General Information
SELF HELP GROUPS
ADHD
The group arranges activities for both parents and children. They endeavour to organise regular outings for families and provide information and resources about ADHD. The group meet monthly for an informal chat every first Tuesday at 7.30pm in Snowdrop Bar, Snowdrop Lane. Haverfordwest.
Contact:
Pembrokeshire Children's Centre on 01437 764569 for further information.
Deaf Children’s Society
The Deaf Children’s Society provides support, advice and special equipment to families caring for a child with hearing impairment. They meet on the second Wednesday of each month at Pembrokeshire College at 7.30pm. The meetings are very informal and parents of newly diagnosed children are particularly welcome.
Contact:
Jackie Storrow on 01437 781078
Epilepsy Support Group
This is a local support group for people with epilepsy and those who support someone who has epilepsy. The group meets on the first Wednesday of every month at the NCH Children’s Centre in Haverfordwest.
Contact:
Dee Polacarz on 01437 764569
Fishguard & District Parent Support Group
This is a group made up of parents who get together to arrange activities for their children, both those with and without special needs and provide support for each other. If you live in the Fishguard area and want to know more:
Contact:
Nina Williams on 01348 872381or Mandy Foot on 01348 872397
Home Start Pembrokeshire, London House, Alban Square, Aberaeron, Ceredigion, SA46 0AJ
Co-Ordinator Nikki Crews Sweet Telephone: 01545 571317 or 07914 694469
High Support Needs Group
This group helps and supports all parents/carers of children or adults with a learning disability. They hold monthly meetings usually in Narberth. In addition they offer telephone support to those who cannot get to meetings and put parents in touch with one another.
Contact:
Carol Mason 01834 831833 for further information.
PAG - Parents Action Group
If you are interested in campaigning for improvements for children with special needs and their families this might be the group for you. The group usually meets monthly at various locations around the county.
Contact:
Dee Polacarz at the Children’s Centre 01437 764569 for further information.
Pembrokeshire Carers Outreach
This organisation supports people who are caring for a child, or adult who is disabled or sick. They provide information on carer and benefit issues, advice and listening support.
Contact:
Telephone 01437 767762 or call at:
The Princess Royal Trust Pembrokeshire Carers Centre,Meyler House, StThomas Green,Haverfordwest SA61 1QP
Open weekdays, except Wednesday, 10am to 1pm and 2pm to 4pm.
Pembrokeshire Young Carers
The Young Carers project supports young people under 18 who care for a parent or family member who is sick or disabled. The project tries to give young carers the opportunity of meeting other young people who also care for their relatives or friends. They organise social events to bring young carers together.
Contact:
Tracy Coles at Pembrokeshire Carers Centre, Meyler House, St. Thomas Green, Haverfordwest SA61 1QP
Telephone: 01437 779188.
Pembrokeshire Parents / Carers Association
The group aims to provide information, support and to assist with concerns of parents who are caring for a child or adult son or daughter. Meetings are held in the North and South of the county alternately, usually on the third Wednesday of each month. They are held in the mornings at either the Pembroke Community Education Centre or Milford Haven Town Hall.
Contact:
Mrs Pat Jamieson (Chair), 37 St Michaels Road, Pembroke. SA71 5JQ
or Mrs Joan Ward (Secretary), 3 Brookside Estate, St Ishmaels, Haverfordwest. SA62 3TE.
SIGA (Special Interest Group in Autism)
The aim of the group is to bring together people who live or work with individuals on the Autistic spectrum and to inform and support each other. This includes parents and professionals. The group meets once every half term, usually at the Children’s Centre. Sometimes there is a speaker but at other times it is a social occasion. The group maintains a small library at the Children’s Centre.
Contact:
Helen Brandrick 01437 563118 for more information.
TLC (Tender Loving Care) Support Group
This group is for parents of children with life threatening or limiting illnesses and conditions. Qualified therapists can offer relaxation yoga, aromatherapy, reflexology, reiki, craniosacral therapy, Bowen therapy and counselling. It is an opportunity to pamper yourself and relieve tension and stress. The meetings are held once a month - except August - on the first Wednesday between 6pm and 9pm at the Child Health Department, Withybush Hospital, Haverfordwest.
