Families and improvement in Intellectual Disability

What are the possibilities for people with intellectual disabilities and family members being involved in the design and development of intellectual disability services into the future? Richard Jackson, Lecturer in Intellectual Disability Nursing in Dublin City University

  • People need to be part of the decisions that affect their daily lives
  • These decisions form their services, their place and standard of living
  • Positive research methods are used to see what’s right with a service
  • They also help in looking forward to ways of improving it further
  • Representation for people with disabilities along with services and administrators help them to decide how their services will be delivered.

I have a real interest in services for people with intellectual disabilities growing into their full potential. Over the last while I have been asking the following question: What if an intellectual disability service could find a way to capture all of the voices involved in it and were able to represent every person’s opinion in its overall mission and strategy?  What would be the benefit of doing this? In the television program Who Wants to be a Millionaire, the “audience” are more often right in answering a question than the “phone a friend” who is supposedly the expert (Surowiecki 2005). If there is some truth in this, then out of all the people involved in one intellectual disability service, the majority of them do know the right way to move that service forward. If we could only find a way to capture all of this information then perhaps we would run our services closer to their potential.

I ran a project with a service in Ireland a few years ago, to help them develop a strategic plan that would run in their service for the following four years. About eighty percent of the people involved with that service (people with intellectual disabilities, family members, frontline staff, managers, therapists and volunteers), chose to take part in the project. The CEO and I developed a space where everyone was equal and the CEO was brave enough to be only one voice among 59 others. Over a period of one year we ran two sets of group discussions and two full-day workshops that led to eight clear goals for the future development of that service.  It was a fun year and it was really satisfying to view the final product, a thirty page strategic plan in easy read, the culmination of the input of 60 people.

We used a method called Appreciative Inquiry which is both a research method and an organisational development method. Instead of finding out what was wrong with the service, the Appreciative Inquiry process encouraged us to focus on what was right with it (Reed 2007). We recognised that the service did have its problems, however for this exercise, we would consider what was working. The reason for this was that when the “cream came to the top”, we could use this information to help us focus on building the future of the service. In Appreciative Inquiry there are five stages. The first stage is to engage with each other;  a service has the potential to change if people talk to each other, respect each other, learn to appreciate each other and agree to work together to find a better future for the service (Lewis, Passmore and Cantore 2008).

The next four stages make up the actual Appreciative Inquiry process: Discovery, Dream, Design and Destiny (Cooperrider, Whitney and Stavros 2008). Firstly, as has already been mentioned, in Discovery we explored what was good about the service; what was working and the stories from people as to their happiest moments in being part of the service. The second stage was to Dream; for people to share what they really desired for the future as well as their understanding of the future potential of the service. This was done in small groups as part of a day-long workshop. Each small group produced a piece of art work of their “Dream”, and then proceeded to share it with the whole group. During the third stage, Design, we made a bridge from the Dream into reality. This was not with pessimism or with the all-too-often stories as to why dreams can not happen. In another full day workshop, we explored “How can we do this?” “What can we do to make this ‘Dream’ happen”? This was an opportunity to explore bringing people’s insights and desires into the future. From Dream and Design we analysed the information gathered and produced a draft report in an ordinary Word document and Easy Read Versions so that all the participants could evaluate it. In the Destiny session, the final small group discussions, everyone took part in the groups they represented (families, frontline employees etc.). This was to make sure that each group of people involved in the project were happy with the goals we had drafted together and that each person could have their final say before the CEO and I finalised the strategic plan with the Board of Management.

There is much more that I would like to write about Appreciative Inquiry. I believe that it is a research method and organisational development tool that has the potential to be of benefit to many of our intellectual disability services in many situations into the future. However I want to focus this article on service development and the role that I believe people with intellectual disabilities and their family members have to play in building the future of our services.

It is interesting to note that there is very little written on the development of intellectual disability services. One article shows how service administrators in Sweden leave change to the professionals and never focus on changing service structures to create changes that people need (Erikson 2015). This leaves professionals limited in what they can initiate. Service culture, service design, organisational development, the integration of national policy into services and developing infrastructure for social inclusion, are rarely researched (Shoegran 2013); and yet these are all essential building blocks in moving our services forward. The absence of written information on all of these areas perhaps shows that something fundamental in our services requires addressing.

