Willy Allègre: “Rehab-Lab enables users with disabilities to take control of their rehabilitation and life projects”

Publications Interviews

Willy Allègre: “Rehab-Lab enables users with disabilities to take control of their rehabilitation and life projects”

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Willy Allègre, impulsor del Rehab-Lab, en las instalaciones de CIM-UPC

Willy Allègre is an engineer and the driving force behind the Rehab-Lab european network, a community of over 50 Fab Labs that enable the 3D production of functional aids for people with motor disabilities. At iSocial, we interviewed him regarding the Rehab-Lab Cat project, which will extend the initiative to Catalonia.

How did the idea for Rehab-Lab come about?

Rehab-Lab started in 2016 at the Kerpap rehabilitation center in Brittany. The idea stemmed from a service offered there called the “technological assistance lab.” The team of engineers working there saw great potential in 3D printing to create personalized technical aids, so we decided to involve a few occupational therapists and patients, showing them what could be done. The results were well-received, and we launched a series of workshops where creativity was key. We realized that something occupational therapists were already doing—handcrafting technical aids—could be done through digital fabrication and 3D printing, which offered many advantages. We decided to create a Fab Lab space integrated within the care structure at our facilities to allow any patient in our center to create their own technical aids, of course with assistance.

What need does this initiative address?

It primarily addresses the needs of patients with motor disabilities who have difficulty grasping or performing precise movements with their hands, such as holding a fork, eating independently, picking up a glass, or operating the joystick on their electric wheelchair. It also meets the needs of occupational therapy professionals who can improve the process of creating custom technical aids when no existing products on the market meet the patient’s specific needs. Additionally, it responds to the needs of care or medical-social institutions by enabling patients to be, as much as possible, active participants in their rehabilitation and life projects. Rehab-Lab gives them the opportunity to take charge of their own technical support, creating objects tailored to the activities they will need to perform in their new situation.

What was the learning process like for incorporating 3D printing into your center and creating the Rehab-Lab network?

As I mentioned, the first Rehab-Lab was established at Kerpap in 2016, and we immediately started spreading the word about the project, which was quite innovative at the time. Many professionals contacted us, interested in implementing a similar model, and these requests allowed us to develop a training pathway. Today, in France, there is a university degree in 3D printing specifically for the healthcare or social care sectors, where we train various health professionals. It’s quite innovative, even across Europe, to have a degree focused on 3D printing applied to healthcare or disability. This is our specialty.

What do these training programs involve?

What’s particularly innovative about our approach is that we haven’t created a purely technical training program. While there is significant technical learning involved, such as how to create an object, break it down into different geometric shapes, and design it for 3D printing, we also focus on pedagogy related to organization. Our experience has shown that projects fail when a center’s management buys a 3D printer and simply tells the occupational therapist to use it for creating functional aids. That doesn’t work because you have to think about organization, patient flow, and the roles each person will play. We quickly realized this and integrated this aspect into our training, teaching people how to understand and define the project.

There’s a clear intent in your project to share the knowledge gained.

Yes, another important lesson we’ve learned is how to harness the benefits of 3D printing by sharing not only the technical aids we’ve created but also by accessing aids made by others. This saves time and offers new ideas for creating aids for our own patients. That’s the big advantage of the digital revolution behind all this. Before, occupational therapists would create functional adaptations using thermoformed plastic, which had to be heated to shape it. The adaptations were unique, and to make another one, you had to repeat the whole process. Now, thanks to digital technology, a technical aid model can be shared and recreated to meet the needs of other professionals. We can consult a database to see what already exists before creating a new aid for someone.

What are the advantages of 3D printing compared to previous materials like plastic or wood?

First, from a technical standpoint, as I mentioned, digital manufacturing offers advantages over traditional manufacturing methods. The benefits are in the adaptability and ease of use. If I want to create an object, I can take an existing 3D model and easily adjust its dimensions. This way, we don’t start from scratch, but from a pre-existing model. Another benefit is the ability to reproduce the object. When a technical aid is created, the patient receives both the object and the digital file. If the object breaks, they still have the file and can request an exact copy from a local Fab Lab or 3D printing service without needing to reconnect with the organization that initially made the object. Other advantages include reduced costs, faster production, and the ability to adjust the weight of the aid. Additionally, there’s a broader benefit beyond the technical aspects—making object creation accessible to people who may not have the physical ability to manipulate materials like wood or plastic to create custom adaptations.

