Presentation at EASPD Hearing on Co-production
Door: Jolijn Santegoeds
Blijf op de hoogte en volg Jolijn
02 Juni 2015 | België, Brussel
On Tuesday 2 June 2015, I participated in a Hearing at the European Parliament in Brussels. The Hearing on “co-production” was organized by the European Association of Service providers for Persons with Disabilities (EASPD, http://www.easpd.eu/en/content/lights-camera-action-co-production-process-shaping-all-together-more-inclusive-society ). I was invited to give a presentation on co-production on behalf of the European Network of (Ex) Users and Survivors of Psychiatry (ENUSP, http:///enusp.org)
It started at 9.00 AM. I was theoretically on time, but I encountered some administrative problems at the entrance. At the accreditation desk they couldn’t find my registration. While still on the search, I met Peter Lambreghts from ENIL, who was more experienced in the entrance-procedure, and he pointed me to the person who had my entrance-badge. Together we went to the Hearing room, which is hard to find in the maze of EP hallways. The Hearing hadn’t started yet when we arrived.
The Hearing was opened by Mr. Luk Zelderloo, EASPD Secretary General, who briefly presented the programme, and explained that EASPD is now developing a concept of “co-production” to identify, develop and promote services which promote inclusion and implement the principles of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in Europe. The key areas of EASPD are currently on CRPD article 19 (living independently and being included in the community), article 24 (education) and article 27 (work and employment). The main questions are: What needs to be done, and how? The concept of “co-production” should give an answer on how to reinforce users involvement in all aspects of service provision.
Mr. Richard Howitt, Member of the European Parliament gave a welcoming speech, and spoke about the need to redesign services, in the light of the UN CRPD and the budget cuts that currently affect the services for persons with disabilities. It is important to keep on pushing for advancement, to avoid going backwards. The principles of inclusion have to be translated into practice, with the aim to maximize choice, autonomy, independent living, and good practices such as personal budgets. Now, often persons with disabilities have no control over service provision, and the co-production process is an attempt to change this. The concept of co-production still needs development and input from all stakeholders, and the goal of the Hearing is to gather input for the concept of co-production.
The first presenter was Mr. Franz Wolfmayr, EASPD president. He spoke about the need to develop a concept of high quality services that are in line with the UN CRPD. In the past 50 years, the concept of services has been based on big institutions and the legal frameworks have followed in this direction. In the past 20 years there has been some change, and several community based and mobile services have been developed, but these are not widespread yet. In the old regulations the quality of services is defined by “input criteria”, such as the amount of square metres in an institution, but in reality this doesn’t represent the quality of services. A system of “outcome measurement” would be more appropriate, and to link this with funding (Procurement Directives). Evaluation of services and measures is needed, to identify and promote good practices to member states.
The next speaker was Mrs. Analise Cotone on behalf of Maria Luisa Cabral, Head of the Disability Unit of the European Commission. She first explained the importance of the currently ongoing review process on the implementation of the Convention on the Rights of Persons with Disabilities in the EU by the UN CRPD Committee, which provides a momentum for evaluation and change. She stressed the commitment of the European Commission to this process, which is seen not only as a priority, but as an obligation (also see the Statement of Commissioner Thyssen, http://www.edf-feph.org/Page_Generale.asp?DocID=13854&thebloc=34280). Also this year, the first period of implementing the European Disability Strategy 2010-2020 is evaluated, and the CRPD review process will provide a useful reflection for the future.
The partnership and involvement of DPOs is getting more attention at the European level. The EU frameworks that regulate the European Structural Funds for the next 7 years contain “ex ante conditions” (which relate to the expected benefits of the use of funds) and also contain provisions for partnership, including a code of conduct for monitoring prescribing to include all stakeholders, with special attention to engage groups that are affected but find it hard to influence these processes, explicitly including persons with disabilities.
And there is a European “Rights Equality Citizens Programme” (REC, http://ec.europa.eu/justice/grants1/programmes-2014-2020/rec/index_en.htm) which includes options for funding activities that are advancing awareness and the implementation of the UN CRPD, and is also accessible for NGOs and DPOs.
