Red Todos Somos Todas 21/01/2026. Diseño plan acción | Plena inclusión

Introduction and Meeting Purpose

Opening Remarks

• Thanked participants for joining the meeting, expressing excitement to start the year early compared to last year's delay.

• Discussed whether to have an initial group chat or present information first, indicating a desire for dynamic interaction.

Meeting Context

• Mentioned the informal nature of the meeting, likening it to a coffee gathering to energize participants.

• Introduced the main agenda: discussing proposals for activities in 2026 and inviting feedback from attendees.

Review of Previous Year’s Activities

Recap of Last Year's Initiatives

• Noted that some attendees were present at a previous meeting in Madrid; aimed to update everyone on past actions and future plans.

• Highlighted efforts made last year to update the "Todos somos todas" study with INICO, focusing on individuals with significant support needs.

Data Analysis Insights

• INICO is analyzing data related to disability support needs; preliminary findings suggest a slight increase in numbers over ten years but not significantly so.

• Emphasized inclusion of participation from people with disabilities and families in this year's study, which was absent previously. Discussions held during a face-to-face meeting helped gather insights on daily challenges faced by these individuals.

Current Study Findings and Future Directions

Family Interviews and Perspectives

• Conducted interviews with families during the Madrid meeting; noted that their perspectives might be overly optimistic due to demographic factors (mostly young families).

• Acknowledged need for more diverse interviews reflecting realistic experiences, especially those facing greater challenges. The goal is to create an informative report combining data analysis with personal narratives through video interviews.

Report Objectives

• The report aims not only to present data but also highlight progress made over the past decade while addressing ongoing challenges within the community. It seeks balance between acknowledging advancements and recognizing areas needing improvement.

Proposed Work Plan for This Year

Key Focus Areas

• Introduced three main focus areas based on discussions from November's meeting: improving family access to information about available resources, ensuring no one misses out due to lack of communication or resource awareness.

Year of Families: Focus on Education and Support

Introduction to the Year of Families

• The discussion introduces the upcoming "Year of Families," emphasizing a focus on family needs and education.

• Bea and María Ángeles, members of the family network, are mentioned as key contributors to this initiative.

Key Themes and Initiatives

• The slogan for the year is centered around "families by right" or "attention to families," highlighting their rights and support needs.

• Planned initiatives include research on family needs and tools for families in vulnerable situations, discussed previously in a commission meeting.

Development of AI Tools for Family Support

• An artificial intelligence tool is being developed to assist families with navigating bureaucratic processes like guardianship or subsidies.

• This AI will utilize verified information from reliable sources such as official documents from federations and government ministries.

Implementation Timeline and Functionality

• The initial phase involves reviewing documentation, with hopes that the tool will be functional by September.

• The AI aims to help identify outdated documents used by families or professionals, ensuring they have access to current information.

Community Involvement and Resources

• There is an invitation for community members to participate in testing the AI tool once it’s ready.

• A dedicated section on their website has been created for families, consolidating various resources that can aid them.

Monthly Information Distribution Plan

• Plans are underway to send monthly infographics containing useful resources (videos, documents, etc.) tailored for families who sign up.

• Topics have been outlined for each month starting January, aiming to provide relevant information consistently.

Information Sharing for Families with Disabilities

Overview of Proposed Information Topics

• The discussion revolves around sending information to interested parties regarding initiatives aimed at promoting participation of families and individuals with intellectual disabilities in associative movements.

• Key topics include positive behavioral support, active support, and methodologies tailored for individuals requiring significant assistance, particularly concerning behavioral issues.

• Future discussions are planned on vital interpretation for families with communication difficulties, family well-being resources, and strategies to enhance family dynamics.

• In June, the focus will shift to reconciliation during summer camp applications; this is crucial as it aligns with the timing when families need such information.

• Additional themes include emotional well-being in October and communication support in November, aiming to minimize restrictions on participation opportunities for those needing more assistance.

Feedback and Adjustments from Participants

• Participants are encouraged to provide feedback on proposed topics; initial reactions indicate a positive reception towards the idea of sharing these resources.

