What is the data telling us?

Citizen's First, a three year (2008-11) plan for Newcastle written by the Newcastle Learning Disabilities Partnership Board took their estimates of the number of people with learning disability from 'A Life Like No Other' Healthcare Commission 2007.

 

• There is a national acceptance that the prevalence of disability in children is 7% of the child population (4,487).
• In Newcastle the most recent figure for children is 456, taken from family doctors practice lists i.e. people confirmed as having a disability. (Source: Community Team Learning Disability, 2007, from Citizens First 2008)
• However Newcastle has a population of 274,000, with some 64,100 children (aged 0-19). If the accepted prevalence of Learning Disability of 2% is applied to this number it would suggest 1276 children of whom 319 would have a severe learning disability. (Citizens First 2008).
• Quality Outcome Framework (QoF) data for 2007-08 suggests a total of 1,206 people with learning disabilities (and will include both adults and children) on GP registers in Newcastle. This gives an unadjusted prevalence rate of 0.4%.

 Physical Disability:

The number of children and young people of school age, attending Newcastle maintained schools, with physical disabilities increased from 1.8% (50 children) in 2007 to 2.3% (77 children) in 2010. Newcastle is below the national average of 3.8%.

Sensory Impairment:

The number of children with a hearing impairment decreased from 62 to 54 between 2007 and 2009; visual impairment remains similar at 29 and 28; and children with multi-sensory impairment were 2 in 2007 and 6 in 2009 .

A summary of the number of children with other disabilities is provided below:- 

• ­The number of children and young people with Autistic Spectrum Disorders increased from 181 in 2008 (6.3%) to 221 in 2010 (6.7%). National average of 8.1% 
• Children and young people with Severe Learning Difficulties decreased from 251 in 2008 (8.7%) to 235 in 2010 (7.1%). Newcastle well above national (4.1%). 
• Profound Multiple Learning Difficulties increased from 39 (1.4%) in 2008 to 51 in 2010 (1.5%). Newcastle in line with national (1.4%). 
• Specific Learning Difficulties increased from 345 in 2008 (12.0%) to 471 in 2010 (14.3%). Newcastle above national (11.4%). 
• Speech, Language and Communication Needs increased from 303 in 2008 (10.6%) to 412 in 2010 (12.5%). Newcastle below national (16.3%). 
• Behavioural, Emotional and Social Difficulties remained similar at 644 in 2008 (22.4%) and 757 in 2010 (23.0%). Newcastle broadly in line with national (22.7%). 
• Moderate Learning Difficulties increased from 943 in 2008 (32.8%) to 948 in 2010 (28.7%). Newcastle above national (24.2%). 

Trends 

• Overall, there will be an increase over the next two decades in both the numbers of people with learning disabilities known to services 11% over the decade 2001-2011,  14% over the two decades 2001-2021 and the estimated 'true' number of people with learning disabilities in England 15% over the decade 2001-2011, 20% over the two decades 2001-2021. 
• The number of children with complex health needs are increasing.
• More children are being identified with Autistic Spectrum Disorder.
• The awareness of Attention Deficit Hyperactivity Disorder is increasing.

Inequalities

People with learning disabilities are 50 times more likely to die before the age of 50 than the general population.  It is known that people with a learning disability are predisposed to the development of a number of health limiting conditions (congenital heart conditions, alzheimers, gastrointestinal problems and cancer). Many of these conditions can either be prevented, or the severity reduced by early screening and good access to primary and secondary care health provision.

There needs to be improved systems to share data about children and young people with learning disabilities to understand the key inequalities that exist in Newcastle. 

People with learning disabilities are 50 times more likely to die before the age of 50 than the general population.  It is known that people with a learning disability are predisposed to the development of a number of health limiting conditions (congenital heart conditions, alzheimers, gastrointestinal problems and cancer). Many of these conditions can either be prevented, or the severity reduced by early screening and good access to primary and secondary care health provision.

