HI HOPES ANNUAL REPORT 2012
HI HOPES Annual Report 2012 1
HI HOPES ANNUAL REPORT 2012
This is the Erick family from Alexandra. Lindelwe was three years old (and ready to graduate out of the programme) at the time of this photo.
Shown above is baby Nomsidiso. She is the youngest 2012 HI HOPES referral in Kwa Zulu Natal at 6 weeks of age.
Dr Ali Bacher, former SA cricket administrator has this to say about his granddaughter: "Early detection, early intervention and wonderful support from HI HOPES and other professionals have made all the difference for Natasha".
This is Sumaya Pieterson, a good natured, happy little girl. HI HOPES has helped the family to explore all their communication options to enable her to reach her full potential.
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HI HOPES ANNUAL REPORT 2012 Contents 1.
Introduction .................................................................................................................................... 4
2.
Why Early Intervention? .................................................................................................................. 5
3.
HI HOPES Families and Infants Supported ........................................................................................ 6 3.1
4.
5.
6.
Referrals .............................................................................................................................. 6
3.1.1
Gender ............................................................................................................................. 7
3.1.2
Race ................................................................................................................................. 8
3.2
Age of referrals .................................................................................................................... 9
3.3
Total numbers of families supported .................................................................................... 9
3.4
Language Development........................................................................................................ 9
Home Interventionists ................................................................................................................... 10 4.1
Parent Advisors .................................................................................................................. 10
4.2
Deaf Mentors ..................................................................................................................... 10
Training ......................................................................................................................................... 11 5.1
Parent Advisors .................................................................................................................. 11
5.2
Deaf Mentors ..................................................................................................................... 11
5.3
Mentors ............................................................................................................................. 11
Workshops .................................................................................................................................... 11 6.1
Western Cape .................................................................................................................... 11
6.2
Gauteng ............................................................................................................................. 12
6.3
KwaZulu-Natal.................................................................................................................... 12
7.
Mentoring ..................................................................................................................................... 12
8.
National Meetings ......................................................................................................................... 12
9.
Conference Presentations and Publications ................................................................................... 13 9.1
Accredited publications ...................................................................................................... 13
9.2
Conference Presentations .................................................................................................. 13
10.
Achievements and Awards ......................................................................................................... 14
11.
Outreach ................................................................................................................................... 14 11.1
Gauteng ............................................................................................................................. 14
11.2
Western Cape .................................................................................................................... 14
11.3
Kwa Zulu-Natal .................................................................................................................. 15
12.
Marketing and Development ..................................................................................................... 15
13.
Conclusion ................................................................................................................................. 16
References ............................................................................................................................................ 17 Appendix A: Thank you .......................................................................................................................... 18 Appendix B: Some Family Stories ........................................................................................................... 19
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HI HOPES ANNUAL REPORT 2012 1. Introduction Every day in South Africa, it is estimated that 17 babies are born with some form of hearing loss 1, which will lead to irreversible delays if left unintervened2. In addition to the primary impact of the hearing loss on the infant, there is a significant impact on the family as a whole in terms of grieving for their deaf child and dealing with this disability and the life-long impact it can have on the family. Due to the severe neglect of this marginalised community, the Wits Centre for Deaf Studies launched the HI HOPES Early Intervention programme in September 2006. HI HOPES is the only home-based Early Intervention program in South Africa (and the rest of Africa) that offers specialised support for families of deaf and hard-of-hearing babies (from birth to three years of age1). Intervention is based on the unique hearing loss and challenges of each infant and family. The acronym HI HOPES stands for Home Intervention Hearing and Language Opportunities Parent Education Services. Intervention takes the form of fortnightly home visits (regardless of whether it is in a shack, a house, an orphanage or a flat) as research indicates that the natural environment is where both the family and child are most comfortable, do most of their interaction and are most open to learning. The specialised support is provided to families on a fortnightly basis and is offered without bias by specially trained home interventionists (called Parent Advisors). The aim is to meet the needs of each individual family, with home visits that occur in the home language of the family, if at all possible. Over the period of service to the family, this unique Early Intervention curriculum, developed specifically for the whole family, primarily offers 3 things: 1. It informs and educates the family about deafness and the choices they can make for their deaf infant; 2. It imparts skills to parents (giving them the opportunity to practically implement the information within the natural home environment); 3. Supports and encourages parents as they deal with and grow into this new role of raising an infant with a hearing loss. One of the central aspects of the HI HOPES programme is that it is unbiased and does not show preference for types of amplification, language or mode of communication. The aim of the programme is to empower parents to make fully informed choices for the unique needs of their child on all aspects of hearing loss, including amplification, communication and language development. Parent’s choices are supported by a coordinated team of well trained home interventionists. In addition to the Parent Advisor, HI HOPES also offers families access to the Deaf Mentor program. This program gives families the opportunity of meeting Deaf people who grew up experiencing deafness, allowing parents the opportunity to ask various questions on how hearing loss has impacted on their lives. Deaf Mentors are matched to families in terms of their mode of communication (some families choose to speak and some families choose to sign). The primary support Deaf Mentors offer is threefold: 1. Communicating directly with the infant with a hearing loss (both to teach him/her language and to model for the family how deaf people communicate) 2. As a language and cultural role model on Deaf identity and culture 3. Teaching the family how to communicate with their child in their chosen modality, Sign Language or spoken language
1
Although older children are not turned away, a shorter intervention program is followed. Referral into school and other support systems (such as a care dependency grant and accessing local community support services) is a top priority.
