Housing and support
Our homes are important to us, not just because they give us a roof over our head; they are also a place where we feel safe and secure, where we can be ourself and rest.
People with a learning disability get older in many different places. The majority are growing older in the family home, many with ageing parents. Some people live in residential care, others in their own home with support coming in.
People’s housing and support needs can change as they age. Some people want to ‘age in place,’ that is stay in their home with adaptations and physical changes to their home depending on their needs. Others are happy to consider different housing options as their needs change. There are a range of different housing options for older people and with the growing use of technology people can be well supported to stay in their own home.
As well as considering physical changes and adaptations to a person’s home, it is important to consider their changing support needs as they age.
Bigby, C (2004) Ageing with a Lifelong Disability. A Guide to Practice, Program and Policy Issues for Human Services Professionals. London: Jessica Kingsley Publishers
Bigby, C (2010) A five country comparative review of accommodation support policies for older people with intellectual disabilities. Journal of Policy and Practice in Intellectual Disabilities, Vol. 7
Easterbrook, L (2008) Living on the Edge: Enabling Older Owner Occupiers with Moderate Learning Disabilities to Live Independently. Nottingham: Care and Repair England
LDAS (Learning Disability Alliance Scotland) (2010) Stuck 869. People with Learning Disabilities Resident in Care Homes for Older People in Scotland. Dalkeith: Learning Disability Alliance Scotland
Thompson, DJ, Ryrie, I and Wright, S (2004) People with intellectual disabilities living in generic residential services for older people in the UK. Journal of Applied Research In Intellectual Disabilities, Vol. 17, No. 2, pp. 101–107
Thompson, D and Wright, S (2001) Misplaced and Forgotten: People with Learning Disabilities in Residential Services for Older People. London: Mental Health Foundation
Bowers, BJ (2014) Supporting Older People with an Intellectual Disability to Age at Home: A Manual for Support Staff and Carers. Managers guide. http://bit.ly/1B030lU Bowers, BJ (2014) Supporting Older People with an Intellectual Disability to Age at Home: A Manual for Support Staff and Carers
Environmental changes to support people with learning disabilities and dementia. Aldingbourne Trust. Download article
Equality and Human Rights Commission (2011) Close to Home. An inquiry into older people and human rights in home care. http://bit.ly/1f18eAL
Evaluation Toolkit for Providers
An assessment tool and action plan, developed by ARC and Foundation for People with Learning Disabilities, for organisations to improve the quality of life for people with learning disabilities as they grow older. Download >
Higgins, L and Mansell, J (2009) Quality of life in group homes and older persons’ homes. British Journal of Learning Disabilities, Volume 37,Issue 3, September 2009, pp 207–212
Housing Learning and Improvement Network (2007) Pennine Court: Remodelling Sheltered Housing to Include Extra Care for People with Learning Disabilities. Fact Sheet 29. www.housinglin.org.uk
Housing Learning and Improvement Network (2004) Housing Options for Older People with Learning Disabilities. Fact Sheet 3. www.housinglin.org.uk
King, N (2001) Growing Older With Learning Disabilities: Using Parental Property To Provide Housing For Families And Advisors. London: Foundation For People With Learning Disabilities
SCIE (2014) Commissioning Home Care for Older People. SCIE Guide 54. http://bit.ly/1rwQVgg
SCIE TV (2014) Home Care: Commissioning for older people with complex needs. http://bit.ly/1nuKw3q
Wood, A and Hall, C Housing and Older People with Learning Disabilities. A factsheet. Housing and Support Alliance
The Alzheimer’s Society
This website provides details about a wide range of assistive technologies that are suitable for people with dementia but that could also be of potential use for older or frailer people with a learning disability http://bit.ly/1dw66yZ
HFT Smart House
An introduction to personalised technology in the home www.hftsmarthouse.org.uk
Information about assistive technology for people with dementia www.atdementia.org.uk
Organisations and web links
Association for Real Change http://arcuk.org.uk
Housing and Support Alliance www.housingandsupport.org.uk
Keyring Supported Living Networks www.keyring.org
Housing Learning and Improvement Network www.housinglin.org.uk
Shared Lives www.sharedlivesplus.org.uk
Working with Aspire Living
BILD has been working with Aspire Living a charity providing support for people with a learning disability in Herefordshire since February 2013. Aspire Living are developing a specialist residential home for older people with a learning disability in the Herefordshire town of Ross on Wye, they are keen for it to become a centre of excellence which other residential care homes can learn from.
