Monday, March 27, 2017
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As Mary-Ann O’Donovan tells us, the role of policy and personal choice in moving to a new residence.

  • People with intellectual disability are moving to new homes/places to live.
  • Some people are moving to new homes in the community
  • Most people move to a similar type of home
  • People are not always asked if they want to move
  • People do not always get to choose who they will live with.

National housing policy for people with disabilities promotes the move from large residential settings to community-based living (with four people the recommended maximum number sharing the same residence). This is in line with international practice and the UN Convention on the Rights of Persons with a Disability, which states that an individual has the right to live independently as well as having the right to choose where and with whom to live. This is a welcome advancement of the self-determination, rights and autonomy of people with intellectual disability.

Who moved to a new residence?

Tracking where people with ID lived between wave 1 IDS-TILDA data collection (2010) and wave 2 data collection (2013), identified 120 movers. Of these 120 movers, just under 30 % moved to a less restrictive setting (e.g. a community home or independent living). The majority of moves made were lateral moves, which involved an individual moving to a setting similar to the one they were resident in previously. Also types of move were not all in line with the policy of de-institutionalisation. Some older people with ID were found to move to more restrictive settings (e.g. from community to institutional settings).

The breakdown of these movers by gender, age and level of ID are shown in Table 1.

 

Table 1: gender, age and level of ID 

 

Lateral Community Restrictive
Female 63.9% 37.5% 50.0%
Age (mean years) 59. 9 58.0 57.1
Mild ID 16.2% 9.7% 18.8%
Moderate ID 57.4% 45.2% 68.8%
Severe/profound ID 26.5% 45.2% 12.5%

 

Choice and involvement in decision to move?

Personal choice accounted for 10% of the moves made. The most prevalent reason for moving for the lateral movers was to accommodate the service (34.8%); whereas for more restrictive movers,  it was due to a change in health status (53.3%) and as result of service policy for more community-based moves (61.3%).

 

Though personal choice was not a dominant reason for moving for most of the participants, national policy and human rights conventions attest to the importance of choice of where and with whom to live, and that the individual with ID is involved in the decision-making process around moving to a new residence. The IDS-TILDA data illustrates that the rate of involvement of the individual in the decision to move was relatively low, with 7 out of 10 people not involved in this decision; and 4 out of 10 people reporting that they did not want to move. However, there was high reported happiness post-move. The decision to move involved multiple stakeholders for the majority of movers.

 

Clash of policy and choice?

From the data to date it would seem that moves that are taking place are not consistent with current policy directives, and that personal choice does not appear to be considered in most cases. This is a complex issue and needs broader debate. Though de-institutionalisation is a positive policy initiative, for people with ID who have only ever known this type of setting and have strong connections to the place and people within that place built over many years, the prospect of moving somewhere new could be quite daunting. This is a challenging situation for policy makers, service delivery, people with ID and their families. Further dialogue is needed to disentangle the policy recommendations, which are widely welcomed, and the individual’s preference for change (or not) in later years of life. How transition is planned and managed and the extent of involvement of the individual with ID and their chosen support, be it family, friends, advocates, is likely to impact greatly on successful implementation of the policy and enhanced quality of life and well-being outcomes for the individual with ID.

It is important to acknowledge the importance and enormity of such transitions, to track how they are happening, and their implications for the health, participation and well-being of the older ID population.  The Intellectual Disability Supplement to TILDA is currently tracking this movement by people with ID and will track longitudinally the impact on health and well-being. Although the movement of people with ID to community-based living is positive, it has the potential to impact negatively on people with ID if the individual is excluded from the decision-making and planning process, if the move is undertaken hastily and without due time and consideration, and if the required and appropriate supports are not in place to maintain the individual with ID in the new residence in the community.

More research is needed on both the processes and consequences of moves for people with ID as they age as well as greater insight into the extent of involvement in these processes. In addition, policy does not seem to acknowledge the diversity of moves that are happening in practice; there needs to be greater linkage between housing and health policies, to ensure the appropriate health and social care supports are in place so that the person with ID can age in the place of their choosing.

Author Bio

Mary-Ann O’DonovanMary-Ann O’Donovan is currently project manager of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) and based in Trinity College Dublin. Mary-Ann completed her PhD in Health Services Research in the Royal College of Surgeons Ireland in 2015, focusing on the health and housing needs of older people with an intellectual disability. Prior to this she was employed as research officer in the Disability Databases Unit of the Health Research Board. In this role she was responsible for the management of the National Physical and Sensory Disability Database (NPSDD). Mary-Ann has also worked as research officer in the National Disability Authority and the Rehab Group.

This article explores the experiences of participants of an Independent Living Skills Group: what they learned; how they learned it; and why decision making is so important in the context of the current Irish disability climate.

  • The government are noticing that it is very important for people with disabilities to make decisions about their lives.
  • A group of people with intellectual disabilities in Dublin came together because they wanted to improve their skills to be more independent at home or to be able to move out.
  • An Independent Living Skills Group was set up for these people to learn the skills that they needed.
  • People in the group learned a lot of practical skills but they said that the most important thing they learned was how to make decisions and that they can learn from each other.
  • This is important because the government wants to make new laws which will mean everyone gets to make decisions about their own lives.
  • Groups like the Independent Living Skills Group can help people to learn the skills they need to make decisions.

Before you leave the house every day, you have already made numerous decisions. You have chosen when to get up, you have chosen whether or not to brush your teeth, you’ve chosen what to wear, and you’ve chosen what to eat for breakfast. Without realising, you have made a significant amount of decisions. When you consider the amount of decisions you make during the time it takes to get up and leave the house in the morning, the amount of decisions made during a lifetime must be enormous.

 

Being able to make decisions is important. It shows that you are independent, responsible and that you have confidence in yourself. It has been identified that we learn how to make decisions by having opportunities to make choices and learn from our experiences. For example, if you decide to stay up late the night before you have to get up early, you feel tired the next day. The next time this situation arises, you may decide not to stay up so late to avoid feeling tired the next day. Therefore, having the opportunity to make decisions, whether they are considered wise or unwise, is paramount in developing decision making skills.

 

In Ireland, the importance of decision making for people with disabilities is slowly being recognised. The right to choose for people with disabilities is beginning to be recognised through the implementation of the New Directions Policy, as well as the promise of the Assisted Decision Making Act and the ratification of the Convention of Rights of People with Disabilities. The recognition of these basic rights suggests that Ireland is beginning to move from a paternalistic, custodial disability culture, to one which recognises the importance of informed decision making and equal citizenship for people with disabilities. Because of this, people with disabilities are beginning to take more control of their lives, as they are experiencing increased opportunities to make decisions. These developments led to the creation of the Independent Living Skills Group.

 

As a result of people with disabilities taking more control over how their lives are run, support workers and advocates in Dublin began to identify a cohort of people with intellectual disabilities who had goals of increasing their independence at home, or had goals to move into their own homes. Although there was significant motivation to achieve these goals, opportunities to develop the skills required did not exist. Therefore, in 2015 the Independent Living Skills Group was created to provide a space for people to learn the skills they required to increase their independence.

 

In 2015, 8 people with intellectual disabilities participated in an Independent Living Skills Group which occurred once a week for 16 weeks. This group was entirely member-led. During the first group session, members identified goals related to independent living, which they aimed to achieve through group participation. Group member goals included developing skills in cooking, budgeting and job seeking. Each week, group members selected group content and took an active role in planning the two-hour session. A piece of research was carried out during the group to explore the group members’ experiences of independent living and group participation.

