Angelman Syndrome Information
Contact:-
Please note that the contents of this page have not been vetted by Keith and Kerry and they do not personally endorse any of the agencies listed. |
Kerry O'Kane and Keith
Bradley ASA Vice President for ACT Email: bradkane@bigpond.com |
|
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 progressof AED's (Anti Epileptic Drugs) |
| Eye Problems or Strabismus | - your Family Doctor who may refer you on to an Eye Specialist |
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)
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 Psychologist or program support team which is
part of the Department of Health, Housing and
Community Care. The team is generally made up of specialists
such as psychologists, educators and program officers.
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
Name |
Equipment |
Phone |
Facsimile
|
| Access & Mobility
16
Shenton Crs |
(02) 6288 8816 | ||
| ACT Community Care Northside Regional Office - |
Multidisciplinary Allied Health Services are professional and specialist services provided to an individual with a disability, their family and carers. These services are designed to improve and maintain the functional skills and the psychosocial well being of the individual. |
(02) 6207 1121 | fax (02) 6205
1620 E-mail communitycare@act.gov.au |
| ACT Community Care Southside Regional Office - |
Multidisciplinary Allied Health Services are professional and specialist services provided to an individual with a disability, their family and carers. These services are designed to improve and maintain the functional skills and the psychosocial well being of the individual. |
(02) 6207 1360 | fax (02) 6205
1635 E-mail communitycare@act.gov.au |
|
Level One, |
The ACT Equipment Scheme offers funding to assist people with long term disabilities to obtain and maintain equipment to live at home in the community. | (02) 6244 2580 | http://www.communitycare.act.gov.au/ comm_rehab/equipment_scheme.html |
| ACT Equipment Loans Scheme Level One, Building 3 |
ACT Community Care's Equipment Loans Scheme offers short term loan of
equipment used to aid recovery or home care. The available equipment ranges from
wheelchairs and walking aids to electric hoists and shower chairs. A health professional will arrange a prescription for you to use this service. |
(02) 6244 2580 | http://www.communitycare.act.gov.au/ comm_rehab/equipment_scheme.html |
| Dickson Health Centre 111 Dickson Pl |
Podiatry, physiotherapy | (02) 6205-1025 | Fax: (02) 6205-1020 |
| Easier Living Services 11 Bulloo Pl |
(02) 6255 5565 | ||
| Independent
Living Centre 24 Parkinson
St |
Therapeutic Aids |
(02) 6205 1900 | (02) 6205 1906 Email: ILCACT@act.gov.au www.communitycare.act.gov.au/ |
| Master Lifts Canberra |
(02) 6262 8090 | ||
| Master Lifts Canberra Canberra City |
(02) 6262 8090 | ||
| Mobility Improvements 5 Werribee Crs |
0418 625 977 | ||
| Nappy Factory Chisholm |
(02) 6292 2749 | ||
| Noah's Ark Resource Centre Bangalay Crs |
(02) 6287 1117 | ||
| Orthotic Association Canberra Hospital |
(02) 6244 2475 | http://www.communitycare.act.gov.au/ treatment_support/prosthetic.html |
|
| Plega Healthcare Canberra |
1800 648 648 | http://www.plega.com.au/home.htm | |
| Progressive Controls Pty Ltd 129 Gladstone St |