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HI HOPES ANNUAL REPORT 2012 2. Why Early Intervention? The first three years of a child’s life are crucial for language acquisition and future cognitive development. In terms of brain plasticity, the first three years are referred to as the ‘critical period’ for development, including physical, language and cognitive development as well as socio-emotional development. Research has shown that any form of barrier or disability that impedes access to typical stimulation, will in some way impede the infant’s ability to develop typically and achieve developmental milestones. In South Africa, equality for all people is entrenched in the South African Constitution’s Bill of Rights (Chapter 2: 9 p. 3). This chapter ensures that all children have a right to education and ensures that the rights of the child are protected. The Early Childhood Development (ECD) sector should therefore be equally represented in both policy planning and implementation to ensure that infants and young children are not discriminated against on the grounds of age, disability, language or birth 3. As outlined in our paper on ECD Policy in South Africa4, the HI HOPES early intervention programme aims to achieve the four goals as set out by the National Integrated Plan for Early Childhood Development in South Africa 2005-20105: 1. 2. 3. 4.
Create environments in which children, particularly vulnerable children, can learn, grow and thrive socially, emotionally, physically and cognitively. Increase opportunities for young children to enter formal schooling in a state of better preparedness. Provide support to adults who care for young children and the communities in which they live in order to enhance their abilities to care for and educate these children. Reduce the adverse developmental effects of poverty and other forms of deprivation to children from birth to three.
International research has found that if a hearing loss is identified and holistic early intervention services instituted before the age of six months, children with hearing loss will typically develop on par with hearing children6. Due to this evident benefit of intervention at the earliest possible opportunity the Early Hearing Detection and Intervention (EDHI) movement was launched internationally. The primary drive is to have: all babies’ hearing screened at birth; hearing loss identified by 1 month of age; a diagnosis confirmed by 3 months and intervention in place by 6 months of age. South Africa has begun to recognize the value of the EHDI process and has developed similar guidelines for screening and early intervention in a document endorsed by the Health Professionals Council of South Africa ⁷; however, screening and early intervention services are not legislated and occur on a random basis. We do not believe it is ethical to wait for this process and protocols to be legislated to ensure access to early intervention services. To this end, HI HOPES has taken the lead by advocating for the early identification and intervention of infants with any form of hearing loss. In addition to the clear impact of the hearing loss (be it mild or profound) on the infant, the family can be irreparably affected by the birth of a deaf or hard of hearing child. For this reason, the family-centred focus of HI HOPES, working with families in a partnership model, is a significant strength of the intervention offered. Supporting families as early as possible is the key into the process toward holistic ‘normalisation’ of the family dynamic, and is the foundation for all development and growth of the child. One of the outcomes of early intervention is that deaf and hard of hearing infants are provided with the opportunity to become school-ready. Prior to the institution of HI HOPES services, this was not happening in South Africa. Infants registered in the HI HOPES programme are transitioned out at three years of age and parents are supported in choosing the appropriate school for their child.
