Independent Living Review – a response from the Equality 2025 Early Years, Education and Transition Sub Group – April 2007
Independent Living Review
The ILR sets out six proposals to address some of the barriers experienced by particular groups of disabled people. These are:
· Promoting choice & control for young disabled people with 'complex healthcare needs' in their transition to adulthood.
· Early and continuing support for parents with learning difficulties to enable them to meet their children’s needs
· Advocacy support for people with mental health support needs to enable them to remain in employment
· Investing in advocacy, support and brokerage services by ‘user-led’ organisations in order to promote choice and control over support needed
· Investing in housing adaptations and housing related equipment in order to prevent accidents, ill health and increased dependency
· Enabling older people in residential and nursing care, to exercise choice and control over the support they need including where they live.
The Early Years, Education and Transition Sub Group focused on the first four of these proposals because they consider they have particular implications for disabled children and young people and disabled learners generally.
This response also identifies areas that are missing from the list of suggested ILR priorities and we set out the case for inclusion of areas such as education, independent advocacy and resourced mechanisms for effective participation and engagement of disabled children and young people.
The key aim of this response is to ensure independent living will be understood in its widest context and that real choice and control will become a reality for ALL disabled people.
1. Promoting choice & control for young disabled people with 'complex healthcare needs' in their transition to adulthood
This is a group that is particularly marginalised when it comes to independent living debates mainly because health care needs are still not fully incorporated into the existing community care assessment which continues to be the gateway to direct payments and individual budgets. There is still some way to go for healthcare agencies to understand disability from a Social Model[1] perspective.
It is the case that despite an increasing focus on children’s participation in decision making both locally and nationally, disabled children and young people are much less likely than non-disabled children to participate at any level, particularly those with complex needs or communication impairments.[2]
The Government’s Every Child Matters initiative[3] has as one of its key priorities ‘making a positive contribution’ but, practical steps to make this a reality have yet to be implemented. Therefore, it is difficult to see how such an initiative, which is a central part of the Government’s change agenda for children, can impact positively on the lives of disabled children and young people without reference to accessible engagement mechanisms and all necessary supports to enable this involvement of the diverse community.
We think that it is unhelpful to focus in such a medicalised way on one particular group of children when it is a reality for the majority of young disabled people that they are virtually invisible in the decision making processes around transition. For example a recent Joseph Rowntree report highlighted that young disabled people are 3 times more likely to feel ‘that whatever I do it has no effect on what happens to me’ (JRF Nov 2005). This research was carried out with young disabled people aged between 14yrs and 19yrs from 14 different mentoring projects across the UK.
Evidence also shows that local authorities have failed to consult with disabled children in the development of their children and young people’s plans, as required by the Children Act 2004.[4]
Equality 2025 is disappointed that despite the newly signed United Nations Convention of the Rights of Persons with disabilities (UNCRPD)[5], no monies have been ring fenced for engagement with disabled children and young people initiatives in the recent Treasury review of disabled children services[6]. Article 7 of the UNCRPD (on ‘children with disabilities), clearly states an obligation on states parties to ‘ensure that children with disabilities have the right to express their views freely on all matters affecting them, their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right’.
We would like to see the ILR consider the independent living needs of disabled children and young people with 'complex healthcare needs', from a Social Model framework. More often than not disabled children and young people who are described as having ‘complex healthcare needs’ are those who require a combination of health and social support. This isn’t necessarily complex for the individual and their family rather that it is complex because of the difficulty statutory agencies have, with joined up working. We hope that amalgamating education and social support services into the new Childrens Trusts/Childrens Services Depts, will improve opportunities for joint working but there is still some way to go before healthcare is linked, effectively, to support a more holistic approach to service provision for disabled children and young people.
We would like to see all disabled children and young people prioritised in the promotion of their access to choice and control. Direct payments and the move toward individual budgets could be the drivers for that promotion but, the onus must be on local childrens services to promote these as providing greater flexibility and delivering health and social support that is more person centred.
It is our view that the views of disabled children and young people are often marginalised and ignored because of adult misconceptions around capacity to make decisions. Professionals will identify parents or those with parental responsibilities as the person who speaks on behalf of the child. However as evidence shows, parents can often be one of the greatest barriers to their disabled young people having choice and control[7] (of course taking into account evolving capacity of young disabled children). This is not to say that parents do not have an important role to play in ensuring that their child gets the right support, equipment, access to education etc. But, it is important for parents to recognise their key role in being an ally to their young person and preparing them for the time when they are able, with or without support, to become more involved in decision making about their lives. This is particularly crucial as disabled children and young people begin the transition to adult life and with that, the reality of taking greater control over their lives.
The role of education in independent living
We are concerned that the ILR appears to be ignoring the crucial 10 years of disabled children and young people's lives between Early Years provision and the start of the Transition process (primarily 13 to 19yrs). By ignoring the role that independent living can play in the educational life of disabled children and young people the ILR is missing the role that choice and control, can play, in relation to education and learning and participation in community life.
