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Frequently asked questions and answers for parents & carers

Making the transition from childhood to adulthood is an exciting but potentially difficult process for any young person and will take a number of years. For young people with additional needs, this transition can be even more challenging and take a fair amount of preparation and planning.

It's important as a parent or carer of a young person with additional needs to know what sort of support is available at each stage in their transition, whether your young person receives health and/or social care services or not. It is equally important to know what you can be doing to help your young person to make a successful transition into adulthood.

We've produced a summary guide to the various Education, Health, Social Care and Informal Social, Learning and Leisure Opportunities available to 16-25 year olds in Suffolk, with a special focus on how you access each service and what's needed to be eligible, where applicable. It includes contact numbers and web links for each service.

Below are some frequently asked questions of parents and carers of young people with additional needs that should help you to navigate these transitional years.

FAQs about Education

1. "We can't see evidence of Person-Centred Reviews coming to schools."

We know that person-centred practices aren't yet being used consistently across all schools and we're working to address this.

However, many schools and other education settings have begun to introduce person-centred practices into reviews that they do for young people with additional needs.

The SEND Reforms, as set out in the Children and Families Act 2014, clearly state that young people's views should be at the heart of any decisions made about them, so all professionals will have to adopt person-centred practices when working with young people.

Additionally, our Raising the Bar programme is working with schools to improve their awareness. Training around this way of working may be arranged through the Educational Psychology Service, part of Schools' Choice. This should ensure that all gaps are filled and that person-centred practices are being used across the board.

If you feel that your child's school is not engaging with person-centred planning, you should first speak to the school about this to see if the problem can be resolved. If the problem can't be resolved by speaking to the school, you can contact the Special Educational Needs and Disabilities Information Advice and Support Service (SENDIASS), which can provide information, advice and support around these educational issues. Their helpline: 01473 265210. Email: sendiass@suffolk.gov.uk.

2. What can parents do if schools aren't participating in transition planning?

Sometimes the use of the term ‘transition planning’ may be confusing to parents, as it covers lots of different types of transition. All schools will have a plan for the transition from primary to secondary schools. Most schools will also have additional support plans for vulnerable pupils. This will involve the Special Educational Needs Co-ordinator (SENCo) but transition is a whole school responsibility and is ultimately the responsibility of the Headteacher. Other transitions within school and across Key Stages may again involve the SENCo, but is more usually part of the class teacher’s role or head of year role. Other transition plans, particularly for pupils with Statements of Special Educational Needs (SEN)/Education, Health and Care Plans (EHC Plans) will support transition through the annual review process.

If you believe that your child's school is not participating in transition planning, you should initially speak to that school’s SENCo, as it's their duty to support young people that have a Special Educational Need.

If the problem can't be resolved by speaking directly to the school, you can contact SENDIASS which can provide information, advice and support around these educational issues. Helpline: 01473 265210, Email: sendiass@suffolk.gov.uk.

3. Some schools aren't listening to the views of parents and become defensive. Can the Local Authority be involved in discussions with school?

Schools and educational settings have a duty to take a lead on providing support for young people who have a special educational need. The Local Authority is not generally in a position to become involved in disagreements between parents/carers and schools.

If you believe that there is a problem relating to support from school or college, firstly you should talk to the professional involved in this aspect to see if the problem can be resolved. If this communication does not seem to be working, SENDIASS can provide information, advice and support around these issues. Helpline: 01473 265210 Email: sendiass@suffolk.gov.uk.

4. Whose responsibility is it to undertake Transition to Adulthood planning? School or Social Care?

If a young person has a Statement of SEN or an EHC Plan, the school has a legal responsibility to undertake Transition to Adulthood planning in that young person’s Year 9 Annual Review. Although it is the school’s responsibility to initiate this, there may be a number of professionals from relevant teams/organisations present at the meeting to help the young person plan for their future. This may include professionals from social care, youth support, NHS and other support services.

As a parent or carer, you can help your child to prepare for this meeting by thinking about what aspirations they might have for adult life and also the help or support they might need to achieve these aspirations. You can also prepare for this meeting by having a look at Suffolk’s Local Offer which could give you some ideas about the support that is available.

