AUTISM SUFFOLK Information Handbook 2010
For parents and carers of children aged 5 – 13 with an Autism Spectrum Disorder
Gaynor Vincent
10/1/2014 October 2014 Online Edition v1.2 Foreword This is the new online edition of our successful Little Blue Book. Autism Suffolk would like to thank everyone who helped us compile this guide, including colleagues from the National Autistic Society, Suffolk County Council, Activities Unlimited, local voluntary groups and the National Health Service. The publication of the new online version of the Little Blue Book has been made possible thanks to the ongoing support and guidance from Suffolk County Council’s Children’s and Young Peoples services department. Please let us know if you would like to be considered for inclusion when we update the Guide next. Also please let us know if your organisation’s details are incorrect. We can be contacted at [email protected]. Please mark emails FOA Little Blue Book Update.
Key phone numbers
Autism Suffolk 01473 632700
National Autistic Society Autism helpline 0808 800 4104
Activities Unlimited 01473 260026
Sendiass (Formerly Parent Partnership) helpline 01473 265210
National Benefits Enquiry Line 0800 220 674
Customer First (first point of contact for Social Care in 0808 800 4005 Suffolk)
Disclaimer Whilst we have tried to ensure that all information in this Guide is accurate, Autism Suffolk cannot accept liability for any matters connected with or arising from its use. In particular, please note that inclusion does not imply recommendation.
i
1. How to use the Online Little Blue Book ...... 5 2. Family support ...... 6 a. Support from autism-specific organisations ...... 6 Autism Suffolk ...... 6 National Autistic Society (national services) ...... 7 NAS Branches in Suffolk ...... 9 Autism Anglia ...... 10 Asperger East Anglia ...... 10 Parents’ groups/drop-ins/support groups - autism specific ...... 11 b. Support for all disabilities ...... 15 Buddies @ Home ...... 15 Carer’s assessment ...... 15 Carers Direct ...... 16 Cerebra ...... 16 Children’s Centres ...... 17 Contact a Family ...... 18 Customer First...... 18 Gateopener ...... 19 Integrated Services for children...... 19 Home-Start ...... 20 MENCAP DIRECT ...... 21 Parents’ groups/drop-ins/support groups – NOT autism specific ...... 21 Relate ...... 24 Sibs ...... 25 Suffolk Family Carers ...... 25 Suffolk Families Information Service ...... 26 Suffolk Young Carers ...... 26 3. Education ...... 27 a. Extra help in mainstream schools ...... 27 Individual Education Plans (IEPs) ...... 27 Statements and Education, Health and Care Plans (ECHP) ...... 27 County Inclusive Resource ...... 28 Sendiass (formerly Parent Partnership Service) ...... 29 School Preference Advisors ...... 29 Behaviour Support Service ...... 29 Educational Psychology Service (EPS) ...... 30 b. Special Schools ...... 30 Special schools in Suffolk ...... 30 Autism-specific schools ...... 30 c. Education other than at school ...... 32 First Bases ...... 32 Home Education...... 33 Pupil Referral Units (PRUs) ...... 34 d. Getting legal advice about education ...... 34 ACE (Advisory Centre for Education) ...... 34 Coram Children’s Legal Centre ...... 35 IPSEA ...... 35 e. Other education services ...... 36 National Autistic Society education services ...... 36 School transport ...... 36 Contact a Family SEN National Advice Service ...... 37 4. Health ...... 38 Autism Diagnostic Service for Suffolk ...... 38 Mental Health Services for Children & Young People in Suffolk ...... 38 Child Development Centres (CDCs) ...... 39 Community Nursing Team ...... 39 Community Paediatricians ...... 39 Dentists ...... 40 GPs ...... 40 Health Visitors and Specialist Health Visitors ...... 41 Irlen East ...... 41 National Autistic Society health services ...... 41 Occupational Therapists (OTs) ...... 42
ii Patient Advice and Liaison Service (PALS) ...... 42 Physiotherapists ...... 42 Primary Mental Health Care Workers ...... 43 School Nurses ...... 43 Speech and Language Therapists (SALTs) ...... 43 4YP (Suffolk Young People’s Health Project) ...... 43 5. Benefits and other financial help...... 45 a. Benefits to which parent/carers may be entitled ...... 45 Disability Living Allowance ...... 45 Carer’s Allowance ...... 46 Child Tax Credit ...... 47 b. Organisations which can help you claim ...... 48 DirectGov and the Benefits Enquiries ...... 48 National Autistic Society benefits service ...... 48 Disability Advice Services in Suffolk ...... 49 Citizens’ Advice Bureaux ...... 50 Contact a Family ...... 53 Gateopener ...... 54 c. Other financial help ...... 54 AJS Legacy ...... 54 Family Fund ...... 55 Direct payments and Suffolk Independent Living ...... 55 Cerebra ...... 56 Warm Home Discount Scheme ...... 57 6. Leisure activities ...... 58 a. Support to help your child take part ...... 58 Activities Unlimited ...... 58 Buddies’ You’ve Got a Friend scheme ...... 58 National Autistic Society information sheets ...... 59 b. Clubs for children with autism ...... 59 c. Clubs for children with any disability ...... 63 d. Drama, singing, dance and arts ...... 65 e. Sports ...... 66 f. Other activities ...... 71 7. Respite and befriending ...... 75 Befriending Scheme (National Autistic Society) ...... 75 Buddies - Tots ...... 75 Buddies’ You’ve Got a Friend scheme ...... 76 Crossroads Care ...... 76 Suffolk Link Scheme ...... 77 Direct payments and Suffolk Independent Living ...... 77 8. Transport and travel ...... 78 Air travel ...... 78 Blue Badge scheme ...... 78 Bus passes ...... 80 Disabled Person’s Railcard ...... 80 London congestion charge ...... 81 RAC family membership ...... 81 School transport ...... 82 Seatbelts and harnesses ...... 83 NAS specialist travel insurance ...... 83 9. Other services and organisations ...... 84 a. Advocacy ...... 84 VoiceAbility Suffolk (Total Voice) ...... 84 b. Your legal rights at work ...... 84 c. Going to church ...... 85 d. Bereavement support for your child ...... 86 National Autistic Society ...... 86 RD4U (Youth Branch of Cruse) ...... 86 Child Bereavement Trust ...... 87 Winston’s Wish...... 87 e. Other support ...... 88 RADAR Key ...... 88 Autism Alert Cards ...... 88
iii Suffolk Parent Carer Network...... 89 10. INDEX ...... 90
iv How to use 1. How to use the Online Little Blue Book Finding Information: Information on services and contacts can be found in this online version of the little Blue book in three ways.
1) Looking at the Table of Contents entries at the start of the book 2) Looking at the index entries at the end of the book 3) Using the PDF search function.
When you open a PDF document such as the Little Blue Book you should be able to search the document using the PDF Search Tool. If the tool is not visible when you open the document, you can get to it by pressing the ‘Ctrl’ and ‘f’ key simultaneously. The search box will pop up on the right hand side your document. Enter the item you are searching for into this box and then click on the forward and back arrows to navigate through the document.
The PDF document
search window
Printing This document can be printed out in its entirety or by section in the normal way.
Updating As with all online publications they can become out of date very quickly. If you spot any areas need updating or if you or your organisation’s details are incorrect please let us know and we can amend in the next version of the document. We can be contacted at [email protected]. Please mark emails FOA Little Blue Book Update.
5 Family Support 2. Family support a. Support from autism-specific organisations
Autism Suffolk
01473 632700
Grange Business Centre, Tommy Flowers Drive, Kesgrave, IP5 2BY
We can offer you: Support from one of our Family Support Workers. Telephone support. Our phone line is usually open between 10 - 3 on week days. At other times there is an answer phone. Email support. A three-day specialist parent programme (called help!) which our Family Support Workers deliver: o It offers support and information for parents and carers of children aged 5 - 13 who have a relatively recent diagnosis of an autism spectrum disorder. o It runs in various locations across Suffolk (usually including Kesgrave, Lowestoft, and Thurston near Bury). A one-day version of the help! Programme specifically for men (fathers, step-fathers, grandfathers, uncles, etc.). This is run at least once a year. Follow-on sessions from the help! programme on topics such as anger management and dealing with your child’s sensory needs. Monthly support sessions for parents/carers at various locations across Suffolk. Our Family Support Workers usually attend these. Production of this Online Guide, plus other information you might need about autism and related issues. Our Newsletter, which we plan to reintroduce in the New Year. 6 Family Support Parent to parent support through our Facebook Group. A well-stocked lending-library containing a wide range of books, DVDs and sensory equipment. If your child has passed their 14th birthday, you will remain eligible for all our services, except a home visit and the help! Programmes. We work closely in partnership with colleagues in Health, Education, Social Care and voluntary organisations.
National Autistic Society (national services)
NAS Autism Helpline
0808 800 4104 (Monday - Friday, 10 a.m. - 4 p.m.)
Autism helpline, National Autistic Society, 393 City Road, London, EC1V 1NG
Direct from the website or [email protected]
www.autism.org.uk
Confidential information and advice for people with an autism spectrum disorder and their families. Contact them for NAS Information Sheets.
NAS Befriending
01635 869068 Befriending Manager (London and South East)
www.nas.org.uk
The NAS recruits and trains volunteers to support people with an ASD and their families. The volunteers are not experts, but they are friendly people who are willing to learn and who would like to do something to help.
7 Family Support Your family can apply to be matched with a local volunteer who could regularly spend some time with your child or all your family. There isn’t always a volunteer available locally in a rural county like Suffolk. However, you could apply for e-befriending. You would be matched with a volunteer from anywhere in the UK and have contact with them via e-mail.
NAS Information sheets
0808 800 4104
Autism helpline, National Autistic Society, 393 City Road, London, EC1V 1NG
You can find these on the NAS website by locating the A-Z grid of topics on the home page and clicking on the first letter of the title of the information sheet you are interested in.
The NAS produces information sheets aimed at supporting families, including help for brothers and sisters. You can request them from the Autism helpline or print them from the NAS website.
NAS EarlyBird Programme This programme has been developed by the NAS for parents of children up to the age of 5 with a confirmed diagnosis of an ASD. It is a three-month programme working with six families at a time. It also brings families together for group daytime sessions. Families are visited regularly at home as part of the programme. EarlyBird Teams in Suffolk are based in Ipswich, Lowestoft and Bury St Edmunds. Families with pre-school children are usually put in touch with these Teams at the time of diagnosis.
8 Family Support NAS Branches in Suffolk
In general, branches are run by volunteers and provide a range of activities which may include: o Self-help support for parents and carers. o Information and advice. o Fundraising activities for existing or future projects. o Organising leisure activities/respite care/holiday schemes. Contact your local branch to see what they offer. There are two in Suffolk. NAS West Suffolk Branch
07795 238778
wsnas.blogspot.com (Note - no www. in web address)
NAS Lowestoft & North Suffolk Branch
07798 882583
http://lowestoftnorthsuffolknas.blogspot.com
9 Family Support Autism Anglia
01206 577678
Century House, Riverside Office Centre, North Station Road, Colchester, Essex, CO1 1RE
www.autism-anglia.org.uk (downloadable application form for Alert Card)
Autism Anglia is a charity, operating mostly in Essex and Norfolk. It issues a credit card sized autism alert card which can be carried at all times and displayed if your child finds themselves in a situation where they cannot easily give an explanation about their condition. It also assists the police and emergency services to identify that they are dealing with someone who has autism. Proof of diagnosis is required before a card can be issued - eg, a diagnosis letter, a Statement of Special Educational Needs, a letter from a professional, a medical report or assessment. Cards are free but there is a £1.00 fee for replacements. Asperger East Anglia
01603 620500
Charing Cross Centre, 17/19 St John Maddermarket, Norwich, NR2 1DN
www.asperger.org.uk
Charity for people of all ages affected by Asperger syndrome. They offer a parent advisory service. They run groups in Norfolk and Suffolk.
