MIDDLESBROUGH INFORMATION GUIDE

for parents and carers of children and young people with a disability

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WelcomeBeing a parent is the most rewarding experience, but it can also be tough, especially if your child has a disability. This handbook aims to offer practical advice and positive ways to manage some of the challenges you may encounter. You’ll find information on local services as well as ideas and tips that can be used to tackle specific issues. There is also information on how to get further support.

This handbook has been put together by people who work with children with disabilities in Middlesbrough and by parents of disabled children. We hope you find it useful. If you have any comments about this handbook, please ring Middlesbrough Team for Children with Disabilities 01642 579160.

Throughout this booklet the term ‘parents’ has been used to mean mothers, fathers, carers and other adults with a responsibility for caring for a child.

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Contents

• You are not alone 4

• Getting Information 6

• Getting Out and About 8

• Meeting with other Parents and Carers 10

• Family Life 12

• Health 14

• Tax Credits and Other Financial Help 17

• Disability Living Allowance and Carer’s Allowance 19

• Social Work Support 22

• Education 24

• Safety at home 27

• Short Break Services 29

• Growing up and Transitions 32

• Useful Contact Numbers 34

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You are not alone“I was surprised how much support is out there, it’s just a question of finding out more.”

“I thought it was just me who felt like this. Now I know there are many other families who have the same issues.”

• Additional support services are used by families with children who need more and/or different help than other children of the same age.

• Family, friends and other families with children with disabilities can also provide help and advice.

• There are local networks to help parents with young children to get in touch with each other and meet up. Your General Practitioner (GP) or hospital specialist may be the first person you meet who can refer you on to places where you can get more help.

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All children develop at different speeds so if, for example, your first child was walking by their first birthday, your second child might not do the same and this does not mean they have a disability. However, you may feel that your child is not meeting the key milestones you are expecting them to, such as sitting up, walking or talking.

Parents know their children best, so if you have concerns about your child’s development you need to speak to your GP or Health Visitor. They will be able to put you in touch with people who can support you. Be persistent. If your worries continue, go back to your GP and don’t be put off.

Finding out that your child has a disability can happen in many different ways for families.

Tests during pregnancy might mean that you know before your baby is born that there is a chance that he or she may have a specific condition. Or you might have found out when your child was born, or shortly after birth, that they have a disability or health concern.

For many families it is much later that they notice signs that their child needs help or that a problem is developing.

Many families have never had any contact with someone with a disability and finding out that they have a child with a disability can be a shock. It can seem that overnight your plans for your life and for your family have

changed. Explaining to family and friends can be difficult and life can seem grim.

Talk to your GP and Health Visitor - do not be afraid to ask for help and remember there is support out there and you are not alone. Every child and family is different and will need different types of support. The support you need may also change over time, as what helps in the early days will be different from what you need later on.

There is lots of support and help out there. The Early Help Assessment (EHA) is one way that families may get extra help. It is a process that can help you to work with a professional to think about your child’s needs and how they can be met. Talk to your Health Visitor, School or other professionals you are working with about Early Help. Alternatively you can contact the Early Help Hub on 01642 726004.

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Getting Information“I wish I had known that help was available - no one told me”

• You can learn a lot from other parents

• You can use the Internet or there are leaflets and newsletters

• There are lots of support services available

We know how important it is that parents have the information they need. Parents have told us that in the past, they struggled without help and did not know what they were entitled to and who to ask. This booklet has been put together to try and give some of the information you need.

“Disability Matters” is a good source of helpful information. This is a newsletter, which is produced every two months and has information about local events and services for children with disabilities. It will tell you about free activities and tell you how to make contact with other services. If you would like to receive copies of this free newsletter, please ring 01642 579176 and ask to be put on the mailing list. Or email disabilitymatters@middlesbrough.gov.uk.

There are also information days and family days where services meet with families to talk about the help that families need, and the help that is available. Disability Matters has information about all of this.

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There is a “Text Alert” service which can give you information about parents’ meetings and events for children and young people. Just let us have your mobile telephone number to join this free service. Telephone 01642 579176 and say that you want to join the texting service.

Family Information Service (FIS), MiddlesbroughStronger Families is part of Middlesbrough Council’s Supporting Communities Service and provides early help to children, young people and families. They offer advice and support through the FIS and Family Service Directory. This includes childcare provision and the range of services and activities available in Middlesbrough for children, young people and families.