There needs to be improved systems to share data about children and young people with learning disabilities to understand the key inequalities that exist in Newcastle. 

What is the story behind the data?

Targets

Aiming High for Disabled Children provides a framework for agreeing priorities and setting targets.  The Children with Disabilities Management Partnership provides the multi-agency strategic management.

Outcome Improvement Targets in Newcastle Plan for Children and Young People:

Targets are linked directly to Aiming High Core Offer:

• The provision of timely information for parents and carers regarding services available for those with learning disabilities and difficulties.
• Agree system for sharing data regarding the population with learning disabilities and difficulties to inform service planning.
• Engage localities in the service planning for children and young people with learning disabilities and difficulties.
• Ensure more young people experience smooth transitions to Adult Services including improved vocational opportunities.
• The establishment of a Multi Agency Transition Steering Group is now well established and holds an annual event to agree priorities and establish an achievable work plan.
• To increase the number of work experiences offered to young people and a relationship has been established with NTW hospital trust to support work experience across the public sector.
• The roll out of the Person Centred Planning has also been identified as a high priority.

Local Targets in the North of Tyne Strategic Plan specifically relating to people with learning disabilities (all ages):

Goal 21: To improve the health outcomes and support the social inclusion of people with learning disabilities by increasing the number of people with a learning disability having a physical healthcare check and Health Action Plan.

Performance

Direct payments for disabled children were introduced in the Carers and Disabled Children Act (2000).  hildren's Services, through an assessment of need in 2003, offered this method of arranging support for disabled children and their families.

Direct payments for disabled children were introduced in the Carers and Disabled Children Act (2000).  Children's Services, through an assessment of need in 2003, offered this method of arranging support for disabled children and their families.

• There has been a gradual increase of the use of the Direct Payment Scheme over the past 5 years, with a significant increase over 2007 - 2008 with a current total (Sept 2010) of 113 families within which 21 have an individual budget. Direct payments are used to commission a range of short break provision involving childminding, nursery, day care, domiciliary support, sitting service, play schemes and overnight stays.
• There has been a significant increased use of Direct Payments by the B.M.E. families who were traditionally "the hard to reach" families to engage in services. Again this allows greater use of family and kin who will provide care that is individual and culturally sensitive to their needs.

• Newcastle Local Authority is part of the Learning for Living and work pilot.
• There has also been considerable process in developing self directed support and individual budgets with 21 families using Individual budgets in 2010/2011. Families self report improved outcomes in greater flexibility, choice and control. This flexibility has allowed families to focus on securing tailor made services to suit the need of the child.
• The raised participation age pilot is discussing improving employability with 8 young people to follow their journey past age 18 to understand how to improve employability for every disabled child.
• There has been an Increase in the provision of therapy services into special schools. (Annual Performance Assessment. (APA) 2008).
• There has been an Increase in the number of places for 16+ year olds with LDD by 40 to improve vocational options. (APA 2008)
• An ASD pathway, designed with parents and carers, has been produced to guide parents through services and is available through the Family Information Service. (APA 2008)
• The number of children with LDD receiving support into play groups, nurseries and play schemes in 2006 was 34 with a further 25 in 2007. By April 2008 7 more children have received support. (APA 2008)
• The Children with Disabilities and Special Needs Management Partnership is ensuring a cross agency strategy for LDD children is being delivered. (APA 2008)
• The Transition Steering Group ensures improved performance in relation to transition and Newcastle has been rated in the top 20 local authorities for this work.

