Problem addressed
A general problem faced by persons with disabilities when applying and accessing the appropriate housing and support arrangements is that the existing systems for allocation and assessment of housing and support can be inflexible and might not be equipped to accommodate the range of people applying for housing with supports and the diverse needs of the final users of the service. Since there are a multitude of stakeholders, services and professionals involved in housing and support provision, such as government departments, local government, municipal authorities, state, voluntary and private health care and social services providers, non-governmental organisations and voluntary organisations, it is necessary to develop a transferable assessment framework on housing and support needs that could be used, shared, widespread and understood by all these different stakeholders. As such, the TOPHOUSE project addresses the need to create systemic and professional approaches to the assessment of housing and support needs, in light of the paradigm established by the of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD) since its approval and ratification across the EU, which in the case of Spain dates from 2008. The UNCRPD sets new standards on how to design services, overcoming the medical paradigm relying when assessing the skills, abilities and capacities of the person entrenching a model based on treatment, medication and rehabilitation that conducted to the use of institutions, hospitals, nursing homes or other type of housing services with patronising and paternalistic protocols that could be considered institutionalising and that extended social services and other service providers.
Instead, the new standards of the UNCRPD based on principles such as person-centred planning, coproduction, self-directed support and supported decision making urge governments, service providers, professionals and society in general to think about disability in a new light and to reconceive services supporting persons with disabilities as community-based, which require new and innovative forms of assessing the needs of persons with disabilities to build and deliver housing and support services based on the community. This new paradigm also requires cross-sector cooperation through formal and informal support networks and between public and private stakeholders.
Innovative solution
The project started in 2017 with the objective to introduce a methodology, based on coproduction, to provide an alternative way to the traditional clinical and biomedical approach to assess the needs of persons with disabilities either experiencing psychosocial disabilities or in a context of institutionalisation, reinstitutionalisation (i.e. a person released from acute services on a mental health facility and being shortly readmitted due to different factors) and homelessness. In this context, the innovation aspect is related to the fact that the person with a disabilities (i.e. service user). is at the centre of the intervention
Over the lifespan of the project, from December 2017 to November 2019, TOPHOUSE partners developed tools aimed at service providers and professionals in the region of Girona who are willing to embrace this new paradigm and work towards the full inclusion of persons with disabilities in society. Each tool created within the project serves a specific purpose, but the combination of all tools represents a consistent and ready-to-implement model to guide service providers on how to practically achieve the standards set by the UNCRPD. For instance, the different tools developed helped streamline the different aspects that need to be considered by professionals to realistically provide a long-lasting support to persons with disabilities in their exercise to independent living. The first tool developed by the project is the ‘Top House Assessment of Individual Needs and Rights’ which aims at strengthening persons with disabilities’ awareness of their own right. deals with the self-identity of the person with disabilities and the level of awareness of their own rights. Subsequently, the scales on housing and support help professionals and service users define their needs in relation to different topics (see below) related to the sphere of housing and the sphere of supports and, more importantly, define the steps to do to materialise the support in those areas. Finally, the TOPHOUSE model includes an info package for organisations to improve the level of cross-sectorial cooperation as general consensus and practical experience leads the consortium to believe that at some point of the process, actions, interventions or resources from externals organisations and professionals (public, private, health services or social services) will be required. And lastly, the TOPHOUSE Training Package is designed to train professionals from different organisations and service providers on the use of the materials with practice-oriented exercises and case-scenarios. Working closely with public services has contributed to accelerate the process of deinstitutionalisation, achieving the closure of mental health institutions in the Girona region (North East Catalonia), as well as providing community-based services and delivering a unique and recognised supported decision-making service to persons with disabilities.