10 Family Support
Parents’ groups/drop-ins/support groups - autism specific
Please phone to check these details are correct before you visit, as times and dates can change.
BURY ST EDMUNDS
Who for For parents and carers of children with an ASD Family Support Worker from Autism Suffolk usually attends
Where Hyndman Centre (in the lounge), Hospital Road, Bury St Edmunds, IP33 3NN
When Last MONDAY of the month during term-time 9.30 a.m. - 11.30 a.m.
Contact 01473 632700 (Autism Suffolk). Please phone to check these details are correct before you visit, as times and dates can change
FELIXSTOWE PARENT TO PARENT SUPPORT
Who for For parents and carers of children with an ASD and families awaiting a diagnosis Family Support Worker from Autism Suffolk usually attends
Where Grounds of Felixstowe Academy (Orwell High School) Maidstone Road, Felixstowe, IP11 9EF
When Monthly Tuesday 12.30pm – 2.30 pm
Contact Autism Suffolk 01473 632700
11 Family Support HADLEIGH
Who for For parents and carers of children with an ASD Family Support Worker from Autism Suffolk usually attends
Where Brett River Children’s Centre, 1ST Floor Health Centre, Market Place, Hadleigh, IP7 5DN
When First TUESDAY of the month during term-time. 1.00 p.m. – 3.00 p.m.
Contact 01473 632700 (Autism Suffolk). Please phone to check these details are correct before you visit, as times and dates can change
HAVERHILL
Who for For parents and carers of children with an ASD Family Support Worker from Autism Suffolk usually attends
Where On Track Children’s Centre, 1 Strasbourg Square, Haverhill, CB9 0HR
When Third THURSDAY of the month during term-time 12 noon - 2 p.m.
Contact 01473 632700 (Autism Suffolk). Please phone to check these details are correct before you visit, as times and dates can change
IPSWICH
Who for For parents and carers of children with an ASD Family Support Worker from Autism Suffolk attends
Where Colchester Road Baptist Church, Ipswich, IP4 4ST 10.00am - 11.30am, Last WEDNESDAY of the month in term time When
Contact 01473 632700 (Autism Suffolk). Please phone to check these details are correct before you visit, as times and dates can change
12 Family Support
IPSWICH AUTISM SPECTRUM DISORDER SUPPORT GROUP
Who for For parents and carers of children with an ASD Family Support Worker from Autism Suffolk often attends
Where The Willows Children’s Centre, Magdalene Close, Ipswich, IP2 9UX
When 10 a.m. - 12 noon on second THURSDAY of the month term time
Contact 01473 702652 (Jane Jordan, Specialist Health Visitor)
NORTH LOWESTOFT PARENT GROUP run by NAS LOWESTOFT AND NORTH SUFFOLK BRANCH
Who for For parents and carers of children with an ASD Family Support Worker from Autism Suffolk usually attends
Where The Ark Children's Centre, Water Lane, Lowestoft, NR32 2NH
When 12.30 p.m. - 2.30 p.m. on second TUESDAY of month during term time
Contact 07798 882583 (branch mobile) or email [email protected]
NORTH LOWESTOFT PARENT GROUP run by NAS LOWESTOFT AND NORTH SUFFOLK BRANCH
Who for For parents and carers of children with an ASD Family Support Worker from Autism Suffolk usually attends
Where Whitton Life Centre, The Green, Whitton, Lowestoft, NR33 9AZ
When 12.00 p.m. - 2 p.m. on fourth TUESDAY of month during term time
Contact 07798 882583 (branch mobile) or email [email protected]
13 Family Support
SOUTH LOWESTOFT PARENT GROUP run by ASD SUPPORT
Who for For parents and carers of children with an ASD Family Support Worker from Autism Suffolk sometimes attends
Where Kirkley Centre, London Road South, Lowestoft, NR33 0AZ
When On third THURSDAY of the month 6.30 p.m. - 8.30 p.m.
Contact 07793 545487 (Becky Chamberlain)
LOWESTOFT run by ASD SUPPORT
Who for For parents and carers of children with an ASD
Where Gunton Community Hall, Hollingsworth Road, Lowestoft NR32 5DF
When 10am - 12 noon, 1st MONDAY of month term-time only
Contact 07793 545487 (Becky Chamberlain)
SUDBURY GROUP run by NAS WEST SUFFOLK BRANCH
Who for Open to anyone on the autism spectrum, their families and carers. Family Support Worker from Autism Suffolk usually attends
Where Number Seventy Two, 72 North Street, Sudbury, CO10 1RF
When 9.30 - 11.30 on the second THURSDAY of the month term time
Contact 07795 238778 (West Suffolk Branch) or email [email protected]
14 Family Support b. Support for all disabilities
Buddies @ Home
0300 303 9076
Unit 1, Apple Tree Barns, Folly Lane, Copdock, Ipswich, Suffolk, IP8 3JQ
http://dimensions-buddies.org
A tailored service providing 8 weeks of support a year at home to help you achieve a goal that you’ve identified.
Carer’s assessment
0808 800 4005 (Customer First at Suffolk County Council)
Suffolk County Council, Endeavour House, 8 Russell Road, Ipswich, Suffolk IP1 2BX
www.suffolk.gov.uk
If you look after a child with a disability, you have a right to ask Social Care to make an assessment of your needs as a carer. You do not have to be the child's parent to ask for a carer’s assessment, but you must have parental responsibility for the child. This assessment should consider your well-being, including health and safety issues, and important commitments like relationships and employment. Services that may be available are short breaks, additional childcare or access to schemes and projects that ensure you have time to yourself whilst offering an enjoyable experience for your child. 15 Family Support Carers Direct
0300 123 1053 (Lines are open 9 a.m. - 8 p.m. Monday - Friday, 11a.m. - 4 p.m. at weekends. Request a free call back or an interpreted call back in over 170 languages
Via website
www.nhs.uk/Carersdirect/Pages/CarersDirectHome.aspx
Free, confidential information and advice for carers (part of the NHS Choices service).
Cerebra
0800 328 1159
2nd Floor Offices, The Lyric Buildings King Street, Carmarthen, SA31 1BD
www.cerebra.org.uk
A national charity which aims to help children under 16 with brain-related neurological conditions, including autism spectrum disorders. Their services include (subject to availability): A grant scheme that funds equipment and services that help make life that little bit easier or more fun for your child. Their website gives a list of items they can and cannot fund, or phone them to ask if they can fund what you have in mind. A voucher worth £350 towards the cost of having a solicitor prepare a will and discretionary trust to make provision for your child’s future. Phone or look at website for who can apply for one of these.
16 Family Support Their Innovation Centre (CIC) can produce novel and unique equipment for disabled children either as a one-off for your child or in small batches. Again, phone or look at the website for more details. A Speech and Language Therapy Voucher scheme which will fund up to £500 towards the cost of private speech therapy for children who need it but can't get it. Again, phone or look at the website for more details. A holiday home in Pembrokeshire Sleep service - advice by post or phone from one of Cerebra’s sleep team. Stress helpline for parents and carers - 0800 043 9385 Personal portfolios Many fact sheets available to download from their website.
Children’s Centres
0845 60 800 33 (Suffolk Families Information Service) (Lines open Monday - Friday 9.00 a.m. to 5.00 p.m.) Text 07624 80 10 60
www.suffolk.gov.uk
Centres offer a range of services for families with children from birth to five. Their services can include family health services, childcare, activities for pre-school children, information and support for parents. There are nearly 50 children’s centres across Suffolk. You can find out where they are from Suffolk Families Information Service or from your Health Visitor.
17 Family Support Contact a Family
National Suffolk Rachel Hill, Senior Family Worker 01473 614452 National helpline: 0808 808 3555
Liz Boyle, Parent Rep. 07508 279791 209 - 211 City Road, London, ECIV 1JN
[email protected] [email protected]
www.cafamily.org.uk
This is a national charity which provides support, advice and information for families with disabled children (0 - 19 years), no matter what their condition or disability. Their national helpline, deals with general enquiries and also has specialist advisors to help you check your welfare benefits. They have Special Educational Needs advisory service. Contact a Family has an online service which is a one stop shop for benefits advice and money saving tips. Go to their main web-address and click through to Cash Counts.
Customer First
0808 800 4005 (free from landlines and most mobiles) - opening hours are 08:00 to 18:45 Monday to Friday
PO Box 771, Needham Market, IP6 8WB
18 Family Support To get in touch with Social Care Services for Suffolk, contact Customer First. They are a specialist call centre who will direct your call to the most appropriate professionals. Contact Customer First if: o you would like to ask for an assessment (CAF) to see if additional help is available for your child and/or family; o you want to apply for a Carer’s assessment; o you want to apply for a Blue Badge; o you are worried about a child’s safety.
Gateopener
01638 510463
20A Hampstead Avenue, Mildenhall, Suffolk, IP28 7AS
www.gateopener.org.uk
Provides free disability information to people living in Suffolk and East Cambridgeshire. They also have a computer programme which you can use to find grant- giving charitable trusts and foundations.
Integrated Services for children
Integrated Services offer support to children, young people aged between 0-11 and their families. For young people with additional needs services continue until the age of 25 and also important support transitions. Services Include: Community Development, Health Visiting, Children’s Centres, 0-11 and 12+ Teams and School Nursing. Children and young people with Autistic Spectrum Conditions are included in the integrated service offer, however there are some very 19 Family Support specific services such as Little Stars groups in Children’s Centres and the Support from Youth Support Workers at Annual Review Meetings and through completion of the S139A learning difficulties and assessments. The Common Assessment Framework is used within Integrated Services to identify support for children, young people and their families who have needs not met by their current service provision. This framework has enabled families to co-ordinate specific support pertaining to the Autistic Spectrum with other services (housing, adult service) through one plan. You can contact the service through Customer First (0808 800 4005) and the Families Information Service 0345 60 800 33). Further service detail can be found at http://www.suffolk.gov.uk/your- council/about-suffolk-county-council/children-and-young-peoples- services/
Home-Start
Home-Start South Suffolk and District
Tel: 01473 822822 Fax: 01473 822241
Unit 2, Hadleigh Enterprise Park, Crockatt Road, Hadleigh, Suffolk, IP7 6RJ
http://www.homestartsouthsuffolk.co.uk/
Mid-Suffolk Home-Start
01379 678552
http://www.homestartmidsuffolk.org.uk/
20 Family Support Home-Start East Suffolk
01473 621104
8a The Square, Martlesham Heath, Ipswich IP5 3SL
http://www.homestarteastsuffolk.org.uk/
This is a national charity with three branches in Suffolk. They help families who have at least one child under five. A trained volunteer (matched with you) visits you at home once a week and you decide together how they can best help you. Some schemes also have Family Group meetings. This is not a specialist autism service.