Then there’s also the personalization…

Exactly. The ability to choose the color, material, and design is significant for helping individuals feel more connected to their technical aids, which in turn empowers them in the face of their disability. In the case of children, for example, customized designs can help diminish the visibility of the disability and make the aid more appealing. From a social standpoint, this encourages users to get involved in the design of their own technical aids.

Can you give us an example?

At the Rehab Lab in Kerpap, the first person to create a technical aid was named Jean-Christophe. Among other things, Jean-Christophe is a DJ and a quadriplegic. For his DJ activities, he uses a stem that he holds in his mouth to press the buttons on his mixing table, and he can also control a computer with head movements. Jean-Christophe wanted to replace the standard buttons on the mixing table with 3D-printed ones that had a hole where he could better fit the mouthpiece, allowing him to control them more easily. He even chose glow-in-the-dark material so he could see them at night.

I often share this example because, although it’s a rather unique case—not many quadriplegic patients are DJs—it demonstrates the high level of user participation that we strive for.

This collaborative process is central to the Rehab-Lab project.

Yes. For me, Rehab-Lab is less of a technical project and more of a project about rethinking the user’s role. The key aspect is that the person, whether they’re a patient, resident, etc., is involved at the highest level, even in the co-design process. The result is tangible: a physical object born from an idea, from the exchange of ideas among different stakeholders, and everyone quickly understands what the object is for.

How does the co-creation process of functional aids work between patients, occupational therapists, and technicians?

In the Rehab-Lab model, this tripartite approach is essential. On one side, there’s the patient, who is the project leader in creating their technical aid since they’re the expert on their disability. But the patient needs support from others with a broader view. The second person is the occupational therapist or healthcare professional, who can contribute their clinical experience and expertise. The therapist is mainly involved in expressing the needs, identifying whether a custom technical aid is required based on what’s already available on the market, and then evaluating the object after it’s created to see if any modifications are needed. Thirdly, there’s the technical specialist who supports the user with 3D printing, from conception to manufacturing and maintenance. If there are technical issues (which are common), the technician must resolve them and teach patients how to use 3D printing software.

Do all Rehab-Labs need to have an engineer in this role of technical advisor?

No, most Rehab-Labs haven’t had the opportunity, due to funding reasons or otherwise, to hire an engineer. But there are many other ways to have these technical advisors. They can be occupational therapists who have been trained in 3D printing and take on this role to support other occupational therapists. They could also be engineering or university students doing internships, or occupational therapy students who are increasingly interested in this area. In some cases, former patients who have created their own assistive devices and have been trained can also help other patients.

I imagine that for occupational therapists, this co-creation process is also interesting.

Yes, and maybe it’s worth mentioning an additional advantage of 3D printing, which is that the Rehab-Lab space is a mediation space; that is, beyond creating a functional assistive device, it’s a space where occupational therapists can work, first observing, before doing anything, what the patient needs when using a computer—whether they use a joystick, what hand movements they make, whether they need help pressing keys, and so on. These are all useful observations. They can also work on cognitive functions through spatial orientation on the computer, memory aspects… In short, there’s a lot at play in this space beyond just creating a functional assistive device for the user.

What led you to create the Rehab-Lab community, and how has it evolved over time?

Over time, we aimed to spread the initiative and support professionals who wanted to implement assistive device creation through 3D printing. From the start, we saw the value in sharing content and assistive devices as freely as possible. This is why the initiative expanded, first regionally, then nationally, and now at the European level through two international projects. Today, there are nearly 50 Rehab-Labs, mainly in France but also in other countries.

The goal of creating the Rehab-Lab community is to allow people to find solutions to their needs when there are no products available on the market. The community helps maximize our impact. Currently, we’ve taken on the role of animating this community: sharing experiences, asking beneficiaries for feedback, etc. We also offer services, mainly training and support for organizations to implement these types of activities. It’s a task that requires time and faces funding challenges.

Is funding a challenge?

