This qualitative research study took place across six local areas in Wales, and examines the experiences of families’ seeking accommodation for their adult sons/daughters with learning disabilities. Acknowledging that often several years might pass while families start to consider the issue, this research was intentionally focused on the experiences of families once a decision has been made to pursue a move on from home.

Methods

The researchers involved in the study used a semi-structured interview with open questioning, and coded the transcripts manually. The thematic analysis approach enabled the researchers to find and group themes without prior expectations; and the article describes a range of measures taken to improve validity and reliability (re-readings, second readers, re-examining raw data for disagreements).

However only two interview transcripts were analysed by a second reader and it may have been preferable for all nine to have been, given the small number of transcripts overall.

Results

The results are grouped into two main types of themes:

1. the original reasons for seeking a move on from home
2. the subsequent (often lengthy and stressful) experiences.

Sadly, a clear theme reflected was that services do not provide what families require in terms of timely, individualised responses to support people to move on. Even at an earlier stage when seeking information – for example parents’ needing a contact person to help navigate the information maze. One parent reflected that this may be an idealistic hope and while advice and information and proactive planning is now built into statute in the Care Act (in England) and via Education, Health & Care Plans and Local Offer information (England and Wales); it remains to be seen whether in practice this meets families’ needs adequately and consistently.

Generally, families found progress to be very slow with a frequent lack of understanding or prioritising of their son/daughters’ particular needs. Housing law and duties can be in conflict with this group’s needs for a planned move to something very specific where housing and support combine to make a successful life and home for a person with learning disability.

I would have liked the article to have included more information about how agencies work within Wales to better understand the structural context surrounding the families.

Families were aware that their situations may not be top priorities for councils as they are currently providing a home and support and are unlikely to be in crisis. However some had begun to experience a decrease in their ability to care, as well as the desire to balance their lives as carers with other family commitments or pursue their own interests.

Conclusions

Despite housing for people with learning disabilities being clearly recognised as a need within Government policy in recent years (Valuing People 2001; Valuing People Now 2009) the families in the study “experienced a mismatch between rights and reality” (p.9, Grey et al 2015).

I personally felt very disappointed that their experience of services was so frustrating and resulted in distrust.

The article could create a general impression of families being somewhat passive, as parents have made efforts to progress things but are described as “waiting for that decision to be enacted by services” (p.3 Grey et al, 2015). This will understandably be true in many cases as carers are busy people and should expect good help from statutory services – but may not be reflective of the range of situations, as there are great examples of families initiating arrangements around their relative e.g. buying a house, setting up a circle of support; although admittedly this often results from the lack of action by services.

Strengths and Limitations

I found this a very interesting area of study and the article was well written, the emergent themes well summarised, and illustrated with some powerful quotes from families.

This research study had a very small cohort of nine people with learning disabilities, eight of whom were in their 20s or younger, with one 38 year-old; and all were White British. While this did not mean the families were a homogenous group in terms of experience, it probably limits our ability to apply the themes more widely to other families.

For example, many people with learning disabilities are older themselves when they move on from home, with older parents/carers which may mean reasons for seeking a move differ; and reciprocity of care and interdependence feature more as themes within people’s experiences (these issues are examined by Gant, 2010 and Gilbert et al, 2008).

A wider range of participant families may have enriched the research and made findings more applicable to other areas and populations within Britain and beyond.

Only one father was interviewed despite all the participating families being two-parent families. It was not clear why and I wondered if the study could have pursued this and been proactive about involving some more fathers, as their roles and perspectives have remained fairly invisible in this research, although they are increasingly included in many other studies (Lewis & Lamb, 2007).

This research has stated at the outset that it is the experiences of families that are being investigated, so my expectation was that a whole-family approach would be taken, to include the adult with learning disability and perhaps any siblings too. However parents/carers are the main focus of the interviews. Some of the parents/carers included discussion about their son/daughters’ own views, but overall there was very little voice of the young people with disabilities and this was a noticeable gap in the overall narrative and themes of the families’ stories.

I found the language of the article title – “adult child” – difficult, and think that son/daughter would be a preferable terminology for the people involved. Later the article categorises reasons for the move as parent or ‘child’ factors, although the youngest person in the study was 18 years old.

For most adults with learning disabilities, success in their housing situation is inextricably linked to the right support, but arranging support and obtaining the necessary funding is not mentioned here.

This is not a new issue with recent austerity measures, there has always been some thought and effort needed to tie up support and housing elements together in a timely way.

Summary

The authors suggest that larger scale/further research is needed to explore families’ difficulties, but while this would be interesting, it is probably unnecessary as we know much of what is not working well and increasingly we have some good examples of successful outcomes for people.

The Housing & Support Alliance, Golden Lane Housing and our own Government documents (for example Valuing People) have been clear about barriers and efforts needed to address the issues for people with learning disabilities and some solutions are offered (see the Housing Options Commissioning toolkit).

The article is invaluable as a powerful reminder of the perspective of families’ when trying to support their sons/daughters with an expected life transition, but we do not need to wait for more research to concentrate on improving people’s experiences.

What we can take from the article is that most parents/carers want and need to be partners with agencies in making sure that a move on from home is positive and timely for their adult son/daughter with learning disabilities.

Links

Primary paper

Grey, J.M., Griffith, G.M., Totsika, V. & Hastings, R.P. Families’ Experiences of Seeking Out-of-Home Accommodation for Their Adult Child With an Intellectual Disability in Journal of Policy and Practice in Intellectual Disabilities 12, 1, 47–57, [abstract]

Other references

Department of Health, Valuing People 2001; Accessed 9.8.15
Department of Health, Valuing People Now 2009; Accessed 9.8.15

Gant, V. 2010 Older Carers and Adults with Learning Disabilities: Stress and Reciprocal Care, in Mental Health and Learning Disabilities Research and Practice, 2010, 159-172; Accessed 9.8.15

Gilbert, A., Lankshear, G. & Petersen, A. 2008 Older family-carers’ views on the future accommodation needs of relatives who have an intellectual disability, in International Journal of Social Welfare, 17, 1, 54–64; Accessed 9.8.15 [abstract]

Website: Golden Lane Housing
Website: Housing & Support Alliance
Resource: Housing Options Commissioning Toolkit

Lewis, C. & M.E. Lamb, 2007 Understanding Fatherhood, Joseph Rowntree Foundation: York Accessed 9.8.15

Legislation: The Care Act 2014

The Children & Families Act 2014
SEND Code of Practice

Accessed 18.8.15 (includes Education, Health & Care Plans and Local Offer)