Growing Older Planning Ahead Report: For Adults with a Learning Disability

Executive Summary

Tees Valley Healthwatch Network worked in partnership with North East Commissioning Support on behalf of the North East and North Cumbria Integrated Care Board (NENC ICB).

Our aim is to deliver a local review in response to the national requirement to improve planning process when families can no longer support their family member to stay at home.

The particular focus of this project is to improve support for family, carers, and older people with learning disability (aged 40+ to reflect the early onset of chronic health conditions such as dementia) by producing effective recommendations.

Our engagement took place from June 2023 until October 2023. The promotion of our work was supported by a wide range of partners, including Stockton-on-Tees Borough Council and the VCSE sector.

To ensure this research was accessible we used various methods of engagement to gather feedback including surveys, one to ones, focus groups and meetings with professionals and service users.

We spoke with Carers, Service Users, and Professionals to determine what their main concerns are when planning for the future, to inform how services can be improved, ensure a joined-up multi agency approach and ensure a person-centred approach in the decision-making and planning process.

We were given the opportunity to speak with residents at Accent Group – Argyl House Residential Provision, to get an insight into what residents’ feel is a good provision, which enables them to live independently, while feeling safe and supported in a community they feel part of.

We found this topic to be particularly difficult for Carers and Service Users who had little awareness what services could be available in the future if circumstances changed, and additional support was needed. The happiness, safety and security of the service user was a clear priority, along with choice and control.

All the feedback gathered has supported the recommendations for the local area, this included residential provision to be available in the locality, clear communication and concise transition plans, together with a better understanding of what support could be available to help with planning for the future. All information contained within this report will be embedded in an overarching report that will inform the future delivery of services across the Tees Valley.

Survey findings: Summary

What matters most to people in Stockton-on-Tees

This engagement gave us the opportunity to have one-to-one conversations with a wide variety of people with a specific focus. We were able to speak with Carers, Service Users and Professionals to gather information that will be used to support the future development and planning of services for those with a Learning Disability.

This extensive focused collaboration with services identified the challenges facing those people with a learning disability, their carers and professionals in being able to effectively plan and support individuals with the planning of their own future care needs as they grow older.

The people we spoke with found this to be a particularly painful and difficult subject that echoed throughout our conversations, people felt unsure what to expect or how care would be delivered in the future. The theme that ran throughout all our feedback, particularly from carers was the concern of who would care for their loved one if they were no longer able to. These concerns focused around:

• Health Deterioration.
• Emotional Wellbeing – individuals being unhappy.
• Financial struggles.
• Living Independently.
• Who will take care and responsibility of their loved one when they are no longer able to.

For those living with a Learning Disability most people said they would prefer to live in sheltered or supported accommodation as opposed to living on their own, however there were five individuals who expressed that living in their own place would be a preferred option, while also having access to 24-hour care and support.

We asked people what they liked about where they currently live and what was important to them feedback gathered included:

• Having their own space and independence, allowing for privacy.
• Being able to see family and friends.
• Feeling safe, secure and supported with familiar surroundings.
• Communal activities – such as TV, pool table, dancing, wordsearch and colouring.
• Being able to access shops and days out when they wanted to.
• The ability to plan and make own meals and complete other household chores with support if needed.
• Location was very important to individuals to ensure ease of access to family, friends and local facilities such as shops, pubs and clubs.

The individual care needs of people were wide ranging with some needing support with personal hygiene and others requiring more low-level intervention. This highlights the continued need for services to ensure a person-centred approach that can be adapted easily as needed, allowing for continued care in the same location while maintaining safety and familiarity for the individual.

When asked what three things made them happy the responses were as follows:

1. Spending time out and about with family and friends, holidays, dancing and day services
2. Being able to watch TV, play music or use of a games console.
3. Going on trips to Bingo, football, shopping, bowling, cinema and keeping active
4. Doing puzzles, arts and crafts, and being able to help others in a social environment.
5. Having a routine was seen as important.

We asked individuals if they had their own place to live would they like someone to live there with you. This was a mixed response with some people saying yes, they would while others were unsure and some saying no. This highlights the need for services to be adaptable to individual requirements.

When asked if people would like to live close to where they live now, most people answered yes, highlighting that planning for future service delivery needs to be maintained within local areas, supporting familiarity and ease of access to friends and family.

Of the people we spoke to there was an equal split of those who had been spoken to about where they would be living in the future and options available to them. Consistent, clear communication needs to be embedded within the future planning needs. Although some people felt they did not want to be included in choosing where to live, some individuals would like to be part of that process. Likewise, some of the respondents said they would like to be involved with tasks such as:

• Helping to pack and move.
• Helping to buy things for the new place.

They also expressed that they would like support to:

• Understand how to use things in the new place.
• Help to get to know their surroundings and new neighbours.
• Access a specific contact or support when needed.
• Have regular visitors.
• Take part in activities.
• Make new friends.

While carrying out this piece of engagement we used the opportunity to find out if individuals had been offered their Annual Health checks. Most people we spoke to had been offered their Annual Health check and had attended, with a few individuals feeling unsure if they had been offered their health check or attended. However, of those who had attended their Annual Health check there were some who did not know if they had a Health Action Plan in place.

For those who had attended and were aware of their Health Action Plan we asked people to list three things the Health Action Plan helps them to do.