5. Some schools have a lack of expertise around SEND, Attention Deficit Hyperactivity Disorder (ADHD) and Autism Spectrum Disorder (ASD). Who is supporting schools in this and how can they be influenced to send their SENCos to regular training?

Within the new Code of Practice, it's the responsibility of all teachers to meet the needs of all children and young people within the classroom, as far as possible. Each school will have a SENCo in place whose job it is to support and advise teachers on how to meet the needs of all children and young people who need additional support. Further support beyond this is co-ordinated by the SENCo, working in collaboration with parents. The Raising the Bar programme works with schools alongside Specialist Learning Support Advisors and Educational Psychologists to improve knowledge around these issues. Schools may request additional training for all staff from these services.

It's also important that parents share information about their child’s needs with the school, so that all teachers are as informed fully about his or her needs.

In each school, the Headteacher and Chair of Governors are responsible for making sure that all their staff are up-to-date with relevant training and so this matter would need to be taken up with the school themselves, through the normal complaints procedures as outlined by the school, and available on their website.

If you believe that a SENCo doesn’t have the necessary skills to support your child/young person, you should speak to school management as outlined above, to see what can be done to improve their skills and knowledge.

If this is still proving a problem, parents and young people can contact SENDIASS to access advice and support. Helpline: 01473 265210, Email: sendiass@suffolk.gov.uk.

6. What support is available for children/young people that are out of school through choice or exclusions?

SENDIASS can inform parents and young people about the Local Authority’s statutory responsibility around the provision of education for these young people and the support that can be provided. Helpline: 01473 265210 Email: sendiass@suffolk.gov.uk.

7. "Some parents are worried that the SEND Reforms won’t be in place in time to benefit their children and this period of change could even have a negative impact."

We recognise there’s a risk of disruption in migrating to a new system, and it would be helpful to keep lines of communication open about the impact. We’re creating some additional resources to target young people in a transition phase (primary to secondary or 14+) as they move systems.

The ethos behind the SEND Reforms, is for children and young people with SEND to receive support that is more joined up, person-centred and with a focus on best possible outcomes. Therefore, although there will be a transitional period between the old and new systems, the SEND Reforms will create positive changes to care and support services.

FAQs about Support

1. What is available for young people without a Statement of SEN/Learning Difficulty Assessment (LDA) or EHCP?

If young people in education do not meet the eligibility criteria for an EHC Plan but still have a Special Educational Need, their needs will be met through SEN Support, where the SENCo will work with parents to assess, plan and work to meet the needs of the child or young person within a cycle of Assess, Plan, Do, Review.

SEN Support, which replaces the old categories of School Action and School Action Plus, is put in place for young people who have additional educational needs, identified by their teacher as being additional to and different from the needs of the majority of pupils in their school. These needs may be met through additional support within school and by accessing services available through the Local Authority's Local Offer.

EHC Plans shouldn't be viewed as the only ‘gateway’ to all of the services that will help your child/young person. If a child or young person doesn't meet the eligibility criteria for an EHC Plan it is because their needs can be met by the support that's already around them, through the Local Offer. Additionally, if a child or young person doesn't have an educational need but needs support for health or care issues, these needs will continue to be met from within those services.

2. What is available for young people who don't meet Adult and Community Services (ACS) eligibility?

Adult and Community Services have a three-level approach to providing support for adults with care and support needs.

  • 1) Help to help yourself: 'universal' services available to everybody to help them integrate in their communities, meet their needs and prevent the need to access ongoing social care.
  • 2) Help when you need it - immediate short-term help: more targeted support for those that will need some more specialist help. This support is time-limited and focuses on the customer maximising (or regaining) their independence and wellbeing.
  • 3) Ongoing support for those who need it: for those who will need ongoing care and support that focuses on re-ablement and independence rather than creating dependency.

Level 3 is only available to adults that will meet the national eligibility criteria (under the Care Act) but level 1 is available to everybody.

Information about Suffolk’s 'universal' level 1 offer can be found on Suffolk Infolink.

