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D. Independent living
D1. Choice of living arrangements
The right to choose where and with whom to live requires physical conditions of the homes that make it possible. Most of Spaniards live in multi-unit housing or apartment buildings, and there are several laws applicable to these living arrangements, both public and private properties. The owner or the landlord is responsible for meeting the requirements for an accessible building. There is funding available for different adaptations and the removal of architectural barriers that can be requested by disabled people to adapt their houses, or by a Community of dwellers if additional adaptations (e.g. elevators, ramps, etc.) are required. Each autonomous community has own accessibility laws that contain general principles, objectives and definitions on what accessible housing is. The technical norms that determine how accessibility should be understood in different communities are regulated by national laws (Observatory of Universal Accessibility in housing in Spain 2013; 24). The National Statistics Institute (INE) considers a building accessible when a person in a wheelchair can access it from the street without any help of another person (Observatory of Universal Accessibility in housing in Spain 2013, page 30). The main national regulations on accessibility are Law 39/2006 of 14 December on Promotion of Personal Autonomy and Care for Dependent Persons and Law 51/2003 (LIONDAU). Royal Decree 233/2013, of April 5, regulates the State Plan 2013-2016 for the promotion of housing rental, building rehabilitation, regeneration and urban reconstruction. This Plan indicates that subsidies will be provided for the implementation of different programmes. Most recently, the State Housing Plan for 2018-2021 was introduced by the Royal Decree 106/2018, of 9 March. This Plan includes support for home renting and purchasing aimed at people with disabilities, young people, seniors and large families.
Still, in Spain, segregated residential options continue to be the main option for people with the most severe intellectual disabilities, and public administration organisations spend most resources on these. However, there are choices for disabled people to live independently in their own homes and in the community, resulting from the passing of Law 39/2006, of 14 December, on the Promotion of Personal Autonomy and Care for Dependent Persons, and Law 51/2003 of 2 December on Equal opportunities, non-discrimination, and universal accessibility for persons with disabilities. However, there are no structured policies promoting independent living that follow the UN Convention on the Rights of Persons with Disabilities. Only some groups of people with disabilities and some disability associations are playing a role in promoting independent living. In addition, there are important differences among Autonomous Communities in applying new Acts and in developing new regulations to facilitate independent living.
Law 39/2006 can be considered a significant new proposal for future policies to support people living in the community rather than in institutions as it regulates the basic conditions that should guarantee equality in the promotion of personal autonomy and care for dependent persons, by creating a System for Autonomy and Care for Dependency (SAAD). With the SAAD, all elderly or disabled people, who cannot fend for themselves, will be attended to by the government ensuring access to public social services and economic performance more suited to their needs. Nevertheless, people with mental health conditions may be deprived of their liberty and (placed in an institution based upon a legal decision.
On 29 November 2018, the Plenary of the General Council of the Judiciary has approved a report that endorses the draft law prepared by the Ministry of Justice to reform civil and procedural legislation on disability issues. The purpose is to adapt this legislation to the rights set forth in the UN Convention and, more specifically, in Article 12, which states that persons with disabilities have full legal capacity and obliges the State to implement appropriate measures that allow people with disabilities, having access to the support necessary in each case, to fully exercise their legal capacity. It is expected that this draft law will have positive consequences for the right to choose with whom and where to live.
According to the document published by the State Observatory of Disability on the Institutionalisation of people with disabilities in Spain (2015), the institutionalisation of people with disabilities is small in relative terms, as less than 7% of the population with disabilities reside in centres. It is, however, a considerable figure in absolute terms, of more than 300,000 people. The population with disabilities residing in these centres is mostly composed of people with intellectual disabilities and/or mental illness.
Thus, in Spain, segregated residential options continue to be the main option for people with the most severe disabilities, and public administration organisations spend most resources on these, but there are choices for disabled people to live independently in their own homes and in the community resulted from the passing of Law 39/2006 of 14 December on the Promotion of Personal Autonomy and Care for Dependent Persons, and Law 51/2003 of 2 December, on Equal opportunities, non-discrimination, and universal accessibility for persons with disabilities. Both Laws encourage people with disabilities to live in their community.
