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Camilla Parker, Partner, Just Equality 11 th June 2014

Transition to Adulthood: Legal, Policy & Practice Issues for Disabled Young People and their Parents. Camilla Parker, Partner, Just Equality 11 th June 2014. What is Transition and Why is it Important?. Entering into adulthood is a very significant time for all young people.

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Camilla Parker, Partner, Just Equality 11 th June 2014

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  1. Transition to Adulthood: Legal, Policy & Practice Issues for Disabled Young People and their Parents Camilla Parker, Partner, Just Equality 11th June 2014 Just Equality: Linking Law to Life

  2. What is Transition and Why is it Important? • Entering into adulthood is a very significant time for all young people. • This process, known as ‘transition’, may be difficult due to a range of factors such as the numbers of agencies and professionals involved (for example education, social care and health) and the different approaches between those working in services for children and those working in adult services • Young disabled people’s needs, aspirations and close relationships are likely to change as they move into adulthood. Some will wish to live independently from their parents or other carers, others may wish to focus on getting a job Just Equality: Linking Law to Life

  3. Frequently Encountered Problems • “Not untypically, councils simply fail to comply with their statutory responsibilities and even when the transition process is instigated, it is frequently characterised by delay, office turnover, a lack of incisive action, broken undertakings, ignored complaints and a persistent failure to locate suitable placements (which may require a very specific and costly package of care) during which the authority loses the ability to look at the ‘whole child’ and his or her spectrum of needs – and becomes particularly insensitive to the impact these failures are having on the family carers.” (Disabled Children: A Legal Handbook, 2010) Just Equality: Linking Law to Life

  4. Transition to Adulthood Just Equality: Linking Law to Life

  5. Improving life chances: 5 Key Messages www.preparingforadulthood.org.uk/outcomes Just Equality: Linking Law to Life

  6. Developing a Strategy for Transition • Have a goal: identify different options to explore • Project manage: get to understand the different stages: who should be doing what and when • Gather information • Clarity on decision-making and your role as a parent (this may change over time) • Persevere • [Key changes to law and policy: • Children and Families Act 2014 (main implementation date September 2014) • Care Act 2014 (main implementation date April 2015] Just Equality: Linking Law to Life

  7. Key Duties of NHS Bodies and Local Authorities to Young People in Transition • Act reasonably and lawfully • Comply with duties to co-operate e.g. NHSA s82, s28 CFA 2014 • Fundamental duties remain the same as YP moves into adulthood: • Assess YP’s needs • Put in place a care plan to ensure those needs are met • Use person centred planning (enabling YP to decide about life) • Ensure your child not affected by funding disputes (draft SEN Code 8.67: ‘under no circumstances’ suddenly w/o support as they move into adult services) If you are told that your child cannot be helped, or not in the way you think is best, ask for decision to be confirmed in writing, with reasons.

  8. Working with young people and parents • YP’s involvement is key (emphasised by law and policy): what steps are being taken to ensure your child is involved? • C&FA 2014 YP’s right to make decisions, from 16, but parents can still support YP/act on their behalf if YP happy with this (SEN draft Code 8.15 – 8.19) • Changing role and responsibilities of parents: are you clear on your involvement in the decision-making process? • Confidentiality and sharing information: are you being kept informed? If not, do you know why? • (Cerebra’s Decision Making, Confidentiality & Sharing Information Guide) Just Equality: Linking Law to Life

  9. Mental Capacity Act 2005 • Framework for decision making in relation to individuals aged 16 or over who lack capacity to consent • Decision specific – relates to particular decisions at particular times • If a person lacks capacity (defined in the MCA 2005) to consent to care and treatment it can be provided if this is in the person’s best interests • Limits on this; e.g. restriction of liberty

