Department of Health
Published: 16 May, 2014
guidance on transition to adult care and support
The Care and Support (Children’s Carers) Regulations 2014
Back to transition to adult care and support
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I believe that young adults aged 35 or under should have the cap at zero as it is unfair for them to have to contribute to their needs which have started before they could get their foot, if possible, on the career ladder. Whist this may be a bit higher in the age range with the recommendation made in the Dilnot Report, I believe it would be fair. For instance most common mental health difficulties start in adolescence and young adult, peaking at around age 35.
•Some further information about the Mental Capacity Act and how it underpins the Care Act perhaps in the form of a handbook or examples of best practice is necessary.
•It is of concern that there are not enough professionals who can act as independent advocates for young people. There is a different set of skills that a person will need to have in order to act as an advocate for a young person as opposed to an older adult. There is an opportunity when Local Authorities are drafting their local offers (Children and Families Act) to detail information about where these advocacy services for young disabled people might come from. Having to provide this information as part of the local offer would encourage Local Authorities to commission appropriate advocacy.
•The transition chapter needs a clear reference back to the personal budgets chapter of the regulations (chapter 11). This would help particularly in section 16.5 which encourages Local Authorities to put together an indicative personal budget to help young people and their families consider what support would be most beneficial. A reminder in this section that personal budgets need to be ‘sufficient’ is critical.
•Point 16.58 sets out how joint commissioning and planning can support young people to stay in their communities. This point must be rewritten and strengthened to reflect the fact although some young people will want to move away from their families others will want the opportunity to remain in their communities close to family and friends.
•We are pleased to learn that there is an increased focus within the Department of Health focusing specifically on Child and Adolescent Mental Health Services and transition to adulthood. We very much support this focus and are keen to support this work where we can.
Along with other posters, I too am concerned for young people and how the Care Act 2014 functions of local authorities and other public authorities (e.g. NHS and Housing Bodies etc) will work out practically on the ground (i.e. the interface) between these authorities’ corresponding functions under the Children and Families Act 2014 and guidance. I will now go into more detail about this and refer to them as the Children and Families Act and Care Act pathways.
For instance I am concerned for my patients who are between the ages of 18 and 25 and who may wish to have an EHC plan. How will the health and care parts of the EHC plans be contributed to by these authorities (or put it another way how exactly will these public authorities differentiate, practically on the ground, what needs and support outcomes will be classed as part of the SEN group [Children and Families Act pathway] and which fall under the NHS Continuing Care (Health) and Care Act requirements (Care) [forming the Care Act pathway] in the EHC plans). This is on the back of that frontline staff employed by local authorities will actually know about this interface between the two pathways and then be willing to insert the Care Assessment and Care and Support Plan into the relevant parts of an EHC plan. How exactly are frontline staff going to supposedly deal with such requests from young people in the first place? Will all staff across all divisions of adult health and care be trained on this interface? I feel this will be a feeding ground for disputes as the boundaries are ever so grey between both legislative pathways; ultimately to the disadvantage of vulnerable young people.
The guidance and regulations are very silent on the situation that some young people, regardless of their age, may have “educational needs” but may still not want to go for an EHC plan or even when they go for it they are denied one by local authorities. How are these young peoples’ needs going to be covered under the Care Act arrangements (this is on the belief that their needs first hit the very narrow national eligibility criteria threshold of course). I believe the current general wellbeing duty (aka wellbeing principle) is diluted by the fact that councils will not be bound to actually take any practical steps but just think about them. This is so easily suggested by the wording of point 1.16 in the guidance. I am also concerned on the lack of detail covering young people and how they may use the new tribunals systems if they are added as a dispute resolution process, after the initial pilots by the Government. Young people may potentially have to deal with separate parts of their EHC plans/Care Act assessments and plans with the First Tier Tribunals (SEN and Disability) and also the (Care and Support) one too; even though they are the one and the same person and so are their needs holistically. What collaborate working will be mentioned in any proposed tribunal procedure rules if any of these tribunals are given the go ahead nationwide? I fear young people will have to regurgitate a lot and this will lead to increased take up of precious court time and ultimately added costs in legal costs.