Local OfferThe Local Offer is an online directory for children and young people with special educational needs or disabilities

(SEND) and their families to find the services they need, as well as a wide range of useful information, advice and guidance. It includes services such as education and training, social care, money and benefits, leisure and activities and lots more.

To access information about Middlesbrough FIS or Local Offer, please go towww.middlesbrough.gov.uk/fsd.

If you do not have access to the Local Offer website, you can contact FIS on 01642 354200. They will help you find the information you need and can also print pages out for you.

If you need information and you do not know who to ask, contact the Children with Disabilities Team on 01642 579176. They will try and help.

Other useful numbers are:Citizens Advice Bureau (Middlesbrough)............................ 0344 499 4110 Middlesbrough Welfare Rights Unit................ ........... 01642 729242

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Getting Out and About“I felt trapped in the house with my child – going out was too difficult.”

“I could not use the bus, but could not afford a taxi.”

• It can be really difficult to get around if you have a child with a disability – it might seem very expensive.

• You might think people will stare at you or that your child will be difficult to control.

• It is really important that you get out and about.

Many families with a new baby or with more than one child can find it hard to get out and about. But it is really important that you can get out to visit shops, to have fun, to go to parks and other places that you and your child would like to go, and to get to the doctors or hospital when you need to.

There is a lot of help around so do not feel trapped.

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Financial helpPlease see the section on Disability Living Allowance (see page 19) - this tells you about money that you can claim to help you to get about. If you have hospital appointments, you should talk to the hospital about getting help with transport costs.

ParkingThe Blue Badge Scheme provides a range of parking for people (including children) who have a disability and their carers. To apply for a badge or for more information, contact Middlesbrough Council’s First Contact Team on 01642 726004.

Changing Places/ToiletsIf you have a RADAR key, you can access any disabled toilet where you see a RADAR lock. Telephone Shopmobility on 01642 254545 for more information.

There are now Changing Places in Middlesbrough Bus Station, James Cook University Hospital, Neptune Leisure Centre, Rainbow Leisure Centre, Myplace, Cumberland Resource Centre, The Orchard Resource Centre, Stewart Park, Middlesbrough Sports Village and The Gateway.

There is a membership scheme for the Changing Place in the Bus Station. You can join by visiting Shopmobility based in the Hill Street Centre and completing an application form (you will need to take two forms of ID with you). You will get a Fob – an electronic key - so you can access the Changing Places Toilet.

Information about Changing Places can be obtained from Shopmobility by ringing 01642 254545 or Middlesbrough Council on 01642 726004.

Some families are not able to take their child with them on some outings. Sometimes they need to be able to take another child somewhere or have time for themselves to go out. Please see the section on Short Breaks for further information about how help can be provided.

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Meeting other Parents and CarersAdvice and support from people who understand

“Not only do we look forward to our outings, it gives me a short break plus the opportunity to be with other parents in the same situation.”

“It helps to hear other people talk about how they have managed – it makes me feel that it is not just me.”

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One of the most important sources of advice and support is other people who have a disabled child. You do not have to feel isolated.

There are local and national support groups run by people who have had similar experiences. There are also national groups that deal with particular types of disability. Many of these groups and organisations were set up by parents and carers. Therefore, you can expect to speak to people who understand what it is like to be the parent or carer of a disabled child.

Contact details for some of these groups can be found at the back of this handbook. “Disability Matters” (see page 6) is a good source of local information. You can also contact the Children with Disabilities Team.

Parents4Change is Middlesbrough’s parent/ carers’ forum which is a group of parents, grandparents and carers of children and young people with disabilities that is developing ways to include families in the process of influencing change in Disability Services in Middlesbrough.

Parents4Change organises free events throughout the year and are open to all parents and carers. They also have meetings and focus groups. Information about these events will be available in Disability Matters and also on the Parents4Change website –

www.parents4change.co.uk

If you can access the internet, Contact a Family has a really good website and can help you get in touch with support groups. To find out more, visit their website www.cafamily.org.uk or ring them on 0808 808 3555.

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Family Life“Our son loves to swim at our local pool and we go along to guide him and have a swim ourselves. It’s great to be together!”

• Some people find that having a child with a disability makes their family stronger - relatives help and there is support and advice available.

• Some people find having a child with a disability puts their family under pressure - there may be financial problems and some relatives may find it hard to accept a disabled child.

• Some families worry about their child so much that they do not put the same boundaries and guidelines in place as they do for their other children.

• Family life can be tiring, even more so when you have a child with a disability. Make time for yourself. Don’t be ashamed to ask for help. Support groups, parent groups and other organisations are out there to help you cope.