  10. Process of Ascertaining Best Interests • Avoid discrimination (assumptions based on age etc) • Consider all relevant circumstances, take following steps • If person likely to regain capacity can the decision be delayed until then? • Encourage individual to participate in decision • Consider, so far as reasonably ascertainable person’s past & present wishes, any beliefs & values and other factors • Take into account (if practicable and appropriate to consult them) views of others (e.g. carers) as to what would be in person’s best interests & person’s wishes • Section 4 MCA 2005

  11. Sharing Information & Confidentiality • You and your child should receive the information and support that you need to make decisions about your child’s treatment, care and support • Even with young children, health and social care practitioners should seek to encourage children to take part in decisions about their care and support. • Assessment of ability to decide: under 16 (“Gillick competent”), 16 & over Mental Capacity Act 2005 • Even when your child reaches adulthood at the age of 18, if your child lives with you, or lives independently but you provide care and support to your child, it will be essential that you have the necessary information to be able to continue in your caring role. Just Equality: Linking Law to Life

  12. Local authorities to support and involve children & young people: have regard to • The views, wishes and feelings of the children/ young people and parents & their participation in decision making • The importance of the children, young people and parents being provided with the information and support necessary to enable participation in those decisions; • The need to support the children, young people and parents “in order to facilitate the development of the child or young person and to help him or her achieve the best possible educational and other outcomes”. • Section 19 Children & Family Act 2014 (in force 1st September 2014) Just Equality: Linking Law to Life

  13. Checklist 1: General Preparation • Make plans for the future • Keep all relevant papers together • Seek additional support if needed e.g. • Assessment of your child’s health/social care/ learning needs • Your needs as a carer • Ensure your child is involved in decision-making • Prepare for meetings & follow up after meetings e.g. • Make a note of the points you want to discuss • Send email confirming agreed action points Just Equality: Linking Law to Life

  14. Children & Young People with SEN and disabilities: Children & Family Act 2014 • 0 – 25 years • Education, Health & Care Plans (as from 1st September replace statements and Learning Difficulty Assessments) • Transitional arrangements for those with statements/ LDAs – phase out LDAs 9/2016, statements 4/2018 • Joint Commissioning (s26 requires arrangements for education, health and care provision for CYP with SEN/ disability with and without EHC Plans) • “Local offer”: support for CYP with SEN/disability • Provision of advice & Information: SEN/disability • Draft SEN Code of Practice (chapter 8 focuses on transition) Just Equality: Linking Law to Life

  15. Implementing a new 0 to 25 special needs system -Local implementation (DH/DfE Guidance April 2014) • April 2014 – September 2015: LAs involve partners and parents in planning for reformed system. • From September 2014: local offers published; new assessment and planning starts (for new entrants); personal budgets offered as part of Education, Health and Care plans; mediation arrangements in place; LAs should publish plans for EHC plan transfers. • September 2014 – September 2016: YP with Learning Difficulty Assessments (LDAs) transfer to the new system.* • September 2014 – April 2018: children and young people with statements of SEN transfer to the new system. ** • April 2015: New duties for young offenders with SEN. * Prioritise this group, ** prioritise CYP in transition Just Equality: Linking Law to Life

  16. Transition to Education, Health and Care plans (DfE/DoH Consultation Oct ‘13) • “To allow a gradual and orderly transition for those with existing statements or LDAs to the new EHC plan, there will be a period during which both the new and the old systems operate in tandem. During this period, we will make legal provision to ensure that children and young people continue to receive the support in their statement or LDA. The legal force of these documents will not be withdrawn until all children and young people have completed the transition. Relevant elements of the current Code of Practice and the LDA guidance will remain in force during the transition period.” • “To make transition responsive to the needs and wishes of those concerned, we will ensure young people with SEN and parents of children with SEN have a say in how the process operates.” Just Equality: Linking Law to Life

