There is much discussion at the European and international level about the rights of older people. We know that Europe is ageing (i.e. people are living longer, therefore the number of older people is increasing), and we understand that Member States are under pressure to provide for the increasing number of older people in their countries. We also know that, across Europe, there are concerns about the lack of support and care services for older people; many older people are subject to abuse, face loneliness, many families are struggling to care for their older family members. At the international level, work has been under way for some time to possibly introduce a new treaty focusing on the rights of older people.
The European Network on Independent Living – ENIL is concerned about the increasing focus on residential care in the European Union, and the demands for increasing the number of residential care facilities in Europe. This goes against the efforts to promote quality community-based services for all those requiring support, as an alternative to residential and institutional care.
Many older people are in need of support and care because they have acquired disabilities at a later stage in life. It is crucial that older people with disabilities are provided with the rights guaranteed under the UN Convention on the Rights of Persons with Disabilities (CRPD), and this includes being able to live independently in the community. As is made clear in the General Comment on Article 19, the right to independent and community living applies to all disabled people, regardless of their age.
To better understand why independent living is important to older people, we have spoken to two disability activists – Anne Pridmore, from the United Kingdom, and Gordana Rajkov, from Serbia. We will present the perspective of other older disability activists in the future issues of our Newsletter.
Why is independent living important for older people?
Anne Pridmore (AP): Why is independent living important for older people? Independent Living is extremely important to me because it gives me the opportunity to remain in my own home with my two dogs, and to pursue the activities I enjoy with the right people to support me.
Gordana Rajkov (GR): I think independent living is important, first of all, for the people who have experienced independent living during most of their life, certainly before they come to the age which is considered to define you as an “old person”. If you have been living independently when you were younger (30-40 years of age), obviously it is very important for you to keep this way of living when you are over 60 -70 years of age.
If those persons have been living most of their lives with their family or by themselves and never have heard about the philosophy of Independent Living, I think it is not easy to raise their awareness once they are 70 years of age.
However, it is very important that the basic principle of the Independent Living philosophy – choice, is in place for everyone. So, it should be a decision of the individual where they want to live, how and with whom. Therefore, I will insist on choice, which should be available for older people, as for everyone else. As well as that, based on my experience, a lot of older people live independently in their homes, with support services in the local community. Usually this is home care, which is based on principles which differ from Independent Living, as we would define it.
What does independent living for older people look like?
AP: Independent Living is about having the right to choose who you have to support you. Remaining in a position to optimise choice and control over what time I get up, go to bed, the food I eat, when I take a shower. Many older people will require only minimal support. This will, of course, depend on how much they are able to do for themselves. Much research has been done on the value of enabling older people to remain in their own home, which often results in a longer lifespan.
GR: My experience is (living independently for many years), it does not differ from the way I lived before. Except that, as I am getting older, I need more help and support with everyday activities, which I am not able to perform as I did before. The basic thing is that I am making my choices, make my own decisions and control my life myself.
Are there any additional challenges or barriers in accessing independent living as an older person?
AP: One of the challenges I am experiencing is about resources. For example, it is cheaper to house someone in an old people’s home. However, this should be costed in terms of the fact that I am employing six Personal Assistants, who in turn are adding to the economy.
GR: Certainly, additional challenges or barriers could be national (or local) legislation, which might restrict the right to have services, such as personal assistance, based on your age. Also, health issues and conditions might influence your decision to live independently, despite your lifestyle.
How has your experience of independent living changed as you have got older?
AP: It is becoming harder to justify the cost of my care package. However, because I employ my own staff, I still have autonomy/choice in my life.
GR: As said before, my experience in living independently does not differ from the way I lived before, except that now I am getting older, I need more help and support with everyday activities, which I am not able to do as before.
Why should older people care about the UN Convention on the Rights of Persons with Disabilities (UNCRPD)?
AP: UNCRD is extremely important to older people because, Article 19 sets down in law the right to Independent Living. Also, Article 8 of the European Convention on Human Rights provides a right to respect for one’s “private and family life”, his home etc.
GR: The UNCRPD is a document which is about human rights and the responsibility of society to provide conditions that will enable persons with disabilities to achieve those rights, regardless of age, gender and other differences. There is a bigger chance that older people will live alone, because their children have their own families and they will not have much support from them. Therefore, this document is relevant for older people as well, because it sets out their rights too. This is particularly important because, as people get older, they might have more health problems and will need support in their local communities – to enable them to stay in their own homes, if they decide so, and live the life as they lived before.