"Failure to plan is planning to fail"

This page is designed to be specifically for young people leaving Meldreth School or considering entering Orchard Manor Transition Service. It will only cover the basic information as to the processes that enable the provision of services for a young person with high/complex needs when they reach adulthood.

There are many excellent guides and information that show how to navigate the transition from children's services to adult services. You can also read our glossary of terms on transition.

What follows is a basic transition path. However, if this hasn’t happened for your young person they can step onto the pathway at any point.

Transition review > transition plan > assessment of needs > locate appropriate services > funding agreed = my goal, a good service, well-met needs

At every Annual Educational Review of the Special Education Needs Statement, discuss what you envisage happening for your child when they are an adult – tell your home area, your local funding authority so they can start planning what funds they need to make sure will be available in the future.

Step 1: transition review

The Local Education Authority (LEA) should arrange this transition review, but your home area should also be fully involved in review meetings and plans. If your child is ‘looked after', then plans for leaving care should run in parallel to the school transition planning.

Step 2: transition plan

A Transitions Plan is drawn up at this first educational review after the child’s 14th birthday. The Local Education Authority and Connexions are jointly responsible for ensuring delivery of the ‘Transitions Plan’. Children’s Social Care Workers involved with the young person can also be involved so that any parallel assessment can be made. If the young person has health needs, the health team should be involved and planning too.

As the young person will need social care in their adult life, a referral can be made to the Transitions Team, if one exists, in your home area, initially to inform the team that they will need to work with the young person in the future.

The views of young people and their parents are central to this process. A person-centred plan should also be created, showing the views of the child. Maybe they will be able to make actual choices that will be included in the plan. Maybe it will include their informed views or the plan will include an interpretation of their actions as to what we know they like and don’t like for example.

As a result of this transition review meeting in Year 9, actions should be agreed between the young person, if possible, their family, the school and other relevant agencies. On the basis of this, the head teacher has responsibility for drawing up a plan that clearly defines who is responsible for what and when actions should be taken. Currently, the Connexions service has a responsibility for overseeing the delivery of this transition plan. This plan must be reviewed and updated each year, in consultation with the disabled young person and their family.

Disabled young people who are looked after by the local authority will have a care plan, (which is known as a pathway plan when they reach age 16 and are entitled to leaving care services as well). ‘Looked after’ is the term used when a young person is receiving any form of respite away from home or living full-time in school). This plan must be based on a thorough assessment of their needs and set out the full range of support services that will be required if they are to achieve their goals and aspirations into adulthood. This plan must also include a health assessment and plan.

Step 3: assessment of needs

Around the child's 17th birthday, the Transition Social Worker should collate all the planning information. An Adult Team Worker may become involved as the adult team will become financially responsible for the young person from the age of 18 or 19 if they are not fully health-funded. If there isn’t a transition team in your local area then a children’s social worker will carry out the assessment and planning.

A young person should have an assessment of their needs already so at this point it may only need to be updated from the original children’s social care assessment. The Social Care Assessment’s Care Plan, always at the back of the assessment, must be updated. The Care Plan is the legal document completed by the local authority that details how the assessed needs will be met by specified services. This final phase of the assessment process requires the authority to specify what services the individual is entitled to receive, their frequency and so on. It is not the same as the support/care plan that shows how services physically deliver the support.

If you are a carer providing substantial support then you are entitled to an assessment of your needs, too.

Step 4: person-centred plan

Whether it is the Children’s Team social worker, transition social worker, adult team’s care manager or Primary Care Trust case manager, someone must be allocated to help your soon-to-be-adult child and you locate the preferred choice of services. Step 4 can run in parallel with step 3 because when the social worker assesses the person’s needs they also need to state how these needs will be met.

At this point you will already have an idea for the future and know a lot through the development of the person-centred plan. You will have found out as much as you can from all the people involved in your young person’s life. Everyone will have envisaged the kind of support your son or daughter requires, not just how the care will be delivered, but how a person is supported to enjoy a good quality of life. You will hopefully have been informed of all the different models available and visited different services. Maybe what you know your son or daughter needs doesn’t fully exist and will have to be created, utilising different services. Maybe you have discovered that you have a lot of knowledge already and have heard about different services through word of mouth. There is nothing stopping you doing your own research and finding out what is out there.

Signing the assessment

Once an assessment has been carried out, don't sign it until you:

• have read it fully
• have questioned anything that has been written that you are unsure of or worried about
• have met with the social worker or care manager to discuss it
• have changed anything that isn't right, or have added extra information where necessary
• are sure that it is clear how much support your young person and your family need and how often
• are sure that it has covered all aspects of life: money, work, training, education, housing, health, social care and leisure – outings and so on.

Funding

It is the legal duty of local authorities to provide services that meet your son or daughter’s eligible needs. There are many statutory duties and regulations that underpin community care law. There are two legal ways to commission/pay for services. The authority can pay for the service or give the person or their agent the cash to do this through a direct payment. But sometimes the authority, the local council, produces its own policies around things like the personalisation agenda or the financial cuts, but these are not underpinned by law. It is the law that states that the local authorities must pay for someone’s eligible needs to be met. Workers may not realise that by following certain local policies they are acting unlawfully. It is hoped that the social worker will advocate for your son or daughter to gain the services they need. This means it is their job to get the right service (this may not always be the service you like – in this case persist with your reasons) funded and for your child as an adult to reach their goal.

