Hi hopes annual report for 2014 by Sheila McCallum

WITS HI HOPES Early Intervention Programme for Children with Hearing Loss

2014 Annual Report Every day in South Africa, it is estimated that 17 babies are born with some degree of hearing loss. Without intervention this will lead to irreversible developmental delays. In addition to the primary impact of this hearing loss on the infant, there is a significant impact on the family as a whole in terms of dealing with the disability and its life-long implications. The Wits Centre for Deaf Studies launched the HI HOPES Early Intervention programme in September 2006 to begin to meet the needs of this marginalised community of deaf children and their families. HI HOPES is the only home-based Early Intervention programme in Africa that offers specialised support for the families of deaf and hard-of-hearing infants from birth to three years of age. Intervention is based on the individual hearing loss and unique challenges of each infant and family. The family has the most significant impact on the development of any child so intervention is family focussed and takes the form of fortnightly home visits, regardless of whether it is in a shack, a house, an orphanage or a flat. Research indicates that this natural environment is where the family is most comfortable, do most of their interaction and the child is most open to learning. This support is offered in the home language of the family wherever possible.

Mwandle Mseleku at her graduation from HI HOPES.

Blake Solomon (on the left) and his older brother.

Home Intervention Hearing and Language Opportunities Parent Education Services

WITS HI HOPES ANNUAL REPORT 2014 Contents 1. Introduction ................................................................................................ 3 2.

Why Early Intervention? ............................................................................. 3

HI HOPES Families and Infants Supported during 2014.............................. 4 3.1

Referrals .............................................................................................. 4

3.1.1

Gender ........................................................................................ 5

3.1.2

Race ....................................................................................................................................... 5

3.1.3

Dwellings and Home Language ............................................................................................. 6

3.1.4

Referral sources .................................................................................................................... 7

3.1.5

Age of referrals ..................................................................................................................... 7

3.1.6

Cause of hearing loss ............................................................................................................ 8

3.2

Total numbers of families supported............................................................................................ 8

3.3

Language Development ................................................................................................................ 9

Home Interventionists ........................................................................................................................ 10 4.1

Parent Advisors ........................................................................................................................... 10

4.2

Deaf Mentors .............................................................................................................................. 10

Training and workshops ...................................................................................................................... 11 5.1

Training Trainers ......................................................................................................................... 11

5.2

Parent Advisors and Deaf Mentors ............................................................................................. 11

5.3

Workshops .................................................................................................................................. 12

Mentoring ........................................................................................................................................... 12

The National Team .............................................................................................................................. 13

Outreach, Marketing and Development ............................................................................................. 14

Conclusion ........................................................................................................................................... 15

Appendix A: Audit report ............................................................................................................................ 16 Appendix B: Family Stories ......................................................................................................................... 19 Appendix C: Thank you ............................................................................................................................... 21 References .................................................................................................................................................. 22

WITS HI HOPES ANNUAL REPORT 2014 1. Introduction HI HOPES early intervention services are provided to families by trained interventionists who are community based, called Parent Advisors. Over the period of service to the family, the 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 language and child development skills to parents (giving them the opportunity to practically implement the information within the natural home environment); 3. It supports and encourages parents as they deal with and grow into the new role of raising a child 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 to address the unique needs of their child on all aspects of hearing loss, including amplification, communication and language development choices. These are then supported by the coordinated team of trained interventionists. In addition to the Parent Advisor, HI HOPES also offers families access to the Deaf Mentor programme. This programme gives families the opportunity to meet people who grew up experiencing deafness, and allows parents the opportunity to ask questions on how hearing loss has impacted the Deaf Mentor’s life. Deaf Mentors are matched to families in terms of their mode of communication (some families choose to speak and others choose to sign). The primary support Deaf Mentors offer is three-fold: 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. Serving 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: Spoken language or Sign language

Mbongeni and his Parent Advisor, Nonhlanhla

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 often referred to as the ‘critical period’ for development. This includes physical, language, cognitive and socio-emotional development. Research has shown that any form of barrier or disability that impedes access to typical stimulation, will impede the infant’s ability to achieve the developmental milestones. However, if a hearing loss is identified and holistic early intervention services instituted before the age of six months, children with hearing loss will develop typically and on par with hearing children.

