Questionnaire – Collecting promising practice in independent living / deinstitutionalisation processes
1. Context
The Strategy for the Rights of Persons with Disabilities 2021-2030 (Strategy) aims to ensure the full participation in society of persons with disabilities, on an equal basis with others, in line with the Treaty on the Functioning of the European Union and the Charter of Fundamental Rights of the European Union, which establish equality and non-discrimination as cornerstones of EU policies. The Strategy supports the implementation of the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), to which the EU and all 27 Member States are individual parties.
As a flagship action of the Strategy, the European Commission is preparing guidance recommending to Member States improvements on independent living and inclusion in the community, in order to enable persons with disabilities to live in accessible, supported housing in the community, or to continue living at home (including personal assistance schemes). With this guidance, the Commission seeks to support the joint commitment of the EU and its Member States towards implementing the right to independent living and inclusion in the community, in line with article 19 of the UNCRPD.
Taking a practical approach, the guidance will seek to illustrate examples of Member States’ experiences in developing the conditions for independent living and carrying out deinstitutionalisation processes, with a particular focus on how EU funds can be used to accelerate progress in these areas. This questionnaire is addressed to public authorities and bodies, at the relevant level of governance (national, regional or local), and to stakeholders in Member States (e.g. private and public service providers, civil society organisations, organisations representing persons with disabilities) involved in projects, investments, or the implementation of measures for advancing deinstitutionalisation processes and developing community support for persons with disabilities. While the focus is on the use of EU funds, examples of relevant measures with support from other funding sources are also welcome.
Objective:
• To collect promising/positive practices and measures, or promising elements of a practice, underway in EU Member States that implement the principles for independent living for persons with disabilities and/or advance with deinstitutionalisation processes, in line with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD),1 with a particular focus on how EU funds can be used to support investments that support these processes.
• To identify funding sources, transferability aspects and sustainability of promising projects/interventions, and to understand how positive practice is assessed.
• To collect promising practice from non-EU countries addressing similar challenges than EU Member States and with transferable elements that can inspire similar interventions in EU Member States.
Acknowledging that all EU Member States are on a pathway towards making independent living a reality for all persons with disabilities, some of the examples of practices may illustrate intermediate steps in a transition. it will be important to see them in the context of the national/regional/local plans and strategies to finalise the transition to independent living in line with UNCRPD. In addition, the perspective of diverse target groups of persons with disabilities (e.g. children with disabilities, older persons with disabilities, persons with intellectual disabilities, women/girls with disabilities, etc.) is important and examples of interventions or services targeting their specific needs are welcome.
It is important to note that other persons without disabilities, such as children deprived of parental care, might also live in institutions (e.g. orphanages). While these groups are not the focus of this guidance on independent living, and not a target group of this exercise, they may benefit from establishing synergies.
Use of results:
The examples collected will contribute to deliver the Guidance on independent living, a flagship of the Strategy for the Rights of Persons with Disabilities 2021-2030,2 and will help to share experience from national contexts in tackling the challenges and in advancing community living and deinstitutionalisation processes, notably through the use of EU funds. An important aspect in this exercise is thus to identify transferable elements to inspire similar measures in other Member States. We aim also to identify upscalable pilot projects showing objective evidence of positive results.
Target group - who will use the results?
Policy makers, managing authorities, public and private service providers, and organisations representing persons with a disability.
Level/scale of intervention:
National, regional or municipal level, from pilot project to large-scale intervention within broader reforms.
In practical terms, practices will be collected around the relevant areas of the forthcoming guidance, listed below. Under each heading some examples of relevant types of interventions are provided.
2. Themes and examples of types of intervention (examples of interventions provided are not exhaustive):
1. Developing support and services in the community (including prevention of institutionalisation, inclusive mainstream services and accessible housing and environments) and transitions to independent living in the community - perspective of different groups:
◦ Prevention: early childhood intervention services to prevent the institutionalisation of children with disabilities; crisis interventions to avoid institutionalisation of persons with disabilities, including e.g. women/girls with disabilities, persons with intellectual and psychosocial disabilities. Support for older person who acquire disabilities to remain living in their homes receiving the services they need.