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HI HOPES ANNUAL REPORT 2012 3. HI HOPES Families and Infants Supported During 2012 the HI HOPES team focused energy and time on evaluating the program and wrestling with how to increase both the sustainability and reach of the important services provided to Deaf babies and their families. To this end important decisions were made in the latter part of the year that will begin to facilitate our goals of sustainability and improved access to services by families of deaf babies. The schedule of visiting was changed from weekly to fortnightly visits. It was anticipated that with some training and planning the Parent Advisors would be able to ensure even more content rich home visits and allow a greater time for practicing skills between visits. This change would also allow for a greater number of children and families to be supported while decreasing costs substantially. This change was implemented from October 2012 and thus far has proved to be successful. The Parent Advisors and Deaf Mentors have adapted to the new schedule and are finding innovative ways to leave their families with skills to practice for the two weeks between visits. Further analysis will be done on the impact of this change in the New Year. During November of 2012 HI HOPES was placed second in the Early Childhood Development awards. It is a great honour to be acknowledged as an innovative leader in the field of early childhood intervention in South Africa and the prize money of R10 000 was used to buy much needed equipment for the three provinces. The following section presents an overview of the data for HI HOPES’ 6th year of running (2012).
3.1 Referrals In 2012, the number of referrals was 305, of which 96 did not receive services as they were either referred out to more appropriate services or were placed in school due to their age. Some of the families could not be contacted as they had either moved or cell phone numbers had changed. The statistics that follow refer to the 215 infants and families we provided support to during the year. Figure 1: Annual growth rate of HI HOPES 2007 – 2012: Children who were referred and received services
Programme Growth 250 199
200
211
215
2011
2012
134
150 100 50
32
48
0 2007
2008
2009
2010
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HI HOPES ANNUAL REPORT 2012
Figure 2: Total numbers of families receiving services in each province
Provincial Distribution new referrals serviced in 2012 48 99
GT KZN
68
WC
We take pride in the fact that HI HOPES services are non-discriminatory and are offered to families within both the public and private health care sectors. The following section looks at the breakdown of referrals in 2012. 3.1.1 Gender Nationally in 2012 there were a higher percentage of males (52%), compared to females (48%) receiving services from HI HOPES. The Western Cape was the only province that had more females (52%) than males (48%). Figure 3: Distribution of families receiving services by gender across the three provinces
GENDER 60% 50%
40% GT
30%
KZN
20%
WC
10% 0%
National
GT
Female 45%
Male 55%
KZN
47%
53%
WC
52%
48%
National
48%
52%
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HI HOPES ANNUAL REPORT 2012 3.1.2 Race The following figures show the breakdown of families serviced by HI HOPES by race in each province. Figure 4: Percentage of families receiving services by race in each province
RACE 100%
GT KZN WC National
80% 60% 40% 20% 0% GT
Black 76%
Coloured 4%
Indian 7%
White 13%
KZN
86%
2%
6%
6%
WC
54%
38%
0%
8%
National
74%
11%
5%
10%
The majority of families receiving services in all of the provinces in 2012 were black, 74% nationally. The Western Cape offered services to a significant proportion of coloured families (38%). The split between the race groups in all provinces is largely reflective of population demographics for each region. 3.1.3 Referral sources Babies that are referred to HI HOPES come from a wide range of sources: audiologists, speech therapists, hospitals/clinics, schools, assessment centres and DeafSA. Additionally families self referred to HI HOPES through information that they gained through word of mouth and the media. Figure 5: Referral Sources
Referral source 100% 80% 60% 40% 20% 0%
GT KZN WC National
In all provinces in 2012, the vast majority of referrals came from government hospitals, at a national average of 79%. 8
HI HOPES ANNUAL REPORT 2012 3.2 Age of referrals Despite the very clear evidence for the importance of early intervention beginning as close to birth as possible, HI HOPES is still receiving referrals of deaf children far too late. Young/infant referrals should be the norm, but sadly is not always the case. Although our youngest referral for 2012 was 3 weeks old, late referrals continue to make up a large percentage of statistics. The oldest referral in 2012 was an 11 year old. The average age, nationally, for when babies started receiving intervention was 41 months (3 years 5 months). This is an area of great concern for us and we have embarked on a poster and DVD awareness campaign to continue working towards one of the central goals of HI HOPES, to lower the age of identification and referral for early intervention. 3.3 Total numbers of families supported As the younger babies who come into the HI HOPES programme remain with the programme until they are three years old, each province starts the year with some children who were previously registered. These figures are added to the figures of new referrals in 2012 to provide the total number of children actively supported by HI HOPES in 2012. The following chart shows the total number of families supported by HI HOPES in each province in 2012. Figure 6: Total number of families supported per province
Provincial Distribution Families visited 48 97
131
GT KZN WC TOTAL:
131 97 48 276
GT KZN WC
3.4 Language Development At the initial Language Development Scale (LDS) assessment, the children assessed were an average age of 22 months old (the youngest was 1 month and the oldest was 39 months). They had an average language delay of 13 months. This indicates that they were a full year behind their typical hearing peers in language development when they started with the HI HOPES program. Language Development Scale (LDS) analysis for the children who had more than one language assessment completed show an average of one month improvement in language for every month of time that passed. This is consistent with the aim of HI HOPES intervention of one month of language development for every month of intervention.
