COFACE Disability Expert meeting 2018 25-26 June 2018, Sitges - - PowerPoint PPT Presentation

COFACE Disability Expert meeting 2018

25-26 June 2018, Sitges

Welcome by Chantal Bruno, President, COFACE Disability

Tour de table – Round of introduction

Overview of the day

9.30 – 10.30: Update on EU developments 10.30 – 10.50: Coffee break 10.50 – 11.50: Upscaling the Study on Family Carers and Planning a COFACE Advocacy Strategy 11.50 – 12.50: COFACE’s position on long-term care: the family dimension 13.00 – 14.00: Lunch 14.00 – 15.00: Exchanges between members on training programmes for family carers 15.00 – 15.30: Any other business, Next meeting, potential hosts

Update on EU developments

1. European Accessibility Act 2. EEG/DI, next EU Multi-Annual Financial Framework 3. EU Disability Strategy 4. European Pillar of Social Rights (ECEC, inclusive education, disability, long-term care, childcare etc.)

European Accessibility Act

European Accessibility Act – State of Play

Background

• The European Commission published the draft text of the European

Accessibility Act (EAA) on 3 December 2015. Link to the text of the EAA:

• http://eur-lex.europa.eu/procedure/EN/2015_278
• Article 9 of the UN CRPD on accessibility (ratified by the EU and almost

all Member States, except Ireland)

• Adoption of the EAA follows the recommendation of the UN CRPD

Committee during the 2015 periodic review (Para 90 of the Concluding Observations calls for the EU to adopt the European Accessibility Act within 12 months after the publication of the Concluding Observations

European Accessibility Act – State of Play

Potential

• The proposed Accessibility Act is an essential piece of legislation with the

potential to improve the inclusion of persons with disabilities and older people in society by ensuring their access to important goods and services across the EU

• Relevance for families: the lack of accessibility of goods and services has a

negative impact and hinders the participation of the whole family in society if a family member is facing burdens in accessing goods and services (e.g. train stations)

European Accessibility Act – State of Play

Proposed Scope

• The legal basis of the proposed legislation is Article 114(1) of the Treaty of

the Functioning of the European Union (TFEU). This means that the act has an internal market basis, instead of a non-discrimination approach. The purpose of the act is therefore to ‘contribute to the proper functioning of the internal market and remove and prevent barriers for the free movement of accessible products and services’. The EEA aims to harmonise currently existing accessibility legislation and policies in the EU Member States to ensure the free movement of goods and services. The Directive discusses in detail the obligations on different economic actors: manufacturers, importers, distributors and service providers.

European Accessibility Act – State of Play

The following selected products and services are covered in the EAA: Products:

• General purpose computer hardware and operating systems;
• Self-service terminals (Automatic Teller Machines, ticketing machines,

check-in machines);

• Consumer terminal equipment with advanced computing capability related

to telephony services;

• Consumer terminal equipment with advanced computing capability related

to audio-visual media services.

European Accessibility Act – State of Play

Services:

• Telephony services and related consumer terminal equipment with advanced

computing capability;

• Audiovisual media services and related consumer equipment with advanced

computing capabiliity;

• Air, bus, rail and waterbone passenger transport services;
• Banking services;
• E-books, E-commerce;
• Certain EU Public contracts and consessions;
• The Preparation and implementation of Programmes under Regulation (EU) No

1303/2013 including the European social and Cohesion Fund.

European Accessibility Act – State of Play

• On-going negotiations: Parliament position, Council position
• There have been three trilogue meetings (March 5, April 12 and May 15)
• Aim: finalising negotiations under EU Bulgarian Presidency (end of June)
• Two more trilogues: 12 June, 26 June 2018
• If there is no agreement, the file will pass on to the next Presidency (Austria)

Preliminary agreements so far:

• Exemptions based on disproportionate burden and fundamental alteration
• Use of European standards and technical specifications to prove compliance

with the Accessibility Act

• Annex I
• Enforcement mechanism

Topics with no agreement reached so far:

• Emergency services. The Parliament aims at covering them fully, whereas

the Council excludes the call centres.

• Self-service terminals. The Parliament covers them, but the Council limits

them to only those used in the provision of the covered services.

• Transport services, particularly urban modes of transport. The Parliament

wants to cover them more broadly.

• Accommodation services, only proposed by the Parliament.

Topics yet to be discussed:

• The link of the Accessibility Act with other Union acts, such as Public

Procurement or the EU Funds Regulations, supported by the Parliament and rejected by the Council.

• The inclusion of built environment in the provision of certain services as

proposed by the Parliament.

• The exemption of microenterprises, a red line for the rapporteur. The

Council proposed to cover them when these microenterprises work with products.

• The use of the CE-marking, supported by the Council and rejected by the

Parliament.

What to do?