  17. Implementing a new 0 to 25 special needs system: Local Offer to include: • Information on services across education, health and social care and from birth to 25 • How to access specialist support • How decisions are made including eligibility criteria for accessing services where appropriate • How to complain or appeal • Local policy on personal budgets – developed with parents and young people, describes relevant education, health and social care services, how funding made available, ‘clear, simple statements of eligibility criteria’ & decision making process that underpin them. • Support in preparing for adulthood & independent living (draft SEN Code) Just Equality: Linking Law to Life

  18. Education • All students - duty to secure independent and impartial careers guidance: Yr 8 (12-13 yo) to Yr 13 (17-18 yo) (from September 2013) – consider FE or HE options • Young People with a statement of SEN: statutory duties: • A ‘Transition Plan’ (TP) must be prepared in Year 9 and reviewed in subsequent annual reviews • A ‘Learning Difficulty Assessment’ (LDA) must be undertaken in last year of school • Young People with SEN but no statement: power to carry out LDAs Just Equality: Linking Law to Life

  19. Transition Plan: Health and Social Services Involvement • Social services: • LEA must ask them to consider whether YP is disabled, and may therefore require social services on leaving school (s 5 & 6 Disabled Persons (Services, Consultation & Representation) Act 1986) • The Head Teacher must invite them to Year 9 Annual Review so that any parallel assessments of YP’s social care needs can be undertaken • If YP already receiving social care services, social worker should attend & contribute to Transition Plan. • Health services: • Health professionals involved in YP’s care, should provide advice towards transition plans in writing and, wherever possible, should attend the annual review meeting in year 9. (SEN Code 9.60) Just Equality: Linking Law to Life

  20. Implementing a new 0 to 25 special needs system: Young People • Right to: request assessment for EHC plan up to 25, ask for particular school etc to be named in plan, appeal to Tribunal. • YP with EHC plans: • local authorities able to continue to deliver children’s services post 18 (CFA 2014 + Care Act 2014) • statutory guidance to make clear that “assessment for adult services should be aligned with the annual review of the EHC plan” • If eligible for adult services, care plan to “form all or part of the care element of the EHC plan” Just Equality: Linking Law to Life

  21. Checklist 2 - Gathering Information & Advice (Year 8) • Ask for information about transition planning • Has the school’s career advice service been in touch? • YP with SEN, no Statement: discuss needs with SENCO • Young people with SSEN: • request information on Yr 9 AR, (purpose, who invited/attending, have you been asked for written evidence?) • Has your child any particular health and/or social care needs? If so ask that the relevant health and/or social care professionals are invited. Name any specific individuals if you think their attendance would be helpful • When you are given a date for the Year 9 Annual Review diarise this and plan to start writing in preparation for this meeting 6 months beforehand. • (www.parentpartnership.org.uk/ )

  22. Checklist 4: Preparing for Year 9 Annual Review • Are you clear on what you want? • An changes in circumstances since last AR? • Information: e.g. copies of reports, list of attendees, statement on whether your child is disabled (DP(SCR)A) • If your child is a ‘child in need’/looked after child social services should attend. (Consider holding joint review) • Health professionals involved in your child’s care should provide written advice/wherever possible attend • If not happy, contact Head Teacher • Does your child have the necessary support to communicate his/her aspirations and views on what support s/he needs? (Advocacy – SEN draft Code 8.11) Just Equality: Linking Law to Life

  23. Social Care: Overview • Assessment of Need (your child & your needs as carer) • Eligibility Criteria • Provision of Services (accommodation and other) • Direct Payments and Personal Budgets • Charging • Key Legislation: • Chronically Sick & Disabled Persons Act 1970 • Children Act 1989 • NHS & Community Care Act 1990/ Care Act 2014 • Transition arrangements • Care Act 2014 (sections 58-66 for young person & their carer) • S17 Children Act 1989 services – continued provision if EHC plan Just Equality: Linking Law to Life

  24. Social Care: “Child in Need” • Unlikely to achieve or maintain, or have opportunity of maintaining, a reasonable standard of health or development, without the provision of services; or • their health or development is likely to be significantly impaired/further impaired, without the provision of services; or • is disabled. Just Equality: Linking Law to Life