◦ Support systems and networks: support systems and informal community support structures are composed of peers, family members, friends, neighbours or other trusted persons, like volunteers, who provide the support that a person with disabilities requires for decision-making or daily activities, in order that the person can exercise the right to live independently and to be included in the community. Support systems are key for some persons with disabilities, in particular for persons with intellectual disabilities and persons requiring intensive support, in navigating and determining the support services that they may require.3 (e.g. users’ cooperatives).
◦ Supported decision making: support that enables persons with disabilities to exercise their legal capacity in choosing, managing, initiating and terminating the provision of community-based support, and including financial decisions. Support in exercising legal capacity can be provided as a service funded by the State or through the individual’s support systems and networks.
◦ Individualised community services: personal assistance, home support and care services, including mobile units that support persons with disabilities in their own homes.
◦ Living arrangements: accessible (social) housing; adapted housing (smart homes adapted to respond to needs of people with disabilities, remote monitoring or alert systems etc.), foster care.
◦ Accessible and inclusive mainstream services in the community: inclusive early childhood education and care services for children, other education, employment, social and health care services, ensuring accessibility of infrastructures and services in the community.
◦ New models of governance and organisation of services around the user (integrated, person-centered models), including taking into account the family.
◦ Use of assistive technology and technological aids to support independent living (e.g. digital services).
2. Alternative funding models and budgets:
◦ Personal budgets.
◦ Financial support to persons with disabilities and their families, including for housing.
3. Development and capacity building of care, support and services workforce and of responsible administrative levels:
◦ Recruitment and capacity building for case handlers, personal assistants, care providers, staff involved in deinstitutionalisation processes, or staff delivering community-based services from public authorities, public social services staff, private and third sector service providers.
◦ Capacity building for support systems (training/coaching of families, informal carers, peers, volunteers, advocacy organisations, friends, etc.).
◦ Building capacity on the responsible administrative levels for assessment of needs and selection of providers.
4. Support for self-sufficiency and empowerment of persons with disabilities.
5. Partnership and consultation: Co-production or participation of persons with disabilities and/or organisations that represent them in the design, implementation and/or monitoring of interventions, including in the development of the new service offer as expert by experience. Consultation with peers and family.
6. Innovative elements in national strategies and action plans to operationalize the principles of independent living:
◦ Implementing the principle of choice and control over one’s life.
◦ Models for individual needs assessment.
◦ Improving data (e.g. on persons with disabilities living in institutions and the situation in which they live, on use of personal assistance schemes, etc.) and monitoring systems.
7. Outreach to service users: how persons with disabilities and their families are informed about and offered the new service or change of practice.
8. Public awareness campaigns, changing mindsets for inclusion in the community.
3. Process for selecting practices to be included in the guidelines:
1. Identification and selection. Questionnaires will be processed on a rolling basis as received by the European Commission. Based on the relevance and completeness of the answer, the practices will be shortlisted for possible inclusion in the guidance. The contact point may be contacted to gather further information about the practice by telephone or e-mail.
2. Consultation. The draft guidance with examples will be shared with the Disability Platform4 for consultation.
3. Publication. After consultation, the European Commission will publish the guidelines.
4. Questions
Introductory remarks:
Building on your expertise, we are kindly asking you to complete the questionnaire with the requested information for each practice or project example. Please feel free to send more than one example per country/organisation – in this case, please complete a separate questionnaire for each practice or project example. Please also share the questionnaire with relevant organisations or bodies owning inspiring practice/projects.
The questionnaire collects detailed information about interventions/measures to understand their implementation, how they are assessed and to be able to identify transferable elements. In some cases, a follow up exchange, either through phone or email, might be required during the review process to delve deeper into the points highlighted in examples provided. See detailed steps of the process for collecting promising practice under section 3.