 

Upon completion of the group, members participated in a group evaluation, which explored the group members’ experiences. Group members reported an improvement in independent living skills related to their initial goals. However, the most significant learning was identified in three key areas; decision making; recognition of the value of peer support; and the exploration of self through assuming group roles.

 

  1. Decision making – ‘making mistakes is okay, because that’s how we learn’.

 

The Independent Living Skills Group was framed by a ‘Will and Preference’ model. This model operated on the principle in that people have the right to make decisions regardless of if they are considered ‘unwise’. Due to this, group members made decisions which would result in ‘undesired outcomes’. These outcomes included burning pancakes; undercooking vegetables; and putting a piece of black clothing in with a white wash. As group members made these mistakes, they participated in group reflection to identify what had happened, and what they could do differently to facilitate their desired outcome. Group members began to identify how their decision making could result in their desired outcomes. On conclusion of the group, members identified these experiences as significant points of learning.

 

  1. Peer support – ‘The people kept me going every week because they all needed help and stuff. Yeah, because they know they can teach me and I can teach them and we can learn from each other. And that’s the best way of learning and it’s a good way to make friends as well.’

The Independent Living Skills Group was entirely member-led. Group members were responsible for selecting group content and planning each group. As a result, group members began to take ownership for group learning. Group members identified that they could learn from others, as they shared a lot of common experiences. It was recognised that group members could provide support and advise each other in relation to independent living goals in ways which the group facilitators could not. This was reported by group members as an empowering experience.

  1. Exploration of new roles – Beforehand I wouldn’t know how to, say, approach a problem or be more friendly with other people. And I know that I was friendly. But (now I can) be more funny’.

Group members took on a variety of roles throughout the duration of the group. These included the ‘joker’, ‘initiator’, ‘information seeker’ and ‘evaluator’, among others. Group members identified that they assumed roles which contrasted with those that they assumed in life outside of the group. Some group members reported assuming roles related to leadership and responsibility, while others explored roles related to humour and friendship. Members reported that an exploration of self and a sense of empowerment was facilitated through the assumption of novel roles.

Why is this important?

Through the exploration of group members’ experiences, it emerged that although the content of the group was important, the most significant learning occurred through group participation and interaction. By actively planning, participating in group activities and engaging in reflection, group members explored the impact of decision making and the experience of empowerment. These experiences were facilitated in an environment in which it was ‘OK to make mistakes’ and where reflection occurred following a decision making process. When contextualised in the current Irish disability climate, the findings of this research present an interesting point of discussion.

As Irish disability culture continues to evolve through the introduction of new policy and legislation, the population affected by these changes must also prepare for change. The findings from the Independent Living Skills Group identified that often, people with intellectual disabilities are not offered the opportunities to make decisions, let alone choose unwisely and make mistakes. This indicates that people with intellectual disabilities, when compared to the general population, have experienced fewer opportunities to develop decision making skills. Therefore, as the importance of informed decision making is being recognised, the decision making skills of those who are going to be making decisions needs to be explored, and opportunities provided to facilitate the development of decision making skills.

Not only did the Independent Living Skills Group identify the need for people with intellectual disabilities to develop decision making skills, it also uncovered a simple yet effective method of doing so. Decision making skills can be developed through group interactions which occur organically as a group works together to achieve meaningful group and individual goals. However, for these skills to be developed, an environment which both accepts that mistakes will happen and lets them occur, is vital. In summary, disability policy and culture is changing, and so must the people whom it will impact. If we want to keep up, we have to act now. Now is the time for people with intellectual disabilities to develop decision making skills through opportunities such as the Independent Living Skills Group where it is ‘OK to make mistakes because that’s how we learn’.

Author Bio

Eve RoseingraveEve Roseingrave is an occupational therapist who recently completed a masters in Trinity College, which explored the concept of Independent Living through the perspectives of people with intellectual disabilities and advocates from the National Advocacy Service.

If anyone would like further information on this group or has an interest in setting one up, contact Eve on roseine@tcd.ie

Donal Fitzsimons outlines the implementation and history of Home Sharing initiatives in Ireland over the past 30 years, and identifies the challenges ahead…

  • Home-Sharing has helped many people to live independently
  • It has increased over the past few years, and improved quality
  • People can live outside of centres, and in their community
  • Service providers can give a better living option to people
  • People get to go and live with families in their own home
  • Health Services need to develop Home-Sharing to continue to improve life for people.

Introduction

Home Sharing in intellectual disability services has existed in Ireland for the last thirty years as an alternative option to the traditional residential and respite care models of support offered to people with intellectual disability and their families.  The last ten years has seen further developments in Home Sharing, which was formally recognised as a model of residential and respite support by the HSE in 2012, with the publication of the report of the working group ‘Respite/Residential Care with Host Families in Community Settings’ (HSE, 2012). Service providers continue to offer people with intellectual disability and their families, alternatives to the traditional models of centre-based respite and residential group home living. Service providers have been further guided in the management and governance of Home Sharing placements with the publication of the ‘Host Family Support Model of Service Provision – Governance/Guidance Document to Support Implementation’ (HSE, 2012).

Home Sharing has been further developed and fostered by the National Home-sharing and Short-breaks Network (NHSN), established in 2003 to promote uniformity and high standards amongst disability service providers throughout Ireland that offer Home Sharing.  This alternative to the traditional model of service delivery has assisted HSE services and HSE-funded organisations in the development of person-centred and community-based supports.  While acknowledging that Home Sharing is not for everyone, the support model has grown over the years and is becoming more and more popular with people with intellectual disability, their families and service providers (Merriman, B. & Canavan, J. 2007, Murphy, T. 2010 & Coll, M & Scully, S. 2011, ISBA, 2016).

The 2016 International Short Breaks Association (ISBA) conference (a worldwide community promoting the delivery of short breaks) held in Edinburgh, further endorses short breaks as an essential support system aimed at families caring for people with disability.  ISBA recognises and promotes the ‘Every Disabled Child Matters’ (2011) campaign and the English Government has legislated for the provision of short breaks for families of people with disability. They recognise the importance of providing short breaks to families as a means to maintaining and continuing to support people with disability in their home/community, and that the importance of these short breaks cannot be overstated. Broach (2016) states that this has been achieved in England through campaigning policymakers and through political influence (ISBA, 2016).

Development of Home Sharing in Ireland

Home Sharing has developed primarily within the non-statutory sector since 1985 and incremental thereafter over the years in response to service need and demands. It was offered as a means to providing alternative forms of residential care and centre-based respite for people with intellectual disability who found themselves in crisis situations. In some HSE community healthcare organisations (CHOs), Home Sharing has developed positively over the last ten years as a response to service providers listening to, and offering choice to people with intellectual disability in the provision of alternatives to the traditional models of centre-based respite and residential group home living. This development encompasses the ethos and values of the HSE Social Care Division Operational Plan (2016), that people with intellectual disability ‘achieve their potential, living ordinary lives in ordinary places, as independently as possible while ensuring the voice of the service users and their family is heard’ (HSE, 2016, pg 2). It must be acknowledged however, that Home Sharing as it is currently delivered is inconsistent nationally.