Yes, clearly, there are significant challenges related to the business model, especially around community animation. That’s why, in 2024, we had to introduce a paid membership option for the network. Our philosophy is to maintain free membership, but now we also have this second level of membership that helps contribute financially to the project’s sustainability. This is important to continue the work we’re doing, and I think most Rehab-Lab members in France understand the value of contributing to ensure the initiative lasts. But extending this model to the broader European network will be a challenge.

What other challenges are you facing now?

Another challenge involves the regulations around medical devices, which is a European regulation affecting most personalized assistive devices for various disabilities. It applies across all European countries, so the good news is we all face the same restrictions. This regulation means that an assistive device that takes two hours to create might take two days or more to get to the patient because you need to fill out technical documentation explaining the printing parameters, quality management, etc. It’s not just a matter of time but also of workload. This is a challenge we need to address.

The good news is that digital fabrication allows us to trace our personalized assistive device creation more easily. We know the object, we can reproduce it, we know the materials used, we have the references… The 3D printer is also always the same. Before, with manually created assistive devices by occupational therapists, everything was more complicated. That’s a positive aspect, and what we’re doing now is applying best practices to streamline the process. But in any case, this will be a challenge for the next four or five years: demonstrating our good faith and rigorous compliance with European regulations, though adapted to the context of personalized assistive devices.

At the same time, as we expand the Rehab-Lab network, we have more strength to demonstrate what it means for a social or healthcare organization to create a “personalized assistive device.” We are more than 100 strong, making it easier to show the kind of activity we’re involved in. Asking us to produce such a large volume of documentation, with the same requirements as companies, is not viable.

Rehab-Lab is currently expanding to new countries. How is that process going?

When we considered how to spread our practices internationally, we realized that the role of the leader is key. The leader is responsible for spreading the concept in their country. We believe this is the best model because it allows for better cultural and linguistic adaptation, etc., and it’s also useful and interesting to share the network’s animation work. The Rehab-Lab Cat project is a great example. We’re doing this in Belgium as well, and there are organizations in other countries that are asking to take on this role to try and start spreading the Rehab-Lab project in their contexts.

What would you highlight about the process of implementing Rehab-Lab in Catalonia?

First of all, I’d like to take the opportunity to thank iSocial for the work they’re doing, which I’ve seen firsthand. At iSocial, you identified my initiative, had me participate in a webinar, and then decided to present the project to a call for proposals together with other organizations [Ampans, Guttmann, CIM-UPC, and Avinent], including us as partners. I really value this approach: recognizing an initiative that already exists and is well-developed, using it as a reference when creating your own project, while considering cultural and linguistic aspects, but connecting with what’s already out there so you’re not starting from scratch. I think this is a win-win strategy: the local network in Catalonia enriches the existing network, and at the same time, it will be strengthened. Plus, Rehab-Lab in Catalonia will be very useful in showing how things can be set up in a short period of time. So, I wanted to thank you for this opportunity, congratulate the project proposal behind it, and say that Rehab-Lab Cat has all the ingredients for success. And, of course, those who will benefit the most are the people who will be able to access the local Rehab-Lab and get effective services tailored to their needs

Entrevistes

Willy Allègre, impulsor del Rehab-Lab, en las instalaciones de CIM-UPC

Willy Allègre: “Rehab-Lab enables users with disabilities to take control of their rehabilitation and life projects”

Willy Allègre is an engineer and the driving force behind the Rehab-Lab network, a community of over 50 Fab Labs that enable the 3D production of functional aids for people with motor disabilities. At iSocial, we interviewed him regarding the Rehab-Lab Cat project, which will extend the initiative to Catalonia.
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Interview with iSocial: Dr Simon Duffy, Citizen Network

Simon Duffy explains the benefits of Self-directed Support and the barriers to this methodology. (iSocial Foundation, 2022 May)

Victoria Mandefield: “Soliguide allows professionals to save time for social work and support”

Publications Interviews

Victoria Mandefield: “Soliguide allows professionals to save time for social work and support”

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Victoria Mandefield, creadora de la Soliguía, en la sede de la Fundación iSocial

We speak with Victoria Mandefield, CEO of Solinum and creator of Soliguide, a digital search engine for resources or social organizations aimed to people in vulnerable situations. Thanks to the Solidigital project, Soliguide arrives in Catalonia and will integrate with Nidus and the French application Reconnect.

How did the idea of Soliguide come about?

