Information to help parents
of children with special needs
Introduction
Improving services for children with complex disabilities
It is extremely important for the parents of children with severe or complex needs to be able to access a range of services that will allow them to provide their child with the best possible care. The pursuing perfection steering group has recognised this and commissioned the production of this booklet, which has been prepared by Noreen Walsh, a parent whose child has special needs. This booklet contains detailed information about a range of services, equipment providers, benefits and support groups. The aim is to ensure that parents know what they are entitled to, where they can access advice and support, what services are available to them and where they can obtain equipment to help with the care and support of their child.
We hope you find this booklet useful.
Disability living allowance (DLA)
You can claim disability living allowance for your disabled child. It is not means tested. The benefit has two parts:
1. Help with personal care: This can be awarded at higher, middle or lower rate depending on your child’s needs. You can claim when your child is 3 months or over.
2. Help with getting around: This can be awarded at higher or lower rate. You can claim when your child is 3 years old.
The application forms are very long, but don’t be put off! When filling in the form think of the worst day your child has had, and write about it. If you are awarded a lower or middle rate and you feel your child should have a higher rate do appeal against the decision. If you have difficulty completing the forms a benefits advisor may be able to help. If your child has a terminal illness, you can fill out a separate form and the child can be awarded DLA for life, with no more forms to fill in.
If your claim for DLA is refused, please seek advice about appealing. There may be a simple reason why you have been refused linked to the way in which you completed your claim.
Contact the DLA on 0845 712 3456 or www.dwp.gov.uk
Carers allowance (CA)
If you care for your disabled child more than 35 hours per week you can claim carers allowance. If you work you can earn £87 per week (tax year 2007-2008) after certain expenses and still get carers allowance, This figure is reviewed every year. You can only receive one CA even if you are caring for more than one disabled person.
Contact the carers allowance unit on 01253 85 61 23 or www.dwp.gov.uk
Council tax reduction
If a disabled person needs to use a wheelchair inside a house, or you have a room adapted for a disabled person such as bathroom or kitchen you can apply for a reduction in council tax. You go down one band.
Contact Luton Council tax enquiries on 01582 54 66 06
Child tax credit (CTC)
This is a means tested benefit, but please ensure you tell them you have a disabled child and what rate of DLA your child receives, as you may be entitled to more CTC.
Contact CTC on 0845 300 3900 or www.inlandrevenue.gov.uk
Nappies
Your child is entitled to free nappies from the age of 4. If you are trying to toilet train your child, pull-ups should be provided. However, if your child is toilet trained during the day and only requires nappies at night, these will not be provided free.
Resources
Motability scheme
If your child receives DLA for getting around at higher rate, you can apply for a car through the motabilty scheme. Your child must have been awarded DLA for at least 1 year. You pay a deposit depending on the vehicle you choose, and then the mobility part of DLA is paid direct to motability every four weeks. The vehicle is usually leased over 3 years or hire purchase contract is over 5 years, but this may vary.
Contact motability on 0845 456 4566 or www.motability.co.uk
Adapted vehicles
If your child needs to be transported in a wheelchair, you can get an adapted vehicle, i.e. a van or people carrier that has either a ramp or lift for access and restraints to hold a wheelchair in place. You can get an adapted vehicle through the motability scheme. You can also buy these vehicles new or second-hand. Often they are ex-motability vehicles so they have been well looked after. Some good companies are as follows:
Invatravel Conversions Ltd.
Tel: 01704 50 66 08 or www.invatravel.com Widnes Car Centre Ltd.
Tel: 0151 420 2000 or www.wheelchair-access.co.uk Lewis Reed Group.
Tel: 0845 345 0127 or www.lewisreedgroup.co.uk Gowrings Mobility Ltd.
Tel: 0845 608 8020 or www.gowringsmobility.co.uk Warnerbus Ltd
There are regular mobility shows. There are lots of vehicles to see with various adaptations. Well worth a visit. Visit www.mobilityroadshow.co.uk for more information.
Sometimes Autotrader and Disability Now have second hand adapted vehicles for sale.
www.autotrader.co.uk and www.disabiltynow.org.uk
The Department For Transport has a website which provides advice for disabled and older drivers called MAVIS (Mobility, advice and vehicle information service). It also lists over 40 companies throughout the UK that adapt vehicles to carry a wheelchair. However, the information can be hard to access.
Visit www.dft.gov.uk/access/mavis Click: Mavis Information Service
Click: Contact lists for disabled and older motorists
Click: Converters of vehicles to carry one or more passengers in a wheelchair
Insuring adapted vehicles
There are only a few companies that will insure a vehicle that is adapted to take a wheelchair. They offer benefits such as new-for-old on adaptations if damaged in an accident, an adapted courtesy vehicle, or they give a daily allowance towards a wheelchair taxi if an adapted courtesy vehicle is not available. The following companies will insure adapted vehicles:
KF Garner & Co.