MENCAP DIRECT
Contact Mencap Direct for Local Groups Online www.mencap.org.uk Telephone: 0808 808 1111 Lines open 9am – 5pm Monday-Friday These local groups give help and advice to people with learning difficulties and their families. They may also provide leisure activities - eg, Ipswich group has a Darts League and a thriving social group for people who are 16 and over at Westbourne School on Tuesday evenings. This is not a specialist autism service Parents’ groups/drop-ins/support groups – NOT autism specific
21 Family Support Please phone to check these details are correct before you visit, as times and dates can change.
EYE: Opportunity Group (under 5s)
Who for Children aged 0 - 5 with any additional needs, and their parents/carers
Where 26 Castleton Way, Eye, IP23 7BH
When Monday and Wednesday 9.30 a.m. - 11.30 a.m. and 12.30 p.m. - 2.45 p.m. accompanied by Parent/carer. Thursday morning’s 9.30am to 11.30am child unaccompanied.
Contact 01379 870975 (Nicki Trevitt)
EYE: Opportunity Group (school age)
Who for For parents/carers of school-age children with all additional needs
Where 26 Castleton Way, Eye, IP23 7BH
When 10 a.m. - 12 noon (fortnightly on THURSDAYS) Parents/carers only
Contact 01379 870975 (Nikki Trevitt)
FELIXSTOWE: Opportunity Group
Who for For children 0-5 with any additional needs, and their parents / carers.
Where Ground of Felixstowe, Academy, Maidstone Road, Felixstowe, IP11 9EF
When Tuesdays 9:30 to 12pm Thursdays 1pm to 3pm
Contact Corrine Franklin 01394 279 232 or 01394 286399
22 Family Support
HALESWORTH: Smarties Group Hosting on behalf of NAS Lowestoft and North Suffolk
Who for Children 0-5 with additional needs and their parents/carers
Where Dragonflies Children’s Centre, Wisset Road, Halesworth, IP19 8BT
When Every 3rd Wednesday of the month from 10.00am to 12.00pm
Contact 01986 874865 (Children’s Centre)
HAVERHILL: Cartwheels Children's Centre SENSORY SUPERSTARS SESSION
Who for Adults, Young People, Children & Pre-school
Where 1st Floor, Norton Road, Haverhill, CB9 8LU (sensory equipment available)
When Monday to Friday 9.00am to 5.00pm
Contact 01440 760500 (Children’s Centre) Lynda Handshaw Suffolk Families Information Service 0845 608 0033 [email protected]
STANTON: Over the Rainbow Opportunity Group
Who for Children aged 0 - 5 with any additional needs, and their parents/carers
Where Bluebells Children’s Centre, Bury Lane, Stanton, Bury St Edmunds, IP31 2DE
When Monday to Friday 8.30am to 5.00pm Debbie Frost 01359 254282 (Children’s Centre) or Contact Suffolk Families Information Service 0845 60 800 33 [email protected] 23 Family Support
STOWMARKET: Stepping Stones Opportunity Group
Who for Children aged 0 - 5 with any additional needs, and their parents/carers
Where Chilton Fields, Chilton Way, Stowmarket, Suffolk, IP14 1SZ
When Tuesday 9.30 - 12.00 and Friday 12.00 - 2.30
Contact 01449 – 770645 or [email protected] (please phone to book)
SUDBURY: Opportunity Group
Who for Children aged 0 - 5 with any additional needs, and their parents/carers
Where Phoenix Children’s Centre, Tudor Road, Sudbury, CO10 INP
When Monday to Friday 9.00am to 5.00pm
Contact Hannah Seymour Monday/Tuesday/Wednesday, Claire Frewin Wednesday/Thursday/Friday 01787 888666 or 07894 886151 or Suffolk Families Information Service 0845 60 800 33 email: [email protected]
Relate
Look on the website for individual counsellors’ phone numbers
Look on the website for individual counsellors’ email addresses
www.relatenorfolksuffolk.co.uk
Relate offers relationship counselling to couples, individuals, families and young people over 10 years of age.
24 Family Support Some Relate counsellors offer counselling over the telephone. They are not experts in autism. Relate counsellors charge for their services.
Sibs
01535 645453
Meadowfield, Oxenhope, West Yorkshire, BD22 9JD
www.sibs.org.uk
A national charity for people (children and adults) with a disabled brother or sister. This is not a specialist autism service.
Suffolk Family Carers
01473 835477 (Information Line)
Freepost NATE853, Ipswich, IP6 0ZZ (No stamp required)
http://www.suffolk-carers.org.uk/
This is a local, independent organisation for family carers (which includes all parents, carers, brothers and sisters of children with an ASD).
25 Family Support Suffolk Families Information Service
0845 60 800 33 (Monday - Friday 9.00 a.m. to 5.00 p.m.) If you text them on 07624 801060, they will phone you back
www.suffolk.gov.uk
A Suffolk County Council service providing information to all parents and carers looking for childcare, early education and a range of other services for their children.
Suffolk Young Carers
01473 835430
6&8 Hill View Business Park, Old Ipswich Road, Claydon, Suffolk IP6 0AJ
Via website
www.suffolk-carers.org.uk
A Suffolk Family Carers project working with young people aged 9 to 16 who have a disabled brother or sister. This is not a specialist autism service.
26 Education
3. Education a. Extra help in mainstream schools
Individual Education Plans (IEPs)
Each mainstream school has a Special Educational Needs coordinator (SENCO). The SENCO is responsible for collecting information about your child, including information from you, your child and other people working with your child. The school will use this information to make an IEP, which sets out what your child needs in order to make progress. It may be helpful to the school if you ask to be involved in this or at least have sight of the IEP and be able to offer comments at an early stage. The IEP will help teaching staff to plan for your child, teach them and review their progress. For children with an autism spectrum disorder, targets are likely to focus on communication, social inclusion and flexibility of thought. The IEP will also state if your child needs one of the two main levels of support: 'School Action' (SA) or 'School Action Plus' (SA+) if they haven’t got a statement or Health and Care Plan. The difference between these is that children on ‘School Action Plus’ get more support and are referred to professional services from outside the school (eg, Educational Psychologists) who can give advice and provide more specialist assessments. The IEP is reviewed at least twice a year. Wherever possible, your child will be involved in the reviewing process and setting targets. If your child is not involved, their wishes should be considered in the process.
Statements and Education, Health and Care Plans (ECHP)
Some children do not make progress at the SA or SA+ levels of support. The SENCO may then discuss this with you, and others already involved with your child, to decide whether a statutory assessment of special educational needs is appropriate. This is a very comprehensive assessment which looks carefully at all aspects of your child’s special 27 Education educational needs. It aims to describe in detail the provision that will be required to help meet those needs. The local authority will co-ordinate the Education, Health and Care Plan (ECHP) (formerly statement) process which will include asking for reports from various professionals, such as Educational Psychologists. You, your child’s school, or both, can request a statutory assessment to be made. Once the local authority has carried out the assessment, it can decide to record the information it has in an EHCP (this would have been a Statement prior to September 2014). Your local authority should normally write and tell you whether it is going to write an ECHP and inform you of how long the process will take. Education, Health and Care Plans (EHCP) will start to be introduced from September 2014. All existing Statements of Special Educational Needs will transfer to Education, Health and Care Plans by April 2018 at the latest. Suffolk Local Authority will work in partnership with children, young people and families, all yearly year providers and all schools to phase the roll out. More information can be obtained from Sendias, (formerly Parent Partnership). Until a statement is transferred its contents remain statutory. The ECHP and Statement processes will run in parallel until all ECHP’s have been transferred.
County Inclusive Resource
Staff from the County Inclusive Resource are experienced in working with pupils on the autism spectrum. They advise and support school staff in mainstream schools. A child does not need a statement or Education, Health and Care Plan (EHCP) before a school accesses this service, but does need to have: o a confirmed diagnosis of autism (‘autistic traits’ or ‘a working diagnosis’ is not enough); o Completed two IEP cycles and support at SA+. The service covers the whole of Suffolk, with bases at various schools across the County. 28 Education Referral to the County Inclusive Resource can only be made by your child’s school. Parents cannot refer their child directly.
Sendiass (formerly Parent Partnership Service)
The Sendiass Service covers the whole County. Staff are supplemented by trained volunteer Independent Parental Supporters (IPSs). They can provide you with information leaflets and guides about Special Educational Needs. One-to-one support is available to help you maintain a positive working relationship with your child’s school, including at difficult times. They provide information sessions and support workshops for parents and carers. You can contact the service directly yourself on 01473 265210 - no referral is necessary.
School Preference Advisors
This service is part of the Sendiass remit. The Advisors will help you apply for school places BUT they cannot suggest which school would be best for your child. You can contact the Advisors directly yourself on the Sendiass helpline (01473 265210). This is not a specialist autism service.
Behaviour Support Service
This service supports schools that have pupils with very challenging behaviour - some may have an ASD but others may not. The aim is to help such children stay in mainstream school. Team members are based in the Pupil Referral Units (PRUs) and link closely with the work of the PRUs.
29 Education Referral to the Behaviour Support Service is only through your child’s school. Parents cannot refer their child directly.
Educational Psychology Service (EPS)
Educational Psychologists (EPs) are trained to understand the ways children learn, think and behave. They can offer solution-focused advice and consultation to parents, schools and the local authority. They can make recommendations regarding the needs of the child. They are involved in the statutory assessment process. Parents cannot refer their child directly to this service. It is done through your child’s school. b. Special Schools
The majority of children with an ASD attend their local mainstream school. However, if a special school is felt to be the best option for your child, your local area education office will discuss this with you. Special schools in Suffolk
The Ashley School, The Bridge Ipswich (2-16yrs) Priory School, Bury (9-16 Lowestoft (7-16 yrs) yrs) Beacon Hill School, Ipswich (5-16 Warren School, Lowestoft yrs) Riverwalk School, Bury (3- (3-19 yrs) 16 yrs) Thomas Wolsey School, Ipswich (3– 16 yrs) Hillside School, Sudbury (3-16 yrs) Suffolk One Sixth Form College Ipswich (16-19yrs)
Autism-specific schools
There are no autism-specific schools in Suffolk. You may feel that only an autism-specific school can meet your child’s needs, but it can be extremely difficult to secure funding from the Council for an ‘out of County’ placement.
30 Education Here are some autism-specific schools. Please note, inclusion doesn’t imply recommendation.
Doucecroft School near Colchester, Run by Autism Anglia and provides weekly boarding and day pupil education for children, aged 3 - 19 years with an ASD
01206 771234
Abbotts Lane, Eight Ash Green, Colchester, Essex, CO6 3QL
www.doucecroft.org.uk
Acorn Park School (formerly Eagle House School) An independent, specialist day and residential school for children and young people aged 4 - 19 years with an ASD and moderate to severe learning difficulties, who may also present with challenging behaviour
01953 888656
Andrew's Furlong, Mill Road, Banham, Norfolk
www.acorncare.co.uk
Gretton School For children and young people aged 5 - 19 with Autism Spectrum Disorders
01223 277438
Manor Farm Road, Girton, Cambridge, CB3 0RX
31 Education
www.grettonschool.com
National Autistic Society’s Schools
Anderson School, Bristol Daldorch House School, Ayrshire Helen Allison School, Kent Radlett Lodge School, Hertfordshire Robert Ogden School, South Yorkshire Sybil Elgar School, Middlesex Thames Valley School, Reading
www.nas.org.uk
c. Education other than at school
First Bases
These support children between 3 and 8 years old who have very great difficulty managing in school. They also offer some support to their parents/carers. Children usually spend part of their time in the First Base Unit, and part in their own schools. They operate from Ipswich, Brandon and Lowestoft. Referral is through a professional such as an Educational Psychologist or an Educational Welfare Officer. This is not a specialist autism service.
