Transition - From Children to Adult Services and from Local Authority to Health Funding
Moving from Children to Adult Services
Having to consider moving from children to adult services is hugely emotional for many Batten families, as it is also for the young person. Your child will have professional and support staff around them that they may have known for many years, alongside that families know from talking to each other how the level of support can 'drop off'. Adult services are very differently resourced compared to children services, that doesn't necessarily mean the quality is not there, but that the process of transition planning needs time and the Batten life path must be clearly understood to enable a robust support structure. Parents are also aware that the disease process, depending on CLN type may have been quite slow and almost benign in the early years (CLN3 and variant juvenile and adult types), but it becomes more complex as the young adult ages with higher physical and emotional needs, loss of communication skills and mobility.
The move to adult services happens on the person's 18th birthday, but the transition process needs to start at age 15 if the child is in mainstream education. If they are in a special school that has a college provision we advise parents to have a clear understanding of the age the young adult has to leave education. Some special needs colleges state 19yrs, other say funding can be available for further years up to 25yrs old, but in reality, one or 2 years are offered so some young adults leave at 21 or 22.
The local authority has a duty to ensure any necessary assessments are completed in good time, such as carers assessment, CHC assessment and capacity assessments at the age of 18 onwards. This assessment should provide information about what can be done to meet their needs. During assessment you will be asked about whether you would like your child or young person to stay at home where you can care for them, or whether you feel a residential placement is best. This can be a difficult decision for many families and each family is different. It is best to look into all the options as a family - as well as all the funding that you may be able to access before you make any final decisions.
Your hospital team should also plan for the transition and again, it's a good idea to start planning this well in advance. Even if your hospital does not run a specialised 'transition clinic', there should be a detailed handover, and your young person should not be discharged from paediatrics until their care has been transferred to adult health services.
Our Family Support and Advocacy team have experience in supporting the process of transition and can provide advice and support throughout the transition process, including remote support at all reviews and meetings, completing an assessment and supporting the development of the young person's care plan including anticipatory care needs to ensure adult services are informed and have time to plan.
You can get further advice and download supportive documents from Together for Short Lives.
https://www.togetherforshortlives.org.uk/resource/transition-adult-services-pathway/
Moving from Local Authority Funding to Health Funding
Most children with Infantile and Late Infantile Batten types will transition to health care earlier, and sometimes this is the case for CLN3 and other rare variants, but for most young people with a Juvenile or adult type, they may not meet the threshold for healthcare until later on.
What difference does this make?
Funding allocations through local authorities start mainly by accessing 'short breaks' this is money, either in the form of direct payment or on a special prepaid card that is allocated for specific activities in the local area. This can also include payment to paid support for a few hours each week or month, some individuals receive less depending on need.
When the child or young person has higher levels of need and more hours of care are required this, along with the acknowledgement that physical, health and social needs are more complex, should trigger the request from Social Care to Health to carry out a CHC assessment following the completion of the CHC checklist by the social worker with other key professionals involved in the child or young adult's care. If that demonstrates the needs have increased, the Nurse assessor will meet with the family and other key professionals from health (such as Physio, OT, Community Nurse, Specialist Nurse) Family and the BDFA Family Support and Advocacy team.
They will go through the Decision Support Tool, we advise parents to become familiar with this tool, found on this link.
https://www.gov.uk/government/publications/nhs-continuing-healthcare-decision-support-tool
If sufficient thresholds are met this will go to panel and if successful funding will change to health, this provides access to different levels of service such as loan aids for the home, and funding for increased levels of care, often this can build over time to provide 'at home' respite and can include skilled care staff and nursing staff if required.