(02) 6280 4655 | ||
| Progressive Orthopaedics Pty
Ltd Suite
4, |
(02) 6255 1988 | ||
| Ramp & Rail Constructions 5 Werribee Crs |
(02) 6286 2914 | ||
| Scooters Australia ACT 11 Pitcairn St |
(02) 6258 1111 | ||
| Southern Electric Scooters Pty
Ltd 11 Pitcairn St |
(02) 6258 1111 | ||
| Speld ACT Inc
The Pearce Centre |
(02) 6290 1984 | ||
| Surgical Orthopaedic Services Unit 4 & 5, |
Therapeutic Aids |
(02) 6280 7244 | |
| Technical Aid To Disabled (TADACT) PO Box 3827 |
Therapeutic aids |
(02) 6287 4290 | www.technicalaidact.org.au |
Name |
Phone |
Facsimile |
| ACT Carer Resource Centre Carers Association of the ACT support provided throughout the ACT. |
(02)
6288 9722 1800 242 636 |
fax: 02 6288 6909 email: resource@carersact.asn.au |
| Office of the Community Advocate | (02) 6207 0707 | Email: oca@act.gov.au |
| ACT Community Care 1 Moore Street |
(02) 6205 5111 | E-mail communitycare@act.gov.au |
| ACT Human Rights Office Level
4 |
(02) 6207 0576 | Fax: (02) 6207 0587 Email: human.rights@act.gov.au |
| Australian
Disability Consultative Council Floor 1, GPO Box 9848 |
(02) 6289 8764 Freecall: TTY: |
Fax: (02) 6289 8261 |
| Child Health and Development Service - Northside Maribyrnong Primary School |
(02) 6205-9009 | Fax: (02) 6205-9011 |
| Commonwealth Carelink
Centre Develin's City Pharmacy Disability Information Database Service |
1800 052 222 | http://www.health.gov.au/acc/cclinkc |
| Commonwealth Carelink
Centre Tuggeranong Capital Chemist Disability Information Database Service |
1800 052 222 | http://www.health.gov.au/acc/cclinkc |
| Community
and Health Services Complaints Commissioner 5th
Fl |
(02) 6205-2222 | Fax: (02)
6207-1034 Email: health.complaints@act.gov.au |
| Disabled Parking
Permits Motor Vehicle Registry Postal Address: |
(02) 6207-7000 | Fax: (02) 6207-7120 |
| Family Planning ACT Health Promotion Centre |
(02) 6247 3077 (02) 6247 3018 |
Fax: (02) 6257 5710 E-mail: fpact@familyplanningact.org.au |
| Department of
Health, Housing and Community Care Level
2, |
(02) 6205 5111 | (02) 6207
5775 HealthACT@act.gov.au |
| Mental Health and Guardianship Tribunal ACT Magistrates Court |
(02) 6217-4277 | Fax: (02) 6217-4505 Email: magistrates.court@act.gov.au |
| National Information Communication
Awareness Network (NICAN) Suite 4, |
(02) 6285 3713 TTY Freecall: |
Fax: (02) 6285 3714 |
| Northside Community
Service Majura Community Centre |
(02) 6257-2255 | Fax: (02) 6257-5993 Email: headoffice@northside.asn.au |
| Public
Trustees Office Lvl 4 |
(02) 6207-9800 | Fax: (02) 6207-9811 Email: publictrustee@act.gov.au |
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.
Name |
Phone |
Facsimile |
| ACT
Disability Aged & Carer Advocacy Service 2 Atherton St PO Box 144 |
(02) 6242
5060 TTY: |
Fax: (02)
6242 5063 Email: adacas@spirit.com.au |
| Citizen Advocacy - ACT PO Box 1044, |
(02) 6253
4818 (02) 6253 4814 |
(02) 6253
4811 Email: caact@alphalink.com.au |
| DPI - Disabed Person's
Inititiative PO Box
717, |
( 02) 6290 1984 | Fax 02) 6286
4475 Email: denniss@dynamite.com.au |
| Weston Creek
Community Service Weston
Creek Community Centre |
(02) 6288 4744 | Fax: (02) 6288 4241 |
Legal Services
If you need advice in relation to the legal rights of someone with
Angelman Syndrome these agencies may be able to hlep you.