Contact:
Gill Lee-Munson, Health Visitor on 01437 762885
or leave a message on 01437 773988 Box No 2885.
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NATIONAL ORGANISATIONS WITH LOCAL CONTACTS
Arthritis Care
This organisation gives information, advice and a newsletter to people of all ages who have arthritis.
Contact:
Caroline Cox at Ground Floor Office, Amber Gate, City Walls Rd, Worcester WR1 2AH. Telephone 01905 745595 for further information.
ASBAH (Association for Spina Bifida and Hydrocephalus)
This is the South Wales group who hold meetings in various locations in the area. They have recently started holding meetings in Haverfordwest, usually at the Children’s Centre. They provide information and advice and the chance to meet other people with Spina Bifida and Hydrocephalus and their families.
Contact:
Jim Done on 01446 735714.
Epilepsy Action
This is the working name for the British Epilepsy Association whose aim to improve the quality of life for all people with epilepsy and their families. There is also a local accredited volunteer who can visit families in their own home to give advice and support.
Contact:
The free helpline 0808 800 5050. Fax: 0808 80 5555 E-mail: helpline@bea.org.uk
CLIMB
CLIMB offers information and advice to parents of children with any type of metabolic condition. The nearest representative is Pam Davies, Family Services Manager who is very willing to be contacted by Pembrokeshire parents.
Contact: 0800 652 3181
Address: 176 Nantwich Road, Crewe, Cheshire, CW2 6BG
Contact a Family
CAF provides information to parents of a child with any kind of disability or chronic health condition. They can help parents of children with rare conditions make contact with other families with similar children. CAF also organises conferences and training for parents.
Contact: 02920 396 624
Down’s Syndrome Association
There is a West and Mid Wales group that meets quarterly in either Carmarthen or Aberystwyth. It is an opportunity for parents caring for a child or young person with Down’s Syndrome to meet other parents and exchange advice and information. Often there is a speaker at the meetings talking about issues relevant to Down’s Syndrome.
Contact:
Richard Morgan on 01834 813332 or email richard.morgan@downs-syndrome.org.uk
Mencap
Mencap Cymru provides support and information on a wide range of issues that affect people with a learning disability, their families and carers across Wales. Mencap now has a free helpline that gives direct contact with the Mencap Cymru Community Support Team and Independent Support and Information Service.
Telephone 0808 8000 300 Monday to Friday 8.00am to 8.00pm
Saturday and Sunday 10.00am to 4.00pm.
Muscular Dystrophy
The Muscular Dystrophy Campaign office for Wales is based at the Institute of Medical Genetics, University Hospital of Wales, Heath Park, Cardiff, CF14 4XW. Sally McKensie is the Family Care Officer who can provide information and advice to families and also visits to the home to offer support.
Contact: 02920 744052.
SNAP Cymru
SNAP is a Parent Partnership Service which gives information about a whole range of services available both locally and nationally for parents and children who have, or may have special educational needs. This covers Education, Social Care and Housing, Health, Voluntary Groups, Benefits etc. Parents can ring the project, request a home visit or call into the office. Trained volunteers are able to give parents/carers advice, support and information about their children or young people.
Contact:
c/o Show Office, County Showground, Haverfordwest SA62 4BW
Telephone 01437 768097 or Email: kate.warner@snapcymru.org.uk
SCOPE
Scope offers support and advice to people with Cerebral Palsy and their carers. If you would like further information :
Contact:
NCH Children’s Centre on 01437 764569 for the contact number
West Wales Dyslexia Association
The helpline is run by committed volunteers and offers help and guidance to parents of children with Dyslexia or parents who are concerned that their child might have Dyslexia. 0118 966 8271 or visit the website for information on meetings and events (some are held in Carmarthen) at www.swansea.gov.uk/wwda
Local Dyslexia Support
There is now a local support group within Pembrokeshire. They meet at the Cricket Club every month on a Tuesday evening.
Contact:
Sandra Young on 01437 721450.
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BLUE BADGE SCHEME / TRAVEL
Blue badges allow more freedom to park for children with disabilities. They are now accepted throughout Europe.
HOW DOES THE BLUE BADGE SCHEME WORK?
The Scheme allows a car displaying a current badge with a disabled person as a passenger or driver to park:
Without charge or time limit at parking meters on the street and in Pay and Display bays.