• A suggestion was made that school-related topics might be more relevant earlier in the year (January-February), especially concerning application deadlines for educational changes.

• The importance of timely information regarding family reconciliation was emphasized; adjustments may be necessary based on practical timelines for camp applications.

Methodologies and Collaboration Opportunities

• There is a proposal to move school-related discussions to March based on participant input about optimal timing for educational transitions.

• Clarification sought regarding specific methodologies mentioned; emphasis placed on concrete support methods like positive behavioral support that can aid both home life and community engagement.

• The group aims to gather insights from participants who can act as "contrast families" or professionals by reviewing shared documents before dissemination each month.

Next Steps and Participation Invitation

• Participants will receive a form allowing them to sign up for updates or contribute their own useful resources related to discussed topics.

• The initiative seeks collaborative efforts where participants can suggest additional materials or highlight outdated content that needs revision before distribution.

This structured approach aims not only at enhancing resource sharing but also at fostering community involvement among families dealing with disabilities.

How to Connect Families with Monthly Information

Communication Strategies for Family Engagement

• A participant inquires about how families can receive monthly information, suggesting a need for effective communication methods.

• The team plans to send links via WhatsApp and email groups, encouraging families to provide their contact information for inclusion in a CRM system.

Flexibility in Topic Coverage

• Discussion on including leisure activities for individuals with high support needs, highlighting the importance of diverse topics.

• Emphasis on flexibility regarding topic control; participants can opt out if they are less familiar with certain subjects.

Future Topics of Interest

• Two additional topics suggested: future planning and aging, indicating gaps in current discussions that could enhance the program's relevance.

• Mention of integrating future-related content into emotional well-being discussions, showcasing adaptability in topic coverage.

Incorporating New Participants and Planning Events

Welcoming New Members

• A new member joins the discussion late but is welcomed warmly by others, emphasizing community spirit.

Overview of Work Plans

• The group discusses the annual work plan and outlines initial tasks while inviting input from all members.

Outreach Efforts

• Plans to reach out to families already registered on the website to ensure they receive relevant updates and information.

Advocacy and Community Visibility

Importance of Advocacy

• The group reflects on past concerns about raising awareness regarding individuals with high support needs within the community.

Celebratory Seminar Announcement

• A seminar is planned for June 16th to celebrate ten years since a significant strategy was approved, aiming to highlight personal stories and achievements.

Legislative Engagement

• Ongoing efforts discussed regarding advocacy at legislative levels, ensuring that policies consider the needs of individuals requiring substantial support.

Updates on Research and Legislation

Study Publication Plans

• An update will be provided once a study related to community needs is published; strategies will be developed for widespread dissemination.

Legislative Contributions

• Discussion includes contributions towards new legislation aimed at improving processes related to dependency assessments for individuals facing sudden health challenges.

Discussion on Support Needs and Legislative Recognition

Overview of Legislative Implications for Individuals with High Support Needs

• The speaker discusses the alignment between the experiences of individuals with high support needs and those recognized under specific legislation, emphasizing the need for similar recognition.

• There is a call to extend benefits outlined in the law for individuals with certain disabilities to others who also require significant daily support, advocating for equitable treatment.

• The financial assistance provided to individuals recognized as dependent is notably higher, reflecting their greater need for support; quicker processing times are also highlighted due to rapid deterioration in health conditions.

• The speaker illustrates how these legislative considerations aim to address the urgent needs of older adults or those with substantial support requirements, showcasing ongoing advocacy efforts.

• Plans are mentioned regarding publishing a study related to these issues, indicating an intention to engage stakeholders through future presentations.

Work Plan Proposal for 2026

• A work plan is proposed that encompasses various areas of focus; participants will be invited to express interest in specific lines of work via a shared form.

• Emphasis is placed on forming small working groups based on participant interests, facilitating easier collaboration and information sharing among members.

Development of Guidelines on Restrictive Practices

• Discussion shifts towards creating guidelines aimed at reducing restrictive practices within organizations, stemming from previous pilot projects focused on this issue.

• The structure and necessary protocols for these guidelines are being developed collaboratively, inviting feedback from team members involved in the network.

