Keep Thinking Families!!! Cally Ward Focus of the day Children and adult services will construct long term and collaborative plans across education, social and health services and jointly develop and commission support and services to meet the needs of children and adults with learning disabilities, their families and carers. Falling through the net My focus is on extending this vision to include families in the partnership and collaborative process ‘why have family carers got to be involved; this is a national strategy for people with learning disabilities’. Absent from the generic Carers Strategy Mental Health strategy does not include people with learning disabilities What I am going to talk about: • Why families are important • The long term nature of the caring relationship across the life course – support at different ages and stages • Understand the experience of families & the importance of hearing what they have to say • Understand the need to work collaboratively with families Emerson & Hatton (2008) Accommodation arrangements Mild or moderate severe profound All people With parents 48% 61% 60% 55% With other relatives 14% 11% 4% 12% With partner 6% 1% 1% 3% Alone 7% 2% 0% 4% Sub-total 74% 74% 65% 74% Supporting people funded 12% 8% 5% 10% Residential care 13% 15% 19% 15% NHS accommodation 1% 2% 11% 2% Total 100% 100% 100% 100% Private households Understanding the nature of the caring relationship caring for – caring about! • Family needs are diverse and complex • Caring within a family context is also complex and has been variously conceptualised along a stress versus altruism axis or more recently refocusing on reciprocity and in many older families – mutual caring. • Lifelong nature and usually continuous changing as families move through the life cycle • Limited but much needed research on caring relationship when people leave home A lifelong commitment – facing transitions in the caring relationship • Being told • When your child reaches school age & making choices about educational opportunities • Adolescence and moving into adulthood • When your son or daughter leaves home • Growing older together Families are important “Families are usually the main source of love, care and support for children and adults with learning disabilities. This is especially the case for people with complex needs. Even when people leave home, they do not leave the family. Families continue to offer a lifetime of involvement, support and advocacy.” “Valuing People Now recognises the important role that carers play and the importance of working with them….. .” Valuing People Now Disadvantage & discrimination • • • • • • • There are so many positive aspects of caring but research has highlighted the way families can be disadvantaged: High levels of stress in all communities Finances Health Isolation Housing Martial breakdown Situation for some BME communities qualitatively worse on a number of keys indicators: • High level of unmet needs • Poverty • Poor housing • Social isolation and lack of support • Lack of information What families say is important to them Family carers do not constitute a homogenous group and there are generational, class and cultural differences. However, some general issues can be identified. In research conducted by Grant and Whittel families identified the following as the things they valued and found helpful from services: •A proactive approach •Flexibility •Consistency •Accessibility •Availability •Reliability If you are not searching for it, it probably wont find you!! Mum – Umbrella Group - Derby What families say is important to them • Honesty • Respect for their opinions & perspectives • Respect for their expertise & experience However: Research in Bristol found that stress is caused more often by trying to deal with services than by the particular characteristics of the person with a learning disability. This is often reflected in the language that families use in relation to their contact with services –metaphors of war – battle – conflict rather than collaboration and partnership. Families don’t see themselves as carers. They see themselves as family members looking after their own! Getting the best for their family member Having their role recognised and valued & seen as key partners Having their own needs meet as ‘carers’. Families contacting the CBF 3 big issues 1. Current service provision not meeting needs & lack of local service development to provide an individualised service which is capable of meeting needs 2. Lack of information, training & practical support 3. Restrictive practices (inappropriate use of seclusion, physical restraint & antipsychotic medication) Current service provision not meeting needs & lack of local service development to provide an individualised service which is capable of meeting needs Adult: “My 38 year old sister has lived in several ‘specialist’ placements during her life to date, all out of area and a long way from her family. She recently moved again. Despite our whole family begging that somewhere be found near to her family we were told that there just wasn’t anywhere locally that could cope with her. I don’t think being miles away from those who love you is in anyone’s best interests and I’m sure if my sister could talk she would say the same.” Current service provision not meeting needs & lack of local service development to provide an individualised service which is capable of meeting needs Child: “When my 14 year old son goes to respite my husband and I daren’t venture too far, or let our hair down too much as you can guarantee we will get a phone call from the staff asking us to come and sort our son out. When we get there (which can be anytime day or night) our son is generally in the bedroom with the staff guarding the door outside, he is in a terrible state, extremely distressed and often having soiled and wet himself and been left for some time. It is horrendous for our son and extremely upsetting for us, but we have no choice, this is the only respite on offer where they will take people ‘as bad’ as my son, even though they are obviously not trained to work with people whose behaviour challenges.” Lack of information, training & practical support Adult: “I rang the emergency duty social worker late one evening after my severely autistic son smashed a window in our home during an episode when he was extremely anxious and agitated. My wife and I are in our 60’s and were quite afraid and didn’t know what else to do. The social worker told us to call the police! We didn’t bother we knew that there would be nothing they could do to help. Once again we were left to deal with it ourselves.” Child: “Apparently, they don’t do carers assessment in this area” Restrictive practices (inappropriate use of seclusion, physical restraint & antipsychotic medication) Child: “I am really concerned about my son, currently at school he is strapped into a wheelchair nearly all day to “manage” his challenging behaviour. He does not need to use a wheelchair and I think there must be better ways to help him” Family involvement & collaboration • Planning for the individual person • Operationally – quality audits & training • Strategically – governance – commissioning and policy development Ten top tips for working with parents - CBF • • • • • • • • • • Share parents’ hopes and aspirations for their child Get off to a good start by making and maintaining early contact Be clear, accurate, open and truthful Keep language clear and simple so it cannot be misinterpreted – avoid jargon Take parents concerns seriously Be an active and empathetic listener Stay approachable and be contactable even if you disagree Personalise written communication and never use generic statements about a child Use your creativity to seek out the child’s views when appropriate Signpost parents to sources of independent advice and support Real lives… “Valuing People is a nice document – but we have shelves full of those that say the right things. The challenge is translating it into practice - delivering it – so it makes a difference to my son’s life. Day in, day out. That’s the test – and I worry about all these changes, the cuts and the future.” Cuts in local services!!!!