Protesters at the Freedom Drive

Personal Assistance, designed according to the human rights model of disability, empowers disabled people and is the key ingredient of community-based support. To increase the prevalence of human rights based personal assistance, the EU and its member states should adjust their investments.

Florian Sanden – European Network on Independent Living, ENIL

Article 19 of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) recognises “the equal right of all persons with disabilities to live in the community, with choices equal to others”. As General Comment No 5, published by the UN committee on the rights of persons with disabilities, explains, art. 19 entails a fundamental change in the support of disabled people. Instead of being obliged to live in institutional settings such as nursing homes or psychiatric hospitals, disabled people have the inalienable right to live independently in the community, exercising the same self-determination and autonomy as everyone else.

The paradigm change of deinstitutionalisation means in no way that disabled people are supposed to live alone and without support. Art. 19, b specifies that instead of living as passive recipients of care in institutions “persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance”. Deinstitutionalisation thus has two main elements: 1. The closure of institutions and 2. The expanding provision of disability support through community-based services.

Personal Assistance as a break-through in disability support

The key ingredient of community-based services is the access to personal assistance (PA). General Comment No 5 defines PA as “person-directed, user-led human support”. Personal assistants (PAt) are individuals providing direct, one-on-one support to disabled people, enabling them to achieve the same range of self-determination, opportunities, and activities as a nondisabled person, both at home and away, in the community. A personal assistant accompanies a disabled person for as much time during the day as required and provides support in as many areas of activity as required. This can entail activities such as dressing, cooking, reading, driving, bathing, childcare; and spontaneous activities such as a business trip, tidying up the garden, joining an education class, or visiting friends. This can also entail health and hygiene related activities.

Schemes allowing access to personal assistants were introduced for the first time in Sweden on 1994 and the United Kingdom in 1996. Personal assistance is commonly regarded as “one of the most significant innovations in disability policy over the last several decades.”

The state of personal assistance in the Europe

The ENIL independent living survey from 2020, revealed that 33 out of 43 countries in the Council of Europe area have personal assistance schemes in place. Within the EU, Luxembourg and Hungary do not have PA-schemes. Respondents evaluated the overwhelming majority of PA-schemes as “requiring improvement” or “inadequate”. Out of the 33 countries that have some form of personal assistance, only Slovenia was viewed as having adequate personal assistance. However, some sources also evaluate Slovenia´s PA-schemes as inadequate due to the limited number of hours granted to PA users.

Why home care is not personal assistance

Personal assistants are frequently confused with home care services, also called domiciliary care. With home care services disabled people can live in their own apartments or houses but they have no control over the times care assistants come into the home or the tasks they perform. Usually, domiciliary care only involves attendance for a couple of hours per day. The tasks performed rarely go beyond health and hygiene related activities. Such services only provide disabled people with the means for subsistence. The disabled person is left without opportunity to undertake any activities that make life meaningful such as maintaining social contacts, having a family, pursuing education and employment. Crucially the disabled person has no control over who performs the home care activities. The selection of care assistants is entirely in the hands of the service provider. If the care assistant displays ableist prejudices, is incompetent or just unfriendly there is little the disabled person can do to receive a different carer. As a result, home care leads to the institutionalisation of disabled people in their own homes which can be very isolating and traumatising. In any way the dependence of the disabled person on the care service as well as the hierarchical authority of the disabled person are highly disrespectful of human dignity and in violation of the UNCRPD.

What is good Personal Assistance made of

The be classified as personal assistance, a disability support service has to enable choice and control of disabled people. This means “the user [of PA] decides who is to work, with which tasks, at which times, where and how” (Ratzka 2004a, 2004b).

According to a key study from 2019, users of personal assistance regard the ability choose the person acting as personal assistant as the most important element. Being free from any interference in selecting the person to provide the PA, involves the ability to hire the personal assistant from the open labour market. Thus, the disabled person becomes an employer who can also choose to end the working relationship at any time. If the responsibilities of the employer are delegated to a service provider, the disabled person must have complete control over which individual is acting as personal assistant. Only this way a one-on-one relationship is constituted and the continuity of support maintained.

Having complete control over the “who” also entails control over the “which”. Acting as an employer who is hiring as personal assistant or delegating this task to a provider, the disabled person retains the power to decide which tasks are to be performed. Whether the disabled person wishes to go for a hike in the forest, clean the apartment or go to a football game, the personal assistant acts as arms and legs of the disabled person and thereby enables choice on an equal level with others.

Depending on the type and degree of the impairment, a disabled person has different support needs. Some disabled people might need support 24 hours a day, 7 days a week. Other might only require support a couple of hours per day. Some might prefer to have the personal assistant present in the afternoon, others in the morning. Deciding the duration and the times at which personal assistance is provided is therefore another major element of PA. Good personal assistance also has to provide support wherever the disabled person wishes, whether it is in a house or apartment, a tent on the beach or a three top house in the forest.

To be able to act as employers and retain control it is key that disabled people receive the funds to hire a PAt in the form of direct payments. This form of transferring funds directly to an assistance user is called a personal budget. Personal budgets are only fully empowering when no contributions from the user´s personal incomes are necessary and the budget covers costs related to the PAt.

A major problem connected to existing PA-schemes are the bad working conditions of personal assistants. In many countries, renumerations are low which makes it unattractive to pursue this career. To improve this situation, PAts should be protected by collective bargaining agreements.

EU funding to improve the provision of personal assistance

The European Union continues to invest significant amounts of resources into the maintenance and expansion of institutions. The ENIL UNCRPD shadow report and the Independent Living survey produced strong evidence in this regard. As indicated by a comparison of the European Union treaties, the regulations governing the EU funds as well as General Comment No 5 spending of EU funds on institutions is barely legal. Recently, the EU ombudsman support the view that the legal situation is much more restrictive that officially state by the European Commission and recommended to step up the enforcement.

The present article outlined the situation of personal assistance in Europe, key elements of good PA as well as source for more extensive instructions. The ingredients of good PA have been presented. The European Union and the member state should use these blueprints to adjust their investment into disability support service accordingly. This way menus of quality personal assistance can be built all over Europe for the liberation of disabled people.