Tel: 01925 633 807 www.mobilityinsure.co.uk Enroute Insurance
Tel: 0800 783 7245 www.enrouteinsurance.co.uk Chartwell Insurance Ltd
Servicing a lift on adapted vehicle
It is recommended that a lift be serviced every 6 months. All servicing and repairs are exempt from VAT. Locally this can be done at:
Warnerbus, Chiltern Avenue, Dunstable (near Wicks) Tel: 01582 47 71 20
Car tax
If your child receives the higher rate mobility component of DLA you can apply for exemption from paying car tax. Contact the DLA for information.
Blue badge scheme
To qualify for Blue Badge, your child must fit one of the following criteria: 1. Be in receipt of the higher rate of the mobility component of the Disability Living Allowance (DLA)
2. Be registered blind
3. Have a vehicle supplied by DSS
4. Have a permanent and substantial disability, which causes inability to walk, or very considerable difficulty walking.
Children under the age of two may be eligible for a badge if they fall within either or both of the following descriptions.
1. A child who has a condition that requires that they be always accompanied by bulky medical equipment, which cannot be carried around with the child without great difficultly.
2. A child who has a condition that requires that they must always be kept near a motor vehicle so that they can, if necessary, be treated for that condition in the vehicle or taken quickly in the vehicle to a place where they can be so treated.
For any further information or queries, please contact the Blue Badge Department on 01582 54 72 72 or find them located at The Parking Shop, Gordon Street, Luton, Beds, LU2 1BQ or email [email protected].
Residential disabled persons parking bay
Any person who is a blue badge holder may apply for a residential parking bay provided
that:-1. The applicant’s home has no opportunity to provide off-street parking space.
2. Parking demand is so severe that parking space in close proximity to the applicant’s address cannot be found for major portion of most days. 3. The driver is a blue badge holder.
4. The passenger is a blue badge holder and the driver is unable to park in the road or allow the disabled person out, or cannot push a wheelchair from the nearest parking space, which is an unreasonable distance away.
It is unusual for a passenger to get a parking bay, as it is not unreasonable to expect that an able bodied driver, should double park if necessary to set down the disabled passenger and remove the
vehicle afterwards. Exception will be made where the passenger requires constant attendance.
Please note: The disabled parking bay is not for the sole use of the resident. Anyone with a blue badge can park in the space. Your child’s blue badge must be displayed at all times while parked in the bay.
House adaptations and equipment
If you require adaptations to your home you need to be referred to social services occupational therapist. You can refer yourself, but if you have a social worker it is preferable for them to make the referral. You should ask for a full assessment of your child’s needs and you can also get a carers assessment. The occupational therapist can provide toileting & bathing equipment, ramps & handrails to front door, stair lifts, special beds, etc. If you need to do extensive alterations to your house such as a bedroom extension, shower room etc. you can apply for the disabled facilities grant. Since December 2005, the disabled facilities grant is no longer means-tested for children under 18. However, there is a two to three year wait. If you are a council tenant the council will either adapt your property or move you to a more suitable property.
Contact childcare duty team on 01582 54 76 53 or 54 76 56
Special beds
If your child needs a special bed, Cotswold Cots make cots, beds and playpens to order. A special bed costs from £850, but should be provided by NHS or social services. Some charities will also help with the cost.
Contact Cotswold Cots on 01993 84 28 85
Home shopping
If your child is very ill, try and make life as easy as possible for yourself. Many pharmacist now offer a delivery service for the elderly and disabled, so speak to your local pharmacist and take advantage of this.
You can also ask to use a specially adapted trolley for your child to sit in whilst you do your shopping in most large supermarket stores.
Shopping for food is now so easy with the internet.
Details of delivery charges can be found on the following websites:
www.tesco.com
www.sainsburystoyou.com www.ocado.com
Services
There is help available when you have a disabled child, but often people do not know what is available or how to get this help. You can ask for a social worker from the children with disabilities team. They should be able to offer support and advice and get you the care you need.
Care coordination service
This is a service designed to support parents with a child, aged 0 to 3 years old, who has complex care needs requiring services from more than one of the service providers. (Service provider being: Luton borough council’s children & learning department and health)
The care coordinator is one named person who can help and support a family and point them to services they may require.
For more information please contact Lisa Hudson, development officer, care coordination service on 01582 54 81 06
Fairway: home based family support team
There is a small team of workers based at Fairway who can offer support to enable children and young people to participate in community activities, e.g. cinema, shopping and regular short breaks to enable parents to either have a rest or undertake other activities. They provide an evening sitting service to enable parents to attend events that would otherwise be difficult and they support parents on essential outings such as shopping for school uniforms.
