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DESSA

DESSA

Disability Equality Specialist Support Agency

Findings from the Research

Research Methodology

Staff found the roundtable discussions extremely useful as a medium of exchange of information and personal experiences. In the course of the evaluation the research team met with some participants and some staff in Raphoe, Donegal, in Galway and in the Limerick area. The meetings were invaluable in revealing the richness and diversity of the Steps to Mainstreaming Participation Framework for such developments.

 

Programme Design

The evaluation identified a number of issues in the course of the research with the programme design and delivery. Concepts such as ‘advocacy’, ‘mentoring’ and ‘community development’ were sometimes used interchangeably in the Steps Framework when implemented at local level. Promoters and funders, however, were very clear on the important distinctions between the terms.

 

The evaluation team felt that following review, the programme design would need reassessing and further consideration in the future. Measures of success for the programme were not outlined to the research team. Through researching course curriculum, this was still unclear and the only evidence provided of how a participant would have reached completion of the programme was related to a Steps to Mainstreaming Participation Framework chart, which indicated social and economic capacity. No clear operational guidelines were offered on the programme. This would need to be addressed further in future programmes.

 

A number of limitations were identified in the aims of the Step Forward Programme such as, the use of the term ‘training’ instead of more suitable words, like information or skills. In relation to Programme design some projects saw themselves as fulfilling a gap while others saw the Programme as an opportunity for direct and immediate participation of people with disabilities in the area.

 

Participants mentioned that information in disability rights circulating informally in neighbourhoods can be incorrect:

 

The information provided (informally) for people with disabilities is poor and incorrect. Hospital FRC provides an accessible resource centre (for information). (DESSA meeting Limerick)

 

The management group in the FRC see the disability group as essential to their centre. Training for the disability group is 5 to 7 hours per week. At present the group meet every second week in the year apart from July and August. (Hospital Family Resource Centre, Co Limerick)

 

For the Funders, there was an interest in the Programme being both inclusive and very person centred.

 

In the words of a funder:
We have a large customer base but there are particular groups who are not accessing the Family Resource Centres. The FRCs are aware that funding is available for services. They are becoming more inclusive and are engaged in applications for funding and the needs of people with disabilities. We are attempting to take away the cloak of invisibility of people with disabilities and to emphasise that people with disabilities are part of the community.

 

A second funder stressed the need for the Programme to have an individualised or person centred approach and that the qualitiative nature of the evaluation should therefore help to capture the richness of the experience.

 

Planning and organisation

Both Programme staff and participants felt that it was imperative for participants to be included in the planning stages of the programme. It was reported that the types of disability predominant in the group had a huge impact on the type of activities preferred to be included. It is worth noting that the Programme never intended that any particular category of disability would be a determining focus of group membership, on the contrary, the Programme hoped to bring together participants who, up to now, may only have contact with a single service provider.

 

Two persons with a disability were members of the planning group and had an input to the delivery of a programme in Limerick. (Discussion with Our Lady of Lourdes CDP)

 

In Hospital Family Resource Centre, the programme is attended by a group of people with acquired disabilities. For them concepts such as empowerment, capacity building and lobbying skills were important as well, as offering confidence and support to live at home independently. Other topics and courses included in projects included opportunities for skills acquisition and further education through computer /training and literacy.

 

We initially expected about 18 on the course based on the CSO figures for the area – but we got nobody from the immediate area. We would like the Department (of Social and Family Affairs) to use their database – the HSE will write to people on their database.11 The Department could take their lead and write to people they have on their database informing them of the programme. Our own advertising doesn’t seem to get to the people.

 

We did a questionnaire and went door-to-door with it. We got a good response, however we found that people didn’t have the time to fill out the questionnaire at the door. We didn’t get to know the people at the door – there wasn’t enough time. We knocked on doors after six in the evening. (Local Programme co-ordinator)

 

Participants from Galway tried different methods of promoting the Programme:

 

Organisation is the biggest thing - you have to know what’s going on. I would keep it (size of courses) small.

 

The service providers can be a good way to get information out – I mentioned this programme to the social worker but she didn’t seem too interested… the social worker didn’t want to know.