The TOPHOUSE materials can serve as a foundation for services willing to align with the UNCRPD, as they are not only conceptualised and designed by professionals but also co-created by ‘experts by experience’ (i.e., service users who have experienced themselves psychosocial disabilities, have been institutionalised or in a homeless situation) themselves. Co-production is a strong element of the whole TOPHOUSE package. In the phase of development a series of focus groups were conducted with ‘experts by experience’ of each organisation to help professionals identify the spheres where they could require support to exercise their right to live independently. In the case of Support-Girona, experts by experience were persons already supported by the organisation that live at their own home (alone, with flatmates, etc.) and experts by experience of Fundació Drissa (an NGO providing employment services in Girona that also coordinates domiciliary services for persons with psychosocial disabilities). The elements and spheres of support identified by professionals and experts by experience (namely: Budgeting money – Financial; Shopping; Housekeeping; Cooking; Laundry; Family; Making friends & Social relations; Health; Hygiene; Mobility & Transport; Work & Employment; Formation & Education; Legal & Administrative; Leisure & Culture) served as the starting point to design a questionnaire where the person could self-reflect about their own support needs and pinpoint the level of support they required in each sphere. Experts by experience also helped professional test and refine the materials in multiple aspects (vocabulary, order of the questions, appropriateness of a question, etc.). The materials developed and in particular the housing and support assessment scales are modular and flexible in their delivery as a person may not necessarily require the ‘housing assessment scale’ if they already live at their home but may require only the ‘support assessment scale’
Key results and benefits
The evaluation of the project was carried out both internally and externally. Externally, the Erasmus+ project framework, in this case the ‘KA2 - Cooperation for Innovation and the Exchange of Good Practices’ and concretely the ‘KA202 - Strategic Partnerships for vocational education and training’, with their system of check and balances and periodical reports, ensured the quality of the deliverables and their consistency with the scope of the project. Internally, each partner has evaluated the all the materials developed by the project consortium following a holistic approach, approach involving professionals from different areas of the organisation (management, financial, social and legal area) and service users of persons supported by each organisation. This also implies that each organisation introduced the assessment framework and the methodology developed in their internal protocols, after having tested the materials during a 10-month period of time, from January 2019 to November 2019, leading to services that were not offered before to the person, such is the case of Support-Girona that, since then, has created an internal ‘housing commission’ to help persons with disabilities make their own needs assessment and mix and match the currently available housing resources – albeit scarce – to exercise the right to live independently and avoid being institutionalised.
Within the development of the project, a commission of ‘experts by experience’ reviewed the materials, tools and methodology periodically to validate the appropriateness, usefulness and relevance of the different assessment tools developed. For example, the commission of ‘experts by experience’ suggested to separate the different assessment scales in two different sets as the duration of the scales when done in a single session was quite lengthy for some persons with a disability to undertake. An example of usefulness of the scales was the fact that since then, service users or persons with support needs could not have a say on the organisation of the tasks of the ‘domiciliary support’ they receive at their own home by ‘family workers’ as it was organised and managed by professionals from ‘social services’ or their ‘guardians’. Since this trend is reversed it is more likely that persons with disabilities who can arrange their own domiciliary support maintain a community-based housing resource in the future, either a house leased in the ordinary market or a house they accessed via the protected housing market.
The coordinated efforts made by the consortium have consolidated a model that led organisations and professionals to accelerate the deinstitutionalisation process and supported decision-making in their region.
Key results of the project can be explained from different points of view, as the project has different impacts and results, depending on whether the focus is on organisations, professionals or final service users (i.e., persons with disabilities or persons with support needs without a standards disability diagnose).
Organisations
1. Increased cooperation of NGOs and service providers in the social sector with other NGOs and services in their country.
2. Enhanced service delivery, as the proposed model overcomes traditional models based on a paternalistic approach of assistance and assessing disability by medical parameters only.
Professionals working in the social sector or NGOs providing support
1. Expansion, upskilling and reskilling of professional competencies.
2. Increased networking with other professionals.
3. Improved transparency between the professionals and the user, as coproduction is the basis of the methodology proposed.
Persons with support needs
1. Increased self-determination.
2. Participation of the users in defining their own support.
3. Increased awareness of rights.
4. Increased awareness of their own situation.
5. Increased sense of agency / citizenship and balance of power between them and the professionals that support them in different services.
Potential for mainstreaming
Whilst the TOPHOUSE Project was already developed and deployed by EU-based partners, the potential for mainstreaming its outcomes has been highlighted by the fact that its objectives, as well as the materials produced, tackle international and global challenges, transcending national borders. The final products (i.e., methodologies for assessment of rights, housing or support needs, training packages and guidelines for cooperation) benefitted from the know-how of every partner, especially from those that supported deinstitutionalisation strategies in their regions.
It is especially important to note that the practice described continues to have an impact also after the end of project. In early 2019, Support-Girona explained the preconditions and the situation in the Girona Region and showcased the materials and methodological approach from the TOPHOUSE project with key professionals from the United Nations Human Rights Committee as well as a broad range of South American NGOs (mainly in Colombia and Peru) active in the implementation of the UNCRPD at different levels. Support-Girona, using its experience in the development of the TOPHOUSE products has contributed as an inspiration to draft the official ‘Guidelines and national protocol for the assessment of support under law 1996 of 2019’ (Lineamientos y protocolo nacional para la valoración de apoyos en el marco de la ley 1996 de 2019), a highly relevant document in Colombia after the approval of the pioneer legal framework abolishing guardianship and substituted decision-making regimes in the country.