National Expert Group on Home Sharing

In further recognition of Home Sharing as a model of person-centred and community-based support to adults and children with intellectual disability, the HSE established a National Expert Group in 2016 to carry out a review of Home Sharing in Ireland. The terms of reference for the National Expert Group was to review the HSE (2012) document ‘Host Family Support Model of Service Provision – Governance/Guidance Document to Support Implementation’, and produce a report with recommendations for the future provision of Home Sharing in Ireland. The report of the National Expert Group, entitled ‘Home Sharing in Intellectual Disability Services in Ireland’ (HSE, 2016) was complete in June 2016 and presented to the HSE Social Care Management Team in August 2016.

Report of the National Expert Group

The report is divided into three sections. Section 1 examines ‘Home Sharing as a Model of Service Provision’ and makes a number of recommendations for the service as it (a) is currently managed and governed, and (b) for it to continue as a model of service on offer to people with intellectual disability and their families. Section 2 entitled ‘HSE National Guidelines for Home Sharing’ provides a clear set of guidelines that service providers must follow and implement when offering Home Sharing to adults and children with intellectual disability and their families. Section 3, entitled ‘Guidance Document to Support Implementation’ provides a comprehensive implementation pack to support and guide service providers in Home Sharing as a model of service. Section 3 also includes a training pack that service providers must adhere to and apply to the existing Home Sharing service, and to the implementation and further development of Home Sharing (HSE, 2016).

Defining Home Sharing as a Support Model

As recommended by the National Expert Group (HSE, 2016), all placements are collectively referred to as ‘Home Sharing’ placements.  A ‘Home Sharing Family’ refers to any household providing short breaks or full-time support to a person with intellectual disability in their own (Home Sharing family’s) home. In order to bring a consistent approach to the service from a national perspective, Home Sharing as a model of support is sub-divided into three categories, namely a) short breaks, b) shared living and c) contract families.

a)      Home Sharing ‘Short Breaks’ families

Home Sharing ‘Short Breaks’ involves a Home Sharing family in the community offering a placement to a person with intellectual disability in their home (Home Sharing families home) for short breaks, and caring for that person as a member of their family.

b)      Home Sharing ‘Contract’ families

The physical, behavioural or healthcare needs of some children and adults with intellectual disability are complex and more challenging. In recognition of this, service providers recruit ‘Contract Families’ (specialist carers) from their existing pool of approved Home Sharing families to provide short break support. Contract families are expected to be available to provide short breaks for ten (10), sixteen (16) or twenty (20) nights per month.

c)       Home Sharing ‘Shared living’ families

A Home Sharing ‘Shared Living’ family is a family that provides full-time care to a person with intellectual disability, similar to a fostering placement.  The shared living family make their home available to a person with intellectual disability, to share their home on a full-time basis as a member of their family.

HSE Disability Reform Programme

As the programme for reform within disability services in Ireland progresses, there is a commitment from the HSE Social Care Division that Home Sharing, as a person-centred and community inclusive model of service, which is embedded in the principles of normalisation, is available to people with intellectual disability and their families as part of the menu of support options on offer. In recognition of Home Sharing as a support model available to people with intellectual disability, the HSE has made provision in the National Service Plan (HSE, 2016) for the further development of Home Sharing as a model of respite and full time support available.  This commitment will enhance and strengthen the existing management and governance arrangements for the cohort of people who currently receive Home Sharing support; at the same time it will improve quality, and strengthen the safeguards that are in place to support people with intellectual disability who receive Home Sharing support, either directly by the HSE or on behalf of the HSE.

Home Sharing as a Model of Service Provision

It is widely held internationally, nationally and indeed from the experience of local intellectual disability service providers in Ireland, that there are many advantages to Home Sharing as a model of service provision.  Home Sharing aims to have opportunities for self-expression in all aspects of the person’s life.  Home Sharing strives to empower people with intellectual disability to have dignifying relationships and to be included meaningfully in the life of their communities. The uniqueness of Home Sharing is that support is provided for individuals with intellectual disability by families in the community, in their own (Home Sharing family’s) home. People with intellectual disability enjoy the opportunity of developing new relationships and being part of new communities whilst enjoying a short break or full time support (HSE, 2016).

Siun

Siun is a sixteen-year-old girl who has cerebral palsy, a profound intellectual and physical disability.  Siun is extremely medically frail.  Attendance at school is sporadic due to poor health and frequent hospitalisations. Siun requires twenty-four-hour care and receives all her nutrition through a peg tube.  Her natural family are overwhelmed and exhausted with this relentless cycle of caring for their daughter.  A Home Sharing family provides two (2) overnight breaks per week to Siun.  Her natural family have described this support as a ‘lifeline to them’. Significant training was provided to the Home Sharing family by the clinical nurse specialist with the support of the paediatric hospital. Regular contact is maintained with the Home Sharing family by the clinical nurse manager and the social work team leader.

Families of people with intellectual disability are advising service providers that one of the supports that they need to enable them to continue to care for their family member at home is short breaks. Short breaks give them a break from their role as carer, and provide their family member an opportunity to be with others and benefit from new experiences. In research carried out by UCC Science Shops (2011), parents spoke about the pressure on them as carers.

Families who avail of Home Sharing have reported that close and trusting relationships have developed between them as carers, their family members and their Home Sharing families (HSE, 2016).

Challenges of Home Sharing

While recognising the advantages of Home Sharing for people with intellectual disability there are, however, strategic and operational challenges in the delivery of this model of support within an Irish context. There is currently no legal framework for the regulation of Home Sharing in Ireland, which is urgently required to underpin the safe governance and management of the service. As Home Sharing has developed ‘piecemeal’ over the years, limited resources are allocated to the monitoring, management and further development of Home Sharing nationally. There is also an inequity in the protection afforded to children with intellectual disability who are in Home Sharing on a full-time basis but are not under the protection of a care order.

Notwithstanding these obstacles, the National Expert Group advocate for statutory recognition of Home Sharing and for the continued development of Home Sharing as a model of support on offer to people with intellectual disability and their families. This is in keeping with international and national evidence to support Home Sharing as an individualised, person-centred and inclusive model of support service, as Home Sharing supports people with intellectual disability to receive support with families in the community. Nonetheless, Home Sharing in Ireland requires a commitment and further investment by the HSE and various Government departments for it to continue as it currently stands, and for its future development as part of the HSE service planning process.  Immediate action is required in this regard.

Conclusion

The report of the National Expert Group ‘Home Sharing in Intellectual Disability Services in Ireland’ (HSE, 2016) has identified both strategic and operational challenges for Home Sharing within an Irish context while at the same time it has provided the blueprint for resolving these issues. The report calls for the further development of Home Sharing as a model of full-time and respite support for people with intellectual disability in Ireland. This must be delivered in line with the HSE Corporate Plan 2015-2017, where the overall aim is ‘to provide high quality, sustainable health care which encompasses the values of Care, Compassion, Trust and Learning’ (HSE, 2015, pg 4). At the same time, Home Sharing must encompass the mission of the HSE Social Care Division whereby the aim is about ‘supporting the ongoing service requirements of people with disabilities with the designs and models of care/support and services to support and maintain people to live at home or in the community and to promote their independence and lifestyle choice in as far as possible’ (HSE Operational Plan, 2016, pg 2).

Reference List

Broach, S. (2016) Making Change happen in the provision of short breaks.  ‘Aiming High for Disabled Children and the Short Breaks Regulations in England’.  Monchan Chambers, London.

Coll, M. & Scully, S. (2011) Respite Care Services for Families Caring for a Person with an Intellectual Disability: Decision Making, Experience and Models of Respite.  Community/Voluntary Group: Home Share/Brothers of Charity.