 

Some participants experienced difficulty in the Programme arrangements:

 

We didn’t know the course times from week to week and the times changed from week-to-week. We were not given the programme in advance and we only got the times on the actual day. Step 2 is now completed. In the future we would need the days, dates and times fixed in advance. (Parent of young man with a disability from a rural area of County Galway).

 

Others stressed the atmosphere and systems of communication between participants and Programme coordinators:

 

There should be a good atmosphere in the place – have the premises bright – the ambiance of the place is important. It’s nice to come into a bright room.

 

I can’t use computer/email but it would be good – text messaging is good…We need broadband – a lot of Co. Galway is on the edge of broadband access – the signal is very bad. If you are two miles outside of Loughrea the service is very bad – pockets of the county have no access to broadband.

 

None of the Making Choices group has access to email!

 

The local TD doesn’t have broadband in his office in Galway – I was in the Serengeti in Tanzania and there was better access to broadband than there is in rural west of Ireland (Participants at Galway Roundtable Discussion)

 

Curriculum development

Getting the right match between the content of Programmes and participant wishes was an issue for Galway groups according to staff:
We started a ten-week programme with a very independent group who decided what they wanted to do. They decided they wanted to do computer programming and stress management – wanted to be able to deal with everyday situations. The Stress Management course ended up being modified – and they started
to do art work (Galway Roundtable).


The course was interspersed with relaxation therapies and many of the participants preferred that to the learning element of the course, which included issues such as ‘Know Your Rights’. Most wanted to come back for the relaxation classes rather than the knowledge part of the course... many did not feel confident
in the knowledge class (Galway Roundtable)

 

In Donegal, some participants stressed more the way you learn rather than what you learn. The group has been running for two years.

 

One participant said that:
In the two years (I) have learned a lot personally. Couldn’t have been done in one. It takes time for things to sink in. In the group (I) feel all are equal. In the time spent in the group, others don’t talk over you and include you. Difficulty in education in the past. Can catch up on skills and education in the group (Discussion group
with Steps to Mainstreaming Participants in Raphoe, Donegal)

 

Delivery of programme

The delivery of each of the programmes was different in each area. The reasons for this can be attributed to a number of factors including the background of participants for example, whether they had acquired a disability, the type of disability of each of the participants attending, funding available, the level of resources available, the delivery techniques of facilitators.

 

Although the Programme has been described as flexible to adapt to each group of participants and the project setting, the core objectives of the Steps Framework were sometimes disconnected from the delivery and outcomes of projects. It was felt that to maintain the programme as an effective mainstreaming tool, some consistency is needed in its roll out in projects.

 

For some staff a main priority was involvement of participants and their needs or additional skills required. Staff in Hospital FRC, felt that it was important for people with disabilities to have an opportunity to coordinate the sessions. In a number of projects participants were not involved in the planning stages of the programmes. As a result, their preferences were not included or explored. The inclusion of the ‘medical model’ versus ‘social model’ of disability in the programme delivery was viewed as extremely beneficial by both staff and participants. Staff were not familiar with these concepts.

 

One staff member commented on the delivery and facilitation of the programme by a person with a disability. The staff member described this as a genuine example of achievement by a person with a disability. This facilitator was commended for presenting leadership and motivational skills.

 

Some staff members described the length of each session as too long especially for those who were venturing outside of their own homes into local community programmes for the first time.

 

At the beginning 20 participants attended the workshop. This fell to eight participants by the end of the programme. Mostly men dropped out and it was felt the most common reason for drop out was the radical shift experienced by participants, many of who did not leave their house before, to sitting around in a circle in the middle of the floor. Activities such as drama were also a huge influence on the numbers who dropped out. No input from the participants was asked for in the planning of the workshop. Other reasons for drop out included personal issues, others felt they had moved on and outgrown the group. Some participants felt that the drama was often not suitable and excluded certain individuals. (Telephone conversation, Hospital Family Resource Centre).

 

Aonad Resource Centre felt that participants of the programme preferred sessions focussed on day to day experiences, rather than those delivered on the importance of the ‘social model’ or drama sessions. The majority of participants in the group of nine participants have mental health difficulties and felt that sessions on therapy, stress management and relaxation were more enjoyable than those on academic issues. For these, facilitators were hired from Mayo, Galway and Sligo. Modules that have been included in various programmes include art, woodwork, lobbying skills, computer training, literacy, gardening, aromatherapy and drama.