Next was Dr. Gauthier de Beco, lecturer in Disability Law at the University of Leeds, who made a theoretical analysis of the term co-production in relation to support and services for persons with disabilities: “to produce support and services … in partnership with persons with disabilities”. He mentioned that the definition of support was not given by the UN CRPD, and is quite hard to define a framework for service design and delivery, without having a definition of support. In relation to partnership, guiding principles can be derived from CRPD article 33 on national implementation and monitoring, and the Paris Principles, which can be applied to the entire process of co-production.
The last speaker of the first panel was Mr. Alain Faure, EDF’s Executive Committee expert on access to services (European Disability Forum). He was concerned that co-production would lead developments back in time, controlled by institutions, and he emphasized that persons with disabilities should define the services. Instead of the concept of co-production, he suggested a structural dialogue. Seeing the reactions of several EDF member organizations in the Hearing, this position of EDF was not representative for the position of all member organizations of EDF.
After the coffee break, the second panel took place , where 9 speakers briefly presented their views or an example of co-production. I was speaker nr. 8. We were all asked to keep our reflections on co-production as short as possible, since we were running out of time.
First was Mr. James Crowe, EASPD vice president, who gave an example from Wales: the Powys Supporting People Team, who have implemented a mind-shift towards the demands of users, not postponing demands, but actively taking care of these, which results in more person centered support and happier staff who feel useful instead of only maintaining rules.
Mr. Brando Benifei, Member of the European Parliament (S&D, IT) spoke about the need to find specific and targeted solutions to remove barriers for inclusion of persons with disabilities, especially in the light of the budget cuts which didn’t improve the services. The question where to put the money for implementation of the UN CRPD is a very relevant one. Co-production may provide some opportunities for stakeholders to reach a critical mass in securing the rights of persons with disabilities.
Mr. Peter Lambreghts, Board member of the European network on Independent Living (ENIL) illustrated his view by explaining that all citizens can meet services that are not really good, and that this is disempowering. Persons with disabilities depend a lot on services and often have many of these experiences, which can be very defining for the quality of life. Co-production would mean that the services are answering to the real needs, and are based on an inclusive working practice, with equal partnership and collaboration and passion. He stressed that the budget cuts are terrible, and have taken us back in time, not towards progress.
Mrs. Maria Nyman, director of Mental Health Europe (MHE) explained that co-production is linked to empowerment. Many persons with psychosocial disabilities, users and ex-users of psychiatry, feel powerless, alienated, having no control, no choice, no dignity and a loss of rights. The co-production approach of MIND, a UK based organization, shows many benefits, such as less stigma and fear, more trust (which is so badly needed in mental health care) and new resources because the user skills are supplementary to the professional skills, making care more diverse and better. The issue of forced treatment may seem off-topic, but it isn’t. Legal capacity is a basic right and is necessary for co-production. Free and informed consent is the basis for all co-production and for all services and support.
Mrs. Senada Halilcevic, Chair of the European Platform of Self-Advocates (EPSA) and Vice-president of Inclusion Europe, spoke about the challenges in the de-institutionalization process in Croatia, where persons with intellectual disabilities are moved from big institutions to homes in the community, but often still having no control over their own lives and facing the same attitudes (such as getting no choice in where to live and with who, no money, no key of the door etcetera). Article 19 on living independently and being included in the community means more than just being put “in the community”. It also means access to all rights and services in the community equal to other people, including schools, banks, museums, hospitals and so on. This needs to be realized. Freedom depends on support, and it is needed to find solutions together.
Then Mr. Mark Wheatley, Executive Director of the European Union of the Deaf (EUD) explained co-production from a sign language perspective. There is a lack of sign language interpreters in Europe (1 on 73 persons), and also the payment is often problematic, which is an elementary barrier for inclusion and therefor also for co-production. Also at EU level sign language interpretation is often forgotten, which is not a proper way of running a business. It would be a good idea for the EU to have its own sign language interpreter to make the EU processes more accessible. EUD advocates for a regulation on sign language, which legislates the right to sign language interpretation in each member state.
Then Mrs. Aurelie Barranger, Director of Autism Europe, explained that involvement of persons with disabilities should be meaningful, not limited. She mentioned a good practice of involvement and coproduction by the consultation platform “Ask Autism” in relation to the Autism Act in 2009, and the Autism Strategy in 2010 in England.
