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The European Commission is asking everyone what they think about
access to health services in the European Union.

Inclusion Europe is answering that people with intellectual disabilities
have difficulties to access to health services in the European Union.

Often, people with intellectual disabilities have difficulties to communicate
with doctors or nurses.

Sometimes, they don’t receive the treatment they need because of that
and they can die.

There are also health workers who do not treat people with intellectual
disabilities properly because of their disability. This is called discrimination.

Health workers need to be well trained to know how to help and communicate
with people with intellectual disabilities.

The European Union and the European countries have to take into account
people with intellectual disabilities when they do research about access to
health services.



The European Commission and the Expert Panel on Effective Ways of Investing in Health have launched a public consultation on ‘Access to health services in the European Union’. Inclusion Europe has highlighted the issues and consequences of lack of access to health care for people with intellectual disabilities.

The consultation addresses barriers to accessing health care and explores policy measures to overcome them. Ways to improve equity could include matching health needs and financial resources, affordable and accessible health services, the availability of a sufficient number of health workers with the right skills, well-equipped facilities within easy reach, the availability of quality medicines as well as medical devices and services that are relevant and cost-effective.

Why does access matter?

For people with intellectual disabilities, the intellectual accessibility of health care and the accessibility of communications of the health care staff are of the utmost importance. Studies demonstrate, for example, that the dental health of people with intellectual disabilities is far below the status of the non-disabled population. The difficulties in communication may also result in problems with appropriate informed consent to medical interventions - with the result that some necessary treatments may not take place.

Evidence of unmet needs for health care

Inclusion Europe member, Mencap, has released a report titled "Death by Indifference", which outlines examples how this lack of accessibility of health services leads directly to the death of people with intellectual disabilities. Members of Inclusion Europe in all countries of the European Union report the same experiences.

The members of Inclusion Europe have concluded that there is evidence of institutional discrimination in the health services against people with disabilities in all EU Member States. Institutional discrimination against people with disabilities consists of the collective failure to provide appropriate and professional services to people because of their disability. Leading to serious health disadvantages, and even the death of people, it manifests itself in processes, attitudes and behaviour. Health policies at Member State and European level have so far missed to address this discrimination.

Need for health workers with the right skills, in the right place

Due to lack of adequate training of health care staff, diagnostic overshadowing is a key barrier to people with intellectual disabilities getting equal treatment. Diagnostic overshadowing is when health care staff makes dangerous faulty assumptions by wrongly believing that a presenting problem is a feature of someone’s intellectual disability. This can often lead to wrong or no diagnosis of a medical condition that needs treatment.

When assessing and managing patients with intellectual disabilities, health care professionals are often ignorant of:

  • the signs and behaviours expressed by people with an intellectual disability, and in particular the clues that indicate distress in an individual
  • the key role that carers play in interpreting distress cues
  • the issues around consent and capacity
  • the difference between a professional’s opinion of a patient’s quality of life, and a patient’s opinion of their own quality of life
  • Firstly, data on premature deaths of people with disabilities in the health systems must be collected in order to assess the size and scope of this issue and to develop national and European policy responses.
  • Secondly, data collected by complaints systems at national level should be aggregated and analysed for signs of institutional discrimination against different patient groups.

It is indispensable that disability and intellectual disability awareness training is an integral component of all professional training of health care staff.

Ensuring equitable access: EU and Member States responsibilities and responses

In European as well as national statistics, people with intellectual disabilities are often an invisible group of citizens. In monitoring the access to health services, this fact directly leads to negative or even life-threatening for individual EU citizens. It is high time that the efforts to monitor access and the consequences of poor access are increased.

Inclusion Europe will inform members about further developments regarding this issue.