 

A high level of administration to run the programme is required according to some staff members they found having a point of contact to refer to with questions regarding the funding application forms and programme useful. In a Limerick region a collaboration of two CDPs and one FRC had proved successful in reaching out to people with disabilities in their respective areas while job sharing the administration tasks of the programme.

 

A programme coordinator found the charges of one facilitator quite expensive. She found the administrative work considerable such as recruitment, getting a suitable room, and funding, tutors and module material – it involved a ‘lot of work.’

 

Programme aims versus programme outcomes

One staff member described the programme as particularly good value for money as it ‘opened a floodgate of needs’ of people with disabilities in the local area. Programme participants and project staff, where the group had moved onto to forming two or more groups, viewed operating on a step-by-step framework as essential.

 

Staff felt that the topic of concern on which the framework is based, is a slow process and staff were unable to estimate how long such groups should be funded for. Examples of outcomes from the programmes which addressed social inclusion and participation were used to illustrate this point such as forming their own committees or chairing meetings, confidence building, support to living at home independently for those with an acquired disability, awareness training, successful local community lobbying campaigns and update of skills.


In Southill, a programme participant is now the Chair of a Disability Awareness group in the area. Two programme groups organised a successful lobbying campaign on the use of footpaths: Na Calai CDP and Hospital FRC. Two participants of the East Clare CDP moved on to further education, while a further two got jobs.

 

In the majority of projects, a follow up or second follow up programme was underway, or applications were awaiting approval. The costs applied for and received for these varied considerably from the original programme for different reasons:

 

  • Projects were currently in the process of the Steps Framework having originally run the Making Choices Programme and from this the Step Forward Programme.
  • Projects had gone one step further in delivering an Advocacy Programme - a third related programme for participants.
  • In Abbeyfeale, the West Limerick CDP hosts a second group called the Look Forward group, which is made up of 11 participants from the original group of 13.

 

One of the aims of the programme outlined in material supplied to the research team, indicated that the programme would facilitate members to explore their identity and transform issues to a national level. From meeting with the participants and staff involved with the programme, it would seem that this would be an unrealistic short-term goal, based on what the programme has achieved to date and the preferences of participants.

 

It would be more advisable that this could be done through DESSA under its current remit and objectives. Following meetings with each of the participating projects DESSA could be informed of the issues affecting people with disabilities in local communities. Policy reform is a complex national process and should not be a goal for the programme participants.

 

In terms of administration, the research team were unable to report from data on how many participants went through the Programme. In future, the research team would envisage that appropriate record keeping be maintained and measures of the social inclusion process or outcomes for individuals.

 

A computer and literacy programme has been set up and started this week. It will run for seven weeks at a time. The first course will have four of the original participants of the DESSA programme attending. To date, a further four have expressed interest in signing up for the second course…

 

Politics would be another area for courses to be organised particularly in terms of voting and rights. Successful examples of effective lobbying skills are the appointment of a former participant as Chair of the Disability Awareness Group. (Conversation with staff, Southill Limerick)

 

Attended a one-day workshop on disability awareness with Peter. Felt it was refreshing, different and was excited afterwards – wanted to spread knowledge around. In comparison, left other training after one year, as ethos was wrong. Ethos in Peter’s training was on equality and providing a level playing field. Staff person reported that she felt it all ‘made sense’ afterwards. No lecturing involved but message was put across. Was sceptical at first but after Peter’s training felt the ‘penny dropped’ – ‘I get it now.’ (Staff Limerick Discussion)

 

Before one day training Deirdre felt she was ‘brainwashed by the medical model.’ Deirdre worked in an organisation previously which claimed to be person-centred but after training realised it was not. (Staff, Limerick discussion).

 

Question needs to be asked of what group would do with what they now know. They feel that they should use their learning – if not the programme should no longer be run. (Staff discussion Limerick)

 

Participants in the Limerick region were very appreciative of learning about the ‘social model’ of disability services. In comparison, the medical model is negative and has a religious aspect. Attitude of gratefulness and thank God to be alive. After training come away with disability second to me being a person, said one attendee.

