Tag Archives: Transition

Joshua’s Transition: Part 2

Emma tells us about the challenges of transitioning from child to adult services. You can read part one here.

It is now the month before Joshua’s 18th birthday, so we really are on the countdown to adulthood now. We have recently had a weekend with a hospital admission for seizures, which brought home some of the reality of what is to come.

In the ambulance on our way to hospital there was a debate between the paramedics over whether my 17 year old son would be treated by children’s A&E or Adults. The paramedic was under the impression that, as he was still in full time education, he would still be treated by paediatrics but there was some hesitation over whether or not they would accept him, once we arrived. Apparently for our local trust, adulthood begins at 16 and, after some debate, with Joshua on the trolley, they compromised and accepted him into Children’s A&E, but they warned me, if he was admitted onto a ward, that it would need to be an adult ward. I just wanted my son to receive urgent treatment and so I accepted their contradictory and confusing distinction.

In fact, when he was settled and we talked more, once they found out that he was still under a paediatric neurologist, as we had not yet been transferred to Adults, they relented and we were accepted by the Children’s ward. This confusion gave me an insight of what may lay ahead in our future, with just a month to go until this critical birthday. It seems that Joshua currently exists in an odd limbo-land.

I took the opportunity once on the ward, to ask the nurses something that had been bothering me for a long time. I had been told on one of our hospital stays, that there would be no facility for me to stay with Joshua once he was an adult, if he requires any overnight hospital stays. I was reassured to hear that this was scaremongering and that this was not the case. Nursing staff would need me there to reassure adult Joshua and to act as his interpreter too.

I did have a glimpse at the future though, that Children’s A&E would be preferable as, as the A&E consultant explained that there would be “fewer drunks and druggies in there!”, the prospect of which sent shivers down my spine. I was much more comfortable surrounded by murals of jungle animals and smiling children’s nurses, even though he was clearly too long for their trolleys then hospital beds on the ward.

After this hospital admission, I chased both his paediatric neurologist and his children’s epilepsy nurse, to remind them that Joshua’s birthday was fast approaching. Both have now come back to me with dates when we will be introduced to the new adult specialist in March. I have also had a telephone review with the Continence Service to discuss a handover to the adult service, when a home visit will be required and no doubt, they will try to talk us out of the current continence products that we are happy with and that we fought for, for a year.

We have recently had the review meeting for Joshua’s Education Health Care Plan, where both his current and adult social workers were present. There was a great deal of discussion about Joshua’s future respite and daycare, once he leaves education. At the end of the meeting, the Children’s social worker bid me goodbye and wished me luck, as she will never see me or Joshua again, which was a strange feeling. In the run up to adulthood, I keep getting these little nudges or reminders, so that I am forced not to ignore it.

Thankfully Joshua’s current respite provision has some flexibility to extend his stays, to assist with his transition to an adult respite provision. I think that I have finally found somewhere that I could picture Joshua enjoying, that is just 35 minutes from home and so we have time to plan his future there and to prepare him – and me – for the changeover. I will be emotional when he finally says goodbye to his current provider and even in the EHCP meeting, my only tears came  when I tried to express what their service and care has meant to us as a family.

But then once that is resolved, we will have to turn our attention to the even thornier issue of how he will be occupied during the day once he leaves school at 19! Joshua does not have the capacity to go on to further studies or some form of manual employment, so it will only be about keeping him occupied and happy for the rest of his life. We will be looking to replace the role that school plays in his life currently: some reason to get up and out in the morning and somewhere where he meets and enjoys the company of his peers and caring staff, while they do fun activities. I cannot address that yet, but I know that it is on the horizon and I must not leave it until the last minute but tackle it.

School will organise “taster sessions” of some alternative providers. These are big choices that we will be making together for his future and it feels a heavy responsibility to get it right for him. I am hoping that once again, I will recognise the right provision when I see it, that it will give me that sense of ‘home’ when we look around. For me, when Joshua has found the right school and respite setting, then they have both felt like home and so sadly, this birthday he will be evicted from his respite home and next year, he will be evicted from school too. Thank goodness that there is a year gap between them as to lose both on his 18th birthday, would be so unsettling and would leave us in inevitable crisis.

So that is a blessing, as is the fact that we will be supported throughout the change. I was recently asked by a parent if I would advise them to get a social worker in place, now that her son was 16, in readiness for transition. Of course it would depend on how good the social worker was, but I would not want to navigate this change without somebody who knows the system at our side, fighting our corner. Because it will be a battle, no doubt, and so we need a coach shouting out advice from the sidelines and picking us up when we fall down.

You can read Emma’s past posts here and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.

Joshua’s Transition Part 1

Emma tells us about the period of transition that her son, 17 year-old Joshua is about to face and the services that are available to help the transition. 

Joshua

I have always feared Joshua becoming older as it felt like a step into the unknown. Every birthday sounded so much older than the year just gone, the jump from 9 to 10 years old for instance seemed enormous, but of course it wasn’t at all, it is just a number. Now the jump from 17 to 18 , where we are approaching now, that is a significant change. In the eyes of the law, Joshua will become an adult next March, when he turns 18. I cannot keep my head buried in the sand about this one, this change is approaching rapidly and so I need to face it head on.

“I don’t need to think about that yet surely!”

Even as young as 15/16, health and education professionals referred to ‘Transition’ and I tried hard to ignore them and joke that I did not know what would happen next week, never mind that far ahead. But the references to transition did not go away, they gathered pace and they cropped up when we saw his neurologist who would be handing him onto an adult neurologist, our children’s epilepsy nurse who has taken care of his seizures since he was 4 years old would be passing him on and in his Education Health Care Plan meetings, when they would ask what we wanted Joshua to do when he left school at 19? I wanted to shout out loud “Stop it, he’s only 16… I don’t need to think about that yet surely!!” We had finally got to a comfortable place – he was in the best school for him, we had found respite provision that suited us all and we had established doctors who knew and understood him – and now, because of an anniversary, everyone wanted to throw all that we had carefully built up into a big bag and shake it up. I resisted it with all my might.