Then it was my turn to reflect on co-production on behalf of the European Network of (Ex) Users and Survivors of Psychiatry (ENUSP). I presented my own project: using Family Group Conferencing to avoid forced psychiatric interventions, which is a practical example of supported decision making, and a way of shifting power to the ‘object’. The approach of Family Group Conferencing is an example of co-production in the community in practice.
(For more information you can see my previous but similar presentation at the Conference of State Parties in New York in 2013: http://punkertje.waarbenjij.nu/reisverslag/4567654/presentation-text-on-eindhoven-model-cosp )
Then Mrs. Bernadette Grosyeux, EASPD Executive Committee member and Treasurer, gave an example of a changed approach towards children in Centre de la Gabrielle, where the number of institutionalized children is being reduced as a result of these efforts. Much attention is now given to providing clarity in communication, and to support the children to express their selves by various means, and to answer the questions in an easy-to-understand way. Services are now more tailored to needs and desires.
There was only little time left for discussion. An interesting question was raised on how service-providing NGOs relate to EASPDs work, but there was no clear answer to that question yet. It seems that the traditional split-up between service-providers and NGOs is changing, which may be a good sign of progress.
The closing words came from Mr. Luk Zelderloo, EASPD Secretary General, who briefly reflected on the Hearing as very interesting and very rich of ideas. He summarized that EASPD picks up that there is a need to clearly define co-production (no tokenism, but producing together). Several good practices of coproduction between service providers and persons with disabilities exist. Co-production can be seen as a shift in power, which results in better outcomes for users, better quality of jobs for staff, efficiency, innovation and a broader holistic approach. And last but not least, a legal basis for co-production can be found in the UN CRPD, which can be translated into European legal frameworks, policies and practices.
After the Hearing, several people said that they found my presentation inspiring, which of course made me feel good.
It was my first time at an event of the European Association of Service providers for Persons with Disabilities (EASPD), and I didn’t know the organization. I was a bit sceptical on the forehand, because I have been confronted with terrible views of service providers at several occasions, but I tried to have an open mind. Today, I had a quite positive experience, but of course this discussion wasn’t focussed on mental health laws, but on a rather non-controversial topic such as co-production – so I still have some reserves in terms of trust. That is my reality. Just like Maria Nyman of MHE said, trust is needed before co-production can really exist. It was an interesting event.
Afterwards I visited some friends in Brussels, had a really good time, and then I spent my evening in the trains back to Eindhoven, totally exhausted after 5 intensive days of international events. I had a great time in Warsaw and Brussels :)
It started at 9.00 AM. I was theoretically on time, but I encountered some administrative problems at the entrance. At the accreditation desk they couldn’t find my registration. While still on the search, I met Peter Lambreghts from ENIL, who was more experienced in the entrance-procedure, and he pointed me to the person who had my entrance-badge. Together we went to the Hearing room, which is hard to find in the maze of EP hallways. The Hearing hadn’t started yet when we arrived.
The Hearing was opened by Mr. Luk Zelderloo, EASPD Secretary General, who briefly presented the programme, and explained that EASPD is now developing a concept of “co-production” to identify, develop and promote services which promote inclusion and implement the principles of the United Nations Convention on the Rights of Persons with Disabilities (CRPD) in Europe. The key areas of EASPD are currently on CRPD article 19 (living independently and being included in the community), article 24 (education) and article 27 (work and employment). The main questions are: What needs to be done, and how? The concept of “co-production” should give an answer on how to reinforce users involvement in all aspects of service provision.
Mr. Richard Howitt, Member of the European Parliament gave a welcoming speech, and spoke about the need to redesign services, in the light of the UN CRPD and the budget cuts that currently affect the services for persons with disabilities. It is important to keep on pushing for advancement, to avoid going backwards. The principles of inclusion have to be translated into practice, with the aim to maximize choice, autonomy, independent living, and good practices such as personal budgets. Now, often persons with disabilities have no control over service provision, and the co-production process is an attempt to change this. The concept of co-production still needs development and input from all stakeholders, and the goal of the Hearing is to gather input for the concept of co-production.
The first presenter was Mr. Franz Wolfmayr, EASPD president. He spoke about the need to develop a concept of high quality services that are in line with the UN CRPD. In the past 50 years, the concept of services has been based on big institutions and the legal frameworks have followed in this direction. In the past 20 years there has been some change, and several community based and mobile services have been developed, but these are not widespread yet. In the old regulations the quality of services is defined by “input criteria”, such as the amount of square metres in an institution, but in reality this doesn’t represent the quality of services. A system of “outcome measurement” would be more appropriate, and to link this with funding (Procurement Directives). Evaluation of services and measures is needed, to identify and promote good practices to member states.