  25. Social Care: Disabled child • is ‘blind, deaf or dumb or suffers from mental disorder of any kind or is substantially and permanently handicapped by illness, injury or congenital deformity or such other disability that may be prescribed’ and • Development means physical, intellectual, emotional, social or behavioural development • Health means physical or mental health • (Section 17(10) Children Act 1989). Just Equality: Linking Law to Life

  26. Provision for disabled children • Every local authority shall provide services designed (a) to minimise the effect on disabled children within their area of their disabilities; (b)  to give such children the opportunity to lead lives which are as normal as possible; and (c)  to assist individuals who provide care for such children to continue to do so, or to do so more effectively, by giving them breaks from caring. Just Equality: Linking Law to Life

  27. Short breaks: Provision of accommodation • As part of a range of services under general duty to safeguard and promote the welfare of children in need (Section 17(6) CA 1989) • Provide accommodation ‘for any child within their area (even though a person who has parental responsibility for him is able to provide him with accommodation) if LA considers that to do so would safeguard or promote the child’s welfare’ (Section 20(4) CA 1989 Act) Just Equality: Linking Law to Life

  28. Assessment process: 3 phases • Gathering relevant information (to include talking to you, your child & other key persons in your child’s life); • Considering the information gathered in phase 1 and deciding which of your child’s/ family’s needs are so significant that they require provision of additional social care • Ensuring that this support is in place – either in detailed care plan or by direct payments Just Equality: Linking Law to Life

  29. Eligibility Criteria • Criteria used by children’s services and local social services authorities to assess level of person’s needs and determine whether s/he qualifies for a service. • Largely concerned with the seriousness of the consequences if support is not provided. • Children: no guidance - to what extent would not responding to the identified need cause harm to your child or your family? Check Local Offer • Adult: Critical, Substantial, Moderate, Low (Note under Care Act 2014 regulations to set out minimum level of needs which local authorities must meet)

  30. Assessment of Carer’s Needs • Assessment of disabled child under CA 1989 should always take into account needs of parents and other family members • Carers right to an assessment – Carers (Recognition & Services Act) 1985 • Take into account whether carer works or wishes to work and whether s/he has undertaken, or wishes to undertake training or regular leisure activities – Carers (Equal Opportunities) Act 2004 • Duty to carry out assessment of needs of “parent carer” (s97 C&FAct 2014 (not yet in force) (provide/ intend to provide care for a disabled child for whom has parental responsibility + s17 services)

  31. Carers’ Assessments • “Adults with parental responsibilities for disabled children have a right to a separate carer’s assessment under the Carers (Recognition and Services) Act 1995 and the Carers and Disabled Children Act 2000. The results of this assessment should be taken into account when deciding what services, if any, will be provided under the Children Act 1989.” • Working Together to Safeguard Children, March 2013 Just Equality: Linking Law to Life

  32. Assessment of needs: Adults • Section 47 NHS & Community Care Act 1990 • Care Act 2014 (implementation April 2015) • Duty to assess where appears may have care & support needs • For, e.g. accommodation in a care home or in premises of some other type; care and support at home or in the community; counselling and other types of social work; goods and facilities; information, advice and advocacy. • Consider impact of needs on wellbeing, outcomes the adult wishes to achieve & how care & support achieve this • Carers under the Care Act 2014: are you providing /intend to provide for your adult child? • Involved in your adult child’s assessment • LA must assess your needs if appears that you may have needs, for support Just Equality: Linking Law to Life

  33. Direct Payments & Personal Budgets • Direct payments P are cash payment in lieu of services (so that person can purchase the services themselves) • Paid to parents up until child reaches 18 • Young people can receive direct payments from 16 (provided has the mental capacity to agreed to this) • Where lack capacity - direct payments can be paid to a “suitable person” e.g family member • Personal budgets – allocation of funds to person • Direct cash payment (eg direct payments) • An account managed by the LA in line with person’s wishes • An account placed with a 3rd party and managed by the individual/carers/others • A mixture of the above • Both included in CFA 2014 & Care Act 2014

