Background: The life expectancies of people with intellectual disabilities are significantly increasing with many more people now living with their older family carers. There are more adults with intellectual disabilities living today with family carers in Northern Ireland (NI) compared to the rest of the UK, a pattern that will continue: not planning for the future is not an option anymore. Many of these older family carers are female and are lone carers. This brings additional burdens as both the person with intellectual disabilities and their carer(s) have to manage the effects of the ageing process together. However, there comes a time when family carers cannot continue to provide care for their relative with intellectual disabilities as a result of illness or death, therefore other arrangements are required. The absence of adequate future plans and support systems can lead to crises, social isolation and emotional trauma for all concerned, inappropriate placement and unexpected dilemmas for siblings or extended families.Future Planning training programmes: There are two international training programmes that work directly with family carers to support them to develop a future plan (‘The Future is Now’ & ‘Safe & Secure’). Both these programmes focus on similar areas (i.e. exploring the barriers and enablers to developing a future plan, circles of support, housing options, financial security, making a future plan, etc.). However, these programmes are solely dependent on the family carer’s attendance at the training programme and his/her proactive development of the different aspects of the future plan with minimal or no support from front-line staff who do not receive any information on the barriers and enablers to future planning. Therefore, those family carers not at the contemplation stage will not start to begin to plan for the future, and many carers may not complete a future plan given the number of individual, family and organisational barriers they may face in their journey. Aim of study: A recent study in N Ireland reported that many family carers would like to make future plans if front-line staff can support them sensitively and are able to provide them with the correct information, emotional support and signposts to the appropriate personnel (Taggart et al., 2012). This Knowledge Transfer grant allowed the research team to develop 1) a training manual with resources (including a CD) and 2) a two-day training programme both the training manual and the workshop together trained staff to act as facilitators thereby supporting family carers to explore the barriers and enablers and develop a future plan. The training manual was developed as a stand-alone resource and the two-day training programme was an additional support for staff to develop their knowledge, skills and confidence to approach family carers to support them to develop a future plan. The training manual and two-day training programme enabled staff to support a wider number of family carers to develop a future plan: thereby creating greater sustainability than the two earlier programmes. Methodology: The training manual and the two-day training programme were developed, and were piloted twice and amendments made. The two-day training programme was then delivered on fifteen occasions across N Ireland from March–Sept 2014: all participants who attended the workshops received the training manual. The titles of the six sessions of the training programme were: Exploring your own Future Plan; Circles of Support, Person Centred Planning and Emergency Planning; Signposting Housing and Support Options; Making Sound financial and Legal Decisions; Direct Payments and Supporting a Family Carer to Make a Future Plan. The two-day training programme was delivered by a member of the University and supported by input from members of the NI Housing Executive (NIHE), staff from the Centre of Independent Living NI (CILNI) and two solicitors who specialise in working with people assess as lacking capacity to make decisions. At least one family carer who had completed or was in the process of completing a future plan was present to speak with staff highlighting the barriers and enablers to developing a future plan over the course of the two-days. All staff were asked to complete a written evaluation sheet at the end of the workshop. Two focus groups were held with seventeen staff several months after they had received the training. Results: In total 215 staff attended the two-day training programme delivered fifteen times across N Ireland. The majority of participants reported that the training manual (incl. resources and CD) was very useful, had the appropriate information with references and websites for further information, and contained localised information regarding housing, care providers, finding a solicitor, direct payments and writing a future plan.. The resources, exercises and information leaflets were also reported to be helpful in explaining what a future plan was with the family carers and adults with intellectual disabilities. The majority of staff also reported that the two-day training programme increased their knowledge, confidence and skills in approaching families to explore the option of developing a future plan. The additional input from the three external speakers and the family carers were again highly evaluated by the staff. Some staff reported that raising the topic of future planning with family carers may raise ‘unrealistic expectations’ in terms of housing and may also increase family carers anxieties further. Staff reported a number of organisational barriers in terms of putting the training into practice; these related to ‘workload’, ‘prioritisation’ and ‘whose responsibility it is to approach family carers to support them to develop a future plan’. Conclusion: Exploring housing options, financial security and future care have the potential to reassure family carers that an agreed plan, in other words security, has been developed and will be put into place when family carers can no longer provide care. Both the training manual and two-day training programme have the potential to alleviate the on-going anxiety and stress that many family carers experience in the decades they provide caring to their relative with intellectual disabilities. The majority of the staff reported that the training manual and the two-day training programme were very helpful in improving their knowledge and skills, and increasing their confidence to approach family carers about developing a future plan. However, organisational difficulties were reported by these staff to implement the training from the two-day programme. Despite the benefits reported of the manual and the training, of over 200 staff from the statutory and voluntary/charitable sector organisations across N Ireland, it appears that there are significant challenges for front-line staff to implement the training in terms of developing future plans with family carers.
|Number of pages||36|
|Publication status||Published - 1 Mar 2015|
- intellectual disability
- future planning