Please note that not all boxes may be relevant to all practices, please indicate “non-applicable” where needed.
While the geographical focus of the exercise is on EU Member States and implementation of EU-funded programmes, examples from other national contexts with transferable elements to EU countries are also welcome.
In case of questions, please contact:
[email protected]
Please submit the questionnaire by 15th of September 2023 to:
[email protected]
1. Contact Information
Organisation
1.1. Name: Ministry of Social Affairs, Republic of Estonia
1.2. Department (if applicable): Department of Social Welfare
1.3. City: Tallinn
1.4. Country: Estonia
1.5. E-mail:
[email protected]
1.6. Telephone: 626 9301
Individual contact details
1.7. Name: Preimann
1.8. First Name: Elen
1.9. Job Title: counselor
1.10. Email:
[email protected]
1.11. Telephone: -
1.12. Type of organisation:
☒ National/federal government
☐ Regional government
☐ Local/Municipal government
☐ National EU funds managing authority
☐ Regional EU funds managing authority
☐ Monitoring body of EU funds
☐ Implementing body of EU funds
☐ Public social service
☐ Not-for-profit social service
☐ Private service provider
☐ Disabled Persons Organisation / Advocacy
☐ Other, please describe:
1.13. Could the person listed as contact point be contacted by a contractor of DG EMPL for a follow-up interview?
☒YES
☐NO
2. Description of the action
2.1. Name of the intervention in English and in original language
2.2. Classification: To which theme and type of intervention does your example of practice belong?
• Themes: you may select up to three answers, please rank the themes according to relevance, from 1 – most relevant, to 3 – least relevant.
__1__ Innovative elements in national strategies and action plans to operationalize the principles of independent living
_2__ Developing support and services in the community (including prevention of institutionalisation and inclusive mainstream services and housing) and transitions to independent living in the community
_3__ Alternative funding models and budgets
____ Development and capacity building of care, support and services workforce
____ Support for self-sufficiency of persons with disabilities
____ Partnership and consultation
____ Outreach to service users
____ Public awareness (changing mindsets and fighting discrimination)
____ Other:
• Types of intervention: multiple answers are possible, please rank in order of relevance, with 1 – most relevant. If your example of practice is not in the list below, please add under “other”.
____ Implementing the principle of choice and control over one’s life
__3_ Models for individual needs assessment
____ Improving data collection/monitoring systems
__1_ Prevention of institutionalisation
__6_ Personal assistance
__7_ Home support, including mobile units
____ Supported decision making
____ Centres for Independent Living, users’ cooperatives
____ Developing support systems and networks (e.g. peer support)
____ Living arrangements
_4__ Inclusive mainstream services in the community
_2__ New models of governance and organisation of services around the user
____ Use of assistive technology and technological aids to support independent living
_5__ Personal budgets
____ Financial support to persons with disabilities and their families
____ Recruitment and capacity building of workforce for services
_8__ Coaching and training of support systems and networks
____ Coaching and training for self-sufficiency of persons with disabilities
____ Organising the consultation and participation of persons with disabilities and/or organisations that represent them
____Reaching out and accessible information for service users, including digital solutions
____ Awareness-raising activities targeting the public, persons with disabilities, family members, policymakers and service providers, changing mindsets for inclusion in the community.
____ Other:
2.3. Target group of the action (it is possible to mark more than one target group)
☐ Children with physical disabilities
☐ Children with intellectual, psychosocial or developmental disabilities
☐ Adults with physical disabilities
☒ Adults with intellectual, psychosocial or developmental disabilities
☐ Women/girls with disabilities
☐ Persons with disabilities who are homeless
☒ Older persons with disabilities
• Workforce:
☐ Care providers
☐ Case handlers
☐ Social services providers
☐ Personal assistants
☐ Other (please specify)
☒ Family / informal carers
☐ Peer support networks
☐ Other (please specify)
2.4. Policy framework: Is your example of intervention embedded in a broader national/regional/local policy or action plan? If so, please provide the title of the legal act, policy document, strategy or plan that the intervention implements.
