Appendix 4

EIT Review of Learning Disability Services

Feedback from the public consultation events and forums

Public Sessions

26 June 2012at Eaglescliffe Village Hall

3 attendees

  • Need a better awareness of what is available within Stockton to make informed choices about the preferred services, especially if considering a personal budget.
  • Clarity required regarding an individual’s personal budget and their “Resource Allocation Score”.
  • Questions about the full cost of the Allensway service and centralised recharges etc.
  • Comment that the motivation for the review coming through from the consultation document is a positive one about service improvement not wholly motivated by reducing costs.

2 July 2012 at Billingham Community Centre

7 attendees

  • Strong concerns expressed about the principle of consulting service users suggestion that service users will “aim to please” in responding to any direct questions and offer the answers they feel are required.
  • Consultation exercise led by Stockton Helps All and the Accessible version of the consultation document is pitched too high for some clients to understand or take part in.
  • Concern that service user consultation has begun prior to parents and carers being notified.
  • Is TASC under threat?

SBC Staff in reply outlining the breadth of the commissioning exercise underway to ensure the best services are available to suit individual needs.

  • Concerns about directing complex needs clients to only one venue – suggestion that this will be limiting for the clients in terms of interaction and socialisation.
  • Clients who attend TASC also benefit from the range of experience that this venue brings which would no longer be available if only mixing with complex needs clients.
  • Access to services and facilities in other Council venues should be encouraged e.g. opening up access to the Hydrotherapy Pool at Ashtree School.
  • Routine and familiarity for some service users is so critical to especially those with conditions on the autism spectrum. Established patterns are key to the individuals wellbeing, some of the proposed service changes would therefore be too disruptive.
  • Acknowledgement that clients who are more able should have and are entitled to choices and the opportunity to take part in community activities – this however should not be at the expense of those who are more limited and value the stability and companionship of the established arrangements at Rievaulx.
  • Grave concern that the closure of Rievaulx is the underlying Council agenda
  • What is the offer as the alternative to traditional building based services, more detailed required in order for parents/careers to make an informed decision.
  • Assertion from parent/carer that LD Clients are not always welcomed in community venues – prejudice remains alive and well in 2012
  • Supported Living – a number of parents have sons/daughters waiting for access to supported living. SBC staff in reply outlining work with providers , shared housing options and a more co-ordinated approach to match needs and supply.
  • Rievaulx (CIC) is a highly valued facility and can demonstrate they have assisted clients to progress.

5 July 2012 at South Thornaby Community Centre – No attendees

11 July 2012 at The Education Centre

7 attendees

  • Question - Is there additional funding for SBC to provide autism specific services locally?
  • Answer – Not specifically but the need for local autism provision is partly to meet increasing demand following better diagnosis and to provide quality choices more locally and reduce the need for high cost out of Borough placements. Bringing a quality Autism Specific service to Stockton was strongly supported during the phase 1 consultation.
  • Speculation about ESPA opening a facility on Teesside.

Answered – yes but they are only one provide who is interested in bringing autism specific services to the Tees Valley.

  • The ultimate aim of the package of proposals put forward for consultation is to offer clients more choice and flexibility including service provision, e.g. opening hours and weekend coverage, a menu approach from which clients and their parents/carers can pick and choose from.
  • Assertion from parents that SBC Services are increasing expensive and difficult to access e.g. adult education classes being withdrawn or becoming so costly as to price-out people with learning disabilities from taking part.
  • Assertion from parents that clients are becoming increasingly restricted in their choices and options following changes in Adult Education policy and pricing structures.
  • Concern about locating all complex need clients in to one venue – ghettoising the individuals and depriving them of stimulation and diversity.
  • Assertion from parents that navigating a meaningful range of affordable options to occupy a service user properly is becoming increasingly complicated and the LD review might compound this trend.
  • Questions regarding the unit cost of sessions of sessions at Allensway – surprise at the seemingly low cost per session.
  • Anxiety that services have begun to cycle i.e. the current range of consultation proposals as they stand area backwards step in terms of centralising services for those with most complex needs , thereby making them more vulnerable.
  • Parents/Carers taking responsibility for Personal Budgets – TOO MUCH TO ASK!!!
  • Assertion from parents that indicative budget may and often do not meet the costs of the individuals care.
  • Lack of involvement for parents and carers in the direction and specifics of Brighter Futures.
  • Assertion from Parents/carers that the correct messages are not being communicated therefore people are scared and confused about the proposed changes e.g ghettoising complex needs clients in Allensway whilst the more able are cast out to fend for themselves in community centres.
  • Brighter Futures – needs space for the different range of clients needs
  • Why is Stockton Football Club the venue for Brighter Futures
  • Brighter Futures – lots of issues raised about the appropriateness of the venue e.g. lighting in the toilets is on a timer which can and does leave clients in darkness in the worst case.
  • Preparations for supported living needs more preparatory work to ensure that the individuals sharing are compatible and have the best prospects of getting along.
  • Community Bridge Building – concerns about clients being left with volunteers
  • Teesside Wide Safeguarding Board provides accessible advice on a range of issues and should be promoted more actively and widely.