Choice and control must start with empowerment work which involves a combination of peer support, training and links into a network of disabled children and young people locally, regionally and nationally (see Equality 2025 “Engaging with disabled children and young people” paper). It also includes information about what it means to be a disabled person, and early work on decision making and taking control. This is particularly important for disabled young people who have additional support needs and are likely to become the next generation of personal assistant employers.
Disabled people’s organisations (DPOs) have a history of developing empowerment tools for disabled young people and adults – examples include “Young and Powerful” (Alliance for Inclusive Education), “All Equal All Different” (Disability Equality in Education) and others and this is why we believe DPOs to be best placed to deliver this type of work.
This type of empowerment work needs to begin at an early age for disabled children and young people to enable them to develop confidence around self identity and being involved in decision making about their lives. It does not mean without support if required – this is about identifying what support is necessary (including communication support) to ensure they are effectively included in transition decisions. The “Valuing People” team[8] at the Dept of Health are currently working on a National ‘Person Centred’ Transition programme, jointly funded with the DOH, DFES and the Learning and Skills Council, which is proving to have more positive outcomes both for the disabled young person and for the professionals involved who are beginning to recognise the long term added value of transition processes based on partnership working.
It is also important to highlight that the move from Early Years (age 0 – 5) to primary education (age 5 onwards) is also a transition point like any other and is just as significant.
It would be helpful for the ILR to recognise that the government’s recent SEN Strategy ‘Removing Barriers to Achievement’ (2004)[9], identified funding and set up Early Support Pilot Programmes which identified a key worker to support families of disabled children aged 0 to 5. These initiatives have been very successful but, sadly, some of them are starting to loose their funding streams to maintain these key workers. Equality 2025 would recommend that some of the £340 million new money for disabled childrens services as part of the Treasury Review [10] could be used to support this very important initiative at the local level.
A key aspect of this work has been around communication, in that parents and those with parental responsibilities act as the holders of their child’s information file which they then give to the relevant professional to read/take copies of as when appropriate.
It is the view of Equality 2025, in our role as the conduit for the voices of disabled people, that any new and sustainable independent living policy cannot ignore the need to support greater numbers of disabled children and young people into mainstream education settings. The confidence required to embrace choice and control and true independence in adult life cannot be delivered in a separate segregated education based on the medical model of disability where the culture of dependency and difference is central. Those disabled adults who experience segregation in childhood often find themselves in segregated day centres and Adult Training Centres, as adults, with little prospect or aspiration for the future – views that are encouraged by a segregated system of ‘care’ and education based on the Medical Model of Disability. This is evidenced by the data gathered from disabled people who have experienced special education in separate provision, by the Alliance for Inclusive Education[11].
Disabled people have identified 12 basic principles that, if met, would enable a disabled person to be able to fully participate in society.[12] One of these key principles is inclusive education and therefore it is crucial, in our view, that the ILR does not exclude it. The Government's commitment to equality for ALL disabled people by 2025 depends, in part, on what policies/resources are put in place to support inclusive childhoods for ALL disabled children and young people as a preparation for independent living as an adult.
Current polemic debates that only focus on inclusion vs segregation have taken away from the growing good inclusive practice in schools. The Dept for Education and Skills “Implementing the DDA in Schools and Early Years Settings” Training pack[13] is an important resource because it focuses on practical examples and highlights more than 40 schools that are including disabled children with a range of impairments and health conditions. Equality 2025 strongly advises that the DFES pack is promoted across all educational settings.
The new public sector duty to promote disability equality, which applies to education bodies, is also a crucial opportunity to work with schools and FE and HE settings to develop better, more inclusive support to enable disabled children and young people to participate equally alongside their non disabled peers. But, we are concerned that currently there is no national, regional or local mechanism for ensuring that educational settings are producing the legally required Disability Schemes (secondary, HE and FE settings requirement from December 2006. Primary, Special schools and PRUs from December 2007). Equality 2025 would suggest that the DFES and relevant regulatory bodies such as OFSTED work together to establish a monitoring mechanism that not only identified those settings that were not doing well but, also ensures that guidance is available to assist those settings to improve.
2. Early and continuing support for parents with learning difficulties to enable them to meet their children’s needs
We are aware of the overwhelming difficulties faced by parents with learning difficulties in trying to get the right support so that they can look after their children themselves.
These difficulties are set out in the recent research report Finding the Right Support (2006) [14] from the Norah Fry Research Centre. This research found that about a half of all parents with learning difficulties had their children taken into care often without the parents having been offered the support they needed to care for the children themselves.
Many parents with learning difficulties need ongoing, flexible support. A huge attitude shift is needed so that when parents need support to care for their children this is not seen as evidence that their children are at risk.
We fully support the excellent recommendations from this research, particularly the emphasis on involving parents with learning difficulties at all stages of service planning and delivery. We would like the ILR to have a role in making sure that these recommendations are carried out.
However, early and continuing support should be a priority for ALL disabled parents. The ILR must not ignore the many examples of disabled parents who are under threat of having their children taken into care or those disabled parents who have their parental responsibilities excluded from the community care assessment process.
We would also bring to the attention of the ILR the new obligations to support disabled parents right to a family life as stated in Article 23 ‘respect for home and the family’ of the UN Convention on the Rights of Persons with Disabilities[15].