Suffolk County Council's Local Offer (the website you are now reading) includes support available for young people 0-25 with SEND. The Local Offer holds information about community and support services expected to be available across education, health and social care, all in one place. These are services and activities for children and young people in the area who have SEN or are disabled, including those who don't have an EHCP, Statement of SEN or an LDA.

3. How can parents of a child or young person with additional needs access advocacy to help them have their voices heard? How can children and young people access advocacy to help them have their voices heard?

For parents of children and young people with additional needs, advocacy is available to those that will experience difficulty in voicing their wishes and feelings for their children/young people, families and themselves. Advocacy for over 18 year olds is provided by Total Voice Suffolk. To find out more about this service, please contact their helpline on 01473 857631, or email tvspartnership@voiceability.org.

Total Voice Suffolk also provides advocacy for those children and young people (in year 9 up) who are involved in transition assessments. This support may be suggested by the social worker or practitioner involved in the assessment, or you can request it from them.

It’s really important that a young person’s wishes and feelings are being taken into account on every step of the way in their transition to adulthood. Advocacy supports people who either have substantial difficulty in being involved in these processes or difficulty in being fully involved, and where there is no-one else available to act in their best interest.

Advocacy for other under-18 year olds can be requested through Activities Unlimited. Call 01473 260026 to find out more.

4. What criteria need to be met before SENDIASS become involved?

SENDIASS will provide information, support, advice and guidance for parents and young people who are experiencing an issue in an educational setting. There is no criteria as such that parents and young people need to meet to access support from SENDIASS. However, the level of support offered will be proportionate to the issue that needs to be addressed. For those families/young people working through the Education, Health and Care Needs Assessment process, SENDIASS can make a referral for independent support if needed.

5. What can be done for young adults that left school several years ago and did not receive adequate transition planning resulting in ongoing lack of support and direction?

For adults that have already gone through the process of transition to adulthood, it is still possible to request an adult care and support assessment which will identify the care and support needs of that adult, and whether they would be eligible for help from adult social services. If you would like to request an assessment, you will need to contact Customer First. Find out more about contacting Customer First.

Support outside of social services is still available for adults in the community and should always be looked into prior to accessing social services. If the adult is 25 or under, they can access the Local Offer. If the adult is over 25 they should use Suffolk Infolink to find out what is available in their local community.

6. Does the Activities Unlimited budget run out on a young person’s 18th birthday?

Children’s Services funding for young people to access Activities Unlimited services does stop at age 18. However, after the age of 18, young adults may still get access to funding for short breaks through Adult Services.

To get this funding you need to meet the national Care Act adult eligibility criteria. To get an assessment for this you can either:

  • refer yourself/your young person via Customer First
  • or, Children’s Services may instigate this process on you.

Under the Children’s legislation, Suffolk County Council has a role in identifying young people that they think will meet adult services’ eligibility criteria. The Disabled Children’s Social Work Team works with social care staff in Activities Unlimited and colleagues elsewhere. The staff identify young people that they believe in their experience are likely to meet adult services’ eligibility criteria, and offer a transition assessment under the Care Act criteria.

Activities Unlimited can also be self-funded up to the age of 25 for young people with additional needs.

FAQs about Healthcare & NHS

1. Do Health services have capacity to deliver Occupational Therapy? If so, how can parents access this?

Occupational Therapy is available via referral through GP or SENCo at school. Information about the service is available on the Local Offer.

The primary role of Paediatric Occupational Therapy is to enable children and young people with functional disability to participate in every day activities. The service provides assessment and treatment for children and young people 0 to 19 years with specific difficulties that are affecting their ability to access education and the environment. This is achieved by developing interventions that enhance their ability to participate or by modifying the environment through the use of specialist equipment, and this is done in partnership with parents and staff within the child’s educational setting. The service is provided by a specialist team of qualified occupational therapists, therapy technicians and assistants, as well as administrators.

There are also Social Care Occupational Therapy services which have different referral criteria, and tend to focus on home adaptations etc.

2. If a child's educational needs are minimal in proportion to their health needs but fluctuate, how can an EHC Plan be kept open?

According to the legislation, if a child or young person doesn’t have a significant educational need(s) then the EHC Plan will cease to be maintained. However if the child or young person still has identified health needs these will still be met in the same way as they are currently. Health care isn't dependent on the EHC Plan – the plan just clarifies what the health needs are of children who require an EHC Plan, so these can be integrated into their educational provision.