 

M. from Southill CDP received two days training. Afterwards felt she had a ‘clear vision of the social model… Religion was generally core to disability. For example on a recent trip to Lourdes, M. read through the excursion plans for a group attending, some with disabilities. For those with a disability, activities were based in Mass or in the church, for others social activities were planned. Felt people never stopped to think. (DESSA meeting in Limerick)

 

One participant went on to enter the employment market; one participant is now a Chair of a meeting group. They found it useful to combine the resources of other FRCs and CDPs to form the Disability Awareness Group. Before that, Anne stated it was a struggle. The working group formed from the Steps group now meet on a regular basis and find this coordinated approach useful to meet and discuss disability and other issues. (Telephone discussion, Our Lady of Lourdes CDP, Limerick).

 

A former DESSA coordinator wondered how well the Steps to Mainstreaming Programme would work, were it not for the Community Development approach. She felt that there could be: too much rigidity in ‘goal’ orientation outside CD centres –CD offers a process to address or find a home for capacity gap (Email to research team)

 

Participants – (men and women in a rural area) with very different disabilities were able to put words on their own personal experiences with Steps to Mainstreaming and described the positive outcomes clearly as follows:

Listened to more and feel that your point of view is taken up

Enjoy standing up for yourself

People listen to you - We feel that people with no disability don’t listen

Next step – go out and not be afraid to speak up and get point across

Feel a big improvement – not feeling like I make a show of myself

Express yourself – confidence to take part and join in

Helpful learning – help each other and be there to help each other, not afraid to ask
(Discussion group with Steps to Mainstreaming Participants Framework in Raphoe, Donegal)

 

The remarks of participants highlight the importance of careful and slow support to individuals who are isolated and have lacked confidence to make their opinions or themselves known in the past.

 

Concern with isolation

The Steps to Mainstreaming Participation Framework reaches out to very isolated families in rural townlands (outside Raphoe), villages/towns (Hospital) and housing estates (Southill parishes). The initiative is effectively reaching out successfully to the hard-to-reach – a task that can be undertaken effectively by local groups and fulfils a social inclusion mandate.

 

For many participants in Limerick and Raphoe, their outing to the FRC or other facilitated group was the only social outing of the week. Some participants in Raphoe described a sense of ‘belonging’ to a group or being ‘like a family’.

 

Bríd Lyons (Southill FRC) works with the Making Choices group. The main obstacle as she saw it, was trying to get people to take part in the programme. Isolation is a huge problem in the city area. There is little involvement of people in community groups with certain disabilities such as those who are blind or wheelchair users.

 

Without the support of my husband and family I would live alone and feel sorry for myself.

 

Pauline (participant Hospital FRC) is a carer for her husband at home. He has difficulties in terms of access to buildings – I don’t go out too much’ … I only go to the group. (DESSA discussion in Limerick)

 

Motto is: If community can’t come to us we’ll go out to them. (Meeting with Tony McDaid, Raphoe Family Resource Centre)

 

For many others attending the group, they face a lack of support at home or in care and they come here and think it’s the bees knees. (Meeting with Paul Fagan Facilitator of Steps to Mainstreaming Framework in Raphoe, Donegal)

 

Isolation was identified by a DESSA Board member, and in particular isolation, for example in urban housing estates and not just rural areas. The Programme can be viewed as an important footbridge into the mainstream by individuals who otherwise would have little to no contact with personal development, services, resources or information provision.

 

Slow pace of acquisition of participation

Facilitators remarked that progress in participation and participative learning takes one to two years based on one day per week sessions of intensive activity and trust building. This slow pace differentiates the programme from other Family Resource Centre initiatives. Despite the slow pace, it appears appropriate to fund activities based on a step-by-step process.

 

A DESSA Board member agreed that there was a need for a slow pace of delivery and an approach that recognises that time is needed to achieve development, for example 3-5 years of funding as in the case of Adult Day Services. (DESSA Board discussion)

 

Funding

Funding was cited by projects as an obstacle to becoming involved in the Steps to Mainstreaming Participation Framework. Many staff members stated that facilitation costs were especially high. It was one of the largest percentages of the overall funding received to run the Programme. All participants and staff included in the evaluation estimated that funding needed to run such programmes in the future has increased. This was estimated for all parts of the country, particularly Dublin. Nevertheless, most staff and facilitators expressed no specific views on expanded funding and regarded cultural and attitude changes and transport as significant issues.