Families can be considered for the service if they have a child aged between 0 and 18 years who has a disability. You can contact your social worker who will undertake an assessment to clarify the level and type of support required. If you do not have a social worker you can contact the Initial assessment team.
All staff are police checked (CRB) and have medical clearance before starting work with the team. Contact:
Fairway 01582 73 69 66
Initial Assessment team 01582 54 76 53 Children with Disabilities team 01582 54 75 82
Shared care
Shared-care is also called day-fostering. If you would like someone to help with your child a few hours per week, then you should consider this. A carer is matched against your child’s needs. You have a meeting between you, the shared carer, your social worker and shared care co-ordinator. An official agreement is set up between you, which stipulates your child’s needs and how many hours of shared care will be provided. The carer must be trained to meet your child’s needs, e.g. be trained in gastro-tube feeding, giving rectal diazepam etc, and this cost is met by social services. Usually you are allocated about 3 or 4 hours per week when the carer can take your child to their house for a tea visit or take them swimming, to the cinema etc. It should be a fun time for your child and you get a break too. Many school staff and nurses are shared carers.
Sometimes, social services allow a special needs child to stay over night once a month at the shared carers house. If this is not possible because your child for example, is in a wheelchair and could not get upstairs, needs to sleep in a special bed, needs oxygen etc., then speak to your social worker and see if the shared carer could baby-sit in your house instead.
Home carers
If your child requires lots of care because they are in a wheelchair or have had a recent operation, you can ask social services for a home carer. They are usually provided through an agency and are all police checked. You could get ½ - 1 hour help in the morning with personal care for your child, e.g. wash, dress, feed your child etc. You do not pay for this care but there must be a genuine need for the care. If your child is very ill or has had a recent operation, social services will sometimes provide care in the afternoon or evening.
Direct payments
Instead of social services providing shared care or home carers they can make a direct payment to you. Your needs will be assessed and you will be allocated so many hours per week. Then you can choose your own carer and times for care etc. and you pay the carer direct. Social services have employed an independent supporter worker who is based at The Disability Resource Centre. They offer support and advise regarding direct payments, drawings up contracts, paperwork, payroll service etc. This direct payment is only to be used to provide care and support for your child.
If you think you need any of the above contact your social worker to discuss it. If you
are finding it hard to cope you must stress that you need help and support to be able to care for your special needs child. Also, a carer often finds it hard to have time for a partner, other children etc., and tell your social worker you need a break for you, not just for the child.
Contact the children’s disability team on 01582 54 76 53 or 54 76 56
Hospital services
Luton and Dunstable hospital nhs trust
The Children’s unit consists of three wards – Squirrel, Rabbit and Hedgehog (Day Care) and the Assessment Unit (Ward 26a).
Whilst your child is in hospital we aim to work in partnership with you. In other words we are happy for you to participate in your child’s care as much or as little as you feel able to do.
You can provide familiarity for your child and the nurse can give you support and care during this stressful time.
We appreciate that children with disabilities have special needs and as parents / carers it is important for you to share this knowledge with us. The children’s ward is open for visitors from 8am – 7.30pm. There are no restrictions to visiting on the children’s wards but the nurse in charge may ask you to limit the number or length of stay of visitors if your child or others in the same ward area, are severely ill. (1-2pm Children’s rest time, no visiting except parents). You can telephone family and friends from the telephone at your child’s bedside. This phone takes incoming calls too so family and friends can contact you directly.
The doors to the paediatric unit are kept locked. Access to the unit is via a buzzer situated outside the unit.
The unit has a parent’s room where you can make yourself a drink and a snack and relax away from your child, but are within easy reach if necessary. A chair bed can be provided so you can sleep beside your child.
also welcome to bring food in for your child. Milk drinks and snacks are served to the children at regular intervals.
We are keen to allow your child to carry on with a normal home routine as far as possible. This includes allowing play and learning to continue. Our play room is open 8.30am – 4.30pm every day and our experienced play staff will be pleased to help. Schoolteachers work in the schoolroom and if necessary will liaise with your child’s school to ensure continuity of education.
If your child is being nursed in isolation a teacher and / or play leader will visit them.
The Paediatricians (children’s doctors) do a daily ward round. If you wish to speak to them please ask the nurse to arrange this.
Further information is provided in the “Welcome to Woodlands Children’s Unit” Information for Families leaflet or by contacting the hospital telephone: Hospital Tel No: 0845 127 0127
Direct Line to Rabbit Ward – 01582 49 71 05
Children’s Outpatient Department
Most children are seen within the Children’s Outpatient Department. The department is wheelchair accessible, has a breast feeding room, bottle warming facility and play facilities within waiting place.
Some children may be seen in other outpatient areas.
If your child has a disability or any other special needs requirements to enable her to attend an appointment please contact the Patient Advice and Liaison Service (PALS) on 01582 49 79 90.
