For young people with additional needs and their families leaving behind the world of children’s services and voluntary organisations, how does the new support landscape compare with it? Cerebra’s support finishes after 16, during that foggy period up to the age of 18 or beyond when changes are occurring in the young person’s statutory service arrangements as well. Groups that support families beyond this age report a falling-away of statutory and other services for a variety of reasons. So what is there that can help to provide some continuity and underpin a young person as they move into the adult world?
Is it that bad?
In terms of how pertinent this issue is, it probably rates alongside all the other things that parents of teenagers with additional needs will already have had to fight about. Gaps after 16 or 18 can occur through going on to new waiting lists for adult services but no longer being eligible for children’s services; “thresholds” imposed by local services in order to manage service availability and budgets, which may be different for adults than for children; uncertainty between services about who should provide the service; different assessment criteria, or aspects of service that are not so readily offered past childhood; and new people to deal with, having an “adult”-type approach while a young person is still feeling their way through adolescence.
There is an added dimension for young people who find changes of scene and people to be very difficult and need a lot of support with this aspect of things. There is a need for, and a legal obligation on, professionals to listen to the voices of young people and the legal status, for most, of being responsible for themselves after 16; where this can cause a problem is when it is interpreted to mean that parents should be cut out of the equation, and that when interpretation and persuasion are needed, this should be done by professionals who do not necessarily know them very well or indeed, love them.
In theory, these factors could lead to isolation, to not taking up services that they are entitled to, to sub-optimal decisions, and/or to a lack of attention to carers’ needs, although there are other aspects to this question as well. Further and higher education providers may also underestimate students’ vulnerability (as in fact teenagers themselves tend to do), treating them as able to be more independent and proactive than they can actually be, for example with knowing what is happening when and where, or even with remembering that there is a letter in their bag that parents need to see. It should help if parents are aware of the possibility of these things happening.
The “transition plan” that some young people have in connection with a Statement / EHC Plan / Record of Needs / Coordinated Support Plan can assist in identifying the young person’s particular needs in relation to the steps they would like to take for their future education and training, work and living. Most young people with additional needs, however, do not have a formal transition plan, although schools do generally bring in elements such as work experience, careers and other advice for all their pupils as they get older. If your child is likely to need additional support in what they go on to after school, there is no harm in starting to look around from about Year 10 (age 14-15), particularly if a specialist college is one of the possibilities for them.
Cerebra’s transition guide includes options for education and training, work and living. Other guides containing relevant information can be found here. That includes information about the Mental Capacity Act, should you believe that your child will not be able to make decisions for themselves, and on making financial arrangements for them in advance of the changes.
Ways of providing continuity, as well as avoiding societal isolation, include becoming involved – in a “taster” kind of way perhaps, without taking on too much extra commitment – in something locally before the change takes place which can be carried on with afterwards, such as a club / hobby group or regular event that is not so age-dependent. Local intelligence from other parents and professionals, online discussion groups, local council websites and tourist information are some of the ways to ferret out what there is and what might be possible, not necessarily “for disabilities” per se.
If a move into the workplace might suit the young person, an Access to Work grant might enable them to do a job by funding equipment or other things they need to have access to it. Or there is a factsheet on the scheme from Jobcentre Plus. In England there is also a Traineeships programme for ages 16-24, . Some employers and employment services work with the British Association for Supported Employment (BASE), believing that with the right kind of understanding and support, a person with additional needs is more likely to be able to find suitable employment and stay in it. The BASE website includes a directory of these.
If progression to further or higher education might suit them, it could be useful to have copies of information from school etc., for example about the student’s attainments and needs, in case it otherwise gets lost in the next steps. As a part of the thinking about where to attend, it should be possible to get information from the students’ support services at each college / university under consideration about what practical, personal and financial support is set up there – for leisure activities, transport and other needs as well as for the course itself. There is a government website on general student finance.
Many voluntary organisations and support groups have experience of what other young people and their families have already discovered about the move into the adult world. If you find that there is a particularly difficult gulf between what should happen, with services or circumstances, and what actually does happen, a more legally-oriented service might assist with opening up the way.
Voluntary organisations to move on to
If you are still with Cerebra’s services and concerned about what voluntary support will be available after 16, please contact our helpline or a member of staff you know and we can provide some leads, but you might find that the information below is sufficient.
Even when you have left our direct services, Cerebra’s website continues to be available to all, and as above, some of the information there continues to be relevant even after 16. So do many of the conversations between parents on Mumsnet (list of conversations: http://www.mumsnet.com/Talk) and other discussion groups. For advocacy there is still the local Citizens Advice or Law Centre (where the latter still operate), or one of the sources of independent advocacy linked by Disability Rights UK. For legally-related information and advice, the Advice Services Alliance could point you in the right direction.
To find suitable support organisations (neurological, specialised healthcare, etc.) a good starting-point is in the member organisations of “alliances”. For example, there are: Neurological Alliances, http://www.neural.org.uk/ (all UK); Learning Disability Alliances, http://learningdisabilityalliance.org/ (England); http://www.ldascotland.org/ (Scotland); Together For You, http://www.togetherforyou.org.uk/what-is-together-for-you (Northern Ireland); Long Term Conditions Alliances, http://www.ltcani.org.uk/index.asp (Northern Ireland); http://www.alliance-scotland.org.uk/ (Scotland); http://www.solnetwork.org.uk/index.asp (“Solnet” Wales); http://www.nationalvoices.org.uk/ (“ERPHO” England); and Carers’ Alliances, which tend to be region-specific, found most easily by putting “carers’ alliance” into a search engine or going to Carers UK.
Specifically for local areas, there are CSV (Community Service Volunteers), and/or the local Association of Voluntary Organisations (search under “Voluntary Organisations” with the name of your county).
Among the individual voluntary organisations that have no upper age limit are most of the condition-specific ones, Mencap, Scope, MIND, Headway (The Brain Injury Association), the Epilepsy Society, and others.