 

Many centres had resorted to using local facilitators for part of programme to keep costs down. The facilitators were knowledgeable in a specialised area and fulfilled the groups’ requests on programme content. In Southill, the use of local facilitators was beneficial as they had an understanding of Community Development in the local area.

 

Southside Disability Awareness Group had extra costs in hiring a room in a hotel for the sessions, as no alternative was available to them in their areas for the original Making Choices programme.

 

In addition, sources of funding for programmes varied for the type of programme rolled out in each centre. Although the majority of programmes sourced their funding from the Department of Social and Family Affairs, in Hospital FRC, Limerick, funding was received from Combat Poverty for the Making Choices Programme. In another instance funding was received for the first Making Choices Programme from the Department of Social and Family Affairs, while funding for the second was received from the local Vocational Education Committee. This added to confusion for staff members but is actually consistent with a multi-agency approach to delivery.

 

The estimated level of funding reported as received by each project for their first Programme included in the evaluation is presented in Table 9 below.

 

Table 9 - Estimate of funding received by each project

Project Funding Received
Raphoe 11,516 €11,516
West Limerick €5,000
Hospital €2,500
Southside Disability Awareness Group:
Southill
Southill
Our Lady of Lourdes
€5,000
Ballybane €4,768
Na Calai €4,295
Aonad €7,000
Sligo Northside €4,300
Cosgallen €3,500
Loughrea Not known
East Clare Not known
Tuam CDP graduates Not known

Source: Interviews and roundtable discussions with staff of projects for evaluation.

 

Second funding applications for follow up programmes were adjusted according to additional costs not foreseen in the first application, such as reasonable accommodations and transport. For others the funding applications were adjusted to account for change in numbers participating in the programme. Table 10 shows some of the main costs included in application forms.

 

Table 10 - Breakdown of funding costs in application forms

Costs  
Transport  
Reasonable accommodations

General

Sign Language Interpreters

Personal Assistants

Facilitation  
Travel expenses of facilitators  
Hiring rooms  
Day trips  
Materials and supplies for activities  

Source: Interviews and roundtable discussions with staff of projects for evaluation.

 

For many staff the application process for funding was described as troublesome. The choices of funders for first and subsequent funding varied for many projects and inexperience led to many staff not rationalising the correct amount of funding for each costing. In some instances funding was granted to projects in anticipation of higher numbers attending the group. In one instance the amount of funding exceeded the numbers of participants due to delivery of what was perceived as a similar programme in the area for people with disabilities.

 

These teething issues appear to be getting ironed out. Members of the Board of DESSA stressed that competition between groups should not be fostered and if cost sharing is possible across groups, then that is a good thing. (Meeting with DESSA Board)

 

Reasonable accommodations

Costs to run each programme were more expensive than first anticipated by the CDPs and FRCs. For example, Hospital FRC made an original application for 2,000 from Combat Poverty for the Making Choices Programme, however, this figure was later increased to 2,500 due to increased transport and travel costs.

 

One example of extra costs in the Raphoe Family Resource Centre was the cost of a Personal Assistant for a woman who attends the monthly management committee meeting. Costs for PAs are built into funding applications. This ensures the participation of the disabled person at meetings.

 

Staff interviewed as part of the evaluation felt that it was important for those co-ordinating each programme not to have to ask participants to put their own hands into their pockets.


A participant from Ballybane in Galway (a RAPID area) who is one of several Deaf persons, has been able to engage in a social participation programme thanks to the provision of an Irish Sign Language Interpreter. (Galway Roundtable)

 

No standard of care exists – different accommodations received – creates conflict. Important for people with disabilities to meet and talk about access to services and entitlement to benefits – addresses powerlessness and ensures information is spread. (DESSA meeting in Limerick)

 

We would like to have known that we could get a Deaf (ISL) interpreter – we could have advertised this then. (Galway Roundtable)

 

It would appear that projects need to be advised in advance to research and locate with the help of Citizen Information Centres, or more experienced projects, as well as with people with disabilities, the types of accommodations they should envisage.