At the end of the day, people with intellectual disabilities themselves and their family members need to be able to make choices, together, in equal partnership with employees and managers, as to the shape and combination of services they want into the future. If the voice of people with intellectual disabilities as a whole group (with all of its diversity), was loud and clear in any service and if parent support/lobby groups had a clear independent voice, this I believe would ultimately change the dynamics in how our services are run. Understanding fully what stakeholders are saying in each service could help in making decisions as to where a service should focus its energies and resources into the future.

Developing an equal partnership with representatives from people with intellectual disabilities and family members can have a number of benefits. They bring with them their own expertise that balances the expertise of professionals and administrators. More face-to-face contact with stakeholders helps administrators and managers feel more accountable about the services that they provide (Antaki and Crompton 2015). Perhaps the ways we spend budgets in services could change if all major financial decisions are open, transparent and are under the keen eye of the most important two stakeholders; people with intellectual disabilities and family members. The best example of this working that I have come across was in the Midlands in the UK where in one local area, all people with intellectual disabilities were eligible to vote representatives into a local Parliament. Local council and service administrators had to go to the Parliament if they were making a decision that was going to affect the lives of people with intellectual disabilities, to justify the changes being made. This was a very creative intervention and showed a well-functioning intellectual disability democracy (Dearden-Philips and Fountain 2005).

The largest UK example of people with intellectual disabilities and families being involved in service decision-making was the setting up of Learning Disability Partnership Boards. Representatives of people with intellectual disabilities and family members take part in meetings with council administrators and service managers to agree on local policies and on how intellectual disabilities funding will be spent. Some local councils are very innovative (which you will find on the internet), however there is still a consensus that these boards tend to be tokenistic (Riddington 2008, Riddington 2012, and Fyson & Fox 2014).  Rather than to allow people with intellectual disabilities and their family members be involved in partnership in making the core policy and financial decisions into the future, councillors and administrators allow both groups make presentations, share information and offer their opinions, which amounts to tokenism.

Arnstein’s ladder (you can find a representation of it on Google Images) is a ladder of stakeholder participation in public services. There are eight steps to the ladder: The bottom two steps of the ladder are informing people with intellectual disabilities and their family members or telling them what is happening. This means the stakeholders get no power (Maier 2001). The next three rungs are various forms of tokenism, where services involve people with intellectual disabilities and their family members, however only to get their perspectives and practical information; the service administrators and professionals still make the final decisions. My experience of many services in Ireland is that they work in a tokenistic way with their two most important stakeholders.

I am suggesting that services in Ireland move to the highest three points of Arnstein’s ladder where partnership and real citizen power can take place. Where representative citizens (people with intellectual disabilities) who receive services, and their family members, can participate in an equal way in the decision-making as to how their services will operate into the future. Article 29 of the 2008 United Nations Convention on the Rights for People with Disabilities says that people with disabilities have the right to take part fully in political and public life on an equal basis with others. Surely this needs to start with people with intellectual disabilities being fully involved in the decisions made about the services created for them. Any person with intellectual disabilities or family member that gives their time to work with managers to develop services will of course require good training and expenses being paid (Given and Slevin 2011). I believe that by taking a step to achieve this, services are moving beyond advocacy – advocacy, perhaps in part, is a form of tokenism.

In Ireland during the last decade intellectual disability services have become more complex. We now have both the Congregated Settings Report (HSE 2011) and the Value for Money Report (Department of Health 2013). These documents as well as the government commitment to ratify the 2008 United Nations Convention on the rights of people with disabilities over the next two years,  sets the direction for the development of individualised services that are developing through various “supported living” models around the country.

The HSE in 2008 delivered two documents; one that set the direction for the involvement of stakeholders in the policy making and the design of services, and another to deliver service change. All of this is creating a political environment for service development, something that some Intellectual Disability Services struggle with. From my observations, to simplify what is occurring in services in Ireland, perhaps there are three types of services developing:

  1. A few services and agencies are committed to only providing individualised services, usually through the “supported living” model;
  2. Many services are in transition from the traditional residential and day service models to a greater community orientation with some “supported living” projects occurring;
  3. Some services are more committed to providing the traditional residential and day service models, rather than developing different forms of individualised services, albeit that they are finding ways to provide more community houses.