Community paediatric team
your child needs regular injections, needs a wound dressed, is on oxygen etc. a paediatric nurse can visit your child in your own home. If your child has a life-threatening illness or has recently had surgery the team can also help. The paediatric nurses can provide a hospital bed and pressure reducing mattress for your child, either on a permanent basis or short-term following an operation.
Contact the team on 01582 70 81 39
Patient advice and liaison services (PALS)
PALS provides on the spot help for patients, their carers, relatives and friends during visits to the Luton and Dunstable hospital.
If you have any worries or concerns regarding the care of your child the PALS service is there to support you.
If you know someone who would like a PALS officer to visit them on their ward please contact the PALS service to arrange this on their behalf. PALS staff are also there to listen to any comments or suggestions from patient’s, relatives, cares that they may wish to make about the hospital services.
The PALS desk is located in the main entrance of the L&D and they are open from 9am until 6pm, Monday to Friday. They can be contacted on 01582 49 79 90, with an out of hours answerphone facility.
Paediatric epilepsy nurse service
Paediatric epilepsy nurse is based at Laporte Way, Kingsway and the service is aimed at supporting diagnosis, management and care of children and young people with epilepsy.
The nurse links care between the hospital and community, providing information and advice. The nurse supports consultant clinics at the hospital but also offers nurse led clinics that can be flexible to meet changing needs.
Special needs nursing service
The special needs nursing service is a skill mix team offering care to children and young people who have complex health needs/disabilities between age 2½ and 19 years living in Luton and South Bedfordshire. They provide clinical care in special schools such as gastrostomy feeds, administration of medication and support inclusion into mainstream education through assessment, care planning and training. Home visits are offered as required.
They offer training to social services and education staff to support
children’s needs at school and for respite. They provide information, advice for care management in school and for home.
The special needs team leader can provide equipment such as hospital beds and pressure relieving mattresses for your child for short/long term use.
The team Leader is based at Laporte Way, Kingsway and can be contacted on 01582 70 81 73.
The Keech cottage children’s hospice
The hospice supports families from across Bedfordshire and Hertfordshire who are caring for a child with a life-limiting condition. These children have a wide variety of conditions. Almost all will die before reaching adulthood. Care is available in-house at the beautiful children’s hospice in Great Bramingham Lane, near Luton, or via the Keech community nursing team at the family home.
Care is provided free-of charge. Referrals can be made by anyone but the referee must have obtained parental/carer permission before making the referral.
Keech Cottage also has a lovely hydrotherapy pool, which it hires out.
Special education needs (SEN) - Assessment
The special educational needs assessment team (SENAT) is responsible for administrating statutory assessments and the production of statements of special educational needs. If your child has special needs either a school or a parent can ask the council to assess a child’s educational needs. The assessment process has 4 phases.
Phase 1
The council will write to tell you that they are considering this request. You will be asked to write to the council to tell them why you think an assessment is needed. The request will be considered and the council has six weeks to decide whether an assessment is needed.
Phase 2
The council will write and tell you if your child’s needs should be assessed. The council will ask the following people for their views about your child’s educational needs; parents; child’s school; nursery or playgroup; an educational psychologist; a school doctor; social services and any other people who have worked with your child, e.g. consultant, physiotherapist, occupational therapist, speech and language therapist.
Phase 3
When all the reports have been collected they will be considered by the local authorities (LA) panel known as the statutory provision and assessment group (SPAG). This is a group of representatives from education, social services and health who meet every second Thursday morning.) The panel will consider:
l whether the council should issue a statement of SEN for your child
You will either receive a proposed statement or a letter to tell you why the council has decided not to issue a statement. The council has 2 weeks to do this. You can appeal if you do not agree with the outcome of the assessment
Phase 4
If you are happy with the contents of the statement, the council will then finalise the statement. This means that your child’s school will receive a copy.
Your child’s needs and progress will be reviewed at least annually and you may discuss the proposed statement with the named officer. The council has eight weeks to agree the proposed statement with you before finalising it.
If you have discussed the statement with the named officer and you are still not in agreement you have the right to appeal to an independent tribunal, called the SEN and disability tribunal (SENDIST). You can also contact parent partnership or IPSEA for advice (see below).
It is very, very important that you attend your child’s annual review. If you do not want to go alone you can ask a friend or social worker to go with you and support you. You must ensure that you get reports from everyone involved in your child’s care, e.g. physiotherapist, speech and language therapist, music therapist, surgeon, school doctor, etc. All your child’s special educational needs should be outlined in Part 2 of the statement with a provision for each need in Part 3.
