CONTRIBUTIONS TO THE DRAFT BILL AMENDING THE CONSOLIDATED TEXT OF THE GENERAL LAW ON THE RIGHTS OF PERSONS WITH DISABILITIES AND THEIR SOCIAL INCLUSION, APPROVED BY ROYAL LEGISLATIVE DECREE 1/2013, OF NOVEMBER 29, AND LAW 39/2006, OF DECEMBER 14, ON THE PROMOTION OF PERSONAL AUTONOMY AND CARE FOR PERSONS IN SITUATIONS OF DEPENDENCY, FOR THE EXTENSION AND STRENGTHENING OF THE RIGHTS OF PERSONS WITH DISABILITIES TO INCLUSION, AUTONOMY, AND UNIVERSAL ACCESSIBILITY IN ACCORDANCE WITH ARTICLE 49 OF THE SPANISH CONSTITUTION.
INTRODUCTION:
Given the opportunity to provide input on this draft bill, we have joined forces: the Independent Living Association and Office of Andalusia (VIAndalucía) and the Platform for Inclusive Education Quererla es Crearla, both organizations imbued with respect for the UNITED NATIONS CONVENTION ON THE RIGHTS OF PERSONS WITH DISABILITIES. From this perspective, we submit our contributions, with an emphasis on those articles we believe are subject to improvement.
CHAPTER I
Object, definitions and principles
Article 2. Definitions
The definitions of Ableism and Deinstitutionalizationare added; this recognition of both the discrimination that affects us and its consequences at an administrative level is very good, as it is institutionalized by the ableism that operates in each and every relationship with the administrations we are obliged to turn to, from those related to health, to education or employment. Educational and social inclusion is the best formula to end discrimination and its consequences. Section q) of Article 2 must make the need for changes at a legal level to eliminate institutions crystal clear. It is a positive sign to open paragraph 49 of the Guidelines on deinstitutionalization, including in emergency situations, and paragraph 58 of General Comment No. 5 (2017) on the right to live independently and to be included in the community.
“The transition towards independent living implies the progressive elimination of existing institutional infrastructures and services within clearly defined timeframes. These timeframes facilitate coordination and planning between the relevant departments and levels of government. In general, timeframes for the progressive elimination of institutions are more effective when they are realistic, viable, communicated to all stakeholders in accessible formats, and facilitated by the allocation of sufficient financial resources. It is also important to plan for the future use or repurposing of institutional facilities once they are vacated, to avoid incurring additional and unnecessary costs.” (EUROPEAN COMMISSION. Guidance on independent living and inclusion in the community for persons with disabilities in the context of EU funding. C/2024/7188. Section 2.)
“17. States parties must recognize that living independently and being included in the community are concepts that refer to living environments outside of residential institutions of all kinds, in accordance with Article 19 of the Convention. Regardless of their size, purpose, or characteristics, or the duration of internment or deprivation of liberty, an institution can never be considered to be in compliance with the Convention.” (Guidelines on deinstitutionalization, including in emergency situations)
Amendment to the Dependency Law
Article 2: Under no circumstances shall restrictions or restraints be permitted. Sections 13 and 14 do not need to be added.
It must be explicitly stated in a section of this article that deinstitutionalization includes the closure of institutions, as indicated by General Comment No. 5 (2017) on the right to live independently and to be included in the community:
“58. Deinstitutionalization also requires systemic transformation, which includes the closure of institutions and the elimination of institutionalization norms as part of a comprehensive strategy, together with the establishment of a range of personalized support services, including individualized transition plans with budgets and timelines, as well as inclusive support services. Consequently, a coordinated inter-institutional approach is needed to carry out reforms, budgets, and attitudinal changes at all levels and sectors of government, including local authorities.” (General Comment No. 5 (2017) on the right to live independently and to be included in the community)
Article 4: Paragraphs 2 and 3 are aspirations to be developed in future regulations.
CHAPTER III
Right to Personal Autonomy, Independent Living and Inclusion in the Community
Article 6. Respect for the autonomy of persons with disabilities.
3. Likewise, they shall promote that persons with disabilities have access to a variety of home, residential and other community support services, including personal assistance and, where appropriate, animal assistance, as necessary to facilitate the development of independent living projects and their inclusion in the community, and to prevent their isolation or separation from it.
Although the figure and provision of personal assistance are contemplated as part of the right to independent living, we still lack a regulation that facilitates its access and avoids creating inequalities between territories. There are many autonomous communities that have not normatively developed this provision, hindering the possibilities of hiring and self-management by the user, turning this support into a residual and unattractive resource.
Article 7. Right to equality.
4. Likewise, public administrations shall protect with particular intensity those persons or groups of persons who are especially vulnerable and exposed to multiple and intersectional discrimination…
It does not explain what this intense protection consists of, which runs the risk of remaining a mere empty gesture. To remedy this, a point 6 should be added to establish the priority and improvement of women’s access to personal assistance, housing, employment, and other community services.
Article 11. Prevention of impairments and the intensification of disabilities.
Although it is primarily a medical article because it is dedicated to health, it is about prevention, and we cannot forget the determining role that the social factor plays in the prevention of illnesses and disabilities, especially at the mental level. A fundamental tool is inclusive education as a creator of coexistence, community support networks, and personal development, as stated in Article 24 of the Convention:
1. …, States Parties shall ensure an inclusive education system at all levels and lifelong learning, directed to:
The full development of human potential and sense of dignity and self-worth, and the strengthening of respect for human rights, fundamental freedoms and human diversity;
The development by persons with disabilities of their personality, talents and creativity, as well as their mental and physical abilities, to their fullest potential; …
Article 13 bis: Comprehensive and community-based mental health care.
