As a child with health needs approaches 18 years of age, plans should be in place to transfer their continuing health care to adult services. This forms part of the process called Transition – which covers social, education and health needs.

The Transition process with respect to social and educational needs should ideally start relatively early, perhaps when the child is 14 or 15 years of age, so that by the time they are 18 their needs continue to be met without any apparent loss in continuity of provision. You should have a Transition worker appointed to help you through the process.

In terms of healthcare needs, part of the Transition process is to determine whether the child’s continuing health needs in adulthood should be funded solely by the NHS through Continuing Health Care (CHC). If not then they will be offered a combined package of social and health care to meet their on-going needs. This is important to understand because while any social care funding is means tested, health care funding is not.

Therefore if a young adult with learning difficulties or special needs is assessed as being eligible for CHC, then all their needs – health and social – will be funded through the NHS. If, however, they are not deemed eligible for CHC, then that proportion of their package of care that is funded by social services will be means tested and they may have to contribute part of the costs.

You may believe that your child is not be eligible for CHC because they live with you and you have managed their health care needs adequately in the past with minimal NHS input. This is not true. The National Framework Guidance on CHC states that “well managed needs are still needs”. In other words, health needs must still be met by the NHS and funding cannot be denied just because these needs have been well managed by the family or other carers in the past.

Continuing Health Care

The process by which the decision to award CHC is made should involve a full assessment by a multidisciplinary team. This should include a minimum of two different health or care professionals who are already involved in the individual’s care in order to build an overall picture of their needs.

In addition, the assessment will involve the use of an assessment tool called a “Decision Support Tool” or DST. This is a rather cumbersome assessment tool and is also rather generic – not necessarily being appropriate to assess the needs of, say, a young adult with Profound and Multiple Learning Difficulties. However, it is the only assessment tool available and so it is important for you to get involved early and complete it as comprehensively as possible, ideally with professional help (doctor, physio, OT, etc). Be aware, the DST is NOT a Decision Making Tool and so you should ensure that it is not being used by itself as a substitution for professional judgement. To this end The Department of Health have issued guidance regarding its use.

Ultimately, the decision making process is subject to law. The legal jargon which is a little confusing was clarified in a Court of Appeal judgement (Coughlan – 1999). This basically stated that if the health needs of an individual are more than just “incidental” and/or are of a nature that is beyond what social services are capable of providing, then that care cannot be funded by social services. In fact, it is illegal for social services to do so and care must be funded by the NHS. The Care Act also re-iterates this point – that it is unlawful for social services to fund that which should be funded by the NHS.

In practice, therefore, to qualify for CHC, the health needs of an individual do not have to be particularly demanding, but if they are nevertheless beyond the capability of what a care worker or other social services worker can provide then the NHS has to take responsibility through CHC. This concept often forms the crux of a decision about whether to award full CHC funding or not and, not surprisingly, is usually where commissioning groups tend to vary in their interpretation of the law.

Finally, a technical point, in law a learning disability is considered an illness (Section 275(1) NHS Act 2006 and s1(2) Mental Health Act 1983). Therefore any decision that appears to ignore this in assessing healthcare needs is illegal. It may also be breaking the law in relation to the Equality Act. You do have the right to appeal decisions about CHC that you feel are wrong.
For those navigating this particular traumatic process here is a great lecture on the NHS Continuing Health Care and the Law.
Thanks goes to Martyn Newey for writing this section.
Change to benefits
Once your child turns 16 there will also be a change to their benefits. They will no longer be eligible for the Disability Living Allowance, instead they will need to apply for the Personal Independence Payments. The amount you get will depend on the level of care needed and more information about PIP can be found below.
Personal Independence Payments