Without time limits in streets which have time restrictions within them.
For a maximum of three hours on single or double yellow lines.
ARE THERE ANY RESTRICTIONS?
The disabled person should not be IN the car when it is parked and there are some restrictions on the car….
The blue parking disc should be displayed, showing the time of arrival.
The car should not parked in a bus or cycle lane while there are restrictions on the use of those lanes.
The car should not be parked in a loading bay.
All the usual parking regulations should be observed e.g. it should not be causing an obstruction
WHO CAN HAVE A BLUE BADGE?
In order to quality for a Blue Badge, a child must be two or over and:
Be receiving the higher rate mobility of DLA (Disability Living Allowance), or
Be registered blind, or
Have a ‘permanent and substantial disability which causes inability to walk or very considerable difficulty in walking’.
WHERE DO I GET A BLUE BADGE AND HOW MUCH WILL IT COST?
You can obtain a Blue badge from the PIPPA building which is situated behind the Tourist Information Office on the Old Bridge in Haverfordwest. Pembrokeshire charges a small fee for preparing the badge. Telephone 01437 760999
WHAT IF I AM REFUSED A BLUE BADGE?
If the Local Authority refuses to issue a Blue Badge because they do not think your child has ‘a very considerable difficulty in walking’ there is no formal right of appeal. You could see your Councillor or Citizen’s Advice Bureau to see if they can help you. The only formal right of appeal is if you have been denied a badge on grounds of ‘misuse’ – then you can appeal to the Secretary of State for Environment, Transport and the Regions.
Free Travel Passes are available to children and young people with disabilities who live within the county, they can have unrestricted free travel on bus services THROUGHOUT WALES. It also means that if the child or young person cannot travel alone, whoever travels with them also goes free!
HOW CAN YOU GET A FREE TRAVEL PASS?
The Travel Pass is available free of charge to anyone living in Pembrokeshire through their LOCAL POST OFFICE. You have to ask for and complete an application form. You will need to take along proof of eligibility, proof of address and one current passport size photograph of the child.
Parents of children with disabilities also need to ask the Council for a CONCESSIONARY TRAVEL PASS APPLICATION – DISABLED ELIGIBILITY ASSESSMENT FORM. You can contact the Transport Department on 01437 775 227 for one of these forms.
HOW DO I KNOW IF MY CHILD IS ELIGIBLE?
You need to show that your child fits one of the following criteria:
Is a child with a disability that has a substantial and long term effect on his/her ability to walk. The proof for this may be a valid Orange or Blue Badge, or a benefit book, or a letter showing entitlement to the higher rate mobility component of the Disabled Living Allowance Benefit.
OR Is a child who is blind or partially sighted.
OR Is a child with impaired hearing.
OR Is a child without speech.
OR Is a child with upper limb difficulties.
OR Is a child with a learning disability.
You could get a letter of confirmation from a worker who knows your child well to go with your application.
CAN PARENTS TRAVEL FREE AS WELL?
If your child is eligible for a Travel Pass this will also include free travel for whoever is travelling with them as an escort. Obviously, the child has to be making the journey with the adult at the same time.
WHAT OTHER TRAVEL IS INCLUDED IN THE SCHEME?
Anyone who has a Travel Pass can also travel at HALF PRICE FARE on Pembrokeshire Country Cars. If you travel using Country Cars you have to show the driver the pass when you pay and he/she will record the number of the pass and ask you to sign a receipt for the journey.
WHAT IF I NEED MORE INFORMATION?
Telephone the Transport Unit on 01437 775097 during normal office hours, Monday to Friday.
CARS FOR CARERS
This is a Voluntary Transport Group which provides transport for Carers within Pembrokeshire. To qualify to use the service you must be an unpaid Pembrokeshire Carer. You can travel with or without the person you are caring for within Pembrokeshire on essential journeys. This may include attending for appointments, shopping, meetings, etc. All you need to do is request the transport, giving 48 hours notice and make a small contribution towards the cost of the journey. Tel: 01437 768195
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DIRECT PAYMENTS
Any child or young person who needs support in their community, or for overnight stays, needs to be assessed by the Social Care & Housing Department. After assessing their needs the Social Care & Housing Department draw up a CARE PLAN which sets out what services would be offered to the family. Families can then choose whether to use the services being offered, or ask for a Direct Payment. A Direct Payment means the family can buy the support they feel meets their child or young person’s needs - as long as it fulfils the care plan.
