THE NEXT STEPS PROJECT

Alison Harnett on new initiatives to provide individual supports for people with disabilities.

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What is the Next Steps Project?

The Next Steps Project is a community of learning facilitating the movement to a more individual approach to supporting people. It is working with people themselves, their families and service providers to support people with intellectual disabilities in Ireland to achieve greater independence and full active citizenship.

Twenty-three member organisations of the National Federation of Voluntary Bodies Providing Services to People with Intellectual Disabilities are currently engaged in the Next Steps Project. The project is focused on implementing initiatives to progress the change towards more individualised supports, providing better outcomes for the funding invested in disability services. The participating organisations come from all four HSE regions in the country; provide services to over 12,000 people with intellectual disabilities and have approximately 8000 staff members.

The organisations involved in the Next Steps Project have created a Community of Learning. In order to move forward with real change on the ground we have adopted a case-study approach for the Next Steps Project. Each organisation is progressing one or more case studies that are working on the ground with people; their families; and staff members, to move towards more individual supports. The aim of using this method is to capture changes in the way we deliver supports through changes in the participating organisations and in individuals’ lives. This provides opportunities for shared learning through action. The captured information reflects the diversity of the organisations involved, the themes of the various cases (e.g. moving into independent living or forging meaningful connections in community life), and the diverse experiences of the different stakeholders involved.

These are not time-limited pilot projects—rather they highlight new ways to provide supports focused on individuals. Information is gathered by the case studies every two months and shared amongst the community. Supports are identified and challenges are highlighted. As a group, the Next Steps Project then works proactively to identify solutions to the challenges presented.

How the Next Steps Project works

A Steering Committee (with members from the HSE, the Department of Health, NDA, people using services, families, staff and service provider organisations) guides the work of the project, and representatives from each participating organisation, together with representatives who use services, meets every two months. In all of our activities a key value is the participation of people in the decisions that affect their lives.

The context for the Next Steps Project

The move towards individualised supports is fully in line with current national disability policies and strategies, including the Value for Money and Policy Review of Disability Services; Time to Move on from Congregated Settings, the New Directions Review of Adult Day Services and the National Housing Strategy for People with a Disability 2011-2016. A short summary of the goals of each of these policies is provided on the Next Steps project website at http://www.fedvol.ie/Next_Steps_Project/Default.1644.html. When developing the work that takes place in the case studies, the participants explicitly link to the goals of the above policies and detail how they will meet them as they progress. All of these policies, along with the UN Convention on the Rights of People with Disabilities point to the need for a fundamental reshaping of service provision towards individualised supports.

At the same time, services are experiencing significant funding challenges that require innovative and creative solutions in order to provide supports in new ways that enhance quality whilst meeting with funding requirements. The increased focus on the implementation of the Value for Money and Disability Policy Review and the recent introduction of the HIQA inspections of disability services are other key elements shaping the context in which this work takes place.

The move towards individual supports provides exciting opportunities for people with disabilities, their families and the organisations and staff who support them. Significant change also brings challenges, and meeting these challenges requires capacity building and strengthened cohesion amongst our membership at national, regional and local levels. The activities of the National Federation of Voluntary Bodies are focused on meeting these challenges. Our main priority is to provide support and leadership to our members in the management and delivery of change.

The Next Steps Project is one of the key responses developed by the National Federation of Voluntary Bodies in providing leadership and innovation to meet with the challenges in achieving the new vision, along with initiatives from the Immersion Project and the Enabling Excellence training programme. Driven by the pursuit of better life outcomes for supported individuals and the requirements of government policy in Ireland, many organisations have been actively seeking to enhance the capacity of their personnel to promote high-quality individualised supports. Particular interest has been focused on harnessing the potential of methods derived from the ‘Social Role Valorisation’ (SRV) approach of Wolf Wolfensberger to help individuals to achieve ‘Supported Self-Directed Living’ (SSDL).

Since 2011, Genio has worked with Hope Leet Dittmeier, a leading international SRV practitioner, to develop quality training in this area. The Genio Endeavour for Excellence programme is now a recognised benchmark for practice development in Ireland. In April 2013, Hope joined other international and national experts in the Immersion Transformation conference that was organised by the National Federation of Voluntary Bodies with Genio’s support. This conference proved highly transformational for many of those involved and it led to a significant increase in the demand for training. Genio and the National Federation have worked together to make training more widely available. The result of this collaboration is the ‘Enabling Excellence’ training programme which incorporates many of the key elements of ‘Endeavour for Excellence’. The training will be conducted in Dublin and Limerick from November 2013 to July 2014.

What is being achieved through the Next Steps Process?

