Spain has had a law declaring personal assistance to be a right since 2006, but the law is not applied in practice. Instead there are various pilot projects. Catalonia has two such projects, one at the regional level and one operated by the Independent Living movement in the city of Barcelona.
Mati Febrer translated Sian Vasey’s book on assistance into Spanish.
The Independent Living philosophy came to Spain in the early 2000s. In 2001 the online network Foro de Vida Independiente formed and in 2003 a European Conference was held in Tenerife, at which Adolf Ratzka was one of the speakers.
In October 2010 I met members of the Independent Living network in Barcelona. Mati Febrer, now 57 years old, says she first came in contact with Independent Living when searching on the Internet. She was so inspired that she translated the book “The Rough Guide to Managing Personal Assistance” by Sian Vasey into Spanish.
Mati lived in an institution for a long time, but began to protest in various ways in the 1980s. Among other things, she smuggled out a video about abuses at the institution that was aired on television. The video generated public discussion as well as some distrust among some of the residents at the institution.
After the Olympic Games in Barcelona in 1992, Mati Febrer struggled to move into the vacant apartments built for the Paralympics. She was finally able to do so, but the necessary assistance was handled by a healthcare company. She continued the struggle to control the assistance provided.
Now Mati Febrer is participating in a pilot project with assistance controlled by the users. (Read more about the assistance project in an article from 2008 in an interview with Miriam Enriquez Moscoso. She subsequently passed away and is missed by her friends in the network.) Spain - Spaniards are fighting for more personal assistance
But Mati Febrers does not live completely on her own. She continues to live in the Olympic Village, but because the apartments have room for two people the city rules require sharing with someone else. “It becomes quite a hassle in the long run,” says Mati.
The Independent Living Network in Barcelona began to meet in 2005 to draft applications for money to hire their own assistants.
“We had no experience of municipal projects,” says Nuria Gómez Jiménez, one of the younger people in the group, who today serves as project coordinator.
The City of Barcelona approved their application in 2006, after prior rejection by the regional parliament, the Generalitat. That same year, Spain adopted the Personal Autonomy and Dependent Care Law, which includes personal assistance as a right.
The Catalan interpretation of the law and implementing regulations in the area came in 2007. Spain’s maximum limit of EUR 833 per person and month was raised to EUR 1,300 in Catalonia. Converted into hours, it means a maximum of about five hours of assistance per day. Only those with the most “critical” disabilities are eligible (such information is registered in Spain). In addition, the recipient must study or work in order to be granted personal assistance.
Nuria Gómez Jiménez is coordinator for the assistance project in Barcelona
However, the Independent Living network in Barcelona is running a pilot project that does not follow these rules; instead, each applicant receives the sum requested for assistance. The project has been extended from year to year.
In order to get the project the IL network had to compromise its principles of not forming associations and working with a zero budget. Oficina de Vida independiente (OVI) is now a cooperative and a legal entity that negotiates directly with the city. If the project becomes permanent, there will be a frame agreement with the city.
“Our goal is for each person to be able to get the number hours of assistance needed, given current economic conditions,” says coordinator Nuria Gómez Jiménez.
In addition to financial matters, the IL network stresses peer support, by strengthening one another to achieve autonomy.
“Previously, we were not very good at autonomy as individuals,” says Nuria Gómez Jiménez. “And autonomy was the goal.”
ECOM, an organization for people with disabilities that roughly corresponds with DHR in Sweden, is running another pilot project with 52 participants. This project, which receives funding from the regional parliament in Catalonia, also includes people in rural areas where the physical environment is often inaccessible. Sometimes neighbors are critical that outsiders come in and take care of what should be family responsibilities according to traditional values.
María José Moya Olea has coordinated ECOM’s assistance project and sees the personal growth of participants as the greatest gain.
“Assistance has enabled many people to move into their own homes, as well as to marry, get a job or start studying,” she says. People are now able to do what they want with their lives.
“The assistance project has taught us to be more independent as individuals,” says María José Vázquez Arias, chairperson of ECOM.
There have also been many organizational lessons. A failed attempt with direct payment to ten of the users was made in the beginning. Conflicts arose and damages had to be paid to hastily dismissed assistants. The comprehensive evaluation from 2008 also shows that virtually all assistants are women (92.5 percent).
The two pilot projects are also being evaluated by the Barcelona City Council's Municipal Institute for People with Disabilities (IMPD).
“Evaluating the projects is very complicated,” says Roser Torrentó Sanjust, head of the IMD. “In the final analysis the question for the city is whether personal assistance is less expensive than institutional housing. If it is, then the final result is a given, but if assistance turns out to be more expensive, we have a problem,” she says.
According to Roser Torrentó Sanjust, it is politically unsustainable to pay for assistance for everyone who would like to have it. She believes that assistance is justifiable for people aged 30 to 50 who have jobs or who can enter the work force, but that institutional housing is better for a person older than 50 who does not have a job.
Antonio Centeno is a high school teacher and an Independent Living activist.
This narrower approach is also reflected in the recent regulation for personal assistance in Catalonia. It excludes people older than 64, children and anyone with an intellectual disability.
But in reality, even those who truly belong to the group covered by the national Act from 2006 have not received any assistance – even though the law is binding, just like the Swedish Act concerning Support and Service for Persons with Certain Functional Impairments.
“It’s an immutable law,” says Antonio Centeno, a member of the IL network who is a high school math teacher.
“All we can do is pursue this in court,” he says.
He refers to the UN Convention on the Rights of Persons with Disabilities, in which Article 19 mentions living independently in the community.
“The movement toward greater human rights cannot be stopped,” says Antonio Centeno. “We will ultimately be victorious.”
“They can turn off the flow of money, but our movement cannot be stopped,” adds Nurio Gómez Jiménez.
The Independent Living gang is clearly willing to fight for their rights. The more traditional organization ECOM’s president José María Vázquez Arias admits that the IL network in Barcelona is a role model.
“They are more aware and knowledgeable of their rights than our members are,” she says.
Mati Febrer from Independent Living is somewhat skeptical about how the established disability movement uses terms such as independence, autonomy and independent living.
“Sometimes people start to use our concepts for assistance, while the content remains a kind of home help service, just an extension of the family,” she says.
The European Independent Living office (ENIL), which I visit in Valencia, raises similar concerns
“Many people want to highjack the term independent living,” says Marisol Rojas Fojas at ENIL. “We have to do a better job of protecting what we have built.”
Emil Erdtman interviewed Mati Febrer, Nuria Gómez Jiménez, Antonio Centeno and others in October 2010
People with disabilities were an important force during the democratization of Spain in the 1970s.
They formed organizations and regularly protested by locking themselves in various government offices to demand their rights.
Today there are over 200 associations for people with disabilities in Barcelona. Some belong to established organizations, such as the national partner organization CERMI or ECOM and ASPAYN, which organize people with physical disabilities. ONCE, the organization for people with visual impairments is also a force to be reckoned with, especially financially.