An EHC Plan shouldn’t be viewed as a 'gateway' for all of the support and help that your child/young person might need. If their educational need doesn't meet the criteria for an EHC Plan, the school will still put in place the relevant support needed. Additionally, if you feel that your child/young person needs some social support, there are many options available outside of social care which can be found through Suffolk’s Local Offer which can also increase integration into the local community.

3. What are the Clinical Commissioning Groups' involvement in the overview of all health services and funding?

There are 3 CCGs that cover community health services across Suffolk and should have a good overview of all of these services and the funding attached to each.

The table below shows the different community healthcare services for adults and children broken down into each CCG area with the company that is providing each contract:

CCG Adult Health Children's Health
Ipswich & East Suffolk CCG Suffolk Community Healthcare Suffolk Community Healthcare
West Suffolk CCG Suffolk Community Healthcare Suffolk Community Healthcare
Great Yarmouth & Waveney CCG East Coast Community Healthcare East Coast Community Healthcare

4. Health Transition Plans are working better in special schools but there are gaps in mainstream education.

This has been a challenge to implement, as we do not have defined ‘health teams’ working in mainstream schools and it is therefore more difficult to co-ordinate. However we will be looking at this in the future to try and put something in place.

5. Is health included in Annual Transition Reviews?

Yes, NHS representatives are invited when they are already involved with a child. It is not always possible for staff to attend, but they do generally aim to provide up to date information for the Annual Review when appropriate, and when they have been made aware of the meeting and given sufficient notice to do so. Parents can be proactive in inviting specific professionals, or asking for update reports if our services are actively involved.

6. Some GPs have a lack of knowledge around Daily (Disability) Living Assessments. Who can parents go to?

‘Daily Living’ is one component of the new Personal Independence Payment which is replacing Disability Living Allowance. A person’s entitlement to a Personal Independence Payment is calculated through a ‘daily living’ and ‘mobility’ assessment carried out by an Atos assessor. Supporting evidence can also be gained from NHS/health professionals. If you believe that your GP has a lack of knowledge in this area, you can seek advice from other NHS professionals involved (e.g. Health Visitor or school nurse, Social Worker, therapist). Alternatively, ask your GP to find out, because they should be aware of changes.

For more information about disability benefits, please follow this link to government information: https://www.gov.uk/financial-help-disabled

7. Parents have to co-ordinate NHS/health appointments, reports and surgery impact. Who should be doing this?

At the moment, health professionals don't have the capacity to provide 'keyworker' roles specifically to support this process. In general parents would be expected to do this, but we realise this can be a challenge.

Other FAQs

1. Why is transition planning starting at Year 9 and not earlier?

When considering ‘transition planning’ as the preparation for young people moving into adulthood, we agree that this should be started as early as possible. Schools will address this through the curriculum, with careers advice being introduced from Year 8. It's often hard for a young person to think about what they may want to achieve from their adulthood when they're in their early teens, however, early planning is the key to success and so parents/carers should talk with their children to start thinking about this. Suffolk County Council’s website for young people, The Source, is a good place to start looking for information, advice and guidance for all aspects of a young person’s life.

Under the Care Act, families and young people can request a 'transition assessment', if they feel there will be care and support needs on reaching age 18. This transition assessment will be carried out by a trained practitioner and take into account the young person's wishes and aspirations as well as potential care and support needs. If those needs are likely to be eligible for adult care, we will work with your young person to create a fully person-centred plan for their transitional years, and keep this under review.

If your child currently has a social worker or family support worker they may suggest a transition assessment, you can request a transition assessment yourself through them, or contact Customer First directly to ask for a transition assessment.

Transition’ can can also mean the move from primary to secondary education, which is as important as the transition from childhood to adulthood. In this earlier transition in a child’s life, it is the individual schools’ responsibility to ensure that the movement between primary and secondary school is smooth. If there are specific needs around the child’s transition to secondary school, these should be addressed in their final review in their primary school, which should be attended by a representative from the new secondary school. Representatives from both primary and secondary schools will hold meetings to talk about students moving to the secondary school that might need extra support and information about these students will be shared.