Government Equality Office (2011) ‘Every Disabled Child Matters’.  London.

HSE (2016) ‘Home Sharing in Intellectual Disability Services in Ireland – Report of the National Expert Group’.  Social Care Directorate, Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2016) ‘Social Care Division – Operational Plan’.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2016) ‘National Service Plan’.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2015) ‘Building a high quality health service for a healthy Ireland’.  Health Service Executive Corporate Plan 2015-2017.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2014) ‘Safeguarding Vulnerable Persons at risk of Abuse’.  Dr Steevens Hospital, Steevens’ Lane, Dublin 8.

HSE (2012) ‘Report of the Working Group on Respite/Residential Care with Host Families in Community Settings’.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

HSE (2012) ‘Host Family Support Model of Service Provision.  Governance/Guidance Document to Support Implementation’.  Dr Steevens’ Hospital, Steevens’ Lane, Dublin 8.

International Short Breaks Association (2016) ‘Unlocking the potential of short breaks’.  Edinburgh, Scotland.

Merriman, B. And Canavan, J. (2007) Towards Best Practice in the Provision of Respite Services for People with Intellectual Disabilities and Autism.  Galway: Child and Family Research Centre, UCG.

Murphy, T. (2010) Room for One More.  Contract Families Pilot Scheme 07-09: Galway: Brothers of Charity Services Galway and Ability West Galway.

Ryan, M. (2011) An Evaluation of St Michaels House Contract Family Short Break Scheme.  Community/Voluntary Group: St Michaels House, Dublin.

www.edcm.org.uk/la_charter

www.isba.me

www.nhsn.ie

Author Bio

Donal FitzsimonsDr. Donal Fitzsimons, National Disability Specialist, Disability Reform Team, HSE Social Care Division qualified as an RNID in 1992 and he has held various clinical and managerial positions within disability services both in Ireland and abroad. He achieved a BA (hons) degree in 2003 and went on to receive an MBA in 2005. Donal’s career spans 25 years in disability services, and he successfully defended his PhD thesis entitled ‘A case study analysis of person centred planning for people with intellectual disability following their transfer from institutional care’ in 2012. Donal is currently employed by the HSE Social Care Division, as National Disability Specialist in the Office of Programme Reform. He was Chairperson of the National Expert Group on ‘Home Sharing in Intellectual Disability Services in Ireland’ (2016).

Dolan Family
  • In 2012, we applied for the social farming across borders project.
  • It involves opening up our farm and home to people with a learning disability
  • We had four gentlemen, Noel & Michael form Fermanagh and Michael and Stephen from Leitrim, coming one day a week to help us on the farm.
  • It became a great experience for all of us.
  • It’s the social part, rather than the farming, of Social Farming that is key to its success.

It’s not often that in life you get a chance to be involved in something that really captures your interest and your enthusiasm. Social Farming has for me, as it has for Miriam, Ben (14), Saoirse (12), James (11) and the rest of my wider family.

Back in 2012, we noticed an advertisement in the local newspaper for an expression of interest to join the original social farming across borders project. We didn’t know what was involved, but it sounded interesting and applied. Fortunately we were successful and chosen as one of the two farm families in Fermanagh to open up our farm and home to people with a learning disability and/or a mental health issue. During the project, we had four gentlemen, Noel & Michael form Fermanagh and Michael and Stephen from Leitrim, coming one day a week to help us on the farm and become part of normal daily farm life. All were at that stage attending traditional day services in a day centre.

farms homeshareNoel & Michael P. travelled about 13 miles, and Stephen and Michael M. lived 22 miles away. During the thirty weeks they were coming to the farm, we not only got to know them, but also their families. In 2015 we resumed with short 10-week taster sessions supported by our local health services. This time however, we had three ladies, Kerry, Ciara & Amanda.  One was local and two were from Enniskillen (25 miles away). Even though the placement ended six weeks ago, as I write this on a Saturday night I am giving the local lady a lift to see one of the others who is now her friend, and is performing in a play in Enniskillen.

For us the great thing about offering a support service like Social Farming is that you do it in your own home and can offer all the hospitality that goes with that whilst remaining professional in other aspects of the relationship. The people who came did so because they chose to – they had an interest in farming and the outdoor life. We believe however, that they stayed not so much for the farming but because it became a great experience for all of us. Relationships and real roles evolved around what we were doing – ”she talks about it all the time”, ”It changed her life actually”, said Kerry`s mother Gemma – Kerry is one of the girls who came to the farm.

farms homeshareWe had some great days when family members came to our farm just to see what was happening and got stuck into the daily tasks of running a beef and sheep farm. Some families we already knew from saying hello in the local shop, but through Social Farming we have got to know each other better, and do things with people in the community which are usually seen as being the gift of “specialist services”. Unlike traditional services, we are there and living in the local community 365 days a year. This is respected and not abused by people, but it means we have a consciousness and awareness for opportunities to involve and include people, not just through the supports we provide on the days they are with us but by being aware of their wider interests.

I know our experience was similar to many of the other families when it came to including people in social events in the locality on days outside the normal days for people to attend the farm. In essence, we believe it’s the relationships you built while working and sharing together on the farm, the cup of tea around the kitchen table, the visit to the co-op shop, the call of the vet and the AI man – all are part of the real life of farming and are what makes social farming both ordinary and unique.

farms homeshareThe project ended, and since then we have kept up the contacts and we are so thrilled to get cards on children’s birthdays delivered by hand, when we can catch up over a cup of tea. Social Farming or as we like to call it ‘farming socially’ has so much to offer our Irish society. The demography of Ireland, where the average size of a farm is 60 acres, and is farmed in most cases by a family who have a multi-generational connection to the farm and the community, is ultimately suited for providing support to each other.

The wider connectivity reaches out to those families who have support needs in a particular generation and can make their survival in their community viable. This model, if developed, can make for more cohesive and supportive communities through those family supports.

farms homeshareIn summary, it’s the social part, rather than the farming, of Social Farming that is key to its success and why we as a family have continued to offer supports to other families who have someone on a journey to which we can make a contribution. The relationships around farming and family are a great place from which to grow.

For anyone looking to get involved our advice would be to get engaged – and we mean from both sides of the relationship. The twenty farm families at the end of the project formed Social Farming Ireland to help develop and promote the concept and we would love to hear from you.

The Dolan family.

http://www.socialfarmingireland.com/

https://dolanssocialfarm.com/

farms homeshare

Author Bio

Malachy Dolan and his family are farmers, operating an organic suckler herd on 50 hectares in South-West Fermanagh.

Bernie Fay introduces two well-established respite and support programmes which continue to benefit people with disabilities and their families.

  • Homesharing is an idea whereby people in services go and spend the night with a family in the community.
  • It has a great effect on everyone involved.
  • Services providing this have sprung up around Ireland.

The Muiríosa Foundation provides both respite and long-term support though the Share a Break and Room to Share schemes.

The Share a Break scheme has been developing over the past 30 years.  It provides respite in a family setting on an on-going basis to children and adults, the range of intellectual disability being from mild to severe.  The overarching aim of Homesharing is that the person placed feels part of the Host Family.  The processes involved in these schemes should have this as the ultimate aim.

This service allows people to have an individualised form of respite.  The scheme continues to expand each year.  This scheme is administered by the Muiríosa Foundation and funded by the HSE.  The Muiríosa Foundation administers the largest scheme in Ireland:

  • The counties involved are Westmeath, Longford, Laois, Offaly and south Kildare;
  • In 2015, 138 children availed of 5,739 days of Share a Break with 138 hosts;
  • A total of 135 adults availed of 6,682 days of respite under the scheme;
  • There is a total of 218 host families involved in the scheme.