Contact:
The SEN assessment team Unity House, 111 Stuart Street,
Luton LU1 5NP Telephone: 01582 54 81 32 SEN and disability contact details
SEN help line: 01325 39 25 55 Discrimination helpline: 0870 606 5750
Special education needs (SEN) - statement
A statement of SEN is a legal document laying out the details of the special needs that your child is considered to have. There are 6 parts to the statement:
Part 1 - introduction
l the child’s name, address and date of birth l the child’s home language and religion
l the name and address(es) of the child’s parents
Part 2 - special education needs
Details of the child’s SEN as identified during Statutory Assessment, attached as appendices to the statement.
Part 3 - special educational provision
The special educational provision that the LA considers necessary to meet the child’s SEN.
A. The objectives that the special educational provision should aim to meet.
B. The special educational provision that the LA consider appropriate to
meet the needs specified in part 2 and to meet the specified objectives.
C. The arrangements for monitoring progress in meeting those objectives, particularly for setting short- term targets for the child’s
Part 4 - placement
The type and name of school where the special educational provision specified in part 3 is to be made.
Part 5 - non-educational needs
All relevant non-educational needs of the child as agreed between health services, social Services and the LA.
Part 6 - non-educational provision
Details of non-educational provision to meet the needs of Part 5. Along with the copy of the proposed statement, you will receive a letter telling you how you can give your views on the statement before a final statement is issued. Details of LA mainstream and special schools in the area are sent to you at this point.
You have a right to express a preference for the LA maintained school you want your child to attend, providing:
l the school you choose is suitable for your child’s age, ability and SEN; l your child’s attendance there will not effect the efficient education of
other children already at the school;
l placing your child in the school will be an efficient use of resources.
Details of non-maintained and independent schools approved by the secretary of state for education as suitable for children with special educational needs are available upon request. You may ask for a place at a non-maintained independent school outside the LA, if you feel it will best meet your child’s needs, although the LA is not obliged to fund a place in one of these schools.
Education support services
There are 5 education support services that offer support in a variety of ways for children with special needs and their families. The aim is to provide support to enable children with special needs to succeed educationally, socially and emotionally in Luton mainstream schools. The five support services are:
l hearing impairment services l learning support services l social communication difficulties l support team for under 5’s l visual impairment service Contact:
Educational support services Unity House, 111 Stuart Street, Luton LU1 5NP
Tel: 01582 54 82 20 Minicom: 01582 54 81 06
Email: educationsupportservice @luton.gov.uk
Educational Psychology Service Unity House 111 Stuart Street Luton LU1 5NP
Special schools
There are 3 special schools in Luton, 2 at primary level and 1 secondary school.
They all employ high levels of staff to educate and support the children. This ensures both the child’s educational needs and care needs are met. All children have access to a broad balanced and relevant curriculum including the national curriculum. For most children it is necessary to provide multi-sensory experiences to enhance and enrich learning opportunities. Facilities at the 3 schools are excellent with all schools having a new ICT suite, food technology room and comprehensive library as well as specialist facilities.
Educational visits are a very important part of the curriculum for every child in order to provide children with opportunities to make sense of the world in which they live. The schools have their own mini-buses to take the children on such visits.
Each school works closely with families providing support, information and advice regarding their child.
If you would like to visit one of the schools please contact the principal, as detailed under each school.
Lady Zia Wernher school
Lady Zia Wernher school is a primary special school for children between two and a half and eleven years of age.
All the children have special educational needs with the majority having severe and complex levels of need. For the children this means they are working at a level significantly below that of their mainstream peers. The children also have significant medical needs.
Because the children have physical disabilities and a large percentage of the children are non-mobile, just beginning to walk or have an unsteady
monitoring for the children. This helps to ensure the children retain their mobility as far as possible, which is particularly important, if the children have surgery. There is also occupational therapy input to monitor the children’s posture and seating requirements. Speech and language therapy support communication and eating and swallowing difficulties. The input and support from this multi-professional team helps to ensure the children gain optimal benefit from the curriculum on offer at school.
The majority of the children are non-verbal and so a key area for all the children is the development of their communication skills. Makaton signs and symbols are used to aid communication.
Specialist facilities include a hydro-therapy pool; multi-sensory room; ball pond; music garden and outside play equipment including a wheelchair swing and roundabout.
The school has a toy library with a great selection of toys to borrow including some switch-adapted toys.
There are after school clubs during term time and in the summer holiday the Rainbow special needs playscheme provides two or three weeks day time respite care for families. The school
runs various courses for parents and carers including Makaton, Moving and Handling and Infant Massage.
Contact:
Mrs Diane May - principal Ashcroft Road
Luton LU2 9AY
Tel: 01582 72 87 05 Fax: 01582 72 23 84 or
Richmond Hill school
Richmond Hill school is a school for primary aged children with severe and complex difficulties.
