ILMI PAS NOW Campaign Update – July 2024
Since 2018, one of ILMI’s core strategic political objectives has been to build a national Personal Assistance Service (PAS) that would meet disabled people’s needs for self-determined lives with the supports we need to live in the community.
The consistent PAS NOW campaign, led locally and nationally by disabled people, has had considerable impact. Our five core campaign demands of define, standardise, invest, promote and legislate are all advancing.
We know that there are huge challenges still to ensure we do develop a national PAS system that would realise Article 19 of the UNCRPD (“the right to live independently in the community”) but this eBulletin special gives ILMI members and allies a sense of the direction in terms of policy and legislation, and will allow us over the second half of 2024 to reflect and re-energise as a Movement to further advance our collective aims for a real PAS system.
We feel that this reflection on the work of the PAS NOW campaign is timely, given the work currently being undertaken in the HSE and the Department of Children, Equality, Disability, Integration and Youth (DECDIY) and how ILMI’s PAS NOW campaign informed and continues to inform key policy discussions about building a real PAS system based on our core campaign demands.
We are not even close to where we want to be in terms of PAS in Ireland, but we can and should celebrate the impact our collective campaign has had and is having. We have moved from the last National Disability Inclusion Strategy 2017-2022 where PAS was not even mentioned once to where the new National Disability Strategy will have a significant focus on PAS.
We are not even close to where we want to be in terms of PAS in Ireland, but we can and should celebrate the impact our collective campaign has had and is having. We have moved from the last National Disability Inclusion Strategy 2017-2022 where PAS was not even mentioned once to where the new National Disability Strategy will have a significant focus on PAS.
There is a year-on-year commitment to add 800,000 extra hours per year in PAS to 2026 “to address shortfall in services and to support individuals with disabilities to live a fuller more independent life and participate in normal activities in the community, in line with UNCRPD Article 19”.
That is progress and we need to recognise that this seismic shift in policy focus and the committed investment in PAS named in the Action Plan for Disability Services is based on continued, collective demand for change to meet the needs of disabled people has come through ILMI as a DPO and our PAS NOW campaign.
There is much work to be done, but much to be learned from this campaign as we begin to explore how to make similar change in policies in relation to education, employment, health, transport and housing.
Recap on the ILMI PAS NOW Campaign
In the summer of 2018, as ILMI launched its Strategic Plan, workshops held with disabled people across the country to build a shared analysis of what needed to happen in relation to PAS. From those participative spaces (all in person), we developed our five key askes which became the #PASNOW Campaign
Personal Assistance Services Campaign
The Personal Assistance Service (PAS) is a tool that allows us to live independently. The PAS enables us to do all the tasks…
Download.pdf
Define
A universal accepted definition of the Personal Assistance Service, which places us at the centre of any service provided and is directed by us to meet our needs to live independent lives. The PAS is about providing us with the necessary supports, both inside and outside of our homes to enable us to live a life of choice, dignity and respect. The Personal Assistance Service needs to be separated from Home Help and Home Care with its own ring-fenced
Legislate
Introduce legislation to guarantee us the right to a Personal Assistant Service as per Article 19 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).
Invest
Increase the budget for Personal Assistant Services by €12.5 million annually to provide an additional 500,000 hours each year to enable us to lead real independent lives.
Standardise
Introduce a single standard assessment of need across all HSE CHO areas. This must include the provision and support for independent assessment of need as per the Disability Act 2005 and the creation of systems that allow for portability of services across CHO areas, meeting our social, personal and employment needs with no bureaucratic barriers.
Promote
Ensure that we are all made aware of the availability of the Personal Assistant Service in order that those who wish to lead to live their lives independently can access the necessary supports to do so.
Collective Empowerment in the PAS NOW Campaign
From the start of the PAS NOW campaign, it was vital that all actions (local and national) were led by disabled people. ILMI held political lobbying workshops across the country in autumn 2018 to build collective shared voice on how to campaign for a right to a PAS. These workshops gave disabled activists the confidence and shared language and analysis to ensure local and national discussions on PAS were being led by what disabled people wanted and needed.
