Coming Home Out-of-Area Placements & Delayed Discharge for - - PowerPoint PPT Presentation

Coming Home

Out-of-Area Placements & Delayed Discharge for People with Learning Disabilities and Complex Needs

Anne.macdonald3@gov.scot

Overview of Presentation

• Brief description of project
• Findings
• Summary of issues
• What makes for good support
• Recommendations
• The way forward

Description of Project

Background to the Project

• Long-term aim for people to live in their local

communities

• Need to develop capacity in Scotland for local, specialist,

community-based services

• Keys to Life recommendations (2013)
• KtL Implementation Framework (2015)
• 2 year project from April 2016

Keys to Life Recommendations

• Scottish Government to establish the Scottish data on
• ut-of-area placements
• Scotland to build the capacity to deliver specialist

services more locally

• By 2018, people with LD & complex needs who are in

facilities outwith Scotland, to be supported to live nearer their family in Scotland

The Vision

• That all people with learning disabilities will be able to

lead full, healthy, and productive lives in their communities, with access to the same range of options and life choices as any other member of society.

• That support to people with learning disabilities needs to

be framed in the broader context of equality and social justice, not just within the narrower focus of service delivery; in particular, that better lives, for people with complex needs is a human rights issue.

Aims of the Project

• To gather accurate national data on adults with LD who

are out-of-area or delayed discharge

• To explore the type of support required for this group
• To take a national strategic approach to finding support

solutions

• To identify sustainable local alternatives to out-of-area

placements & to reduce delayed discharge

• To scope the use of Positive Behavioural Support in

Scotland and consider its use to support this group

Data Collection

• Named contact in each HSCP
• Individual returns from each HSCP
• Specific return for each individual (16+) with LD who is

either delayed discharge or out-of-area

• Delayed discharge (27 questions)
• Out-of-area (29 questions)
• With a LD (autism-only excluded)
• Based on date 31st January 2017

Other Sources of Information

• Meeting stakeholders
• HSCP (commissioners, social workers, care

managers, psychologists, psychiatrists, LD nurses,)

• Social care provider organisations
• Families & carers’ groups
• Other (SG, MWC, SWS, NES, SCLD)
• Visiting services
• Liaising with colleagues outwith Scotland
• Consulting research & good practice guidance

PBS Data Collection

• To scope the use of PBS across Scotland including:
• What PBS training is being done & by whom
• Process of implementation
• Whether evaluation is taking place
• PBS questionnaire sent to:
• HSCP
• Social care providers
• Carers’ groups
• Consulting research and good practice guidance

Findings

Out of Area Group

Out-of-area Group

• 705 people out-of-area. This is only from 30 HSCP, so likely

to be underestimate; 79 of these people were out of Scotland.

• 45% out-of-area more than 10 years, and 23% out-of-area for

5-10 years.

• Of the 705 people, 453 had gone out-of-area not through their

choice, or their family’s choice (65%).

• Main reason for out-of-area placements was lack of specialist

services available locally (53%).

• Of the 453, 109 were said by HSCP to need repatriated; these

are the priority to return group. This is likely to be an underestimate as for another 100+ the need for repatriation was not decided, or this data was missing.

Priority to Return (109)

Characteristic Options Percentage Gender Male Female 72 28 Autistic Yes 49 Forensic Yes 18 Age 16-17 18-20 21-34 35-44 45-54 55-64 65+ 6 17 34 16 16 7 4 Mental health diagnosis Yes 21 Challenging behaviour Both current & historical Current but not historical Historical but not current No current or historical Don’t know/missing 65 1 16 17 1

Challenging Behaviour

Types of Challenging Behaviour Percentage Displaying Support for Challenging Behaviour Percentage Use Current challenging behaviour 66 PBS input 37 Physical aggression 55 Active support 32 Verbal aggression 39 Communication strategies 50 Self-injury 31 Psychological therapies 19 Self-neglect 17 Sensory diet 6 Property destruction 40 Risk Management Percentage Use Disruptive behaviours 28 Physical restraint 21 Non-compliance 26 Seclusion 11 Sexual challenges 18 As required medication 44 Removing clothes 11 Additional staff 41 Absconding 1 Environmental restriction 36 Smearing 5 Technological restriction 9 Substance misuse 1 Mechanical restriction 1

Placement Prior to Out-of-area

33% 12% 14% 3% 16% 13% 2% 6% 1% 5 10 15 20 25 30 35

Barriers to Repatriation

17% 2% 45% 26% 3% 4% 3% 10 20 30 40 50 Missing Lack of Funding Lack of Accommodation Lack of Service Providers Family Issues Legal Issues Guardianship Issues

Delayed Discharge Group

Delayed Discharge Group (67)