The key community care statutes for Meldreth young people are:

• National Assistance Act 1948
• Chronically Sick and Disabled Person’s Act 1970
• Community Care Services and Children
• NHS Community Care Act 1990

Eligibility criteria

There are many disabled children and adults in an area who need help but social services have limited financial resources. Using ‘eligibility criteria’ for deciding who has a ‘need’ for services is a way they can prioritise, to make sure the people most in need get help. Local authorities usually provide services for those who meet their critical or substantial need. For example, a person has critical need under ‘independent living skills’ if they have or would have little or no choice over vital aspects of the immediate environment. Therefore they have a critical need for support if they cannot turn the fire on to heat up the room they are in.

The criteria differ from one authority to another and this means if you move to a different local authority area, you may no longer qualify for the same help. For example, one of the services listed under the Chronically Sick and Disabled Person’s Act is ‘holidays’. This doesn’t mean every disabled person must be given a holiday each time they ask. There will be local eligibility criteria. It might say for instance that holidays will normally only be given if a child has not had a holiday for five years and there is a risk of family breakdown if it’s not given. In this example, if your child had not had a holiday for five years and you could show that your family was under such stress that family breakdown was possible, there would be an obligation to fund the holiday regardless of the local authority’s financial difficulties.

Beware!

It is quite common to hear statements like "Our local authority no longer provides short breaks" or "We only give people personal budgets. The Indicative Amount is the maximum amount of money we say that can be allocated in this local authority." These statements are unlawful and you should have good grounds for a complaint. In fact, the local authority should not put a blanket ban on any service and should always consider the needs of the individual child/young adult and family.

Payment for services

In England, the government has developed Fair Access to Services to allocate services and make sure the most in need people get support. There may be differences in eligibility for social care services between children and adults so you will need to check this with your local authority. When your son or daughter moves into adulthood, you will probably be charged for some services, ask to see your local area's charging policy. (A number of authorities are looking at their charging policy for children’s services as well.)

Financial assessments must be completed to make sure that the charge is reasonable. Social services can make a 'reasonable charge' for services to disabled children and their families too. The following must be provided free:

1.  Advice, guidance and counselling services
2.  Services to families on Income Support or Job Seeker's Allowance or income-related Employment Support Allowance.

When a child reaches 16 years of age, they are assessed in their own right. This means it should be their ability to pay which is taken into account and not yours. (They are eligible to claim unemployment benefits in their own right from this age.)

Health services

Your child becomes an adult for health services at the age of 18. The school doctor can link your young person into the adult health services they will need.

GPs are always the initial point of access to all primary health services. For many disabled young people, contact with their GP is minimal and most contact is with their paediatrician. The change to adult health services often involves multiple specialists rather than one person overseeing their medical needs. Each of these specialist teams and consultants will need time to establish a relationship with the young person and each may require an assessment to be carried out. The GP or school doctor needs to be involved in the transition planning process, as they become the first point of contact for young people on leaving school for any therapies which may have been provided via the school.

If your adult child is fully funded by continuing care through the Primary Care Trust, slightly different legal rules apply. If you are in any doubt that rights are not being upheld, do seek legal advice.

Mental Capacity Act (2005)

If your child is unable to make the big decision where to live when leaving school or home, they are said to lack the capacity for this decision. If someone lacks capacity and are considered to be chronologically an adult, their parents are not responsible for making these decisions.

The Mental Capacity Act (MCA) must be followed. Parents and family members have the right in law to be consulted about the decision. But the ultimate choice is made by the person responsible for carrying out the action. Basically if the action is paying for a care home then the decision is with social care; if it is a medical decision, the choice is with the doctors.

Please remember that this Act is there to ensure that decisions that are made for someone who lacks capacity must be made in the individual’s best interests. Therefore a person who lacks capacity has the right to be protected by the law. It should not be manipulated in order to cut funders' costs or to fit policy, and there is legal recourse to prevent this.

Complaints

All services have a complaints procedure. Don’t forget you can use them to complain.

Further resources on transition

Disabled children’s services in England and Wales is a very helpful booklet about young people’s rights to services.

The Transition Information Network has written the following key resources on transition

Transition: getting it right for young people

This guide brings together all key information for professionals about the transition process. It includes information on statutory duties and offers examples of effective practice to illustrate how services are addressing local need. It contains checklists, which offer information on meeting key obligations and providing minimum quality standards, to support agencies in providing a framework of services to effectively meet the needs of disabled young people in their transition to adulthood. This guide is a starting point to give all services useful information and examples of excellent support for disabled young people and their families. There are no more hard copies available but the guide can be downloaded.

Transition of young people with physical disabilities or chronic illnesses from children's to adult's services.

Bridging the Divide at Transition. What happens for young people with learning difficulties and their families?

What works well in developing and implementing multi-agency coordinated transition services for disabled young people and those with complex health needs and their families. It also assesses the costs of these services.

There is considerable diversity in transition services in England. We chose five services which encompassed different models of working for detailed research. We looked at satisfaction with the service, parents’ and young people’s met and unmet needs and effects on parental stress. The key factors for better outcomes were:

• having a transition worker who supported the young person and parents
• the family having a written transition plan
• the manager of the transition service having strategic level involvement.

The full report and a four-page summary are available to download.

We hope that you have found this information of use, we believe it to be accurate, however it is only intended as a guide. We strongly advise that you do not rely solely on the information contained in this guide and to seek further guidance if you are at all concerned. If you believe the information contained within our guide is out of date or inaccurate in any way please let us know.