In Spring 2019, we published our Leader Manual, which was a resource developed through consultations and general discussions with experts on PAS: Disabled People leading their PAS who are active within the Movement. This manual not only was a training resource to empower Disabled People to manage their service or begin exploring their service, it also explored ILMI definitions of the role of a PA.
ILMI Leader Manual
Independent Living is about having the freedom to have the same choices that everyoneelse has in life. Independent living is about choosing…
We worked with University of Galway Centre for Disability Law and Policy to publish a position paper on Legislating for a right to PAS, which was launched in the AV Room of the Oireachtas in Spring 2019).
Full Document:
Achieving a right to Personal Assistance in Ireland
As chair of Independent Living Movement Ireland (ILMI), I would like to thank the Centre for Disability Law and Policy at NUI Galway…
In the summer of 2019, ILMI worked with the Public Interest Litigation Association (PILA) and Eversheds Sutherlands to develop a legislative framework for a right to Personal Assistance. From this we developed a Private Members Bill (PMB) with Thomas Pringle TD. Due to changes in Dáil Standing orders (in this case standing order 179) we were unable to bring a PMB to the Dáil (Link to read ILMI eBulletin November 22nd 2019) and instead brought a motion which was carried in the Dáíl in November 2019 to create a Commissioner for PAS.
In advance of this vote, ILMI worked with members to ensure that TDs from across the political spectrum were supportive of the call for a right to PAS and to attend the debate and vote in large numbers. We also began to work with equality and human rights organisations to build their support as allies, to lobby in the run up to the debate in the Dáil. From this point onwards, key equality bodies such as the European Anti-Poverty Network and others continually referenced the need to invest in and legislate for a right to Personal Assistance as a mark of solidarity with Disabled People, but also a recognition of the intersection of Disability Rights with the struggle to realise equality for all in Ireland.
From November 2019, ILMI worked with members to ensure that each Local Authority would pass a motion supporting the right to Personal Assistance. This ensured that Disabled People leading campaign were leading the campaign and led to huge coverage in local papers on #PASNOW.
PAS NOW during the Pandemic
The general election in 2020 once again provided an opportunity for ILMI and our members and allies to bring the issue of the PAS NOW campaign to the fore. Pre-election hustings held around the country and the development of an ILMI manifesto and submissions and meetings with politicians continue to raise the need for a right to PAS in early 2020.
ILMI Election Manifesto 2020
Independent Living Movement Ireland (ILMI) is a campaigning, national representative organisation that promotes the philosophy of independent living and seeks to build…
Download.pdf
The impact of Covid and the post-election restructuring (with the creation of a new Department of Children, Equality, Disability, Integration and Youth) meant that discussions on right to PAS slowed somewhat. However, with continued mobilisation of disabled people, there were increased levels of reporting on PAS in HSE / Department policy spaces which again showed policy makers how important PAS was to their lives.
ILMI created vibrant online spaces during 2020 and 2021 that focussed on peer support and collective empowerment, including peer spaces for disabled people using the PAS. It also allowed ILMI to strategise on how to advance the PAS NOW campaign, including ensuring all local authorities engaged on debates on the right to Personal Assistance.
After a series of ten online facilitated sessions with disabled people, ILMI published its Observations on Ireland’s First draft report to the UNCRPD, noting that the “initial State report reflects this with a single reference to PAS yet it is central to achieving independence for so many disabled people on a cross-impairment basis”. Members reiterated key demands from the ILMI PAS NOW campaign including the need to develop a “national approach needs to be implemented in relation to the provision of supports and services to enable disabled people to live independent lives. The lack of a standardised approach and a “postcode lottery” causes huge barriers to real independence”
Observations State Report – April 2021
Observations on Ireland’s first draft report to the UN under the Convention on the Rights of Persons with Disabilities…
We also submitted our views on the development of the Personalised Budgets project which is linked to the provision of PAS for many disabled people. Link to read ILMI Position Paper on the progress of Personalised Budgets Demonstration Models – PDF Version
The publication of the Ombudsman Report “Wasted Lives” (Linked to read Wasted Lives 2021 – PDF Version) again highlighted the for the need for a resourced national PAS system to ensure disabled people are not institutionalised in nursing homes.