WHAT’S DIFFERENT ABOUT DIRECT PAYMENTS?
Instead of using the services that are currently offered from Social Care & Housing, families can ask for a Direct Payment. With a Direct Payment a family can decide how they want to provide the support. They may know of someone they would like to pay to provide social opportunities for their child or young person. Families can choose to have a Direct Payment for all their support or for part of it. If they decide they want to use it for part of their support, Social Care & Housing can arrange services for the rest of it.
WHAT ARE THE ADVANTAGES OF A DIRECT PAYMENT?
More control
More choice
More flexibility
Better value for money
You directly hire and fire your own support workers, provide job descriptions and contracts, so that the support is more tailored to your family
WHAT CAN’T DIRECT PAYMENT PAY FOR?
A Direct Payment is NOT a benefit, and it doesn’t affect the money young people receive as their benefits either.
It should be spent on getting the support the child or young person has been assessed as needing.
The Direct Payment cannot be spent on things such as clothes or food.
Direct Payments are given to provide services to families cannot be used on equipment, although it is possible to have financial help towards equipment via a Direct Payment requested for this purpose. A Direct Payment cannot be used to pay a close relative to support a child or young person.
HOW CAN A FAMILY GET A DIRECT PAYMENT?
Parents or guardians of children 0-16 can ask for the money on behalf of their children. After the age of 16 the young person would have the responsibility for managing a Direct Payment. During a transition period, they would be assessed to see if they would be able and willing to do this, with support. If they do not have the capacity to manage a Direct Payment with support, the family could set up a Trust to manage payments on their behalf. This would not be called a Direct Payment, as the control and choice would be with the Trustees rather than with the young person. Families and young people are offered help and support to make these decisions.
HOW IS THE SUPPORT SET UP AND MANAGED?
A family can get help with setting up and managing their financial support. They can employ their own support workers or people they already know in their area. If they decide to employ their own support workers, they need to be thinking about:
What they want the support workers to do
What sort of people they want
How to find the right staff and make sure they do a good job
Who will support them if their usual support workers are sick or on holiday
How they will manage the payment of the workers and how they will keep good financial records.
DON’T WORRY….. the Rowan Organisation offers support to handle this! - see below.
WHAT ABOUT THE FUTURE?
Direct Payments can change just as the children or young person’s needs change. It may be that a family decides they don’t want to use Direct Payments any more, or that they want to use them in a different way. This can happen.
The Social Care & Housing Department will want to check whether the child or young person’s needs have changed. All children and young people will have regular reviews of their services – whether they use the Department’s services or Direct Payments. Reviews make sure that the child or young person is receiving the services the Care Plan says they need. Sometimes, through reviews, the Care Plan may change if the needs have changed. This will mean that the payments will also alter to reflect this change. The family can let the Department know of any changes – they do not have to wait for a review.
WHERE CAN I GET HELP WITH DIRECT PAYMENTS?
Pembrokeshire County Council has employed the ROWAN ORGANISATION to help families who decide they would like to work with Direct Payments. Rowan offers support with advertising, interviewing and general recruitment of staff to support your children or young people. They will also help with financial arrangements – payroll, tax, national insurance etc for families who employ staff in this way. If you would like more details you should contact: Linda Hackett on 01437 776590.
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CARER’S ASSESSMENT
Anyone who is providing regular care for a disabled child or young person can ask the Social Care & Housing Department for a Carer’s Assessment for themselves. You can ask someone to come and visit you to undertake the Assessment or you can fill in a simple questionnaire yourself.
WHAT IS THE PURPOSE OF A CARER’S ASSESSMENT?
A Carer’s Assessment is your opportunity to let Social Care know about your own circumstances. By filling in the form it tells the department how much care you provide and what sort of care you are involved with. It also tells them how caring affects you, what help you get now and what help you think you may need.
If you think you would like to have a Carer’s Assessment you should contact:
Philip Vickery
Assessment & Care Management Team
Haverfordia House
Winch Lane
HAVERFORDWEST
SA61 2DN
Telephone: 01437 776096
You can ask for a home visit or for a form which you can complete yourself.
