1
/ Muscle Group:South West
The voice of people with muscle disease – fighting for better services
Brief for Respite Care in Young Adults
July campaign 2009
Summary:
‘Carers need a decent income, the ability to continue working, back-to-work support, health checks and better support from the health service for their own health. They need better information about housing and about their rights, and skills and confidence, too.’[1]
· The Muscular Dystrophy Campaign recognises that there is a lack of programmes for the transition from child to adulthood for those who seek “short break care”. “Short break care” is a service provided to the disabled child in order that the person with parental responsibility for the child has a break from caring.[2] Between the ages of 14 and 18 there should be aid to help the young person progress into the adult care system, and then a full adult support network once they reach their 18th birthday. However, there is a gap within the system that leaves young people unsupported once they reach 18, and with little to no help through the transitioning period. Transitional care and support could help the majority of young people to progress into adult care, in a way that is comfortable and positive for them. During in this period the carers should be given adequate respite opportunities and full involvement in the process.
‘An Act to make provision about the delivery of local authority social work services for children and young persons; … to make provision about the enforcement of care standards in relation to certain establishments or agencies connected with children.’ [3]
Why the Muscular Dystrophy Campaign are campaigning on this issue:
· After the 2008 Muscular Dystrophy Campaign survey and press release it has come to light that young people across the country are not receiving the transitional services and care that they need to help them to move from child care services to adult care services.[4]
· The decisions are being revoked from primary carers [usually parents] and given to the young person with little or no guidance as to what options are best for them.
· The age group that should be receiving transitional help, between 14 and 17, the Muscular Dystrophy Campaign survey 2008 shows that in the South West of England only one family were happy with the support and help that they received. In addition, within the same area over 70% of respondents eligible found the service poor, very poor or unavailable to them. [5]
· Within respite care there is gap in the knowledge and resources especially in the South West for children with disabilities. Especially present within initial contact for carers and parental positions.
· Many young people are unaware that there are services out there to help them to make these choices, but also there are many counties, particularly in the South West of England, where there is little to no help at all for young people.[6]
· Respite care, or ‘short break care’, is provided for children, although the amount of respite and to what degree, be it residential, family link schemes after school clubs, varies from county to county. There seems to be little consistency within an area, to the extent that even within a certain county the support for children with certain types of disability may be more likely to receive care than others. For example those with learning disabilities, are more likely to receive care than those with physical disabilities, such as Muscular Dystrophy, in the Wiltshire area. [7]
Public opinion on transitional and respite care in the South West:
· I am a parent of a 15 year old with Duchenne’s, I work for social services and work with people who have physical disabilities. I am ‘in the loop’ as to social services and what is available. I find there is no local respite unless you have learning disabilities and initial referral for Occupational Therapy services took 2 years as Occupational Therapy was first step to diagnosis. […] The services in Swindon are very poor the hospital Great Western is of no use what so ever and I am lucky I can take my son to Oxford.[8]
· There is no signposting or co-ordination; I have found most of this out by myself with no support. There seems to be plenty for people with learning difficulties but not physical disabilities.
Radical change needs to happen in the South West in order for us to be parallel with the rest of the country. Children’s lives are being cut short due to where they live, in this day and age that is a crime.[9]
· Up until my son was 15 we had no respite care, nor any kind of transitional input. At 15 we made a formal complaint and were given our first social worker who was unable to help with any of the transitional issues that we were going through. We had to put in another complaint and at 171/2 years old my son is now receiving some transitional care, in which the social worker collaborates with the adult services to enable transition to occur. We are hoping to receive theIndependent Living Fund, which my son is entitled to from the age of 16, he is now 17 and half and we are still waiting. It appears that there are lots of new forms that need to be completed when transferred toadult services and no one seems to be familiar with them, so everything takes longer. It has taken 2 months for the relevant forms to be completed as we needed to have a social worker, and nurses from both adult and child services present, all these professionals are busy. There seems to be a lack of knowledge in the area of transition, which is not helpful to families. I have been told that in adult services the Occupational Therapist service is patchy and we will not have a physiotherapist, I am hoping will still have a social worker.[10]
Areas of Concern:
Most concerning is the local councils’ inability to be able to be involved in the process and the feeling that most carers are left to tackle this period of their child’s/young person’s life alone. Within this area the problems that young people and carers face may include:
· When transitioning to adult care most young people have to be reassessed and this can take in excess of two to three months, this is once the social services recognise that the young person in question needs to be assessed, which is usually instigated by the parents, carers, schools or the young person themselves.[11]
· In most cases within areas such as the South West there are minimal transitional services, including places such as Wiltshire where there is little to no support for young people, also there is a stronger focus on learning disabilities over those with physical disabilities.[12]
· In numerous places around the South West the transitional care that should be provided is in the developmental stages rather than being readily available. Which puts carers and young people alike at a disadvantage with regards to knowledge of the processes and support that should be available.[13]
o Local council support and help:
§ Of the Local councils that were surveyed 75% returned calls, or were able to speak about the transitional periods and respite care within their community.[14]
§ Of the 75% who were available, only one [Somerset County Council], was able to talk in full about the kind of care that should be provided, and the different stages at which a child/young person would need support.[15]
§ In all cases there was a great deal of effort involved in trying to reach the relevant member of staff to speak to, including, in some cases, this included speaking to staff that were unaware of the term ‘respite care’. [16]
§ One council refused to speak in detail about the care and support they provided and asked that the information was obtained via the Freedom of Information Act.[17]
§ In only two cases was there mention of schools being involved in referring the young person in the transitional stages of care.[18]
§ In most cases the child/young person will not be assigned a specialist social worker for the transition period, in some cases they may use connexions, but usually instead of a social worker.[19]
· There are a great number of aids that families are not being made aware of such as: ‘the duty on local authorities to appoint a personal adviser and keep the pathway plan under regular review to young people who are former relevant children (i.e. care leavers who are over 18) and who start or resume a programme of education or training after the age of 21 but under the age of 25 years.’ [20]
Government Promises for the next 10 years:
The Government have made a series of commitments, aims and goals which they wish to attain within the next 10 years the most momentous of these are:
· Carers are unable to access the kind of support which allows them to re-charge and renew themselves, [the Government] are taking immediate action to double our support for respite care over the next two years with an additional £150 million of new funding.[21]
· By March 2011, [the Government] will have invested over £1.7 billion for councils to use to support carers in a range of ways through the annual Carers Grant.[22]
· This includes £25 million a year announced as part of the New Deal for Carers for the emergency break provision.[23]
· [The Government] have also committed a further £22 million to cover the costs of the establishment of information services via a helpline and a training programme for carers and information service.[24]
Ways to get involved:
· Write to your local MP asking to write on their behalf to the local council, underlining the urgent need for additional respite in the South West.