Key Protocol Elements Under Consideration

• Initial discussions highlight the importance of informed consent within protocols designed for individuals receiving care; ensuring they have access to relevant information is crucial.

• Proposed elements include recommendations regarding pharmacological restraints and physical restraints, aiming to establish clear guidelines that prioritize individual rights and safety.

Personalization and Regulatory Compliance

• There’s an emphasis on personalizing interventions despite having overarching protocols; each individual's unique needs must be considered during implementation.

• Ongoing analysis and documentation of intervention usage are deemed essential for refining practices over time while ensuring compliance with existing regulations at both state and community levels.

Discussion on Protocol Development

Proposal for Document Construction

• The speaker discusses the need to evaluate whether to include specific norms from Castilla y León and Comunidad de Madrid in a proposed document. They seek feedback on the proposal's relevance to participants' needs.

Volunteer Participation

• A call for volunteers is made to review the document and suggest improvements, with Laura offering her assistance. Another participant expresses interest in contributing if given some time. The speaker emphasizes that the document is still under development, aiming to alleviate pressure on others involved.

Addressing Needs and Gaps

• Questions are raised about whether the current outline meets all necessary requirements or if additional protocols are needed. There’s an acknowledgment of missing input from Isabel regarding developments in Andalucía, where a protocol has already been established by the Junta de Andalucía.

Existing Protocols in Other Regions

• The conversation highlights existing protocols in various autonomous communities, noting significant disparities across regions regarding medical authorization for certain practices (e.g., use of cinchas). This revelation surprises participants who assumed such measures were standard throughout Spain.

Collaboration Across Communities

• Participants discuss leveraging knowledge from colleagues across different regions (e.g., Ceuta, Extremadura) to gather information about existing regulations and practices within their respective communities, emphasizing collaboration and shared learning among members of the network.

Program Development for Aging Support

Invitation to Participate

• An invitation is extended for participation in a program aimed at enhancing services for older adults, particularly those over 45 years old, focusing on transforming centers that cater to aging populations. Details will be shared via chat for further engagement.

Focus Areas of Transformation

• The program aims to address two main areas: transformation of occupational centers and support during end-of-life stages for individuals with intellectual disabilities or severe health deterioration. Previous pilot projects have informed this focus area.

Expert Involvement

• Two experienced professionals will guide sessions designed around critical themes related to supporting individuals nearing end-of-life situations, ensuring comprehensive coverage of essential topics throughout the year leading up to discussions on grief management by year-end.

Discussion on Community Engagement and Training

Overview of the Initiative

• The initiative aims to involve both families and organizations in training sessions related to specific topics, with experts Cristina and Migella leading the discussions.

• Participation is open to families not affiliated with any organization, allowing a broader community engagement. Organizations can also join for training or case support.

Accessibility of Information

• The program encourages sharing information about the initiative with those who may benefit, even if they are not part of an association. This includes individuals facing challenges in care settings.

• There has been significant interest from families regarding the availability of recorded sessions, indicating a demand for structured resources on these topics.

Structure of Sessions

• Each session will consist of a presentation followed by an interactive Q&A segment where participants can share specific cases and ask questions directly to the expert speakers like Ana Carratalá.

• The goal is to compile key insights from each session into a shared document that highlights essential recommendations and expert contacts for future reference.

Collaboration with Local Organizations

• The initiative will collaborate with local organizations such as Los Camilos, which specializes in end-of-life support, aiming to create accessible tools for families seeking guidance on these sensitive issues.

• There is excitement surrounding this project due to its long-discussed nature within the community, emphasizing its relevance despite being perceived as an invisible issue affecting many people.

Upcoming Educational Sessions

Learning Opportunities

• An "Escuela de Aprendizaje" (Learning School) will be held this year focusing on various topics requested by professionals and families alike, particularly concerning behavioral support needs.

Specific Topics Scheduled:

1. SBA Tool Introduction: In June, there will be a session introducing a tool designed to assist individuals with significant behavioral support needs through better understanding their challenges.

2. Low Activation Strategies: In October, experts will discuss strategies for managing low activation states in individuals experiencing anxiety or challenging behaviors during stressful situations.