The Department of Health Disability Capacity Review (July 2021) acknowledged “huge unmet” need for PAS. The data in this report highlighted the failure to invest in new hours from 2008-2018 and that the majority of disabled people in receipt of service receiving less than 10 hours per week – Link to read ILMI Disability Capacity Review July 2021 – PDF Version.
2022: 30 Years of Independent Living and 30 Days of Action
At the end of 2021, ILMI board, staff and members recognised that the 30th Anniversary of Independent Living would be marked in 2022 and that it represented an opportunity to bring back PAS to the forefront of discussions around disabled people’s rights.
We began 2022 by continuing our peer support and mentoring for disabled people seeking to access and manage their PAS. We launched a document to give guidance to disabled people on how to access a PAS, and to empower them to control their own Assessment of Need (AON) to get the supports they need through our Pathways to PAS document.
A Personal Assistance Service (PAS) is for any disabled person who feels that they need support to do the things that they want to do, inside and outside the home…
Download.pdf
Over the course of April 2022, ILMI launched the “30 days of action” with members creating their own videos calling on the need to recognise and resource PAS as a political priority. These videos can be accessed here – Link to ILMI Video Resources and the overall PAS 30 days of action video can be accessed here: Watch ILMI PAS NOW – Youtube Video
The 30 days of action culminated in a huge webinar on 5th May 2022 to celebrate European Day of Independent Living, featuring disabled activists and a commitment from Minister Anne Rabbite: Watch ILMI PAS NOW Webinar – Youtube Video
The webinar on the 5th May also was a point to celebrate that every single local authority had passed motions with support of ILMI members supporting the right of Disabled People to access a Personal Assistance Service.
ILMI followed this up with an in-person delegation in Oireachtas AV room October 2022 to reiterate our call for the development of a PAS system on the PAS NOW five asks and for continued political support to build a national PAS system to meet disabled people’s needs. We concluded our 30th Anniversary of Independent Living in Ireland with a series of webinars on Independent Living, including one from Adolf Ratzka: Watch ILMI interview with Adolf Ratzka – Youtube Video
ILMI Video Resources
You can access all ILMI Video Resources on their website here.
Watch Videos
In December 2022, the ESRI published “Personal assistance services in Ireland: a capability approach to understanding the lived experience of disabled people” (Link to read publication – PDF Version) which many ILMI members participated in.
The ESRI paper recognised the need for increased hours which would “require a substantial increase in funding” and that “the current level of expenditure on PA is a small fraction of the state’s spending on disability services”
Similar to the PAS NOW campaign, the ESRI research noted “there is space for other potential reforms such as standardising how PA is allocated across the country and drawing up best practice guidelines for putting service users in charge of their own PA. This study also suggests that a necessary step towards improving the PA system is improving the conditions for PAs. Significant developments in Irish PA are planned over the next few years to meet growing demand, improve quality assurance and place PA supports on a statutory footing.”
RTE News Website
Lack of help hours confining those with disabilities – ESRI
See ILMI’s Claire Kenny and Dr James Casey as part of an RTE One News item on the ESRI report
Watch Video
Policy Development in 2023 and 2024: ILMI at the table to drive systems change
In Budget 2024, there was a commitment to additional 2 million increase to the PAS budget which meant that there was a year-on-year increase in PAS budget since 2019. This was attributed this to ongoing sustained campaigning at political level by ILMI members locally and nationally.
ILMI members had recognised that even with increased funding, there was a huge issue in terms of staffing the roles of PAs. ILMI developed a submission to HSE on recruitment and retention of PAs January 2023 based on those consultations.
In March 2023, ILMI made a presentation to Oireachtas Disability Matters in 2023 on unmet need of PAS: Link to read ILMI Opening statement to the Disability Matters Committe on Inadequate Personal Assistance Support – PDF Version
During that input, ILMI again reiterated the need for a national PAS system based on our PAS NOW campaign asks:
“ILMI has been running a campaign for investing and creating a system of Personal Assistance that meets the needs of disabled people called PAS NOW. Our campaign has been about five actions that are required to address the deficiencies that has been slowly, but persistently, occurring within the PAS. To do this, we need to have an agreed definition of the PAS, which places us at the centre of any service provided and is directed by us to meet our needs to live independent lives, separated from Home Help and Home Care with its own ring-fenced budget.
