Early September 2022, the European Commission has launched a European Care Strategy that aims to ensure access to quality, affordable and accessible care services across the EU Member States. The objective is to improve the lives of persons in need of support – including people with disabilities – and the people caring for them, professionally or informally. Autism-Europe welcomes the fact that the strategy addresses some of the most pressing issues faced by autistic people and their families. However, we call for binding provisions to ensure its implementation. It is also key to ensure that disabled people’s right to choose the type of support services they want is respected. Fostering adequate training of professionals should also be central to deliver quality services for autistic people.
Autistic people often lack access to necessary lifelong support services as evidenced by multiple studies and reports– including access to early childhood education and care. It is notably due to a lack of available funding for services and adequate training of professionals in autism in the care sector. Accessible support services for people on the autism spectrum are not sufficiently available across EU regions, in some instances forcing autistic people and their families to travel or relocate (even sometimes to a different country) to access the right therapy and support. Many families must pay for private care services, which are often particularly costly.
The European Care Strategy aims at improving the availability, quality, affordability and accessibility of care services in Europe. The Commission recommends that Member States draw up national action plans to address current challenges – notably by:
- ensuring that long-term care is timely, comprehensive and affordable, allowing a decent standard of living for people with long-term care needs
- increasing the offer and mix of professional long-term care services (homecare, community-based care and residential care), close territorial gaps in the access to long-term care, roll-out accessible digital solutions in the provision of care services, and ensure that long-term care services and facilities are accessible to people with disabilities
- ensuring high-quality criteria and standards for long-term care providers
- supporting informal carers, who are often women and relatives of care receivers, through training, counselling, psychological and financial support
- mobilising adequate and sustainable funding for long-term care, including by using EU funds
- improving working conditions and attract more people – in particular men – to the care sector, notably by improving wages and working conditions.
The Strategy is accompanied by two Recommendations for Member States on the revision of the Barcelona targets on early childhood education and care, and on access to affordable high-quality long-term care taking into consideration people with disabilities.
The European Commission also invites Member States to work together to:
- close the gap between attendance in early childhood education and care of children at risk of poverty or social exclusion and the overall population of children.
- meet the challenges of long-term care by carrying out joint analytical work, exchanging best practice and mutual learning.
- strengthen social protection for long-term care and improve the adequacy, availability, and accessibility of long-term care services
At a recent joined Webinar on Stakeholders’ Initial Reactions to the EU Care Strategy, EDF representative highlighted that “care recipients should be in the driving seat in terms of what care they want to receive.”
Autism-Europe welcomes the EU Care Strategy as it addresses many current challenges experienced by autistic people as well as informal and professional carers. We also appreciate the focus on improving access to community-based services. However, we are concerned that the Strategy lacks enforceable provisions to ensure that Member States actually deliver on its priorities. Member States must be held accountable to implement the strategy. The Strategy should also have a well-resourced monitoring mechanism, with EU institutions and agencies. In order to monitor progress, clear benchmarks, indicators and adequate data collection in various support services specifically for people with disabilities and autistic people are necessary.
The rights-based perspective to disability and care, and in particular the freedom of people with disabilities and autistic people “ to choose their place of residence and where and with whom they live on an equal basis with others” according to Article 19 of the UN Convention on the Rights of Persons with Disabilities, should also be central to the strategy. Therefore adequate forms of support services in the community should be made available accordingly, and in particular the ones that foster independent living.
Finally, adequate training of professionals in autism should also be a priority. We call for the inclusion of compulsory training on evidence-based habilitation strategies and accessible communication for autism, as well as on the rights-based perspective to disability in the curricula of all relevant professionals in the care sector.