3. Trauma Support: A December session will focus on trauma impacts on individuals with disabilities and how best to provide supportive interventions tailored to their experiences and needs.

Discussion on Upcoming Events and Feedback

Introduction to Upcoming Topics

• Tono expresses excitement about upcoming discussions, indicating that while the exact date is not set, they are planning events for a specific month.

• Participants are encouraged to share information about these topics with others who may be interested, fostering community engagement.

Importance of Feedback

• Positive feedback is emphasized as crucial in APAD, highlighting the need for participants to retain information shared during meetings.

• The speaker acknowledges their role in motivating others and emphasizes the importance of reminders regarding discussed topics.

Gathering Interests

• Attendees are invited to express their interests through a form, ensuring that relevant topics are revisited and discussed further.

Suggestions for Additional Topics

• Clara suggests including residential services and personal assistance options in future discussions, noting that these areas lack representation in current plans.

Creating Inclusive Perspectives

Expanding Visions for Future Services

• The discussion highlights the necessity of developing diverse perspectives on future housing needs for families with members requiring support.

• Emphasis is placed on creating inclusive community experiences rather than solely focusing on traditional residential care models.

Sharing Life Stories

• There’s a call to include narratives from individuals living independently or within supportive communities to broaden understanding and visibility of different lifestyles.

Engagement with New Participants

Welcoming New Members

• A new participant expresses regret over missing part of the meeting but shows interest in staying connected with ongoing activities related to learning and trauma support.

Information Sharing Protocol

• Assurance is given that meeting recordings will be shared along with an activity calendar once finalized, promoting transparency and inclusion.

Focus on Life Stories in Future Seminars

Planning Future Discussions

• Cristina seeks clarification on how life stories will be integrated into upcoming seminars aimed at supporting individuals with significant needs.

• The group discusses organizing a seminar focused on sharing life stories as part of celebrating ten years since launching an important strategy aimed at supporting families.

Discussion on Support for Individuals in Group Homes

Personal Assistance and Community Living

• The speaker raises questions about the functioning of personal assistants for individuals living in supported housing, specifically regarding funding and resources available for 24/7 assistance.

• Acknowledgment that there is no clear answer to the availability of 24-hour personal assistants; however, examples from other locations are sought to understand better how such systems operate.

• Discussion on the interest in community living arrangements, highlighting a need for more information on how these setups can be structured effectively.

Concerns About Staffing and Support Quality

• A participant expresses concerns about unequal focus within support groups, emphasizing that some individuals with greater needs may not receive adequate attention.

• Reference to a study by Plena Inclusión regarding employment concerns among people with intellectual disabilities; questioning how those with significant support needs were included in this research.

Employment vs. Continuity of Care

• The speaker questions whether employment is truly the primary concern for individuals needing extensive support or if it’s more about consistent care from experienced staff.

• Emphasis on the trauma caused by frequent changes in caregivers, which disrupt continuity and quality of care for individuals with high support needs.

Systemic Issues Affecting Care Quality

• Inquiry into studies addressing caregiver retention rates and their impact on service quality; highlights the importance of stable staffing in providing effective support.

• Discussion around the necessity of having dedicated professionals who are passionate about their work to ensure quality care delivery.

Financial Constraints Impacting Care Services

• The speaker argues that many studies fail to recognize that employment might not be the main concern for those requiring substantial assistance; instead, they highlight issues related to caregiver turnover.

• Acknowledgment that financial constraints significantly affect staffing stability within social services, leading to inadequate care experiences due to high turnover rates among direct support professionals.

Perspectives from Various Stakeholders

• A participant shares their dual perspective as both a professional and an advocate, stressing that systemic issues require multi-level solutions involving state and regional policies regarding funding and staffing stability.

• Recognition of low pay and lack of acknowledgment faced by social sector workers as critical barriers affecting service delivery quality across various organizations.

Discussion on Support Needs and Systemic Challenges

Variability in Support Needs

• The speaker acknowledges the diversity within support needs, agreeing with Carmen that while some individuals require significant assistance, many others have varying levels of autonomy.