All families are different. Some are very big and include grandparents - others may just be a mother and her child.

Families respond to having a child with a disability in many different ways. Talk to people who are helping you, such as your doctor or health visitor, if you think you are in difficulty and need help. Do not struggle on your own.

Sometimes when a family has a child with a disability,

they worry about them so much that they do not put the boundaries in place that they do for other children. Getting good routines in place are as important as they are for any child.

For instance, sleep problems can get worse if they are not sorted out when a child is young. Letting a child sleep with you might seem a good idea when you are worried about them but it will not seem such a good idea when they are 15.

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The same is true with behaviour. Living with difficult behaviour might be possible when your child is young but when they are older, you may find you are in difficulty.

If your child has a learning disability and you are having problems with sleep or behaviour, you can contact the Learning Disability Child & Adolescent Mental Health Service (LD CAMHS) Service on 01642 529720.

Staff and Parents4Change have written a booklet about sleep – telephone 01642 579176 if you would like a copy.

If you are not sure who to ask or how help can be provided, you can always ring the Children with Disabilities team on 01642 579160.

An active family lifeDoing positive activities together is a great way of building bonds within your family and it doesn’t have to be expensive. You could try involving the whole family and it could simply be a trip to your local park or playing games in the garden. You could try to schedule a regular time to do this or just be spontaneous. The aim is to enjoy each other’s company.

It’s also very important that your child has access to a range of leisure activities. They can meet new people, gain skills and confidence and develop new interests. This can affect your child’s behaviour in a really positive way and help them to

be as independent as possible.

It can be difficult to leave your child in someone else’s care and you may feel anxious about it but remember, they’re having fun and have the right people around them who know that their safety is key.

Many leisure opportunities are provided for children and families in

Middlesbrough. Most of these are accessible for most children with disabilities. They include parks, a leisure farm, youth clubs, and swimming and sports facilities. Middlesbrough Cycle track includes a range of special bikes and trikes.

For general information about play and leisure activities visit the Middlesbrough Council Website. For special activities for children with disabilities and their families, please see Disability Matters. Don’t forget that having a child with a disability can be exhausting so make sure you also have some time for yourself.

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Health“My daughter now has the correct healthcare and is really excelling. Day to day activities are easier for her and she seems so much happier.”

• Health is important for your child to make them feel comfortable and enjoy a better quality of life.

• Although life can be hectic, try not to ignore your own health needs.

• If you are worried about possible health problems, contact your GP or Health Visitor.

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Some children with disabilities are strong and healthy – they do not have more health needs than any other child. They need the same care as any other child and, like them, they need regular dental appointments and immunisations.

However, some children do need additional support and there is a good range of services available.

School Nurses and Health Visitors are trained nurses with additional expertise in child health and development who can provide good information and advice. School Nurses and Health Visitors are based in several teams around Middlesbrough and work in partnership with other agencies. Specialist Schools have access to School Nurses. Please contact your child’s school to find out who the School Nurse for the school is. For any question about Health Visitors, contact your GP, school or Health Visiting Team Headquarter on 01287 284016 or 01287 284017.

Always talk to your doctor or Health Visitor if you are worried. If you are still worried talk to them again – writing things down before you go can help.

Your doctor can provide a lot of information and re-assurance. He or she can also refer you to specialist services that can help you. This can seem very confusing, as there are many people who might be able to help your child – always ask if you

do not understand what people do. People or service you might be referred to include:

1. CAMHS (Child & Adolescent Mental Health Service) / LD CAMHS

• Psychiatrist - This is a doctor who has specialist training and works with children who have mental health problems or challenging behaviour – they can provide expert advice.

• Psychologist - This is a person who helps children and families cope with emotional and relationship problems.

• Occupational Therapist (OT) - OT is a person who helps if a child has difficulties in tasks like bathing, toileting, dressing, eating, playing or needs lifting. An OT might provide advice or equipment or suggest ways in which your home might be changed to help. The OT service works across different organisations and you may deal with a different Occupational Therapist depending on the needs of your child.

• Learning Disability Community Nurse - This is a nurse who can help with your child’s behaviour and daily routine.

For further advice or information please contact the South Tees LD CAMHS Team for Children and Adolescents with Learning Disabilities on 01642 529720.

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2. PaediatricianThis is a doctor who has special training and just works with children – he or she can provide expert advice. Your GP may refer you to a paediatrician if they feel this is necessary.

3. Children’s Epilepsy NurseThis is a nurse who provides advice and information to families who have a child with severe and ongoing epilepsy. You can contact the Epilepsy Services on 01642 854487, 01642 822717 or 01642 854489.

