Angelman Syndrome - NT resources

Northern Territory of Australia Disability resources

Angelman Syndrome Information

Contact:-

	Angelman Syndrome Association of South Australia P.O. Box 2025 South Plympton SA 5038 Phone / Fax (08) 8371 4255 Email: simsclan@cobweb.com.au
	Angelman Syndrome Association PO Box 554 Sutherland NSW Australia 2232 Phone: (02) 9520 5857 Email: kevink@angelmansyndrome.org

The clinic can provide information to families about the different aspects of Angelman Syndrome and is compiling a database of information relevant to Angelman Syndrome in Australia. Advice can be obtained about the different medical problems covered by Angelman Syndrome and where to go to get further help with specific medical problems.

Medical
Most medical problems can be handled initially by your family doctor or paediatrician who may refer you to a specialist for further treatment and advice.

Below is a list of some of the medical problems that you may experience with a child with Angelman Syndrome and the medical specialty that caters for that area.

The advice given here is not a substitute for the proper care provided by a family doctor or specialist.

Early childhood (0-2 years)

Poor Feeding or Suckling	- your Family Doctor who may refer you on to a Paediatrician
Vomiting or Reflux	- your Family Doctor who may refer you on to a Gastroentorologist
Weight Loss	- your Family Doctor who will refer you on to a Gastroentorologist

Pre School (2-5 years)

Epilepsy or Fits or Seizures	- your Family Doctor who may refer you on to a Neurologist for EEG's and monitoring of the progress of AED's (Anti Epileptic Drugs)
Eye Problems or Strabismus	- your Family Doctor who may refer you on to an Eye Specialist

Area/Location

Name

Phone/
Mobile

Facsimile
Email
Internet
Address

Casuarina

Community Health Paediatric Team

CHPT Manager
1st Floor
Casuarina Plaza
258 Trower Road
Casuarina NT 0810

Provides specialist paediatric services to families of babies and children of preschool age who have mild to moderate developmental delays.

(08) 8922 7283

Fax: (08) 8922 7399

Email: jane.walsh@nt.gov.au

Primary School Years (5-13 years)

High School Years (13-18 years)

Salivary Duct Treatment

- your Family Doctor who may refer you on to an Ear Nose and Throat Specialist who specialises in this treatment.

Adulthood (19 years onwards)

Medicines

Sleep Disorders

Eating Disorders

Behaviour Disorders - Mood Disorders

The advice given here is not a substitute for the proper care provided by a family doctor or specialist.

For assistance that does not involve the use of medication
Assistance and program support in the form of a behaviour intervention program can be provided by a Disability Resource Unit, which is part of the Territory Health Services (Aged & Disability Services). The team is made up of specialists such as psychologists, educators and program officers.

Area/Location

Name

Phone/
Mobile

Facsimile
Email
Internet
Address

Casuarina

Disability Resource Unit

Manager
1st Floor
Casuarina Plaza
258 Trower Road
Casuarina NT 0810

(08) 8922 7424

Fax: (08) 8922 482

Email: jane.walsh@nt.gov.au

For treatment that involves the use of medication
Please consult a psychiatrist who will monitor the effect of medications used to assist in behaviour management and mood disorders.

The brand names below are the names used in Australia.
Click on the links to view a copy of detailed information about:

