LADAPT, France, - Living Together, Equal and Different (Vivre ensemble, égaux et différents)

Organisation: LADAPT- Mission: Living Together, Equal and Different (Vivre ensemble, égaux et différents)

Foundation year: 1929- Legal type: Association Declarée Reconnue d’Utilité Publique

PéVA (Pédagogie de la Vie Autonome) or Pedagogy of Independent LivingSummary description(max. 400 words)The Pédagogie de la Vie Autonome (PéVA) or Pedagogy of Independent Living program has been run by the Institut du MAI -école de la vie autonome since 1996 in Chinon, France and has been affiliated with LADAPT since 2016.

PéVA is a three step pedagogical program with the aim of independent living at home for persons with severe motor disabilities. PéVA puts forth a rights-based approach to independent living rather than an aidbased approach. It operates with a posture of empowerment, with the aim of training those with severe disabilities to live an autonomous and independent life and, to that end, ultimately granting participants the ability to move into a residence of their own.

The three stages of PéVA are carried out in an average of 4 years and 21 training modules. These modules allow the client to repeat individualized, practical scenarios that they would encounter in daily independent living. In the first stage of PéVA, the clients live in an apartment at the Institut du MAI, in the second stage they move to one of the institute’s apartments in the city center of Chinon, and in the third and final stage they move to an apartment in a city of their choice. Throughout the entire process, the client is accompanied by a team of professionals made up of occupational therapists, counselors, nurses, caregivers, and coordinators. One month after each stage has begun, and then every three months afterwards, an evaluation is carried out to assess what is going well and areas where additional support is needed.

Following the third stage, the PéVA team follows clients on an as-needed basis to ensure social integration into their new community. Individuals are referred to PéVA by their local medico-social authorities, and it is then the choice of the client to begin the program. PéVA clients are comprised primarily of either wheelchair users who have spent most of their lives in medico-social facilities, or those with motor or cognitive impairments that inhibit their ability to live 3independently. Since the introduction of Péva, 160 clients with severe disabilities now live independently in their own homes.

Responsible Department or Unit LADAPT Indre-et-loire Target group/sThe target group is broadly adults with disabilities that impede independent living in ordinary settings. The majority of clients of Péva are those with motor impairments. This often includes wheelchair users or those with accompanying cognitive impairments. Methodologies and approaches used to develop and carry out the initiative; service/s or activities that were developedThe three stages of Péva involve first, living in a studio apartment at the Institut du Mai, then living in an adapted apartment in the city of Chinon, and finally moving to an apartment of the client’s choice in a city of their choice. In order to progress through these stages, 21 training modules center on 4 themes: autonomy in daily life, administrative and financial autonomy, autonomy of travel, and social life autonomy.

The modules involve the progression through various skill sets that are assessed by the client themselves along with their support team. Elements of innovation and creativity.

The realization of independent living in phases over many years is an innovation in the field. Rather than view the living needs of the individual as stagnant, Péva emphasizes the potential for growth through empowerment. The program demonstrates that independent living can be progressively taught regardless of support needs. The choice given to clients of where they would like to permanently settle in stage 3 of Péva is particularly unique: it offers the highest form of independence, uninhibited choice. Péva also puts forth innovative vocabulary for the support workers involved that helps transform the mindsets of clients and professionals alike. Support workers are called trainers and the participants are emphasized to be clients rather than accompanied individuals. The program seeks to not only transform the way the clients live but also how they fundamentally think about their capabilities.

The self-evaluation ensures that the progress of the program is entirely client-led. Péva is also innovative in that it has garnered political support as supporters have realized it is in fact a cheaper alternative for supported living than institutionalization is. It is also a uniquely transferrable method, leading to efforts to expand the program out of its native Chinon. How did the initiative demonstrate that it follows a rights-based approach?A rights-based approach is present throughout the Péva stages as the initiative of the individual to take up and carry out the Pévamethod is at the heart of the program. Nothing can be done in the Péva method without the full participation of the client. During each module, assessment of skills is collaborative, meaning the clients assess themselves and decide along with their support team when they feel ready to progress or what additional aid they may require. Péva is not only rights-based in the accomplishment of these goals, but also the goal of Péva itself is inherently rights-based: independent living. The program can, in fact, be seen as a direct application of article 19 of the UNCRPD, the right to independent living. 4Staff and resources (skills qualifications, infrastructure, materials) mobilised.

