UN Convention on rights of persons with disabilities

To what extent do people with communicative multiple disabilities and their communication partners in the Netherlands have access to communication aids? This right forms part of the UN Convention on the Rights of Persons with Disabilities. How does this situation affect their social inclusion? That is the research question of this project from the research group Relational Care at the Centre of Expertise of Health Innovation. The project seeks solutions to improve access to communication aids in the complex playing field of healthcare providers, health care insurers and government agencies. 

Context

The research project serves as a case study for the implementation of the UN Convention and how it works in practice for access to aids. In the Netherlands, tens of thousands of people with communicative multiple disabilities (CMD) need assisted communication (AC). People with CMD typically experience multiple, mutually reinforcing impairments in perceiving, processing, understanding and/or expressing speech, writing or sign (language). Their disabilities and abilities vary greatly, but they have one thing in common: they cannot speak or have difficulty speaking and they need an alternative. It also touches deeply into the lives of a larger group, such as their parents (mostly informal carers), other family members and healthcare professionals. They should also be given access to assisted communication. Research shows that communication problems between people with CMD and their loved ones have a major impact on their quality of life and on social participation. 

Impact

Several perspectives play a role in this interdisciplinary research project on access to aids for people with disabilities. This could include the sociological, legal, administrative and economic perspectives, as well as the perspective from the healthcare sector.  To our knowledge, this scientific knowledge has not yet been collected in the Netherlands or in other countries. The project can contribute to solutions for people with disabilities and their communication partners and make their 'voice' heard in society, especially as regards relevant government agencies. This project aims to provide knowledge concerning impeding and facilitating factors across different agencies and processes for accessibility to the required aids. After all, a just society provides access to facilities for all its members.

Objective

The research project focuses on understanding the issues of access to aids for people with multiple disabilities, the rights and obligations of the UN Convention and solutions for improvement. 

Target group 

The target groups of this project are: 

• people with disabilities, especially those with communicative multiple disabilities;
• communication partners of people with disabilities, especially their parents and other persons close to them;
• other communication partners of people with disabilities, such as healthcare professionals;
• relevant government agencies and healthcare insurers. 

Method

First, desk research is conducted on how the Netherlands has implemented the UN Convention. A multiple case study survey is then conducted among the target groups. In-depth interviews, questionnaires, observations and document analysis are used for this purpose. The observations are used to see how the process of applying for assisted communication develops. 

Case study research is an iterative research process where different steps may be repeated or where steps run in parallel. Quantitative methods are used to support qualitative research to identify, for example, the cost of communication aids, application processing times, and force field analysis of different actors, namely clients, healthcare insurers, healthcare providers and government agencies. 

Results

The research provides publications with answers to the following questions: 

1               How has the Netherlands implemented the UN Convention? What barriers do people with disabilities and their informal carers face in the application process at different agencies and what does this mean for their social participation? 

2               What solutions can be developed for people with disabilities and their informal caregiver(s) and other communication partners, to improve access to aids and thus their participation in society? The research focuses on removing barriers to accessing these facilities in the complex playing field of healthcare providers, health insurers, regulations and government agencies. 

Duration

The project started on 1 September 2024, the completion date is as yet unknown. 

Team 

• Han Dommers
• Yvonne van Zaalen 

Collaboration 

For this project, The Hague University of Applied Sciences is collaborating with: 

• Radboud University.
• Foundation Milo

Funding 

This project is funded by PBM funds and the Research Group Relational Care. 

Contact 

Han Dommers ([email protected])