We need to standardise how need for PAS is assessed and ensure that there are no barriers to disabled people moving from one area to another for work, education or social reasons.
We need to see year on year budgetary increase in the budget for PAS, which can be achieved from redirecting funds from services that do not support the inclusion of disabled people in society.
We need PAS to be promoted so that disabled people who could benefit from support are aware that it is available.
And we need to introduce legislation to guarantee us the right to a Personal Assistance Service as per Article 19 of the UN Convention on the Rights of Persons with Disabilities (UNCRPD).”
You can watch this debate on Oireachtas TV here: Inadequate Personal Assistance Supports – www.oireachtas.ie
Watch Video
At this Joint Oireachtas Committe on Disability Matters, the HSE committed to developing working groups to develop a clear national definition of PAS and following that a clear standardised assessment of need.
Later that month, the ESRI published their second research paper on PAS called ‘Personal assistance services for disabled people in Ireland: “they meet the criteria for supports but we don’t have the resources to provide the services”’ (Link to read Personal assistance services for disabled people in Ireland – PDF Version) which not only highlighted the systemic gaps but also how cost effective PAS was as a service from the HSE perspective.
In 2023, we published our research “Not in the driving seat: reliance on family for supports and the impact it has on the lives of Disabled People”. This report focused on the lived experience of many disabled people who get no PA hours or struggle with meagre hours which do not allow one to live independently. The report was based on the fact that “many disabled people are forced to rely on family members for supports to do the things that can’t be done by ourselves. There is ample research on the stressful impact on disabled people and family members who provide support to disabled people. Typically, we hear of the “burden of care” we have become but never do we hear of the voices of disabled family members who, due to the absence of PA hours, are forced to rely on members of the family for support. We never hear of the impact on their lives and their relationships with family members, the compromises they have to make and how they are denied opportunities to do what they want, the unprinted burden of the “cared for one”.
This research shows that real investment into a national PA service can liberate disabled people and transform family dynamics for the better for many families.
Not in the Driving Seat
Reliance on family for supports and the impact it has on the lives of disabled people…
In the summer of 2023, the HSE created a working group in response to Wasted Lives. ILMI is represented on this working group and created a space for members to engage directly on how important PAS was to their lives and how vital it would be to ensure disabled people inappropriately placed in nursing homes could return to their own homes to participate in their communities.
In the summer of 2023, the HSE created a working group to define the role of a PA and ILMI was invited to participate in this working group and from the outset used the work we have developed over the last years to present a strong definition of a PA based on the philosophy of independent living and a life based on self-determination and participation in society. Also represented in this working group are HSE, the National Disability Authority (NDA), DECDIY officials and service providers. There has been some push back on the ILMI definition from service providers who feel it will be challenging for some services, who have often conflated the role of PA and home help in the past. ILMI have remained strong to our mandate based on 30 years of Independent Living in Ireland and have also pushed strongly for a lived experience subgroup to inform final stages on delivering a working definition. ILMI again insisted that “lived experience” only refers to disabled people who actually use a Personal Assistance and not to include service providers or family members.
In December 2023, the Department of Children, Equality, Disability, Integration and Youth published the Action Plan for Disability Services 2024 – 2026: (Link to read PDF Version)
Significant policy commitments relating to PAS are made in the action plan, including ais to “deliver additional hours, (800,000 extra hours a year by 2026), to address shortfall in services and to support individuals with disabilities to live a fuller more independent life and participate in normal activities in the community, in line with UNCRPD Article 19”.
In conjunction with the HSE working group on defining the PAS, DECDIY committed to “conduct a policy review of PA services in the light of the UNCRPD, with a working group involving key stakeholders and disabled people’s organisations, to develop formal policy and service description, develop eligibility and prioritisation criteria, and consider best form of governance and regulation”. This review is to be completed in 2024.