Additionally, many schools will offer the opportunity for the student, and their parents, to visit their new school at least once before making the move to help them feel more comfortable about their new school. Where parents have significant concerns about the move to Secondary school, it is a good idea to discuss this with the SENCo at either primary or secondary school so that a more personalised support plan can be put in place. As previously stated, if a parent/carer feels that this process is not working well, they should contact SENDIASS for advice and information.

2. How are young people being assessed for independent living?

District and Borough Councils have an overall responsibility for housing issues. However, they work together with Suffolk County Council to identify housing availability and those young people in transition.

Accommodation Review Teams attend transition tracking meetings where all young people with additional needs and known to the Local Authority in that local area are discussed and information shared. In these meetings, anybody that is approaching the age when they would like to move into supported living will be flagged up by these teams. If professionals are confident that the young person's needs will meet eligibility for Adult Social Care support, their name will be put onto the Housing Need Database which is a planning tool for finding appropriate housing. This shouldn't be looked at as a waiting list. Additionally, a care and support needs assessment (most likely as part of a transition assessment) will be carried out by Adult Social Services to find out what level of support is needed for that young person to move into supported living.

Even if a young person will not be receiving funding support from Adult Social Services, from the age of 16 they can still register their name and their need for housing with their local District or Borough Council. This can be done through Gateway to Homechoice, or in Forest Heath or St Edmundsbury district, through Home-Link.

3. "There is no one person with overall responsibility for implementing Annual Transition Review actions. There needs to be more clarity in accountability."

Young people receiving EHC Plans will be allocated a key worker from the Special Needs Officer team who will be drafting and issuing the EHC Plan. They are likely to be the first point of contact when families and young people are concerned about provision, however we will redirect social care questions to the appropriate team and similarly with health/NHS queries.

We see the benefit and importance of having one individual that can drive actions. However, it's still the responsibility of the different services involved in a child or young person’s support to carry on providing that support and undertaking any new actions. The ethos of the SEND Reforms, as set out in the Children and Families Act 2014, is about integration of education, health and care services and therefore these services have an obligation to work together to achieve the best possible outcome for children and young people.

4. How will Health and social care work together with education in practical terms?

The SEND Reforms state that Local Authorities and Health bodies must have arrangements in place to plan and commission education, health and social care services jointly for children and young people with SEN or disabilities.

With new EHC Plans, all of the services that are delivering support to a young person are required to make a contribution to the annual review of this plan by delivering a report on the progress of the young person. This does not necessarily mean that professionals from each service will attend Annual Reviews.

5. There is a lack of provision for people with Autism Spectrum Disorder (ASD) around assistance with socialising and participating in activities. These young people are different from every other disability and need specialist support. What can be done?

In the educational setting this need can be addressed by the County Inclusive Resource (CIR) up to year 11. CIR can be accessed by mainstream schools to support the inclusion of pupils on their roll with a diagnosis of ASD.

The CIR staff will go into schools and work alongside school staff with the pupil, modelling strategies and giving advice. Enhancing the inclusion of pupils with ASD is approached as a partnership between school and the CIR. To find out how you can access support from the County Inclusive Resource, speak to your school’s SENCo. Many schools will offer supported social opportunities, such as clubs and activities. More information will be found on the school’s SEN Information Report.

Outside of education, there are networks of support across Suffolk for children, young people and adults with ASD ranging from clubs and groups to one-to-one support. To find out what is available in your local community, visit Suffolk's Local Offer.
To find services that specifically support people with ASD, type the word ‘Autism’ into the search bar.

Additionally there is information available online to help support these issues. One good place for information is the National Autistic Society. Please follow this linkhttp://www.autism.org.uk/about/communication/communicating.aspx

6. What exactly is meant by the ‘Local Offer’?

It literally means 'what is on offer locally'. The Local Offer covers support available to all children and young people with SEN or disabilities from universal services such as schools and GPs, targeted services for children and young people with SEN or disabilities who require additional short-term support over and above that routinely provided as part of universal services, and specialist services for children and young people with SEN or disabilities who require specialized, longer term support.

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