4. DietitianThis is a person who provides help with eating and feeding. The Nutrition and Dietetics Service provides specialist advice and support to families and carers. The Dietetic and Nutrition Service for Middlesbrough is based in The James Cook University Hospital and the contact number is 01642 854777.

5. Speech & Language TherapistThis is a person who helps when a child is finding it hard to communicate. The contact number is 01642 516780.

6. PhysiotherapistThis is a person who can help if a child is having difficulties moving or walking. The contact number for Middlesbrough and Redcar and Cleveland Physiotherapy Service is 01642 873901 or 01642 746505.

7. Children’s Continence ServiceThe service provides specialised help for children with bed wetting, day time wetting, constipation and/or soiling. They are also able to provide specialist advice for children who are struggling with toilet training due to disability or additional needs. Referral is from GP, school nurse, health visitor or consultant. All the children who are referred should have received first line help from their school nurse or health visitor. The contact number for the service is 01642 737737.

If you have a concern or suggestion about a Health Service, you can contact PALS - Patient Advice and Liaison Service.

Each Trust has a different PALS Service and the numbers are listed below:South Tees Trust................................................................. 0800 028 2451Tees, Esk and Wear Valley NHS Trust ................................. 0800 052 0219

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Tax Credits & Other Financial HelpUnderstanding the financial help available

“Now I know I can get some extra money to help, I feel a bit of the pressure has been taken off”

• There is money to help families who have a child with a disability.

• Some families never know about this or do not claim it because they think they should be able to manage themselves.

• The money is there to help you - always check what you can claim – do not struggle if you can get extra money.

Having a child with a disability can cause extra expense and can mean that working is more difficult. Support is available so you should think about using it. No one will think that you are “scrounging”, they know that families who have a child with a disability need help.

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There are various benefits that you could receive to help you with the costs of caring for a child with a disability. Some of the examples are:

Council Tax DiscountYou may be entitled to a discount under the Disability Reduction Scheme if your child is substantially and permanently disabled and certain conditions are met within the home. For further information, contact Middlesbrough Council Tax Department on 01642 726005 or visit www.middlesbrough.gov.uk.

Child Tax CreditYou may be eligible to claim Child Tax Credit to help with the cost of looking after them if you are responsible for any child under the age of 16 or under 20 if they are in approved education or training.

Working Tax CreditWorking Tax Credit is based on the hours you work and get paid for, or expect to be paid for, either as an employee or a self-employed person. Unpaid work does not count as work when claiming Tax Credits.

For further information on benefit and tax credit rates, contact Welfare Rights Unit on 01642 729242 or visit www.gov.uk .

Other Financial HelpThe Family FundThis is a charity providing grants and information to ease the stress on

low income families arising from the day-to-today care of a severely disabled child. The Family Fund can provide help with items such as a washing machine, sensory toys, bedding, tablets, furniture, clothing, outdoor play equipment, family breaks and computers. It is very important to see if you can apply to the Family Fund as you can you can ask for help every year. Many families find the Family Fund provide a lot of support – don’t be afraid to ask.

The Davison TrustThe Davison Trust for Children can help children living in Middlesbrough who are sick or who have a disability. The Davison Trust can make small grants of money to help with holidays or days out or sometimes other items. It is very easy to apply to the Davison Trust, you just have to fill in a simple form.

Requests by or on behalf of children up to their 19th birthday are considered by the Trustees who know that relatively small sums of money can make a big difference to children who are disabled or sick. If you would like an application form for the Davison Trust please ring 01642 579160.

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Disability Living Allowance (DLA) and Carer’s Allowance

Disability Living AllowanceDisability Living Allowance (DLA) is a tax-free benefit for children up to the age of 16 who require additional help with personal care or have walking difficulties, not just because of long-term illness but also due to additional needs.

You should consider applying if your child has a long-term illness or additional needs, which affects their everyday activities, even if you do not consider your child to be disabled.

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The DLA FormForms can be downloaded from the government website, www.gov.uk, or telephone the Benefit Enquiry Line on 0345 712 3456. If you have your form and are having difficulty filling it in, please telephone 01642 579176 and ask for help. Someone will contact you to make an appointment to help you. Alternatively you can contact the Middlesbrough Welfare Rights Team on 01642 729242 who can issue forms and also help with the completion of forms.