Name |
Phone |
Facsimile |
| Disability Discrimination Legal Service Havelock House PO Box 337 |
(02) 6257-2931 | Fax: 02 6257
4801 Email: wrlc@ozemail.com.au |
| Area/Location | Company Name | Phone/
Mobile |
Facsimile
Internet Address |
| Disability Information & Communication Exchange (DICE) | (02)
6280 8858 |
Fax:
(02) 6280 8868 Email:ncid@dice.org.au |
|
| Braddon | Deafness Forum of Australia 218 Northbourne Ave |
(02) 6262-7808 | Fax: (02) 6262-7810 Email: deaforum@ozemail.com.au |
| Disability
& Disadvantaged in the Arts (ACT) Inc Gorman House Arts Centre, |
(02) 6230 6505 | (02) 6247
7739 Email: dadaact@actonline.com.au |
|
| Calwell | Autism
Associaton of The ACT Inc Calwell Neighbourhood Centre |
(02) 6291 1887 | |
| Canberra | Canberra Blind Society
Room G6, |
(02) 6247
4580 (02) 6247 2927 |
Fax: (02) 6247-2927 Email: canblind@effect.net.au |
| Defence for
Children International 19 Bunda St |
(02) 6257 6422 | ||
| Deakin | ACROD National Office ACROD House PO Box 60 |
Ph/TTY: (02) 6282 4333 |
Fax:
02 6281 3488 E-mail: acrodnat@acrod.org.au |
| ACROD, ACT
Division PO Box 146 |
(02) 6285 2440 TTY: |
Fax: (02) 6285 2440 E-mail: asimmons@acrod.org.au |
|
| Hartley Lifecare Incorporated
(formerly ACT Society for the Physically Handicapped Inc) 45 Kent St |
(02) 6282 4411 | Fax:
(02) 6282 5444 Email: harleylifecare@apex.net.au |
|
| Guide Dog
Association of New South Wales & ACT 10 Geils Crt |
(02) 6285 2988 | ||
| Nican Inc 33 Thesiger Cct |
(02) 6285 3713 | http://www.nican.com.au/NICAN.html | |
| Dickson | The Spastic Centre of the ACT and Southern Districts Suite 6 |
(02) 6257-6089 | Fax: (02) 6257-7585 Email: tscact@tpg.com.au |
| Koomarri
Ex-Students Club 45 Stockdale St |
(02) 6248-0558 | ||
| Women with
Disabilities ACT 10 Lowrie St |
(02) 6257 6436 | ||
| Fyshwick | Queanbeyan
& ACT For You & Me Inc Cnr Fairbairn & Pialligo Aves |
(02) 6230 5125 | |
| National Council on
Intellectual Disability (NCID) Unit 7 Postal Address: |
(02)
6280 8858 |
Fax:
(02) 6280 8868 Email:ncid@dice.org.au |
|
| Hackett | Paraquad
100 Maitland St |
(02) 6248 8433 | |
| Holder | Epilepsy
Association (ACT) Inc 27 Mulley St |
(02) 6287 4555 | |
| ACT Deafness
Resources Centre Grant Cameron
Community Centre |
(02) 6287
4393 TTY: |
||
| Royal
Blind Society Grant Cameron
Community Centre |
(02) 6287 4377 | ||
| Mawson | Community
Connections Unit 1
34 Mawson Pl |
(02) 6290 0911 | |
| Pearce | Deafness
Resource Centre A.C.T. Inc (TTY) Pearce Centre |
(02) 6290 1329 | |
| Kidsafe Building 2 |
(02) 6290 2244 | Fax: (02)
6290 2241 http://www.greenweb.com.au/kidsafe/ |
|
| People First ACT
Inc Rm 17 and 18 |
(02) 6286 9422 | Fax: (02) 6286 9424 Email: peopleone@dice.org.au |
|
| Tuggeranong | Canberra Deaf
Childrens' Association PO Box 2291 |
(02) 6287 4393 | Fax: (02) 6292 5325 Email: cdca3@bigpond.com |
| Weston | Carers Association Of The ACT Inc Minns Pl |
(02) 6288 9722 | Fax: 02 6288 6909 email: carers@carersact.asn.au |
| Weston Creek | Weston Creek
Community Service Weston
Creek Community Centre |
(02) 6288 4744 | Fax: (02) 6288 4241 |
| Woden | Woden
Community Service Inc. Corinna St |
(02) 6282 2644 | Fax: (02) 6285 1322 |
| Yarralumla | Canberra Deaf
Children's Association Old
Yarralumla Primary School |
(02) 6282 3671 |
| Area/Location | Company Name | Phone/ Mobile |
Facsimile Internet Address |