The idea originated in France, stemming from my experience as a volunteer, where I often found myself providing inaccurate information. The social sector undergoes frequent changes, with high turnover among social workers, volunteers, and organizations opening and closing. This dynamic environment can make it challenging to navigate. Moreover, there are numerous stakeholders involved, including associations and public services, making the landscape somewhat chaotic. I needed access to updated, precise, and comprehensive information, which led me to create Soliguide. Initially, it was a small and limited project, but over time, it has evolved into something more professional.

And now Soliguide is reaching Catalonia. How do you view this expansion beyond the border?

I believe the main advantage of this expansion into Catalonia, compared to our experience in France, is the significant time savings. Currently, when we expand into new territories in France, the process is rapid; we know exactly what we’re doing, understand the methodologies, follow well-defined steps, and get the job done. Whereas initially, we were somewhat unsure of what we were doing, leading to a bit of chaos. Consequently, it took us a long time to see the social impact of Soliguide, to spread its reach, and to gather quality data. Now, it’s different. And that’s what I aim to bring to Catalonia and Spain: the ability to move faster to achieve a greater social impact. Of course, this will involve adapting to local realities because there will be things we don’t know and will discover, while other aspects will require modification, which will be an interesting exercise.

What challenges do you foresee Soliguide encountering in its deployment in Catalonia?

I think the beauty of it all lies in being surprised by certain things. Institutional relations are probably not the same in France and Spain. Culturally, they are two quite different countries. There won’t be the same realities. The type of migration present in Catalonia and France is different, even though there may be some similarities. And this is the great interest of a cross-border project: there will be bilateral exchanges that will allow us to better assist people.

You have a fundamentally technological background. How do you think technology can contribute to improving people’s living conditions and reducing inequality?

Precisely because I’m an engineer, people often expect me to have a very pro-technology stance, to say that it will solve all the world’s needs, when in fact I don’t believe that at all. Technology can be relevant in various aspects. Especially in terms of efficiency. In 2023, there were 3.7 million searches made in Soliguia. Those are significant numbers. When I compare it to when I was a volunteer, I think back then I would provide information one by one, and I could give an average of ten pieces of information over a few hours. In this case, technology allows us to have a much larger scale impact and make certain things more efficient that are not always rewarding. For social workers, for example, desperately searching for information, asking colleagues, making calls who knows where, searching through old files… these are not activities that have a great added value. And suddenly, if they can save this time, it’s time they gain for social work. This is one of the great impacts of Soliguide: it allows professionals to focus on human relationships, on social support, something that digital tools can never replace.

How do you measure the social impact of Soliguide?

The topic of social impact assessment is very important to me. We have already produced 3 reports in this regard. It’s relevant because obviously there are always anecdotes, and we see people whom Soliguide has helped access care, find assistance, etc. But that’s not enough. There needs to be a rigorous impact assessment that goes beyond anecdotes, meaning it should be quantitative. And then we see that the biggest impacts are the time saved for social workers and volunteers, better coordination among actors in the same territory, providing guidance with better quality data. There’s also a better relationship of trust between actors in the social sector and their beneficiaries. Previously, beneficiaries would ask for information and the people working in the sector would provide whatever they could, which wasn’t always the right information. Now, with Soliguide, they provide updated information, which builds more trust. We also know that Soliguide is very economically efficient for a territory. For every euro invested, there’s a return of €1.93 in savings because all that lost time, all that lost energy costs money.

How is the quality of the data collected in Soliguide reviewed?

This is the key aspect, and it’s not always given the attention it deserves. Often people think, “I’ll create a fantastic mapping, the application will have these features, those functionalities, and everything will go smoothly.” And they overlook the heart of the project: the data. It’s very, very difficult to have quality data. What we do is evaluate the currency of data for a territory to ensure it’s up to date. And we are very precise in this aspect. For example, if an organization closes during the summer, that will be reflected. We don’t just list the hours, but also which days they close, etc., because that’s important for people. And we also ensure that the information is complete. It’s good to know that there’s a food distribution point in a certain place, but if you don’t know exactly which public it’s aimed at, what documentation is required, if it’s saturated or not, or if you don’t have contact information, it’s not so useful.