Aspire Living have managed two bungalows in Markyes Close, Ross on Wye for many years, that are home to eight people with a learning disability all of whom are over fifty years of age. Over a 12-18 month period the organisation is re-developing the bungalows to create one new specialist unit for older people with a learning disability. Work started on the redevelopment of the bungalows in January 2013.
Judith Weir, Chief Executive of Aspire Living says “As people with learning disabilities are living longer they can very often end up being placed in generic older peoples' residential care homes which are not always able to meet their needs as the staff may not have had training in the specific requirements of learning disabilities, including means of communication. The developments at Markyes Close will hopefully go some way to addressing this need in the community”.
Aspire Living have asked BILD to work with them on the redevelopment of Markyes Close to provide information and advice on the service development, to evaluate the quality of the support provided and to disseminate information on the changes they are making in order to provide high quality support to older people with a learning disability. Regular bi monthly newsletters are being produced with Aspire detailing the changes that are happening to the buildings at Markyes Close as well as chronicling the lessons learnt, the hopes of the residents and staff and views of key partners. To download the newsletters click on the images below. As part of the project BILD is looking with the staff at Markyes Close at changes they are planning to the internal design of the new home to make it more suitable for older people with a learning disability including people with dementia, the use of assistive technology and a sensory room and their activities programme.
To find out more contact Gail Cooper at Aspire Living Gail.Cooper@aspirechoices.com and Lesley Barcham at BILD firstname.lastname@example.org
Click on the images to download the newsletters.
Real life stories
Research into adults' transition from the family home to alternative accommodation
Bethany Taylor, from the University of Sheffield, is currently undertaking a PhD in the area of ageing and learning disability; she is focusing on learning disabled adults' transition from the family home to alternative accommodation, a family experience becoming increasingly common in today's ageing population.
"Several years ago a work placement alongside disabled adults sensitized me to the uncertainty in the lives of families affected by learning disability, sparking my interest in this area of research.
The current generation of older people with a learning disability is the first to survive in considerable numbers to this stage of life (Walker and Ward, 2013).
Consistent with this increasing life expectancy, approximately one in three adults with a learning disability co-reside with and are cared for by a relative over the age of 70 years (Emerson and Hatton, 2008).
This exacerbates the pressure and uncertainty families face when considering their loved one’s future as it is unlikely that original care arrangements will be sustainable, an apprehension apparent within the literature. Furthermore, the increasing life expectancy of this population raises the issue of ‘inappropriate’ placement upon reaching this transition period and the extent to which the service sector satisfies this unique population’s support needs with respect to the modern principle of ‘active ageing’ (Buys et al, 2012).
Ensuring adults with a learning disability are appropriately placed when leaving the family home has become a government priority (DoH, 2001) and has been principled by key organisations such as the British Institute of Learning Disabilities.
My research aims to explore the experience of transition as co-residence ends among families whose circumstances are changing due to ageing, hoping to engage with those families which include an older primary carer family member and/or an older adult with learning disabilities. The research aims to gain insight into this phenomenon, often misinterpreted as a single event, but which can encompass a long-term pre-transition planning phase as well as a post-transition phase in which relationships are re-established in order to adapt to the new care arrangement.
I intend to map this delicate transition period from the family perspective, for instance, drawing upon the experiences of the adult with learning disabilities, their parent(s), sibling(s) and/or other significant relatives, recognising the fluidity of the support network as older generations become unable to maintain caring roles.
I wish to respect the emotive nature of this transition by adopting a flexible, constructivist approach, adapting to each family’s circumstances and also to the communication abilities of all those I meet. This reflects my intention to gain insight into individual experiences’ as well those of the family unit as a whole and to recognize the adult with a learning disability as an inclusive, contributing family member.
