In the Alliance for Individualised Support we affiliate 50 parental, patient and umbrella organisations that have decided to join forces in order to achieve the necessary changes in the social system of the Czech Republic in the direction of individualised support and care.
Targets of Alliance
1) To combine the potential of parental and professional organisations in order to achieve the common goal of systemic change in individualised support for patients with greater demands for care
2) Establishment of the Alliance and its expert commission for the concentration of know-how and promotion of systemic change.
3) Creation of a systemic model of individualised support.
4) Change of perception of the established system of social care on the part of the wider public and responsible officials/politicians
5) Enforcing the systemic change in the provision of individualised support
Founding organisations of the Alliance for Individualised Support:
- Naděje pro děti úplňku (Hope for Children of the Full Moon)
- Asistence NGO
- ČOSIV (Czech Society for Inclusive Education)
- Parent Project
Our goal is the introduction of systemic changes, built upon the following basic standards:
- An individual approach and adaptation of support to the requirements of each person.
- Inter-disciplinary co-operation between social, healthcare and educational services.
- Availability of services in each region, within the natural environment of clients and their family members.
- Support for carers – family members, informal carers and professionals.
- Development of in-the-field, outpatient and relief services, adaptation of residential services and social housing to the requirements of persons with greater demands for support.
- Reinforcement of internal sources of clients for integration and leading of an independent and satisfied life in contact with family and friends.
Paths to implementing changes of the social system
- We conduct investigations, map the issues and the identified problems.
- We combine the potential of parental, patient and professional organisations. At present we affiliate up to 50 parental, patient and umbrella organisations which defend the interests of people with health disabilities or chronic illnesses, with greater demands for support and care.
- We establish an expert panel which proposes a systemic model of individualised support and a manner of implementation. We co-operate with experts from the academic sphere also in practice.
- We aim to alter the established perception of the present system of social care on the part of the wider public and responsible officials.
- We make documentary videos, that serve as a tool to raise awareness of the lives of people with various forms of disability and the lives of their families and carers. These documentaries also open the door to politicians and responsible officials, as they clearly explain the issue and the need for change.
- We promote systemic changes in the legislation.
Analysis of the problem which the Alliance is addressing
The present social system in the Czech Republic is failing the most vulnerable – children, adults with disabilities or illnesses so serious that they require individualised support and care. The cause is especially the manner of financing the network of services that applies to date (not according to the requirements of specific people, but according to formal rules, e.g. the number of employees or beds), as well as lack of knowledge about the situation – insufficient awareness about the number of these persons and their requirements. The state is not capable of systemically taking care of the most vulnerable – it is failing in the area of securing the requirements of people with greater demands for care, there is no co-ordinating network for the people who most need care, and for their families. The result is an insufficient network of services, a lack of capacities especially in services of a community type – assistance, in-the-field, relief but also residential (which refuse more complicated cases). The burden remains especially on families, which in the case of 24/7 care are overloaded in the long term, causing their social exclusion and resulting in their economic inactivity, often leading to the breakup of such families. Informal carers suffer from health complaints caused by long-term stress and a large physical burden. They have no idea what will happen to their children when they are no longer available to care for them.
The system of provision of social services (and connected services) in the Czech Republic is failing in contact with persons who are demanding in terms of care. The analysis, made by one of the founders of the Alliance, called “The availability of services for persons with autistic spectrum disorders in the Czech Republic and Europe” demonstrates that in the majority of regions, services are unavailable (or are available only within an insufficient capacity). We have compiled individual case reports (the documentary serial “Lives of Families”), from which it ensues that carers (most often parents or other close individuals) perform either all the care or a substantial part thereof, without the assistance of professionals, without methodical guidance, and without the possibility of relief.
Manner of solution to the problem
The aim of the Alliance is on one hand to establish a sufficient body of knowledge and experience, which will represent unique expertise regarding the situation and requirements of people with various types of health disabilities, combined disabilities and persons with large demands for care, as well as concentrated expertise on the services being provided and their specifics, and on the other hand to generate adequate social pressure and an advocacy background for a systemic change directed towards individualised support and diversified financing of support, according to clients’ requirements.
The activity of the Alliance includes the establishment of an independent expert group which shall propose a new system of individualised social support and care, both in the provision of social services and in the co-ordination of services on the boundary between the healthcare and social realms, overlapping with the area of education and the securing of further connected requirements (e.g. in housing), linking up with new mechanisms of monitoring the requirements of clients (diagnosis/“needs assessment”) and their carers, and conducting an assessment and evaluation thereof. At the same time it shall design an implementation model (for how to implement the new system of individualised support in practice, and identify what needs to be systemically changed, e.g. in the field of legislation). In this we shall start out from the principles of good practice abroad, and we are co-operating with the Faculty of Social Sciences of Charles University in a comparative analysis and an analysis of their transferability to the Czech Republic. Last but not least, we analyse the economic demand factor of the new model of individualised support based on a knowledge of the number of clients in need, and within the framework of modelling optimised support. A component shall be a standard cost-benefit analysis of individualised support in comparison with the existing system.
Alliance for Personalized Support is being supported by the Open Society Fund Prague from the Active Citizens Fund. The programme promotes citizens’ active participation in the public life and decision making and builds capacities of civil society organizations. It promotes respect of human dignity, freedom, democracy, equality, the rule of law and the respect for human rights including the rights of persons belonging to minorities. Active Citizens Fund came to the Czech Republic in September 2019 with the goal to support CSOs regardless of their size and experience. It is operated by the Open Society Fund Prague, Committee of Good Will – the Olga Havel Foundation and Scout Institute. The Active Citizens Fund is financed from EEA and Norway Grants 2014–2021. With EEA Grants, Iceland, Liechtenstein and Norway contribute towards a reduction in economic and social disparity and the strengthening of mutual cooperation in Europe. One of the important objectives of the programme is strengthening bilateral cooperation between donor and beneficiary states through financial contributions in specified priority sectors. It supports bilateral relations between the donor states Norway, Iceland, and Liechtenstein and the Czech Republic.