I am also concerned for my patients, regardless of their age (i.e. 17 and under or 18-25), and how they will also practically navigate between the two different pathways (Children and Families Act and Care Act). If they for instance qualify for an independent advocate under the Care Act (despite the term “substantial difficulty” not being very well defined in the regulations or guidance); will such an advocate also help these young people if and when their health and care needs form into an EHC plan. Or however will there be another independent supporter/advocate that they will need to get and regurgitate what has happened to them thus far; in order for them to get some sort of adequate support through the EHC plans pathway. This guidance MUST make it absolutely clear that such young people who may come under both pathways for whatever reason or whatever their age, they will have the right to an independent advocate who can manoeuvre through both legislative pathways. Navigating through the Care pathways as it is, is an absolute nightmare at the best of times especially when it comes to discharge planning for professionals but for a vulnerable young person to do that and have to with their difficulties is just something which is totally unacceptable in the 21st Century Britain. The guidance and regulations are extremely silent on the situation of how funding will be divided for SEN needs and Care needs in an EHC plan between children/education and adult social services departments. Internal pillar to posts scenarios are already common in this area. There is also no mention of when young people reach 25 or their EHC plan becomes ceased for another reason or simply a young person wants to go back to a Care Assessment and Care and Support Plan; then what this will mean practically on the ground for frontline staff. How are they going to deal with the possible ever increasing cases of this? In my experience adult social services staff do not know much about the current Learning Difficulty Assessments despite being in the legal machinery for nearly one and half decades.
I very strongly recommend for the guidance in this part and for the regulations to quickly act on the issues pointed out above.
The descriptions outlined in the guidance relating people’s right to transition assessments and beyond is relatively clear. More easy to read and accessible information is required around expectations and ‘local offers’ to not only potential clients and their carers but other agencies who may not be fully aware of ASC, services, signposting and community resources.
The guidance is very quite on matters like Disabled Students’ Allowance and the interface between this along with EHC plans and the Care Act regulations and guidance.
Children and adult social services must work together otherwise cases of maladministration may creep up causing further issues down the line.
The guidance has a strange lack of information for those aged at least 18 and who may be in contact/ would now make contact with adult services as young people age upto 25; and who may also qualify for an EHC plan under the Children and Families Act 2014. I believe this age range of 18-25 has explicitly been looked over in the guidance. Thus there needs to be more articulated guidance on the crossover duties, many that have already have been very well identified for those coming to their 18th birthday, for this age range who may need the support of adult social services and possibly NHS Continuing Care. We need to know how all this would then fit for them in the Care Act asssessment and support processes. Also as under the other Act carers in higher education (HE) could possibly identified more easily due to the carers policy such institutions will be required to have, this too has not been looked at in this guidance, on how young adult carers may wish to have their carers’ assessments and support plan and how councils should then liase with HE institutions. I also believe that for both young adults, including carers, the issue of Disabled Students’ Allowance (DSA) has not been covered in this guidance in the detail required. There has been no info on how, whether or not a person has an EHC plan or not or some disabled carers, may qualify for DSA and how this will play with care and/or support assessments and plans; as there will be no doubt considerable overlap between DSA and them (i.e. support in education, but also the wellbeing principle etc). There needs to be articulated guidance on the things per say the DSA may not fund as part of their scheme and if a person needs them then how they can acquire getting them if eligable through care and/or support mechanisms (i.e. plus DSA doesn’t just stop at the age of 25 you know?). On this final matter there has not been much crossover again between what the guidance explicitly states and what the CFA 2014 Code of Practices and Guidance; especially as there is some common ground between both systems like the trails of tribunals for young people for EHC plans and that with the lack of desired assessment/support outcome for care users. I also think just on the point around age 25, there has not been anything in this guidance on how adult social services, NHS Bodies and their partners like housing are supposedly going to deal with clients who may be coming to the end of their EHC plans or age 25 and the transition from them to Care and/or Support assessments and plans. This is going to be a crucial issue as time goes on for the reforms and without sufficent thought and further down the line training for frontline staff we could see a potential issue forming in the pipeline. Politcal cosequences aren’t going to be good for councils if disabled young people/carers (where appropriate) don’t have a smooth transition from one process to another, especially if they have been under the EHC/children services way of working for quite for most of their lives.