 

Day Services

A small number of Steps participants were attending a Day Service in the local area. For example in Raphoe, three of the ten original participants were attending a Day Service. Two further participants were living, and are still living, as residents in a community home. A staff member of the Aonad Family Resource Centre stated that two Day Services in the area were contacted to recruit participants.

 

Whether such a programme is delivered in conjunction with other local community initiatives or day services in the future…was a subject raised by the DESSA Board.

 

The HSE has appointed a Working Party to review Day Services for people with disabilities. The Report of their work is due for publication during 2009. This may provide a framework for consideration of joint support to the Programme.

 

Reasons for withdrawal from programmes

Reasons for withdrawal from programmes included:

  • Participants feeling they had ‘moved on’ from the group
  • Lack of suitable or accessible transport
  • Take up of job or course
  • Describing the length of sessions as too long or intensive
  • Dislike of drama used in sessions – felt that it was too much of a change from what they were used to at home
  • Preference to social rather than learning aspect of the course
  • Long term sickness or personal health concerns

Of the group of 13, which started out in the Steps Programme, 10 stayed to receive certificates for completion. (Meeting with Tony McDaid, Raphoe Family Resource Centre)

 

It started with seven people and there is now five in the group – one has gone to another course and another had a transport issue. The individual concerned lived in Loughrea and was unable to secure funding for transport – the course costs were covered for two days a week but because the computer course was on a Friday which was an additional day they weren’t covered for transport costs. Transport was working out at €90 per day. (Staff Galway Roundtable)

 

‘There is an issue re costs – we put a ceiling on the numbers this year – there was a missed opportunity as some people haven’t come back to the project. (Galway roundtable)

 

Future Programme promoters might consider recruiting slightly more participants to the Programme to allow for the retention rates or holding open days for users to see if they would like to enrol.

 

Staying rate of participants

Eight participants participated in the course in Hospital FRC and each of these participants has returned for follow up programmes.

 

Reasons why participants stayed to complete the programme included:

  • Viewing the sessions as a social outing
  • Receiving information
  • Opportunity to share personal experiences
  • Social skills
  • Confidence building
  • Empowerment building
  • Capacity building skills
  • Holistic therapies
  • Friendships made
  • Payment of top-up assistance

The Hospital FRC experience shows that the programme can meet a very wide variety of needs and interests which can be incorporated into the experience.

 

Transport

Transport is a major consideration in rural townlands, towns and villages for all residents and equally for people with a disability. Access to suitable and reasonably priced accommodations is a difficulty in all locations. It was generally agreed that access to transport is more difficult to obtain in rural areas, but this applies to everyone and not just people with disabilities. One staff member described transport in the Western region of Ireland as ‘disjointed’. For many participants who wished to travel to the roundtable discussions, transport was claimed to be their main obstacle.

 

Transport is a major obstacle for people with disabilities to link in with other groups, for example those linked in with Hospital FRC. This is useful to spark motivation among participants. B. described the meeting as great mentally and physically. Funding for taxis needs to be addressed he thought: funding directly affects participation. (Limerick)

 

Transport and access to information are two of the main difficulties for people with disabilities. (DESSA meeting in Limerick)

 

Raphoe is poorly serviced by public transport and local buses are not all wheelchair accessible. (Meeting with Tony McDaid, Raphoe Family Resource Centre)

 

P. reported: Transport is so disjointed – particularly if the mother and father are working it is difficult to co-ordinate times and transport. It can be difficult to get to a place at a certain time of the day with people working at different times. (Galway roundtable)

 

We would also like to have known that we could get funding for a bus. (Galway roundtable)

 

In Galway Brian said: It’s a shorter journey time in the car – on the bus you have to go through every area. You leave at 8.30 on the bus and get there at 10. If you’re in the car it only takes 40 minutes.

 

His mother: If we weren’t able to bring Brian ourselves he couldn’t get to the course. (Galway roundtable)

 

Top-up payments

Top-up funding was received from the Department of Social and Family Affairs for some participants attending the programme and not for others. This was described as a major obstacle in two projects, Hospital FRC and Sligo FRC. This obstacle was described by one staff member as a reason for the group to be divided as some were receiving assistance with travel expenses and others were not. In one instance participants received the additional funding for the first programme, however, when they applied the second time their application was rejected and as a result, it was reported, the participants no longer continued with the programme.