The clients of the Péva program are supported by teams of professionals which include social workers, residential support workers, medical professionals, and physical and occupational therapists as needed. The “trainers” who directly carry out the PéVA pedagogy are most often social workers. Were specific needs of the target group/s identified or people with a disability consulted in the realization of the initiative? If yes, how? (co-production approach)While the initial founding of the pedagogical approach was conceived by professionals at the Institut du Mai, it is fundamentally a gesture to restore autonomy to those with disabilities themselves. Thus, the program only progresses through the independent actions of individuals with disabilities as they evaluate their own progress and readiness to progress. The creation of the pedagogical program was influenced by the input of the clients of the Institut du Mai, the patients of the doctors involved, and the family members of the familial groups consulted.Were other stakeholders or partners (employers, families, associations, informal network, etc.) involved? If yes, how?Yes, the initial founding of the Péva program was brought about by a consortium that included parents and families of those with severe motor disabilities, as well as medical professionals working to eradicate institutionalization in the region of Indre-et-Loire.MONITORING AND EVALUATIONWhat have been the mainimpacts on your users/clients, staff and the organisation?Beyond the success of having 160 PéVA clients currently living independently in homes of their choosing, clients have also reported major changes in how they view themselves, their capabilities, and their future prospects. Whereas many received full-time care prior to PéVA, they now are responsible for their own finances, medical appointments, social life, transportation, and more. This has led to clients reporting a fundamental and positive change dubbed by sociologist Sylvain Kerbourc’h as “identity conversion”. How are you measuring/assessing whether the service/initiative is implementing some or all the key factors characterising the rightsbased framework? Do you have any evidence or studies to show the impact?While evaluation is a continual part of the modules clients take part in throughout PéVA, there was also an independent study on PéVA done in 2020 by Sociologist Sylvain Kerbourc’h of the Center for Study on Social Movements (EHSS). During this study, Kerbourc’h interviewed and surveyed PéVA clients about their experiences. The successes we cite emerge in part from this study. What are, in your experience, the “success factors” or support measures which allowed your organisation to realize users’ inclusion, independence, participation and access toservices?The approach to independent living in stages has been major success factor in the development of confidence among clients. The product of PéVA, in the end, emerges as not only the ability to live alone but also the belief in oneself that they can live alone and face the obstacles that come with that independence. These results have been closely tied to the emphasis on self-determination and empowerment throughout the process as demonstrated by the great deal of independence granted to clients from the beginning and the emphasis on self-evaluation. Another major success factor is the restructuring of vocabulary around PéVA as a training, something clients participate in, rather than something done to them or for them. This philosophy flows throughout the PéVA program.5What were, in your experience, the biggest hurdles or problems which made implementing rights-based approach to service creation, production and deliverydifficult to be developed or put in place?A recurring barrier to the participation, empowerment, and accountability of clients has been the reticence of their parents to relinquish control over their family members and accept that the results of Péva are possible. These well-meaning parents have to accept a transferring of control from themselves to their child which can require a major reimagining of the status quo for both the family and the client. This can impede both the entry of the individual into the Péva program, as well as the client’s progress as they come to realize their own power and accountability for success. It is a fundamental and, at-times, difficult change for the clients and their families alike. FUTURE DEVELOPMENTS AND TRANSFERABILITYHow do you see the initiative developing in the future?Since 2018, Péva has begun to be introduced in settings outside its original location in Chinon, France. The future for PéVA is hopefully an increase in its geographic scope by creating programs like that in Chinon across France and beyond. The program has had 25 years of successful development in Chinon, and the question is now how to successfully replicate that success to reach new communities. What are the major future challenges you see in relation to the initiative, for your users/clients, staff and organisation and for employers? How does your organisation try to overcome them?The current pressing question for Péva is how to expand the program so more may benefit while maintaining the high degree of professional expertise that has allowed the program to be successful. As it has been functioning for decades now, many of the professionals involved have remained the same and worked in the same capacity for a long while. The challenge will be imparting that expertise in a way that allows the results to be replicable. This will involve a great deal of documentation of the program, which has already been taken up, and training of future Péva locations, which has also begun in a few cities across France.Do you think the initiative could work in another country? If so, which aspect/s and why?Absolutely, PéVA could and hopefully will eventually be spread to other countries. It has already begun implementation around different settings in France. Due to its nature as a pedagogical tool, it is inherently transferrable. The 3 stage approach to independent living specifically could be a promising development in other regions looking towards alternatives to institutionalization. The selfassessment nature of the curriculum is also a promising tool that has produced great strides in the autonomy of PéVA participants, and it would wonderful to see that taken up in other countries. POLICYHow would you describe your organisation’s cooperation and dialogue with policy makersand/or public authorities as to adaptations you had to make?From its inception, PéVA has had successful relationships with local authorities such as the regional health department in large part because it is understood that PéVA, beyond vastly improving the quality of life of its clients, also is an economical choice. It is estimated that for every PéVA client, once installed in phase 3 of independent living, about 50,000 euros per year are saved in health care costs. This has been appealing to local authorities and was helpful both in garnering their initial support as well as maintaining it as the success of the program has grown. In 2019, for example, the center was visited by Sophie Cluzel, the French secretary of state for 6disability policy, which paved the way for the expansion of Péva to other regions in the past few years.Have there been changes in legislation or regulations that positively or negatively affected the realization of rights-based services? If so, could you briefly describe what changed and with what effect for your users/clients, staff, organisation and employers.There have not been specific legislative changes that have recently affected operations. What would need to change in funding, policy and regulatory frameworks to better support people with disabilities’ rights?Greater financial and political support for the right to independent living would allow Péva to expand both regionally and in its capacities. The Péva program curriculum and guidelines are welldeveloped, but in order for more people to benefit, more resources and funding would be required.