D3. Quality of social services
The quality of the social services provided to people with disabilities in Spain is based on: (1) the compliance with the quality standards concerning housing; and (2) the quality of life experienced by people with disabilities in this regard.
On the compliance with the quality standards on housing, the Autonomous Communities or the competent Administration fund the centres that provide services to people in situation of dependency. Similarly, private entities will be funded for each of the services that they provide. Quality requirements and standards are established in the are as of materials and equipment and human resources.
On the quality of life experienced by people with disabilities, a study by Huete and colleagues (2015) evidences that people with disabilities face additional expenditures on the acquisition of goods and general services (such as transportation), or on goods and services specifically related to disability, such as technical assistance and support products, home adaptations to improve accessibility, or personal assistance. However, the average income of people with disabilities is often below the average for the whole population.
General plans such as the National Action Plan for Social Inclusion 2013-2016, the Strategic Plan for Equal Opportunities 2014-2016 and the Spanish Disability Strategy 2012-2020 have the advantage of increasing synergies between policies. In many Plans, disability is still included as cross-variable, regardless of whether a programme is intended for children, the elderly, young people, unemployed, etc. The inclusion of this perspective is beneficial. However, this should be followed by performance indicators that include the variable disabilities in their measures to effectively assess whether the policies are following the precepts of equal opportunities, non-discrimination and universal accessibility. At the same time, the excessively large number of programmes and policies for each stakeholder (i.e. groups at risk of exclusion) can hinder the achievement of results, creating duplication in some cases and, in others, gaps. A management or coordinating unit to follow the advances set in each strategy, plan, goal, etc. should be established. Therefore, there are still tensions between the goals of equality of opportunity, non-discrimination, universal accessibility and financial and structural constraints in respect to employment, pensions, and socials services.
D4. Provision of assistive devices at home
Royal Decree 233/2013 of 5 April that regulates the State Plan 2013-2016 for the Promotion of housing rental, building rehabilitation, and regeneration and urban reconstruction provides for subsidies to make adaptations to the buildings that meet certain conditions, and are directed to their conservation, quality improvement and sustainability and include:
- the installation of elevators, escalators, ramps or other accessibility devices, including those adapted to the needs of persons with sensory disabilities;
- the installation or endowment of support products such as cranes or similar devices that allow access and use by persons with disabilities to common elements of the building, such as gardens, sports areas, swimming pools;
- the installation of information or warning elements such as light or sound signals that allow orientation in the use of stairs and lifts.
- the installation of electronic communication elements or devices between the homes and the exterior, such as video door phones and the like.
These rules / requirements apply to the private sector and to social housing as well.
Support for assistive devices and adaptations is regulated at the level of the Autonomous Communities and there are significant differences between them. There are also financial limits for the different technical aids, and disabled people must co-fund these. Financial limits for the equipment and adaptations are determined by each Autonomous Community. Each Autonomous Community publishes yearly information on technical aids or adaptations, giving the requirements and maximum amounts payable per type of product, for example, the amount for acquisition of a vehicle and for its adaptation, for the removal of barriers in vehicles, for home adaptations, and for acquisition of hearing aids, prescription glasses and technical aids. Some requirements for eligibility are that a person must have a certified disability, be under 65 years of age, and have income within certain limits. Law 39/2006 (Article 22) includes a personal alert system as a specific communication service for the promotion of personal autonomy and for attention and care in emergency situations.
D5. Availability of personal assistance schemes
The Personal Assistant is defined as ‘the worker who performs a service that enables people with disabilities to lead an independent life, while facilitating their self-determination, personal autonomy and decision-making’. In short, it is a new service alternative, centred on the person, which allows a person with disability to live an autonomous and active life.
Since the introduction in 2007 of the Law on the Promotion of personal autonomy and care for people in a situation of dependency (Law 39/2006 of 14 December), the financial income of disabled people has become an important political issue. According to Article 2 of this Law, ‘personal assistance’ consists of a service provided by a personal assistant who assists the dependent person to perform his/her everyday tasks, with the aim of promoting his/her independent living and promoting and reinforcing personal autonomy. Nevertheless, availability of support (of types and resources) differs between the Autonomous Communities (which are 17 in Spain). Eligibility criteria are based on medical assessment of the level of dependence. As indicated by Plena Inclusion, the Law does not mention people with intellectual disabilities when it talks about the Personal Assistant.