It’s a work of detail…

We make a concerted effort to comprehensively cover each territory. If we were to include only two or three entities or structures from each territory in Soliguide, it wouldn’t be relevant. It’s important to collect as many as possible, and if possible, all the organizations that exist in a particular territory in order to better guide people.

And achieving this requires the human touch. There’s no substitute for it with technology. While we do run summer and winter update campaigns and strive to automate processes, ensuring the accuracy of information always involves making calls and confirming details. It’s a significant undertaking. Additionally, there’s a misconception that digital tools can operate independently, but that’s not the case; they require human oversight. This is why Soliguide always seeks partners to carry out the work on the ground.

One of the key strengths of the Solidigital project is cross-border collaboration. What advantages do you think this collaboration format brings?

There’s a fundamental reason why this cross-border collaboration is interesting, and it’s because these borders are highly permeable. Administratively, a border exists, but in reality, one can move from one side to the other, and many issues are shared across these boundaries. Cross-border cooperation allows us to collectively address the common problems we face, as well as exchange best practices, avoiding redundant efforts. What I find particularly compelling about this project is the concept of interconnection. In the social sector, we’ve lagged behind in adopting and developing technology and digital tools compared to the private sector. We are way behind compared to the private sector. However, for the last few years, the private sector has been heavily focused on the interconnection of tools. The era of creating monolithic, standalone tools is over. Developers now work to create tools that interconnect with other tools, which in turn connect with others, and so on. This approach has proven to be the most effective. And suddenly, it turns out that we’re not as far behind in the social sector: we simply need to prioritize interconnecting existing tools rather than seeking a singular and magical solution to all problems. This aspect underscores the significance of the Solidigital project: it represents a significant stride forward in the social sector, advancing the democratization of technology and the integration of technological tools.

An example of this interconnection, within the framework of the Solidigital project, is the integration of Soliguide with the Nidus tools in Catalonia and Reconnect in France. What benefits do you think this integration will bring?

I believe that what Soliguide will bring to Nidus and Reconnect is more added value for users. We’ve tested this in France on several occasions, such as with the app Entourage, and I think it will be the same with Nidus and Reconnect: for users, it will be fantastic to have a map from the Soliguide database, as they won’t have to search for the information they need in another application. And in our case, integration has an immense advantage, which is to increase our social impact. For example, we don’t have a communication strategy for the general public; we don’t address all citizens, but thanks to the interconnections we’ve been making, we reach users we never thought we’d reach.

How can the continuity of this project be ensured in the long term?

To ensure its long-term continuity, two key aspects come into play. Firstly, there’s the imperative of doing a good job: if you have a significant social impact, you become necessary. If you can objectively prove that your social impact evaluation indicators are excellent, things continue. This has been our experience across various regions. Secondly, there is the appropriation by institutional actors. Co-construction has many virtues. One of them is the ability to make better decisions, tailored to local realities. However, it also has the benefit of allowing people to take ownership of the project. And if they feel that the project is theirs, they are less likely to abandon it, and politicians and entities are more likely to invest in it, either with money or with human resources.

Do you think the social sector has changed in recent years?

It has changed, undoubtedly; in some ways for the better, in others for the worse, but I think we have participated, in any case, in a certain positive digitalization of the sector. I say “positive digitalization” because there has been another less positive one in the sense that, for example, now beneficiaries of social services are forced to do all the procedures online, without assistance, and that’s complicated. But technology can also be useful, and that’s what we’re working on.

Another contribution that has been made, and of which we have been part, is a certain form of collaboration. At the beginning, for example, when we talked about the involvement of the beneficiaries in social action, we felt a bit alone. It seems very obvious that in a social project, the opinions of those involved should be sought, but the truth is that a few years ago it was not a majority position. People were accompanied in their daily lives, yes, but there was the idea that their real needs were already known, which is not true. And I think that has changed, that it has been understood that the participation of those people involved must be included.

What role should politics play regarding poverty and social exclusion? Do you think technological innovation can help address these issues on the agenda?