The following tips may make filling out the Disability Living Allowance forms a bit easier.1. Always keep in mind why you are

filling out the form.2. Enlist the help of an outsider who

knows your child.3. Keep a detailed diary of all the

help you give your child. The diary should include headings relevant to the DLA form.

4. Have a trial run. It will allow you to plan the most appropriate responses.

5. Keep a copy! This will help should you need to appeal or ask for a review. It will also be handy when the benefit award period ends and your claim will be renewed, since you have to fill in a renewal form giving almost the same information all over again.

Key pointsDLA is there to help you meet additional expenses caused by long-term health problems, such as higher heating bills, taxi fares, or additional laundry costs.

A long-term health problem is one that has lasted for at least three months and is expected to last for at least another six. You can prepare an application before the three months is up.

The health problem has to result in your child needing substantially more care or supervision than other children of the same age without the health problem.

If your child is under 16 you can make a claim on their behalf. Once they are 16 or over, they can claim in their own right. Making a claim for DLA can be a long drawn out and emotionally draining process but there is help at hand. Once your child reaches age 16 they will have to apply for Personal Independence Payment.

DLA is non-means tested. This means it is not affected by any money the child or the child’s family might have in the form of income or savings. Your child will not automatically be ‘registered disabled’ if they receive DLA and it will not make it more difficult to get a job when they become an adult.

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There are two parts to DLA:1. Care Component – help with personal care.2. Mobility Component – help when someone has problems getting around (mobility).

The help with personal care component of DLA is available at three rates depending on your extent of need - lower, middle and higher. The mobility component is available at two rates – lower and higher. You can spend DLA on anything you wish. It could be used to help you to go on holiday or put away in a savings account for your child.

The Carer’s AllowanceThe Carer’s Allowance is a taxable benefit paid to carers who look after someone who is disabled. It is a contribution towards the income of carers who are unable to work or study full-time. It is not a wage for caring. To find out how much the Carer’s Allowance is, visit the Directgov website www.direct.gov.uk.

Can I get Carer’s Allowance?You may be able to get Carer’s Allowance if you:• Are aged 16 or over.• Spend at least 35 hours a week

caring for someone who is getting Disability Living Allowance at the middle or highest rate for care.

• Are not in full-time education or studying for 21 hours per week or more.

• Earn no more than the ‘earnings limit’ of £110.00 per week after normal deductions.

• Meet conditions about which country you live in.

For Carer’s Allowance, a ‘week’ is seven days, Sunday to Saturday. So, you can still get Carer’s Allowance even if you provide care only at weekends. If you care at least 35 hours every weekend for a child who is away during the week, you can still get Carer’s Allowance. You may have to pay tax on your Carer’s Allowance. The amount of savings you have does not matter for Carer’s Allowance.

The Carer’s Allowance is paid to only one carer so the carers need to decide who should claim. Carer’s Allowance is paid for caring for only one person. More than one person in the same household can claim Carer’s Allowance but they must be caring for different people. For example, if both parents are caring for two disabled children and both meet the qualifying conditions for Carer’s Allowance, each could claim Carer’s Allowance for caring for one of the disabled children.

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Social Work Support“I was worried about having a social worker – I thought she would take my child away, but she has really helped.”

“Social work has changed a lot. We work more in partnership with families where there are concerns to make sure they get support before things reach a crisis”

• Children are best living with their own families if it is possible and as long as they are safe.

• Social workers try to keep families together and work with families to reduce any risks and help them to continue to care for their children.

• Some people are worried about having a social worker but they can provide a lot of help – some families rely on their social worker.

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There are many ways in which a social worker can help a family who have a child with a disability. These include:• Helping them find the right

support.• Helping in emergencies.• Helping families have a break or

get support in the home when it is needed.

• Helping them discuss difficulties with education and health.

• Helping them plan for the future.• Helping families stay together

when there are problems.

Some families are frightened of having a social worker and refuse this support. This means they miss out on support that can help.

Families who have a child with a disability can ask for an assessment by a social worker to see what help can be provided. They can change their minds and say they do not want the support or do not want to continue to have a social worker.

However, children with disabilities are very vulnerable and we know that they are more likely to be abused than other children. Social workers act in the interests of children and try to keep children safe.

When harm happens to children or young people, families also need support. Social Workers and other professionals get involved when parents may be unable to protect their

child from harm and need some help.

In some cases, the Police Vulnerability Unit will investigate with Social Workers to help protect children and decide whether an offence has been committed.

Removing a child from its home is something that happens very rarely. Social workers will do everything possible to keep children with their families.