Opportunity

Then something changed this May and I began to relax and embrace the change, to see it as an opportunity rather than a threat. This change was due largely to one person: a social worker who was allocated to us from ‘Futures Plus’, who would represent Joshua once he was an adult. She paid us several visits, getting to know both us as his parents and Joshua in his home, school and respite session. She always delivered what she promised to do and most importantly, she listened, giving us the time to explain how we felt or how things are, she even saw my husband and I separately, which  nobody has done before, to explore our very different perspectives.

Respite for young people

In my mind I had envisaged adult daycare and respite services as being grim places, where my 18 year old son might be mixing with 80+ year old dementia sufferers, with the staff trying to juggle their very different needs. Our social worker immediately explained that there were facilities specifically for young people  and so I relaxed and decided that Joshua might actually enjoy the next step of his life, rather than it being a necessary evil. She visited all of the local adult respite places and even rated them from her own perspective, but encouraged us to visit each one to make up our own minds. I am confident that she too is determined to find somewhere suitable for Joshua’s needs. We have prioritised Respite as his current facility cannot have him beyond 18, whereas he can stay at school , in 6th form, until he is 19 so we have an extra year to find daycare solutions. So far we have looked at 2 of the 4 in our local authority area and I plan to get round the others this month. Joshua had to go out of area for his current short breaks and we have been reassured that if there is nothing suitable locally, we can argue that Joshua’s needs can only be met by a provision out of area. So far I have to say that I have found nothing that comes close to his current provision. I will not compromise, he will not be going somewhere mediocre just because it is local. I now know what I am looking for, as we have experienced the best, and I will keep searching until I find it.

Change

I have never been good at change, it always seems to be forced upon us just when things are settled. I can recall begging Joshua’s nursery school head teacher if he could stay with her until he was 16 please. She replied kindly, “No Emma, he can’t, he will get to be too big for the furniture here”. We made the move to mainstream primary, then to a special school and then to his current special school so, given that I hate change, we have done a fair amount of it in Joshua’s 17 years and of course, we survived. The difference is that this time we have a social worker by our sides who will help us to negotiate our way through this mysterious maze and help to pull us through – I am sure.

As we approach March 5th, I will update you on how we are handling transition and will outline the highs and lows that we are bound to face. I sincerely hope that our experience may help some of you who might also have a son or daughter who is approaching this critical age. I do not want to scare those readers who have ten year-olds now, but this Transition will come much faster than you think, so it is worth thinking about it sooner, rather than later. If I had read that in 2011, I know I would have ignored that advice, thinking that it was not relevant to me, but I would urge you not to be an ostrich like I was. Perhaps you can learn from my mistakes, so that you can hear the ‘transition’ word without a shudder.

You can read more from Emma in her article ‘Introduction to us‘ and on her blog Ups and Downs Mum. If there are any topics you would like her to write about let us know in the comments.

Consultations – October 2015

Consultations are your chance to give big organisations like the NHS and other government bodies your opinions on things that matter to you to. This is our monthly round-up of open consultations that might be of interest to our members.

Managing Antimicrobial Resistance
NICE (National Institute for Health and Care Excellence) is consulting on new draft guidelines for managing Antimicrobial resistance – changing risk-related behaviours in the general population, including schools and childcare settings.
Closing date:  20 October 2015.

Transition to Adults’ Services
NICE is also consulting on a draft guideline for Transition from children’s to adults’ services.
Closing date: 22 October 2015.

NHS Maternity Review
The NHS in England is conducting a a review of maternity services, open to both users and providers of services.
Closing date: 31 October 2015.

Support to move on

support-signpostsFor 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.

Some strategies

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.

Further information

Transition – A Guide for Parents

 

Mother helping her daughter with school work

Mother and daughter studying together

The process of moving into adulthood should be an exciting and positive experience, but we know that it can be a very challenging time for disabled children and their families.

These families need the right level of support to continue during the transition from children’s services to adult services

Cerebra recently organised a series of successful seminars, delivered by the author of our Parent Guide on Transition to Adulthood, Camilla Parker, in order to help parents navigate the process.

At our most recent seminar in Bournemouth on 11 June, Camilla provided detailed information about the obligations of public authorities and encouraged delegates to contribute to the discussion and share their experiences of the transition process. Some of the issues discussed at the seminar included:

  •     how to ‘project manage’ the transition process
  •     key duties of public authorities
  •     decision-making and confidentiality issues
  •     ‘checklists’ to help prepare for transition in terms of education, social care and health.

We had some very positive feedback, with parents telling us how much they valued the opportunity to hear about other parents’ experiences and that they left the seminar feeling better equipped to deal with the transition process. To find out about Cerebra’s future seminars, conferences and other events, please have a look at our ‘What’s On’ section.

If you’d like some more information about the transition process, please have a look at our Parent Guide on Transition to Adulthood. The guide aims to help parents manage the transition from children’s services to adult services by providing an overview of the responsibilities of local authorities and NHS bodies, with a focus on education, social care, health and housing. The guide identifies the steps which should be taken by the various organisations at different stages of the process and includes checklists for parents, along with a downloadable table which sets out the key stages.

Our Guides are regularly reviewed and will be updated to reflect changes in the law – we’re always interested to hear your views about our publications and how you think they could be improved, so if you have any comments about the Guide, please get in touch with us.