• Out of 240,000 people discussed, approximately 70,000 have high support needs; however, the remaining population also requires attention due to their differing realities.

Funding and Policy Issues

• The speaker highlights systemic issues in funding across all autonomous communities, indicating a lack of adequate financial resources for support services.

• The reform of the dependency law is stalled due to disagreements among autonomous communities, which hampers access to necessary services for families and individuals.

Family Perspectives and Daily Concerns

• There is a disconnect between family experiences shared in discussions and broader organizational perspectives; families express daily concerns rather than abstract frustrations.

• Families feel their voices are often overlooked in policy discussions; they seek acknowledgment of their unique challenges related to high support needs.

Advocacy for Inclusion

• The speaker emphasizes the importance of including perspectives from those with high support needs in ethical discussions and decision-making processes.

• It is crucial to adapt surveys and questions to reflect the realities faced by individuals with different levels of need, ensuring their concerns are represented.

Political Engagement and Accountability

• The discussion touches on political advocacy as essential for addressing systemic issues; there’s a call for more active engagement beyond just voting.

• Acknowledgment that staffing issues stem from administrative failures rather than individual organizations; this points towards a need for accountability at higher levels.

Community Responsibility

• Participants agree that while entities play a significant role in providing care, ultimate responsibility lies with governmental bodies that dictate funding and policies.

• Emphasis on collective strength among families affected by these issues suggests potential for unified advocacy efforts across various sectors.

Discussion on Support Needs in Disability Services

Perspectives on Entity Responsibilities

• The speaker agrees with Carmen, emphasizing that the challenges faced by families and professionals often stem from systemic issues rather than the entities themselves.

• Another participant expresses strong agreement with Carmen's views, highlighting dissatisfaction with the current situation regarding support for individuals with disabilities.

Statistics on Individuals with Disabilities

• A statistic is shared indicating there are approximately 70,000 individuals with significant support needs out of a total of around 240,000 people with intellectual disabilities.

• Clarification is provided that this figure represents about 1% of the overall population, underscoring the prevalence of those requiring substantial assistance.

Challenges in Inclusion

• The speaker reflects on personal experiences where family members with high support needs are often absent from studies or meetings due to logistical challenges.

• There is a call for inclusivity within organizations to focus more on individuals who require greater support, acknowledging that all individuals deserve attention.

Advocacy and Resource Allocation

• The importance of advocacy within associations is stressed; entities must defend and represent their members effectively.

• Recent actions taken by Plena Inclusion include political engagement aimed at securing more resources for disability services.

Local vs. State-Level Advocacy

• An argument is made for local involvement in advocacy efforts, noting that different levels (state and local) have distinct responsibilities and capabilities in negotiating resources.

• It’s highlighted that effective advocacy requires collaboration across various levels—statewide negotiations versus local entity involvement—due to differing capacities among communities.

Complexity of Service Provision

• The discussion points out the complexity involved in service provision across different regions, as not all communities have equal negotiating power or resources available.

• Local administrations may lack sufficient competencies affecting service delivery directly related to disability support.

Discussion on Local and Autonomous Administration

Importance of Local Administration

• The local administration plays a crucial role in providing land for organizations to build their facilities, which is essential for the development of community associations.

• Many organizations rely on local government support to secure land, highlighting the importance of local administration in fostering community initiatives.

Challenges Faced by Organizations

• Participation in extracurricular activities for children often depends on local entities, indicating that local governance significantly impacts family engagement.

• There is a pressing need for more personnel in organizations catering to individuals with high support needs; this issue requires coordinated efforts among various administrative levels.

Addressing Personnel Shortages

• The speaker emphasizes the complexity of addressing personnel shortages within organizations and acknowledges ongoing efforts to tackle this challenge.

• Collaboration between different entities is necessary to find solutions that benefit all stakeholders involved in care services.

Financial Considerations and Advocacy

Salary Issues and Their Impact

• The discussion highlights how salary levels are linked to staff turnover rates, with current compensation being lower than other sectors, creating recruitment challenges.

• Recent campaigns have led to a modest increase (around 10%) in salaries, but there remains significant room for improvement.

