Roadmap for Systematic Data Collection

The Roadmap for Systematic Data Collection was commissioned by the Ministry of Social Affairs and Health. It was published by the Finnish Institute for Health and Welfare (THL) in 2020. The roadmap aims to build a picture of current and future needs for information on services for people with disabilities sourced from studies, research and statistics.

The whole work paper can be found at:
Roadmap for Systematic Data Collection in Services for People with Disabilities

Abstract

This publication was commissioned by the Ministry of Social Affairs and Health. It aims to build a picture of current and future needs for information on services for people with disabilities sourced from studies, research and statistics.

The human rights perspective

The purpose of the roadmap is to serve legislative drafting – especially impact assessments – and to help monitor and evaluate the practical implementation of legislation, especially in a changing situation. The human rights perspective is paramount in the roadmap. The objective of disability legislation is also underpinned by the human rights perspective, and its realisation must be monitored and evaluated in addition to and in connection with individual services.

Disability services have an essential impact on the lives of persons with disabilities, enabling the realisation of their autonomy, inclusion and equality in society. Many people with disabilities are completely dependent on services in order to survive and cope with the ordinary activities of life. This is why examining the availability and quality of services is essential. It is also required under the UN Convention on the Rights of Persons with Disabilities.

Qualitative information needed

While plenty of information is already available, most of it is quantitative rather than qualitative. As the needs for assistance, help and support of every person with disabilities are highly individual, the mere number of services provided does not adequately describe the impact of the services on a person’s everyday life.

Much more specific information is also needed on services enabling an ordinary everyday life, which can be provided in many different ways.

In order to obtain reliable information on the effectiveness of services, extensive studies conducted before and after the entry into force of new legislation must be analysed and supplemented with separate reports. This is the only way to obtain sufficient information before the Kanta information system is fully developed.

The legislative reform is pending

The chapter on key issues related to monitoring the reform of the disability legislation paints a picture of the most important monitoring and evaluation needs created by the pending legislative reform. As the number of these needs is high, efforts have been made to prioritize them. Services whose monitoring and evaluation will be particularly important include service accommodation and transportation services.

In addition, monitoring and evaluating the delivery of the coaching and support service to be provided under the new legislation will be important, as a number of services that were previously regulated under different statutes will be combined in a new way, and some completely new services will also be introduced.

The new Disability Services Act

Another important viewpoint related to monitoring and evaluation is the target group of the new Disability Services Act. Firstly, will people who currently fall through the cracks of the current legislation receive better services in the future? On the other hand, will more people end up in this position as the two Acts are integrated?

Safeguarding the growth and development of the child and maximizing his or her personal potential require special sensitivity and flexibility of the service system. This is why the delivery of services for children and young people in their daily lives must be carefully monitored and evaluated.

The purpose of the Act is to respond to the individual needs for assistance, help and support of a person with a disability, taking into account such factors as their life situation and the circumstances in which they live. The diagnosis will no longer play a decisive role in the future.

As a result of the reform, the assessment of service needs and service planning as well as the client’s participation in service delivery will grow in significance. This will also increase the need for monitoring and evaluation.

Why do we need information on services for people with disabilities?

The position of people with different disabilities and different life situations should be examined from the perspective of equality and the realisation of human rights. Monitoring data on disability is needed in order to understand the position of people with disabilities and those whose functional capacity is reduced in different ways.

Information on basic and special services

Disability comes up in health and social services in at least two different ways. Persons with disabilities use the same health and social services as other people. In addition, they need special services intended for persons with disabilities. From the perspective of the social welfare and health care service system, it would be essential to obtain information on the need for services and their equal availability, effectiveness and costs.

The information should be able to respond to the following disability-related questions and information needs:

Are services intended for the general population provided to persons with disabilities as indicated by their individual needs?
How are special services targeted?
Are there persons with disabilities in Finland who do not receive special services even if they need them?
How is the quality of special services – effectiveness, availability, etc.?
Financial monitoring – total costs and client fees
Impact of changes. Which change affects them and how?
Monitoring indicators.

Monitoring and evaluation

Monitoring and evaluation are particularly important in situations of change, and a proactive approach should be taken. As part of the monitoring and evaluation, the impacts of both legal norms and their implementation should be examined from the perspective of persons with disabilities and those who organise, fund and provide services.

The equality and human rights of persons with disabilities are realized through the joint effect of statutes and their practical implementation. The collected data describes service delivery and thus contributes to enabling the monitoring, assessment and supervision of services for disabled persons.

Finance and services – equity

Economic issues have also always been examined in the context of disability services. In most cases, such examinations have been based on scrutinizing individual clients or services.