☒ YES
☐ NO
2.5. Timeframe: what is the operational timeframe of the example provided – Please indicate the starting and finishing year for the intervention.
2.6. What is/was the level of implementation of your example of intervention? (it is possible to mark more than one answer)
☐ Cross-EU
☒ National
☐ Regional
☒ Local (municipality level)
☐ Other (please specify – e.g. non-EU country)
2.7. Funding: Please indicate the financing source(s) for the intervention and related investments, several choices are allowed. Where possible, please indicate the name of the relevant fund/programme and what measures were funded (complementarity of funds).
☒ EU funds
☐ National/federal budget
☐ Regional programme
☐ Municipal/Local budget
☐ Private funding/foundation or other resources
2.8. Amount of investment (in EUR): What is the overall budget of the intervention? Different options possible, depending on scale and timeframe (e.g. one-off investment, permanent intervention)
_________ per year
_Years 2017-2022 cost was 7 million EUR, for the next EU period (2023-2025) we have allocated approximately 12 million EUR in total.
If applicable, amount or share from EU funds (amount in EUR/share in %):
2.9. Problem description: Please describe the main challenge(s) in your national/regional/local context, which the practice seeks to address. Use data where available. (100 words)
2.10. Summary: Please describe your practice. What elements are particularly promising to advance the right to independent living? In your specific national/regional/local context, what is the advantage of the practice compared to the previous situation? Please refer to the criteria for your assessment, including independent criteria (e.g. implementing recommendations from UN, national human rights bodies, or an external evaluation, implementing a recognised model, etc.), and to the principles for independent living.5 Use data where available, and please disaggregate by gender if possible. Please include data on number of persons with disabilities supported by the project and also number of persons who were included in the implementation (e.g. number of personal assistants, or number of persons providing support to persons with disabilities). (400 words)
2.11. Stakeholders: which of these stakeholders were involved in the development and implementation of the action (it is possible to mark more than one group of stakeholders)
☐ International organisation
☒ National/federal government
☐ Regional government
☒ Local/Municipal government
☐ National EU funds managing authority
☐ Regional EU funds managing authority
☐ Monitoring body of EU funds
☐ Implementing body of EU funds
☐ Public social service
☐ Not-for-profit social service
☒ Private service provider
☒ Disabled Persons Organisation
☐ Other, please specify:
2.12. Partnership and consultation: if relevant to the action, please describe how were persons with disabilities/organisations representing them involved or consulted in the design, implementation and/or monitoring/supervision of the intervention. (200 words)
2.13. Evaluation: was the practice evaluated?
☐ YES, internally
☒ YES, by a body/organisation not affiliated with its implementation
☐ NO, it was not evaluated
2.14. Outreach: How was the target group informed about, and/or offered, the new service or new practice? (it is possible to mark more than one reach out channel)
☒ Referrals through public social services
☒ Referrals through NGOs
☒ Referrals through private service providers
☐ Broadcast media (television or radio)
☒ Printed media (newspapers and magazines)
☐ Social media (Twitter, Facebook, Linked-in, Instagram, Snapchat, WhatsApp)
☒ Website or E-mail
☒ Conferences with stakeholders
☐ Other (please add)
2.15. Awareness raising campaigns: which channels were used to raise awareness and communicate on the new service/practice to the general public and relevant public authorities?
☐ Television
☐ Radio
☒ Newspapers and magazines
☐ Billboards o Brochures/leaflets/items
☐ Social media (Twitter, Facebook, Linked-in, Instagram, Snapchat, WhatsApp)
☒ Website o E-mail
☒ Meetings/conferences with experts/colleagues/stakeholders
☒ Guidelines from authorities to local social services
☐ Scientific publications
☐ Other (please add)
2.16. What quality standards and monitoring/control mechanisms are put in place, if any?