On Sunday July 21 2024 Adolf had an accident that led to the stopping of his heart. Adolf is loved by many, respected by even more. He with others brought the Independent Living philosophy to Europe and he introduced it to Sweden from the United States in the 70s. Adolf lifted the concept of personal assistance with his endeavors changing disability policy in Sweden and in many other countries. People with disability grew stronger realizing they had the right to equal rights and self -determination. Adolf founded the Independent Living Institute, ILI in 1993. Before this he mobilized people and founded the STIL project in the 80s with others who also needed personal assistance.

In Sweden there are changes in the law being viewed for personal assistance. One change that is now on the table is to make the state solely responsible for personal assistance and not as it is today – a division between the state and the municipalities.

In March, results were presented from an investigation suggesting that personal assistance should be entirely decided and paid for by the state. This is something that the Swedish cooperative STIL has been lobbying for a long time. If this proposal were to go through, those people who currently have their personal assistance granted by the municipality will be transferred to the Swedish Försäkringskassan, or the national authority.

Project 81

As with the USA, the concept of disabled people controlling their own support system started with a small group of disabled people being given money to employ their own personal assistants to live a fulfilling life in the community. But this time the group were not university students, but residents of a residential home in Hampshire, England. Project 81, the International Year of People with Disabilities, appealed to the right-wing neoliberal government at that time, which favoured self-help and self-responsibility for one’s own welfare. Here, disabled people were being taken from dependency on others in expensive care homes, to the independence of their self-directed support in the community.

In 2012, the Polish parliament, which had a majority of the centrist parties, ratified the CRPD. Despite this, nothing was done to make personal assistance available and regulated at central level. Until 2019, this kind of support was mainly organised only in Poland's largest cities. This was done by NGOs, not controlled by persons with disabilities. The services were funded by European Union funds or city budgets. A report prepared by independent researchers, commissioned by the government's Office for Persons with Disabilities shows that between 2016 and 2020, personal assistance was not implemented fully in accordance with the CRPD and General Comment 5 anywhere in Poland. There was a lack of regulations specifying in which activities the assistant could support the service user. Interruptions in the implementation of services, even lasting several months, were frequent. The users could not decide who would become their personal assistant. Service hour limits were not tailored to individual service users' needs. Children and young people were not able to access personal assistants. In practice, people living in rural areas and small towns were not able to access these services.

Malta small’s size lends itself ideal to implement changes; word travels fast, unlike the propensity to challenge the status quo. Along the years, Malta’s disability rights movement has been sporadic, often led by parents who placed most of their concerns on what happens to their sons and daughters once they pass away. The charity model was at the forefront, with the Church opening a number of larger residential institutions. Whilst a stance that was much needed at the time, when persons with disabilities were kept hidden from society, it remains a dominant perspective to this day, with institutions generally perceived as essential and beneficial.

As you know there are different ways of organizing personal assistance in the Finnish model: purchase service, service voucher and an employer model. The Threshold Association favours especially the employer model, because it provides the best starting point for the independent living. Personal assistance has been a subjective right for the disabled people in Finland since 2009.

The Law on Personal Assistance (PAA) was adopted in Bulgaria in 2018 after a long struggle by several groups of people with disabilities. An initial initiative was the Center for Independent Life (CIL) - a non-governmental organization of disabled people with over 20 years of expertise in protecting the rights of disabled people and their empowerment. In 2009, a group of people with severe physical disabilities, with the support of lawyers, studied the European and world experience and, especially that of Sweden and Norway, and developed a draft of the PAA. In it, they combined the best practices from the experience of other countries and complied with the current Bulgarian legal norms.

Nordic independent living organisations join forces to systematically exchange documentation and the development of the situation of personal assistance in each country. This way trends and threats can be identified in order to organise counter activity.

Iceland, Finland, Sweden, Denmark, and Norway have similar welfare states, and have all ratified The Convention on the Rights of Persons with Disabilities (CRPD). In the Nordic Council and other fora, Nordic politicians exchange ideas on political reforms on issues such as personal assistance (PA). Governmental investigations and policy papers on PA in Norway and Sweden compare PA in the Nordic countries.

What is Peer Support and why is it important in the context of Independent Living

Peer support is one of the pillars of Independent Living and an essential element for the self-determination of disabled people.

Peer support can be described as the help and support that people with lived experience can give to other individuals in a similar situation. For example, it can refer to support provided by someone using personal assistance (PA) to another person using a PA. Or, to somebody who has lived in an institution in the past to other people still living in institutions. This support may be social, emotional or practical (or all of these), and can be life changing.

Personal Assistance - What should personal assistance look like?

Teodor Mladenov, Senior Lecturer at the University of Dundee and Coordinator of ENIL’s Independent Living Research Network

Introduction

This article is part of a special issue on Personal Assistance (PA) of the Disability Rights Defenders Newsletter published by the Independent Living Institute.

Avskaffade institutioner på agendan

Den femte maj firas varje år Independent Living Day och 2023 uppmärksammades detta bland annat med en konferens i ILIs lokaler i Farsta utanför Stockholm. Det var ett tjugotal åhörare som samlades för att lyssna på föreläsningar, ställa frågor och diskutera ämnet avinstitutionalisering i Sverige.

 This document was co-created in May 2022 by Teodor Mladenov (University of Dundee), Jim Elder-Woodward (Scottish Independent Living Coalition), Mari Siilsalu (Independent Living Institute), Ines Bulic Cojocariu (European Network on Independent Living), Nadia Hadad (European Network on Independent Living), and Lilia Angelova-Mladenova (European Network on Independent Living).

(Daniela Komanická)
Stockholm 21st September 2021

1 oktober 2021

Till: Socialdepartementet

Diarienummer: S2021/04587

Vår kontaktperson: Jamie Bolling, jamie.bolling@independentliving.org

Remissinstans: Independent Living Institute

Independent Living Institute (ILI) är en ideell tankesmedja och projektplattform inom medborgarrättsrörelsen Independent Living av personer med funktionsnedsättning. Våra grundläggande principer är självbestämmande, självrespekt och empowerment (bemäktigande och bemyndigande). Vi lämnar här vårt remissvar på betänkandet SOU 2021:37 Stärkt rätt till personlig assistans.