The testimony below illustrates the important role this scheme plays in the lives of people with an intellectual disability and their families.

Catherine Keane (mother of Aidan (aged 10)): “Looking after my son is physically, mentally and emotionally demanding.  He requires a high level of supervision and it is difficult to maintain this on a daily basis.  It is very tiring, especially when you have other children whose needs also need to be met.

I have no family support network to help with his care.  I have come to depend and rely on Share a Break in order to help me maintain the level of care he requires.  Our life is structured around our son.  We have to work around him and his needs.  My other children also have to work around him, in terms of where he can go, what activities he can participate in etc.

Share a Break for me is a break. It is the only time aside from school when my son is away from home.  I do not have to worry.  I know he is safe and happy.  It gives me a day of freedom and a break from routine.  In his absence, the house is more peaceful.  It is even a break from the noise.  I have used this time to do even simple things such as go for a walk, sleep, go into town and walk around the shops with my daughter or go for lunch.  This is time when you know you can plan something, have a rest or just spend time with your other children.

We benefit as a family also.  My daughter can choose a programme on TV.  She recently started ballet.  This would not be possible without Share a Break.  Share a Break gives us the opportunity to experience a little normality – to do things that others take for granted.  I am very thankful for this.  It is invaluable to me and I do not know how I would manage without it”.

Increasingly, families are opting for family-based short breaks rather than seeking residential respite.  However, if some people prefer the latter service, it is important that this remains an option for them.

The Room to Share scheme has been in operation since 1993 and provides long term, permanent care in a host family setting to people aged 18 and over.

Those currently availing of the scheme live in Counties Longford, Westmeath, Laois, Offaly and Kildare.  The range of disability of those who avail of the scheme is from mild to severe.

What is distinctive about the Room to Share scheme is that people live with their host families on a full time, permanent basis.

In 2015, 22 adults lived permanently with families under this scheme.  These people feel part of the host family and this is a mutual feeling.   The testimonial below illustrates the way in which one’s quality of life can be enhanced by this scheme.

Thomas is a 63 year old man who enjoys the outdoor life and is particularly fond of working with small animals and doing gardening.  Six years ago, due to challenges pertaining to his family, Thomas ended up living in a large residential centre.  Those who were living there had needs which were greater than those being experienced by Thomas.  He became depressed and withdrawn.  It was agreed that his quality of life was being compromised by living there. 

Thomas started going for weekends to a respite homesharing family and very much enjoyed this.

His mood changed and it was decided that he would go to live on a full-time basis with this family.  He lives happily with his new family and enjoys time spent with their dogs and loves the work in their extensive gardens.  Thomas enjoys going to football matches with the family and likes the peace and tranquillity of the countryside.  Thomas also attends a day service and likes the time he spends there interacting with friends.

Equity and Inclusion:

The principles of equity and inclusion are realised in Homesharing.  Studies undertaken on traditional respite in comparison to Homesharing models indicate high levels of satisfaction with the latter scheme (Merriman et al (2007), Murphy, T (2010).

It is hoped that this can be expanded further in the future.

 

References:

Merriman, B. and Canavan, J (2007)

“Towards Best Practice in the Provision of Respite Services for People with Intellectual Disability and Autism”, Galway Child and Family Research Centre UCG

Murphy, T (2010) “Room for One More? – Contract Families Pilot Scheme ’07 – ‘09” Brothers of Charity Services, Galway and Ability West, Galway.

Author Bio

Bernie Fay is Head Social Worker with the Muiríosa Foundation.  She has been working on the Homesharing Projects since 1983.

Kevin Murphy illustrates how he managed to broaden his horizons, meet new people and travel – and all for his love of West Ham Football Club.

  • Kevin has been a West Ham supporter since 1974
  • He has found a supporters club that have accepted him as a member
  • He has travelled many times with them to Upton Park to watch his favourite team
  • He has gained massive independence and confidence and joy from this group he is a part of and made to feel welcome
  • He looks forward to West Ham’s move to their new stadium in 2016

I have been a part of WALK since 2002. Sport is a huge part of my life, particularly football. I enjoy watching football – both through going to games or watching on TV- and talking about the highs and lows the next morning with friends in work. I live in Inchicore in Dublin and regularly take trips on the LUAS to Tallaght to watch Shamrock Rovers, but my club is West Ham United.

I’ve been supporting West Ham since 1974. I’ve been asked ‘’Why West Ham!?’’, but I always enjoyed the style of football they played, particularly under the manager John Lyall. West Ham were relatively successful at the time. They won the FA Cup in 1975 and the following year they got to the European Cup Winner’s Cup Final, although we were beaten by Anderlecht. My father followed Aston Villa, so it was a claret & blue house!

Although I’d been following West Ham for a long time, I never really met other West Ham fans in Dublin. I discussed this with my keyworker at one of my planning meetings in the Summer of 2012.  I thought it would be great to find like-minded fans to meet up and watch West Ham games. A quick Google search later, and The Dublin Hammers turned up!

The Dublin Hammers are a West Ham Supporters Club based in Dublin. They meet up regularly in Branningan’s Bar on Cathedral Street in Dublin City Centre to watch West Ham games. This sounded perfect.

Jimmy Conway was the contact in the club. We contacted Jimmy to get more information about the Supporter’s Club and to express an interest in becoming a member. Jimmy was extremely helpful and said I would be more than welcome to join the Supporters Club.

As the season in England was coming to an end, and wasn’t due to start again until the end of August, I had a bit of time to work on becoming familiar with Brannigan’s Bar and importantly, how to travel there from my house. Over the next couple of months, I worked on figuring out the route and becoming comfortable with travelling it.  This involved getting the Luas from BlackHorse to Abbey Street and identifying landmarks, which would help me find Brannigan’s Bar. I also took the time to get comfortable using my mobile phone in case I needed it.

On 23rd August 2012 – two days before the first meeting of the Supporters Club in Brannigan’s Bar, I travelled independently from Inchicore to Brannigan’s Bar.  I agreed that a staff member would also do the journey, but they would do it a half an hour after I left.  I got the Luas from Blackhorse. I got off at Abbey Street and began looking for the landmarks. The Spire. Check. Burger King. Check. Spar. Check. And there was Brannigan’s. The staff member arrived shortly after. I told them how comfortable I was doing the journey independently, and was looking forward to travelling independently on Saturday and meeting Jimmy and the other Supporter’s Club members.

A couple of months passed and I was regularly travelling into Dublin City Centre to meet up with the Club. I looked forward to the meetings. It was a great atmosphere in the Bar. Cheering every Hammers’ goal and bemoaning every goal against. It was great experiencing these moments with my fellow supporters.

I was turning 60 in May 2013, and I was planning on having a party in the Red Cow. I had invited Jimmy from the Supporter’s Club and I was delighted he was able to make it. It was a fantastic night spent with many of my friends, with the occasional glass of red wine and Neil Diamond sing-along!

That night, Jimmy had mentioned that the Supporter’s Club were running an overnight trip to Cork in July to see West Ham play a pre-season game v Cork City, and asked would I be interested in going. It’s not everyday West Ham come to Ireland, so I was excited about this opportunity and expressed my interest in going on the trip. Jimmy passed on the details and over the next couple of weeks I worked on making the relevant bookings (train tickets, match ticket and a room in The Metropole Hotel in Cork – a beautiful hotel). I intended to travel independently to Cork with the Supporter’s Club.

