The sms information service for disabled people

We have designed a system to help anyone with a cell phone to find their nearest rehabilitation or other disability services.
Please send a short SMS to 072-172 2623 with your name, town, disability and the info you need.
We will then reply and tell you how to contact your nearest resource.
You can use your free SMS's but we are not a call centre so we do not reply to 'missed calls' or 'please call me'.
You can also send an email to the.sponge.project@gmail.com  or read more about us on http://thespongeproject.yolasite.com/

Introduction

• The.Sponge project is about advocating for better rehabilitation for disabled people. That includes awareness about rights, access to medical treatment and therapy, assistive devices, accessible buildings and transport, housing, education, skills development, employment and travel.
• Our prime mission is to make information about resources for all the above services available to any disabled person with access to a cell phone.
• We therefore offer an SMS Information Service (072-172 2623) to enable disabled people to locate their nearest rehabilitation resource.
• Our secondary mission is to try to sensitise people about disability issues and assist them to network with each other by subscribing to one or more of the Disability List Serves - see below.
• We send this newsletter to everyone on our database of resources (currently nearly 4000 contacts) to improve their awareness of disability issues and let them know how they can get more information.
• We think that ours is the only cross-disability newsletter addressing government departments or NGOs in this way in order to plug the gap on information on disability.
• Great news - The.Sponge has come out of the closet. We have posted our Excel database of resources onto our website. You are free to download it (about 2Mb), save it and manipulate it for your own non-commercial purposes. We will continue to update the database as we find new resources.
• Register with us - if you would like us to add a new resource or update your contact details, please complete and return the registration form that you can download from our website.
• We have reverted to a text-only format to be compatible with all discussion lists.
• If anyone has a problem to access this newsletter or the website with magnifier software or a screen reader, please let us know.


Promotion of the sms info service


• We are not receiving as many SMS enquiries as at the start of the project.
• Please make copies of the Community Notice at the top of this newsletter and display them in your offices and anywhere in the community where they may be seen by disabled people or their families. We would like to see the notices on the community notice boards in Shops and in Hospitals and Clinics, Welfare offices, SASSA pay points, Churches, Post Offices, Police Stations, Libraries, Schools, and Ward Councillor and other Municipal offices.
• You are welcome to add translations in local languages so that the service is accessible to as many disabled people as possible.
• It would also assist us if you would please include the notice in your newsletters or websites.

Angelman Syndrome

We are parents of a 5 year old girl who has Angelman Syndrome .  Currently in South Africa there is no network or foundation for parents or families living with an individual diagnosed with this Syndrome. Due to not enough awareness of this Syndrome alot op people living with this has not been diagnosed yet.  In countries such as America, New Zealand, Australia and Canada (to name just a few) they have huge  systems in place for the diagnosis of Angelman and support to those that have been diagnosed.

We need that network here as this Syndrome is very rare and dibilitating to families.  Our goal therefore is to try and locate all the individuals (called Angels) and their families living with Angelman in the whole of South Africa and to unite them.

If you have an Angel or know of one please contact us either on:

phiz@mweb.co.za or 039 7374613 or 0836350237

Regards,

Shawn and Alida Phizacklea

Speakeasy Stuttering Association of South Africa was established in 1992.

It's vision is to improve the lives of people of all ages who stutter and to liberate them from the fear of speaking so that they can communicate effectively in all situations.

It is a non-profit association with a membership of People Who Stutter, Speech Therapists and other interested persons from throughout South Africa and beyond. A Self Help Group For People Who Stutter is held on a Monday or Wednesday evenings on a month basis and is used as a forum to discuss issues around stuttering, share ideas and experiences, practice one's speech techniques and meet other people who stutter.

There is no fee involved and if one attends a meeting, there is no obligation to attend other meetings. Speakeasy is held in a friendly, warm and informal forum and everyone is welcome!

For further information, please contact Dina Lilian 082 820 6225.

Hi Hopes offers support, education and partnership to families with deaf or hard of hearing infants and toddlers.

Hi Hopes is an early intervention programme that empowers parents of deaf or hard of hearing children aged birth to three years. The programme is home based and free of charge, resulting in families being visited in their natural environment at a time that suits them.

Parent Advisors visit families weekly and partner with them as they begin their journey along the (often unknown) road of hearing loss, with their child. They offer support, information and education about any area of deafness that interests or puzzles the family. Parent Advisors administer quarterly assessments of language development. This language assessment scale is designed for children with a hearing loss and assesses the child’s progress in language development (both receptively and expressively), helping parents make decisions regarding language methodology, amplification and other related aspects influencing language development. Parent Advisors partner with other professionals in the child’s life to ensure that the best possible support team is provided for the family.

In addition to a Parent Advisor, Hi Hopes offers families the opportunity to be visited by a Deaf Mentor (oral or signing, depending on the communication choice of the family). Deaf Mentors are successful, Deaf members of society, trained to work with families and children with a hearing loss. The Deaf Mentor serves as a role model for the deaf child and family, a language educator and a means of accessing the Deaf Community. Having a Deaf Mentor allows parents to interact with successful Deaf adults and to build on their hope for their child’s future.

Hi Hopes is proud to have a qualified Psychometrist on staff who performs a full battery of developmental tests on all children in the programme biannually. The results of these tests provide insight into the overall development of the child and allow parents to understand areas in need of development, ensuring that the child develops to the best of his ability at all times.

If you, or anyone you know, has a child with a hearing loss, Hi Hopes is here to support you. Please contact our offices on 011 717 3750 or email us at HiHopes@wits.ac.za. We would love to hear from you and walk this journey with you.

Prader-Willi Syndrome

What is it?

Prader-Willi syndrome is a genetic disorder. Individuals suffering from the syndrome have specific characteristics such as hypotonia (low muscle tone), feeding difficulties and incomplete sexual development in the neonatal period, and obesity, short stature, mental impairment and behavioural problems later on. The condition was first described in the medical literature in 1956 by three doctors: A. Prader, H. Willi and A. Labhart, hence the name. The prevalence is between 1 in 10,000 and 1 in 15,000 live births. This syndrome occurs equally in males and females and is found in individuals of all races.