| ACT Community Care Northside Regional Office - Respite services give people with a disability, their families and carers the chance to have a regular short break from each other. Clients stay at one of the Respite facilities, where their usual lifestyle is supported and maintained. |
(02) 6207 1121 | fax (02) 6205
1620 E-mail communitycare@act.gov.au |
|
| ACT Community Care Southside Regional Office - Respite services give people with a disability, their families and carers the chance to have a regular short break from each other. Clients stay at one of the Respite facilities, where their usual lifestyle is supported and maintained. |
(02) 6207 1360 | fax (02) 6205
1635 E-mail communitycare@act.gov.au |
|
| Charnwood | Cooinda
Cottage Occasional Child Care Centre Charnwood Pl |
(02) 6259 1880 | |
| Woden | Community Supported
Respite Woden Community Service |
(02) 6282-2644 | Fax: (02)
6285-1322 Email: wcsadmin@wcs.org.au |
| Area/Location | Company Name | Phone/
Mobile |
Facsimile
Internet Address |
| ACT Community Care Northside Regional Office - |
(02) 6207 1121 | fax (02) 6205
1620 E-mail communitycare@act.gov.au |
|
| ACT Community Care Southside Regional Office |
(02) 6207 1360 | fax (02) 6205
1635 E-mail communitycare@act.gov.au |
|
| Deakin | Focus ACT 5/8 Phipps Cl |
(02) 6282-9422 | Fax: (02) 6282-9420 Email: focus@actonline.com.au |
| Hackett | Transitional
Accommodation Services 6/114
Maitland St |
(02) 6248 6255 | |
| Narrabundah | L'Arche Genesaret Inc Cottage 4 |
(02) 6295 2627 | Fax: (02) 6295-2627 Email: larche@austarmetro.com.au |
| Area/Location | Company Name |
Phone/
Mobile |
Facsimile
Internet Address |
| ACT Community Care aCe-Link |
(02) 6207 1121 | fax (02) 6205
1620 E-mail communitycare@act.gov.au |
|
| ACT Community Care aCe-Link |
(02) 6207 1360 | fax (02) 6205
1635 E-mail communitycare@act.gov.au |
|
| Fyshwick | Koomarri Community Access 88 Wollongong St |
(02) 6280 6143 | administration@koomarri.asn.au |
| Parkes | Koomarri Association A.C.T. Inc Kaye St |
administration@koomarri.asn.au | |
| Woden | Community Life
Skills Woden Community Service |
(02) 6282-2644 | Fax: (02) 6285-1322 Email: wcsadmin@wcs.org.au |
| Area/Location | Company Name | Phone/
Mobile |
Facsimile
Internet Address |
| All Seasons Garden Maintenance
|
(02) 6258 7850 | administration@koomarri.asn.au | |
| Pack n Post
|
(02) 6251 7455 | administration@koomarri.asn.au | |
| The Rag ACT | (02) 6280 4233 | administration@koomarri.asn.au | |
| Braddon | Ezi-Iron
|
(02) 6257 5758 | administration@koomarri.asn.au |
| Work-Ways 1st Fl |
(02) 6247 3611 | Fax: (02) 6247-3640 Email: admin@work-ways.com.au |
|
| Bruce | Unitronics Rm 5B |
(02) 6201-2903 | Fax: (02) 6201-5360 |
| Campbell | Open Employment
Program - Centacare Ainslie Village |
(02) 6257-5923 | Fax: (02) 6249-6886 Email: info@centacare-canberra.org |
| Canberra | Workplaces
Unit 7 |
(02) 6226 1699 | Fax: (02) 6257-7099 Email: wkplaces@goldweb.com.au |
| Fyshwick | Careers ACT 88
Wollongong St |
(02) 6280 6143 | Fax: (02) 6239 1603 |
| JobMatch ACT 88
Wollongong St |
(02) 6280 6143 | Fax: (02) 6239 1603 | |
| Jobsolve Unit 7 |
(02) 6280-6032 | Fax: (02) 6280-5929 Email: admin@jobsolve.org.au |
|
| Macquarie | Zenith
Employment & Training 5- 7 Lawry Pl |
(02) 6251 4591 | |
| Phillip | Advance Personnel (Canberra) Inc P.A. Chambers |
(02) 6285 2466 | Fax: (02)
6282 2320 Email: jobs@advance.org.au |
Area/Location |
Name |
Phone |