Local Views:

• The opportunities for those with learning difficulties and/or disabilities to be involved in consultation have been expanded and are increasingly embedded in day to day practice.
• Six organisations focused on children and young people with LDD have achieved investing in children, including 4 out of 5 special schools and the Pupil Referral Unit.
• All children and young people with LDD give their views and these are considered to inform key decisions about their future during the statutory assessment process.
• Annual reviews ensure that views are listened to and taken into account when making decisions about future targets and provision.
• Parent/Carers are involved in consultation and service planning through the Annual Parent/Carer Conference, Disabled Children's Register and SEND Strategy and Early Years Consultation.
• A SEND Parent Reference Group helps the Local Authority monitor the SEND Action Plan and this is chaired by a parent.
• The CWDSMNP links with the Parents Reference Group and joint training is seen as a priority.

What are the gaps in data?

The Quality Outcomes Framework data showing a prevalence of 0.4% based on those people whose GP has recorded their learning disability suggests that general practice records are not comprehensive.

What are the national and local drivers?

Newcastle Children's Trust Board ensures that local services ensures the needs of disabled children are delivered within:

• Every Child Matters
• Aiming High for Disabled Children
• Integrated Youth Strategy
• D'Catch
• Continuing Care
• Valuing People Now

However, in addition, they highlight:

• Getting the right educational support. The 2001 'Special Educational Needs and disability Act strengthened parents' rights to have their child educated in a mainstream school if they wish. It gave schools and local authorities a duty to plan to increase schools' accessibily, both in terms of premises and the curriculum.
• In 2004, the government's special educational needs (SEN) policy Removing Barriers to Achievement set out a programme of action on early intervention, removing barriers to learning, raising expectations and achievement, and bringing improvements through partnerships between agencies.
• Other government policies such as Every Child Matters and the National Service Framework for Children, Young People and Maternity Services have set objectives for children's health and social care, including a standard for disabled children and young people. A key aim of these policies is better inter-agency working. The Early Support programme focuses on this and recommends that families are assigned 'key workers' to help them negotiate to services.

Aiming High for Disabled Children: Better Support for Families (launched in May 2007), is the transformation programme for disabled children's services. Supported by substantial new funding and measures designed to make the system work better, the AHDC Programme aims to deliver:

• Access and empowerment for disabled children and families.
• responsive services and timely support.
• Improved service quality and capacity.

The North Of Tyne Strategic Plan contains the overarching goal to:

• Have more specialist learning disability care closer to home.
• This work is identified as a priority in the Workforce Development Strategy and funding and resources have been made available.

What is currently working here or else where?

• Information regarding support for children with special educational needs, including learning disability can be found on the Family Information Website.
• Newcastle Disabled Children's Register is co-ordinating and providing a quarterly newsletter.

We are delivering Key Working Services for families with disabled children which was piloted and evaluated by parents and carers between June 2007 and April 2008.

The Newcastle Speech and Language Team provide a seamless multi disciplinary service for young children with severe speech and language difficulties through a joint referral system between education and health. This has resulted in significantly improved outcomes for children and eradicated waiting lists for the Speech and Language Additionally Resourced Centre's (ARC).   Many are now able to continue their education in their local school whilst having their speech and language needs met.

A wide range of sports, leisure and cultural activities are available to children and young people with LDD, particularly in special schools and ARCs, e.g. football coaching and Disability Dance in Newburn Activity Centre.

The Aiming High Access Fund has helped to ensure more young people access universal services.

The "Response" Anti Bullying Team is successfully raising awareness regarding bullying of children with disabilities.

Social Care:

Children with disabilities social work team provide support through assessment and planning for children with complex disabilities.

• 291 families are currently receiving a service from the team.
• 244 of the above families receive short breaks.
• 113 of the above families receive a direct payment.
• 19 children with complex disabilities are receiving full time care away from their families and 215 children are receiving care packages to support them living with their families.
• The Shared Care Service provides children and young people with disabilities from birth to aged 18 with a range of short breaks. There are currently (September 2010); 7 shared carers looking after 9 young people.
• Cheviot View is a short break unit offering overnight short breaks to 55 children aged between 6-18 years of age. The unit also provides an outreach service and befriending service.
• Social Care commissions a range of short breaks for children with disabilities including overnight stays and daytime provision.
• Partnership arrangements between Health and LA are in place for joint commissioning of short breaks for children with complex health needs.