As developments in health and social care are expected to continue, those born today with a learning disability have the greatest chance of surviving into adulthood, signifying the growing relevance of this phenomenon (Falkingham et al, 2010). I hope that by providing insight into the transitional process from a family perspective that the project increases awareness of this under-researched area while emphasising the crucial role of family relationships which transcend beyond the termination of co-residence.
Buys, L, Aird, R and Miller, E (2012) Active Ageing Among Older Adults With lifelong intellectual disabilities: the role of familial and nonfamilial social networks. Families in Society: The Journal of Contemporary Social Services, 93 (1): 55-64
Department of Health (2001) Valuing People: A new strategy for learning disability. London: HMSO
Emerson, E and Hatton, C (2008) Estimating the Future Need for Adult Social Services for People with Learning Disabilities in England. Lancaster: Lancaster University Centre for Disability Research
Falkingham, J, Evandrou, M, McGowan, T, Bell, D and Bowes, A (2010) Demographic Issues, Projections and Trends: Older people with high support needs in the UK. York: Joseph Rowntree Foundation
Walker, C and Ward, C (2013) Growing older together: ageing and people with learning disabilities and their family carers. Tizard learning Disability Review, 18 (3): 112-119
For more information contact Bethany at email@example.com
Bethany Taylor (pictured)
A challenge for providers
Improving the quality of life for people with learning disabilities as they grow older: A Challenge for Providers
In 2013 ARC launched their first Real Change Challenge, titled The Real Change Challenge: Improving the quality of life for people with learning disabilities as they grow older: A Challenge for Providers, by Cally Ward Download >
The ARC Real Change Challenge is based on eight outcomes statements written in partnership with older people with a learning disability and their family members. They are based on “I statements” as used in the Think Local Act Personal, 'Making it Real' document, www.thinklocalactpersonal.org.uk
The eight statements are:
- I am supported by people who see the real me and know me well.
- I am involved in making the important decisions in my life.
- My health is maintained as I grow older.
- I feel safe and secure in my own home.
- I am still doing the activities that are important to me, and trying new things if I want to.
- I am still in contact with the people who are important to me – my family, my friends and the community I live in.
- I am well supported when the people that are important to me move away or die.
- I can celebrate my life and am coming to terms with my own approaching end of life.
Following the launch of the Real Change Challenge, ARC worked closely with the Foundation for People with Learning Disabilities to develop a practical toolkit for providers based on the eight outcomes.
Evaluation Toolkit for Providers. An assessment tool and action plan for organisations to improve the quality of life for people with learning disabilities as they grow older
This toolkit is flexible and can be used by a range of different providers to help them audit their provision and to encourage them to think about new and creative ways of providing good support to older people. Each of the eight sections has links to useful resources that can be downloaded.
Find out more and download the toolkit >
CIC Limited and Vibrance were two providers involved in piloting the Evaluation Toolkit for Providers. Read their stories about what they learnt below.
Christine Williams, quality improvement manager at CIC Limited, www.c-i-c.co.uk/ wrote about the changes that the organisation is making as a result of using the Evaluation Toolkit for Providers.
"Even though staff who work with people who live in Ashton House are person centred in their approach, when they were given the ARC toolkit to pilot, they were challenged and stimulated to recognise that the people who live there needed more age-appropriate activities.
This sent the team off on a lengthy search which eventually proved to be fruitful. They found a group in their community which had been set up for people who were over 60, with no other eligibility for joining the group other than the participants need to be over 60. The group is made up of a variety of individuals who live in the community. There is an annual fee to pay, but there are a plenty of different activities as a result. It is most definitely not a ‘day centre’ but is part of the local community.
Staff are preparing to work closely with the organisers to ensure that the potential new members are able to participate and feel comfortable.
The ARC tool sparked several excellent and robust discussions among staff about how to work comfortably, when talking about funerals, death and dying, with people who are being supported. Staff recognised that dying and death was a subject that they found difficult to talk about and wanted to avoid especially with the people they support.