· Write to your local council asking for more information on their transitional period facilities.
· Talk to your current respite centre about ways to continue the care you already receive, or how to transfer onto another centre.
· Speak to your local connexions facility about transitional periods and the support they can offer.
Conclusion:
If the Government can produce the promises that they have suggested are necessary features of supporting young people with disabilities, then carers will have the opportunity to have respite periods and be able to care for those who need it to the fullest of their ability. Although the Government has made some promising steps toward issues that are important, it does not tackle the problems that surround the most important part of a young person’s life. They do not deal with the transition from being a child to becoming an adult. At present the Government is not able to control a consistency throughout the UK, particularly in the South West. There are large gaps in resources which will be aided by the money that the Government has promised. However, and more importantly, the lack of useful knowledge that both professionals and those affected by disability have, including those to have a disabilities as well as the families and carers, is a far worse concern. The Government needs to make more information and more informed, quality staff available to as many disabled young people as possible. At present the services looked at are substandard, according to those who have dealt with them, and whether the Government can see these issues as real concerns is debatable. The South West Muscle Group is calling on local councils across the South West to ensure that respite care is available for all families living with muscle disease.
Appendix:
Call Table for Conversations with county councils:
County/ City Council / Brief notes of the conversationBath / · No response
Bristol / · Spoke to 5 people in total
· One did not know what ‘respite care’ was
· Minimum of 6 weeks to be assessed (this is classified as immediate)
· Only take them up to their 17th birthday (by law it is 18)
· Up to 120 days respite/short break care
· Done by individual needs/circumstances
· Adult Link schemes were mentioned
Cornwall / · Spoke to 3 people in total
· Immediately respite care can be provided
· Monthly panels for residential respite care
· Takes children up until their 18th birthday
· Assessed on level of need (severity of disability)
· Out of school clubs and carers grants were mentioned
· The rest I was told to go via the Freedom of Information Act 2000
Devon / · No answer at first, second day tried again, received response.
· Spoke to a total of 5 people
· Takes children up until their 18th birthday
· Up to 50 days respite/short break care
· At 13/14 transitional care should start, but only if the child is thought to be a complex case.
· 42 day waiting period for assessment for respite
· Reassessed annually
Dorset / · Spoke to 3 people and received a call back
· Takes children up until their 18th birthday
· Available to all children who need the service
· From 14 they work with connexions during the transition period.
· At 16/17 adult services take over the case
· Reassessed & reviewed annually/biannually
· Spoke of the school being involved in the process
Gloucestershire / · Rang 3 times, then received a call back, spoke to 6 people in total
· Unable to speak to anyone about transitional care, as they were not available
· Takes children up until their 18th birthday
· Short break care discussed
· Family Link schemes, inclusion grants, direct payments, outreach services, contract carer schemes, numerous residential sites, with an approx. total of 12 beds
· Only 2.5 contract carers
Plymouth / · Spoke to 5 people received no call back
· Spoke initially to some one who did not know what ‘respite care’ was
· No response
Somerset / · Spoke to 4 people, received a call back
· Scheme has been in place for 6/7 years
· Takes children up until their 18th birthday
· Links with schools, and annual reviews with schools
· Starts transition period around 14 on recommendation of the school, introduced to connexions
· At 16 a social worker from adult services is bought in to help with the transitional phase
· At 17-17 ½ the young person is reassessed on the level of care needed during and after the transition
· Transitional meetings held 4 times a year for improvements to the system
· 5 year forward planning for what will come up in budgets and continual contact with DH and local PCTs.
· CHC screening for higher level cases.
· On 18th birthday transferred over to adult services.
· Maximum of 121 nights respite care
Wiltshire / · Spoke to a total of 10 people with call back received
· Given 9 different numbers to contact as they were unable to help with general enquiries
· Takes children up until their 18th birthday
· Unable to say whether there were any services for children with physical disabilities, rather more, focused on children and young people with learning disabilities(LD)
· Transitional care is in developmental stages, however, only for young people with LD
· Assessment time 7 working days
[1] Baroness Pitkeathley (25th June 2009), debate in the House of Lords, http://www.theyworkforyou.com/lords/?id=2009-06-25a.1672.6&s=dementia#g1700.0 accessed on 02 July 2009