Aropax (known as Paxil in the U.S.)
Melleril
Prozac
Risperdal
Ritalin

Therapy & Equipment

Area/Location	Company Name	Phone/ Mobile	Facsimile Email Internet Address
	Plega Healthcare	1800 648 648	http://www.plega.com.au/
Berrimah	Mobility & Rehabilitation Services Unit 7/ 1808 Hardy Rd Berrimah NT 0828	(08) 8932 1900
Brinkin	Top End Disability Services 43 Claymore Cct Brinkin NT 0810	(08) 8945 7089
Casuarina	Deafness Association Of The N.T. Inc. Shop 14 Casuarina Plz Casuarina NT 0810	(08) 8945 1880 TTY: 08 8945 2016	FAX: 08 8945 1880
	Specialist Adult Health Services Manager SAHS 1st Floor Casuarina Plaza 58 Trower Road Casuarina NT 0810	(08) 8922 7283	Fax: (08) 8922 7399
	Territory Independence and Mobility Equipment Scheme TIME Scheme Co-ordinator 1st floor Casuarina Plaza 258 Trower Road Casuarina NT 0810	(08) 8922 7244	Fax: (08) 8922 7399
Coconut Grove	Compatible Living Supplies Unit 2/ 10 Travers St Coconut Grove NT 0810	(08) 8948 5211
	Territory Surgical Supplies Unit 7/ 9 Delatour St Coconut Grove NT 0810	(08) 8948 0432
Darwin	Darwin Psychology Services 43 Cahill Crs Nakara NT 0810	(08) 8945 9878
	Master Lifts Darwin Darwin NT 0800	(08) 8981 2250
Parap	Northern Territory Vision Resources 3/ 3 Vickers St Parap NT 820	(08) 8981 5488
	Regency Fitness Equipment 49 Parap Rd Parap NT 820	(08) 8941 3435
Tiwi	Seating Equipment and Technology Service (SEAT) Building 15 Royal Darwin Hospital Rocklands Drive Tiwi NT 0810	(08) 8922 8228	Fax: (08) 8922 8910
	Territory Health Services - Prosthetic and Orthotic Dept Lower Ground Floor Royal Darwin Hospital Rocklands Drive Tiwi NT 0810	(08) 8922 8241	Fax: (08) 8922 8251
	Territory Rehabilitation Equipment Specialist Unit 7 Tiwi Medical Centre Tiwi NT 810	(08) 8927 7833

Government Agencies

Area/Location	Name	Phone/ Mobile	Facsimile Email Internet Address
Casuarina	Disability Information Officers 1st Floor Casuarina Plaza 258 Trower Road Casuarina NT 0810	(08) 8922 7048 (08) 8922 7253 (08) 8922 7154	Fax: (08) 8922 7482 Email: disabilityinformationofficers@nt.gov.au
	Disability Resource Unit Manager 1st Floor Casuarina Plaza 258 Trower Road Casuarina NT 0810	(08) 8922 7424	Fax: (08) 8922 482 Email: jane.walsh@nt.gov.au
	Family and Community Services Bureau of Meteorology Building Cascom Centre 17 Scaturchio Street Casuarina NT 0810	(08) 8920 8900	Fax: (08) 8920 8999 http://www.facs.gov.au/
	Aged & Disability Services Program Manager 2nd floor Casuarina Plaza 258 Trower Road Casuarina NT 0810	(08) 8922 7123	Fax: (08) 8922 7165 http://www.nt.gov.au/health/ comm_svs/aged_dis_ccs/ aged_dis_ccs.shtml
Darwin	Anti Discrimination Commission of Northern Territory Level 7 9 - 11 Cavenagh Street Darwin NT 0801	(08) 8999 1444 TTY: (08) 8999 1466 Freecall: 1800 813 846	Fax: (08) 8981 3812 Email: Administration.ADC@nt.gov.au http://www.nt.gov.au/adc /index800.html
	Office of Adult Guardianship Health House 87 Mitchell St Darwin PO Box 40596 Casuarina NT 0811	(08) 8999 2400	Fax (08) 8999 2700 http://www.nt.gov.au/health/org_supp/ performance_audit/adult_guard/ guardianship.shtml
	Commonwealth Carelink Centre Frontier Services 144 Smith Street Darwin NT 0800 Disability Information Database Service	1800 052 222	http://www.health.gov.au/acc/cclinkc
	Disabled Parking Concessions Darwin City Council Civic Centre Harry Chan Avenue Darwin NT 0800	(08) 8982 2511
	Disability Advisory Committee Darwin City Council Harry Chan Avenue Darwin NT 0801	(08) 8982 2560 Disability Hotline: (08) 8982 2622 TTY Phone: (08) 8982 2577	Email: t.vine-bromley@darcity.nt.gov.au
	Taxi Subsidy Scheme - Northern Territory Darwin NT 0800	(08) 8922 7253 (08) 8922 7154 (08) 8922 7048

Advocacy

If you would like help getting the standard of service that you feel is reasonable or access to a service these people may be able to help you.

Area/Location

Name

Phone/
Mobile

Facsimile
Email
Internet
Address

Darwin

Disability Rights Team

8 Manton St
Darwin
NT 800

(08) 8982 1111

Nightcliff

Integrated DisAbility Action

No. 4 Nightcliff Community Centre
18 Bauhina St
Nightcliff
NT 0810

P.O Box 797
Nightcliff
NT 0814

Tel/Fax
(08)8948 5400

Email: ida@tpg.com.au

http://www2.tpg.com.au/users/
ida/index.html

Legal Services

If you need advice in relation to the legal rights of someone with Angelman Syndrome these agencies may be able to help you.