However, as different people began to talk about ‘the how to do it’ they recognised that being creative and thoughtful about their approach to the people being supported was the most likely way to tease out the information they needed. Finding out favourite colours, music and clothes would help to make a start.
Although the subject is difficult to raise with relatives, for those who have few communication skills and no relatives this presents far more challenges. The group is now going to take this up for wider discussion in the organisation."
Overall the pilots helped us to see that we need to be more focussed on working in age appropriate ways with the people we support.
To find out more, contact Christine.Williams@c-i-c.co.uk
Pictured below: People from Ashton House at the "crooners" event
Sue Warren, quality assurance manager at Vibrance, www.vibrance.org.uk has identified a number of changes her organisation has made as a result of using the provider toolkit. She writes about how they have used the toolkit and their plans for the future.
"At Bright Horizons a small group of staff including a deputy manager, a senior support worker and several service users discussed parts of the toolkit. There was a really positive, open discussion about how staff support people with ageing. Six out of the twelve service users are over 65 years, a number have been coming to the service for twenty to thirty years. A number of staff have worked with people for many years and know them extremely well.
There was a realisation by some staff that they perhaps don’t record all of the information they know about people’s lives, history, what’s important to them, what makes a good and a bad day, so that if they weren’t there someone else would at least know what was important to the person, important routines etc
The group explained that sometimes other services do not seem to have an understanding of people’s age related needs. They thought there should be a question around people being able to stay in their home with support if they were unwell, currently one person is sent to Bright Horizons even when she is very unwell because her home doesn’t have staffing during the day.
Staff identified bereavement training as something that would be helpful to give them the skills to initiate discussion with people about death and dying before situations arise in their lives that can be very traumatic.
It was interesting that we did not get through many of the standards as the group very much used the questions as a prompt to have very detailed discussion about their practice, the group were able to think about and suggest some possible solutions to some of the problems and barriers they identified.
It was suggested that the group recreate the same open, honest discussion around one outcome at each staff meeting and they were keen to do this.
Corporation Road is a Vibrance registered care home for 8 people with learning disabilities. One person is over 80 years old and 2 people have dementia, other people using the service are in a younger age group resulting in a wide range of individual needs and wishes.
We used the tool with the manager and 2 service users joined our discussion although they were not able to contribute greatly, but they choose to sit with us throughout.
We took a more formal approach and worked through outcomes 3,4,6,7 and 8 the manager was able to describe in detail the ways in which the service meets the standards and identified areas where she faces barriers.
A more structured approach allowed us to consider the questions asked and suggest some small changes and some additions to several outcomes. In outcome 3 we suggested an addition about supporting people when they are in hospital and resources that explain the support hospitals should provide to people with disabilities, this was particularly important as the manager had experienced difficulties in getting appropriate medical care for a service user with health problems.
In outcome 7 we identified how we can improve our support to people to ensure their wishes around their funeral arrangements are recorded and followed.
We identified through outcome 8 that we do not currently talk to people about organ donation, we could perhaps do more to support people to make wills if they wish.
- We found the toolkit to be very flexible it could be used in a range of ways from very informally through different stages up to a formal audit
- We also thought it could be used with individual service users to specifically identify needs and evidence additional resources required as a result of ageing and often associated health issues
- Both the managers involved in the trial thought the toolkit could be effectively used with staff teams to encourage critical reflection and shared problem solving
- The toolkit seemed to encouraged staff to be open and honest about how their service was supporting people as they get older
- It provided opportunities to identify good positive practice within the services and as a result staff seemed comfortable in being honest about areas where they were experiencing difficulties
- We found the outcomes provided a comprehensive measure of how any service is responding to an individual’s needs as they age
- Our managers in particular found the ‘resources’ section very useful
- We think the toolkit is transferable to our other services, we intend to trial it in our mental health services where we have ageing groups of service users
- As a result of using the toolkit we have also incorporated some of the standards into our own internal audit tool to ensure all of our services where necessary are adapting to the changing needs of people as they age"
To find out more, contact Sue Warren at firstname.lastname@example.org
Pictured: Vibrance day opportunities for older people