18 July 2012 at All Saints School, Ingleby Barwick

4 attendees

  • Discussion concerning the principles contained within the consultation document and how they affect the individual are sometimes conflicting…..i.e. the parent/carer might agree with the general principle but not with how they perceive the person they care for might be affected by and resultant changes.
  • Assertion from SBC staff concerning the rigours of the “Best Interest Decision” and or the individual’s preference where there is capacity. This led to a conversation concerning the influence of the parent/carer on changes to the service users’ package of care.
  • Question – can SBC afford to provide more choice and diversity within the learning disability offer within the existing or a reducing budget?
  • Answer – this is the ambition of the review by improving working practices, better commissioning and achieving efficiencies without detriment to service for individual clients.
  • Tees Wide Commissioning - this is an ambition where appropriate e.g. Autism Specific Services where there is sufficient demand within the wider area to attract a specialist provider.
  • Respite Services – a quick fix to extend from 6 to 9 beds whilst working up options for more diverse services.
  • Meals at Allensway – parents and carers acknowledging the considerable subsidy that is required to put the plate before the service user.
  • Carer assertion – where an individual in service is both Health and SBC part funded it would be so beneficial to have a clearer understanding of what social care from SBC covers and what Health are purchasing.
  • Carer assertion – related to the above it would be helpful to have more clarity about the client allowance: if they are in residential care for instance is there an allocation for clothing or towards a holidays for instance?

30 July 2012 at the George Hardwick Foundation

6 attendees

  • Concerns raised about the definition of “independent” / “supported” living – independent living sounds very daunting to parents and carers.
  • Issues raised about Adult Ed classed being withdrawn especially at short notice
  • Concerns aired about the uncertainty inherent with welfare reforms and benefit changes.
  • Continuity of care – discussion concerning any proposed changes to service, the timescale for implementation and continuing influence of the individuals care plan accounting for their changing needs and circumstances in a timely way.
  • SBC Staff highlighting a push especially from younger service users for more independence variety and choice in day care and independent living opportunities.
  • Carer assertion that decisions have already been made and that and that the consultation exercise is tokenistic and there is little opportunity for genuine influence.
  • SBC Staff in reply highlighting the scrutiny, challenge and rigour demanded by the Select Committee Process in demonstrating a robust consultation exercise.
  • Issues raised about service user representation at Panel
  • Short Breaks and Respite – a parent shared her experience of using a personal budget to arrange a holiday for her daughter and her personal assistant and how beneficial this had been for all concerned.

31 July at Billingham Forum

18 attendees

  • Parents and Carers attending the consultation session specifically to support the existing service provided from Rievaulx and provide challenge to proposed changes.
  • Issues raised about disrupting service users routines and their peer/friendship groups which could result from the proposed changes to service.
  • Assertion from a parent /carer that the introduction to the Phase II consultation document does not include any positive statements concerning Rievaulx that were made during the phase 1 consultation and this is an omission..
  • Comment regarding the Cabinet Report that refers to young people in transition’s aspiration for new services and more choice ~ this needs to be tempered by the strong collective message of no change at Rievaulx.
  • Is the proposal of change to Rievaulx driven by the off hand comment about the building being “too noisy” if so the proposals for change are misguided and ill founded.
  • Carers and parents expressing the strongest support for staff at Rievaulx, and their faith (parents/carers) in the facility.
  • How can clients or their parents/carers support the proposed service changes when only the principles are explicit, more detail is required to make an informed decision.
  • Again the assertion that when questioned clients are sometimes wanting to please in giving their answers and therefore the response can be influenced by the individual posing the question.
  • Parent/carer assertion that clients should not be canvassed for opinion without their parent of carer being present. Lack of confidence expressed in Stockton Helps All to elicit the feelings of service users as many service users are known to want to please by offering what they believe is a correct answer.
  • The consultation proposals do not take account of the impact of potential change on service users in terms of their behaviours or the knock on effects for parents or commissioned providers.
  • SBC staff trying to address these comments by highlighting the importance of the individual’s assessment being the basis for any changes to their care package which will pay due regard to the individual’s ability to deal with change.
  • Carer/Parent assertion that only 6 service users “hand picked” by Stockton Helps All were responsible for the perception that Rievaulx is unsuitable as a venue and were asking for changes.
  • The notion of a expanding to community venues – what is a “hub” in this context? Brighter Futures was cited as an example and it’s appropriateness as a venue questioned.
  • Friends of Rievaulx have raised over £51,000, activities in and around the existing provision are an invaluable resource for support amongst parents and carers which should not be ignored or dismissed.
  • Questions about the November Cabinet decision, will this mean immediate and significant changes to services?

