Resources




EQUIPMENT



Giraffe® incubator

This high-specification incubator can be electronically adjusted for height appropriate for someone standing giving attention to the baby or for someone sitting e.g. in a wheelchair. Access can be obtained from both sides and a sliding drawer pushes either way to give knee space whist sitting. Supplied by the worldwide company GE Health Care.


Contact details:

www.gehealthcare.com—opportunity is given on the website to contact the firm by email.


Height-adjustable couch

Supplied by:

Huntleigh Health Care Ltd, Akron Products Division



GENERAL RESOURCES


Disability, Pregnancy & Parenthood International (DPPi)

This organisation offers information and support for disabled parents and professionals in the UK to promote fulfilling parenthood. They produce a quarterly journal suitable for parents and professionals alike.


Contact details:

Tel: 020 7628 2811

Fax: 020 7628 2833

Textphone: 0800 018 9949






Joseph Rowntree Foundation

This organisation offers information and supports physically, sensory and learning disabled parents, and funds research.



Sunderland Support for Parents with Disabilities

A charitable organisation offering support and advocacy for disabled parents.


Contact details:

Tel: 0191 566 2158


RESOURCES FOR BLIND CLIENTS


Foundation Fighting Blindness—Retinitis pigmentosa



Royal National Institute for the Blind (RNIB)

This organisation offers practical solutions for people who are blind, fights for equal opportunities for blind people and funds research projects. They also supply reading material in Braille and talking books.


Contact details:

Helpline tel: 0845 766 9999



RESOURCES FOR DEAF CLIENTS


Baby monitors for deaf parents

These are vibrating baby alarms. Tomy has a digital vibrating baby monitor called Platinum Baby Monitor, which has a standard baby unit and portable parent unit with flashing lights and vibrating option which increases as the baby’s crying increases. Boardbug Baby and Child Monitor has a digital watch for parents and a wristband for a baby or toddler that transmits sound, flashes and bleeps. Both are available from John Lewis and other outlets or online at www.boardbug.com

‘Baby Monitors — information for deaf and hard of hearing people’ is available from the RNID website (see below).


British Deaf Association (BDA)

The BDA is the largest national organisation run by deaf people, for deaf people. BDA undertakes campaigning work and provides a range of vital services to the deaf community, including a helpline, publications, advocacy, and counselling, and youth services.


Contact details:

1–3 Worship Street

London, EC2A 2AB

Helpline tel: 0870 770 3300

Helpline textphone: 0800 6522 965

Fax: 020 7588 3527





BSL software in general practice

SignHealth is a new computer program that healthcare professionals in general practice can use to assist communication with BSL users. The DoH is purchasing this software for all PCTs from January 2006. For further information access www.signhealth.com


Chowdry S 2001 Deaf parents, gaps in services

This video was made by Sabina Chowdry in collaboration with Disability Pregnancy and Parenthood International (DPPi) (see below). It shows deaf women and their partners sharing their experiences of maternity services. (The video is not currently available to buy but check availability with your local health authority/hospital/university library.)


CoDPUK (Children of Deaf Parents UK)

CoDPUK aims to inform, mentor and work with deaf parents in the UK, in broadening the horizons of their children and nurturing self-esteem. The organisation provides support via social events, as well as a quarterly newsletter.


Contact details:

PO Box 3272

Maidenhead

Berkshire, SL6 4WW




Colville M 1985 Signs of a sexual nature. Forest Books, Coleford

This is available directly from Forest Books (see below) and gives illustrations and explanations of slang and educational sexual terms.


Deaf Parenting UK (DPUK)

Deaf Parenting UK’s objectives are to relieve all the needs of deaf parents (those who use BSL as their first language) and deaf parents-to-be in the UK. The organisation offers training and direct support services for deaf parents in partnership with several organisations across the UK.


Contact details:

Stephen Dering, Director

C/o Pertemps Mouzer, Fourth Floor, Charles House,

375 Kensington High Street, London, W14 8QH

Tel. 020 7471 6770

Textphone: 020 7471 6769

Fax: 020 7471 6768




Disability, Pregnancy & Parenthood International (DPPi)

This international organisation provides a UK-based information service for deaf and disabled people who are already parents or considering parenting, health and social care professionals and others concerned with issues affecting the lives of deaf and disabled parents. DPPi produces a number of information sheets, available in various formats, and publishes an international journal. There is an ideas forum on the DPPi website where parents can share ideas and experiences. Small items of parenting equipment are on display in the National Centre.