32 Education Home Education
Some parents chose to educate their children at home. Suffolk County Council can advise you on your rights and obligations if you decide to consider this. Contact details for the Suffolk Elective Home Education Consultants are:
Central Business Support for all elective Home Education Consultants 01284 758814
Central Business Support for Elective Home Education Suffolk County Council West Suffolk House, Western Way Bury St Edmunds IP33 3YU
www.education-otherwise.net
Education Otherwise is an independent charity which provides support and information for any families whose children are being educated outside school. They can put you in touch with home-educating groups in East Anglia.
0845 478 6345 (helpline)
Direct from their website
www.education-otherwise.net
There is also an NAS information sheet on Home Education.
33 Education Pupil Referral Units (PRUs)
There are thirteen Pupil Referral Units in Suffolk which support pupils from 5 to 16 years of age. Pupil Referral Units (PRU’s) usually work with young people who have been excluded from school, or who are at risk of exclusion. Some also help children and young people who find it difficult to cope in a local school. Staff in the PRU’s support children and young people to develop a range of skills so that they can manage with the demands of school as well as supporting them with their learning. The Local Authority manages the admissions process for PRU and pupils will be referred by their school or Local Authority Officer once permission has been given by the pupil’s parents. PRUs are located in across Suffolk including Ipswich, Sudbury, Bury St Edmunds, Stowmarket and Lowestoft. The Access Unlimited website has more information. See https://www.access-unlimited.co.uk/education/social-inclusion/pupil- referral-units/ This is not a specialist autism service. d. Getting legal advice about education
ACE (Advisory Centre for Education)
0300 0115 142 Monday – Wednesday 10.00am to 1.00pm Term time only
72 Durnsford Road, London N11 2EJ
www.ace-ed.org.uk
This is a national charity, based in London, providing independent advice to parents/carers of children in state-funded schools who are experiencing difficulties such as bullying, SEN, admissions to, and exclusions from, school. It is not a specialist autism service.
34 Education
Coram Children’s Legal Centre
08088 020 008 Monday to Friday 8.00am – 8.00pm
Coram Children's Legal Centre, Riverside Office Centre Century House North, North Station Road, Colchester, CO1 1RE
www.childrenslegalcentre.com (lots of leaflets which you can download free of charge)
A national charity, based at the University of Essex, concerned with law and policy affecting children and young people, including education law. It is not a specialist autism service.
IPSEA
0800 018 4016 (general advice line) 0845 602 9579 (tribunal help line) SEE WEBSITE FOR ADVICE LINE OPENING TIMES
Cannot respond to queries by post. Please contact through their helplines
Cannot respond to queries by email. Please contact through their helplines
www.ipsea.org.uk
A national charity, based in Saffron Walden, offering free independent advice to parents of children with special educational needs. All their advice is given by trained volunteers. This is not a specialist autism service.
35 Education e. Other education services
National Autistic Society education services
The NAS runs seven autism-specific schools (see above). It also runs an education advice line provided by volunteers who offer advice over the phone.
0845 070 4102
The NAS produces many information sheets about education and these can be printed from the website or requested from the Autism helpline.
0808 800 4102
Autism helpline, National Autistic Society, 393 City Road, London, EC1V 1NG
You can find these on the NAS website by locating the A-Z grid of topics on the home page and clicking on the first letter of the title of the information sheet you are interested in.
School transport
0845 606 6173 (Customer Service Centre)
www.suffolk.gov.uk
Free transport is provided by Suffolk County Council for children who: are under 8 years of age and live two miles or more from their catchment school;
36 Education or are between 8 and 16 years of age and live three miles or more from their catchment school (or from the school the County Council has offered if the catchment school is full); or aged between 8 and 11 years, from low income families, who live more than 2 but under 3 miles from their catchment or nearest school; or aged 11 to 16, from low income families, who live more than 2 miles but less than 6 miles from their 3 nearest schools. Free transport may be provided for students at special schools and for other students who have a learning disability, however far they live from school. If you feel that there is a compelling reason why your child needs additional support with transport to school, have a look at the County Council Travel Policy for Children and Young People who need special arrangements.
Contact a Family SEN National Advice Service
helpline 0808 808 3555
Post a query on Facebook or Twitter, or email [email protected]
www.cafamily.org.uk
This service helps families whose child may have special educational needs. They are able to provide advice and information on any aspect of a child’s education. This is not an autism-specific service.
37 Health 4. Health Autism Diagnostic Service for Suffolk
Offer pre-diagnostic discussion and counselling for people who may be on the autistic spectrum but do not have a diagnosis. Provide autism diagnosis using a multi-disciplinary approach and following NICE guidelines. Provide post-diagnostic counselling and signposting for people who have been diagnosed with autism and their families. Accept referrals for ages 11 or over. There is no upper age limit. Referral is through your GP.
01473329400 General enquiries 0300 123 1334 Suffolk Access and Assessment Team (for professionals only).
http://www.nsft.nhs.uk/Our-services/Pages/Autism-Diagnostic-Service-Suffolk- .aspx
Mental Health Services for Children & Young People in Suffolk
The Access and Assessment team is now the single point of access for mental health services in Suffolk. This team can be contacted on 0300 123 1334. They provide mental health services to children and young people. There are three CAMHs teams in Suffolk: Ipswich, Bury St Edmunds and Lowestoft. Referral is usually by your GP or paediatrician, with your permission. See http://www.smhp.nhs.uk/youngpeople/ 38 Health
Child Development Centres (CDCs)
Pre-school children may be assessed by a team of professionals based at your local CDC. They may make a diagnosis and advise on how best to manage your child’s condition. Children can be referred to them by hospital and community paediatricians. There are two CDCs in Suffolk: Bury St Edmunds and Ipswich (which also has a Unit in Stowmarket). Assessments of Suffolk pre-school children living in the NHS Waveney & Gt Yarmouth area are carried out by the James Paget University Hospital outreach clinic.
Community Nursing Team
This is a team of specialist nurses and healthcare workers who support children and young people with severe learning disabilities and complex needs. They can give you information on your child’s disability and tell you how to get in touch with other services. Learning Disability Nurses can give you advice on communication, sensory needs, eating, sleeping, toileting, emotional problems, and challenging behaviours. Referral is through any health professional, with your permission, if you live in East Suffolk or Waveney. If you live in the West, you should ask your paediatrician to refer your child.
Community Paediatricians
These are doctors who specialise in working with babies and children. They can make diagnoses and answer questions you may have about your child’s condition.
39 Health You will usually see paediatricians in clinics, Child Development Centres or health centres. With your consent, schools and GPs can refer children to paediatricians.
Dentists
You can register your child with an NHS or private dentist. You can find a local NHS dentist on the NHS Choices website (www.nhs.uk) - the service finder is on the home page. If you live in the Waveney area, the website is http://www.phi.gywpct.nhs.uk/ and the phone number to call is 01502 719533 If your child needs extra time, care or special features to receive proper dental treatment, you can ask your dentist or doctor for a referral to the Community Dental Service. The Community Dental Service may be able to visit you at home. Children at special schools may be seen at school by the Community Dental Service. If your child finds going to the dentist difficult, you may find the NAS Fact Sheet called Dentist: preparing for a visit helpful. You can download it from the website or send for it by post. You may also like to phone us at Autism Suffolk for advice, or borrow one of our books on this subject.
GPs
Everyone is entitled to register with a GP. You often need a referral from your GP to reach other NHS services. As GPs act as ‘gate-keepers’ to other services, it is important to have a GP who is on the same wave-length as you. If you want to change yours, you do not have to give a reason - just let them know you are leaving and contact another Practice to register with them instead. Contact through NHS Choices at www.nhs.uk
40 Health Health Visitors and Specialist Health Visitors
Health Visitors are qualified nurses with specialised training in child health, health promotion and health education. Every family with children under five years has a named Health Visitor. You can contact your Health Visitor through your GP or health clinic. There are also Health Visitors based at East and West Suffolk Child Development Centres who can advise and support families after a diagnosis of autism. There is no specialist Health Visitor for autism in the NHS Great Yarmouth and Waveney area.
Irlen East
07745 333314
www.irleneast.com
This is a private clinic specialising in diagnosing and managing visual perception problems.
National Autistic Society health services
The NAS produces information sheets about health and these can be printed from the website or ordered from the helpline.
0808 800 4104 Monday to Friday 10.00am-4.00pm
Autism helpline, National Autistic Society, 393 City Road, London, EC1V 1NG
You can find these on the NAS website by locating the A-Z grid of topics on the home page and clicking on the first letter of the title of the information sheet you 41 Health are interested in.
Occupational Therapists (OTs)
Can assess and advise on your child’s sensory needs and motor skills. Referral is through your GP or paediatrician, with your permission. Provision in Suffolk is variable and depends on the age of your child.
Patient Advice and Liaison Service (PALS)
A free confidential information service. They can tell you what NHS services are available and how to contact them. They can also tell you how to make a complaint.
NHS Suffolk Norfolk & Suffolk NHS Trust Partnership
0800 389 6819 Norfolk 01603 421421 (covers non-hospital health care for most of Suffolk) Suffolk 0300 123 1334
PALS Office, PALS Office, Hellesdon Rushbrook House,, Paper Hospital, Drayton High Mill Lane, Bramford, Road, Norwich NR6 5BE Ipswich, IP8 4DW
[email protected] www.nsft.uk
www.suffolk.nhs.uk
Physiotherapists
Physiotherapists assess and treat difficulties with movement, posture and balance. 42 Health Provision in Suffolk is variable and depends on the age of your child. Referral is through your GP or paediatrician, with your permission.
Primary Mental Health Care Workers
Part of the Child and Adolescent Mental Health teams. You may be given an appointment to meet them, or they may work with the professional who referred you to give them some extra ideas about ways to help your family.
School Nurses
School Nurses provide support for children's medical needs. They may be able to refer you to other health services. You can contact School Nurses through your child’s school.
Speech and Language Therapists (SALTs)
SALTs work with children and their families to improve all aspects of communication. This may mean working to improve a child’s speech and language, but could also include things like improving eye contact, understanding gestures and learning how to hold a two-way conversation. Some children with autism find it helpful to use signing, symbols or pictures (eg, PECS), rather than relying just on speech. Provision in Suffolk is variable and depends on the age of your child. You can ask a health or education professional to refer your child.
4YP (Suffolk Young People’s Health Project)
01473 252607
14 Lower Brook Street, Ipswich, IP4 1AP 43 Health
www.4yp.org.uk
Free, confidential and friendly counselling from accredited counsellors for 12 - 25 year olds. This is not a specialist autism service.