With this significant change occurring in services since the year 2000, I believe that as well as people with intellectual disabilities and family members attaining more power within their lives through “supported living” models of care, they also fundamentally need to have representation in intellectual disability services as they seek to develop their potential.  This means embracing people with intellectual disabilities and family members in the:

  • Design and decision making of services and agencies as they increase “supported living” capacity
  • Design and decision making of services currently in transition from “group orientated models” to “supported living” models and a greater focus on community integration
  • Design and decision making of the more traditional services, having influence on how those services should develop into the future.

It is really important to develop the democratic procedures necessary to do this, carefully, so that the needs of people, such as those with profound intellectual disabilities and those with behaviour issues, do have representation in any decision making processes about service provisions into the future. As we develop our services into the future we need to break from a tradition where administrators, managers and HSE representatives design services, to developing a model where the stakeholder’s representatives are involved in equal partnership with managers and administrators in designing the future of the services that at the end of the day are about them.

I cannot resist a final word on Appreciative Inquiry to produce a wider context to the ideas I have written about. It is a method that can represent all of the views of the myriad of people involved in a service.  Appreciative inquiry is a tool that has a positive focus (Whitney 1998). Simple procedures have been developed that allow a group to have conversations on the things that matter (Lewis, Passmore and Cantore 2008).  It allows a group to think about the potential of any service and the desires of all its members (Reed et al. 2002). As an inquiry develops people are encouraged to be creative, and to empower each other to make a difference in the service they work in, live in, attend weekly, or have an interest in their family member’s well-being. Appreciative Inquiry is about taking responsibility for the things we can control within services, opens up new ways of seeing things and new ways to take action on things (Bushe 2011). It is a tool that opens up the potential for the development of our services in a way where consensus can be developed from all of its members. Although the project that I did was in a small service, Appreciative Inquiry pioneers and some present practitioners have managed projects that have involved hundreds of people. Appreciative Inquiry however is not a panacea (Reed 2007), it is a useful tool that when used well, can release more of the potential and creative energy in intellectual disability services to function in more ways that people with intellectual disabilities and family members  would like them to.  My hope for the next fifteen years is that services will find innovative ways to develop partnership with their key stakeholders and to engage in organisational development projects with them. One practical way to do this is to use tools such as Appreciative Inquiry to facilitate this process.


A special thanks to my PhD supervisor Dr. Melrona Kirrane; to the sixty people who participated in the project and Professor David Coghlan who has generously given of his time to me on a number of occasions.



Antaki, C. and Crompton, R.J. 2015. Conversational Practices: Promoting a discourse of agency for adults with intellectual disabilities. Discourse and Society. 26(6), pp. 645-661.

Bushe, G.R. 2011. Appreciative Inquiry: Theory and Critque. In Boje, D. Barnes, B. and Hassard, J. The Routledge Companion to Organisational Change pp. 87-103. Oxford: Routledge.

Cooperrider, D.L., Whitney, D. and Stavros, J. 2008. Appreciative Inquiry Handbook 2nd Ed. Ohio: Berret-Koehler Publishers.

Dearden-Philips, C. and Fountain R. 2005. Real Power? An examination of the involvement of people with learning difficulties in strategic service development in Cambridgeshire. British Journal of Learning Disabilities, 33, pp. 200-204.

Department of Health 2001. Valuing People a New strategy for Learning Disability in the 21st Century (online). Available from: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/250877/5086.pdf

Department of Health 2013. Value for Money and Policy Review of Disability Services in Ireland (online). Available from: http://health.gov.ie/wpcontent/uploads/2014/03/VFM_Disability_Services_Programme_2012.pdf

Dowse, L. 2009. Some people are never going to be able to do that. Challenges for people with intellectual disability in the 21st Century. Disability and Society, 24(5), pp. 571-584.

Erikson, S. 2014.  The need for imagination: Personal Budgeting and the management of Disability Services in Finland. Journal of Policy and Practice in Intellectual Disabilities, 11(2), pp. 137-148.