Contact details:

Becki Josiah

National Centre for Disabled Parents

Unit F9 89–93 Fonthill Road,

London, N4 3JH

Tel: 0800 0184730

Textphone: 0800 018 9949

Fax: 020 7263 6399



Disabled Parents Network (DPN) has published a series of briefings giving practical information and advice about disabled parenting: what the law says, getting needs assessed, planning care, direct payments, maternity services and support for new parents, making a complaint, advocacy advice and legal help.


Contact details:


DPPi have also produced an information pack for blind and visually impaired people, which has been available since March 2006 called ‘Having a baby resource pack’. It is available in large print, Braille, audio and Daisy, which offers standardisation of talking books. The pack is also available to healthcare professionals from:

Gill Lea-Wilson

Information Officer

DPPi

National Centre for Disabled Parents

Unit F9, 89/93 Fonthill Road

London, N4 3JH


Forest Books

This bookseller specialises in resources about deafness and deaf issues. They provide a range of books, videos, CD-ROMs and DVDs, including BSL resources, books on language development and children’s fiction featuring D/deaf characters.


Contact details:

The New Building, Ellwood Road,

Milkwall, Coleford,

Gloucestershire, GL16 7LE

Tel: 01594 833 858 (voice/minicom)

Fax: 01594 833446




Free E-Group for Deaf parents and professionals working with Deaf parents


Contact details:



Iqbal S 2004 Pregnancy and birth: a guide for deaf women. RNID and National Childbirth Trust, London

This book is aimed at deaf women whose first or preferred language is British Sign Language (BSL) and other deaf, deafened or hard-of-hearing women. The book is useful for professionals and deaf parents alike. It covers a wide range of topics including planning for a baby, pregnancy, birth and afterwards, including care for mother, baby and father. It also includes some advice on maternity and paternity rights for working parents and legislation such as the Disability Discrimination Act (DDA) 1995. Additionally it includes stories by mothers and fathers. Available from Forest Books (see above).



Royal Association for Deaf People (RAD)

RAD promotes the welfare and interests of deaf people. The organisation works in the areas of deaf community development, employment, families and children, youth, information, advice and advocacy, learning disability, mental health, sign language interpreting and training.


Contact details:

Head Office

Walsingham Road, Colchester

Essex, CO2 7BP

Tel: 01206 509509

Textphone: 01206 711260

Fax: 01206 769755




Royal National Institute for the Deaf (RNID)

RNID is a national membership charity, offering a range of services for deaf and hard-of-hearing people. The organisation provides information and support on all aspects of deafness, hearing loss and tinnitus. It is also involved in campaigning, training, providing equipment and undertaking medical and technical research.


Contact details:

19–23 Featherstone Street

London, EC1Y 8SL

Information line tel: 0808 808 0123

Information line textphone: 0808 808 9000

Fax: 020 7296 8199




Smith C 1999 Signs of health. Pocket guide to medical signs. Forest Books, Coleford

Pocket-sized book containing over 200 signs relating to health and medical procedures. Available from the Forest Bookshop (see above).


School B 1999 Signs for use in hospitals. Forest Books, Coleford

This booklet contains illustrations and explanations of signs useful in a hospital environment.


Sign & Bond

This baby signing company offers services to both deaf and hearing children and parents, concentrating on how to teach signing. They supply DVDs and offer a consultancy and training service to enhance children’s communication skills.


Contact details:

SMS: 07876 597974




Two Can Productions

The company publishes low-cost leaflets on pregnancy, relaxation classes and antenatal clinic, labour and birth. They are written in plain English with pictures and BSL illustrations. They offer information on communication, sign language interpreters (SLIs) and deaf awareness. Under the Disability Discrimination Act (DDA), deaf people are entitled to communication support whilst in hospital. This means qualified SLIs. Unfortunately SLIs are in short supply and need to be booked well in advance. Arranging a hospital account with the local interpreting agency will make this easier. However, there will be times when it is not possible to have a SLI present.


Contact details:

Tel/fax: 01332 366 083

Textphone: 01332 371 750




The Baring Foundation: www.baringfoundation.org.uk. This publication contains excellent information about resources available across the country for parents with a learning disability and for the professionals working with families. This is well referenced and up to date—a very useful document.


Down’s Syndrome Association

This organisation offers support, information and training for people with Down’s syndrome and for parents with a child with the condition.


