Progress comes with problems which then need to be addressed. This is the situation we are currently facing regarding issues of deinstitutionalization. As with almost everything – there are few things that are ALL GOOD and few that are ALL BAD and this is the case here. Unfortunately, many advocates have broken this issue into GOOD and BAD without looking at the “in-between”.
People need to realize that by the very nature of the disability “intellectual disability many need other people to help them make decisions on their behalf and their quality of life may depend crucially on the help of others. Just because one is given choices does not mean that one is capable of making those choices, particularly when one does not have the skill or knowledge to understand the consequences or even a need to make a choice. Choice involves both opportunity and decision-making – freedom to choose, initiative to choose and the skills to choose. (R.J. Stancliffe, 2011) Those who live in supported living homes are more likely to be vandalized or be exploited by those in the community – yet they have more choice. Choice, without skills and knowledge is dangerous. It is important to note that it should not be presumed that independent choice is always the most desirable outcome. (R.J. Stancliffe, 2011)
I believe we need to slow down on this process – not halt it, but take a step back and re-assess what we are doing here. What I have witnessed is an emphasis on quantity rather than quality just to get people out of the institutions, Simply moving people into dispersed homes and thinking progress is being made with deinstitutionalization is a sham.
What comes up again and again is staff support. Trained, stable staff is the key to good outcomes. Care providers need training and leadership yet this is not a priority. The lack of capacity leads to priority given to quantity of placements and not quality of placements. When the funds are spent on the physical placements and not directed to staff training and support we end up with “unskilled minding.” (Mansell, 2006) We need funds to be directed to training in active support and other types of direct help which enable people – especially those with the most severe disabilities – to grow and develop as individuals and to engage in meaningful activities and relationships in their community (Mansell, 2006).” Unfortunately, this is rare.
It is clear that those people with the highest support needs experience poorer outcomes than those who are more independent. These people are also the generally the last to move to dispersed housing and they experience more difficulties living in the community at large and are the most at risk. Many of these people have challenging behaviors and need trained staff in safe ratios to care for them. What happens is these people become isolated and imprisoned due to the lack of support.
What I do not understand is why, when we are facing a crisis situation in our dispersed housing communities, would advocates propose adding to that population without adding adequate supports? You cannot simply put these people into dispersed homes without the support they need to maintain their quality of life. This support also needs to be sustainable – not a one year grant. When a person is totally dependent on another person to even go outside the house the quality of life is dependent on the quality of care and the staff ratios.
It’s also not just socialization but medical health which is affected by this movement. Regardless of deinstitutionalization stage, important deficits in variables related to medical health were found in family homes and independent living arrangements (Anna P. Nieboer, 2011)
There is reluctance on the part of health care professionals and parent’s to move people to dispersed homes. Even though there are studies which indicate community living can improve the lives of many people there continue to be many problems associated with negative outcomes. (R. Martenez-Leal, 2011) There are serious deficits and under-performance of outcomes in community-based services which need to be corrected. Staff training, support and stability is a major issue. These issues need to be addressed and supported in order for families to health care professionals to proceed.
Looking at the care provided has disappeared as a priority in the deinstitutionalization movement. Without our priorities changing, I’m afraid that more and more people will be isolated and abused for the sake of this movement.
We need to change the focus from looking at intentions and wishful thinking to looking at outcomes and results.
Anna P. Nieboer, V. P. (2011). Implementing Community Care for Poeple with Intellectual Disability: The role of Organization Characteristics and the Innovation’s Attributes. Journal of Applied Research in Intellectual Disabilities, 24, 370*380.
Mansell, J. (2006, June). Deinstitutionalisation and community living: Progress, problems and priorities. Journal of Intellectual & Developmental Disability, 65-76.
R. Martenez-Leal, L. S.-C.-d.-C. (2011, September). The impact of living arrangements and deinstitutionalisation in the health status of persons with intellectual disability in Europe. Journal of Intellectual Disability Research, 55, 852-872.
R.J. Stancliffe, K. L. (2011). Choice of Living arrangements. Journal of Intellectual Disability Research, 55, 746-762.