Facsimile
|
| Holder | Early
Intervention Service - Holder PS Weingarth St. |
(02) 6287 1394 | (02) 6287 0700 |
| Narrabundah | Narrabundah
Early Childhood Intervention Centre Nimbin St. |
(02) 6205 8059 | (02) 6205 8060 |
| Turner | Turner Early
Childhood Centre Condamine
St. |
(02) 6205 6622 | (02) 6205 6500 |
| Weston Creek | Early
Childhood Intervention ACT Inc PO Box 3839 |
(02) 6231
9299
|
E-mail: kpfamily@ozemail.com.au Fax: (02) 6259 2280 |
Area/Location |
Name |
Phone |
Facsimile
|
| ACT Community Care in-home support services, including home care, respite care, housekeeping and personal care services for the frail aged and people with disabilities; and in-home support services to households, in times of crisis, enabling them to be maintained as a unit. |
(02) 6205 2600 | E-mail communitycare@act.gov.au | |
| Dickson | Reachout Project Majura Community Centre |
(02) 6230-7958 | Fax: (02) 6257-5993 Email: helga.white@northside.asn.au |
| Kaleen | Canberra and
District Home Care 20 Bingham Cct |
(02) 6241-2032 | Fax: (02) 6241-2032 |
| Red Hill | Disabilities
Services - Centacare 57 Hicks St |
(02) 6239-4094 | Fax: (02) 6295-3600 Email: info@centacare-canberra.org |
| Reid | Community Options
Inc Jamieson House |
(02) 6230-1733 | Fax: (02) 6230-1805 Email: commopts@webone.com.au |
Area/Location |
Name |
Phone |
Facsimile
|
| Belconnen | Swanson Bilby Club Belconnen Health Centre Social group for young people with a mild intellectual disability. |
(02) 6205-1558 | Fax: (02) 6244-2355 |
| Canberra | The Mobilisers London Cct |
(02) 6249-8733 | Fax: (02) 6247-1258 |
| Recreational Activities for People with an
Intellectual Disability City YMCA |
(02) 6249-8733 | Fax: (02) 6247-1258 | |
| Hackett | ACT and Region
Disabled Sport and Recreation Association Room
11B |
(02) 6249-6965 | Fax: (02) 6257-3018 |
| Holt | Riding for the Disabled Assoc of ACT The Secretary |
(02) 6254 9190
|
Email: gemini4@bigpond.com.au |
| Lyneham | Creative Flow PO Box 159 |
0412-898-925 | Email: creativeflow@apex.net.au |
| Piallago | For You and Me Inc
(ACT & NSW) 2 Fairburn Ave |
(02) 6230-5125 | Fax: (02) 6230-5124 Email: fyminc@bigpond.com.au |
| Tharwa | Outward Bound Australia Naas Rd |
(02) 6237-5158 | Fax: (02) 6237-5224 Email: info@outwardbound.com.au |
Area/Location |
Name |
Phone |
Facsimile |
| Deakin | The
Woden School Denison St. |
(02) 6205 5966 | (02) 6205 5746 |
| Dickson | Dickson College Alternative Education Program Phillip
Ave. |
(02) 6205 6455 | (02) 6205 6462 |
| Fyshwick | Dairy
Flat Adolescent Program 2
Dairy Flat Rd. |
(02) 6205 7097 | (02) 6205 7139 |
| Dairy
Flat Education Centre 2 Dairy
Flat Rd. |
(02) 6205 7141 | (02) 6205 7090 | |
| Garran | Malkara
Special School Wisdom
Street |
(02) 6205 5911 | (02) 6205 5907 |
| Holt | Cranleigh School Starke St. |
(02) 6205 8000 | (02) 6205 7964 |
| Hughes | Hughes PS Autistic Children's Classes Kent
St. |
(02) 6205 5738 | (02) 6205 5653 |
| O'Connor | The
Cooperative School MacPherson St. |
(02) 6205 6340 | (02) 6205 7084 |
| Koomarri School
Dryandra St. |
(02) 6205 6377 | (02) 6205 6388 | |
| Tharwa | Birrigai Outdoor School RMB 142 |
(02) 6205 5135 | (02) 6205 5138 |
| Yarralumla | Yarralumla PS Behaviour Management Support Loftus
St. |
(02) 6205 5766 | (02) 6205 5754 |
Area/Location |
Position/Title |
Phone |
Facsimile
|
| Dickson | Special Care
Transport Majura Community Centre |
(0 |