Staff are supported by an extensive network of agencies such as speech and language therapist, the hearing impaired service, the visually impaired service, physiotherapists, occupational therapists, music therapists, educational psychologists, the social and communications difficulties service and those who specialise in English as a second language. British Sign Language (BSL), TEACCH and PECS are used within the school to help children communicate.
Classrooms are fully resourced to cater for a range of needs and it has a facility specifically designated for pupils with autism.
Specialist facilities include: multi-sensory room; soft play room with ball pond; and excellent outside play facilities.
Children also use the hydrotherapy pool at Lady Zia Wernher and swim at Putteridge recreation centre.
Contact:
Mrs Jill Miller - principal Richmond hill school Sunridge Avenue Luton LU2 7JL
Tel: 01582 72 10 19 Fax: 01582 45 30 93
Woodlands secondary school
Woodlands is a secondary school and further education unit for children aged 11-19.
Students will have been assessed as having profound and multiple learning disabilities, severe learning disabilities or complex moderate learning disabilities. Within the range students have autistic spectrum and other communication disorders, as well as visual or hearing impairment. Some children have significant medical needs.
The specialist subject resources in art, design and technology, food technology, ICT and science give opportunity for students to experience a full secondary education that mirrors any secondary school.
Specialist facilities include warm water therapy pool; multi-sensory room and sensory garden.
Some children have physiotherapy programmes. Students can also receive input from occupational therapist, speech and language therapist and music therapist as required.
Makaton, BSL and TEACCH are all used to help children communicate. Many children write or communicate using symbols.
Careers advice is also available from the schools connexions advisor. Woodlands further education (16-19 year olds) is offered to up to 24 students who continue to need a high level of adult intervention and support to progress in their learning and for whom current local college or other post 16 provision is currently inappropriate.
Students follow programmes of study that lead to national accreditation and the main focus is on developing daily living skills and personal management and decision-making skills to support students when they finish school.
Contact:
Mrs Sheila Read - principal Woodlands secondary school Northwell Drive Luton LU3 3SP Tel: 01582 57 28 80 Fax: 01582 56 55 06 Email: [email protected] Website: www.woodlandsluton.ik.org
Disabled student allowance
The disabled student allowance (DSA) is available to assist students in higher education with a disability or specific learning difficulty e.g. dyslexia, to benefit as fully as possible from their course. There are three elements to the DSA, which covers specialist equipment, non-medical helper support and other general expenses. In certain circumstances, it might also be possible to provide additional assistance with travel costs to university. The DSA is available for students who are studying full time, part time and postgraduate courses including distance-learning students. If the course is part time you must complete it in no longer than twice the time taken to complete an equivalent full-time course.
How much you get does not depend on your income or that of your family. You do not have to repay this help. However, you will need to provide medical proof of your disability. The LA must be satisfied that your disability or specific learning difficulty will mean that that you have to spend more while on your course.
Contact:
Student support team on 01582 54 80 80 or Student finance direct on 08456 07 75 77
Independent panel for special education advice (IPSEA)
IPSEA is a volunteer-based organisation and many of the volunteers providing telephone advice and support at tribunals are themselves parents of children with special educational needs who have been helped by IPSEA in the past. IPSEA offers free and independent advice on local authorities (LA) legal duties to assess and provide for children with special educational needs.
IPSEA’s aims are:
l to help ensure that children with special educational needs receive the
special educational provision to which they are legally entitled;
l to help ensure that parents and children’s views are taken into account
when children’s needs are assessed and decisions are made about special education provision and school placement
IPSEA may be able to help if you feel your child’s needs are not being met, e.g.,
l if you want the LA to assess your child, but they refuse l if the LA refuse to issue a statement after assessing your child
l if you want to appeal against a statement when it is first made or when
it is amended
l if you are not happy with the way the school is meeting your child’s
special educational needs
l if the LA will not put the school you prefer on the statement
l if you are unhappy with the amount of help your child is being given.
IPSEA has 2 volunteers in Luton who can talk to you on the telephone or sometimes visit your home to discuss your child’s needs.
For information, support and advice Call: 0800 018 40 16
Parent partnership service
The aim of parent partnership services is to ensure parents of children with additional needs have access to information, advice and guidance in relation to the special educational needs of their children so that they can make appropriate, informed decisions.
The parent partnership service can offer:
l information and advice on all matters concerned with your child’s
special educational needs
l help with decision-making processes concerning yours child’s education l help to get your views and does of your child heard
l contact with voluntary organisations that are able to offer support and
advice
l support from Independent Parental Supporters.
An independent parental supporter is a trained volunteer. They can:
l listen to your concerns
l attend meetings and take minutes for
you
l help you write letters to your
child’s school and local education authority
l help you understand the SEN
Once a year parent partnership organises a parents conference for parents of children with special needs where parents, teachers and local authority officers discuss issues related to provisions in mainstream and special schools and the progress of inclusion in Luton.
