The article describes an innovative, person-centred service provided to families who had a child or teenager with severe learning (intellectual) disabilities. It was delivered in three areas within Northern Ireland: two urban and one rural. The service promoted the social inclusion of young people in volunteer-run community activities, based around a person-centred plan developed with the child’s family. A three-year formative evaluation of the service was undertaken (2006—2008) via interviews and focus groups with parents (N = 48), young people (N = I9), volunteers (N = 7), community workers (N = 4) and referring social services staff (N = 14). The service was successfully implemented in all three areas. In particular, it helped parents to clarify their individual support needs and engaged their child in ordinary community activities. The distinctive features of the service and the changed ethos it represents are discussed.
Black, L.A., Roberts, P. & McConkey, R. ( 2008) ‘"Lifelines": An Evaluation of the Impact of the Families Services Delivered by Positive Futures in Rural and Urban Areas of Northern Ireland’. http://www.positive-futures.net/publications.asp .
2.
Brown, R.I., MacAdam-Crisp, J., Wang, M. & Iarocci, G. ( 2006) ‘Family Quality of Life When There Is a Child with a Developmental Disability’, Journal of Policy and Practice in Intellectual Disabilities, 3: 238-45.
3.
Chadwick, O., Beecham, J., Piroth, N., Bernard, S. & Taylor, E. ( 2002) ‘Respite Care of Children with Severe Intellectual Disability and Their Families: Who Needs It? Who Receives It?’, Child and Adolescent Mental Health, 7: 66-72.
4.
Curtice, L. ( 2003) ‘Developing Local Area Co-ordination in Scotland: Supporting Individuals and Families in Their Own Communities’, Tizard Learning Disability Review, 8: 38-44.
5.
Department of Health (2001) Valuing People: A New Strategy for Learning Disability for the 2Ist Century . London: Stationery Office .
6.
Dowling, S., Manthorpe, J. & Cowley, S. ( 2006) Person-Centred Planning in Social Care: A Scoping Review . York: Joseph Rowntree Foundation .
7.
Emerson, E. ( 2003) ‘Mothers of Children and Adolescents with Intellectual Disability: Social and Economic Situation, Mental Health Status, and the Self-Assessed Social and Psychological Impact of the Child’s Difficulties’, Journal of Intellectual Disability Research, 47: 385-9.
8.
Emerson, E. & Hatton, C. ( 2007) ‘The Mental Health of Children and Adolescents with Intellectual Disabilities in Britain’, British Journal of Psychiatry, 191: 493-9.
9.
Holmes, L., McDermid, S. & Sempik, J. ( 2010) The Costs of Short Break Provision. Research Report DCSF-RR224 . London: Department for Children, Schools and Families.
10.
King, S., Teplicky, R., King, G. & Rosenbaum, P. ( 2004) ‘Family-Centered Service for Children with Cerebral Palsy and Their Families: A Review of the Literature’, Seminars in Pediatric Neurology, II: 78-86.
11.
Law, M., Teplicky, R., King, S., King, G., Kertoy, M., Rosenbaum, P. & Burke-Gaffney, J. ( 2005) ‘Family-Centred Service: Moving Ideas into Practice’ , Child: Care, Health and Development, 31: 633-42.
12.
Lishner, D.M., Richardson, M. & Levine, P.(I996) ‘Access to Primary Health Care among Persons with Disabilities in Rural Areas: A Summary of the Literature’, The Journal of Rural Health, 12: 45-53.
13.
McConkey, R. ( 2005) ‘Fair Shares? Supporting Families Caring for Adult Persons with Intellectual Disabilities’, Journal of Intellectual Disability Research, 49: 600-12.
14.
McConkey, R. & Adams, L. ( 2000) ‘Matching Short-Break Services for Children with Learning Disabilities to Family Needs and Preferences’, Child: Care, Health and Development, 26: 429-44.
15.
McConkey, R. & Collins, S. ( 2010) ‘Promoting Social Inclusion through Building Bridges and Bonds’, in M. Nind & J. Seale (eds), Understanding and Promoting Access for People with Learning Difficulties: Seeing the Opportunities and Challenges of Risk. Abingdon: Routledge .
16.
McConkey, R., Truesdale-Kennedy, M., Chang, M.-Y., Jarrah, S. & Shukri, R. ( 2008) ‘The Impact on Mothers of Bringing up a Child with Intellectual Disabilities: A Cross-Cultural Study’, International Journal of Nursing Studies, 45: 65-74.
17.
Mansell, J. & Beadle-Brown, J. ( 2004) ‘Person-Centred Planning or Person-Centred Action? Policy and Practice in Intellectual Disability Services’, Journal of Applied Research in Intellectual Disabilities, 17: I-9.
18.
Nisra (2005) Northern Ireland Multiple Deprivation Measure. Belfast: Northern Ireland Statistics And Research Agency.
19.
Office of First and Deputy First Minister ( 2006) Our Children and Young People: Our Pledge. A Ten Year Strategy for Children and Young People in Northern Ireland 2006-20I6. Belfast: NI Executive.
20.
Pecora, P., Mark, W., Nelson, K.E., McCroskey, J. & Meezan, W. ( 1995) Evaluating Family-Based Services. New York: Aldine de Gruyter.
21.
Redmond, B. & Richardson V. ( 2003) ‘Just Getting On With It: Exploring the Service Needs of Mothers Who Care for Young Children with Severe/Profound and Life-Threatening Intellectual Disability’, Journal of Applied Research in Intellectual Disabilities, 16: 205-18.
22.
Robertson, J., Emerson, E., Hatton, C., Elliott, J., McIntosh, B., Swift, P. et al. (2007) ‘Person-Centred Planning: Factors Associated with Successful Outcomes for People with Intellectual Disabilities’ , Journal of Intellectual Disability Research, 51: 232-43.
23.
Robinson, C. & Stalker, K.(I993) ‘Patterns of Provision in Respite Care and the Children Act’ , British Journal of Social Work, 23: 45-63.
24.
Sanderson, H. ( 2000) Person-Centred Planning: Key Features and Approaches . York: Joseph Rowntree Foundation .
25.
Sarason, I.G. & Sarason, B.R. ( 1985) Social Support:Theory, Research and Application . Dordrecht: Martinus Nijhoff .
26.
Sloper, P. ( 2004) ‘Facilitators and Barriers for Co-ordinated Multi-Agency Services’, Child: Care, Health, and Development , 30: 571-80.
27.
Stalker, K., Malloch, M., Barry, M. & Watson, J. ( 2007) Evaluation of the Implementation of Local Area Co-ordination in Scotland. Edinburgh: Scottish Executive.
28.
Truesdale-Kennedy, M., McConkey, R., Ferguson, P. & Roberts, P. ( 2006) ‘An Evaluation of a Family-Centred Support Service for Children with a Significant Learning Disability’, Child Care in Practice, 12: 377-90.
29.
Webster, A.A. & Carter, M. ( 2007) ‘Social Relationships and Friendships of Children with Developmental Disabilities: Implications for Inclusive Settings . A Systematic Review’, Journal of Intellectual & Developmental Disability , 32: 200-13.
