Transitioning from Children’s Services to Adult Services
Transferring from children’s services to adult services when you have a learning difficulty can be a daunting and challenging experience, particularly in healthcare settings.
Your child may have been under the care of children’s healthcare services for many years. These provisions are set up and designed to be user friendly and person centred. The professionals in this field are trained to high standard and to accommodate reasonable adjustments as a supportive measure of individuals needs. Also, it is more common for professionals within children's services to have learned and established strong relationships with the children and their families they support, improving the effectiveness of multi-agency care planning for the child.
Expectations Post-18
If an individual who is reaching the legal age of adulthood but their brain development, emotional regulations and decision-making skills are that of a much younger age, the adult world and what is expected of them is extremely different to that of being a child.
It is assumed that every individual has full decision-making capacity when they reach 18 regardless of their actual developmental stage. Parental legal rights and responsibilities automatically end in many jurisdictions. The gap between the legal assumption and the actual ability can leave an individual vulnerable.
Ill-equipped
It has been my own experience with Connor transitioning from children’s services to adult services and speaking to other parents going through this, that adult services at times can feel ill equipped to address specific needs. There can be unrealistic expectations of how an individual should behave and be independent simply because they are now an adult.
I personally have felt that there were far less clinical staff that were trained on how to interact and support someone with a learning difficulty in adult services. Also, there were far more time restraints on appointments for Connor, despite the need to have this reasonable adjustment in place because of his lack of understanding about what was happening. Due to these time constraints, the experience became more stressful for us both.
Prior to each appointment he had, I always called the department and explained that he had very little understanding of medical appointments and as he was non verbal, more time and patience would be required. At times, healthcare professionals would adjust appointments to meet Connor's needs, however on other occasions we would have to cancel the appointment entirely and rearrange so they have more time to address his needs.
Planning
Planning ahead is crucial to mitigate these challenges. It will involve co-ordinating across different services to make sure any new medical team knows and understands the complexities and the time scales needed for any medical examination.
There are options to be a legal representative by becoming a deputy of health and welfare and finance. This option is available if the person you are caring for lacks mental capacity, however it is costly and you will need to pay the application fee for two separate applications, if you are applying for both welfare and finance. You may be able to get help with fees if you are on certain benefits. To find out more please use the official gov website on www.gov.uk.
Reaching out
It can be a scary time because of all the unknowns and different teams to work with but please reach out so you don't feel you are alone. There is help and support out there and please remember, you know your child better than anyone. You are the expert in their care so everyone else needs to listen to you about their care needs. Do not be afraid to question or tell them how it is. Moving into adult services should work well if supported and managed in a way that involves understanding, acceptance and patience.
Please see the Useful Links page for more services that can support you and your child during transitions and more.