Parent partnership publishes a newsletter 3 times a year called Luton parent partnership links. These newsletters are very informative and well worth reading. The newsletter is sent to all parents of children with a statement of special education needs.
For information, support and advice
Call: 01582 54 81 5 6 or 01525 71 97 54 Write to: Parent partnership service
Unity House 111 Stuart Street Luton LU1 5NP
Holidays
Holidays for disabled children
There are lots of companies now offering wheelchair friendly holidays. There are self-catering holidays, hotels and package holidays available. Adaptations available include walk-in-showers with shower chair, mobile hoists, electric adjustable beds, hoist into swimming pool, and rental of wheelchair accessible vehicles. Holidays are available in UK, Europe and USA including Florida. Some of the companies are as follows:
Grooms Holidays: Hotels & self-catering accommodation in the UK. Tel: 08456 584 478 www.groomsholidays.org.uk
Enable Holidays: Package holidays to Europe & Florida. Tel: 0871 222 4939 www.enableholidays.com Access Travel: Package Holidays to Europe & Florida. Tel: 01942 888 844 www.access-travel.co.uk
Holidays For All is an information website: www.holidaysforall.org.uk Locally ‘Double S Travel’ in Round Green offer a wide range of tailor-made accessible travel options.
Tel: 01582 752752 www.doublestravel.co.uk
The Summertime trust
The Summertime trust was formed in 1995 to provide holiday
accommodation for children and families who are affected by disability and in need of a break. They provide free holiday accommodation for the whole family - similar to booking a self-catering holiday but without the expense e.g. a country cottage in the Lake District or caravan by the sea in Northumberland. They are also developing and expanding a range of accommodations including those specially converted for children with
There are lots of charities that can provide help if you have a disabled child. Most are means tested, but not all, so it is worth applying. They can help with various things such as: help with the cost of a holiday; provide a washing machine or tumble dryer; provide equipment that your child may need; or make your garden more accessible for your child. Some charities that may help are as follows:
Children Today Charitable Trust Tel: 01244 33 56 22 ELIFAR Foundation Tel: 02392 26 79 96 Handicapped Children’s Aid Committee Tel: 0207 286 4214 Happy day’s children’s charity Tel: 01582 75 59 99 Make-a-Wish Foundation (Life-threatening illness) Tel: 01276 24127
Promise Dreams Tel: 01902 37 83 95
The Family Fund (Rowntree Trust-Gov Charity) Tel: 01904 62115 Variety Club of Great Britain Tel: 0207 533 6600
Fledglings
Fledglings is a not-for-profit organisation, which helps parents and carers of a child with special needs of any kind to find simple, affordable solutions to practical problems. They offer a free product search service to locate toys, clothing, developmental aids, feeding equipment, water-proof bedding and other items. They can usually locate a suitable product and supply it at a competitive rate.
Tel: 0845 458 1124 or www.fledglings.org.uk
Contact a Family
Contact a Family is the only UK wide charity providing advice, information and support to the parents of all disabled children - no matter what their health condition. They can also put you in contact with other families whose child has the same diagnoses as your child.
They have an excellent medical directory of specific conditions and rare disorders.
Tel: 0808 808 3555 Website: www.cafamily.org.uk
All children with special needs in Luton can be put on this register. You are then issued with a card. This has proved very useful in situations when it is not obvious that your child has special needs.
You can also use the card to get free or concessionary tickets into some places.
Whipsnade Zoo, Woburn Safari, Mead Open Farm, & Gulliver’s Land all allow a carer in for free.
Contact: Christine Collis 01525 84 05 43 or email [email protected]
Saving for your child
Normally saving for your child’s future is a very good idea. However, if you are saving part of your child’s DLA every month you could encounter problems in the future. When your child is 18 they are means-tested for any care and equipment they require. If your child has between £3,000 and £8,000 in savings, benefits will be reduced and you will be required to pay for some care, equipment etc. If your child has over £8,000 in savings you will have to pay for anything your child needs, and they will not be able to claim Income Support.
Also, a child cannot earn more than £100 a year in interest. If they do the Inland Revenue counts it as a gift from the parents and charges the parents tax on the interest. If the mum is not working you could keep the savings account in her name re the child, and mum can use up some of her tax free allowance and no tax will be payable. If you have other children you can put some money in their name.
Also careful consideration should be taken when writing a will and leaving money to a child with learning difficulties. Professional advice should be taken.