Area/Location

Name

Phone/
Mobile

Facsimile
Email
Internet
Address

Darwin

Darwin Community Legal Service

PO Box 3180
Darwin
NT 0801

(08) 8941 3394

(08) 8941 3773

Email: darwincls@taunet.net.au

http://www1.taunet.net.au/
darwincls/main.html

Community Organisations

Area/Location	Company Name	Phone/ Mobile	Facsimile Email Internet Address
Casuarina	ACROD NT Division 247 Trower Rd Casuarina NT 811	(08) 8945 9054	Fax: (08) 8945 2185 Email: acrodnt@acrod.org.au
Coconut Grove	Family Planning Services of NT Head Office Unit 2, The Clock Tower Dick Ward Drive Trower Road Coconut Grove NT 0810	(08) 8948 0144	Fax: (08) 8948 0626 E-mail: fpnt@ozemail.com.au
Darwin	Disabled Sports Assoc (NT) 65 Smith Street Darwin NT 0800	(08) 8942 2637	Fax: (08) 8942 2638 Email: dsant@arafura.net.au
Malak	Support Group for Parents of Children With Disabilities 19 Bayfield Street Malak NT 0812	(08) 8948 4417
Nightcliff	Sponsor Family Association 18 Bauhinia Street Nightcliff NT 0810	(08) 8948 0962 mobile: 0408 086 840	Fax: (08) 8948 0975 Email: ssadwn@topend.com.au
Parap	Guide Dogs Association Of S.A. & N.T. Incorporated 3/ 3 Vickers St Parap NT 820	(08) 8981 5488
Rapid Creek	Down Syndrome Association Shop 16 Rapid Creek Shopping Complex Rapid Creek NT 810	(08) 8985 6222
	Kidsafe Shop 20 Rapid Creek Shopping Centre Trower Road Rapid Creek NT 0810	(08) 8985 1085	Fax: (08) 8985 1025
Sanderson	Northern Territory Council on Intellectual Disability (NTCID) PO Box 327 Sanderson NT 0812
Winnellie	N.T. Carers Association 17 Winngate Centre/ Sadgrove Crs Winnellie NT 820	1800 242 636	http://www.ntcarers.asn.au/

Respite

Area/Location	Company Name	Phone/ Mobile	Facsimile Email Internet Address
Malak	Australian Red Cross Society (NT Division) Sanderson House 84 Malak Crescent Malak NT 0812	(08) 8945 3588	Fax: (08) 8945 3150
Wagaman	Darwin Family Day Care Director 29 Wagaman Terrace Wagaman NT 0810 Priority of Access applies: · Work / study / training · Children/parent with a disability (respite care)	(08) 8945 2945	Fax: (08) 8945 2989
Winnellie	Carpentaria Disability Services Inc Suite 9, 20 Catterthun Street Winnellie NT 0820	(08) 8945 4977	Fax: (08) 8947 4833 Email: maneiscds@carpenteria.org.au http://www.carpentaria.org.au/

Accommodation Services

Area/Location	Company Name	Phone/ Mobile	Facsimile Email Internet Address
Casuarina	Darwin Accommodation Service 247 Trower Rd Casuarina NT 810	(08) 8945 2185	Fax: (08) 8945 2185 Email: acrodnt@acrod.org.au
	H P A Incorporated 247 Trower Rd Casuarina NT 810	0408 893 872
Darwin	Carpentaria Disability Services Inc Support Services 45 Henbury Avenue Darwin NT 810	(08) 8945 4977	Fax (08) 8945 0518 Email: maneiscds@carpenteria.org.au http://www.carpentaria.org.au/
	Somerville Community Services Incorporated 3 Bonson Terrace Moulden NT 08	(08) 8932 6111	Fax: (08) 8932 6441 Email: scs@somerville.org.au http://www.somerville.org.au/
Stuart Park	H P A Incorporated 40 Bishop St Stuart Park NT 820	(08) 8941 0744
Wagaman	Somerville Community Services Incorporated 147 Lee Point Rd Wagaman NT 810	(08) 8945 1533	Fax: (08) 8927 9298 Email: scs@somerville.org.au http://www.somerville.org.au/
Winnellie	H P A Incorporated 1741 Albatross St Winnellie NT 820	(08) 8941 0015 (08) 8947 4122