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HI HOPES ANNUAL REPORT 2012 4. Home Interventionists As stated previously, HI HOPES has two teams of trained interventionists, the Parent Advisor (PA) and the Deaf Mentor (DM). 4.1 Parent Advisors There are 123 Parent Advisors nationally. The breakdown in each province by race and gender follows. Table 1: Provincial distribution of Parent Advisors by gender and race
Gauteng Kwa Zulu Natal Western Cape Eastern Cape (pilot program) Total
Male Female Male Female Male Female Male Female
Black 6 29 0 14 1 12 0 6 68
Coloured 0 1 0 0 0 15 0 0 16
Indian 0 5 0 7 0 0 0 0 12
White 0 16 1 7 1 8 0 1 34
Total 6 51 1 28 2 35 0 7 130
4.2 Deaf Mentors We have trained Deaf Mentors in all three provinces and the work of Deaf Mentors is expanding. There are a total of 47 trained and active DMs who are fairly evenly distributed over the provinces as seen in the table that follows: Table 2: Provincial distribution of Deaf Mentors by gender and race
Gauteng Kwa Zulu Natal Western Cape Total
Male Female Male Female Male Female
Black 2 8 4 7 3 3 27
Coloured 0 0 0 0 1 1 2
Indian 0 3 0 2 0 0 5
White 1 4 0 1 2 5 13
Total 3 15 4 10 6 9 47
One of the strengths of the HI HOPES programme is that the Deaf Mentoring team consists of members who either sign, speak or use total communication, as well as and having hearing aids, cochlear implants or choosing to use no amplification. All Deaf Mentors are trained in how to share their experiences without imposing bias and personal opinions on the family or deaf child. Research has shown that meeting a Deaf adult is one of the key indicators of success in dealing with the grief of having a deaf baby. There are various challenges in the area of Deaf Mentoring, the foremost of which is not having a provincial coordinator. Each province has unique and creative ways of addressing these challenges.
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HI HOPES ANNUAL REPORT 2012 5. Training Two training courses for new Parent Advisors and one training course for Deaf Mentors took place in 2012. Mentor training was also held. 5.1 Parent Advisors Currently HI HOPES has a team of 123 active Parent Advisors nationally. In April 2012 in the Western Cape 15 new Parent Advisors successfully completed the training and in Gauteng, 19 new Parent Advisors successfully completed the June 2012 training. This was provided by the international trainer for SKI-HI (the American equivalent of HI HOPES), Dr Paula Pittman and Professor Claudine StÜrbeck. Training took place over six consecutive days, with a follow up day for training on the Language Development Scale (LDS) the specialised tool used to assess children’s progress in language development. The PAs were selected from areas where interventionists were needed to service families of deaf babies living in those areas. One parent advisor for the Western Cape attended the Gauteng training course. 5.2 Deaf Mentors The Deaf Mentor training is run by our Deaf trainer who is also the coordinator of the Deaf mentor team. Training was held in February 2012, and 4 new Deaf Mentors were added to the Gauteng Team and one was added to the Kwa Zulu Natal team by attending this training in Gauteng. Planning was done for DM training in the Western Cape to be held early in 2013. 5.3 Mentors Mentoring is seen as one of the key components of our training program and quality assurance process and HI HOPES has a mentoring programme in each province. Each Parent Advisor is allocated to a mentor with whom they develop a personal mentoring plan. An expert mentor, with years of experience, from the USA SKI HI Program came to South Africa in June 2012 and spent several weeks with the mentoring teams in Gauteng and Kwa Zulu Natal. She accompanied mentors and PAs on mentoring home visits and offered them practical onsite training and support.
6. Workshops Workshops form an integral part of the HI HOPES continuing education programme (CEP) and enables the teams in each province to keep learning and stay connected. Each year 3-4 provincial workshops are held, as well as additional specialist workshops whenever questions or specific needs arise.
6.1 Western Cape In the Western Cape four meetings were held for the parent advisors during 2012. Themes and topics covered included: South African Sign Language (SASL) training, Language Development Scale (LDS) training, training on Auditory Neuropathy Spectrum disorder and reflection on an early intervention program in the province that focuses on Auditory Verbal Therapy.
