Study the possible involvement of people with disabilities

Study the possible involvement of people with disabilities (2017-1-HU01-KA104-035702)

Increasing international demands that the advocacy and service provider organizations involve their main beneficiaries into the leadership of the institution. The Hand in Hand Foundation aim is to promote the human right of the persons living with disability by involving them into its leadership. Within the framework of the project, our staff memebrs and an expert by experience person who has been working with us for some time study and learn the regarding practice of the Finnish KVPS organization within 3 five days study visit . Each organizational unit involved, so all the professional and operational leadership and professional working groups (methodological, occupational, opinion-forming) members can verify the good practice of stakeholders around a different aspect. The good practice will be built into the operational work within a structured framework. We will analyze, adapt and build into our daily practice the suitable and adaptable elements of the best practice. The primary impact of the project is the developing organizational culture of the Foundation. In addition directly reflected in the quality of life of those involved in the development and who can work with us in shaping the organizational profile. Social impacts among people with disabilities to appear in a new role and strengthening inclusion.

We will pass on our experience and developing perating practices to other organizations and to introduce a number of other projects.

During the study visit to Finland we examined the involvement of people with disabilities in certain activities of the organization. For me, as a project leader, it was important to see how they can be involved in the development processes of the different activities of the organization, what kind of tasks can be assigned to them and how they can be part of decision making. During the visit, we became acquainted with several organizations that cooperate with our host, KVPS (Kehitysvammaisten Palvelusäätiö). This foundation is one of the largest providers of social services in Finland. The process of deinstitutionalisation is taking place in the country in the current years, and KVPS plays a very important role in it. A significant part of the gambling revenue in Finland is given to the foundation, which then buys housing for people with disabilities in which they can live independently. The flats/apartments are selected jointly by the people with disabilities, taking into account their needs and preferences, and also ensuring so that the housing can be sustainable from the income of those who live in it. KVPS is the owner of the apartments and the people with disabilities living in it are the tenants who pay the rent. Those who cannot live on their own due to their condition are living in smaller, community-based homes that are owned either by a civil organization or by the local government. Although people living in homes need more support, thanks to the person-centered approach they also take part in decision-making in questions related to their lives. During a visit to one of these homes, we learnt from the staff that the testing and the daily use of the curricula of the STEPS project, which was implemented in a strategic partnership with us as an Erasmus + project in the previous years, has brought some changes in the operation of the home. Using the tools and methods described in the STEPS project, the staff recognized that the people with disabilities have skills and abilities that they had not recognized previously and started to involve them more actively in different activities. Another important experience was the meeting with Auli Leiniö. Auli is a person with disabilities living in a supported living home and working at KVPS for 4 days a month. He works there as a project assistant, and he is responsible for recording, processing and summarising the results of the evaluation forms related to the different trainings held at the organisation. The Finnish rules determine how much people with disabilities are allowed to earn monthly so that they remain still entitled to the cash benefits they receive from the state or from their local government. These benefits fundamentally cover their living costs and needs, so the number of people on the open labour market is not high. Auli found out for himself that he wanted to work at KVPS. A few years ago he travelled to Austria through an Erasmus + project of KVPS, where he met several people with disabilities who had administrative jobs, and he also felt like doing it. He wrote a letter to the KVPS staff describing his wish to work at the organization, and after overcoming several administrative barriers, eventually he was hired. It was inspirational to see his spiritedness and steadfastness, and it was a special experience that, although indirectly, this was due to an EU project. During the study trip, one of the most important experiences was that small steps could be taken to involve people with disabilities in getting acquainted with the different work processes, to give space to their opinions, and to base some development processes on their experiences.

Studying the involvement of people with disabilities in the management of the organization
Summary report of the 1st study tour

Practice and impact of involving people with disabilities in the operations of the organization at the operational and management level, as well as in external communication and public opinion-forming activities.

Name of participant: Ákos Pordán, managing director
Host organization name: KVPS, Wärjäämö, ASPA
Location of the Study Tour: Tampere, Helsinki (Finland)
Date: 25-30 March 2018