Characteristic Options Percentage Gender Male Female 66 34 Autistic Yes 36 Forensic Yes 21 Age 18-20 21-34 35-44 45-54 55-64 65+ 2 37 22 24 13 2 Mental health diagnosis Yes 40 Challenging behaviour Both current & historical Historical but not current No current or historical Don’t know/missing 73 10 5 12

Delayed Discharge Group (67)

Characteristic Options Percentage Placement still available Yes No Don’t know/missing 10 70 20 Repeat admission Yes No Don’t know/missing 33 49 18 Previous placement Family home Supported living Hospital (NHS/private) Care home Other Missing 16 34 16 6 9 19 Discharge to Supported living Care home Other NA, no plans Missing 46 5 5 25 19

Reason for Admission

27% 16% 9% 48%

5 10 15 20 25 30 35 40 45 50

Missing Other* Service Breakdown Challenging Behaviour

Length of Admission

18% 12 17% 9% 13% 9% 22%

5 10 15 20 25

Missing Less than 1 Year 1-2 Years 2-3 Years 3-5 Years 5-10 Years 10+ Years

Length of Delay

21 6 5 1 1 33 5 10 15 20 25 30 35 up to 1 year up to 2 years up to 3 years up to 5 years up to 10 years missing

Barriers to Discharge

25% 3% 51% 15% 2% 3% 1%

10 20 30 40 50 60

Missing Lack of Funding Lack of Accommodation Lack of Service Providers Other Legal Issues Coordination of Funding Geographical Issues

Challenging Behaviour

Types of Challenging Behaviour Percentage Displaying Support for Challenging Behaviour Percentage Use Current challenging behaviour 73 PBS input 43 Physical aggression 67 Active support 24 Verbal aggression 49 Communication strategies 40 Self-injury 31 Psychological therapies 24 Self-neglect 9 Sensory diet 3 Property destruction 28 Risk Management Percentage Use Disruptive behaviours 28 Physical restraint 37 Non-compliance 31 Seclusion 10 Sexual challenges 21 As required medication 63 Removing clothes 6 Additional staff 18 Absconding 2 Environmental restriction 43 Smearing 3 Technological restriction 5 Substance misuse Mechanical restriction 2

Summary of Issues

Impact of DD and OOA

• Impact on individuals is significant and can include:

breakdown in family relationships & friendships; loss of their home; stress, confusion & uncertainty about the future; loss of community networks & access to the community; being subject to restrictive practices; loss of skills and opportunities

• Impact on services can include an over-reliance on

hospital or out-of-area placements, sometimes at the expense of developing local community expertise; lack

• f access to inpatient support for those who need it,

delays and barriers to admission

Summary of Issues

• Many social care services struggle to meet the demands of

providing quality services to this group, both in terms of staff with the necessary skills and suitable housing to meet complex needs.

• Social care faces a number of challenges which impact on

their ability to provider this level of support.

• However, that many people with complex needs and

challenging behaviour live successfully within supported living settings.

• Successful services are related to a number of factors; we

need to think about models of support which are likely to be less fragile, without losing a commitment to person-centred support.

Summary of Issues

• Challenging behaviour is a major factor resulting in service

breakdown and hospital admission. Additional support needs such as autism or mental health issues are also significant

• factors. There is a therefore need for effective and timely

access to expert intervention, both to prevent crisis, and to help deal with crises when these arise.

• The fact that challenging behaviour is such a significant factor

also points to the need for earlier intervention with young people with learning disabilities who are at risk of developing challenging behaviour. Over 80% of the group had historical challenging behaviour, meaning that these are very likely to be individuals who would have benefited from early intervention.

Challenging Behaviour

• Challenging behaviour is functional, that is, it serves a

purpose for the individual and is an attempt for the person to influence their world and meet their needs.

• Challenging behaviour is understood as a communication

from the individual and as product of the environment they live in, and of the support they receive.

• Challenging behaviour is not a diagnosis, and although it is

associated with certain conditions and syndromes, it is not innate to the individual, but rather an expression of their unmet need. Given the right combination of circumstances, we would all have challenging behaviour.

Risk Management & Restrictions

• Restraint and seclusion are very restrictive interventions

that deprive the individual of their freedom, either by forcefully holding them against their will, or by locking them in a room or area against their will, where they are deprived of human contact.

• There are considerable risks that can be associated with

both these interventions, particularly restraint, which has been linked with high levels of physical injury and death.

• The use of psychotropic medication in managing

challenging behaviour is concerning, particularly for people not diagnosed with any mental health issues.

Positive Behaviour Support

• PBS is an ethical, evidence-based, and proactive approach to

supporting people with learning disabilities, particularly those with complex support needs.

• It is person-centred, and based on a analysis of behaviour

and an assessment of the person’s life circumstances; it therefore involves the development of strategies specifically designed to suit that person.

• PBS focuses on improving the person’s quality of life and,

consequently, reducing challenging behaviour.