What technology can bring, and what we try to bring in any case, is reliable data. We have more and more data and analyze them more. We can tell politicians: “Look, we have data confirming that there are so many food banks in this area, and that many of these banks are saturated; and according to the data, in this other area there are no resources. These are the data, do what you think is appropriate.” I still think there is a lack of reliable data on which to make reasoned decisions. Otherwise, it’s easy to fall into abstract political protest, which I experienced as a volunteer and which is very tiring and doesn’t contribute much. If we can change perspective, we can say: “Okay, here’s a problem, and it’s objective. We’re not saying it, the data are.” And from there we can work together to solve it. And I think that’s the role politicians of the future can have: working on problems from the root, beyond the ambitions of each organization. Identifying the problem and seeing what could be done to solve it before it arises.

Entrevistes

Willy Allègre, impulsor del Rehab-Lab, en las instalaciones de CIM-UPC

Willy Allègre: “Rehab-Lab enables users with disabilities to take control of their rehabilitation and life projects”

Willy Allègre is an engineer and the driving force behind the Rehab-Lab network, a community of over 50 Fab Labs that enable the 3D production of functional aids for people with motor disabilities. At iSocial, we interviewed him regarding the Rehab-Lab Cat project, which will extend the initiative to Catalonia.
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Interview with iSocial: Dr Simon Duffy, Citizen Network

Simon Duffy explains the benefits of Self-directed Support and the barriers to this methodology. (iSocial Foundation, 2022 May)

Interview with iSocial: Dr Simon Duffy, Citizen Network

Publications Interviews

Interview with iSocial: Dr Simon Duffy, Citizen Network

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We speak with Simon Duffy, president of Citizen Network. Duffy explains the benefits of Self-directed Support, what barriers this methodology encounters and how he understands the role of social work in improving the quality of life of all citizens.

What sparked your interest in social work?

I stumbled into social work. I am not a trained social worker; by training I am a philosopher. My first proper job was as a management trainee in the NHS (the UK’s healthcare system) and I visited an institution where people with intellectual disabilities were incarcerated. I was both shocked by the environment people were living in, but also excited to discover the amazing people who were trapped there. I felt called to change my career and I started working to support people with disabilities to live in the community.

Today I feel that I am a social worker, but perhaps a part-time unofficial social worker.

Why do you promote the self-directed support methodology?

As I started to work with people in the community I found that the new community services which replaced the institutions did not always support people to be full citizens. So I started to explore different ways to help people take their place in the community, to have a real home of their own and support people to get work, contribute to the community, find love and do all the things that make life worth living.

There are a lot of different things we can do to help people live good and meaningful lives, but I started to focus on the money and power. It seems to me that people do not have enough power. People may be given services, but they cannot really shape support around their own lives and hopes for the future. In a way – even when institutional buildings close – the institutional system remains.

So over more than 30 years I have worked to create new systems of funding, control and support. When we put these different things together we can create a good system of self-directed support. But the true purpose of this work is to advance citizenship for everyone.

Is it a methodology applicable to any situation of social vulnerability?

Yes and no.

Sometimes people have a view of self-directed support that is too simple; they think that self-directed support is only for people who can easily make decisions for themselves. But self-directed support can work for everyone, if we respect the principles of supported decision-making.

In some ways self-directed support works best for people with the most complex disabilities or needs. When there is conflict, anger or challenge it often means that we are not supporting people in the right way. We need to listen more carefully and adapt our response to help people get what they need. This means examining and amending every variable. Maybe the person is not getting enough control or maybe the person who supports them is the wrong person or maybe we are taking the wrong approach.

Self-directed support is a framework for creating personalised support – allowing us to change anything and everything to fit the person’s needs.

So self-directed support should work for everyone. But that doesn’t mean we should use it to solve every problem. Some services may be best organised as a public service, for example emergency medical care or public transport. These are things that are properly managed by different principles, because we need to think about the needs of the whole population. The same is true for the basic social work system itself. The social work system is infrastructure, a framework upon which self-directed support should operate.

If a person is interested in Self-Directed Support in UK, what steps can he take towards it?

In theory, in England and Scotland (and in a number of other countries, like Australia) self-directed support is meant to be core operating system for every adult who needs social support. The idea is that after your needs have been assessed you will be given a budget and options to control that budget and to shape your own support.

That’s the theory. The reality is messier and more limited than this. For example, in England residential care services have been allowed to opt out of this system (personally I think this is a mistake) and also the system does other things to discourage people from taking an active role in managing their own personal budget.