Contact details:

Langdon Down Centre

2a Langdon Park,

Teddington, TW11 9PS

Tel: 0845 230 0372

Fax: 0845 230 0373




CHANGE organisation

This is a national organisation run by disabled people, including people with learning disabilities and people who are blind or deaf. They campaign and work for equal rights for disabled people.


Contact details:

Unit 19/20, Unity Business Centre,

26 Roundhay Road,

Leeds, LS7 1AB

Tel: 0113 243 0202

Fax: 0113 243 0220

Minicom: 0113 234 2225



Makaton

Sign language developed for people with learning disability who are deaf. Useful website: www.makaton.org


MENCAP

This leading national charity works with people with learning disabilities, their families and their carers both nationally and locally by offering support and information.


Contact details:

123 Golden Lane,

London, EC1 0RT

Tel: 020 7454 0454

Fax: 020 7696 5540




The Special Parenting Services in Cornwall



RESOURCES FOR CLIENTS WITH SPECIFIC PHYSICAL CONDITIONS


Spina bifida

Association for Spina Bifida and Hydrocephalus (ASBAH)


Contact details:

42 Park Road,

Peterborough, PE1 2UQ

Tel: 01733 555 988

Fax: 01733 555 985


Website: www.asbah.org


Achondroplasia

Little People of America


Contact details:

PO Box 745, Lubbock, TX 79408

888-LPA-2001

March of Dimes

Information about achondroplasia on www.marchofdimes.com


Medicinenet: Health and medical information produced by doctors




Cerebral palsy

Scope

This is a national organisation that used to be called The Spastic Society. They offer information and support for people with cerebral palsy, and information for professionals.


Contact details:

Cerebral palsy helpline: Mon.–Fri. 9 am–9 pm; weekends: 2 pm–6 pm

PO Box 833

Milton Keynes, MK12 5NY

Tel: 0808 800 3333



Muscular dystrophy

Muscular Dystrophy Association

This is an American voluntary health association offering information on and undertaking research into the condition. The useful internet website includes a diversity of information and insight into the lived experiences of people with the condition.



Multiple sclerosis (MS)

This is the UK’s largest charity supporting people with MS, their families and friends. They provide support from all perspectives, including practical aspects, on a national and local basis. They also fund research.


Contact details:

MS National Centre

372 Edgeware Road,

London, NW2 6ND

Tel: 020 8433 0700

National freephone: 0808 800 8000 Mon.–Fri. 9 am–9 pm




Spinal injury

Spinal Injury Network

This website provides information, including research data, fact sheets and a chat room.



CONTACTS FOR EXAMPLES OF GOOD PRACTICE

Liverpool

Liverpool Women’s Hospital

Jackie Rotheram, Disability Advisor

Tel: 0151 702 4012 Mon.–Thurs.

Text: 07717517172


Patricia Fairlamb, Midwife (special needs)

Tel: 01908 660033 × 3162



References


R Bramwell, F Harrington, J Harris, Deaf women: informed choice, policy and legislation, British Journal of Midwifery 8 (9) (2000) 545–548.

B Brown, The introduction of a special needs advisor, British Journal of Midwifery 9 (6) (2001) 348–351.

J Brown, Tailor-made maternity services, Disability Pregnancy and Parenthood International (DPPi) 42 (2003) 8–9.

MJ Campion, An inclusive philosophy of care, Disability Pregnancy and Parenthood International (DPPi) 11 (1995) 3–5.

MJ Campion, Disabled women and maternity services, Modern Midwife 7 (3) (1997) 23–25.

EM Carty, Disability and childbirth meeting the challenges, Canadian Medical Association 159 (1998) 4.

EM Carty, T Cohrine, A Holbrook, Supporting the pregnant woman who is disabled: guidelines for professionals, Disability Pregnancy and Parenthood International (DPPi) 3 (1993) 8–11.

Chowdry S, 2001 Deaf parenting: raising a child—an initial study on deaf parents with children aged0–11 years old in San Francisco, USA. Unpublished dissertation. To learn more about this research contact: deafparents@yahoo.co.uk or contact DPUK.

Department of Health Publications, 2000 A jigsaw of services: inspection of services to support disabled adults in their parenting role. Online. Available: http://www.dh.gov.uk

Down’s Syndrome Association Learning About Learning Disabilities and Health; what we know about parenting training. Online. Available: http://www.intellectualdisability.info 16 February 2006

D Dunn, Sexual health, In: (Editors: J Thompson, S Pickering) Meeting the health needs of people who have a learning disability (2001) Bailliere Tindall, London, pp. 211–234.

