider communities. This change in attitude was marked through the United Nations Convention of the Rights of Persons with Disabilities, signed by 164 states and the European Union. As a result, many countries are now in the process of implementing a policy of “deinstitutionalization” or “decongregation” of people with disability out into the community setting.

Context in Ireland

Ireland was a signatory to the UN Convention and in 2011, the Health Service Executive published a policy document entitled “Time to Move Away from Congregated Settings”. This was followed up in 2013 with dedicated healthcare standards and guidelines for residential services that provide care to adults with disabilities that comply with the stipulations of the UN Convention. Currently in Ireland there are approximately 4,000 people with disabilities living in residential centres and for most of these, decongregation to community-based and more independent living is the goal.

Health Planning Challenges

There are a number of health planning challenges associated with the policy of decongregation, including: the design and development, or purchase, of facilities/housing. The new community-based housing may need to be single-story, have wheelchair access and bathroom/shower supports to allow the residents to live as independently as possible; the new housing should be located close to acute and primary care facilities and have access to public transport routes. Where possible, residents should be housed close-by to their families; as the model of care for people with disabilities is now changing, the community health services provided by the state will have to change accordingly;  the skill-mix of the workforce in the long-term care sector, previously accustomed to the congregated setting, will have to adapt to providing care for patients in a more independent setting; a component of more independent living will require access to jobs and further education for former residents of long-term care centres. This will involve communication and agreements with the Departments of Jobs and Education, and other relevant stakeholders; monitoring will be required to ensure that people who have been decongregated are successfully adapting to their new environment and are integrating with the local community, and vice versa; and, the cost of implementation of this policy is a consideration, especially where the purchase of land or existing facilities is required and the associated cost of tailoring these facilities to meet the required standards, as well as the cost of re-training and restructuring the workforce to service the new model of care. Furthermore, data from the National Intellectual Disability Database indicates that the number of people with disability living for more than fifty-five years is increasing and so the new model of care has to respond to the increasing longevity of people with disability.

International Examples

There are international examples of where deinstitutionalization/decongregation has been implemented that include Sweden, the United States of America (USA) and Australia. Sweden initiated this policy in 1954 and, through a process of trial and error over fifty years, was able to move all long-term services for people with disability out of institutions by 2000. In the USA, the number of institutionalized individuals was reported to have decreased by 95% since the 1950s, however, this process has stalled due to the implications of the global recession and budget cuts. In Victoria, Australia, Active Community Housing undertook the task of creating community-housing accommodation for people with disability in 1996, which it continues to do today. With the assistance of state funding, Active has successfully provided homes to 606 people with disability in the community.

Lessons

“Bold and innovative policy decisions are not self-executing” as noted by Jim Mansell and Kent Ericsson in their 1996 study on deinstitutionalisation in Scandinavia, Britain, and the USA.  The experiences of deinstitutionalization in Sweden and the United States required the setting up of organizations, processes and frameworks, and staff to implement, monitor and evaluate implementation.  For Ireland, and any other developed country, the successful and timely implementation of a deinstitutionalization/decongregation policy will require informed and evidence-based health planning solutions.