  34. Social Care: Reviewing the Transition Process • Do you have any concerns about your child’s health/social care/needs? If so, request an assessment • Do you have any concerns about the suitability of your home for your child? If so, seek an assessment from social services. • If your child is receiving support from social services, is the care plan being regularly reviewed, are there any changes in your child’s circumstances that need to be taken into account? • Care Act 2014: Adult care transition assessment where YP likely to have care/support needs >18 and significant benefit to YP/their carer in doing so (guidance to be published) Just Equality: Linking Law to Life

  35. Social Care: Looked After Children • Looked after child: in LA care by reason of a care order or is being provided with accommodation under section 20 of the 1989 Act for for 24 hours or more at a time. (This will cover young people placed in residential care accommodation, whether as part of social services’ short-term breaks services, or on a longer-term basis.) • Duties to care leavers: aged 16 and 17, looked after for at least 13 weeks after they reached the age of 14 (continuous or made up of separate episodes of care): • Assessment of needs • Pathway plan (generally up to 21) • Personal adviser • Short-term breaks – limited duties Just Equality: Linking Law to Life

  36. Looked After Children: Reviewing the Transition Process (Years 11 and 12) • Has a needs assessment been carried out within 3 months of your child becoming 16? • If so has a Pathway Plan been prepared on the basis of that needs assessment? (A Pathway Plan should be prepared as soon as possible after the needs assessment is carried out.) In Year 12 - has the Pathway Plan been regularly reviewed and updated? • Has a Personal Adviser been appointed? (This should happen when your child is 16.) • Has a referral been made to adult social care for an assessment of your child’s needs to be carried out (a ‘community care assessment’)? (This should happen before your child is 18.) Just Equality: Linking Law to Life

  37. Health • Registering with a GP • Health Action Plans (YP with leaning disabilities) • CAMHS to adult mental health services a priority (see Mental Health Action Plan, Closing the Gap is there a service specification?) Plan 6 months in advance • Young people with complex needs/ palliative care • Young people and NHS Continuing care • C&FA 2014: EHC Plans; SEN draft Code: • Health services develop transition plan; YP know who leading on this and how to contact that person • YP with EHC plan, LA and health must co-operate, CCGs & LAs must jointly commission services to help outcomes in EHC plan Just Equality: Linking Law to Life

  38. ‘NHS continuing healthcare’ for 18+ • Ongoing care arranged & funded solely by NHS where the individual has been found to have a ‘primary health need’’. (For adults with severe & complex health needs) • No legal definition, ‘in simple terms an individual has a primary health need if, having taken account of all their needs..., it can be said that the main aspects or majority part of the care they require is focused on addressing and/or preventing health needs. • If primary health need, person is eligible for NHS continuing healthcare, the NHS is responsible for providing all of that individual’s assessed health and social care needs – including accommodation, if that is part of the overall need. Just Equality: Linking Law to Life

  39. Continuing Care: Transition Process • Identify at 14 • Refer at 16 • Decide on eligibility at 17 • Ensure agreement on out of area placements at an early stage • Guidance: National Framework for NHS Continuing Healthcare and NHS-funded Nursing Care November 2012 (Revised) www.gov.uk/government/publications/national-framework-for-nhs-continuing-healthcare-and-nhs-funded-nursing-care Just Equality: Linking Law to Life

  40. Role of Clinical Commissioning Groups • Ensure their involvement in the strategic development and oversight of local transition planning processes • Ensure that adult NHS continuing healthcare is appropriately represented at all transition planning meetings to do with individual young people whose needs suggest that there may be potential eligibility. • (With LAs) should have systems in place to ensure that appropriate referrals are made whenever either organisation is supporting a young person who, on reaching adulthood, may have a need for services from the other agency. Just Equality: Linking Law to Life