WITS HI HOPES ANNUAL REPORT 2014 Internationally, the primary drive is to have all babiesâ&#x20AC;&#x2122; 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 this process and has developed similar guidelines for screening and early intervention as endorsed by the Health Professionals Council of South Africa. However, screening and early intervention services are not legislated and occur on a random basis. To improve outcomes in this area HI HOPES has taken the lead by advocating for the early identification of, and intervention for, 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, there is a significant impact on the family too. The family has the most significant influence on the developmental outcomes of any child, and so 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 key in ensuring the most favourable outcomes for any child with hearing loss. Infants registered in the HI HOPES programme are transitioned out at three years of age and parents are supported in choosing appropriate schooling for their child. Older children referred to HI HOPES receive short term intervention to assist with schooling choices, amplification and accessing the care dependency grant where appropriate.

3. HI HOPES Families and Infants Supported during 2014 The following section presents an overview of the work of HI HOPES in its 8th year of running (2014).

3.1

Referrals

Since inception in 2006, HI HOPES has offered early intervention services to over 1000 families who have a child with a hearing loss. In 2014, the number of referrals was 196, of which 41 did not receive services as they were either referred out to more appropriate services, the family relocated or the child was placed in school due to their age. 10 families referred to HI HOPES did not receive services because they were in areas where we currently do not have trained interventionists. This highlights the pressing need to train interventionists for these gap areas. Some of the families referred to HI HOPES could not be contacted as they had either moved or cell phone numbers had changed. Figure 1: Referrals to HI HOPES since inception by province

WITS HI HOPES ANNUAL REPORT 2014 HI HOPES services are offered to all families free of charge. The statistics that follow refer to 160 infants and families, 145 of whom registered with HI HOPES during the 2014 year and 15 who registered at the end of 2013, but only started receiving services in 2014. 3.1.1 Gender Nationally in 2014 there was a higher percentage of males (54%), compared to females (46%) receiving services from HI HOPES. In all provinces more males than females were referred. Figure 2: Distribution of families receiving services by gender across the three provinces

3.1.2 Race The following figures show the racial breakdown of families receiving HI HOPES services in each province. Figure 3: Percentage of families receiving services by race in each province

The majority of families receiving services in all of the provinces in 2014 were Black, 78.5% nationally. The Western Cape offered services to a significant proportion of Coloured families (31%). The split between the race groups in all provinces is largely reflective of the population demographics for each region. 5

WITS HI HOPES ANNUAL REPORT 2014 3.1.3 Dwellings and Home Language HI HOPES is a community based, family-centred intervention programme with interventionists from the local community visiting families in their homes, and offering services in the home language of the family wherever possible. The following figure shows some of the different types of homes that our interventionists have visited to offer services to the families during 2014. These include informal settlements, farms, work quarters, orphanages, rooms, flats and houses. Figure 4: Setting where home visits have taken place

Dwelling 3,5%

2% 2% 5,5% Flat House

12%

Informal Settlement Room

15%

Farm/kraal 60%

Work quarters Orphanage

The following figure shows the spread of home languages amongst the families who received HI HOPES services in 2014. In both KwaZulu Natal and Gauteng, isiZulu was the dominant language, and in the Western Cape the dominant language was isiXhosa. Figure 5: Breakdown of Home Language

WITS HI HOPES ANNUAL REPORT 2014 3.1.4 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-refer to HI HOPES through information that they gain via word of mouth, the HI HOPES website or the media. In all provinces in 2014, the vast majority of referrals came from government hospitals, at a national average of 84%. Figure 6: Referral sources for 2014