Collective Action for Change

• Advocating for higher wages (up to 40% increases) is seen as essential not only for attracting talent but also for ensuring quality service delivery within the sector.

• A unified approach among organizations is necessary; dialogue and collective action can help address financial disparities affecting service quality.

The Need for Ongoing Advocacy

Community Mobilization Efforts

• Some autonomous communities have actively mobilized citizens over wage issues, demonstrating the power of grassroots advocacy in effecting change.

• Continuous efforts are required to maintain pressure on authorities regarding funding and resource allocation amidst rising costs impacting service providers.

Inclusivity in Project Development

• Emphasizing inclusivity ensures that all voices are heard during project planning; however, challenges remain regarding timely implementation of these principles.

• Acknowledgment of past oversights serves as motivation to improve future practices while maintaining focus on inclusive participation.

Discussion on Survey Relevance and Generational Challenges

Concerns About Survey Questions

• The speaker reflects on a survey question regarding public transport, highlighting its irrelevance to their sister who has never used a bus.

• They express frustration over the difficulty of answering surveys for individuals with disabilities, emphasizing the need for interpreters to facilitate accurate responses.

Importance of Listening and Support

• Acknowledgment of the importance of having supportive figures like Carmen and Cristina, who listen and show concern for those affected by these issues.

Economic Challenges and Generational Gaps

• Discussion shifts to economic challenges such as low salaries and inflation contributing to a lack of generational turnover in leadership roles within organizations.

• The speaker notes that younger families struggle to balance participation in organizations due to demanding lifestyles.

Workforce Stability Issues

• There is a significant turnover among direct care teams in various entities across Spain, attributed to poor pay and lack of career progression opportunities.

• Young professionals often leave social work roles due to financial instability, seeking better-paying jobs elsewhere.

Impact on Individuals with Disabilities

• The discussion highlights how young professionals are drawn into social work out of passion but must prioritize financial stability over vocation.

• Professionals like physiotherapists or speech therapists often leave their positions for more lucrative opportunities, impacting continuity of care for individuals with disabilities.

Emotional Toll on Families

• Families experience emotional distress when caregivers they rely on leave for better job prospects; this creates instability during critical developmental periods.

Reflection on Vocational Losses

• The loss of dedicated professionals is lamented; even though new staff may come in, it disrupts established relationships crucial for effective support.

Resilience Amidst Challenges

• Despite changes in caregivers, individuals with disabilities can adapt positively; the speaker shares an example where their sister adjusted well after losing her caregiver.

• Emphasizes the importance of resilience among families facing these transitions while recognizing the broader implications of lost vocational dedication.

Resilience and Community Support in Today's World

Importance of Resilience

• The discussion emphasizes the need for resilience in today's challenging environment, highlighting the importance of fighting for change.

• Participants are encouraged to express their interests through a form that will be sent out, indicating a collaborative approach to addressing community needs.

Upcoming Events and Key Dates

• A significant date mentioned is June 16th, which is set for a seminar aimed at raising awareness about various issues discussed during the meeting.

• The group reflects on the importance of acknowledging ongoing challenges and encourages positive contributions from all members.

Financial Challenges and Service Models

• Juan points out that while financial resources are necessary, there is also a critical need to reform the current service model, which he describes as inefficient.

• He advocates for innovation and creativity within existing frameworks to better utilize funds and provide personalized support services.

Advocacy for Personalized Services

• There is an emphasis on advocating for a more tailored service model that recognizes varying levels of support needed by individuals within the community.

• The conversation highlights how mobilizing community assets can lead to more effective support systems rather than relying solely on traditional funding models.

Research Initiatives and Future Directions

• An upcoming study by Plena Inclusión aims to compare family support policies across Europe, focusing on identifying effective strategies that could be implemented in Spain.

• This initiative seeks to enhance political advocacy efforts related to funding and support mechanisms for families with disabilities, although it acknowledges that results will take time.

Conclusion: Moving Forward Together

• The group expresses optimism about future work despite recognizing the challenges ahead. They commit to keeping each other informed about developments in policy changes and funding opportunities.