Jimmy met with a member of staff in WALK to discuss the trip in detail. Jimmy said the other lads in the Club were always very positive about my involvement with the Club and that we were all there for the same reason – to support our team!  Jimmy felt this trip was something I could do without staff support. Jimmy felt that I had settled into the Club well and I was completely comfortable with everyone in the Club too. Jimmy and the staff member exchanged the relevant contact numbers and it was all systems go.

Now, I needed to spend time to figure out how to travel from Blackhorse Luas Stop to Heuston Station because this is where I would be meeting the lads from the Supporter’s Club to catch the train to Cork. I did several trial runs – both with and without staff supporting me.  I was comfortable travelling independently on this route ahead of the match date.

Another thing I worked on was identifying and becoming familiar with things in Heuston Station such as the location of ticket kiosks, platforms and toilets to avoid confusion on the morning of the trip. Jimmy agreed to meet me at the Heuston Luas stop on the morning of the trip, where we would both go and collect our train tickets together. We were able to book our seat together on the train – which was great – as we were able to keep each other company and discuss the game that evening – we were both really looking forward to it!

The trip went well. West Ham won 6-2, so I got to see plenty of goals and a couple of first-team stars were on show, which I wasn’t expecting, and was a bonus! It was great to bond with the lads in the Supporter’s Club too and we still share stories from the trip to this day (What happens on tour though, stays on tour!!!)

Having seen West Ham come to me, it was now my turn to go and see West Ham in London.

I didn’t have long to wait. The Supporter’s Club were running a trip to see West Ham v Aston Villa on at the start of November. The group intended to stay overnight, however I preferred to do a day trip. A staff member from WALK would travel to London on the flight with the Supporter’s Club, and after the game I would arrange to meet the staff member and travel back to the airport to head home.

My deposit for the trip was paid, my seat on the Supporter’s Club bus was booked, my flights were booked, my match ticket was booked and I was all set to go.

On the morning of 2nd November 2013 – a staff member and I travelled to the airport to meet the lads in the Supporter’s Club. We were all booked on the same flight, which was great. Upon touching down in London Stansted, the staff member exchanged numbers with the one of the guys in the Supporter’s Club and we arranged a meeting point after the game.

Unfortunately the game ended 0-0 – there is nothing worse than going to a football game that ends 0-0! The consensus amongst the Group was that it was two points dropped, but I had enjoyed the day and my first experience travelling to London with the Supporter’s Club. I promised myself it wouldn’t be the last.

Over the next couple of months, I continued to travel regularly into Brannigan’s Bar in Dublin City Centre to meet up with the Club and watch games on TV. The Club then announced plans to travel to London in May 2014 to see the game v Tottenham Hotspur – the derby! What a game that promised to be – I knew I just had to be there.

It was very similar to the last trip the Club ran in November 2013. The Club planned on staying overnight, but I preferred to do a day trip. I agreed a staff member would travel with me again to London, that I would head off with the Club for the match and afterwards I would meet up with the staff member to travel home. I paid the deposit and made the relevant bookings. It was just a waiting game now.

The morning of May 3rd arrived and the staff and I travelled to meet the Club – bright eyed and bushy tailed, in Dublin Airport. Again, we were on the same flight and we were all in jovial mood. West Ham v Tottenham is one of the biggest games of the season if you’re a West Ham fan, and I felt really fortunate and excited to be going to see this game. Going into the game, West Ham weren’t playing particularly well of late and Tottenham were in a good run of form, but ever the optimist, I was hopeful of a West Ham win!

On a beautiful summer’s day in East London, West Ham put in a great performance to win the game 2-0. I thoroughly enjoyed the game and it made the journey home a happy one.

I’ve been on three more trips to London with the Supporter’s Club – in November 2014, May 2015 and October 2015. In November 2014, we drew 0-0 with Aston Villa – again! – Which was like déjà vu from my first trip in November the previous year! In May 2015, we were beaten 2-1 by Everton – where I saw my record of West Ham never being defeated disappear! And my most recent – and arguably my most enjoyable – trip was in October 2015, where we beat Chelsea 2-1 in another derby game.

I particularly enjoyed that Chelsea game as the 2015-2016 Season represented the last season of West Ham playing in Upton Park before they moved to the Olympic Stadium in the summer of 2016. That famous old ground has been home to West Ham since 1904. When I went to visit family in London in 1974 – as a student at the time, I went to Upton Park to watch West Ham. 41 years later, I was possibly watching them play in that same old ground for the last time. It was great to win the game on the day to ensure my last memory of Upton Park was a happy one!

When West Ham move to the Olympic Stadium in the summer of 2016, it will open a new chapter in the club’s history and a new opportunity for myself too. I watched the London Olympics on TV in 2012 and was impressed by the stadium. It looked fantastic.

I look forward to my first and many more trips to the Olympic Stadium with the Supporter’s Club to seeing West Ham play.

Author Bio

Hi, I’m Kevin, I live in Inchicore. I’ve got lots of interests: dancing classes, choir, guitar lessons, going out to gigs – anything to do with the music side of things. One of my biggest loves is my work. I work part time in 2 cafes and a bar. I enjoy learning new skills and working as part of a team. I enjoy meeting the customers and looking after their needs. I enjoy the banter with the other staff and the customers. I am also a serious sports fan – soccer, rugby and gaelic. Developing this passion and meeting new people through it is what this article is about.

Why we should all support the Love Not Hate Campaign – by Ian McGahon of Sunbeam House Services...

love not hate
  • Inclusion Ireland recently signed up to the Love Not Hate Campaign
  • It is a campaign to bring in a new hate crime law in Ireland
  • People with disabilities do get targeted (sometimes violently) in hate crime
  • In the UK, hate crimes against people with disabilities have included
    • Adam Pearson being told on a YouTube comment he “should have been burned to death at birth” because his face is disfigured
    • Christine North, an intellectually disabled woman, being urinated on while she lay dying in July 2007
  • We should all support the Love Not Hate campaign

Recently, Inclusion Ireland signed up as a supporter to the Love Not Hate Campaign. What exactly is the Love Not Hate Campaign? Why should it be supported by people with disabilities and disability advocacy and human rights organisations? Why do we need the campaign in Ireland and what does it propose?

Love Not Hate is a campaign led by ENAR (European Network Against Racism) Ireland and its Action Against Racism Group. It is a campaign to bring in hate crime legislation in Ireland. Most European countries have laws on hate crime but, uniquely, Ireland does not. The campaign proposes a law in Ireland that provides for sentencing to be increased and for crimes to be treated as more serious if prejudice or hate can be shown to be a motive.

A hate crime is, typically, a violent crime motivated by prejudice, when a perpetrator targets a victim because of their perceived membership of a certain social group. People targeted by hate-motivated crime in Ireland are usually from an ethnic minority background (racist hate crime), from a religious minority (religious hate crime), Lesbian, gay or bisexual (homophobic hate crime), Transgender (transphobic hate crime), People with disabilities (disablist hate crime).

Disablist hate crime or hate crime where people with disabilities are targeted because of their disability is something that rarely gets discussed or highlighted in public or in the media. In the UK it has become a growing phenomenon, because the public discourse has turned against people in receipt of state welfare support and portrays them as scroungers and spongers, and certainly people who use wheelchairs are violently targeted.