3. The following are expressly prohibited:
A section f) should be added stating that not the slightest lapse will be permitted when it comes to allowing mechanical and chemical restraints in any context, especially within the educational framework.
CHAPTER IV
Right to education
Article 18. Content of the right
2. … through the regulation of supports and reasonable accommodations that ensure the right to education on the basis of inclusion and…
To align with the Convention, it should state: “through the necessary supports and accommodations that ensure the right to inclusive education”.
3. The schooling of these students in special education centers or educational units that substitute them shall only be carried out when, exceptionally, their needs cannot be met within the framework of the measures for attention to diversity in mainstream schools, always taking into account the opinion of the mothers, fathers, or legal guardians and listening to the students with disabilities, for which they shall have the means and accessibility supports that ensure their participation in this process.
Although there is an improvement on this point, it still maintains the possibility of segregation in special centers and specific classrooms, thereby contravening the principle of inclusion mandated by the Convention. Special education centers must be transformed into resource centers for mainstream schools, as stated in the Fourth Additional Provision of Organic Law 3/2020 of December 29, which amends Organic Law 2/2006 of May 3 on Education. It has already been five years since the approval of this law, and not only have there been no changes in this regard, but the number of children referred to special education centers and/or specific classrooms has actually increased, and their numbers have also been rising.
Article 22: Right to universal accessibility
Given that the deadlines indicated so far have not been met, it would be absolutely necessary to set new deadlines and comply with them.
Article 43:
A point must be added establishing that the right to inclusive work and employment is fully enshrined in accordance with Article 27 of the Convention and General Comment No. 8 of the CRPD, establishing clauses to ensure that we are not talking about segregated employment.
Article two. Amendment of Law 39/2006 of December 14, on the Promotion of Personal Autonomy and Care for persons in situations of dependency.
Article 19. Personal assistance service through financial provision.
Article 23 bis. Personal assistance service.
Although the purpose of consolidating personal assistance is expressed, no regulation is presented that ensures the user’s self-management regarding direct hiring, freedom to choose the personal assistant’s profile, creation of a Special Regime similar to that of domestic workers, or ease of terminating the contract given the special characteristics of the employment relationship.
Socio-sanitary training for personal assistants should not be a requirement, as the great diversity of potential users entails a diversity of needs and, therefore, different profiles of personal assistants.
The benefit continues to be linked to economic capacity. Considering that personal assistance is a subjective right, this relationship is out of place.
There is no mention of the benefit amounts. Current amounts do not allow for covering the real needs of users. An increase in the amounts is necessary to account for different contingencies (vacations, medical leave, social security contributions, …).
On the other hand, the entire Article 23 bis could be included in Article 19. In our opinion, the service user must be able to decide whether their personal assistant meets the necessary professional conditions to perform their tasks with sufficient quality.
The following must be added to Article 19: The financial amount of the personal assistance service shall be updated annually, at least, according to the cost of living. It shall be sufficient for the social inclusion and participation of the user.
*Many of these issues would be easily resolved if, from the beginning, the definition of personal assistance provided in paragraph 16, section “d” of General Comment No. 5 (2017) on living independently and being included in the community were adopted:
Personal assistance. Personal assistance refers to human support directed by the interested party or the “user” that is made available to a person with disabilities as an instrument to enable independent living. Although the forms of personal assistance may vary, there are certain elements that differentiate it from other types of personal help, namely:
i) The funding for personal assistance must be provided on the basis of personalized criteria and take into account human rights standards for decent employment. It must be controlled by the person with disabilities and assigned to them so that they can pay for any assistance they need. It is based on an assessment of the individual needs and life circumstances of each person. Individualized services must not lead to a reduction in the budget or a higher personal payment;
ii) The service is controlled by the person with disabilities, which means they can contract services from a range of providers or act as an employer. Persons with disabilities can customize their service, that is, plan it and decide by whom, how, when, where, and in what manner it is provided, as well as give instructions and direct the people who provide it;
iii) This type of assistance is a personal relationship. Personal assistants must be hired, trained, and supervised by the persons receiving the assistance, and must not be “shared” without the full and free consent of each of these persons. Sharing personal assistants could limit and hinder self-determination and spontaneous participation in the community;
iv) Self-management of service provision. Persons with disabilities who require personal assistance may freely choose the degree of personal control to exercise over the provision of the service based on their life circumstances and preferences. Although another entity may perform the role of “employer,” the person with disabilities always retains the power of decision regarding the assistance; they are the one who must be consulted and whose individual preferences must be respected. Control over personal assistance may be exercised through supported decision-making.
Article 24 bis: In sections 2.a and 2.b, according to the European Commission document of November 28, 2024, the user must have “freedom of choice for persons with disabilities regarding where and with whom to live and from whom to receive assistance”. This must be made clear in this article and in all those of this Law referring to institutionalized environments.
Article 25. Residential care service.
Given the preponderance of the need for deinstitutionalization in various international documents, we believe that, except in very specific cases, residential care should be eliminated.
Article 33. The participation of beneficiaries in the cost of services.
Section 3, letter b:
b) In cases of residential care services and care and support services in housing, modality a), a minimum amount for personal expenses shall be guaranteed, intended to promote physical and emotional well-being, the autonomy of individuals, and their inclusion and participation in the community.
The amount for personal expenses shall be managed and administered by the person in a situation of dependency themselves.
Seventh additional provision. Authorization for the creation of the State Center for Competencies in Social Innovation (CECIS) Consortium.
We do not see the need for the creation of a new body for social innovation.
OVIAndalucía (Independent Living Office Andalusia) / INCLUSIVE EDUCATION. QUERERLA ES CREARLA