SBC Staff answering - no, changes would be implemented as appropriate some requiring a considerable lead in time.

  • Safety and Security should be at the forefront of planning any community provision especially in terms of the specific venues.
  • Is Allensway ready and able to deal with an increasing number of higher needs clients?
  • Perhaps there is a need for different options and outcomes for young people coming through transitions in to adult services and those who are older and established in their routines and relationships.
  • Respite Care – the overnight offer needs to be more flexible as the rigid opening and morning check out times are sometimes problematic.
  • Moving Higher Needs Clients to Allensway is inappropriate as these individuals might be the most adversely affected by any changes.
  • Is there a budget to realise the proposals in the consultation document.
  • Service users in Rievaulx know their way round and they can find their own quiet space when needs must.
  • Carers and parents need to be valued properly as unpaid workers.
  • Any meetings with service users should involve their parents and carers also.

6 August 2012 – South Thornaby Community Centre - No Attendees.

14 August 2012 – George Hardwick foundation,

5 attendees

  • It was asked if Allensway suits the individual’s needs would they remain there? The carer was advised that yes they would unless better services, based on assessed needs are identifiedthe individual’s package of care will be offered on the basis oftheir individual review.
  • It was confirmed that service users are assessed individually by Social Workers
  • It was felt there was an inherent problem / lack of clarity with the definition of complex needs and concerns were raised that decisions were being made when there was a lack of clarity
  • Concerns were raised that carers were being asked tomakecomments on proposals without the details of the alternative offer of services under consideration available
  • concerns were raisedas to the quality and suitability of some community venues e.g. old school buildings and church halls etc.
  • Carers believed additional community based activities might raise costs. It was highlighted that the aim of the changes was to promote greater independency, complemented by initiatives such as travel training
  • Q - My daughter would like to do something away from the traditional day service l, what if she leaves could she go back? A. Yes if that is supported by her review
  • Flexibility of access to services was raised, whether people based at Allensway could access some days at Allensway and some with other services, the response was that this was possible.
  • There was a strong concern that loved ones would be ‘cast adrift amongst community venues’
  • It was acknowledged that more detailed work would be needed to take this forward.
  • Further concerns raised were
  • Problems if cutsare made in services there will inevitably be additional pressures
  • additional community based activities may suit new and younger service users but could be more problematic for older people clients.
  • Negative experience of community work that was a disaster – many years ago
  • It was suggested that Allensway should be a hub
  • Transition: There was varied carer/parent experience of the transitions process.Assessed need was highlighted asthe starting point it was reiterated, once an individual is assessed as having a defined need under the (adult) FACS criteria SBC have a statutory duty to provide an appropriate package of care.
  • Different views discussed
  • LD is Cinderella service and been through number of upheavals some well others handled badly. Alwaysneeds based.
  • Personal Budgets lack of choicethis is an issue that the review is attempting to address in a variety of ways.
  • Lack of confidence in commissioned services: Commissioned providers come and go – when funding runs out – at least with Local Authority services there is a feeling of some security – this is important in giving confidence.
  • It was clarified that day services were provided beyond 65.
  • Carer assertion was that Lanark was not suitable for respite for their relatives needs
  • Carer stated their son would not want to go into residential care with current problems. Their understanding was that there were no options for supported living in economic climate, it was reiterated that this was not the case, Yes it was possible
  • Concerns were raised with Lanark
  • as although it was very good and secure, there was an issue as to the need to pick up clients by 9.30am and clients can’t be dropped off until 4.30pm. This results in booking 2 nights when only 1 needed because of pick up and drop off times.
  • transport of medication now have totake over medications to Lanark by the carer they cannot go with the client to day services as used to happen, this causes great problems.
  • Concerns were raised as to the closing of the canteen in as it was believed that this enabled staff to monitor eating habits.

Consultation Forums that were attended

Carers of those using Brighter Futures

20 June 2012 - George Hardwick Foundation

9 attendees

Key Points

  • Lack of clarity as to the service, in particular the length of service clients can access the service
  • It was commented that the PCP was ‘not fit for purpose’ and a’useless document
  • There should be 6 monthly reviews of clients
  • Clear outcomes need to be set
  • Moving on after 5 years was a problem as clients ‘enjoyed the service. A move on service similarly structured needs to be developed, that is age appropriate with a similar remit. Services need to be commissioned for this client group
  • Clients and carers are frightened of them leaving the service because the lack of services
  • A definite base is needed for clients to access if activities are cancelled.
  • If services change there needs to be a phased transition
  • Some flexibility was seen as positive, but some liked the consistent times
  • Direct budgets were seen as difficult to manage to support groups of clients.

BME Community Focus Group - Facilitated by Stockton LINk