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HI HOPES ANNUAL REPORT 2012 6.2 Gauteng Four workshops were held in 2012 to further equip the Parent Advisors. Themes and topics covered included: Working with children who are Deaf-Blind, bone anchored hearing aids (BAHA), Language Development Scale training and ear care products. 6.3 Kwa Zulu-Natal Three PA workshops were held in Kwa Zulu Natal in 2012 and included intensive South African Sign Language (SASL) training, an interview with a parent of a child about to have Cochlear Implant surgery, input on play therapy and memory boxes, input on Augmentative and Alternative Communication and a practical workshop on fitting hearing aids.
7.
Mentoring
The mentoring team provide individualised support to the parent advisors and parents. Home visits were done with the PAs and numerous mentoring sessions were done over the phone or via email. Mentoring was provided when parent advisors needed more information and questions arose on options for school placement and discussing suitable topics for Home Visits. One-on-one mentoring visits occurred where mentors met with the individual PAs or DMs to assist with queries and give guidance. As mentioned above, as part of our quality assurance and equipping programme, a highly skilled and experienced SKI-HI mentor from the USA visited the Western Cape and Gauteng to go on home visits with local Parent Advisors and their Mentors during June 2012.
8.
National Meetings
One national team meeting was held at the National Office in Johannesburg. Provincial Coordinators from the Western Cape, Gauteng and Kwa Zulu Natal attended, along with the other members of the National Team. These national meetings are crucial as a geographically spread out team is in need of face-to-face time during which challenges and questions are addressed with fellow Provincial Coordinators. In addition to provincial operations, issues regarding national strategy were also addressed with the aim of working toward formalising protocols and processes and thus solidifying the overall HI HOPES systems (which have been piloted and grown and matured over the past 6 years).
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HI HOPES ANNUAL REPORT 2012 9. Conference Presentations and Publications 9.1
Accredited publications Moodley, S. & Störbeck, C. (2012) The Role of the Neonatal Nurse in Early Hearing Detection and Intervention in South Africa Professional Nursing Today 16(4), 28-31 Störbeck, C. (2012) Childhood Hearing Loss in the developing World International journal of Child Health and Nutrition, 1 (59-65)
9.2
Conference Presentations Störbeck, C. (2012) Early Intervention for paediatric Hearing Loss in South Africa – Social and Financial Implications. Department of Social Development Conference on Early Childhood Development, 28th- 30th March 2012 East London, Eastern Cape Moodley, S. & Zille, C. (2012) Early Intervention for Children With Hearing Loss: It Begins at Birth Presentation at Coalition for Global Hearing Health Conference 30th May-1st June 2012, Pretoria South Africa Moodley, S. & Störbeck, C. (2012) Early Hearing Intervention in South Africa: Longitudinal tracking of HI HOPES intervention data and outcomes Presentation at Coalition for Global Hearing Health Conference 30th May-1st June 2012, Pretoria South Africa Störbeck, C. (2012) Setting up a High Quality Early Intervention Program: A Developing World Perspective Family Centred Early Intervention Conference for Children who are Deaf or Hard of Hearing 30th May-1st June 2012, Bad Ischl, Austria De Villiers, R., Moodley, S. & Störbeck, C. (2012) HI HOPES: Applicability to Developing countries Presentation at Public Health Planning Hearing Impairment Short Course 29th November 2012 Störbeck, C. (2012) What about infants with special needs and disabilities: Addressing the silence. Transdisciplinary Conference on Early Childhood development17th-18th July 2012, Sports Science Institute, Cape Town South Africa Storbeck, C. (2012) EHDI in the Community: Addressing the Needs of Families and deaf infants Department of Health Seminar, 19th August 2012, Pretoria Störbeck, C. (2012) Letter to the Star Response to “Medical Aid’s changes spark online petition, February 2012 Magongwa L (2012) Growing up Deaf. Dominican School for the Deaf, Hammanskraal. 50th anniversary. 16 June 2012 Magongwa L (2012) The Current Status of SASL. University of Pretoria Faculty Seminar. 6 July 2012. Magongwa l (2012) Living and learning as a deaf person: Challenges on the road to success. The merSETA – 2nd People with Disabilities Forum. Sunnyside Park Hotel
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HI HOPES ANNUAL REPORT 2012 10.
