Introduction to Aberlour - A Scottish Charity for Scotland’s Children
Aberlour is the largest children’s charity working solely in Scotland with over 47 services providing a range of community and residential care and support for vulnerable and disadvantaged children, young people and families. In the last year we have worked intensively with over 1200 children and offered informal advice and support to a further 5000 children and young people through 47 services across Scotland.
Our services currently offer:
• Intensive supports to severely disabled children and young people, many of whom have profound communication and behavioural difficulties
• Residential and outreach support to families affected by drugs and alcohol
• A range of community and family centre based services to promote and enhance positive parenting, play, early learning and social skills with vulnerable families and young children
• Residential care and community programmes for children and young people with social, educational, emotional and behavioural difficulties.
• Drop-in advice, information and counselling services for teenage children and young adults on issues affecting them
• An outreach service and refuge for children who are at risk of running away or who have runaway from home and need a safe place to stay.
As well as providing services; many in partnership with other agencies and organisations, Aberlour is committed to influencing Scottish policy and practice to create positive changes that benefit children, young people and families. Through membership of national and local working groups, coalitions and alliances we are able to do this and also ensure that our voice, and that of our service users, is heard.
Basis of this response
The comments below, which refer to the numbered paragraphs in the guidance, are based on Aberlour’s extensive experience of providing services for children affected by disability, many providing respite care and short breaks for them and their families.
We have contributed to the collective response submitted by Christopher Whelan on behalf of the Respite and Short Break Consortium, hosted by the Scottish Society for Autism, which covers some of the broader issues and concerns and therefore have not included these in this response. We would however wish to reiterate the need to move away from the term ‘respite’ and instead use the terms ‘short breaks’ and ‘breaks from caring’
Specific Comments
Paragraph 9
While we fully agree with the statement regarding ‘shifting the balance of care towards preventative support and enabling self care’ this does require early assessments of what is required and additional resources put into appropriate services. We are all too aware from our experience of waiting lists throughout services of the difficulty in providing services at an early stage due to lack of resources
Paragraph 12 We very much welcome the point made here. There is a very real and pressing need to address transitions from children to adult services as there is a major gap at this stage and service users need to have greater involvement in the planning and reviewing of all aspects of service provision.
Paragraph 16 There does need to be greater co-operation between NHS Boards and local authorities with regular dialogue between them but other service providers such as the voluntary sector also need to be involved in strategic planning given the substantial experience and services they can offer
Paragraph 21 We would suggest that the voluntary and not-for-profit sector should be mentioned along with local authorities as providers of services, as well as equipment.
Paragraph 23 We fully agree that it is important for people to have access to emergency short breaks however this can be difficult to provide when there are insufficient full-time services available that have the capacity to accommodate emergency short breaks. As with other aspects of the guidance, resourcing of services will be a key issue to be considered.
Paragraph 24 Many of our parents/carers are looking for a traditional model of short breaks provided in specialist residential care homes specifically designed and developed for such breaks. We do agree however that there is the requirement for a wide variety of alternative and flexible options, offering choice.
Paragraph 26 The need for a range of flexible short break services needs to be reiterated and we agree that this should be central to local strategic planning. However, we mustn’t “throw the baby out with the bath water” and there is a continued need in certain areas for specialist residential provision and day care services.
Paragraph 28 We fully agree that information is important. However, keeping up-to-date comprehensive and accessible information can be difficult and strategic planning needs to include mechanisms and processes which enable this to happen.
Paragraph 31 Assessment is extremely important and must be an ongoing process so the care package can be adapted and changed where necessary to meet the care recipient’s needs. This requires more resources in terms of local authorities being able to undertake the assessment process either through their own services or other providers such as the voluntary sector.
Annex A
Indicators of Good Respite Care – we would wish the following to be added
• appropriate to the needs and circumstances of the carer and person receiving the service
• flexible
• reflect choice
• responsive
• quality experience for the care recipient
• free for children and families
Annex B Personalised Respite and examples of good practice:
Breaks in care homes:
We would strongly argue that residential short breaks should only be in specialist residential facility, not in residential care homes.
Community based activities for adults:
Community based activities are invaluable to children and young people as well as adults and therefore this section should make reference to this.
Breaks for young carers:
We suggest that reference should be made to the need for more young carers support groups and activities specific for them and other siblings. In addition, we would recommend that more research is required into the number of young carers as we believe there is a larger number than presently suggested.
Breaks at home:
We agree that breaks at home are valuable and the preferred respite option for many people. However, there are issues in relation to ensuring the wellbeing of both user and staff within this situation. Clarity is required in terms of employment, legislation, place of work and health & safety – e.g. is there correct moving and handling equipment available.
Day Care:
We agree that day care should be considered if, as the guidance suggests, the service is designed to deliver this outcome and meets the needs of the care recipient and carer. Outreach support can offer a similar service if designed appropriately. Providing appropriate leisure based activities can often meet the needs of care recipient and carer.
Annex C Respite needs of specific groups:
Although it is assumed that children are included in the generic term ‘people’ we suggest it maybe worth highlight this at the start of this section.
Adults living with older parents:
Short breaks can similarly be ‘especially valuable’ for children living with older parents/carers and young people in transition to adulthood.
Other issues to be included We would like to see greater emphasis on information to children, the need for them to have choices and for their views and wishes being listened to regarding short breaks.
In addition there needs to be reference to the need for transport to be recognised and provided for children, young people and adults to access short breaks, especially for living in rural areas. This includes the need for school transport to be more flexible to accommodate children’s access to short breaks.
Finally we would wish to highlight that following through on the guidance does require adequate resourcing and funding which at the moment is very patchy. The long waiting lists for services are evidence of the lack of services for some of the most vulnerable members of our society.
We hope that the above comments are helpful. If you require further clarification about any of the points raised or would like to know more about the range of services Aberlour provide please do not hesitate to contact Aberlour Head Office. 36 Park Terrace, Stirling, FK8 2JR