44 Benefits
5. Benefits and other financial help a. Benefits to which parent/carers may be entitled
Disability Living Allowance
Disability Living Allowance (DLA) is the benefit that helps with the extra costs you may face as a result of your child’s autism. From April 2013, DLA will be replaced by a Personal Independence Payment (PIP) for people of working age. As yet, there are no plans to extend PIP to children under 16. The new £500 a week cap on welfare benefits coming in from 2013 will not include DLA payments. DLA helps with your child’s personal care and/or to help them get around. It is usually paid every four weeks. Many parents have successfully claimed DLA because: their autistic child needs help with things like washing, dressing or going to the toilet; needs someone to keep an eye on them during the day; needs someone to keep an eye on them at night; cannot get around outdoors without supervision, and so on. It can mean you qualify for more Income Support, Housing Benefit, Council Tax Benefit or Tax Credits, if you are eligible for these. It is tax- free and is paid however much other money you have coming in. It could also open the door to other money-saving concessions, such as the Blue Badge, a bus pass, or entrance to swimming sessions, for example. The DLA claim form is very tricky indeed to fill in. How you word your case is vital, as the person who assesses your application is unlikely to have detailed knowledge of autism spectrum disorders. It can be very disheartening to do the claim on your own. You will need to describe your child’s needs on a typical day but maybe include a diary to show that actually things can be better or much worse day to day. Our best advice is to get expert help with this from one of the disability advice services. Our Family Support Workers at Autism Suffolk do not give detailed help with DLA claims because it is such a specialised area. DLA comes in two parts: the care component and the mobility component. The care component has three rates: high, middle and low. The mobility 45 Benefits
component has two rates: high and low. You can claim either or both components. Care can be awarded from birth but the mobility allowance can only be awarded from the age of three. Call the Benefit Enquiry Line on 0345 712 3456 or online at [email protected] They can arrange for someone to help you fill out the form if required. The person you speak to may need to arrange for someone to phone you back. The Benefit Enquiry Line is open 8.00 a.m. to 6.00 p.m. Monday to Friday. If you request a form from the Benefit Enquiry Line, the date of request will be treated as your date of claim from which Disability Living Allowance can be paid, as long as the form you receive is returned within six weeks of that date. If you delay making a claim, you may lose out on benefit. The person taking your call will not have your personal details but will be able to give you general advice. This advice must not be taken as a decision about your claim. If you do want to make the claim on your own, there is good advice on these websites: o NAS (www.nas.org.uk), o Cerebra (www.cerebra.org.uk), and o Contact a Family (www.cafamily.org.uk). If you have done the help! Programme, there are also detailed instructions in your Parent Manual.
Carer’s Allowance
0345 608 4321 (Benefit Enquiry Line)
Contact your Benefit Office or Jobcentre Plus
46 Benefits
www.direct.gov.uk
This is a benefit for carers who spend at least 35 hours per week caring for a person who gets DLA at the middle or high rate for personal care. But … o It may be taxable and it may affect other benefits and allowances you receive. o You won’t get it if you earn over a certain amount each week, receive some other benefits or are a full-time student. Contact a welfare benefits specialist (see below) to find out which combination of benefits is best for you to claim.
Child Tax Credit
0345 300 3909 (Tax Credit helpline) Monday to Friday 8 a.m. - 8 p.m. and Saturday 8 a.m. - 4 p.m.
Depending on your income, you can claim extra Child Tax Credit if you receive DLA for your child. The amount you get depends on other money you have coming in. You should contact a welfare benefits specialist to find out which combination of benefits is best for you to claim.
47 Benefits b. Organisations which can help you claim
DirectGov and the Benefits Enquiries
www.direct.gov.uk
The DirectGov website contains up-to-date information about all welfare benefits. Their Benefits Enquiry Line gives general advice on benefits. Specific enquiry line telephone numbers can be accessed via the website You can apply online for benefits from the DirectGov website - on the Home Page, click on the links to the section on Money, Tax and Benefits. (Online applications cannot be made using MACs.) Enquiries relating to any specific benefit claims should be directed to the office dealing with your claim. Apply through the phone enquiry line. For DLA, your claim will be backdated to the date you phoned, not the date you submitted your form. You have six weeks to fill in the form. It is always a good idea to get specialist advice to help you make any claim.
National Autistic Society benefits service
0808 800 4104 (Autism helpline) (Monday - Friday, 10 a.m. - 4 p.m.)
Autism helpline, National Autistic Society, 393 City Road, London, EC1V 1NG
You can find these on the NAS website by locating the A-Z grid of topics on the home page and clicking on the first letter of the title of the information sheet you are interested in.
48 Benefits
Personalised information and support The NAS runs a specialist welfare rights service. You can contact it for personal advice and support, including benefit appeals. General information about benefits To order an NAS Benefits Information Pack, text your name, address and the age of your child to 07903 200 200 or phone the NAS helpline on 0808 800 4104. General information about benefits can also be found on the NAS website at www.autism.org.uk/benefits. The NAS also produces various information sheets which can be printed from the website or request them from the helpline.
Disability Advice Services in Suffolk
Free and confidential services to anyone with a query or problem relating to a disability.
Ipswich Disabled Advice Disability Advice Service East Bureau (DAB) Suffolk (DAS
01473 217313 01394 387070
19 Tower Street, Ipswich, IP1 Unit 14, The Square, Martlesham 3BE Heath, Ipswich IP5 3SL
[email protected] info@daseastsuffolk
www.ipswichdab.org.uk www.daseastsuffolk.plus.com
49 Benefits
DIAL Lowestoft and Waveney Avenues East
01502 511333 01473 836777
[email protected] Unit 12 Hill View Business Park, Claydon, Ipswich IP6 0AJ
161 Rotterdam Road, [email protected] Lowestoft, NR32 2EZ
www.dialnet.f2s.com www.avenuesgroup.org.uk
Citizens’ Advice Bureaux
CABs give free, confidential advice on most subjects, from debt, benefits, housing and employment, to law, immigration and discrimination. They are independent and give advice in an unbiased way. The main offices in Suffolk are:
Beccles CAB Brandon CAB
01502 717715 01842 811511
12 New Market, Beccles, NR34 9a Market Hill, Brandon, Suffolk 9HB IP27 0AA
[email protected] [email protected]
www.nesuffolkcab.co.uk Citizensadvice.org.uk
50 Benefits
Bungay CAB Bury St Edmunds CAB
01986 895827 01284 753675
8 Chaucer Street, Bungay, Risbygate Centre, 90 Risbygate NR35 1DT Street, Bury St Edmunds, IP33 3AA [email protected]
www.nesuffolkcab.co.uk www.burystedmundscab.org.uk
Diss, Thetford & District CAB Felixstowe CAB
01379 651333 01394 275958
Shelfanger Road, Diss, IP22 2 - 6 Orwell Road, Felixstowe, 4EH IP11 7HD [email protected]
www.dissandthetfordcab.info www.felixstowecab.org.uk
Halesworth CAB Haverhill CAB
01502 525855 01440 762194
Halesworth Volunteer Centre, Lower Downs Slade, Haverhill, CB9 Waveney Local Office, London 9HB Road, Halesworth, IP19 8LW [email protected]
www.nesuffolkcab.co.uk www.citizensadvice.org.uk 51 Benefits
Ipswich CAB Leiston, Sax & District CAB
01473 219777 01728 832193
19 Tower Street, Ipswich, IP1 Colonial House, Station Road. 3BE Leiston, IP16 4JD
www.ipswichcab.org.uk www.leistoncab.org.uk
Lowestoft CAB Mildenhall CAB
01502 518510 01638 712 094
36 Gordon Road, Lowestoft, Willow House, 40 St Andrews St, NR32 1NL Mildenhall, IP28 7HB [email protected] [email protected]
www.nesuffolkcab.co.uk
Newmarket CAB Stowmarket CAB
01638 665999 01449 676060
Foley Gate, Wellington Street, 5 Milton Road South, Newmarket, CB8 0HY Stowmarket, IP14 1EZ [email protected]
www.midsuffolkcab.org.uk
52 Benefits
Sudbury CAB
01787 374671
Belle Vue, Newton Road, Sudbury, CO10 2RG
www.onesuffolk.co.uk/SudburyCab
Contact a Family
National Suffolk Rachel Hill, Senior Family Worker National helpline: 0808 808 3555 01473 614452
Liz Boyle, Parent Rep. 07508 279791 209 - 211 City Road, London, ECIV 1JN
[email protected] [email protected]
www.cafamily.org.uk
This is a national charity which provides support, advice and information for families with disabled children (0 - 19 years), no matter what their condition or disability. In the East of England, the main focus of the service is to maximize income for families by helping them claim welfare benefits and other financial entitlements. Their national helpline, deals with general enquiries and also has specialist advisors to help you check your welfare benefits. 53 Benefits
They have Special Educational Needs advisory service. Contact a Family has an online service which is a one stop shop for benefits advice and money saving tips. Go to their main web-address and click through to Cash Counts.
Gateopener
01638 510463
20 Hampstead Avenue, Bury St Edmunds, Suffolk IP28 7AS
www.gateopener.org.uk/
Provide free disability information to people living in Suffolk and East Cambridgeshire. They also have a computer programme which you can use to find grant- giving charitable trusts and foundations.
c. Other financial help
AJS Legacy
01449 675779 (Jayne and Martin Jones) 079363 68694 (Jayne Jones)
A local charity who will help fund small items of equipment for young people with additional needs in Stowmarket and surrounding areas.
54 Benefits
Family Fund
01904 621115
4 Alpha Court, Monks Cross Drive, York, YO32 9WN
www.familyfund.org.uk and www.familyfundextra.org.uk
A national charity which gives grants to families whose children have complex additional needs. Their age limit is 17 years. Their grants are intended to ‘help ease the additional pressures families face’. At Autism Suffolk, we know families who have had grants towards washing machines, fridges and holidays. You will need to supply them with details of your family income. Click on ‘Extra Savings for Families’ on their website to find out about offers available to families with children with disabilities.
Direct payments and Suffolk Independent Living
01473 603876
Unit 7, IP-City Centre, 1 Bath Street, Ipswich, IP2 8SD
www.suffolk-independent-living.org.uk
If you have an assessment from Suffolk County Council and they decide you need support as a parent/carer, they may offer you money to arrange to buy this support for yourself. This money is called ‘direct payments’. As an example, you can use direct payments to pay for respite care.
55 Benefits
With direct payments, you are wholly responsible for recruiting, training and employing any carers you take on. Clearly this gives you more flexibility, but also much more responsibility. If you need advice about direct payments, the organisation to contact is Suffolk Independent Living.
Cerebra
0800 328 1159
2nd Floor Offices, The Lyric Buildings King Street, Carmarthen, SA31 1BD
www.cerebra.org.uk
A national charity which aims to help children under 16 with brain-related neurological conditions, including autism spectrum disorders. Their services include (subject to availability): A grant scheme that funds equipment and services that help make life that little bit easier or more fun for your child. Their website gives a list of items they can and cannot fund, or phone them to ask if they can fund what you have in mind. A voucher worth £350 towards the cost of having a solicitor prepare a will and discretionary trust to make provision for your child’s future. Phone or look at website for who can apply for one of these. Their Innovation Centre (CIC) can produce novel and unique equipment for disabled children, either as a one-off for your child or in small batches. Again, phone or look at the website for more details. A Speech and Language Therapy Voucher scheme which will fund up to £500 towards the cost of private speech therapy for children who need it but can't get it. Again, phone or look at the website for more details. A holiday home in Pembrokeshire.
56 Benefits
Sleep service - advice by post or phone from one of Cerebra’s sleep team. Stress helpline for parents and carers - 0800 043 9385. Personal portfolios. Many fact sheets available to download from their website.
Warm Home Discount Scheme
The Warm Home Discount Scheme provides a £120 rebate on your electricity bills. It started in winter 2011/12 and will run for four years. Each electricity supplier has their own eligibility criteria, but it is worth enquiring if you are on a low income and have a child with a disability. The electricity suppliers involved in this scheme are: Atlantic, British Gas, EDF Energy, E.ON, Equipower, Equigas, Manweb, M&S Energy, npower, Sainsbury's Energy, Scottish Gas, Scottish Hydro, ScottishPower, Southern Electric, SSE, Swalec and Utility Warehouse. If your electricity is supplied by one of these companies, you should contact them direct at the beginning of the winter as they only give a limited number of discounts.