Healthcare 16%

Private Public

84%

3.1.5 Age of referrals Despite clear evidence of the importance of early intervention, as close to birth as possible, HI HOPES is still receiving referrals of deaf children far too late. Infant referrals should be the norm, but sadly is not always the case. 72.5% of families who received HI HOPES services during 2014 were not offered hearing screening when their child was born. Although our youngest referral for 2014 was 4 weeks old, late referrals continue to make up a large percentage of statistics. The oldest referral in 2014 was a child of 8 years of age. The average age, nationally, for when babies started receiving intervention from HI HOPES was 36 months. Figure 7: HI HOPES families offered hearing screening at the birth of their child

Birth Screening 15%

12,5%

Yes No Unknown

72,5%

WITS HI HOPES ANNUAL REPORT 2014

Late identification of hearing loss is an area of great concern for us and we continue working with the government on policy development so that it will become mandatory to carry out new born hearing screening in the foreseeable future. Consultations have begun with the Netcare group of hospitals to make newborn hearing screening mandatory in all their hospitals and we hope to extend this model to other groups of hospitals in the future. Work was also done with HIVSA on a large health screening programme. This was piloted at an initial site in the Sedibeng region and will be extended to 10 Early Childhood Development sites in the future to screen over 1000 children for various health related issues. A checklist for communication and hearing was included so that the children could be promptly referred for the appropriate screening, testing and intervention if concerns were raised. 3.1.6 Cause of hearing loss The cause of the hearing loss was unknown in 60% of the referrals to HI HOPES. Both prematurity and genetic or hereditary factors were each identified at 9% as the cause of the hearing loss in the referrals during 2014. Figure 8: The causes of hearing loss of babies referred to HI HOPES in 2014.

Cause of Hearing Loss 70% 60% 50% 40% 30% 20% 10% 0%

3.2

60%

Total numbers of families supported

As the younger babies who register with the HI HOPES programme receive intervention services until they are three years old, each province starts the year with some children who were registered in prior years. These figures were added to the total of new referrals in 2014 to provide the total number of children actively supported by HI HOPES during the year. The following chart shows the provincial breakdown of the 233 families supported by HI HOPES in each province during 2014.

WITS HI HOPES ANNUAL REPORT 2014 Figure 9: Total number of families supported per province

3.3

Language Development

HI HOPES tracks the language development progress of the children in the programme using the Language Development Scale (LDS). During 2014, at the initial language assessment the children were an average chronological age of 23.7 months (the youngest was 2 months old and the oldest was 48 months). They had an average language delay of 12.4 months, indicating that they were more than a year behind their typical hearing peers in language development when they started with the HI HOPES programme. Analysis of the Language Development Scale for the children who had more than one assessment completed shows an average of 1.5 months improvement in receptive language and 1.1 months improvement in expressive language for every month of time that passed, thereby reducing delays in language development. This is consistent with the aim of the HI HOPES intervention programme that there is one month of language development for every month of intervention. The following graph shows the average language development of the children supported by HI HOPES in 2014 with a significant reduction in language delay by the 4th language assessment. Figure 10: Average language development over the intervention with assessments done every 4 months.

Language Development

Months

40 35 30 25 20

Chronological Age

Language Age

10 5 0 Assessment Assessment Assessment Assessment 1 2 3 4

mon 9

WITS HI HOPES ANNUAL REPORT 2014 4. Home Interventionists As stated previously, HI HOPES has two teams of trained interventionists, the Parent Advisor and the Deaf Mentor.