These were:

• To keep fit and active and the importance of exercise, movement, and dance.
• To get blood tests and to have blood pressure checked.
• To eat healthy and how to prepare food and drinks safely.

We asked individuals if they wanted to tell us anything else, it was clear from the responses that the correct support was important to ensure health and wellbeing.

Gathering responses from professionals was difficult, we found that a lot of staff that we spoke to did not see themselves as professionals. We identified this early in the intelligence gathering process and amended the title of the survey to include ‘Support Worker’ however, this still did not gather the feedback we were hoping to achieve. Staff did tell us they did not feel equipped to provide this feedback.

Of those who did complete the survey we were told that families were part of the process for planning for individuals and moving, with most responders reporting that they felt this was done quite well. Areas that they felt were good were:

• The sharing of information.
• Advocating on behalf of the service user – ensuring a person-centred approach.
• Supporting families to make choices to transition to a new home.

We then asked which areas needed improvement, the findings were:

• Facilities and homes that meet the needs of the clients in the local area.
• More involvement with carers early, to make transitions easier.
• More time and finances to help with the planning.

We wanted to determine the support received by older carers when they are unable to support those they care for; we were told that this forms a wide variety of support including:

• Extra care going into the home to support areas such as helping with their relative’s personal care.
• Taking them into the community.
• Sitting with the person while the carer goes out and offering respite care.
• Providing reassurance from the staff team and liaising with professionals to highlight any concerns.
• Working closely with Social Services and STEPS to look at ongoing needs and make adjustments.

We asked what current services support a carer of an older person (40+) with a learning disability as they age. Professionals/Support Workers informed these were:

• Day Services
• Advocacy Services
• Social Care Respite Service
• Direct Payments
• Care Companies
• Carers Support Services provided by Stockton-on-Tees Borough Council
• STEPS

We asked if any gaps in services could be identified in current service provision for older people age (40+) with a learning disability when leaving home for the first time. We were told these were:

• Availability of housing provision.
• People not having independent living skills to cope with living alone, such as cooking and budgeting.
• Mental Health Support.
• Support with transition.

From the perspective of a professional we wanted to determine what elements of care would be included in an ideal support service for older people (40+) with a learning disability to move out of their current home. Feedback included.

• Person Centred Care – with a clear, detailed transition plan that includes what the person wants and where/how they want to live i.e., Residential, supported or independent.
• Detailed information to be passed through assessment, including discussions with social Workers, carers and the individual to ensure needs are met.
• Communication to be seen as key in explaining a person’s journey, wants and needs.
• Individuals and Carers to be involved in all aspects of the decision making with regular reviews initially to ensure the new home is working effectively, maintaining regular contact with Carers.

As part of this process, we wanted to determine from the perspective of professionals how they support individuals to access their Annual Health Checks. We found that this was usually through discussions with Carers at Preadmission and at that point professionals would be able to recommend attending. However, they did not gather feedback as to whether the individual had attended and felt unable to pursue this further. Professionals were aware of Health Action Plans and told us the individual or Carer would have these.

We asked for any examples of good practice in residential, supported living and family support services that support interventions for older people with learning disabilities (and their family/carers) with behaviours that challenge others. We were told these could include:

• At a glance’ – quick access information
• Supported living – Community Campus which would support the individual to help build a routine as well as developing better hygiene/self-care.

When asked if there was anything else they would like to tell us we were told:

“I personally feel that people with a Learning Disability should be encouraged when they turn to a young adult to start thinking about and exploring the idea of living away from their parents/carers to promote their own independence more and I don’t feel like they always get the opportunity too and then it comes to a crisis point of the parents becoming elderly and unable to look after them anymore or worse and then the process is harrowing for all involved.”

Recommendations

This focused engagement work has highlighted areas that could help to improve transition pathways for those with a learning disability, carers and professionals. 

Valuable feedback received has informed the following recommendations:

• Communication – Clear, timely and appropriate information to form part of the future planning process, this information should detail options that will be available in the future. This would support carers; service users and professionals in approaching difficult conversations confidently in a supported way, with awareness of the options available to them.
• Introductory Visits/Open Days – Lack of awareness of facilities was evident from the intelligence we gathered. Planned visits to established residential facilities would help to gain insight and understanding into future options, this could provide reassurance of how services could support future needs and ensure a person-centred approach. This could also give residents the opportunity to feel empowered and showcase their communities. 
• Location – It was clear throughout our engagement that location is of great importance to individuals and their carers. The ability to access local services, stay within the locality and have regular contact with family and friends was seen as one of the most important aspects in the planning process. Most individuals said it was important for them to stay within Stockton-on-Tees.
• Continuous Reflection and Review – It is important that planned reviews take place to ensure that service users feel happy and safe within the environments that best caters for their individual needs. It was clear that a main concern for carers and service users when planning for the future, was that they felt happy, safe and had choice and control of their lives. 
• Clear Transition Plans – The input from service users, carers and professionals during the transition is vital to ensure a co-ordinated approach that clearly identifies the needs and wants of the individual. This documentation needs to be consistent and easy to read to enable ongoing support is appropriate to the needs and wants of the service user. 
• Best Practice - It was clear from our visit to Argyl House that service users felt happy and supported in this provision. There was great emphasis on the managerial style of a staff member, with an inclusive approach to building a community that encouraged participation. It would be useful to look at what works well to help inform the future planning and delivery of services.