57 Leisure
6. Leisure activities a. Support to help your child take part
Activities Unlimited
01473 260026
Unit 7, Hill View Business Park, Old Ipswich Road, Claydon, Ipswich, IP6 0AJ
www.activities-unlimited.co.uk
This is a Suffolk County Council service supported by Scope. Children and young people with additional needs and disabilities can enrol on the AU website and become an AU member. There are a number of benefits, including access to concessionary priced leisure activities, plus information, advice and guidance. Families may also be considered for additional support to enable disabled children and young people to take part in short break opportunities. You can find out more, enrol and book activities for your child via the Activities Unlimited website.
Buddies’ You’ve Got a Friend scheme
0300 303 9076
Unit 1, Apple Tree Barns, Folly Lane, Copdock, Ipswich, Suffolk IP8 3JQ
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http://dimensions-buddies.org
One to one support to help your child attend local social activities without you.
National Autistic Society information sheets
0808 800 4104
Autism helpline, National Autistic Society, 393 City Road, London, EC1V 1NG
You can find these on the NAS website by locating the A-Z grid of topics on the home page and clicking on the first letter of the title of the information sheet you are interested in.
There are some NAS information sheets on holidays (including the Christmas period) and these can be printed from the website.
b. Clubs for children with autism
Let’s Do IT! Autism Family Group
Who for This is group for children with autism, associated conditions and their families. Children with other diagnoses such as ADHD and learning difficulties are also very welcome.
What The Group arranges events, outings and clubs for families where children on the spectrum and their siblings can have fun and enjoy simple days out or other activities, surrounded by people who understand. Activities include a regular Minecraft Club in Needham Market, Football and Trampolining in Ipswich.
Where Various locations see Facebook site for details.
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When Various dates
Contact Facebook link: https://www.facebook.com/groups/Autismfamilygroup/ email: [email protected]
Stowmarket Saturday Club
Who for Fortnightly club for children with an ASD aged 5 - 13 (and a monthly club for children aged 13 to 18)
What The children in the 5 - 13 Clubs can chose from organised and free play activities in the computer and craft rooms, sport hall, games area and lounge. Drinks and snacks are provided. Club is run by qualified, experienced and dedicated staff and volunteers
Where Red Gables, Ipswich Road, Stowmarket, IP14 2HJ
When Every other Saturday from 10 a.m. - 1 p.m.
Contact 07920 714611 (Leah Bowers, Co-ordinator) [email protected] www.stowmarketsaturdayclub.co.uk
Crossroads Ipswich
Who for For Children with additional needs, disability and autism 5-18 years
Where Namsco Funscape, Sproughton Road, Ipswich – 9-18 years bowling The Bridge Primary Campus, Heath Road, Ipswich - Bright Stars & Saturday Club
When Bowling 9-18 yrs with a disability every Tues 7-9 pm Bright Stars 5-12 yrs with additional needs alternate Sats 1.30-4.30 pm Saturday Club 5-12 yrs with autism alternate Sats 9.30 am-12.30 pm
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Contact 01473 730455 (Crossroads) www.crossroads.org.uk/south east suffolk www.sescrossroads.org.uk
Kenny Hill Saturday Club
Who for For 8 - 18 year olds with an ASD
What There are 15 places available each session. Includes a sensory room, art and craft, computers, cookery, puzzles, games, music and gardening
Where Old Barn Cottages Development Centre, Kenny Hill, Nr Mildenhall, IP28 8DS
Cost £10 per day
When See website www.access-unlimited.co.uk
Contact 01473 260026
Felixstowe Saturday Club
Who for For children with an ASD aged 8 - 12
What There are 12 places available each session. Includes art and craft, computers, cookery, puzzles, games, music and other activities.
Opportunities Group premises, Grounds of Felixstowe Academy, Where Maidstone Road, Felixstowe, IP11 9EF
Cost £5 per session
When Saturdays monthly 10.00am – 13.00pm
Contact Autism Suffolk 01473 632700 email [email protected]
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NAS Lowestoft & North Suffolk Branch leisure activities
Who for People with an ASD and their families and corers
What Monthly drop-in sessions in Lowestoft Stay and play sessions Christmas fair/’festivitea’
Where In and around Lowestoft
Cost Varies. Membership is free
Contact 07798 882583 [email protected] www.lowestoftnorthsuffolknas.blogspot.com
NAS West Suffolk Branch leisure activities
Who for People with an ASD and their families and carers
What Groups and drop-ins include: Sudbury Support Group Adult and Carers Drop-in (4th Tuesday of the month) Youth and Carers Drop-in for young people aged 10 - 17 (1st and 3rd Tuesday of the month) Lego Groups (monthly on a Saturday) Autism-friendly activities also include cinema screenings for families, Kite Festival, Summer picnic, Fireworks, Christmas party
Where In and around Bury St Edmunds
Cost Varies. Membership is free
Contact 07795 238778 (branch mobile) [email protected] www.wsnas.co.uk
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c. Clubs for children with any disability
Ipswich: Groovy Girls Club
Who for All girls and young women aged 12—25 with additional needs
What Arts, crafts, and social activities
Where Suffolk Young People’s Project (4yp) 14 Lower Brook St, Ipswich, IP1 1AP
When Wednesdays 5.30-7.00pm
Contact 01473 252607 Scarlett – [email protected]
Newmarket: Kidzone Youth Club
Who for All children aged 9 - 18 with additional needs
What Arts, crafts, sports and social activities
When Contact Jan Stiff for more information
Contact 07944 131091 (Jan Stiff)
Saxmundham: Suffolk Coastal Young People’s Project (SCYPPs)
Who for Children with disabilities and additional needs aged from 8 to 18 years
What a) Saturday Club (10 a.m. - 1 p.m.) for children 8 - 13 years offering a range of activities (art and craft activities, playing board games, sports activities, and going for walks) b) A Teenage Opportunity Project (TOPs) 1.30 p.m. - 4.30 p.m. for disabled teenagers aged 14 - 18 years. We provide fun activities and arts and craft activities in the Centre and go bowling, visit sports facilities, restaurants, the theatre and use local transport.
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Where Saxmundham Community Resource Centre, Seaman Road, Saxmundham, IP17 1DZ
Cost Sessions are £10.00
When Contact for information on days and times
Contact 07986 312315 or 01473 260026 – www.syppsclub.org.uk
Saxmundham: PASTEL Saturday Club
Who for Young people (13 - 25 years old) with Learning Disabilities
What Workshops to build confidence, self-esteem, communication, decision making and teamwork skills - and to have fun
Where Fromus Centre, Seaman Avenue, Saxmundham, IP17 1DZ
When First and third Saturday of the month. (09.30 a.m. –.3.30 p.m.)
Contact 01728-604944 (Weekdays 10.30am – 3.30pm.) [email protected]
Buddies School Holiday Clubs
Who for Children with additional needs
What Range of activities such as games, drama, computers, arts, crafts and cooking
Where Ipswich, Bury St Edmunds and Sudbury
When School holidays, including half terms
Contact 0300 303 9076 (Dimensions)
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d. Drama, singing, dance and arts
Eye Arts Club
Who for Children aged 7 - 18 with and without additional needs
What Various projects which include dance, puppetry and filming
Where Dove Hall, Dove Lane, Eye, IP23 7BA
When See web site for details.
Contact 01379 668464 (Liz Waugh McManus) [email protected] http://www.eye-arts-club.org.uk/
Junior Springboard (DanceEast)
Who for People with additional needs (age 11 - 18 years) (No experience necessary)
What Dance
Where Jerwood Dance House, Waterfront, Ipswich, IP4 1DJ
Cost About £4
When See website for details http://www.danceeast.co.uk/
Contact 01473 295230
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e. Sports
Athletics
Orwell Panthers Athletics Club
Who for Suitable for anyone 10 years and over with physical or learning disabilities
What ‘Fun in athletics however able’
Where Northgate Sports Centre, Ipswich
When Wednesdays 6.30 p.m. - 8 p.m.
Contact 01473 259593 (Mitzi Read) www.orwellpanthers.co.uk
Canoeing
Canoe Clubs offer training, equipment hire, and the chance to paddle in pools and on rivers.
Bungay Waveney Valley Canoe Club Bungay Riverside Centre, Bungay, Suffolk, NR35 1BF www.waveneyvalleycanoeclub.org.uk Contact: 01502 713683 / 07800 909803or email : [email protected]
Ipswich Contact them by email [email protected]. Details can be found at www.ipswichcanoeclub.org.uk
Lowestoft Lowestoft and District Canoe Club Colemans Dyke, Nicholas Everitt Park, Oulton Broad, Lowestoft, NR33 9JR Secretary (Suzanne): 07807 061 832
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http://lowestoftcanoeclub.publishpath.com
Sudbury Contact them using the form at www.sudburycanoeclub.org.uk
Woodbridge Deben Canoe Club Deben River Centre, opposite Band Stand www.bcusuffolk.org.uk/debencc [email protected]
Football
If your child gets DLA, you can get cheaper tickets to football matches at Ipswich Town Football Club. They start at £7 and a carer goes in free of charge.
Bury St Edmunds: West Suffolk Tigers
Who for Children of school age with any disability
What Athletics, games and activities
Where Bury Leisure Centre, Beetons Way, IP33 3TT
When 4pm - 5pm Wednesdays in term time
Contact Michelle on 07983 641196 or [email protected]
Bury St Edmunds: football
Who for Children aged 5-15 with additional needs
What Drill and games covering the core skills of football
Where King Edward VI School, Bury
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When Tuesday 6-7pm
Contact 0845 1369 333 (Ipswich Town FC Charitable Trust)
Bury St Edmunds: Sports Saturday Club
Who for All children, and their parents if they want to join in
What Football skills, ball skills, fun and games
Where Tollgate Primary School, Bury St Edmunds
When Saturday mornings
Contact 01284 769625 (Billy Wappett) www.billywappett.com
Haverhill: football
Who for Children aged 5-15 with additional needs
What Drill and games covering the core skills of football
Where Samuel Ward Academy, Haverhill
When Mondays 5-6pm
Contact 0845 1369 333 (Ipswich Town FC Charitable Trust)
Ipswich: football
Who for Children aged 5-15 with additional needs
68 Leisure
What Drill and games covering the core skills of football
Where Ipswich Town Football Club, Portman Road, Ipswich
When Wednesday evening 6 p.m. - 7 p.m.
Contact 0845 1369 333 (Ipswich Town FC Charitable Trust)
Horse riding
Riding for the Disabled
Who for All people with a disability
What Riding for enjoyment and therapeutic benefit
Where Various locations across Suffolk
Contact Hollesley 0845 241 5356, Ipswich 0845 241 5371 Shelley Centre 0845 450 6919
Sailing
Woolverstone Sailing Project
Who for People with disabilities
What Learning to sail
Where From May - September, there is an open youth session every Thursday evening after school at Alton Water Reservoir near Tattingstone
Contact Ian Hammond on 07507 906719 [email protected]
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East Anglian Sailing Trust (EAST)
Who for Mobile disabled people over 10 years of age. Experienced sailors and beginners welcome
What Learning to sail
Where EAST Waterside Community Centre, Suffolk Yacht Harbour (Levington Marina) near Ipswich
Cost £25 yearly for adults, £5 for chilidren. Come for a taster session before you join
When April - end of September. Tuesday and Wednesday evenings and some Saturdays and Sundays
Contact Suffolk Yacht Harbour, Levington, Ipswich, IP10 0LN 0333 088 3278 www.e-a-s-t.org.uk
Martial Arts
Some children with an ASD really enjoy and benefit from martial arts. In particular, tae kwon do and karate are popular and do not involve a great deal of bodily contact. Look on the Internet or ask at your library or sports centre for clubs in your area.