Achievements and Awards
During November of 2012 HI HOPES was placed second in the Early Childhood Development awards. It is a great honour to be acknowledged as an innovative leader in the field of early childhood intervention in South Africa. Prof Claudine StĂśrbeck (the director of HI HOPES): Was awarded Associate Professor Status in 2012. Was awarded a visiting Professorship at the University of Manchester in the UK, 2012 - 2013 Chaired a session at the 1st Family Centred Early Intervention for Children who are Deaf or Hard of Hearing Conference in Austria. Was also a key part of the working group looking at intervention for children with hearing loss
11.
Outreach
Due to the fact that HI HOPES is a wholly community-based project, with our early interventionists supporting families in their local communities, it is a top priority for us to reach out in the local communities. This outreach occurs both as part of our strategic plan to build networks with key stakeholders (such as local clinics, hospitals and NGOs working within the ECD sector) as well as on an ad hoc basis whenever we are invited to meet a specific need. 11.1 Gauteng Presentations: A presentation on HI HOPES and deafness was given in March 2012 during the caregiver training held at Forest Town School. School visits: The Provincial Coordinator visited MC Kharbai School for the Deaf to consolidate the positive relationship between school and HI HOPES. A team also visited the American school in Pretoria to raise awareness of the needs of Deaf babies. Marketing and Development: Pamphlets, posters, DVDs and magnetic car-boards have been created and used to build awareness of HI HOPES in the province, especially with audiologists and related disciplines. The Myschool campaign was promoted vigorously and a significant number of people signed up meaning that HI HOPES has started receiving some regular monthly funding from the campaign. 11.2
Western Cape Presentations: A power point presentation was given at the DEAFSA ECD conference in collaboration with the Department of Social Development. A presentation was also done at the George and Annie Stark Home’s knit club after they donated 50 hand knitted jerseys for the babies and children in the programme. Another power point presentation was done at the Hearing and Health Course which was hosted by the University of Cape Town. HI HOPES provided insight into how intervention can be provided to families of children in developing countries where there are minimal resources. Professional visits: Various visits to professionals were made to raise awareness of HI HOPES and to discuss referred infants. These included visits to the audiologists of Tygerberg hospital, Worcester hospital, Red Cross Hospital, the Ear Institute, and numerous visits to private audiologists. The project manager of the role out of the Early Newborn screening program in the Cape Metropole was also visited with regard to referring to HI HOPES. 14
HI HOPES ANNUAL REPORT 2012
School visits: Three schools for Deaf learners were visited: Grimley School for the deaf in Hout Bay, the Carel du Toit Centre (Tygerberg) and the Nuwe Hoop Centre for Deaf learners in Worcester. A visit to Sandra Maritz of the National Institute for the Deaf in Worcester was fruitful. She and her team of technical staff offered to record video material to put onto DVDs for parents to watch at home. Outreach: The community newspapers made a special effort to advertise the HI HOPES training in April. The provincial coordinator was invited to discuss HI HOPES on one of the local radio stations. The Sinethemba School for children with multi disabilities in Cross Roads was visited to get information on the criteria for acceptance into the school as well as to thank them for acceptance of the children from HI HOPES we had already referred. The Sobambisana Project in Cross Roads is a community project that runs crèche facilities for mainstream and children with disabilities. They were also visited to thank them for their support in accepting HI HOPES children in their programme. 11.3
Kwa Zulu Natal Professional visits: Visits and presentations were made to audiologists at Nkosi Albert Luthuli Central Hospital, Murchison Hospital, King Edward VIII hospital and Phoenix Assessment and Therapy Centre to raise awareness about HI HOPES. A visit was made to Greys Hospital Audiology Department (who now refer all their paediatric cases to HI HOPES) and contact was also made with various private audiologists in KZN during which posters and DVDs were distributed. In addition to visits done by the Provincial Coordinator, all PAs have been encouraged to visit their local audiologists, both in the public and private sectors. This has led to increased referrals from many areas. Presentations: Two information sessions were held at KZN Blind and Deaf Society offices, one for social workers and audiologists and the other for parents. An information morning was held for audiologists and parents of children with hearing loss at the Phoenix Assessment and Therapy Centre and a presentation was done at a workshop run by Sinomlando, an NGO in Pietermaritzburg. School visits: In February 2012, 67 hearing aids were presented to St Martin de Porres Comprehensive School in Port Shepstone. The hearing aids were part of a number kindly donated to HI HOPES by the ‘Help the Little Ears’ project of the German Lions foundation and the Lion’s Clubs of Kelkheim, Table View and Frankenthal. The school caters for Deaf, physically and mentally challenged children from pre-school to matric. They plan to use the hearing aids with their FM systems. Fulton School for the Deaf invited HI HOPES as VIP guests to their annual
concert in November and two other schools were visited with regard to placement of HI HOPES children.