The Disability Action plan notes that under Article 19 PAS is “necessary to support living and inclusion in the community, and to prevent isolation or segregation from the community. Provision of personal assistance is a key measure to support people with disabilities to engage on an equal basis with others in the community, including participation in education and employment.
Through the Action Plan consultation process, we heard about the need for more personal assistance services, to support people with disabilities to live full lives of their choosing. This was also voiced through the consultation processes for the UNCRPD Report, and for the Cost of Disability Study” and that the review “will make recommendations on the scope of each scheme, on clear eligibility and prioritisation criteria, and on a needs assessment process.”
National Disability Strategy (NDS)
The Programme for Government sets out the commitment to develop an implementation plan to coordinate the delivery of Ireland’s commitments under the UNCRPD. With the conclusion of the National Disability Inclusion Strategy in 2022, the development of a successor strategy is underway. Government is committed to the delivery, in 2024, of a strategy that ensures a whole-of-government approach to the implementation of the UNCRPD and is committed to the principles of mainstream-first service delivery for disabled people. ILMI and other members of the DPO Network have been active members in stakeholder discussions on the development of themes and actions for the new NDS.
It is significant that one of the five themes proposed by DECDIY will be Independent Living and at the forefront of that is the continued commitment from the Disability Action Plan to long-term investment in PAS and the development of a clear system.
The fact that PAS is to the forefront of both the new Disability Action Plan and the new National Disability Strategy is testament to the power of collective campaigning to set a rights-based agenda.
The outgoing National Disability Inclusion Strategy (2017-2022) did not have active participation of DPOs and hence there is not a single reference to PAS in the 114 actions set out, as was noted in ILMI’s review of the NDIS in 2019 – Link to read ILMI Submission to NDIS November 2019 – PDF Version
HSE PAS Review Group
The work of the Review Group is ongoing – and while it has been measured and at times challenging, there is progress and ILMI has been determined to represent the expertise of those that use, started and have shaped the PAS.
ILMI has been consistent that there must be a Lived Experience Consultation Group of PAS users: only PAS users who will contribute to the overall proposed framework of the PAS when it is in progress. Again, there was some resistance to having solely PAS Users in this consultation group but the collective has been adamant that those disbled people who utilise the the service have an immense contribution to make and will bring solutions to the framework. There is now a Lived Experience Consultation Group that is to have its first meeting very soon.
This has been done with full transparency and is independent of service providers and industrial representative bodies. This last point has been crucial as to allow the free expression of views from Disabled People who use the PAS in an objective space without the presence of sector representatives.
ILMI recognises the leadership of the HSE and NDA for taking the necessary time and space to create the terms of reference and logistical issues around the Lived Experience Consultation Group – we hope this will continue.
Additionally, as there was no agreed standard definition of what exactly a PAS is, the Review Group spent some time creating a ‘holding’ definition of the Personal Assistance Service for immediate, yet not permanent, policy purposes.
The PA review group has decided on the following definition so far: “Personal assistance refers to person-directed / user-led, human delivered support available to a disabled person. A Personal Assistant (PA) is chosen and directed by the disabled person to provide person to person assistance for a range of daily activities, both inside and outside the home. This remains at the discretion and direction of the individual, thus promoting choice and control to empower the disabled person to live a life of self-determination. The disabled person may devolve administrative functions for their PA to a service provider.”
This definition emphasised the term ‘self-determination’. This is important, as although choice and control are fundamental parts of the PAS – self-determination is the essence of it. Self-determination means making our own decisions – not just what we are offered but what we want. It means going beyond limited choices to real futures and different ways of living.
In the coming months to come it is critical that we as PAS users and activists are not only kept informed of the work of the Review Group but also to remember that it is us and those that went before us that have initiated the Personal Assistance Service. The purpose of the Review Group is to create a standardise framework of PAS – and only the PAS – while there are many other forms of support such as home support, home care these are not to conflated with the Personal Assistant Service. This has been, and continues to be a challenge, but one in which we can met collectively. PAS, over the past 35 years, has been a critical and vital support for us to live our lives of independence and self-determination and while we must focus on the present, we must also look to the future. It was started by us and it belongs to us.
Nothing about us, without us.