The next speaker was Mrs. Analise Cotone on behalf of Maria Luisa Cabral, Head of the Disability Unit of the European Commission. She first explained the importance of the currently ongoing review process on the implementation of the Convention on the Rights of Persons with Disabilities in the EU by the UN CRPD Committee, which provides a momentum for evaluation and change. She stressed the commitment of the European Commission to this process, which is seen not only as a priority, but as an obligation (also see the Statement of Commissioner Thyssen, http://www.edf-feph.org/Page_Generale.asp?DocID=13854&thebloc=34280). Also this year, the first period of implementing the European Disability Strategy 2010-2020 is evaluated, and the CRPD review process will provide a useful reflection for the future.
The partnership and involvement of DPOs is getting more attention at the European level. The EU frameworks that regulate the European Structural Funds for the next 7 years contain “ex ante conditions” (which relate to the expected benefits of the use of funds) and also contain provisions for partnership, including a code of conduct for monitoring prescribing to include all stakeholders, with special attention to engage groups that are affected but find it hard to influence these processes, explicitly including persons with disabilities.
And there is a European “Rights Equality Citizens Programme” (REC, http://ec.europa.eu/justice/grants1/programmes-2014-2020/rec/index_en.htm) which includes options for funding activities that are advancing awareness and the implementation of the UN CRPD, and is also accessible for NGOs and DPOs.
Next was Dr. Gauthier de Beco, lecturer in Disability Law at the University of Leeds, who made a theoretical analysis of the term co-production in relation to support and services for persons with disabilities: “to produce support and services … in partnership with persons with disabilities”. He mentioned that the definition of support was not given by the UN CRPD, and is quite hard to define a framework for service design and delivery, without having a definition of support. In relation to partnership, guiding principles can be derived from CRPD article 33 on national implementation and monitoring, and the Paris Principles, which can be applied to the entire process of co-production.
The last speaker of the first panel was Mr. Alain Faure, EDF’s Executive Committee expert on access to services (European Disability Forum). He was concerned that co-production would lead developments back in time, controlled by institutions, and he emphasized that persons with disabilities should define the services. Instead of the concept of co-production, he suggested a structural dialogue. Seeing the reactions of several EDF member organizations in the Hearing, this position of EDF was not representative for the position of all member organizations of EDF.
After the coffee break, the second panel took place , where 9 speakers briefly presented their views or an example of co-production. I was speaker nr. 8. We were all asked to keep our reflections on co-production as short as possible, since we were running out of time.
First was Mr. James Crowe, EASPD vice president, who gave an example from Wales: the Powys Supporting People Team, who have implemented a mind-shift towards the demands of users, not postponing demands, but actively taking care of these, which results in more person centered support and happier staff who feel useful instead of only maintaining rules.
Mr. Brando Benifei, Member of the European Parliament (S&D, IT) spoke about the need to find specific and targeted solutions to remove barriers for inclusion of persons with disabilities, especially in the light of the budget cuts which didn’t improve the services. The question where to put the money for implementation of the UN CRPD is a very relevant one. Co-production may provide some opportunities for stakeholders to reach a critical mass in securing the rights of persons with disabilities.
Mr. Peter Lambreghts, Board member of the European network on Independent Living (ENIL) illustrated his view by explaining that all citizens can meet services that are not really good, and that this is disempowering. Persons with disabilities depend a lot on services and often have many of these experiences, which can be very defining for the quality of life. Co-production would mean that the services are answering to the real needs, and are based on an inclusive working practice, with equal partnership and collaboration and passion. He stressed that the budget cuts are terrible, and have taken us back in time, not towards progress.
Mrs. Maria Nyman, director of Mental Health Europe (MHE) explained that co-production is linked to empowerment. Many persons with psychosocial disabilities, users and ex-users of psychiatry, feel powerless, alienated, having no control, no choice, no dignity and a loss of rights. The co-production approach of MIND, a UK based organization, shows many benefits, such as less stigma and fear, more trust (which is so badly needed in mental health care) and new resources because the user skills are supplementary to the professional skills, making care more diverse and better. The issue of forced treatment may seem off-topic, but it isn’t. Legal capacity is a basic right and is necessary for co-production. Free and informed consent is the basis for all co-production and for all services and support.