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DISABILITY DISCRIMINATION ACT
From September 2002 all children with disabilities have the right to challenge any discrimination they experience within Education.
DOES THE DISABILITY DISCRIMINATION ACT COVER ALL CHILDREN?
The Act is for children who have a..
“….physical, or mental impairment, which has a substantial and long term adverse affect on a person’s ability to perform normal day to day activities”.
So, the Act may cover any children who have difficulties in any of the following areas…
Difficulties with mobility
Sight or hearing difficulties
A progressive condition such as multiple sclerosis
Learning disabilities
An ongoing medical condition such as epilepsy
WHAT DOES THE DDA DO?
If a school discriminates against a child for something that can be linked directly to the child's disability this would be against the DDA law. This could be in any of the following areas:
Admissions to a school
What a child is taught – the curriculum
School sports
The serving of school meals
How a child is taught – the teaching and learning
School trips
WHAT DOES DISCRIMINATION MEAN?
There are two types of discrimination:
1. LESS FAVOURABLE TREATMENT…
A school may be discriminating against a child if they are treating a child differently from others because of their disability and if they cannot justify what they are doing. For example if a child cannot go to their local school because of their disability or if they cannot go on a school trip because they have diabetes, then the school may be discriminating again those children.
Sometimes the school may be able to give good reason for treating a child “less favourably” if they can show that it did so because of “material and substantial” reasons. Some forms of selection might be allowed – if, for example, a school is a church school and requires all their students to be members of a certain religion.
2. FAILURE TO TAKE REASONABLE STEPS…
A school has to “take reasonable steps” to make sure that a child with a disability is not at a considerable disadvantage compared to other pupils at the school.
Examples of this may be if a child within a secondary school with dyslexia is told that he or she cannot have her teacher’s lesson notes and should take notes during the lessons like everyone else.
DOES THE DDA COVER ALL CHILDREN WITH SPECIAL EDUCATIONAL NEEDS?
The Education Act 1996 says that children have special educational needs if they have a learning difficulty that calls for special provisions to be made for them. There may be children who have disabilities and are covered by the DDA, but who may not have special educational needs. A child with severe asthma may not have special educational needs – he or she may be able to learn in exactly the same way as other children. However, because of their medical needs, they may have a disability under the DDA. So there may be some children who have extra help for their educational needs within schools, who may not be covered by the DDA.
The DDA also makes sure that schools also make adjustments for disabled parents. This means that disabled parents must be able to get into school, to have interpreters at parents’ meetings etc.
ACCESS TO SCHOOL BUILDINGS
The DDA legislation means that all schools will have to have plans to gradually improve access within the school for children who are disabled. The plans should include:
Improvements in accessing the subjects that are taught in school – the curriculum.
Physical improvements to the school to increase all children’s access to school buildings.
Improvements in how information is given to children. For example, it may be that information has to be available in Braille, audiotape or large print designs.
These plans should be made available to parents.
WHAT DO SCHOOLS NEED TO DO?
The DDA law says that schools will be expected to take “reasonable steps” to meet the needs of disabled children who might want to attend their schools. Schools have to think about a wider range of needs of children with different disabilities. Schools have to regularly review all their policies, practices and procedures that govern their work, to make sure that disabled children are not at a disadvantage because of their disability.
Schools do not have to make physical changes to their school buildings or provide specialist equipment or support. School changes such as these are covered by other pieces of legislation.
WHAT DO YOU DO IF YOU THINK YOUR CHILD MAY HAVE BEEN DISCRIMINATED AGAINST?
If you feel your child has been discriminated against, then you should first contact the Head Teacher. If you don’t feel that talking about the problem with the Head Teacher has answered your concerns then the school and the Local Education Authority will have a complaints procedure, which you could follow.
WHO ELSE COULD I TALK TO?
If you don’t feel that you have really dealt with the discrimination your child has faced you can ask the DISABILITY RIGHTS COMMISSION (DRC) for advice and information.
Their address is as follows:-
Disability Rights Commission (DRC) Freepost MID 02164 Stratford-upon-Avon, CV37 9BR
DRC Helpline: 0845 622 633
Email: tribunalequeries@sent.gsi.gov.uk