Social Workers in the Disability Team work only with Children with Disabilities – they have a lot of experience and help many families. They listen to parents and their children, and make sure their views and wishes are taken fully into account. They help families make decisions about the best way forward.

If you feel you need additional help to care for your child, think about asking for an assessment by a social worker. They will try to help you find the right support. If you are not sure and just want to talk to someone about this, contact the Children with Disabilities Team on 01642 579160.

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EducationMy son has a fantastic education and integrates with other members of the class. He really enjoys mixing with the other pupils.

• Specialist education can take place in mainstream schools, in resource bases within mainstream schools or in one of the special schools for children with more complex needs.

• Some children will attend The Cleveland Unit - a Child Development Centre and Assessment Nursery for Children Living in the South Tees Area.

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Many children will experience difficulties at some point in their time in pre-school and school. The vast majority of these children will have their needs met through their mainstream school or early years setting.

A small percentage of pupils have highly significant, long-term difficulties and may require a statutory assessment, which could lead to an Education Health and Care (EHC) Plan being created. This document specifies your child’s additional needs and outlines how these should be met including information about health and social care support.

Some young children are referred to the Cleveland Unit, which is based at James Cook Hospital. The Cleveland Unit works closely with parents and carers and provides support, help, information, and advice including a Portage Service. Portage is a home visiting educational service for pre-school children. It aims to support the development of young children’s play communication, relationships and participation in family life. Portage tries to make

learning fun for all the family. To contact the Portage service, please contact Cleveland Unit on 01642 854288.

Sure Start aims to support all families with young children – children with disabilities can be provided with additional support to attend a Nursery. To know more about Sure Start or for further information, ring Middlesbrough Family Information Service on 01642 354200.

The Special Education Needs (SEN)

assessment Team 0-25 deals with all

aspects of special educational needs including assessments, reviews, placements and transitions.

The team works closely with a

wide range of people and agencies

including parents, schools, post 16 providers, Educational

Psychology Service, the Portage Service, Health professionals, pre-school settings and Social Workers. The SEN Assessment Team 0-25 can be contacted on Tel: 01642 201828, 201830 or 201833.

The Information, Advice and Support Service (formerly known as Parent Partnership) can help with issues relating to SEN and Disabilities. They

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support children and young people with SEN and/or disabilities, and their parents. The service is totally free, impartial and confidential. The focus is mainly on education for children and young people with SEN, but they can help with questions about Health and Social Care as well. Call 01642 201872 and ask for the IAS Service.

The Educational Psychology Service supports children, their families and schools where there is an identified vulnerability. They carryout assessment work with follow-up advice, strategies and recommendations for future action. The service can be contacted on 01642 201861.

You may already be in touch with an Educational Psychologist, Portage worker or Special Educational Needs consultant who will be able to provide information about the educational options for your child. The common aim for everyone involved is to promote the inclusion of children with special educational needs in the appropriate setting to ensure all children’s needs are appropriately met.

Most children with special educational needs will be supported at their local neighbourhood school. There are some mainstream schools in Middlesbrough that have additional resources for children with particular special educational needs. For very young children with severe special education needs, there are nurseries with extra resources located in two special schools and places in a

designated nursery that has additional resources. The Children’s Service for the Visually Impaired (01642 354353) and the Children’s Service for the Hearing Impaired (01642 354354) can both assist in supporting children in school when necessary by providing assessment, equipment and advice to teachers.

Middlesbrough also has special schools for children and young people who have complex special educational needs.

If you are not sure about your child’s school and how well it is meeting your child’s needs you should talk to your child’s teacher or the Head Teacher.

Home and Hospital Teaching Service provide education for children and young people who are unable to attend their usual school because they are in hospital, recovering from illness, have long term medical problems or have mental health issues. For more information, the service can be contacted on 01642 354370.

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Safety at homeAre your children safe?

“Now the home has been adapted for Jacob to move around in, I feel at ease and know it won’t be a struggle for him.”

• It is a challenge for all parents and carers to keep their children safe regardless of whether they have a disability or not.

• With the right education, information and equipment, injuries in the home can be prevented.

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Occupational Therapists offer help, assessment and advice to the parents and carers of disabled children and young people where a child’s illness or disability may have an impact on daily life.

They provide help and support on daily routines and activities that range from personal care (washing, dressing, and toileting) to education, work and leisure activities (games, sport, hobbies and social activities).

They also provide advice and information to keep your child safe at home whilst giving them as much freedom and independence as possible so they can thrive and grow. There is a range of equipment and additional aids available that can support you with this.