  41. If Young Person found ineligible • “If a young person who receives children’s continuing care has been determined by the relevant CCG not to be eligible for a package of adult NHS continuing healthcare in respect of when they reach the age of 18, they should be advised of their non-eligibility and of their right to request an independent review, on the same basis as NHS continuing healthcare eligibility decisions regarding adults. The CCG should continue to participate in the transition process, in order to ensure an appropriate transfer of responsibilities, including consideration of whether they should be commissioning, funding or providing services towards a joint package of care.” Just Equality: Linking Law to Life

  42. Continuity of service provision • “A key aim is to ensure that a consistent package of support is provided during the years before and after the transition to adulthood. The nature of the package may change because the young person’s needs or circumstances change. However, it should not change simply because of the move from children’s to adult services or because of a change in the organisation with commissioning or funding responsibilities. Where change is necessary, it should be carried out in a planned manner, in full consultation with the young person. No services or funding should be unilaterally withdrawn unless a full joint health and social care assessment has been carried out and alternative funding arrangements have been put in place.” Just Equality: Linking Law to Life

  43. Health: Starting the Transition Process (Year 9) • Have you been given information about transition? • What other information would you like? • Has a health professional been appointed to work with your child been in preparing & coordinating health plan? • Has a transition worker been appointed? • SSEN: who is attending the Y 9 AR on behalf of health? • If your child has continuing health care and/or palliative care needs: Has your child has been identified as likely to need continuing health care / palliative care as an adult? Just Equality: Linking Law to Life

  44. Health complex/continuing care needs: Review of Transition Process (Yr 11 & 12) • Has a health plan for your child been developed jointly with you and your child? If so is this being regularly reviewed? Are you and your child in regular contact with the health professional appointed to coordinate his/her health plan? • Does the plan reflect what you and your child want? • Has a transition key worker been appointed? • If your child has continuing and/or palliative care needs: has a referral been made to the relevant adult health services? • SSEN: who is attending the Year 11/12 Annual Review on behalf of health? • (Mental health: move to AMHS?) Just Equality: Linking Law to Life

  45. Useful Information • Children and Families Act 2014 – implementation • See Independent Parental Special Education Advice (IPSEA) http://www.ipsea.org.uk • Council for Disabled Children: http://www.councilfordisabledchildren.org.uk • Contact a Family: http://www.cafamily.org.uk • Draft SEN Code: www.gov.uk/government/consultations/revision-of-the-send-code-of-practice-0-to-25-years • PfA (Preparing for Adulthood) Factsheet: The Links Between the Children and Families Act 2014 and the Care Act (April 2014) • www.preparingforadulthood.org.uk/resources/pfa-resources/factsheet-the-children-and-families-act-and-the-care-act • Range of guidance available from Cerebra: http://www.cerebra.org.uk/English/getinformation/guides%20for%20parents/Pages/default.aspx Just Equality: Linking Law to Life

  46. Direct Payments & Personal Budgets: Further Information • Direct payments guidance & information: • http://webarchive.nationalarchives.gov.uk/20130107105354/http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_121131.pdf • http://www.cafamily.org.uk/know-your-rights/disabled-childrens-services/direct-payments/ • Personal budgets - information: • Mind: http://www.mind.org.uk/mental_health_a-z/8003_personal_budgets_for_social_care • Community care: http://www.communitycare.co.uk/2007/01/05/direct-payments-personal-budgets-and-individual-budgets/#.U2yVl_ldWHA • Different views on implementation of personal budgets: http://www.guardian.co.uk/society/2013/feb/12/are-social-care-personal-budgets-working • http://www.theguardian.com/public-leaders-network/2014/feb/26/social-care-failures-personal-budgets Just Equality: Linking Law to Life

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