During the study trip meetings in connection with the involvement of people with disabilities in management activities were: KVPS management, Wärjäämö day-care institution, Metse's self-advocacy organization.
We have seen different ways of selecting people with disabilities. At KVPS the persons involved in the management are not service users of the organisation. Their involvement did not go from one day to the next. It took nearly 10 years to succeed in choosing the skilled persons with mental disabilities who could accomplish this task and to secure the safe environment for them. At Wärjäämö (offering direct services to service users) people with disabilities are selected from their own service users and they operate the services in a democratic way. Here, the selection goes faster, and the involved persons may change as well. We also met an independent legal entity, a self-advocacy organization (METSE) whose members are people with disability. In over 20 years they managed to gather 1000 members.
The inclusive activities are also different at each organization. Wärjäämö: at the service level meetings are held on a regular basis that are led by persons with disabilities in a formalized way, involving officials. KVPS: the management meets every two months and they invite also a board member with disability. METSE: meetings are held on a monthly basis. The selection procedure is different at the different levels: service level, management level, or at the self-advocacy organization.
Persons with disabilities receive continuous professional training and support tailored to their abilities in the form of easy-to-understand materials and personal advice. In carrying out the activity, people with disabilities receive the necessary professional and administrative assistance at all levels necessary to perform the activity. They get reimbursement in connection with their work, but they don't get a salary. Moral and friendly appreciation means motivation for them.
The exchange of people with disabilities involved in activities is different at the different organizations:
Wärjäämö: There are minor changes at the service level, but in case of more important positions, like the person of the president has not changed for a long time. If a new client arrives or an old one goes away, this can make a change.
KVPS: The person with disability involved in the management was selected 10 years ago, he has a stable position, it does not change.
METSE: They work with a roughly stable membership, no major changes.
There are no major difficulties with the involvement of people with disabilities nowdays. This process has been going on for more than 20 years, so the system is now running smoothly with the right mechanisms.
In Finland the involvement of persons with disabilities at different levels of the organisations started in the 1990s following Swedish and English examples. Finland has deep democratic engagement and experience both in the school system and at the workplaces, so it has been relatively easy to introduce these mechanisms and to involve people with disabilities.
The greatest successes were observed in the following areas:
By involving people with disabilities, services and institutions are more likely to take into account the needs and opinions of the clients. Institutional mechanisms have been introduced to involve people with disabilities, which significantly increased the service users' satisfaction. Overall, the quality of services has increased considerably.
Regarding our subject all of the above practices are good and to be followed: from the organizational management point of view KVPS, involving persons with disabilities into the work of the board of trustees, on the service level the practice of Wärjäämö, involving clients in the management of their own destiny, and in the case of METSE, the organized and supported operation of the self-advocats.



Studying the involvement of people with disabilities in the management of the organization
Summary report of the 1st study tour

Practice and impact of involving people with disabilities in the operations of the organization at the operational and management level, as well as in external communication and public opinion-forming activities.
Name of participant: Éva Kovács, Head of methodological department
Host organization name: KVPS, Wärjäämö, ASPA
Location of the Study Tour: Tampere, Helsinki (Finland)
Date: 25-30 March 2018

Examined area: Kehitysvammaisten Palvelusäätiö (KVPS)
Name of hosts: Katri Hanninan, Kirsi Konola

The involvement of people with disabilities started in 2008. At the beginning they decided that people with different support needs shall be involved (the organisation provides services only to people with intellectual disabilities).
The following considerations were taken into account during the selection process:
- representing a typical group / need
- having some special interest
- being geographically accessible and the journey involved shouldn’t cause him/her a disproportionate burden
- gender is represented in roughly equal proportions.

It is important that they work well together, and that there is no conflict between the members.
The involvement of the persons depends on the organizational activities of the given period, the undertakings and the interests of the persons. On one hand, they act as a project team and on the other hand as a kind of advisory body to the organization. As the members are KVPS users, they can also give feedback on a variety of operational issues.
The staff members of the organization also invite them to consultations and to be experts (depending on the area and activity), thus they also serve an advisory role.
The 10 people who form the advisory body have been gradually found and involved. Today, this is a stable team, no new members are planned to be taken.

The activity of the organization was well-known to everyone involved because they are also service users. Thus they need support rather than preparation when doing their tasks.
So they receive support in their work. There is a facilitator to help organizing things, scheduling appointments, taking notes etc. It is evident that they receive the documents related to the consulting cases they are involved in in an easy-to-understand format. The persons with disabilities involved in the activities of the organisation do not receive any salary. The prestige associated with the task and the occupation seems to be a motivational tool for them.
An annual plan is prepared that includes those plans, programs, projects that the persons with disabilities want to participate in and those that they want to implement themselves. They are supported in the planning and implementation by the facilitator or by the specialist in the organization. The facilitator takes part in the work of the group besides his/her other duties, and therefore it requires organization and reorganization from his/her side.