12.
Marketing and Development
As a community-based project, HI HOPES relies solely on donations and grants, and to this end we have worked hard on compiling a holistic development campaign which included: The HI HOPES website which informs the public about HI HOPES. Activities are updated regularly and the website includes a donation site for any visitor who would like to support HI HOPES www.hihopes.co.za.
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HI HOPES ANNUAL REPORT 2012 Electronic media including a Face Book page and a Twitter account. Our “supporters” and “followers” have been increasing monthly. A regular e-newsletter is being sent out to HI HOPES supporters. Three different Z-fold Brochures specifically targeting Parents, Professionals and Donors have been regularly distributed to hospitals, both public and private, professionals in Paediatric Units and Audiology Departments. There has been a very positive response to these Z-folds. Awareness of infant hearing loss posters – Development of these posters was funded by the Department of Social Development – WC. They have been distributed within the public health sector (hospitals and clinics).. An early hearing screening DVD – was created using one of our own HI HOPES families and was distributed within the public health sector. The aim is to raise awareness about paediatric hearing loss and the importance of early intervention within the local community (This project was funded by the Department of Social Development – WC). We are extremely grateful to our donors (individuals, trusts, corporates and government departments) without whom we would not be able to give HOPE to deaf infants and their families. We have listed our donors on our website and ensure that in addition to annual reports, donors feel welcome to visit us to see the work we are doing at any time. A list of all 2012 donors appears in Appendix A.
13.
Conclusion
HI HOPES has grown a significant 572% over the past 6 years, supporting over 800 deaf babies and their families. 2012 saw a necessary growth and strengthening of our programme in all 3 provinces with an increase in our number of Parent Advisors and Deaf Mentors. Our outreach into the community has been extensive, and more awareness has been raised through both community level and through workshops and presentations at academic conferences. We continue to develop a strong quality assurance mechanism in order to ensure that our services are of the highest quality. Along with this growth comes a growth in responsibility, accountability and transparency. Our aim is to rise to this challenge and to ensure that our services continue to improve in quality both in terms of service provision and child and family outcomes. We continue to collect data as part of the HI HOPES longitudinal research project to both share our findings and learning from them, in order to keep growing and improving the programme. This growth has also led to an increased need for donor support and investors, from both organisations and individuals, to ensure the sustainability of the program. Our biggest asset is our staff (including National and Provincial office staff and all the Parent Advisors and Deaf Mentors). Their dedication, compassion, enthusiasm and willingness to go the extra mile by travelling to remote areas, working over weekends and giving so much of themselves have contributed to building the enviable ethical and professional reputation of HI HOPES, as the only home-based Early Intervention programme in South Africa.
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HI HOPES ANNUAL REPORT 2012 References 1. Swanepoel, D. (2008). Early Intervention for Hearing Loss in SA: Cost Benefits and Current Status Ndiyeva Audiology Conference. Carel du Toit Centre. 2. Yoshinaga-Itano, C., & Apuzzo, M. L. (1998). The development of deaf and hard of hearing Children identified early through the high-risk registry. American Annals of the Deaf, 143(5), 416-424. 3. The South African Government (1996). The Constitution of the Republic of South Africa. South Africa. 4. Stรถrbeck, C. & Moodley, S. (2011). ECD Policy in South Africa: What about children without disabilities? Journal of African Studies and Development, 3 (1), 1-8. 5. UNICEF (2005). National Integrated Plan for ECD in South Africa, Pretoria, South Africa. 6. Yoshinaga-Itano, C. (2004). Levels of evidence: universal newborn hearing screening UNHS and early hearing detection and intervention systems (EHDI). Journal of Communication Disorders, 37, 451-456. 7. Health Professional Council of South Africa. (2007). Early hearing detection and intervention programmes in South Africa position statement. Pretoria, South Africa: Health Professions Council of South Africa.