The Occupational Therapy Service can offer advice on adapting your home to ensure that your child can access essential facilities such as a bath or shower and a toilet. There is also a Staying Put Agency, which provides an advice and repair service to enable older, vulnerable and disabled people to stay in their own home.

If you are not sure what to do about this, talk to your doctor, your Health Visitor or contact the Middlesbrough Team for Children with Disabilities on 01642 579160.

Cleveland Fire ServiceChildren and young people with disabilities can be more at risk if there is a fire in the home. Some children with disabilities might be more likely to cause a fire. Most fires in the home can be prevented by taking some basic and common sense precautions. Many people are not aware that the Fire and Rescue Service will come and visit your home, completely free of charge, at a time that suits you, to carry out a free Home Safety Check. Call 01429 874063 for more information.

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Short Break Services“A family day with no worry about costs or travelling, and lots of staff means that if anything goes wrong with my son or if I need help on the day, there are staff around to help and this takes the pressure off me.”

• Short break services can help families and children and young people stay together.

• Children can have the opportunity to try a new activity or spend time with other children.

• Parents and carers can have a rest and have time for themselves.

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Previously called “respite care”, short break services provide families with a break from caring and children with the opportunity to take part in social opportunities and activities. Sometimes the service supports children and their families taking part in activities and outings together.

Short break services exist to help children, young people and their families to have the sort of short break that other families take for granted. A short break can be for an hour or a day or for several days. It can take place anywhere – in a child’s home, in a special centre or during a trip to a cinema or other activity.

What short breaks are available?There are many different types of short break services and not all of them are right for every family. Some are available to most families and some are for those families who most need support. Short breaks might include the following:• The child or young person

attending one of the many youth clubs, play schemes or activity groups that are available for all children.

• The family taking part in social events, activities or outings together.

• A support worker taking the child or young person out or helping in the home. The worker may be employed directly by the family or provided by the Council or by another agency.

• The child or young person spending time at a specialist group or club or at a specialist short break centre.

There are many organisations that now provide short break services for children with disabilities in Middlesbrough. Not all of them will be appropriate for your child. Your social worker or the Short Break Facilitator will help you sort out which is best for you.

Free outings and events are advertised in Disability Matters (see page 6). For more information about other sorts of short break, contact the Short Breaks Facilitator on 01642 579162 / 579169.

Direct ApplicationsSome families do not want a social worker assessing their needs and just want a low level of short break service. For these families a short break can be accessed without Social Worker, this is a direct route to apply for the support, and is known as a Direct Application. Families can complete a simple application form and plan. They need a letter of support from a doctor, paediatrician, community nurse, teacher or other professional who knows the child well. This professional would be asked to confirm that the child cannot do things that children of their age would usually do. A Direct Application can only be accessed if there are no safeguarding concerns around the family.

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Direct PaymentsFamilies who have been assessed as needing a short break service might have a Direct Payment. This is money provided to them by the Council so that they can purchase their own service or employ their own support worker. If you would like to know more about direct payments please ring 579160 and someone will send you a copy of the Direct Payment information guide.

Individual budgetsIndividual Budgets are an innovative way to work with families needing support through Children’s Services and have been successfully running in Middlesbrough since 2008. Instead of a family being provided with a service, a budget is identified using an agreed resource allocation system. Work with the family then takes place to plan how that budget can be used to meet the child’s and family’s needs. This can be by purchasing existing services or by developing new and imaginative ways of using the money.

Please contact the Short Break Facilitator (01642 579162 / 579169) for further details about all short break services or a copy of the following documents:• Short Break Statement• Short Break Eligibility Criteria

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Growing up and Transitions“I worried about what would happen when Jimmy left school. The Transitions team helped us to plan for the future.”

“I have always been open and honest with Jane about love and sex. I’m pleased she heard everything correctly from me.”

• At this stage your child may be aware of being different from other young people.

• If you are concerned about how to approach the subject of puberty and sex, there is help available.

• Make sure you discuss future plans early, ready for when your child leaves school.

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Many parents/ carers of young people with disabilities can be anxious about their child growing up and changes that their child will face in life. Transitions or Preparing for Adulthood may involve things such as moving on from school to college, work or training; becoming more independent/ developing life skills; getting around in the community; managing friendships and relationships and thinking about support and accommodation for the future.

Young people in Year 9 at school (age 14) normally start to think about their future at their annual education review. This meeting will involve a number of different people who will work together to provide information and support and begin the planning process.The young person will be supported to think about life after school as they become a young adult.