According to the report on the Situation of Personal Assistance (PA) in Spain (PREDIF, 2015), people with functional limitations demonstrate low awareness about available personal assistance. Firstly, regarding the term itself, they are not aware of the existence of the concept of 'personal assistance' and of the professionals who may provide it. At the social level, this situation has caused a delay in its development, since there was no widespread demand and no basic social need generated around personal assistance. At the policy level, there are also many difficulties that cause that the PA service has not been consolidated yet.
Among many other difficulties posed by the state regulatory framework for access to the provision of Personal Assistance, and, in particular, Law 39/2006 of 14 December on the Promotion of Personal Autonomy and Care for Dependent Persons, it should be noted that despite being recognised as the main legal framework for promoting personal autonomy, this Law enhances access to this service, principally, in the education and labour market. However, at the level of the Autonomous Communities, it is very difficult to know in depth the legal regime of personal assistance, due to the extensive normative provisions in each of them. This 'tangle' normative base has the perverse effect of deterring the interested party in the service, by making it difficult for them to know clearly the scope and economic impact of this service.
There are also differences in the procedure for recognition and assignment of this benefit, as well as in additional documentation required. In this sense, there are significant territorial inequalities.
At economic level, there are also difficulties that cause low incidence in the application and access to PA service. It is also detected that the amounts established by the LAAD 2006 are insufficient, not only to carry out an independent living, but to even cover the necessities of basic everyday life. The benefit received does not cover the basic expenses derived from the costs associated with the worker's labour rights, which nevertheless require them to be paid. Nor can we ignore the incompatibility between the person's need to cover 365 days a year, 24 hours a day, and the workers' rights to rest.
Since 2015, the PA Working Group has been set up within the Spanish Committee of Representatives of People with Disabilities (CERMI). Its mission is to promote and speed up the development and access to Personal Assistance within the framework of the System for Autonomy and Care for Dependency (SAAD). This system provides a basic training of 50 hours, through which the future personal assistant can acquire general knowledge about personal assistance, the Independent Living movement and the disability. The distinguishing aspect of this benefit is that most of the training has to be given by the beneficiary of the service to his personal assistant, according to his needs and preferences. In short, the person with a disability assumes an active role in making decisions.
D6. Income maintenance
Law 13/1982 on the Social Integration of the Disabled People (LISMI) establishes social and economic benefits for persons with disabilities in the fields of social benefits, social security, education, work and housing. There are two types of pensions in Spain for disabled people: Contributory and Non-Contributory. The first one relates to the pensioner’s wages and number of years worked. The Non-Contributory pension is for disabled people who have not worked; it ensures medical care and social services. The criteria for eligibility are: being over 18 and below 65 years of age; being a Spanish resident or to have lived in Spain for the last five years; having an average of disability over 65%; and finally there is an income criterion. Other specific groups to consider with regard to additional improvements in the lowest pensions are: pensions of the Obligatory Old-Age and Disability Insurance (SOVI), which is being phased out; social welfare pensions for the sick and elderly; and those under the repealed Law on the Social Integration of the Disabled.
D7. Additional costs
Law 13/1982 on Social Integration of Disabled People (LISMI) establishes social and economic benefits for persons with disabilities in the fields of social benefits, social security, education, work and housing. Additional benefits for disabled people are the Minimum Income Guarantee Subsidy, the Personal Assistant Subsidy, the Mobility and Transport Subsidy, and Pharmacy and Medical Care. As a consequence of Law 51/2003 and Law 39/2006, more services for disabled people and their families are available. It has had a significant impact on service delivery, using personal assistance budgets, direct payments, allowances to individuals or their care providers, respite care, living arrangements and work rehabilitation services.
D8. Retirement income
Retirement income for persons with disabilities is managed in the same way as for other people: if they have been working they get the same money. Royal Decree 1851/2009 of 4 December established the earlier retirement of workers with disabilities equal to or above 45% from 65 to 58 years of age. In the past, there was the Obligatory Old-Age and Disability Insurance (SOVI), but it is no longer available, although there are people who are still receiving it.