Dissatisfaction with services-older parents of people who have a learning disability

1. Dissatisfaction with services-older parents of people who have a learning disability Deborah Davys University of Salford

2. Background to the study • Part of MA Gerontology • Concerned with older parents of people who have a learning disability and their concerns for the future • Qualitative study using phenomenological perspective and semi-structured interviews

3. Aim of the study • Provide an insight into the perceptions of older parents of learning disabled people with regard to their future accommodation needs

4. Rationale for the study • Older parents of adults who have a learning disability are considered to be a neglected area of research • People with learning disabilities living longer and now outliving parents • National dependence upon older parents and families of learning disabled people to provide support and accommodation • Clinical experience in the field

5. Issues for parents of learning disabled people from the literature • Extended carer role • Risk of double devaluation on account of age and association with learning disability • Dealing with usual physical, psychological and social impacts of ageing • Concern about the future

6. Historical background • Early 1900`s The Mental Deficiency Act 1913 • Removal, incarceration, segregation in self-sufficient colonies • 1950`s growth of the human and civil rights movements • 1971 White Paper Better Services for the Mentally Handicapped • The NHS and Community Care Act 1990 • 2001 White Paper Valuing People

7. Literature demonstrating tensions between parents / carers/professionals • Shearn and Todd (1997) parents feel service providers judge them negatively and do not consider the practicalities of their suggestions • Jackson (2000) parents are accused on being over protective and cautions • Thompson (2001) older parents feel alienated and that their needs and wishes are ignored • Gregory and Smith (2004) parents continue to view their overall interaction with service providers as unsatisfactory

8. Participants • Ethical approval granted • Older parents on a social service database sent a flyer on the study and were invited to take part • Four couples participated out of a possible 83 households • One parent in each pair was at least 65 years old • Each couple had one adult with a learning disability living in the family home

9. Method of study • Phenomenological perspective taken – concerned with views and opinions of older parents and their experience of the phenomena • Semi-structured interviews using guiding questions that were related to the research aims • All interviews were audio-taped, key points were jotted down and read back to the interviewee at the end to check for verification

10. Analysis • All audio-tapes were transcribed verbatum • Step-by step method as suggested by Burnard (1991) • Emergent themes were put into main categories • Categories were further refined after discussion with research supervisor

11. Key themes generated: • Dissatisfaction with services • Sibling issues • Financial issues

12. Most dominant theme – dissatisfaction with services • This theme arose in all interviews and was raised the greatest number of times. • Parents feel angry towards service providers • Parents feel they have to fight to get what they want • Parents do not trust service providers • Parents feel that what is provided is not what they want • Parents see themselves and service providers as being on opposing sides

13. Participant quotes • (3) “..we had to fight tooth, hammer and nail to get what we wanted...we still need to fight and fight..” • (4) “I said I didn`t really want an extension because (son) would be sleeping downstairs and we would be upstairs, and at the time he was waking up and we had to get up every night to see to him...but she (OT) said that was the only answer..”

14. Participant quotes • “...they think we are a load of hassle and we are a load of hassle because we do complain and we do complain at the right place and they certainly find out what it is that we are thinking about..” • “..they say well people like (son) should be allowed to do things on his own without recourse to you (parents), ..to make his own decisions, now if we went along with that theory...it is just not suitable”.

15. Discussion • This dissatisfaction with services supports the views of tensions between service providers and parents as expressed by Jackson (2002) relating to trust and Burke (2001) who claims that parents are often considered by service providers as over-protective and maintain their offspring in a child-like state.

16. Limitations of the study: • Small sample size • Difficulty in generalising the results • Cross sectional and provides only 1snap shot of parents views and opinions • Subjectivity of analysis • Participants from a white English ethnic background

17. Future work and implications for OT • Need awareness of the issues of anxiety, anger and distrust that may be present when working with older families about futures planning • Parents may wish to maintain a significant role in futures planning • Need active engagement and collaboration with family members in futures planning and a client-centred approach.

18. Future work and implications for OT continued • Need to be aware of and sensitive to family history and background • Futures planning needs to start early – is a long process and requires much building of trust • Need to consider where person with LD will live, finances, usual and preferred lifestyle, guardianship issues. • Cross agency working and education • Support such as counselling, advice and information provided to parents / carers

19. Future research arising from this study: • Adult siblings of people who have a learning disability – concerns and plans for the future and the impact of parents upon planning process.

20. References: • Burnard, P. (1991) A Method of Analysing Interview Transcripts in Qualitative Research. Nurse Education Today.11: pp461-466. • Burke, C., Chenoweth, L. and Newman, M. (2001) “Lost in a Crowd” Issues Confronting Adults with Intellectual Disabilities and their Ageing Family Members. Geriaction.19(4):pp10-15. • DoH(2001b) Valuing People: a new strategy for learning disability for the 21st century. London: The Stationary Office • Gregory, C. and Smith, M.S. (2004) Predictors of the Stage of Residential Planning Among Ageing Families of Adults With Severe Mental Illness. Psychiatric Services. Vol. 55, No. 7, pp804-810.

21. Jackson, R. (2000) Bound to Care: An Anthology: Family Experiences of Mental Handicap. In Tait, T. and Genders, N. (Eds) Caring for People with Learning Disabilities (2002) London: Arnold, pp92-106. • Shearn, J. and Todd, S. (1997) Parental Work: An Account of the Day-to-day Activities of Parents of Adults with Learning Disabilities. Journal of Intellectual Disability Research. Vol. 41,part4,pp285-301. • Thompson, D. (2001) Futures Planning for People with Learning Disabilities Living with Older Family Carers. Managing Community Care. Vol.9, 2,pp3-6.