Day Programs

Area/Location

Company Name

Phone/
Mobile

Facsimile
Email
Internet
Address

Darwin

Carpentaria Disability Services Inc
Support Services

45 Henbury Avenue
Darwin
NT 810

(08) 8945 4977

Fax (08) 8945 0518

Email: maneiscds@carpenteria.org.au

http://www.carpentaria.org.au/

Supported Employment

Area/Location	Company Name	Phone/ Mobile	Facsimile Email Internet Address
Nightcliff	Project Employment 17 Chapman Rd Nightcliff NT 0810	(08) 8948 1100	Fax: (08) 8948 1110 Email: pe@octa4.net.au www.pe.citysearch.com.au
Winnellie	Calico Connection Unit 7, Winngate Complex Sadgroves Crs Winnellie NT 820	(08) 8947 1417
	Kokoda Industries Albatross St Winnellie NT 820	(08) 8947 0681
	Shadow Prints Unit 1A 390 Stuart Highway Winnellie NT 0820	(08) 8947 2922	Fax: (08) 8947 2933 Email: joblink@msn.com.au

Early Intervention

Area/Location

Name

Phone

Facsimile
Email
Internet
Address

Darwin

Carpentaria Disablity Services Inc
Early Intervention Services

3-5 Willeroo Road
Darwin
NT 810

(08) 8945 4977

Fax (08) 8927 9054

Email: maneiscds@carpenteria.org.au

http://www.carpentaria.org.au/

Malak

Early Childhood Intervention

Malak Primary School
45 Malak Crescent
Malak
NT 0812

(08) 8945 6260

Fax: (08) 8945 6293

Home and Community Care (HACCS) - Maintenance &
Modifications - Community Options

Area/Location

Name

Phone

Facsimile
Email
Internet
Address

Casuarina

Transitional Care Project

Coordinator

1st Floor
Casuarina Plaza
258 Trower Road
Casuarina
NT 0810

(08) 8922 7091

(08) 8922 7520

Fax: (08) 8922 7399

Tiwi

Darriba Nurri Aboriginal Community Options Project

Cnr Willeroo St/Henbury Ave
Tiwi
NT 0810

(08) 8927 7259

Recreation Support

Area/Location	Name	Phone	Facsimile Email Internet Address
Darwin	Total Recreation Unit 2/ 98 Wood St Darwin NT 800	(08) 8981 3686	Fax: 8981 3616
Nightcliff	Camp Quality PO Box 796 Nightcliff NT 0814	(08) 8985 4433	Fax: (08) 8985 4411 Email: campqualitynt@octa4.net.au
Rapid Creek	Children's Inclusion Support Services (CISS) Disability Consultant Shop 11 Rapid Creek Village Rapid Creek NT 0810	(08) 8948 0209	Fax: (08) 8948 0802 Email: aeca.inclusion@octa4.net.au
Winnellie	Lifestyle Options - Carpentaria Disability Services Inc Suite 9, 20 Catterthun Street Winnellie NT 0820	(08) 8945 4977	Fax: (08) 8947 4833 Email: maneiscds@carpenteria.org.au http://www.carpentaria.org.au/
	Music Therapy Service - NT Carers Assoc Unit 17/41 Wingate Centre Sadgroves Crescent Winnellie NT 0820	(08) 8947 3877 Freecall: 1800 242 636	Fax: (08) 8947 3888 Email: ineke@ntcarers.asn.au

Special Education

Area/Location

Name

Phone

Facsimile
Email
Internet
Address

Wanguri

Henbury School

4 Henbury Avenue
Wanguri
NT 0810

(08) 8927 5088

Fax: (08) 8927 3367

Email: admin@henbury.net.edu.au

Community Transport

Area/Location	Position/Title	Phone	Facsimile Email Internet Address

Ungrouped

Area/Location	Company Name	Phone/ Mobile	Facsimile Email Internet Address
Darwin	Drivability P O Box 1800 Darwin NT 0801	(08) 8981 9963
Leanyer	Focus 'A' Bility Leanyer NT 0812	(08) 8927 4554
Nightcliff	Chelsea's Home & Family Care 81 Nightcliff Rd Nightcliff NT 0810	(08) 8948 2888
	Sponsor Family Association Inc 18 Bauhinia St Nightcliff NT 0810	(08) 8948 0962

Last Updated: 10 August, 2002

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Northern Territory Council on Intellectual Disability (NTCID)