Adam Pearson, a UK actor, highlighted the issue last year on BBC3. He has a severe facial disfigurement and was told on a YouTube comment he “should have been burned to death at birth”. No action was taken by the state or YouTube on this despite, as Pearson points out, the fact that perpetrators of racist online comments on Twitter have been prosecuted.

Pearson now campaigns on the issue of disablist hate crime, and has highlighted several cases. Kevin Davies, an epileptic aged 29, was kept in a shed by “friends” where he was fed on scraps and beaten for weeks before he died in 2006. One of his torturers kept a diary of the abuse. Christine North, an intellectually disabled woman, collapsed and lay dying in Hartlepool in July 2007, neighbour Anthony Anderson urinated on her. He also egged on a pal to film the incident.

We are all probably very aware of hate crimes that target migrants, black people, Muslims, refugees and lesbian, gay, bisexual or transgender people, but honestly, how many of us really take the issues of disablist hate crime seriously? Until approximately 3 years ago I didn’t take it too seriously as an issue either. Since then I’ve seen it in voluntary work that I do with the Council of Europe’s No Hate Speech Movement and I’ve also seen it in my own day job. I work with people with intellectual disabilities, and have been told of several cases of verbal abuse and harassment (thankfully nothing seriously violent).

When I was researching this article, I found 2014 statistics on hate crime in Ireland published by the OSCE (Organization for Security and Co-operation in Europe). To me they were startling, and showed that we in Ireland do not take this issue seriously at all. The OSCE found two things: one, that 53 crimes were recorded by Gardaí as having a bias motive, and two, that 171 crimes were recorded as having a bias motive by NGOs and civil society organisations. Only 1 of these 171 was recorded as a disablist hate crime. At face value, this may suggest that disablist is not a big problem in Ireland. However, delving further into this it is clear that dozens of hate crimes were obviously not reported to the Gardaí. Additionally, when we look again to the UK, the police there found in a 2013 report that disablist hate crime was not taken seriously enough in how it is prosecuted.

I was personally involved in researching hate crime against LGBT people in Dublin in 2006, and we found huge under-reporting. Considering all of this (the OSCE data, the UK experience and my own personal experiences of researching hate crime against LGBT people and being aware of people with disabilities subject to verbal harassment), I firmly believe that Ireland is not taking the issue of hate crime seriously. We need to update our hate crime laws, and disablist hate crime needs to be firmly recognised.

The Love Not Hate Campaign is something all of us should be supporting.

We need to send a clear message that racism, homophobia, transphobia, disablism and hate have no place in our communities and that our society must be inclusive of all.

We need to update Ireland’s hate crime laws for many reasons.

We must break the silence on hate crime, encourage people to report it, and find effective ways to address all forms of prejudice.

For more information on the campaign see http://enarireland.org/hatecrime/

Author Bio

ian mcgahonIan McGahon works in Sunbeam House Services, supporting people with intellectual disabilities. In his spare time he is a campaigner on various equality and human rights issues. He volunteers with No Hate Speech Movement, a Council of Europe youth campaign promoting human rights online. In particular he has campaigned on LGBT rights and led the Yes Equality marriage equality referendum campaign in Co Wicklow.

Chris Lowe draws an interesting correlation between environmental and disablement concerns, and argues that rather than being distinct, the two may be mutually complimentary – it is necessary to consider both when legislating for change to improve conditions for people with disabilities, and for society as a whole…

One thing is certain; disabled people of all sorts need to be involved in environmental politics, because if we’re not part of the conversation, decisions that divide us will be developed. “Nothing about us, without us”.

As a disabled person who has had an interest in environmentalism for a while, one thing has always struck me – whenever the issue of climate change comes up, someone will always raise the issue of population control. These tend to be isolated voices, and the discomfort of other environmentalists is usually clear because when they say there are too many people it usually means other people, usually the poor, those living in poorer nations and disabled people. It also distracts from solutions to important areas such as carbon policy. These fringe environmentalists can generally be described as Malthusians and offer us a stereotype of environmentalists. Notable Malthusians who have taken anti-disability positions include animal rights ethicist Peter Singer (who argued for the killing of disabled infants), the anti-technology primitivist John Zerzan (notable for his use of the term “pull the plug” in  relation disabled people), self-proclaimed eco-fascist Pentti Linkola, the right-libertarian Garret Hardin (whose support for The Bell Curve and its pseudo-scientific linking of IQ and race puts his earlier calls for sterilisation based on intellect in a particular light).

The Malthusians draw on the ideas of Thomas Malthus, a cleric who lived in the 18th and 19th centuries. European society had seen the French Revolution sweep away the old order of nobility, and monarchy. Malthus, a supporter of conservatism, believed that Revolution could be avoided if population could be limited through natural checks and that Government intervention should be as limited and unappealing as possible. If that failed, revolution and famine were inevitable consequences. Subsequent generations took up his ideas and while he himself would now be identified as pro-life, many in the eugenicist movement who called for compulsory abortions and sterilisation identified as neo-Malthusians. His ideas of making what we now know as welfare as deficient as possible, anticipated and at times influenced the development of the workhouse and other systems of confinement, as well as having similarities with the current unproven claims of “scroungers” and “strivers” that come from the centre right parties. By the mid-twentieth century, a number of ecologists such as Garret Hardin and Paul and Ann Ehrlich, embraced it with an environmental gloss. The argument was still that an ever-growing population was competing for ever scarcer resources.

Most environmentalists are not Malthusian. The former leader of the Irish Green party, John Gormley, writing in the September 2015 issue of The Village expressly condemned the reactionary politics which both opposes immigration and calls for compulsory abortion, infanticide, and euthanasia in the case of disability and old age. The eco-socialist movement takes a similar line, calling instead for the changing of society, and while focusing on opposition to anti-migrant and pro-population control in the third world, their position can easily be adapted to a social model position. The problem, as eco-socialist Ian Angus points out, is not the inadequate resources but their unequal allocation; in other words, we need a system change, which is precisely what we argue for with the social model of disability.

While not all environmentalists are Malthusian, the casual ableism that we see elsewhere in society is present here. Even among the most radical you do see here the usual ableist terms, and those who don’t, often exclude us completely from their analysis. Less equality-orientated environmentalists fall into anti-vaccine conspiracy theory territory, with claims like the one that such-and-such a chemical causes autism. To some, this presents a barrier to activism in these spaces. Others including myself see this as making our involvement more important, as we need to ensure that future environmental policy includes disability-safe positions. Our American counterparts have developed the politics of eco-ability, which takes as a starting point a respect for difference and an opposition to the idea of the normal. Eco-ability specifically comes out of animal rights activism and academia, in which many of the same ableist ideas circulate, and it provides a space for disabled people in which we can both interact with and critique ecological politics.

While opposition to ableism is mainstream disability thinking, some of the positions taken within eco-ability are likely to be controversial even within our own groupings – the extension of the politics of disablement to animal rights, for one thing. Other ideas are useful, such as linking the need for assistive and other technologies to be developed as environmentally sustainable, non-harmful to people and promoting interdependence, as well as its linking of ableism to intersectional systems of inequality, power, and social control, including those that operate at a global level.