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HI HOPES ANNUAL REPORT 2012 Appendix A: Thank you HI HOPES thanks SKI-HI (and in particular it’s Director Sue Watkins) for the right to use their programme and their training materials. We also extend a special thank you to Dr Paula Pittman and Mrs Mary Woolley who donate their time and skills to HI HOPES. We have been working together since HI HOPES’ inception and their input in the training and mentoring has been greatly appreciated. We are extremely grateful to the following donors who donated to HI HOPES in 2012: ORGANISATIONS Amashova Cyclists and Helen Zille Anglo American Attorneys Marto Laffitte Bation Graphics CAPCO Carl and Emily Fuchs Foundation City of Cape Town Department of Social Development Gauteng Department of Social Development WC DG Murray Trust First Rand/Momentum Illembe Technologies Investec bank Ltd Mary Slack Foundation My School Woolworths Project Nandos Lambton Outlook Appointments PIC Solutions Stella and Paul Lowenstein Trust Sasfin Bank The Childwick Trust/Jim Joel Foundation Ultra Liquors Wartenweiler Trust INDIVIDUALS Arteiro, Kerryn Nicole (Ms) Bauskin, Barbara (Mrs) Bond, Leander (Mrs) Carr, Gwen (Ms) Clowes, Richard (Mr & Mrs) da Silva, Lisa (Ms) Daly, Bernard (Mr)
INDIVIDUALS- Continued De Sousa, Angie (Ms) De Sousa, Monica (Ms) Dioguardi, Heather (Ms) Duarte, F (Ms) Edley, Lynette (Ms) Eliasov, Ariel Simon (Mr) Fisher, Catherine (Ms) Fisher, Jeffrey Barry (Mr) Florence, Barbara Helen (Ms) Goring, Dianne (Ms) Kentridge, Sydney Woolf (Sir) Klennert, Marion (Ms) Kotze, Michal (Mr) Kruger, T (M) Lohrentz, Linda (Ms) Manack-Sindhi, Anisa (Ms) Martin, David (Mr) Marto, Carla (Ms) Mccallum, Sheila (Ms) Mitchell, Corrie (Ms) Mojela, Josephine Kgao (Ms) Moodley, Selvarani (Ms) Reenpan, Joggie and Gerda Sass-Lehrer, Marilyn (Ms) Seabrooke, H H (Mr) Störbeck, Claudine (Prof) Theunissen, Shaun (Mr) van Heerden, Glenn (Mr) Wagenaar, Linda (Ms) Weisz, Lynn (Ms) Young, Alys (Professor) Zille, Carla Henrietta (Ms) Zille, Helen Otta (Ms) The Amashova and Argus cycling teams A special thank you to Dean Macpherson and Mandy Hughes who helped to arrange the HI HOPES cycle teams. They are seen here with Darren Maul and Helen Zille who cycled the Amashova race for HI HOPES too.
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HI HOPES ANNUAL REPORT 2012 Appendix B: Some Family Stories Monica’s journey
Monica went to have her hearing tested when her crèche expressed concerns at two years of age. She was diagnosed with a profound bilateral hearing loss at the Milpark hospital. Monica’s mom, Ria, began exploring all the options available to them and they were referred to the Chris Hani Baragwanath hospital to find out if Monica would be a good candidate for a cochlear implant. The audiologist there referred Monica and her family to HI HOPES so that they could have all the information and understand all the amplification and communication choices available to them. While the family was exploring the options they decided to use total communication with Monica. They continued speaking with her, but added visual communication too. Monica wore her hearing aids consistently. The audiologists running the program decided that she was a good candidate for a cochlear implant. The family were fortunate to be selected as the beneficiaries of the 94.7 Bidvest ‘Hear for Life’ Trust and they chose to go ahead with the cochlear implant surgery for Monica. Monica was the 50th recipient of a cochlear implant from the fund. After the surgery Monica’s family continued meeting with their HI HOPES parent advisor every second week and she assisted them with developing her oral language. Monica began learning to listen and use her voice to communicate. The family is very grateful to HI HOPES for all their support, and all the information and encouragement they have received throughout this journey with their special child.
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HI HOPES ANNUAL REPORT 2012 The Nkabinde Family
Yolande Nkabinde was referred to HI HOPES by Grey's Audiology. She lives with her mom and 2 older siblings in an informal settlement outside Pietermaritzburg, on the way to Ixopo. Yolande’s mom, Mandisa, is learning South African Sign Language and is very appreciative of the HI HOPES visits. Yolande is at a mainstream crèche, which Doreen (her Parent Advisor) visited to explain to the teachers the importance of wearing hearing aids, and how to maximize the learning environment for her. The family is considering a move to Durban in the New Year so Yolande can attend Fulton School for the Deaf.
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