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“Forgotten”: Declaration of the COFACE Disability Platform for the rights of persons with disabilities and their families

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The Members of the COFACE Disability Platform for the rights of persons with disabilities and their families, supported by the wider network of COFACE Families Europe, urge the EU, national and local governments to take immediate action to address the consequences of the current social and health crisis on persons with disabilities, their families and their carers.

On the 24th of June 2020, the members of the COFACE Disability Platform gathered to discuss their priorities for the year to come and the consequences of the current social and health crisis on persons with disabilities and their families.

The lockdown has been a challenging period for persons with disabilities and their families. Persons with disabilities, who generally have more care and support needs than others, are therefore more vulnerable to the impact of low-quality or inaccessible care and daily support services.

Their family carers who already provided 80% of long-term care in Europe, were suddenly from one day to the next the sole supporters of their family members and under a mix of financial, physical and psychological stress. Reconciling work and family life became completely impossible, providing care and rehabilitation for which many had no training and without a moment of respite throughout the lockdown.

However, while their difficult conditions were well-known, persons with disabilities, their families and their carers have too often been forgotten in the preventive, health, economic and social actions that EU and Member States implemented to tackle the crisis.

In the stunning but usual silence of the media and political arena, in the last few months persons with disabilities have been denied access to health and basic support. Too many have not been prioritised for treatment, sometimes with fatal consequences. In residential facilities the rate of contagions and deaths has been much higher than for the rest of society. The care and support to many persons with disabilities and their families, including parents with disabilities themselves, stopped due to lack of funding or impossibility to ensure safety, with those in the most vulnerable situations left unattended. Often, family carers had no choice but to organize and provide, on their own, the necessary daily support to their closest ones in need and they continued their invisible work with no support and recognition. Many have felt forgotten and abandoned, living in distress and suffering for this imposed role, but also for seeing the physical and mental health of their family members deteriorating in front of their eyes. As a consequence, tensions and risks of crisis and violence in the families have increased.

In our societies, where accessibility and inclusion of all are not priorities, the exclusion of persons with disabilities from culture, education and social activities can be determined by what may seem like details, but which are essential. For instance, in many countries the lack of subtitles, and the use of not accessible devices and platforms led to the exclusion of children with disabilities from long-distance education and from educational TV shows. Avoiding this is not a matter of costs, but primarily a matter of making a conscious choice of including all children in education.

Despite these difficult circumstances, with less funding, fewer staff and devices, the work of our member organisations did not stop and they adapted instead to the new reality. Workers and volunteers showed solidarity, experimenting with new methodologies and technologies to provide continued support, with strikingly good results. Many of them increased their advocacy efforts for more visibility of the needs of children and adults with disabilities or ageing-related illnesses, their parents, carers and family members through data collection and actions towards national and local governments.

This crisis has magnified the many inequalities in treatment of persons with disabilities, older persons, their families and their carers, as well as the lack of interest of society in their plight. It has also demonstrated the vulnerability of their acquired rights of non-discrimination and inclusion. A huge effort remains to take persons with disabilities and age-related illnesses, their families and their carers out of their condition of second-class citizens, unable today of exercising their fundamental rights on an equal footing with others.

The Members of the COFACE Disability Platform, supported by the wider network of COFACE Families Europe, urge the EU, national and local governments to take immediate action towards these objectives:
  • Ensuring the health and safety for persons with disabilities and their families through reaffirming the importance of and implementing ethical choices leaving no one behind, and carrying out a proper assessment on the consequences of the lockdown measures on the health and wellbeing of children and adults with disabilities, their parents without forgetting parents with disabilities, carers and family members, and plan structural reforms to address them;
  • Ensuring that persons with disabilities, parents, family carers and professional carers can respond to the emerging needs through developing trainings adapted to the COVID-19 crisis and securing structural reforms for the full inclusion of persons with disabilities and their families in society, starting from education and fostering exchange from the specialised to mainstream sector;
  • Ensuring continuity of quality care and support, while fostering the deinstitutionalisation process through the financing of local services in the community, compensating for the new costs emerged with this crisis in terms of staff, training and medical equipment; collect data on the consequences of the COVID-19 health crisis on persons living in congregated settings and assess the quality of the services provided. Use this momentum to boost the transition from institutional to community-based care in order to prevent new health risks, and to foster the inclusion in society, the right to choice and the well-being of all persons that need long-term care, including of the persons who are currently living in residential facilities;
  • Making the right to education respected for all children, including children with disabilities by ensuring that education contents and platforms are accessible to all and that teachers know how to use and create accessible educational material; and by planning policy actions to achieve inclusive education in all European countries, as affirmed by the UN Convention on the Rights of Persons with Disabilities (UNCRPD);
  • Recognising and rewarding the role that parents, family and informal carers took up in filling the gaps in the education and long-term care systems before, during and after the health crisis by assessing their needs and providing possibilities for flexible working arrangements, the possibility to take up adequately paid leaves, and benefit from respite services, income support, and financial support to buy the IT, educational and assistive devices they might need;

“The new EU budget must have persons with disabilities and family carers as explicit target group and the future Child Guarantee must help in ensuring rights for all children with a two-generation approach that tackles also financial inclusion and work-life balance for parents and carers.” said Chantal Bruno, co-chair of the COFACE Disability Platform and associate member of the Committee for the Defence and Promotion of the Rights and Freedoms of Disabled People and of the Europe, International and Overseas network of APF France handicap, UNAF administrator and Secretary General of the French Inter-associative Collective of Family Carers.

“The EU and its Member States must adapt their economic response to ensure the right to life, health and well-being for all, including children and adults with disabilities and their families and pave the way for long-term reforms towards inclusion, with systems allowing community-based and personalised support as a structural part of the new European Disability Strategy”, said Sylvie Hirtz, co-chair of the COFACE Disability Platform and Director of the Services Department of APEMH, which provides services and resources for children and adults with intellectual disabilities and their families in Luxembourg.

Today, we are assessing the consequences of what just happened and it is not clear if a second wave of contagion will hit Europe in the near future. It is clear that if Europe and its Member States want to be true to their founding values, they must put at their centre the health, safety and well-being of the most fragile in society, including persons with disabilities and their families, starting from those living in institutions and with higher support needs.

The COFACE Disability Platform and its member organisations are ready to build together a meaningful S.H.I.F.T. towards the inclusion of persons with disabilities and their families, in partnership with all stakeholders in society.

For more information, contact: Irene Bertana, ibertana@coface-eu.org

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