Swimming
There are three Swim Clubs in Ipswich for people with a disability (The Bridge Secondary Campus, Thomas Wolsey School and Fore Street). Phone Elizabeth Christian on 0790 6652511 to find out more, or email her at [email protected] Prices at leisure pools vary. Some operate schemes where carers of children with additional needs can swim with their child free of charge. Phone for details. 70 Leisure
Bungay Lowestoft 01986 895014 01502 569116
Bury St Edmunds Mildenhall 01284 753496 01638 712515
Felixstowe Newmarket 01394 670411 01638 782500
Hadleigh Stowmarket 01473 823470 01449 674980
Haverhill Stradbroke 01440 702548 01379 384376
Ipswich (Crown Pools) Sudbury 01473 433655 01787 375656
Leiston Woodbridge 01728 830364 01394 384763 f. Other activities
Astronomy
Orwell Astronomical Society (Ipswich) (OASI)
Who for Anyone interested in astronomy
What You can visit the Observatory on Open Days and use the telescopes to see the night sky
Where Orwell Park Observatory, Orwell Park School, Nacton, near Ipswich, IP10 0ER
When Open Days - email the Society for dates
Contact www.oasi.org.uk [email protected]
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Bird watching
This is easily available to everyone. There are lots of places in Suffolk to watch birds, including the world-famous Minsmere Reserve. Your child could also join the Royal Society for the Protection of Birds (RSBP) if they want to find out more about birds. They have a junior section (Wildlife Explorers), a teenage section (RSPB Phoenix) and five local RSPB groups based in Suffolk.
Contact www.rspb.org.uk Eastern England Regional Office 01603 661662 Stalham House 65 Thorpe Road Norwich Norfolk NR1 1UD
Chess
Some children with an ASD really enjoy the challenge of chess. It can also be played on the internet.
Bury Knights Junior Chess Club
Who for All children aged 5 - 14
What Chess club
Where Horringer Court Middle School, Bury St Edmunds
When Friday evenings 6 p.m. - 8 p.m.
Contact 01284 811555 (Bob Jones) www.buryknightschess.org.uk
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Cinema Cards
Who for Anyone accompanying your child to the cinema if your child receives DLA
What Free entrance for anyone accompanying your child to the cinema
Where Anywhere in UK
Cost £6.00 a year
Contact 0845 123 1292 The Card Network, Network House, St Ives Way, Sandycroft, CH5 2QS www.ceacard.co.uk
Games Workshop Hobby Centres
Who for Children 12 years of age or over who might enjoy playing strategy games set in fantasy worlds
What Play Warhammer and The lord of The Rings in Games Workshop Stores. Staff will help youngsters with their first games and also show them how to start painting their army figures
Where Ipswich - 63 Westgate Street 01473 210031 Colchester - 2 Short Wyre Street 01206 767279 Norwich - 12/14 Exchange Street 01603 767656
Cost Depends on how much you buy
When Call into a shop for your first visits to speak to store staff about club times - different age groups and skill levels can come into the shops to play on different days
Theme Parks
(eg, Legoland, Alton Towers, Disneyland Paris - investigate their Easy Access and Fast Access passes) 73 Leisure
Some theme parks offer discounts for carers and for children with additional needs. Some also run schemes whereby children on the autism spectrum who find waiting difficult can by-pass long queues. Parents have told us it is best to book direct with the attraction rather than going through an agent, stating right from the outset that you child is on the autism spectrum.
Tower of London and Hampton Court
To help you plan your visits, you can download guides to these historic royal palaces from www.hrp.org.uk (follow the links: Plan your visit, Accessibility). Both guides are autism-specific and were compiled with the help of the NAS.
Sea Cadets
Who for All children (boys and girls) aged 12 - 18 (with Junior sections for 10 - 12 year olds)
What Sailing, power-boating, cooking, swimming, tours around naval ships.
Where Suffolk Units are in Beccles, Bury, Felixstowe, Ipswich, Lowestoft, Mildenhall, Red Lodge, http://seacadets.ms-sc.org (Note - no www. in web address) Contact Beccles 01502 711858 Bury St Edmunds 01284 750352 Felixstowe 01394 285525 Ipswich 01473 259508 Lowestoft 01502 585639 Mildenhall 01638 717292 Red Lodge www.sea-cadets.org/redlodge
74 Transport and travel
7. Respite and befriending Befriending Scheme (National Autistic Society)
02920 629314 or 07920295911
www.nas.org.uk
The NAS recruits and trains volunteers to support people with an ASD and their families. The volunteers are not experts, but they are friendly people who are willing to learn and who would like to do something to help. Your family can apply to be matched with a local volunteer who could regularly spend some time with your child or your family as a whole. There isn’t always a volunteer available locally in a rural county like Suffolk. However, you could apply for e-befriending. You would be matched with a volunteer from anywhere in the UK and have contact with them via e-mail.
Buddies - Tots
0845 160 2299
Unit 1, Apple Tree Barns, Folly Lane, Copdock, Ipswich, Suffolk IP8 3JQ
http://dimensions-buddies.org
One to one support to help your child (aged 3 - 8) at hours to suit you so that you can focus on your other children or carry out tasks you don’t usually have time for.
75 Transport and travel
Buddies’ You’ve Got a Friend scheme
0300 303 9076
Apple Tree Barns, Folly Lane, Copdock, Ipswich, Suffolk IP8 3JQ
http://www.dimensions-uk.org/dimensions-buddies/buddies-tots/
One to one support to help your child attend local social activities without you. Crossroads Care
You can arrange for a trained family care support worker from Crossroads to come in and look after your child for a few hours, daytime or evening. In some areas, a night-time service (sleeping or waking) may also be available. Families can contact Crossroads Care directly. Free respite care is very limited. Crossroads Care East Anglia
01473 730455
4 Constable Court, The Street, Belstead, Ipswich, IP8 3LY
www.crossroads.org.uk/south east suffolk www.sescrossroads.org.uk
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Suffolk Link Scheme
0800 328 2148 or via Customer First or through your child’s Social Worker
www.suffolk.gov.uk
Respite scheme, run by Suffolk County Council who recruit volunteer approved foster carers to provide short breaks for parents/carers. The breaks can range from a couple of hours a week to a weekend once a month and care is provided in the foster carer’s home. Children who are accepted onto this scheme are matched with a suitable volunteer.
Direct payments and Suffolk Independent Living
01473 603876
Unit 7, IP-City Centre, 1 Bath Street, Ipswich, IP2 8SD
http://www.suffolkindependentliving.org.uk/directpayments.php
If you have an assessment from Suffolk County Council and they decide you need support as a parent/carer, they may offer you money to arrange to buy this support for yourself. This money is called ‘direct payments’. As an example, you can use direct payments to pay for respite care. With direct payments, you are wholly responsible for recruiting, training and employing any carers you take on. Clearly this gives you more flexibility, but also much more responsibility. If you need advice about direct payments, the organisation to contact is Suffolk Independent Living.
77 Transport and travel
8. Transport and travel
Air travel
Manchester Airport has a unique information guide to help passengers travelling with children with an ASD. This free guide is called 'Airport Awareness: travel advice for parents and carers of children on the autistic spectrum'. It uses pictures to show what to expect on a journey through Manchester Airport, starting from arriving, to checking-in, to going through security and returning home. The booklet is free to download from the Manchester Airport website. Go to www.manchesterairport.co.uk and search for ‘autism’. If you advise your travel agent that your child has an ASD, you can often avoid having to queue at airports. Blue Badge scheme
0808 800 4005 (Customer First) Monday to Friday 8 a.m. - 6.45 p.m.
Customer First, PO Box 771, Needham Market, Ipswich, Suffolk, IP6 8WB
www.suffolk.gov.uk
The Disabled Persons Parking Badge Scheme allows people with disabilities to park in disabled bays and on some single and double yellow lines, with fewer restrictions on parking time limits. Badge holders are also exempt from paying the London congestion charge. You can apply for one from Suffolk County Council if your child is aged two upwards and meets their criteria: 1. If your child receives the higher rate mobility component of Disability Living Allowance (DLA) then entitlement to a Blue Badge should be automatic. 2. If your child receives the lower rate of the mobility component of DLA, or no mobility award at all, you can still apply, but you need to explain carefully to the Council how autism can affect your child when you are out and about with them. This can be difficult as Councils tend to focus on physical disabilities when it comes to granting Blue Badges. 78 Transport and travel
You may find it helpful in your application to mention if the following sorts of things happen frequently: o Your child refuses to walk, maybe because of noises on the street, crowds, fear of dogs, etc. o Your child does not always recognise what socially acceptable or safe behavior is - for example, they may sit down in the middle of a busy road. o Your child's road safety skills are not comparable with other children of their age - they may put their own or other people’s safety at risk. o Your child runs off if they feel anxious. o You use parking meters or park illegally because you have to travel by car and need to park close to your destination. Have you ever received parking tickets because of this? o Your child becomes anxious or distressed if you visit an unfamiliar area. Maybe a blue badge would help by allowing you to park close to your destination, reducing the time you have to spend walking when your child may become upset. o Your child misses out on social/leisure activities they would normally enjoy because you can't park nearby. If you would like help to apply for blue parking badge for your child, then speak to the Citizens’ Advice Bureau, the NAS helpline or your local disability advice centre. There is an NAS information sheet on the Blue Badge which can be printed from the NAS website or ordered from the Autism helpline.
0808 800 4104
Autism helpline, National Autistic Society, 393 City Road, London, EC1V 1NG
You can find these on the NAS website by locating the A-Z grid of topics on the home page and clicking on the first letter of the title of the information sheet you are interested in.
79 Transport and travel
Bus passes
0845 600 0659
www.suffolkonboard.com
Concessionary bus passes are available to people of any age with an eligible disability. This is a national scheme and bus pass holders can use them for travel on local buses anywhere in England. These passes are free and entitle the holders to free off-peak travel (between 9.30 a.m. and 11 p.m. and all day weekends and bank holidays). To apply for a free bus pass for your child, pick up an application form at one of the main Suffolk County Council offices or at a library. Or you can phone on the freephone number above. You will also need to submit a recent passport sized photo of your child and evidence of your child’s autism (eg, DLA award letter). Once you have a pass, it can be renewed every couple of years.
Disabled Person’s Railcard
You can apply for a Disabled Person’s Rail Card for your child if they are 5 - 15 and receive DLA at either: o the higher or lower rate for mobility; or o the higher or middle rate for help with personal care. The cost is £20 for a One Year Railcard; £54 for a Three Year Railcard. This enables them to pay the usual child fare but also gives 1/3 off most fares to one adult travelling with them. You will also get this discount on London Zones 1-6 Off-Peak Day Travelcards, Anytime Day Travelcards (when bought as part of your ticket from outside London Zones 1-9) and some Oyster Off-Peak pay-as-you- go fares.
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How to apply Download an application form from the website (see below) or you can find it in the leaflet ‘Rail Travel Made Easy’ from railway stations. Post your completed form, together with payment and a copy of your DLA award letter (address below).
0845 605 0525
Disabled Persons Railcard Office, PO Box 11631, Laurencekirk, AB30 9AA
www.disabledpersons-railcard.co.uk (to download an application form)
London congestion charge
Anyone who holds a Blue Badge is eligible for a 100% discount from congestion charging. You can register up to two vehicles that you would normally use to travel in to central London. To be eligible for the discount, you must complete a registration form and be issued with a discount registration approval letter. This can be useful for appointments in central London hospitals. More details are available on www.tfl.gov.uk/roadusers/congestioncharging/6736.aspx You pay £10 for the discount.