The persons with disabilities take part in the different projects according to their own interests. Many of them write blogs, others organize groups or leisure activities in the local community. They participate in events, campaigns, give interviews, write articles, speak up in events if they need to. They also work in international programs. In addition to their own projects, they primarily comment on the organization's annual operational plans, participate in meetings and planning sessions.
The persons with disabilities actively participate in the life of the organization, they have a noticeable impact.
We did not see any difficulty with the involvement of persons with disabilities. It is natural that people with disabilities need more support in some things, and in those things they receive help from the staff.

At KVPS, it is part of the organizational culture is that they pay attention to each other and to the needs of others, and this suits well also to working with people with disabilities. The supportive attitude of the staff is important, so the involvement of persons with disabilities in a more hierarchical, patriarchal system would be unthinkable.
The organization needs to work in a way that takes into account the needs and opinions of the persons with disabilities. KVPS has prepared lot of material about how persons with disabilities can participate better and easier in shaping their own lives. These are short, targeted publications.
During their joint work, there have been many good stories, many new relationships have been established and a good work culture has developed. Many projects have also been implemented as a result of the joint work, which specifically addresses the creation of a more effective social participation of persons with disabilities.
In many cases, naturally, the parents stand also in the background. The organization itself considers the value of "parents are the voices of people with disabilities" important, but in Finland, people with disabilities live with stronger self-determination, which can be greatly strengthened by the responsible tasks they undertake in their work.
The involvement of persons with disabilities as a whole is a good practice. The voice of persons with disabilities is displayed at the management level, in the operation and in the individual projects. They have been clearly integrated into the organization over the last 10 years.
The Inclusive Research Methodology: different themes are being elaborated with this method, they ask for the opinion of persons with disabilities using the method and then make the results easy to understand. Topics covered so far: aging and the needs of aging persons, work, adulthood. Workshops involving persons with disabilities are held to elaborate the themes, the questions are formed on the basis of these workshops, and then during the interview, a facilitator helps answering the questions and recording the answers, but basically the interviewee and the interviewer are also persons with disabilities.

Other good practices we have seen:
Me ytse - the advocacy organization of people with intellectual disabilities in Finland. The organization is led by persons with disabilities, it employs 25 people and its work is helped by a number of volunteers and trainees.
Mission: training and teaching people with intellectual disabilities in order to speak up for their interests.
Main principles: respect for personal dignity, advocacy and freedom of choice, full recognition of personal experiences, teamwork and cooperation. The representative body consists of 4 people who have financial responsibility, and the decision-making council consists of 8 people with intellectual disabilities. They decide on the direction in which the organization is going and what activities it takes, and what activities it initiates. On strategic matters, they decide in the annual meetings together with the members. Currently they have 35 local groups, and they are growing steadily. They regularly collaborate with Inclusion Finland (KVPS's founding organization, a parent organization) and with KVPS. https://www.tukiliitto.fi/toiminta/me-itse-ry/

The experiences of a person with disabilities involved in the work of the organization:

Examined area: Advisory body (KVPS)
The person with disabilities involved in area: Krisse Pääskynen - http://www.kvps.fi/blogit/meidan-blogi/yhdessa-oloa-ja-vaikuttamista

Krisse has been working in the group for 10 years, he usually works 1-5 days a month.
He is motivated to participate in the organization's work to enforce his interests and to be able to influence the widest range of areas to promote the social inclusion of people with disabilities.
In his work he considers the opportunity to develop international relations and to be able to participate in international projects as his biggest personal success. He is involved in more than one field of work, he is involved in the work of Me ytse, and also in the work of local groups.
He is satisfied with the activities he does at the organisations and he was very interested in the situation of Hungary. It is natural for him to cooperate and to work together with others in advocacy activities.
In his work, travel is the greatest difficulty he needs to face. At the same time, he loves to travel, and after his daily programs at work he goes shopping, has a coffee somewhere and looks around in the town. He receives travel reimbursement in connection with his work related travels and a daily allowance for his activities as an expert.



Studying the involvement of people with disabilities in the management of the organization
Summary report of the 2nd study tour

Name of participant: Zsuzsa Rozgonyi, program manager
Host organization name: KVPS
Location of the Study Tour: Tampere (Finland)
Date: 10-16 June 2018