This is an opportunity to discuss plans for the future • Your son/daughter may have an

Education Health and Care Plan which will help everyone work together to achieve the best outcomes possible for the young person.

• Your son/daughter may need emotional support to help them understand their disability or to manage relationships.

• As a parent/carer you may also need some advice as to how to support your young person

• The best outcomes can be achieved by working together and careful planning so it is important that the process begins, even if at a low level, at this stage.

In Middlesbrough there is a Transitions Team which supports young aged 14-25 with disabilities as they move from children’s services to adult social care services. The team will meet the young person and their family to gather information, ensure that they meet the criteria for support from the team and then work with the young person, their family and other agencies to begin planning for the future.

The Team consists of:• A Team Manager• Principal Practitioner• A Support Assistant• Social Workers• A Health Facilitator

The multi-agency team has close working links with Person Centred Planners, CAMHS / LD CAMHS, Stronger Families teams, schools, colleges and other agencies.

A Transitions Information Guide is available by calling Transitions Team on 01642 303902.

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Useful Contact NumbersSERVICE / TEAM / ORGANISATION CONTACT DETAILSBlue Badge Scheme, Middlesbrough Council (MBC) .................... 01642 726004CAMHS / LD CAMHS...................................................................01642 529720Changing Places/ RADAR Keys (Shopmobility) ............................ 01642 254545Childline ..................................................................................... 0 8 0 0 1 1 1 1Children with Disabilities Team, MBC .......................................... 01642 579160Children’s Service for the Hearing Impaired ................................ 01642 354354Children’s Service for the Visually Impaired ................................ 01642 354353Citizens Advice Bureau (Middlesbrough) .................................... 0344 499 4110Cleveland Fire & Rescue Fire Safety ............................................ 01429 874063- Free Home Safety ChecksCleveland Unit ........................................................................... 01642 854288Contact a Family ........................................................................ 0808 808 3555Children’s Continence Service .................................................... 01642 737737Dietetic and Nutrition Service ..................................................... 01287 284074Disability Matters / Text Alert Service .......................................... 01642 579176Epilepsy Nursing Service .............................................................. 01642 854487, 854489 or 822717Family Fund ................................................................................ 01904 621115Family Information Service, MBC ................................................ 01642 354200Information, Advice and Support Service, MBC........................... 01642 201872Middlesbrough Cycle Circuit........................................................ 01642 728555Middlesbrough Portage Service (Cleveland Unit) ........................ 01642 854288Middlesbrough Sportability Club ................................................ 07988 201107Middlesbrough Welfare Rights ................................................... 01642 729242National Youth Advocacy Service ............................................... 0808 808 1001National Autistic Society ............................................................ 0808 800 4104Community Hub at North Ormesby ........................................... 01642 726190National Society for the Prevention of Cruelty to Children .......... 0808 800 5000Paediatric Occupational Therapy ................................................ 01642 873901Paediatric Speech and Language Therapy Service ....................... 01642 516780Patient Advice & Liaison Service (PALS)....................................... 0800 028 2451South Tees Trust Tees, Esk and Wear Valley NHS Trust .......................................... 0800 052 0219Parents for Change ..................................................................... 01642 200526 or 07584 055639Special Education Needs Team, MBC .......................................... 01642 201828, 201830 or 201833Staying Put Agency, Middlesbrough Council ............................... 0800 587 5184Short Breaks Facilitator, Middlesbrough Council .......................... 01642 579162 or 01642579169South Tees Home Support Service, MBC ..................................... 01642 579177Transitions Team, MBC ................................................................ 01642 303902

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Please note the pictures of booklets are for illustrative purposes only.

The Children with Disabilities Team and Parents 4 Change have jointly produced a range of other booklets:

• Direct Payments• Short Break Support through Individual Budgets• Behaviour• Sleep• Keeping Children with Disabilities Safe• Sensory Support• Transitions Information Guide• Special Educational Needs and Disability Support through a

Personal Budget.

If you would like a copy, please contact either Children with Disabilities Team or Parents 4 Change.

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Children with Disabilities Team2nd Floor Hemlington Health Centre

21-25 Viewley Hill CentreHemlington

MiddlesbroughTS8 9JH

Tel: 01642 579160Fax: 01642 579172

This booklet was given to you by:

The information on the booklet was correct at the time of printing March 2016.

Contact Number:

Parents 4 ChangeParents4change@hotmail.co.uk01642 200526 or 07584 055639

www.parents4change.co.uk

If you have any comments regarding this booklet, we would like to hear from you.

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