Alex Ghenis of the World Institute on Disability specifically links the issues of disability and climate change. He does this in two ways; firstly, that more people will develop impairments through injury, disease, malnutrition and as a consequence of conflicts and wars caused by climate change. The current Syrian conflict provides us with a concrete example of a war having partial roots in climate change. Secondly, disabled people will be excluded through inaccessible shelters or fragile support systems, and suffer negative health effects. This will also impact climate migrants, who already face barriers due to immigration policy (including Ireland’s continuing love of locking people into institutions, in this case direct provision), and if they have impairments they face inaccessible accommodation, transport and an ableist and racist state bureaucracy. During the recent passing of the International Protection Bill, it was suggested that it would exclude disabled migrants from family reunification. Ghenis’ own solutions involve managing these systems, such as easier-to-access welfare systems, increased employment, and accessible housing.

In some respects, his solutions seek to assimilate us into mainstream society rather than substantially change society. The social model has always offered us an analysis of how the built environment can exclude us, the use of a town built by wheelchair users to explain the social model, and why removing socially-created exclusions shows us this. We don’t have to use exaggerated stories – we can see this in our everyday lives and the development of Ireland’s built environment.  For example, Ireland is incredibly car-centred, in part as a consequence of the deliberate policy of suburbanisation; for someone like me, whose impairment prevents me from ever driving, this combined with increasing public transport costs potentially excludes me from full participation. Many solutions to Ireland’s car dependency and society’s carbon footprint suggest cycling as an activity which specifically excludes many (though by no means all) disabled people. Likewise, a car-free scheme in areas of Dublin City excludes disabled people who require the use of their cars. An environmental- and disability-centred approach to this could see, for example, a public transport system that is accessible physically, financially, and in terms of connectivity and frequency. It would also involve greater emphasis on developing local economies, and having an impairment-flexible built environment.

The social model and environmentalism have one important link – both require system change. For the social model, this has always meant seeking a barrier-free utopia so that limitations placed on us over our impairments are removed. One thing is certain; disabled people and our allies, across all impairments, need to be involved in environmental politics, because if we’re not part of the conversation, policies that segregate us again will be developed. As environmental policies and climate change concern us all, we have a strong reason to invoke the old slogan: “nothing about us, without us”.

Author Bio

Chris Lowe is an independent
(unemployed) disability researcher, currently awaiting a
non-disability related viva at Maynooth University.

(https://twitter.com/@ChrisLowe_Irl)

The theme of the National Disability Authority’s Annual Conference (12th October) in Croke Park is ensuring the availability of mainstream public services for people with disabilities. The How Walkable Is Your Town? report took centre-stage at the launch by Minister Frances Fitzgerald…

It has been Government policy for the last fifteen years, and a legal requirement for the last ten years, that mainstream public services would be planned and delivered to include people with disabilities.

Opening the conference, Minister for Justice Frances Fitzgerald TD said that

“Hearing from people with disabilities, who have been driving the mainstreaming agenda, is a crucial part of today’s programme.”

At the conference she launched the report How Walkable is Your Town?, produced by Age Friendly Ireland in partnership with the National Disability Authority.  This report gives the findings of a series of ‘walkabouts’ by a diverse group of people at different stages in life, and including people across different types of disability, to identify examples of obstacles and good practice in the daily environment of our streets and towns.

Minister Fitzgerald said

“This report is an excellent example of practical research having a positive impact on the participation of people with disabilities in their local communities.”

She also welcomed the delegation from Northern Ireland led by Mr Stephen Farry, MLA, Minister for Employment and Learning – and spoke on the conference theme.  She added:

“I welcome the cross border focus of this conference and the continuous opportunities it presents for ongoing co-operation and learning between Departments and agencies in both jurisdictions.

Minister of State, Aodhán Ó Ríordáin, TD, (with responsibility for New Communities, Culture and Equality and Drugs Strategy) emphasised the Government’s commitment to including people with disabilities in the mainstream:

“The Government’s continuing commitment to mainstreaming is emphasised by the recent launch of the Comprehensive Employment Strategy for people with disabilities and the new round of public consultations on the development of a renewed National Disability Inclusion Strategy.

Minister Fitzgerald and I will continue to work with our colleagues across Government to deliver the necessary changes to allow for improvements in the lives of people with disabilities.”

The National Disability Authority’s Chairperson, Helen Guinan, said:

“After 15 years of mainstreaming as Government policy, there is still work to be done. We need to build on what has been achieved to date. Today we will hear a lot of great examples. This learning has to be captured and embedded across the public sector.”

The conference includes practical examples from North and South of the border of how disability is mainstreamed in designing and delivering different public services and how key enablers, such as leadership, good planning and cultural change, are critical in the process.

How Walkable is Your Town? – key points.

  • Delivering mainstream services to people with disabilities is established government policy since 2000, and is underpinned by obligations for public services that are set out in the Disability Act 2005.
  • The National Disability Authority, through its Centre for Excellence in Universal Design, provides guidance and support to the public sector on producing universally designed services. In 2014 the Centre worked with Age Friendly Ireland on Walkability Audits, to inform the development of an effective audit tool for Irish roads and streets. The audits were carried out as part of the 2014 Age Friendly Town Programme, using a Universal Design approach.
  • Walkability audits were conducted in eight Irish towns and urban centres. The result was the “How Walkable is Your Town?” report.
  • The key outcomes from these audits revealed that:
    • People were for the most part happy with the structures of their towns, which on the whole provided pleasant environments to walk in.
    • People were not as happy with poor design and maintenance of footpaths, obstacles on footpaths making it difficult to get around and the need for more pedestrian crossings.
    • The behaviour of people using the towns can really impact on how walkable the towns are, for example, people parking on footpaths, blocking crossing points and using accessible parking spaces when they shouldn’t.

Paul Alford shows the possibilities for decision-making and living an independent life in the community, available to people with disabilities with a positive attitude and support from helpful people.

Paul Alford
Paul believes strongly in a persons right to make their own choices. He is moving into his own apartment. He enlists the help of an independent brokerage service to help him spend his money wisely. He hopes others can do like he has.

My name is Paul Alford. I have worked for Inclusion Ireland for the last ten years as a self-advocate.  I believe in rights for all people with intellectual disabilities.  I believe all people should live as independently as possible and live the way they want to live.  It is very important for people to have the right support and choose the person they want to support them.  This does not happen for so many people with intellectual disabilities, and I want change to happen right now because it is taking too long.

People with disabilities should interview support staff.  Everyone should have a choice and pick their support in their life.

For so long people with disabilities have not had any power in their lives.  We have chosen where we live, who we live with and who supports us.  We have decisions made for us every day.  We want our decisions listened to and respected, taken on board.  A lot of people with disabilities are afraid to speak out because they will get into trouble with management, staff and parents.

I have been fighting to live my own life independently for a long time.  Now I am going to move into my new apartment and live on my own.  I am buying my own place so I will own it for the rest of my life.  I am leaving a disability service where I have lived for over thirty two years.

houseI have got support from a service called PossibilitiesPlus.  It is a broker service – it helps people get funding from the HSE and disability services, so I can employ a support worker.  They manage your money and pay your direct support worker.  It has taken me a very long time to make the move. I had meetings after meetings – it has been difficult.  My advice to people with a disability, their parents and families is to never give up! It is worth it in the end to keep fighting and get what you want in life.

I have a good circle of support that has helped me make this happen.  I want this to happen for other people, not just myself-  If I can make the move then other people can make the move also.  Sometimes family don’t want people to move from services and live a life of their own choice.  You have to keep fighting for what you want, and not what other people want you to do.

In life it’s your choice that matters.

Author Bio

Paul Alford is a staff member at Inclusion Ireland and a self-advocate. His focus is on independent living and decision-making for people with disabilities.