EEG/DI, next EU Multi-Annual Financial Framework #EUBudget

• In 2014-2020 programming period, the

European Structural and Investment Funds (ESIF) have provided a valuable addition to poverty reduction and social inclusion measures, including deinstitutionalisation (through the ex- ante conditionalities)

• EU has limited competence on social

policy – change to be made through funding (e.g. European Social Fund)

EEG/DI, next EU Multi-Annual Financial Framework #EUBudget

• Transition from institutional to community-based care is key to create

inclusive societies and to close down segregating institutional care facilities in line with the UN Convention on the Rights of Persons with Disabilities

• May 2018: European Commission has proposed the EU Budget 2021-27
• June 2018: European Commission proposes regulation of the Funds –

generally positive with specific mentions of DI

• 2018-2020: Negotiation on the future EU Budget
• COFACE is co-leading the Task Force on Funding Post-2020 in the

European Expert Group on the Transition from Institutional to Community- based Care

Some of the claims of the EEG for the next EU Multi- Annual Financial Framework #EUBudget

• Further increase of the 25% of ESF+ allocated to social inclusion
• Ensure that the positive incentive and negative obligation for investing in

deinstitutionalization reforms are mentioned in both the proposed ESF+ and ERDF regulations

• Maintain the proposed enabling condition 4.3 mentioning the shift from

institutional to community based care

• Strengthen the Partnership Principle and the European Code of Conduct on

Partnership

• More information available at: https://deinstitutionalisation.com/

EU Disability Strategy

• Disability Strategy 2010-2020: Accessibility, Participation, Equality,

Employment, Education and training, Social protection, Health, External Action

• Challenges: not linked to CRPD Articles, no indicators/benchmarks
• 2017: Mid-term evaluation report published
• European Commission assessment how to proceed Post-2020 with the

Disability Strategy, commitment to implement the CRPD Committee’s Recommendations

• There will be a public consultation on the future Disability Strategy

European Pillar of Social Rights (ECEC, inclusive education, disability, long-term care, childcare etc.)

• Social policy framework for the EU: 20 principles to function as a compass for

EU policy-making

• November 2017: Proclamation of the Pillar
• Concrete proposals so far: Work-Life Balance Package (legislative and non-

legislative elements), Directive Transparent and predictable working

conditions, EU Labour Authority

• May 2018: European Commission adopted a proposal for a Council

Recommendation on high quality early childhood education and care systems – strong on inclusive ECEC systems

• Funding of the Pillar? – prerequisite for successful implementation
• Future packages? E.g. on Childcare, Long-term care etc.

Coffee break

Upscaling the Study on Family Carers and Planning a COFACE Advocacy Strategy

1. Background to the stocktaking study on the challenges and needs of family carers 2. Study questions and data collection 3. Findings of the study 4. Main problems faced by family carers 5. Recommendations to policy makers

• Current social and demographical changes
• European Commission’s Work-Life Balance package proposal
• Lack of comprehensive data on the needs and challenges of family carers
• Concerning trends and challenges reported from COFACE members
• COFACE’s work in the European Expert Group on the Transition from

Institutional to Community-based Care (EEG)

• 1. Background for the Stocktaking Study

European Reconciliation Package (R-S-T)

• Resources
• Services
• Time arrangements

• 2. Study questions

1. Do our collected data align with the general trend regarding family carers (gender, age, employment situation etc.)? 2. Is the work of family carers recognized (financial, social etc.)? 3. Are there services in place to support family carers and their relatives with support needs? 4. Are there flexible time arrangements in the labour market to support family carers in reconciling their care and work life? 5. How did the caring role impact the quality of life of the family carer (financial, physical health, mental health etc.)? 6. Which are the countries that do better in supporting family carers?

Data collection

• Sample is not representative
• Data collection (Snowball method, online data collection)
• Data is not weighted
• Targeted only family carers (e.g. no information on other family

members)

• Geographical imbalance (Western-Eastern, North-South Europe)

Limitations

Collected data

• 3. Main findings (quantitative and qualitative)

Family carers:

85% women

14,6% men 0,3% other

Gender-Age ratio

Most common groups receiving informal care: 1. Adults with disability (28,5%) 2. Older persons with support needs (22%) 3. Children with disability (20%) 4. Chronic disease (11,7%) 5. Mental health problems (7,7%)

72% of our respondents live together with the person they provide care to.

Recipients of informal care

Caring time hrs/week by country ‘I am a carer almost 24 hours per day. I have very little time to go out, even if it is for

• shopping. I feel like a

prisoner.’ (France, female, aged 55-64)

Occupation beside caring role

Resources

Financial compensation as family carer by country 73% don’t receive any financial compensation for their work, as carers.

Social insurance for carers by country

Almost 2/3 of the respondents (63.7%) don’t have access to any kind of social benefits.