During the study visit to Finland we examined the involvement of people with disabilities in certain activities of the organization. For me, as a project leader, it was important to see how they can be involved in the development processes of the different activities of the organization, what kind of tasks can be assigned to them and how they can be part of decision making. During the visit, we became acquainted with several organizations that cooperate with our host, KVPS (Kehitysvammaisten Palvelusäätiö). This foundation is one of the largest providers of social services in Finland. The process of deinstitutionalisation is taking place in the country in the current years, and KVPS plays a very important role in it. A significant part of the gambling revenue in Finland is given to the foundation, which then buys housing for people with disabilities in which they can live independently. The flats/apartments are selected jointly by the people with disabilities, taking into account their needs and preferences, and also ensuring so that the housing can be sustainable from the income of those who live in it. KVPS is the owner of the apartments and the people with disabilities living in it are the tenants who pay the rent. Those who cannot live on their own due to their condition are living in smaller, community-based homes that are owned either by a civil organization or by the local government. Although people living in homes need more support, thanks to the person-centered approach they also take part in decision-making in questions related to their lives. During a visit to one of these homes, we learnt from the staff that the testing and the daily use of the curricula of the STEPS project, which was implemented in a strategic partnership with us as an Erasmus + project in the previous years, has brought some changes in the operation of the home. Using the tools and methods described in the STEPS project, the staff recognized that the people with disabilities have skills and abilities that they had not recognized previously and started to involve them more actively in different activities. Another important experience was the meeting with Auli Leiniö. Auli is a person with disabilities living in a supported living home and working at KVPS for 4 days a month. He works there as a project assistant, and he is responsible for recording, processing and summarising the results of the evaluation forms related to the different trainings held at the organisation. The Finnish rules determine how much people with disabilities are allowed to earn monthly so that they remain still entitled to the cash benefits they receive from the state or from their local government. These benefits fundamentally cover their living costs and needs, so the number of people on the open labour market is not high. Auli found out for himself that he wanted to work at KVPS. A few years ago he travelled to Austria through an Erasmus + project of KVPS, where he met several people with disabilities who had administrative jobs, and he also felt like doing it. He wrote a letter to the KVPS staff describing his wish to work at the organization, and after overcoming several administrative barriers, eventually he was hired. It was inspirational to see his spiritedness and steadfastness, and it was a special experience that, although indirectly, this was due to an EU project. During the study trip, one of the most important experiences was that small steps could be taken to involve people with disabilities in getting acquainted with the different work processes, to give space to their opinions, and to base some development processes on their experiences.



Studying the involvement of people with disabilities in the management of the organization
Summary report of the 2nd study tour

Name of participant: Adrienn Gazsi Dr., lawyer, head of the legal aid service of Hand in Hand Foundation
Host organization name: KVPS
Location of the Study Tour: Tampere (Finland)
Date: 10-16 June 2018
The experience gained about the involvement of people with disabilities
The organizations visited, the legal background associated with the involvement of people with disabilities, focal points, good practices

Name of the Host Party (Presentations, Program):
1. Kehitysvammaisten Palvelusäätiö (KVPS): colleagues (chairman, executive, expert by experience) (How are self-advocates involved? - Katri Hänninen; How can I influence? - Auli Leiniö)
2. Aspa (Presentation of programs, presentations)
3. Tukena Vuores (Residential home – head of the residential home, social care workers)
4. Inclusion Finland, Tulppaanitalo, (Jutta Keski-Korhonen)
5. Nokia – day-care centre (https://www.nokiankaupunki.fi/sosiaali-ja-terveyspalvelut/vammaispalvelut/; Workshop for the elderly with intellectual disability)
6. NEO-OmaPolku (day-care centre)

The implementation of the UN Convention on the Rights of Persons with Disabilities and the EU Disability Strategy at national level and in the operations of the organization. Learning about the Finnish legislation regarding the rights of people with disabilities and the regulations of the organization.
The organizations visited during the study tour, focusing on the selection process to involve people with disabilities in the activities of the organizations.
Remarkable good practices:
- Kehitysvammaisten Palvelusäätiö (KVPS): the strategic goal of the organization is to involve people with disabilities in the decision-making process. Selection: the person applies for a job (See the presentation of Auli Leiniö - How Can I Influence?). Parents of persons with disabilities are currently involved in the organization's board of trustees, and employees with disabilities work on the same basis as other employees.
KVSP promotes awareness of the capabilities and contributions of persons with disabilities.
Good practice: The transparency of the recognition of the expertise, merit, skills and contributions of the employees with disability.

KVSP’s services:
Persons with disabilities have access to a range of in-home, residential and other community support services, including personal assistance necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community.
We have seen very good examples (elements and model projects) of recognizing the diversity of persons with disabilities, providing real needs-based services, having person centered planning (such as having personal budgets, disability card with QR codes, health care financing reform, recognition of property rights of the tenants in the housing services), that might be reasonable to be implemented also in Hungary.

- Tukena Vuores (residential home): Persons with disabilities are involved in the classical self-advocacy forums of the social service system (residential meetings).
They have developed a practice in which people with disabilities are actively involved in decision-making processes about programs, including those directly concerning them.