Support for Parents/Carers:

Health:

Newcastle PCT total spend on learning disability (adults and children) for 2006/07 was £23 million; 12.6% of the total PCT spend (Robson et al 2008). This represented £7,753,393 per 100,000 population against an average of £5,090,432 in comparable PCTs. Thus Newcastle spent roughly £2 million more per 100,000 population. The absolute overspend on learning disability in 2006/07 was £7,914,979.

The Specialist Community Learning Disabilities Team aims to improve independence and health outcomes for people with learning disabilities.

NHS North of Tyne are developing a comprehensive action plan to address the recent findings of the Healthcare Commission. Current work includes ensuring access to advocacy for service users in patient settings and reviewing admission, discharge and care planning policies to ensure admissions are focused on assessment and treatment as part of an integrated pathway.

 

Newcastle Hospitals Trust:

Provide care and support for children with learning disabilities who have a physical or medical needs identified, both at school and in a range of community settings.

This is provided by:

• Community Children’s Nursing Service
• Pre-school Therapy Services including Physiotherapy and Speech and Language Therapy
• Training for carers, formal and informal, to enable children to access universal services
• Actively participate in transition at all key stages of children’s life into adult services
• Employ therapy staff who work into the specialist’s evaluation provision in the organisation:
• Occupational Therapists
• Physiotherapists
• Speech and Language Therapists
• Ensure safe discharge for children who are inpatients of the Great North Children’s Hospital
•  Staff being trained in Equality and Diversity etc

Support for Parents/Carers:

• The Newcastle Parent Partnership provides information and support for parents/carers of children and young people with special education needs.
• There is a Parent/Carer Participation Worker for children with disabilities.
• North East Special Needs Network provide support to parent/carers of children and young people with disabilities.
• Partnership arrangements are in place with the voluntary sector to provide short breaks for children with complex health needs.
• The Direct Payment scheme is now 50% of all children with disability commissioned services and shows a determined year on year incremental growth reflecting direct payments as a growing choice for parents. Direct payments  also appear to be reaching some groups such as BME families who traditionally have not accessed services. The increase in payments suggests that families find this a valuable resource and appreciate the flexibility that it gives them.
• The Individual Budget pilot completes in March 2011 and the 21 families using the pilot report that their increased choice and control drives better outcomes for disabled children
• The Investing in Children Accreditation is increasing among services for children and young people with learning disabilities and difficulties.
•  Key working arrangements are receiving positive feedback.
• There are clear governance arrangements established for learning disability and difficulties services.
• An Attention Deficit Hyperactivity Disorder Pathway is being developed.
• Joint commissioning arrangements including pathways for children with life limiting conditions.
• The High Care Needs System ensures multi-agency assessment and service planning for the child with the most complex needs.
• The Children with Disabilities and Special Needs Management Partnership ensures a cross agency strategy for LDD children is being delivered.
•  There are clear lines of governance between the Parent/Carer Participation Group and Children with Disablities and Special Needs Management Partnership.

The Transition Steering Group is now well embedded and there is an agreed set of priorities informed by parent/carers, children and young people.

What should we be doing next?

• Maximise opportunities for regional learning Aiming High agenda; liaise with neighboring pathfinders and networks already established.
• Build on regional networks highlighting good practise examples e.g. Palliative Care Network.
• Identify opportunities to share skills between specialist and universal services to achieve more inclusion service provision.
• Build upon the growing choice for families towards personalization by developing the infrastructure to support direct payments as a growing share of the social care market and extend Individual Budgets beyond the Pilot.
• To develop local community activities for children with disabilities through the development of joint working between social care, health education and hub organizations in sports, information, arts, community development youth and play services.
• Build on current practice to involve parents/carers, children and young people in all core activities.