This is the international pattern. Self-directed support is growing and being used by more groups. However systems and services often resist this growth and try to reduce their accountability to the person.

What must social workers do to walk a person through Self-Directed Support?

Good social work enhances people’s citizenship by supporting people to live meaningful lives as a full and equal member of the community. Our goal must be to help everyone to contribute, so that their unique gifts can be appreciated. If systems of self-directed support undermine our ability to do good social work then there must be something wrong with the system.

There are many different things that we can do to help people get the right support.

Sometimes people really benefit from understanding their personal budget, especially if this opens up new a creative ways to meet the person’s goals. So social workers will benefit from any system that makes its easier to make budgets transparent so you can talk to the person and their network and explore the best way to use that budget.

It is also important to use the development of good support to help the person build a community of allies around them to support them with decision-making, planning, management or community-building.

What we must not do is treat self-directed support like shopping.

We do not build a life of meaning by just picking a service provider. A good service provider will be a partner and an ally to the person and will want to become an active agent in helping the person to achieve their goals.

What are the tools currently available to implement this model?

This is a difficult question. There are lots of tools that emerge around specific systems: tools for setting budgets, person-centred planning tools, supported decision-making agreements, systems for finding support providers, recruiting personal assistants, managing your budget. I am not sure what to recommend and sometimes I think we can get a little distracted by the tools and forget to use our common sense.

The best tool is the human heart. Everything must be judged by that.

Are there barriers that may prevent citizens from benefiting from Self-Directed Support?

The main barrier will be the natural desire of any system to protect itself from change. Again it is important to see that the move towards the use of self-directed support is only part of the wider move away from institutions and towards human rights and citizenship. It is natural that many people, organisations and systems will be challenged by the idea that the person should have more power and that practices in the past should change and evolve.

Although it is possible to feel angry or disappointed that a system is slow to change the real challenge is to find ways to help people see what can be positive about the change. The development of real self-directed support is an organic and evolving process and we need to develop strategies to invite more and more people into the journey: not just people who need help but also families, support providers, administrators and community actors.

The change process becomes stronger if we can help build a richer community of allies around the change.

Can you mention a case of success?

There is success for people and success for systems. Here are a few examples.

We used self-directed support to help Patrick leave a large institution and to build a life in his own home in the community. We used creativity to help him buy a house that was suitable and to organise a personalised support team. Before he moved into his home Patrick was see as a very dangerous person. But since moving into his home in 1997 he has lived a positive and productive life in his community. Without this personalised support he would have been trapped in an expensive and risky institutional environment.

Wendy has intellectual disabilities, and she wanted a personal budget so that she could live life in her own way. She has been very creative with her budget, for example, instead of using a physiotherapist, she pays for a personal trainer at a gym. Her solution is more positive and motivating for her. She is also an active coach, showing other people with learning difficulties the benefits of having more control over your life.

For systems success comes in waves. The first developments in self-directed support started in California in 1965, and since then the USA has seen periods of growth and then periods of resistance. Australia is also an interesting example, for radical changes were introduced after a campaign called Every Australian Counts. This campaign brings together people, families and services providers in a shared movement and it treats the right to self-directed support as a universal right that everyone should expect. Now, when the Australian government tries to water down this reform, the campaign is very effective at putting pressure on the government. This is a very encouraging development because it starts to normalise self-directed support within wider society.

Self-directed support shouldn’t really feel like a new and strange methodology. It is simply a matter of treating everyone as we would each wish to be treated – as a full and equal citizen, worthy of respect. It should give social workers greater power to do their job properly and in harmony with true ethics and values of social work.

Entrevistes

Willy Allègre, impulsor del Rehab-Lab, en las instalaciones de CIM-UPC

Willy Allègre: “Rehab-Lab enables users with disabilities to take control of their rehabilitation and life projects”

Willy Allègre is an engineer and the driving force behind the Rehab-Lab network, a community of over 50 Fab Labs that enable the 3D production of functional aids for people with motor disabilities. At iSocial, we interviewed him regarding the Rehab-Lab Cat project, which will extend the initiative to Catalonia.
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Interview with iSocial: Dr Simon Duffy, Citizen Network

Simon Duffy explains the benefits of Self-directed Support and the barriers to this methodology. (iSocial Foundation, 2022 May)