Fyson, R. and Fox, l. 2014. Inclusion of Outcomes? Tensions in the involvement of people with intellectual disabilities in strategic planning. Disability and Society 29(2), pp.239-254.

Given, J and Slevin, E. 2011. Being Heard: aiding Public Participation in Decision Making. Learning Disability Practice, 14(8), pp. 26-30.

Goble, C. 1999. “Like the secret service here Isn’t it.” People with leaning difficulties. Perceptions of staff and services: Mystification and Disempowerment. Disability and Society 14(4), pp449-461.

HSE 2008. National Strategy for Service User Involvement in the Irish Health Service 2008-2013 (online). Available from:  https://www.hse.ie/eng/services/publications/Your_Service,_Your_Say_Consumer_Affairs/Strategy/Service_User_Involvement.pdf

HSE 2008. Improving our services. A Users Guide to Managing Change in the Health Service Executive (online). Available from:  https://www.hse.ie/eng/staff/Resources/hrstrategiesreports/Improving_our_Services,_A_Guide_to_Managing_Change_in_the_the_HSE_-_Oct_2008.pdf

HSE 2011. Time to move on from congregated settings A Strategy for Community Inclusion (online). Available from: https://www.hse.ie/eng/services/list/4/disability/congregatedsettings/congregatedsettingsreportfinal.pdf

Lewis, S., Passmore, J. and Cantore, S. 2008. Appreciative Inquiry for Change Management. London: Kogan Page.

Lotan, C and Ells, G. 2010. Adults with Intellectual and Developmental Disabilities Participation in Decision Making: Ethical Decisions for Professional-Client Practice. Intellectual and Developmental Disabilities 48(2), pp. 112-125.

Maier, K. 2001. Citizen participation in planning: Climbing a ladder? European Planning Studies. 9(6), pp. 707-719.

Mittler, P. 2015. The UN Convention on the rights of people with disabilities: Implementing a Paradigm Shift. Journal of Policy and Practice in Intellectual Disabilities, 12 (2), pp. 79-89.

Oakes, P. 2012. Assessment of Learning Disability:  A History. Learning Disability Practice, 15 (1), pp: 12-16.

Redworth, C. and Philips, G. 1997. Involving People with Learning Disabilities in Community Care Planning. British Journal of Learning Disabilities, 25, pp: 31-35.

Reed, J., Pearson, P., Douglas, B., Swinburne, S. and Wilding, H. 2002. Going home from hospital – an appreciative inquiry study. Health and Social Care in the Community. 10 (1), pp: 36-35.

Reed, J. 2007. Appreciative Inquiry Research for Change. London: Sage.

Reed, J., Cook, G., Bolter, V. and Douglas, B. 2008. Older people involved in policy and planning: Factors which support engagement. Journal of Ageing Studies, 22, pp. 273-281.

Riddington, C. Mansell, J. and Beadle Brown, J. 2008. Are Partnership Boards Really Valuing People? Disability and Society, 23 (6), pp. 649-645.

Riddington, C. 2012. 10 years of partnership. Tizard Learning Disability Review 17(1), pp. 14-21.

Shoegran 2013. A Social-Ecological analysis of the Self-Determination Literature. Intellectual and Developmental Disabilities, 51(6), pp. 496-511.

Surowiecki 2005. The Wisdom of Crowds. U.S.A: Detroit Free Press.

Trajkovski, S., Schmied, V., Vickers, M. and Jackson, D. 2012. Implementing the 4D cycle of appreciative inquiry in health care: a methodological review. Journal of Advanced Nursing. Jan pp. 1224-1234

Tritter, J. Q.  and McCallum, A., The Snakes and Ladders of Service User Involvement: Moving Beyond Arnstein. Health Policy. 76, pp. 156-168.

Whitney, D. and Schau, C. 1998. Appreciative Inquiry an Innovative Process for Organisation Change. Employment Relations Today. Spring pp. 11-28.

15-richard-jackson-photoRichard Jackson is a Lecturer in Intellectual Disability Nursing, at the Department of Nursing and Human Sciences, Dublin City University.