Step four: Identifying preferences and needs

Introduction

This step will support you in conducting research into what local people want from housing for autistic adults and adults with a learning disability, including their lifestyle, care and support needs, and financial circumstances. It will help you to develop a housing strategy and plan that speaks to people’s needs and preferences, increasing uptake and reducing investment risks.  

What this step will add to your business case: 

• A detailed profile of people, including their circumstances and preferences around housing for autistic adults and adults with a learning disability to support you to prioritise the right mix of housing options in your locality. 

How to?

• Establish the key areas that the research needs to focus on. This may include preferences, priorities, goals and daily lives, health and social care support needed, demographic information, economic profile, geographical preferences.  

• Define the groups of people to be included, using criteria such as groups with different types of needs, age and locality for example. Consider how diverse groups can be included to ensure that all local communities are represented in the data. The research should also seek to include different perspectives and voices, for example, those of the family, friends and carers of autistic adults and adults with a learning disability, where appropriate. 

• Research into the housing needs and preferences of autistic adults and adults with a learning disability can be undertaken in different ways. Focus groups, one-to-one meetings and easy read questionaries are the most common methods. It is likely that different methods will be used for different groups, based on their preferences, types of needs and specific support needed.  

• Consider working in partnership with local community organisations to co-produce the research approach as this will ensure it is accessible to different groups. Autistic adults and adults with a learning disability are more likely to participate in research if approached by people and organisations they trust.  

• In many cases, local authorities and local partnerships opt to commission an independent organisation to undertake the research. While this can be beneficial in terms of expertise and impartiality of the results, smaller scale research can be conducted internally and may offer other advantages. Either way, it is important to define an approach and a plan of action.  

• Topics to be explored in the research may include:  

• Current housing and lifestyle – who people live with now, where they live, type of housing/accommodation, number of rooms, shared spaces, outside areas, how they like to spend their time. 

• Housing and community preferences, needs and priorities – what people value about where they live, whether they would like to share a home and if so with whom, the type of property and space (number of bedrooms, any communal spaces, kitchen or outdoor space), the type of local area they would like to live in. What transport links, infrastructure and opportunities for socialisation, employment and proximity to their families they need. What current and future hobbies and activities they aspire to. Helping people prioritise their needs and preferences is also an important part of understanding what factors are most important and how this can vary across different groups.      

• Health and social care needs and support – including types of support they access and if their current housing meets their needs – includes any care and support staff, background cover, mobility needs, sensory needs, behaviour that challenges, assistive technology.  

• Housing tenure preference and economic circumstances – whether they would prefer to rent a place, buy their own home, or shared ownership. Consider affordability, access to finance, funding and benefits to rent or buy a home. 

• Moving intention and home improvements – any desire or plans to move and why, with any associated timelines or any adaptations planned or needed to improve accessibility, mobility and independence. 

• Understanding people’s views on different housing options. Many people are unlikely to be aware of the range of housing options and the differences between them and so will need comprehensive, clear and accessible information about this. This information should be available in easy read format, and in paper and online versions. This could include eligibility and suitability of different housing types, tenure, the benefits for each of the housing types, as well as common concerns. 

• Work with community groups on topics for specific groups. For example, there may be some additional or different topics to discuss with LGBTQ+ and older people, and these questions can be designed with those groups. 

• Consider how the information collected will be processed and presented in the housing strategy. Look for highlights and trends that represents people’s needs and preferences and give potential providers and developers an overview of the local tendency on housing for autistic adults and adults with a learning disability.  

• Research needs to be designed, analysed and interpreted in the context of the local housing market and the different groups being consulted. More specifically, it is important to be aware that people in different age groups and with different levels of need are likely to have different views on different types of housing for autistic adults and adults with a learning disability, based on their current preferences and this may not accurately reflect future demand.  

• Consider how you will feed back the findings from the research to the participants and highlight how the information gathered is going to be used.  

Partners to involve  

• Local autistic adults and adults with a learning disability, carers, user-led groups, charities and community groups  
• Local authority community engagement and participation teams, customer insight teams, and allocations/lettings, property services/surveyors 
• Local authority leaders focussed on social care, housing and autistic adults and adults with a learning disability    
• General and specialist housing associations and social care providers 
• Integrated Care Partnerships, community health, occupational therapists and mental health leads. 

Example: The 200 Lives project 

The 200 Lives project is a research project funded by the National Institute for Health Research and led by the Manchester Metropolitan University in partnership with National Development Team for Inclusion, London School of Economics and Changing Our Lives. The research aimed to provide up-to-date evidence of people’s experiences and quality of life in supported living and residential care as well as analysis of the costs of the two different types of housing. The research included engaging with 100 people in supported living and residential care as well as 24 family members. Research methods included: 

• Participant interviews: Interviews were generally conducted via semi-structured interview over video call, phone or face-to-face during a home visit. Participants could have a support person, such as a support worker or family member, with them if they wished. Topics included participants’ views on their home, the impact of the COVID-19 pandemic, transport, support needs, money, employment, how they spend their time, social life, safety and health. The research team attended a self-advocacy conference to obtain feedback on a draft version of the interview schedule and consulted 39 people with a learning disability on the wording and choice of questions.  

• Family carer questionnaires: The survey was comprised of closed and open-ended questions, in order to gather family carers’ perspectives on the overall quality of provision, the extent of their own involvement, aspects of the service they valued and aspects they would like to be changed. 

Some of the key findings that related to what people and their families value about their home included:  

• Claiming space: People particularly valued the ability to make the space their own, for example being able to decorate and having space outside of their bedroom that was ‘theirs’. 

• Day-to-day autonomy: Valued being in charge of their day-to-day life and being able to choose what they did and when they did it, which gave people a sense of freedom. 

• Location: The location of the home was important, particularly to people in supported living. People valued living close to people they know and having easy access to local facilities. This helped to give people a sense of community and independence. 

• People: The people they lived with played a big role in whether someone liked their home or not. For many people, the company of their housemates and staff was one of their favourite things about where they lived. However, it could be difficult when housemates or staff moved on. When people had problems with their housemates or staff, this had a big effect on how they felt about their home. Equally, some people may prefer to live alone or with a partner.  

• Families: Family members valued properties that were a good size, well-kept and homely, in safe locations with easy access to local facilities. It was important to many that their relative stayed living locally to them. Relationships with housemates and staff were also important, as well as opportunities that the housing set-up provided their relative to live the life they wanted. 

Based on the findings, the report outlines a number of recommendations for commissioners, service providers, housing providers, regulators and policymakers to improve to improve spaces, support and services for people in supported living and residential care. Please see the full report and easy read summary for more information.