Autism Bedford
Tel: 01234 35 07 04 www.autismbeds.org Bedford & District Cerebral Palsy Society Tel: 01234 35 17 59 www.scope.org.uk Children Living with Inherited MetaBolic Disorders Tel: 0870 7700 326 www.climb.org.uk Downs Syndrome
Tel: 0845 230 0372 www.downs-syndrome.org.uk
MENCAP (Herts. & Beds Area Office) Tel: 01582 56 00 03 www.mencap.org.uk Muscular Dystrophy (Info. & Advice Line) Tel: 0207 720 8055 www.muscular-dystrophy.org Epilepsy Action
Tel: 0808 800 5050 Website:www.epilepsy.org.uk British Dyslexia Association
Tel: 0118 966 8271 Website: www.bdadyslexia.org.uk National Blind Childrens Society
Tel: 01278 76 47 70 Website: www. nbcs.org.uk National Deaf Children’s Society
Tel: 01234 85 69 55 Website: www.ndcs.org.uk Skills for life adult learning (to improve confidence with spelling, writing, reading and boosting maths skills)
There are a number of clubs and groups in Luton, which provide activities specifically for children and young people with special needs. Here are details of these activities. However, they may change so please contact them direct if you require more information.
Access 2 Sport Wigmore Hall Luton
Tel: 40 02 72
Works closely with Luton’s special schools and provide choice of activities via Woodlands and Richmond Hill schools.
Additional activities available include swimming, football, trampoline, athletics and cricket.
Active Luton
Luton Regional Sports Centre St. Thomas’ Road
Stopsley Tel: 41 67 72
Gym sessions for young people with special needs, mainly physical and sensory impairments, aged 14+.
Chapel Street nursery Tel: 41 35 52
Sibling groups- for brothers and sisters of children with special needs. Tuesday after school term time only, also holiday playscheme.
Also: dad’s support groups; parent support groups; and adult education classes.
Families United network (FUN)
playschemes, swimming sessiions at Keech Cottage and trips out. Run by parents of disabled children.
Friends of Bright Eyes Dallow Road Primary School Tel: 55 63 63
For young people age 7-12 years. Saturday social group and holiday playscheme. Specialise in providing support to families from ethnic minorities.
Lea Manor youth club Northwell Drive Luton
Tel: 57 97 14
For young people aged 11+. There is a youth club on Friday nights term time only and a holiday playscheme.
LOAF (Loads of Autistic Fun) Based at Rothesay Nursery Tel: 01234 35 07 04
For children on the autistic spectrum. Meet on alternate saturdays and also holiday playscheme.
Disability Resource Centre Poynters House
Poynters Rd Dunstable Beds LU5 4TP 01582 47 09 00
Infant massage sessions for children with special needs
Infant massage is a unique bonding experience between you and your child that can allow your child to teach you what they mean by the various signs they give you through their body language.
To a child, touch is talk and even though your child may not speak they still have a lot to say, so they use body language, cries, coos and other sounds to communicate with you. Kind compassionate touch coupled with sound knowledge of massage principles becomes a powerful and therapeutic tool. We believe that massage should become a consistent, therapeutic interaction, so that children with special needs will be touched literally and emotionally everyday.
General benefits include:
l promotes a sense of well-being and relaxation l activates central nervous system
l promotes restoration of muscle function and joint harmony l aids reduction of pain and dysfunction in muscles and joints l boosts immune system and improves general function l increases and improves circulation
l encourages the elimination of toxins
l relief from digestive problems, such as, wind, colic and constipation l reduces emotional anxiety and calms the mind
l Tactile sensations help with the organisation of the mind l Massage reduces certain types of Oedema
l Has been noted to decrease pain l Decreases anxiety, stress and depression l Provides an opportunity for the parents to relax l May enhance awareness of body parts
What can I expect from my course?
The duration of the course is 5 weeks and each class last for approx 1 hour. Each week you will learn how to massage a different part of your childs body, so by the end of the course you will know how to give your child a full body massage. The classes will be relaxed and children are welcome to express themselves in any way they feel during the classes, crying is absolutely allowed and there is no need to feel concerned if your child is very vocal during classes.
You will receive at the beginning of each course, a 50ml bottle of oil, to be used throughout the course. During the course information and articles will be given out, along with a compendium of all the strokes learned.
Contact: Margaret Matthews Lady Zia Wernher School Ashcroft Road Luton Tel: 72 87 05 or 07851 03 43 54 between 4pm and 7pm
This information in this booklet was prepared by Noreen Walsh, a parent from Lady Zia Wernher school, in June 2005 and updated in March 2007. Any feedback would be gratefully received.
If you have any queries regarding the above please contact Noreen Walsh, parent govenor or Dawn Baxter, SEN Governor of Lady Zia Wernher school on 72 87 05.
The information held within this booklet is subject to change. If you notice an error or omission, please contact Luton Children’s Information Service on 54 88 88 or e-mail [email protected] The producers of this booklet would like to thank Noreen Walsh, the parents of Lady Zia Wernher school and the Pursuing Perfection Steering Group for their contributions to the [email protected]