The guidance is clear in relation to people’s rights to transition assessments. What is of significant concern to Local Authorities is the proposal that from April 2016, people who turn 18 with eligible care and support needs will have those needs met for free by their Local Authority for the rest of their lifetime. Aside from the cost implications it is also unfair that people who do not come through the transitions process will have to pay towards their care.
Gateshead are already underway in responding to 16.78 framework for best practice, Gateshead allocate all LAC young people by their 16th birthday with their assessment completed by 17th birthday and for those accessing disabled children’s team they are allocated a transitions worker by their 17th birthday.
Transition is often a difficult process for those going through it and their families. It would be useful to have a handbook explaining the types of support available and importantly changes around decision making, assessing capacity and independence on reaching the age of 18.
I feel there needs to be more guidance on who is responsible for the transition assessment is this adult services/children education as the children act changes indicate one plan who is responsible for the implementation of the plan.
It is very clear with people with special educational needs who have an Education, Health and Care plan under the children and Families Act, preparation for adulthood must begin from year 9.
For other areas it states the plan will depend on individual circumstances which leave this unclear for professionals.
Whilst a stipulated age for transition is a procedural / bureaucratic necessity it should not be prescriptive.
Transition needs to retain the flexibility to be stretched to prevent a cliff edge transition. This will provide more effective and more reassuring support for those affected.
This is not clear from the current guidance.
Information sharing needs to be more responsive, particularly where transition also necessitates transfer between commissioned or contracted service providers.
Useful to have a heading in the guidance saying “Your Rights to a Transition Assessment…..”
Continuity of care – see section 16.64.
Consensus here was that the guidance is sufficient in this regard.
Felt that having a specific (sub) section on this in the guidance would be useful. As above, the information is there but identifying it isn’t as easy as it could be.
The feeling was that this part of the guidance (16.64 p.256) was both unambiguous and robust. This was a consensus view.
Paragraph 16.20: Change “should” to “must”.
What is “timely manner” – not clear. It is very open to misinterpretation – hope explanation is in guidance. Need to be more specific.
Recognition that everyone will be different and times may vary.
Should state that it should be no more than a specified time limit.
As this is about why an assessment cannot start it should not take long to respond.
Paragraph 16.16: change “should consider” in the phase “the local authority should consider indicating … “ to “must consider”
Paragraph 16.39: change “should” in the phase “children’s and adults’ services should work together” to “must”. The transition between adults’ and children’s services is where it goes wrong if the information is not transferred.
Information Governance makes information sharing more difficult.
Paragraph 16.49: There was a consensus that clarification was needed on the last sentence “…people who turn 18 with eligible care and support needs , will have those needs met for free by the local authority for the rest of their lifetime”.
Does this mean there will be no longer a financial assessment and will people still receive free support even if their financial situation changes e.g. receive an inheritance?
Does it include everyone who meets the criteria, with no exceptions?
Discussions made reference to the Coughlin Case where an individual’s support changed from health to social services and because health had stated that the individual would receive support for the rest of their life, the courts decreed that social services had to honour this pledge. Would there be any similar implications linked to this statement in the Care Act?
There seems to be little guidance on what process a family should follow if they are not happy with the referral (voluntary organisation). Other parts of the Act do specify how disputes are resolved so why can’t this section also specify a disputes procedure
Need to ensure that people don’t fall between the cracks e.g. home education.
There needs to be a system to track people to ensure they are not forgotten about.
Paragraph 16.17: The use of both “must” (“the local authority must consider whether the likely need and significant benefit conditions apply”) and “should” (“Transition assessments should be carried out early enough to ensure that the right care and support is in place…”) confuses matters. There should be consistency and the word “must” should be used throughout the paragraph.
Paragraph 16.19: The word “should” should be replaced by “must” in the statement “local authorities should consider how they can identify young people who are not receiving children’s services who are likely to have a care and support need as an adult”.
Paragraph 16:20: The word “should” should be replaced by “must” in the statement “Local authorities should consider how to establish mechanisms in partnership …”.
There was discussion on whether schools should follow the example of hospitals and complete an assessment for pupils with a care and support need or potential care and support need when they leave.
It was also recognised that there is a need for joint assessments with health, education and social care. Also need to be clear who will lead and initiate the assessment.
Overall it was felt the guidance was a bit woolly and lacked the clarity required to identify the overall responsibilities of the local authorities and other organisations to track individuals