Mrs. Senada Halilcevic, Chair of the European Platform of Self-Advocates (EPSA) and Vice-president of Inclusion Europe, spoke about the challenges in the de-institutionalization process in Croatia, where persons with intellectual disabilities are moved from big institutions to homes in the community, but often still having no control over their own lives and facing the same attitudes (such as getting no choice in where to live and with who, no money, no key of the door etcetera). Article 19 on living independently and being included in the community means more than just being put “in the community”. It also means access to all rights and services in the community equal to other people, including schools, banks, museums, hospitals and so on. This needs to be realized. Freedom depends on support, and it is needed to find solutions together.
Then Mr. Mark Wheatley, Executive Director of the European Union of the Deaf (EUD) explained co-production from a sign language perspective. There is a lack of sign language interpreters in Europe (1 on 73 persons), and also the payment is often problematic, which is an elementary barrier for inclusion and therefor also for co-production. Also at EU level sign language interpretation is often forgotten, which is not a proper way of running a business. It would be a good idea for the EU to have its own sign language interpreter to make the EU processes more accessible. EUD advocates for a regulation on sign language, which legislates the right to sign language interpretation in each member state.
Then Mrs. Aurelie Barranger, Director of Autism Europe, explained that involvement of persons with disabilities should be meaningful, not limited. She mentioned a good practice of involvement and coproduction by the consultation platform “Ask Autism” in relation to the Autism Act in 2009, and the Autism Strategy in 2010 in England.
Then it was my turn to reflect on co-production on behalf of the European Network of (Ex) Users and Survivors of Psychiatry (ENUSP). I presented my own project: using Family Group Conferencing to avoid forced psychiatric interventions, which is a practical example of supported decision making, and a way of shifting power to the ‘object’. The approach of Family Group Conferencing is an example of co-production in the community in practice.
(For more information you can see my previous but similar presentation at the Conference of State Parties in New York in 2013: http://punkertje.waarbenjij.nu/reisverslag/4567654/presentation-text-on-eindhoven-model-cosp )
Then Mrs. Bernadette Grosyeux, EASPD Executive Committee member and Treasurer, gave an example of a changed approach towards children in Centre de la Gabrielle, where the number of institutionalized children is being reduced as a result of these efforts. Much attention is now given to providing clarity in communication, and to support the children to express their selves by various means, and to answer the questions in an easy-to-understand way. Services are now more tailored to needs and desires.
There was only little time left for discussion. An interesting question was raised on how service-providing NGOs relate to EASPDs work, but there was no clear answer to that question yet. It seems that the traditional split-up between service-providers and NGOs is changing, which may be a good sign of progress.
The closing words came from Mr. Luk Zelderloo, EASPD Secretary General, who briefly reflected on the Hearing as very interesting and very rich of ideas. He summarized that EASPD picks up that there is a need to clearly define co-production (no tokenism, but producing together). Several good practices of coproduction between service providers and persons with disabilities exist. Co-production can be seen as a shift in power, which results in better outcomes for users, better quality of jobs for staff, efficiency, innovation and a broader holistic approach. And last but not least, a legal basis for co-production can be found in the UN CRPD, which can be translated into European legal frameworks, policies and practices.
After the Hearing, several people said that they found my presentation inspiring, which of course made me feel good.
It was my first time at an event of the European Association of Service providers for Persons with Disabilities (EASPD), and I didn’t know the organization. I was a bit sceptical on the forehand, because I have been confronted with terrible views of service providers at several occasions, but I tried to have an open mind. Today, I had a quite positive experience, but of course this discussion wasn’t focussed on mental health laws, but on a rather non-controversial topic such as co-production – so I still have some reserves in terms of trust. That is my reality. Just like Maria Nyman of MHE said, trust is needed before co-production can really exist. It was an interesting event.
Afterwards I visited some friends in Brussels, had a really good time, and then I spent my evening in the trains back to Eindhoven, totally exhausted after 5 intensive days of international events. I had a great time in Warsaw and Brussels :)
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Je kunt nu ook Smileys gebruiken. Via de toolbar, toetsenbord of door eerst : te typen en dan een woord bijvoorbeeld :smiley