E Emerson, C Hatton, Deinstitutionalisation. Tizard Learning Disability Review, Brighton, Feb. 10 (1) (2005) 36.

S French, The attitudes of health professionals towards disabled people, In: (Editor: G Hales) Beyond disability, towards an enabling society (1996) Sage, London, pp. 151–163.

J Galea, J Butler, T Iacono, D Leighton, The assessment of sexual knowledge in people with intellectual disability, Journal of Intellectual and Developmental Disability 29 (4) (2004) 350–365.

M Goodman, Pregnant and disabled?. Don’t assume the professionals will understand, Professional Care of Mother and Child Nov/Dec (1994) 227–228.

Goodman M, 1996 Action on disability and maternity: a report of progress towards good practice in the purchase and provision of maternity services for disabled women and their partners. Maternity Alliance London available from NCT

B Josiah, Hearing the needs of deaf mothersto-be, The Practising Midwife 7 (3) (2004) 22–23.

J Kelsall, She can lip read, she’ll be all right: improving maternity care for the deaf and hearing impaired, Midwifery 8 (1992) 178–183.

N Korman, H Glennester, In: Hospital closure (1990) Open University Press, Milton Keynes.

Maternity Alliance, Listen to us for a change: a charter for disabled parents and parents to be, In: Maternity group disability working group pack (1994) Maternity Alliance, London.

MENCAP, 2006 Mencap calls for better supports for parents with a learning difficulty. Online. Available: http://www.mencap.org.uk 27 February 2006

S McKay Moffat, Meeting the needs of women with disabilities, The Practising Midwife 6 (7) (2003) 12–15.

S McKay-Moffat, C Cunningham, Services for women with disabilities: mothers’ and midwives’ experiences, British Journal of Midwifery 14 (8) (2006) 472–477.

A Middleton, J Hewison, R Mueller, Prenatal diagnosis for inherited deafness-what is the potential demand? Journal of Genetic Counseling 10 (2) (2001) 121–131.

This study assessed the potential uptake of prenatal diagnosis for inherited deafness. It also documented the opinions of deaf and hearing participants towards prenatal testing and termination of pregnancy.

NHS Executive, Once a day; one or more people with learning disabilities are likely to be in contact with your primacy health care team, In: How can you help them? (1999) Department of Health, Weatherby.

P Oakes, Sexuality and personal relationships, In: (Editor: B Gates) Learning disabilities; towards inclusion 4th edn. (2003) Churchill Livingstone, Edinburgh, pp. 455–470.

J O’Hara, Parents with learning disabilities; a study of gender and cultural perspectives in East London. British Institute of Learning Disabilities Publications, British Journal of Learning Disabilities 31 (2003) 18–24.

J Rogers, In: The disabled woman’s guide to pregnancy and birth (2005) Demos Medical Publishing, New York.

CR Ronai, On loving and hating my mentally retarded mother, Mental Retardation 35 (6) (1997) 417–432.

J Rotheram, Care of the disabled woman during pregnancy, Nursing Standard 4 (10) (1989) 36–39.

J Rotheram, Caring for the minority within the minority, British Journal Midwifery 6 (9) (1998) 596.

J Rotheram, Maternity needs of disabled women, Disability Pregnancy and Parenthood International (DPPi) 40 (2002) 10–11.

Royal College of Physicians (RCOP), In: Disabled people using hospitals: a charter and guidelines (1998) RCOP, London.

J Ryan, F Thomas, In: The politics of mental handicap (1991) Free Association Books, London.

Shackle M, 1994 I thought I was the only one. A report of a conference

Disabled people, pregnancy and early parenthood. Part of the Maternity Alliance Working Group Pack Maternity Alliance London

T Shakespeare, K Gillespie-Sells, D Davies, In: The sexual politics of disability, untold desires (1996) Cassell, London.

Only gold members can continue reading. Log In or Register to continue

Related posts:

  1. The role of the midwife in maternity service provision
  2. The interaction between specific conditions and the childbirth continuum
  3. Women with intellectual disabilities
  4. Sensory impairment

Stay updated, free articles. Join our Telegram channel
Tags:
Aug 27, 2016 | Posted by in PEDIATRICS | Comments Off on Resources

Full access? Get Clinical Tree
Get Clinical Tree app for offline access