RAC family membership
RAC family membership covers you and up to four other named members of your household. All the named people you want covered under the policy must live at the registered address listed on the policy. It covers the people named, not the vehicles they are travelling in at the time they need help. Include your autistic child in your membership so that if they are out with
81 Transport and travel friends or other family and the car they are travelling in breaks down, the RAC can be called for assistance. The RAC offer ‘priority rescue for anyone in a vulnerable situation’ as part of the membership deal.
School transport
0845 606 6173 (Customer Service Centre) [email protected]
http://www.suffolkonboard.com/home-to-school-transport
Free transport is provided by Suffolk County Council for children who are: o under 8 years of age and live two miles or more from their catchment school; o or between 8 years and 16 years of age and live three miles or more from their catchment school (or from the school the County Council has offered them if the catchment school is full); o or aged between 8 and 11 years, from low income families, who live more than 2 but under 3 miles from their catchment or nearest school; o or aged 11 to 16, from low income families, who live more than 2 miles but less than 6 miles from their 3 nearest schools. Free transport may be provided for students at special schools and for other students who have a learning disability, however far they live from school. If you feel that there is a compelling reason why your child needs additional support with transport to school, have a look at the County Council Travel Policy for Children and Young People who need special arrangements.
82 Transport and travel
Seatbelts and harnesses
Up to the age of 12, or up to a height of 135cm (4'5") tall, children have to sit in the correct child restraint or booster seat when travelling in a car, van or any other vehicle where seat belts are fitted. Once your child is 12 years old or 135 cm tall, they can use an adult seat belt. They don't need a child's car seat. If your child refuses to wear a seatbelt or continually escapes from it, you could consider using disabled person's seat belts or child restraints. The only way a child can be exempt from wearing a child restraint or seat belt is if a doctor issues an exemption certificate on medical grounds. For further details, visit the Department for Transport website at www.dft.gov.uk/think
NAS specialist travel insurance
01603 828201 (please say you found their number through the NAS)
The National Autistic Society, in partnership with insurance service, Unique, offers a specialist travel insurance policy for: o people affected by autism and other pre-existing medical conditions, disabilities and allergies; o families and friends travelling with them. NAS members receive a 10% discount on policies. Please note that, as elsewhere in this booklet, inclusion does not imply recommendation. You may find other travel insurance policies elsewhere which are equally or more suitable to your family’s needs.
83 Other services 9. Other services and organisations a. Advocacy
Advocacy services support people to have their say and get their views heard. VoiceAbility Suffolk (Total Voice)
01473 857 631
www.totalvoicesuffolk.org
Total Voice Suffolk is an advocacy service for people who are over 18 and have Learning Disabilities, Acquired Brain Injuries, Physical and Sensory Impairments, Autistic Spectrum Disorders, Dementia Or who are family carers or older people.
Young People in Suffolk advocacy is also provided with the Participation and involvement projects which will empower young people to have a stronger voice, to express their needs and make decisions by having choice and control over their lives. This is not a specialist autism service.
b. Your legal rights at work
There is legal protection for working carers but it is always best to talk to your employer about your concerns and commitments. You and your employer might want to consider some of the ideas mentioned in this section: Flexible working If you have worked for your employer for at least 26 weeks, and your child with autism is under 18, you have the right to request flexible working arrangements (although this will not necessarily be granted). You can make just one request per year and this must be in writing. There are many different ways of working flexibly such as: 84 Other services Working from home. Having flexible starting or finishing times. Working your normal number of hours in a shorter time (eg, five days working time in four days). Job-sharing or part-time working. Flexible holidays to fit in with alternative care arrangements. Working only in term-time.
Parental leave If you’ve worked for your employer for at least a year, you have a legal right to take reasonable time off work to deal with emergencies relating to the person you care for - for example, if there is a breakdown in care arrangements, or your child is involved in an incident during school hours. If your child with autism is under five, you can take up to 13 weeks unpaid leave. If they are over 5 and under 18, you can take up of 18 weeks of unpaid leave. There is also information on your rights at work in the NAS help! manual.
c. Going to church
Oxford Diocese (Church of England) has produced a useful downloadable introduction to welcoming people with autism to church. From their website (www.oxford.anglican.org) follow these links: Social-justice, Disability, Welcoming-those-with-autism-and-asperger-syndrome-in-our- churches-and-communities.html We also have a lending copy in the Autism Suffolk library.
85 Other services d. Bereavement support for your child
National Autistic Society
0808 800 4104 (Monday - Friday, 10 a.m. - 4 p.m.)
Autism helpline, National Autistic Society, 393 City Road, London, EC1V 1NG
www.nas.org.uk
The NAS has an information sheet called Death, bereavement and autism spectrum disorders, which is downloadable from their website or obtainable through the NAS Autism helpline. The Autism helpline also has a list of counsellors who have an understanding of autism spectrum disorders and a few of these can provide bereavement counselling. RD4U (Youth Branch of Cruse)
Helpline on 0808 808 1677 (Monday - Friday, 9:30 a.m. - 5 p.m.
Cruse Bereavement Care, PO Box 800, Richmond, Surrey, TW9 1RG
http://www.rd4u.org.uk/
RD4U is a website designed for young people by young people. It is part of Cruse Bereavement Care's Youth Involvement Project and supports people after the death of someone close. RD4U means the 'road for you' - the main aim of the site is to let you find your own 'road' to dealing with your loss. This is not a specialist autism service.
86 Other services
Child Bereavement Trust
Support and information line is 01494 568900 (Monday to Friday, 9 a.m. - 5 p.m.)
Clare Charity Centre, Wycombe Road, Saunderton, Buckinghamshire, HP14 4BF
www.childbereavement.org.uk
Provides specialised support, information and training to all those affected when a baby or child dies, or when a child is bereaved. This is not a specialist autism service.
Winston’s Wish
08452 03 04 05 (helpline)
3rd Floor, St James's House, St James Square, Cheltenham Gloucestershire, GL50 3PR
www.winstonswish.org.uk
Winston's Wish provides services to bereaved children, young people and their families in the UK. This is not a specialist autism service.
87 Other services e. Other support
RADAR Key
020 7250 8191
Disability Rights UK, Ground Floor, CAN Mezzanine, 49-51 East Rd, London, N1 6AH
https://crm.disabilityrightsuk.org/radar-nks-key
There are about 9000 public toilets around the country for use by people with a disability. They are usually kept locked to stop misuse and damage. The National Key Scheme offers disabled people independent access to these toilets by using a special key which can be bought from the Disability Rights UK
It is called the RADAR scheme because Disability Rights UK was previously called the Royal Association for Disability Right
You can buy a key for £4.50. Details can be found on the website.
Autism Alert Cards
Autism Anglia and Asperger East Anglia both issue credit card sized alert cards which can be carried at all times and displayed if your child finds themselves in a situation where they cannot easily give an explanation about their condition. These cards assist the police and emergency services to identify that they are dealing with someone who has autism. Autism Anglia’s card has been produced in conjunction with Essex Police and Norfolk and Suffolk Constabularies. Proof of diagnosis is required before a card can be issued - for example. a diagnosis letter, a Statement of Special Educational Needs, a letter from a professional, medical report or assessment, etc. Their cards are free but there is a £1.00 fee for replacements. 88 Other services
01206 577678
Autism Anglia Century House Riverside Office Centre North Station Road Colchester Essex CO1 1RE
https://www.autism-anglia.org.uk/
Suffolk Parent Carer Network
07445 716556
www.spcn.org.uk
This is a network of parents and carers of children with additional needs. It works with Social Care, Education, Health, etc. to make sure parents have a voice that is listened to and acted on.
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10. INDEX 4YP (Suffolk Young People’s Community Paediatricians, 39 Health Project), 43 Contact a Family, 18, 53 ACE (Advisory Centre for Contact a Family SEN National Education), 34 Advice Service, 37 Activities Unlimited, 58 Coram Children’s Legal Centre, 35 Air travel, 78 County Inclusive Resource, 28 AJS Legacy, 54 Crossroads Care, 76 Asperger East Anglia, 10 Customer First, 18 Astronomy, 71 Dentists, 40 Autism Alert Cards, 88 Direct payments and Suffolk Autism Anglia, 10 Independent Living, 55, 77 Autism Diagnostic Service for DirectGov and the Benefits Suffolk, 38 Enquiries, 48 Autism Suffolk, 6 Disability Advice Services in Autism-specific schools, 30 Suffolk, 49 Behaviour Support Service, 29 Disability Living Allowance, 45 Bird watching, 72 Disabled Person’s Railcard, 80 Blue Badge scheme, 78 Drama, singing, dance and arts, Buddies - Tots, 75 65 Buddies @ Home, 15 Education, 27 Buddies’ You’ve Got a Friend Education other than at school, 32 scheme, 58, 76 Education Otherwise, 33 Bus passes, 80 Educational Psychology Service Canoeing, 66 (EPS), 30 Carer’s Allowance, 46 Family Fund, 55 Carer’s assessment, 15 First Bases, 32 Carers Direct, 16 Football, 67 Cerebra, 16, 56 Games Workshop Hobby Centres, Chess, 72 73 Child Bereavement Trust, 87 Gateopener, 19, 54 Child Development Centres GPs, 40 (CDCs), 39 Health Visitors and Specialist Child Tax Credit, 47 Health Visitors, 41 Children’s Centres, 17 Home Education, 33 Cinema Cards, 73 Home-Start, 20 Citizens’ Advice Bureaux, 50 Horse riding, 69 Clubs for children with any Individual Education Plans (IEPs), disability, 63 27 Clubs for children with autism, 59 Integrated Services for children, Community Nursing Team, 39 19
90
IPSEA, 35 Pupil Referral Units (PRUs), 34 Irlen East, 41 RAC family membership, 81 Leisure activities, 58 RADAR Key, 88 Lets Do IT! Autism Family Group, RD4U (Youth Branch of Cruse), 86 59 Relate, 24 Martial Arts, 70 Respite and befriending, 75 MENCAP DIRECT, 21 Sailing, 69 NAS Befriending, 7 School Nurses, 43 NAS Branches in Suffolk, 9 School Preference Advisors, 29 NAS EarlyBird Programme, 8 School transport, 36, 82 NAS Information sheets, 8 Sea Cadets, 74 NAS Lowestoft & North Suffolk Sendiass (formerly Parent Branch, 9 Partnership Service), 29 NAS specialist travel insurance, 83 Sibs, 25 NAS West Suffolk Branch, 9 Special Schools, 30 National Autistic Society, 7 Special schools in Suffolk, 30 National Autistic Society (national Speech and Language Therapists services), 7 (SALTs), 43 National Autistic Society benefits Sports, 66 service, 48 Statements and Education, Health National Autistic Society health and Care Plans (ECHP), 27 services, 41 Suffolk Families Information National Autistic Society Service, 26 information sheets, 59 Suffolk Family Carers, 25 Occupational Therapists (OTs), 42 Suffolk Parent Carer Network, 89 Other education services, 36 Suffolk Young Carers, 26 Other financial help, 54 Swimming, 70 Parents’ groups/drop-ins/support Theme Parks, 73 groups - autism specific, 11 tional Autistic Society education Parents’ groups/drop-ins/support services, 36 groups – NOT autism specific, Transport and travel, 78 21 VoiceAbility Suffolk (Total Voice), Patient Advice and Liaison Service 84 (PALS), 42 Warm Home Discount Scheme, 57 Physiotherapists, 42 Winston’s Wish, 87 Primary Mental Health Care Workers, 43
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