The impacts of a legislative amendment on the use of services and in particular their costs were examined in a study published in 2013, “Study on the impacts of Disability Services Act amendments of 2009 on client numbers and costs”.

Personal assistance promoted equality

The publication noted that declaring personal assistance a subjective right for persons with severe disabilities had promoted their equality and inclusion in society's functions. The report looked at the legislative amendment’s impact on the client numbers and costs of services for disabled persons, especially personal assistance. The results indicated that the number of clients had gone up even more than anticipated as the amendment entered into force and that personal assistance was offered to increasingly old clients.

Whereas personal assistance was offered to a larger group of people, the number of hours provided for individual new clients was smaller on average than before. Consequently, the average number of hours granted had decreased. The results also showed that the legislative amendment had increased the total costs more than anticipated, by nearly EUR 40 million.

Local government finance statistics

Most of the data on the finance and costs of services for people with disabilities come from the local government finance statistics compiled by Statistics Finland. These statistics describe the income and expenditure, investments, financing, assets and liabilities of municipalities and joint municipal authorities as well as their final statement data.

For the services for people with disabilities, the local government finance statistics provide data on the costs of personal assistance by region. The figures are available in proportion to the population of the region and the number of (personal assistance) clients as well as in absolute terms. Data on the costs of transport services are also available, both as absolute costs and in proportion to the population of the area.

Data available by region

Data on the total costs of services and support measures provided under the Disability Services Act are also available by region. For housing, data are available on the net operating costs of institutional care for persons with intellectual disabilities and on the net operating costs of housing services with 24-hour care for persons with disabilities.

The six largest Finnish cities collect highly accurate data on both services for disabled persons and services for persons with intellectual disabilities. These annual reports provide information on disability services in Oulu, Tampere, Turku, Espoo, Vantaa and Helsinki (Kuusikko).

Kuusikko reports on disability services (in Finnish, Kuusikkokunnat)

What data are needed for the monitoring and evaluation?

A comprehensive knowledge base is needed for monitoring, assessing and steering the impacts of disability services. Currently, there are gaps in the knowledge base of social services, including data on services for people with disabilities and especially community-based social welfare services.

The existing data sets contain statistics on certain services, based on which the situation of the services for persons with disabilities can be partly described. Statistical and other reports are often data-based rather than phenomenon-based. The end result is a fragmentation of data, which makes it difficult to form an overall picture.

The social welfare register's information needs

A project aiming to develop the social welfare register has mapped the register's information needs.

Register data on social services for persons with disabilities are inadequate and do not provide information on such areas as the following:

Clients receiving services on the basis of a disability by service (separately for those receiving services by virtue of special legislation)
Information on applications for services for people with disabilities and their outcomes, or decisions to accept or reject the application (%)
Time limits for granting services
Duration of client relationships with services for people with disabilities
Reasons for the termination of the client relationship with services for people with disabilities
Modes of service use, for example visits and digital services
Multiple client relationships or the use of multiple services
Services provided by health and social services and by other providers
Operational and financial information

Extensive data collection reform

THL is planning an extensive reform of the data collection for the social welfare registers, which will encompass the clients and data on the services they receive. To enable the new data collection to meet different information needs, data must be collected on all the different service tasks of the social welfare services, different stages of the client process, and numerous different client documents. The data sets currently defined as part of the data content, which also includes services for people with disabilities, are:

Data on the client relationship
Data on service initiation – notification, contact, application, and client history entry on service initiation
Service needs assessment data
Service plan data
Decision data
Calculation data
Data on the initiation and termination of social service provision
Data on client history entries (meetings, negotiations, contacts)

Need of allocation of resources

If implemented, the data collection reform would take place in stages over several years. A precondition for implementing this reform is that different actors will allocate significant designated resources to, for example, producing definitions, providing instructions, building technical capabilities and analysing the data.

As reaching the vision of the new register data collection on social welfare will require major changes in both the information system infrastructure and record entries in social welfare, the data collection reform must be rolled out in manageable steps.

However, there are also information needs related to social welfare costs and personnel that cannot be met by collecting client data. Cost and personnel information will be excluded from the reform of data collection in social welfare, and data collection in these areas will be developed in other projects.

The legal basis already exists

The legal basis required for the data collection reform already exists in terms of the right to access information of the Finnish Institute for Health and Welfare (THL). In 2019, the Act on the Finnish Institute for Health and Welfare (668/2008) was amended, and the Act on the Statistical Service of the National Research and Development Centre for Social Welfare and Health was repealed. Previously, the latter Act had contained highly detailed provisions on individual personal data collected by THL. The amendment gives THL the right to collect comprehensive individual personal data on various social services, such as services for people with disabilities.

Updated: 7.12.2023