- Inclusion Finland: The inclusion of people with disabilities through their family members and their professional supporters. In Finland, in the development and implementation of legislation and policies to implement the Convention, and in other decision-making processes concerning issues relating to persons with disabilities, persons with disabilities are actively involved directly or through their representative organizations.
Voting is accessible to people with disabilities and they can exercise their political rights, which guarantees the free expression of the will of persons with disabilities as electors.

- NEO-OmaPolku (day-care centre) provides people with disabilities the possibility of inclusive programs, employment opportunities that support their individual autonomy and independence, including the freedom to make their own choices. The organization places great emphasis on the fact that people with disabilities develop their talents on an equal footing with others (e.g. in art) and that people with disabilities can have access to the new achievements in information and in communication technologies.

- ASPA: Attempts to actively reach and inform people with disabilities to reduce the risk of becoming victims of abuse, neglect or negligent treatment, maltreatment or exploitation both within and outside the home (in residential homes), emphasizing sexual education.
There are programs to combat stereotypes, prejudices relating to persons with disabilities, including those based on sex and age.

- Nokia (day-care centre): It is a relatively segregated form of employment, but with open labor market elements. All employees are people with disabilities or with reduced working capacity.

The general experience is that there are forward-thinking policies and organizational practices based on the CRPD principles and provisions:
- The CRPD principles apply to the implementation and evaluation of the organizations' plans and programs.
- They strive to ensure that persons with disabilities can exercise their rights fully without discrimination.
- The action plans related to persons with disabilities and the general principles on equal opportunities for people with disabilities are gaining momentum in national, regional and international policies.
- Naturally, in Finland, despite the progressive legislation and commitments, people with disabilities still face barriers to their equal participation in society, the organizations still need to make a lot of effort to eliminate them (e.g. making the facilities accessible and the materials easy to understand).



Studying the involvement of people with disabilities in the management of the organization
Summary report of the 2nd study tour

Name of participant: Gábor Palkó Dr., lawyer, expert by experience
Host organization name: KVPS
Location of the Study Tour: Tampere (Finland)
Date: 10-16 June 2018

From June 10 to June 16, 2018, I participated in a study tour organized by Hand in Hand Foundation in Tampere, Finland, where the staff members of KVPS (Kehitysvammaisten Palvelusäätiö) hosted us. KVPS is a foundation in Finland that specializes in offering special services to people with intellectual disabilities (e.g. supported housing), continuously improving these services.
During the study trip we studied the foundation and the practices of the foundation and its partner organizations. As a person with disabilities and as a lawyer, it was particularly important for me to see the good examples in Finland and the legal solutions that made it possible.
The legal system of Finland resembles the Hungarian legal system in the main elements of the legal institutions that are based on the Roman law. They both contain the concept of legal ability and capacity to act in the same way and with the same content and also the related restrictive measures. It is an important difference that their system of guardianship treats the status of inalienable rights differently. It is a fundamental principle in both legal systems that the exercise of certain rights cannot be delegated to others, such as the political rights. In Hungary a person under restricted guardianship cannot exercise these rights. In Finland, the restriction of the capacity to act does not affect those rights.
KVSP's affiliates (Incluson Finland, Aspa, NEO-OmaPolku, Tukena) provide access to supported housing to a large number of people with disabilities, which seems to me to be one of the most important activities of the foundation. In Finland, the system of public funding of this activity - the redistribution of gambling revenues - also provides the Foundation with the necessary financial resources. The Foundation also employs a number of people with disabilities, so I do not think the expertise is missing from the Foundation's work either.
During the study trip, I have been able to look at the situation in Finland on the "field", among which I would like to highlight the day-care centre in the city of Nokia, where people with disabilities can perform value-creating work at the same time as they receive the necessary development services.
To summarize, I can say that the study trip was instructive for me, as it allowed me, a lawyer not working in the social sector, to take a glimpse into the practice and legal system of another country. What I have seen and experienced, in my opinion, has become an integral part of my thinking on the subject, and I am confident that I will use these experiences later on. I also believe that the examples, solutions and the legal environment in Finland can be fully adapted in the local level, in the work of Hand in Hand Foundation (e.g. working together with people with disabilities and their further involvement in the decision-making process) and at national level (e.g. the dissemination of the legal institution of supported decision-making or the revision of the restrictions of the capacity to act). In my view, the adaptation of these good practices would be beneficial to both the Foundation and Hungary, and ultimately to all people with disabilities.

In Hungarian