 

The DSFA will pay about 20 a week to each claimant of an Allowance who participates in these programmes. This is a welcome recognition of the ‘costs of disability’. However, those who have no claim with the Department get nothing. Among those with no claims are married women with disabilities. A solution here is either for the 20 to be factored into budgets or for non-claimants to make claims for nominal amounts such as 10 a week, which can then be ‘topped- up’. Staff from some projects were not up to date on this topic.

 

Awareness raising for staff

Staff in Limerick, especially Hospital and Southill, indicated the importance of distinguishing between the medical model of service delivery by both state and charitable bodies and the social or rights-based model. They described this as the single most important piece of knowledge obtained from the courses. Staff in Raphoe applied the results of the presence of the Disability group within their (adapted) building to other actions within the project such as co-operation with other bodies in the area, changes in management board and understanding of social inclusion as applying to people with disabilities and getting their agenda onto the FRC agenda.

 

The Limerick participants and staff emphasised the prevalence of inaccurate and misleading (word of mouth) information on the working disregard, the disability pension versus adult dependent allowance, and the entitlement to VRT waiver on cars for people with or without limbs. The mixed messages fostered suspicion in neighbourhoods that some who had obtained benefits did so by favouritism or special arrangements rather than by right, even when this was not the case.

 

A Galway family found that their son with an intellectual disability got more out of his one day a week with the Programme than the four days a week with a local Day Service. They had asked his Day Service to cooperate with the programme.

 

Disability and age discrimination

Limerick participants expressed very strong views and opinions about the removal of social services for people with disabilities at the age of 65. They felt ‘affronted’ when told they could no longer have a PA (by HSE) or that services were reserved for those ready to take up employment. Those with a physical or sensory disability are moved onto the Intellectual Disability Database once they reach the age of 65 according to a Limerick staff person. This affects the level of supports available to persons who once received them through the Physical and Sensory Database.

 

Participant B. reported: I was told I was too old for a scanner (Blind participant). Once you reach 65, you are offered the choice of buying it with a 25% discount.

 

Another example cited was of a woman who was on a list for seven years to receive equipment and once she reached the age of 65 was told that she was no longer qualified to avail of the service.

 

This would ‘turn you off’ applying in the future. Another person agreed but stated that that they thought this kind of behaviour was the idea behind it so that the person would just give up.

 

Noreen, participant from Hospital FRC felt that people in the area have a ‘fear’ of service providers. CIB advocacy programme in the area supports people to address issues. ‘The Database change crept up on those over 65.’ (DESSA meeting in Limerick )

 

The group agreed that there might be conceptions passed from one area to another on access and entitlement to services and supports and they might not be true. (DESSA Board)

 

The use of volunteers

The use of volunteers to support the programme was uncommon. Typical reasons for this included politics and lack of awareness of disability issues in the area. Staff felt that volunteers would be useful to cut back on costs such as hiring bus drivers. In Southill a buddying system has been set up in the community and allows young people in the area without a disability to familiarise themselves with a group member.

 

It could be an opportunity missed not to test the opportunity for volunteers in the communities to offer their services on a short-term, short time basis.

 

Programmes in existence in the area
Some Family Resource Centres and Community Projects are in touch with or interact with many other local area projects, networks, partnerships, cooperatives, associations and groups. This reflects a rich and important feature of civil society at grassroots level. Connecting the Programme with some of these groups is worth pursuing, bearing in mind that some attempts at this were rebuffed by other groups or agencies. Prior to the establishment of a Programme, it is worth verifying that there is no equivalent action in the area or measures that would be viewed as duplicate, even where this is not the case.

 

Unanticipated findings

Participants of the Steps programme in Raphoe reported that a number of them had a second role at home of caring for family members. Some participants who live at home are also carers, sometimes the only carer to family members, such as an elderly mother with MS who cannot get out of bed or a father with Parkinson’s disease. Some participants are in families where two adult men are impaired or three adult sisters have learning difficulties in one family. The review also noted a close relationship between absolute poverty in the family and the presence of a person disability.