Access to support services

‘If persons with disabilities were receiving a personal budget, they could live more independently and it would ease the life of their family members, too.’ (Italy, female, aged 55-64)

…family carers access respite care where they live

Only 1.3% of all respondents receive regular psychological support provided by the State, or local government

2/3 were never offered the

• pportunity to take part in any

training, or skill development

11% reported sufficient community-based support services available

Available leave schemes and flexible time arrangements

Is it possible to take time off to fulfill caring role?

47% of respondents don’t know, if flexible time arrangements (e.g. job sharing, telework, smart work) are available in their country.

Most common solutions:

• Quitting job (21%)
• Reduce working

hours (21%).

Impact of being a carer on quality of life

• 43% of the respondents have

developed health problems, including physical, or mental health, due to their caring role.

• 1 of every 3 respondents has a

hard time to make ends meet as a consequence of their caring role.

Experiencing poverty by intensity of formal care

• 4. Main problems faced by family carers

time

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Lack

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little social

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m e n t a l 1 t a k e free

go find son

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tired long Less lot

live a i d

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high I m fear

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loss lives

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cost

• Better access to community based services (free respite, in-home

care, support in household tasks)

• Financial support and coverage of social security for family carers
• Better access to information and simplified administrative

procedures

• Easier reconciliation of work and care (carer’s leave, flexible

arrangements at work)

• Awareness raising for carers and persons with support needs
• Prevention of mental and physical stress (psychological support)
• 5. Recommendations

‘Local authorities and social services which should improve my situation additionally complicate my life.’ (Germany, male, aged 55-64) ‘The biggest challenge we face is the constant fear of getting sick and not having anyone to replace me.’ (Portugal, female, aged 35-44) ‘You cannot imagine the sacrifices that we make, we even sold our house to be able to pay for the assistive devices that were not reimbursed.’ (France, male, aged 55-64) ‘Combining work with family care is very complicated. There is a rejection, and total incomprehension for the situation you are suffering from.’ (Spain, female, aged 35-44)

Conclusions

‘Policy makers must take us

• seriously. Without us

everything collapses.’ (Germany, female, aged 55-64)

The current situation, in which 80% of care work in Europe falls on family carers, who are left without adequate financial compensation, social rights, or a pension scheme, is simply not sustainable.

Launching breakfast event in European Parliament (30/11/2017)

70+ participants (EC, EP, Council, NGOs)

Feedback from national and EU level so far

• Positive feedback from EU policy and decision-makers
• Welcomed by COFACE members – good point of reference
• Study presented to national stakeholders: Athens (09/2018),

Flanders (Autumn 2018)

• #FamilyCarersEU campaign
• Possible translation to other languages (e.g. FR) – other languages?
• Useful for national advocacy purposes (e.g. PT)
• Media coverage

Discussion on the Communication strategy

• f the Study on the challenges and needs
• f family carers in Europe

Presentation by Ana Perez

COFACE’s position on long-term care: the family dimension

1. Update on EU policy developments in the area of long-term care 2. Sharing of members’ experiences/main challenges about long-term care in their countries 3. Agreement on main approaches, issues to highlight in position paper (e.g. situation of ageing carers, necessary support to informal carers, investment in community-based/in-home services for persons with different support needs etc.)

EU policy developments in the area of long- term care

• Growing ageing population
• Principle 18 of the European Pillar of Social Rights on Long-Term Care:

“Everyone has the right to affordable long-term care services of good quality, in particular home-care and community-based services.”

• EU Council Conclusions during the Estonian Presidency in 2017:

Enhancing Community-Based Support and Care for Independent Living

• EU-OECD project on long-term care workforce – excluding informal carers

Reality check from the national level

• What is the situation in your country?
• What is long-term care?
• How is long-term care provided? Are there enough community-based facilities?
• What are the gaps?
• What is the vision to respond to these new demographic changes?
• What role for informal carers? Are they part of the long-term care workforce?
• Any other issues?

Main approach towards long-term care

Proposed tentative timeline

• May 2018: First discussion at the COFACE AC about LTC position paper
• June 2018: First discussion in COFACE Disability Expert Group on LTC

position paper

• By end August: First draft to be circulated based on discussions in Sitges
• By 15 September: Feedback from COFACE Disability experts
• By 30 September: Final version sent to COFACE AC+ Disability members
• 4 October: Adoption of the position paper at COFACE AC

Lunch break

Exchanges between members on training programmes for family carers Presentation by Chantal Bruno

Any other business, next meeting, potential hosts

COFACE Families Europe Tel: +32 2 511 41 79 Email: mbirtha@coface-eu.org Website: www.coface-eu.org Join us on: Twitter @COFACE_EU and Facebook /COFACE.EU

Get in touch with us!

COFACE Families Europe is supported by the European Union Programme for Employment and Social Innovation (EaSI)