Through a significant consultation process at the beginning of the project we agreed a vision for ‘individualised supports for an ordinary life’, based on the definition of individualised supports in the Disability Policy Review (2011):
■ Determined by the person (in collaboration with their family/advocate as required and in consultation with an independent assessor) not the service provider or other ‘experts’;

■ Directed by the person (with their family/advocate as required);

■ Provided on a one-to-one basis to the person and not in group settings (unless that is the specific choice of the person and a ‘natural’ group activity, such as a team sport);

■ Flexible and responsive, adapting to the person’s changing needs and wishes;

■ Encompassing a wide range of sources and types of support so that very specific needs and wishes can be met;

■ Not limited by what a single service provider can provide;

■ Having a high degree of specificity. Provision that is expressed in terms of residential, day or respite does not capture the specific nature of an individual’s support needs.

During the consultation process we identified seven key areas necessary to progress the movement towards individualised supports:
■ Staff and management development

■ Sharing evidence of change in people’s lives

■ User involvement in decision making and advocacy

■ Engagement in partnership and HR issues

■ Reconfiguration of services and individualised budgets

■ Family leadership and involvement

■ Mainstream and community involvement.

What has been achieved so far?

The types of change involved range from individuals moving from group settings into homes of their choosing in community settings, to the establishment of new kinds of individualised day supports, and specific initiatives for supporting individuals to be involved in the recruitment of staff. At each meeting we have listened to individuals and they have shared this in detail, with participants having an opportunity to hear how changes are happening on the ground, discuss what is working and problem-solve together on any further challenges. We identify particular issues that may be relevant across the organisations, and where necessary have raised issues that require a national response with bodies such as with the HSE, Department of Health, the Department of Environment or the Housing Agency.

There have already been some significant outcomes from the Next Steps Project:
■ Individuals have moved out of congregated settings and group homes into individual residential supports in the community. Where this has happened the changes have been fundamental in people’s lives, building capacity; providing real choice and self-determination.

■ Confidence and independence of people who are accessing individual supports have hugely improved and increased.

■ People have developed new skills that support independent living and community participation.

■ People have more visits from friends and family as they live more independently and have their own space—family connections are being rebuilt.

■ People using services have become involved in the staff interviewing process.

■ There have been increased opportunities for community participation.

■ Overnight staff are no longer needed in some of the case studies, with alarms provided for back-up support.

■ Individuals have taken their first trips abroad.

■ Bank accounts have been successfully set up, following the navigation of complex and challenging processes.

■ New day supports have been designed, focused on the interests of individuals and using the existing community activities and supports available locally, rather than being provided directly by the organisation – staff roles have adapted to community mapping and linking.

■ Community spaces are being used rather than a centre-based day services; people have the opportunity to stay in their local community rather than travelling by bus to a centre.

■ Staff members have welcomed working in new individualised roles

■ We have developed an online Assistive Technology hub bringing together information on available technologies that can support the movement to independent living and can provide safeguards, peace of mind, and a lever for change. The password-protected online forum also allows members to share information, ask questions of their peers and build on the community of learning. We have gathered information from Assistive Technology suppliers and facilitated visits to a demonstration house with assistive technology.

■ We have had significant interaction with the Housing Agency in relation to the implementation of the Housing Strategy for People with a Disability 2011-2016. Individuals supported by the case studies are working directly with the support of the Housing Agency as the process for housing assessments is piloted.

■ We have supported the provision of easy-to-read information, including working with the Department of the Environment and Inclusion Ireland to create an easy-to-read version of the Housing Strategy for People with a Disability 2011-2016.

■ We have a focus on family engagement and the empowerment of families throughout the move to individualised supports. A repository of family stories is being developed that demonstrate the challenges that have been overcome.

Some plans for the future

We will be continuing our work in 2014 with the Next Steps participants. Some of the participating organisations have begun organisation-wide changes based on their learning from on the project. A dissemination event of the learning from 2012 on the Next Steps Project was held in January 2013, attended by over 200 delegates—self-advocates, family members, staff, government departments and the HSE. Minister Kathleen Lynch attended the event and indicated her support for the work being undertaken. A similar event will take place in early 2014. Details will be posted on the National Federation of Voluntary Bodies website at www.fedvol.ie.

Alison HarnettAlison Harnett (alison.harnett@fedvol.ie) has worked with the National Federation of Voluntary Bodies since 2004. She is currently the project coordinator for the Next Steps and Informing Families projects. Alison qualified with a B.Sc in Communications from Dublin Institute of Technology and is currently studying for a PhD by research at the School of Psychology in University College Dublin.

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