• It is accepted internationally as best practice and it is well-

established as an effective framework for supporting people with learning disabilities and challenging behaviour.

Universal Support

• Person-centred and predictable environments
• Active Support and participation in activity
• Environments which support communication

Specialist Support

• Simple behavioural interventions
• Additional support in key areas
• Function-based strategies

Intensive Individualised Support

• Individual comprehensive PBS plan
• Based on in-depth functional assessment
• Data collection and individual monitoring

PBS Tiers of Support

What Makes for Good Support

1. Person-centred approaches: All support provided to people with learning disabilities should be person-centred, in order to most effectively meet a person’s outcomes and provide them with the life choices and opportunities that they wish. 2. Environments which support communication: The use of a range of augmentative and alternative communication strategies are essential in providing good quality support. 3. Active support and full lives: Active Support has a focus

• n ensuring that people are involved in all aspects of their
• wn lives and support starts from the premise that regardless
• f level of difficulty, disability or challenging behaviour,

people can and should be supported to be involved fully in their day to day lives.

What Makes for Good Support

• 4. Suitable accommodation:
• An environment which keeps the person safe
• Significant outdoor space, with potential for outdoor activity

and sensory stimulation through physical activity

• Potential for flexible use of the environment
• Environmental adaptations to meet people’s needs where

sensory integration issues are present

• Homes with rooms that are bigger than average and allow

for safe management of behaviour

• Services with the capacity for staff space, including the

potential for onsite staff support

• Homes which are sufficiently linked to the local community

What Makes for Good Support

• 5. Positive behavioural support: a comprehensive person-

centred PBS plan is an essential element of good support for this client group, in order to understand the communicative function

• f the behaviour, and to develop strategies to support the person

more effectively.

• 6. Skilled and motivated staff: Supporting people with learning

disabilities and complex needs is a skilled role, which can be challenging; staff therefore need to be well trained and well

• supported. And well paid.
• 7. Good management and practice leadership: skilled

managers who motivate their team and provide clear leadership; and practice leaders who can provide role-modelling and on- the-job observation, guidance, and feedback.

Recommendations

The Way Forward

• Support for people with learning disabilities and complex

needs must be framed in the context of equality and social justice, with the recognition that better services, and better lives, for people with learning disabilities is a human rights issue.

• Any attempt to move away from the current situation and to

create a new dynamic in how support is provided, must therefore recognise that this is fundamentally a human rights issue and must be addressed with the urgency that that context indicates.

• Solutions to this situation are therefore likely to need more

than individual service changes, but must instead be seen within the context of transformational systems change.

The Way Forward

• This involves complex interrelated processes, agencies, and

services, all of which must work together to change outcomes. Unless all stakeholders work together, no one specific element is likely to be successful or sustainable.

• Transformational change involves a change of attitude and

culture, a new belief in what is possible, resulting in significant changes in structures and systems.

• This will include a change in relationships and a shift in

mindsets from all involved. Within this context, strong, determined and effective local leadership will be key, to provide a clear vision of the change that is possible.

Improving Commissioning

• Better planning for complex individuals; proactively

identify complex individuals and plan ahead locally to develop services to meet their needs, including cross- authority commissioning for small numbers

• Develop complex needs standards for commissioning

to guide local commissioning

• Use of co-production in commissioning, to achieve

better outcomes for individuals and to ensure services are more person-centred

• Better links between adult and child services,

particularly with schools in order to improve transition planning

Strengthening Community Services

• Explore options for providing additional community-

based specialist support

• Providing crisis support to social care organisations &

families including respite and developing places of safety for short-term emergency respite

• ‘At risk register’ in each HSCP to proactively identify

those at risk of hospital admission or service breakdown, and to provide support in order to avoid admission

• Improve training and support for families, particularly

around challenging behaviour

Skilling up Workforce

• Recognising that the majority of people with LD and

complex needs living in the community will be supported by social care organisations, so skilling up this sector to be more resilient is a priority

• Training in Positive Behaviour Support (PBS) to be rolled
• ut across sector; tiered approach to training with range
• f options to suit different roles and levels and

developing PBS qualifications to be made available locally, i.e. within Scotland

• Making training financially achievable for social care

providers and exploring options to make PBS training free for family carers

Improving Commissioning

Theme Discussion Points Better planning for complex services; proactively identify complex individuals How might this proactive planning be improved? Developing standards for commissioning for complex needs Would this be helpful? Collaborative commissioning; with

• ther HSCP & with providers

How can we move towards more collaborative commissioning? Better links with schools; improved transition planning How could we improve links between adult and child services? Use of co-production in commissioning Would this improve the services that are developed?

“…our job is not to ‘fix people’, but to design effective environments”

(Challenging Behaviour: a unified approach, Royal College of Psychiatrists, British Psychological Society & Royal College of Speech and Language Therapists, 2007)