What causes a learning disability? Most incidents of learning disability are caused by chromosomal and genetic errors. Of these, Downs’ Syndrome is the most common form of learning disability. Others are caused during pregnancy (pre-natal) e.g. foetal alcohol syndrome, and during or after birth e.g. birth trauma, accidents and infections. For many people with a learning disability the cause is often unknown. How many people have a learning disability? It is still common practice to rely solely on IQ when determining whether someone has a learning disability, rather than using adaptive behaviour tests in conjunction with IQ tests. Based upon the IQ classification, the prevalence rate for Western countries for people with mild to moderate learning disability (IQ 50-70) is 30 per 1000 of population and for people with a severe learning disability (IQ < 50) it is 1 per 1000 upward pressures may be attributed to: The greater incidence and survival rate of children with severe learning disability and complex health needs (Robertson et al, 1992). Increased life expectancy of people with severe learning disability into mid and old age (Janicki et al, 1999) A bulge in the UK childhood prevalence of learning disabilities for births between the mid 1950’s and mid 1960’s. (Fryers, 1993). Higher prevalence of rates of severe learning disability amongst South Asian communities in the UK (Emerson et al, 1997). Increases in average maternal age. Increases in the number of children growing up in poverty (Policy and Practice Statement), Increases in prenatal threats of substance misuse (Policy and Practice Statement). Downward pressures are also prevalent and will have an impact: Impact of pre-natal screening for Down’s syndrome is estimated to reduce the natural rate by 0.5% per 1000. Improved health care and support resulting in fewer ‘at risk’ infants developing learning disability. However, increased life expectancy for people with a learning disability is significant and outweighs any downward trends.
For the parents who want to see their son/daughter move on, it is important that they live with friends they know well. One parent mentioned the usefulness of getting together with other parents to match up people in this way. Many parents mentioned that they did not want their son/daughter to live with people with challenging behaviour. Current options are sometimes perceived as not suitable for all, too inflexible or not available. Most parents said they would go to Social Workers/Care managers for information, but felt that they were too narrow when considering options. 5.4 A co-produced Supported Living Re-modelling took place in November 2015 and all stakeholders agreed the following way forward: Families work together in local community to commission accommodation, cluster housing Making better use of Local Area Coordination for people with a learning disability Live close to facilities, amenities Everyone to have accommodation – plan for new transition people Utilising student areas and accommodation Google ‘map’ of service providers Using students – voluntary or contractual Highlight where the guys we support currently live Providers to coordinate around social activities Bank of potential staff (held by Jobcentre?) Providers to work together around training Doing more to champion care as a Career – 16 + People we support, do they live? Affecting support, night support, shared support at night? Direct payments – shared support What is a volunteer? Self-organised groups Using time credits to encourage volunteers to exchange skills and time Using students/volunteers to live rent free in a service provider home (night support) Sharing transport – or use funded community buses Fundraising and students volunteering, getting time credits What can people with learning disabilities do for others? Get more people involved in Time to Meet Issues for commissioning from Supported Living Event Geographical approaches to supporting people need to be pursued and as a start we need to map where people currently live Support arrangements need to be more varied to maximise social networks and community integration – don’t need to depend solely on staff Support providers to collaborate more in the delivery of services
Chapter 6 How well are current services (across the four tiers) delivering these outcomes? Commissioning and Service provision have moved to an increasingly outcome focused way of working and systems and processes are being developed to support this. Some of our contracts are outcome focused and performance is measured against the delivery of outcomes (particularly in Supporting People). The new Supported Living Framework sets out clear expectations of an outcome focused, approach and performance will be measured against outcomes at an individual and strategic level. However, this is not currently routine it is therefore difficult currently to be certain about how well current services are delivering outcomes when outcomes are neither expressly specified nor measured across the piece. We therefore asked people who access services, family carers, providers and commissioners how well current arrangements were delivering outcomes for people with a learning disability: Strengths 1. Range of services Diverse range of support Support for people to live at home Offers chance to socialise 2. Quality of services Responsive service/ listened/gave information Weaknesses 1. Services Services too spread about Changes/shortages in staff Residential care is usually institutional Lack of compatibility in supported living Staffing levels too low
Services are enjoyed by people Support skills development Within the community Consistent/reliable Sharing staff across services Standards Buildings used as common resource Location of services Stability of services Day services Respite Staff are always positive Seasons in the city service good at supporting people to integrate into the community through skills development 3. Staff Good Knowledge/skills/experience Know each other well Common purpose Friendly, kind/caring 4. Planning/assessment Are what area you would like to live in Good planning/transition Management of health needs Social worker support – approachable, knowledgeable, contactable 5. Contracting/monitoring Monitoring of services 6. Carers centre Impartial They do it because they want to 7. Families Supportive 8. Human swap shop events Not enough provision for young people Lack of choice Too much dependence on volunteers Buildings need repair Less individual opportunities Respite – not enough Lack of opportunities Lack of sustainability Lack of autism services Lack of access to work opportunities Inaccessible Services can be too noisy and sometimes people talk behind our backs 2. Information Don’t know what is out Lack of communication – not knowing what is happening 3. Funding Funding not stable Short term projects – lose expertise Complexity of funding Not enough funding but critical and substantial are met 4. Planning/remodelling Lack of planning Lack of empathy Too many changes Imposed change Not enough peer Lack of honesty from management Process led Adults services disjointed- no continuity/case management Fragmented services 5. Health Lack of knowledge within primary care of the needs of people with a learning disability Not enough health therapists 6. Assessment and Care management