4.1

Parent Advisors

There are 133 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

Male Female Kwa Zulu Natal Male Female Western Cape Male Female Eastern Cape (pilot Male programme) Female Total

4.2

Black 6 43 0 7 1 12 0 6 75

Coloured 0 0 0 0 0 14 0 0 14

Indian 0 8 1 6 0 0 0 0 15

White 0 14 1 7 1 5 0 1 29

Total 6 65 2 20 2 31 0 7 133

Deaf Mentors

There are a total of 50 trained and active Deaf Mentors 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 4 9 6 5 3 3 30

Coloured 0 3 0 0 0 0 3

Indian 0 3 0 0 0 0 3

Chinese 0 1 0 0 0 0 1

White 2 3 0 0 2 6 13

Total 6 19 6 5 5 9 50

One of the strengths of the HI HOPES programme is that the Deaf Mentor team consists of members who either sign, speak or use total communication, as well as 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. During 2014 a Deaf Mentor supervisor, Leigh Coetzee, was appointed for the KZN province to function in the same way as the Gauteng Deaf Mentor supervisor, Deanna Klug-Price. This makes the provincial Deaf Mentor programme more effective with local hands on training and coordination taking place. This model will be expanded into the Western Cape during 2015.

WITS HI HOPES ANNUAL REPORT 2014 5. Training and workshops 5.1

Training Trainers

To enhance independence and sustainability the groundwork was laid during 2013 for HI HOPES to begin training local trainers to reduce dependence on the international trainers for the training of new Parent Advisors. This is critical as HI HOPES expands into the other provinces and trains Parent Advisors and Deaf Mentors in those areas. Three trained, experienced interventionists (one from each province) who have the potential to become qualified local HI HOPES trainers with Professor Claudine Störbeck, were selected. Elsefie Wranz from the Western Cape began the training in 2012 and participated in the previous trainthe-trainer course. Naomi Thurtell (from KwaZulu Natal) and Kerryn Arteiro (from Gauteng) participated in the train-the-trainer course held in January 2014. All three selected trainers have been Parent Advisors for many years as well as being part of the mentoring team that works on improving the quality of our Parent Advisors’ work in the homes. The train-the-trainer course was run alongside the training course for Parent Advisors by Dr Paula Pittman, the international Ski-Hi trainer and Professor Claudine Störbeck, Director of the Centre for Deaf Studies. These three new South African trainers completed their training with flying colours and qualified to be part of the new South African training team.

The new South African training team consisting of Kerryn Arteiro, Elsefie Wranz, Naomi Thurtell and Claudine Störbeck.

5.2

Parent Advisors and Deaf Mentors

There are several gap areas where we are unable to provide services because we do not have interventionists in those areas. The recruitment of new interventionists took place during 2014, with many people applying to be trained as either a Parent Advisor or Deaf Mentor. CVs were scrutinised, interviews were held and each potential Parent Advisor trainee presented a lesson on how the ear works. This assessed their ability to learn new information and present it in such a way that the families who have deaf babies can learn from them. Those who passed these stringent criteria were invited to attend the training courses held in January and October 2014. 38 trainees completed the Parent Advisor training courses and 20 completed the Deaf Mentor training. The Parent Advisor training courses were run by Dr. Paula Pittman, the international trainer for SKI-HI (the American equivalent of HI HOPES), and Professor Claudine Störbeck, the Director of the Centre for Deaf Studies. The Deaf Mentor training was run by Deanna Klug-Price who is a Head of Department at St Vincent’s School for the Deaf and the HI HOPES Deaf The new parent advisors trained in January 2014 Mentor Coordinator.

WITS HI HOPES ANNUAL REPORT 2014 5.3

Workshops

Workshops form an integral part of the HI HOPES continuing education programme and enable 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 needs arise. Some Parent Advisors make enormous sacrifices to get to the workshops, travelling great distances for many hours. The team members are commended for this and workshops are used to affirm their commitment and dedication. 5.3.1 Western Cape In the Western Cape four meetings were held for the Parent Advisors during 2014. Themes and topics covered included: Auditory Verbal Therapy by Warren Estabrooks from the Carel du Toit centre; Cerebral Palsy by Susan Lotz, a physiotherapist; Care for the caregivers by Dr. Lydia Van Vuuren and Augmentative and Alternative communication by Cornellie Strydom, a speech therapist from Stellenbosch University. 5.3.2 Gauteng Four workshops were held in Gauteng in 2014 to further equip the Parent Advisors. Topics covered included: In depth training on the administration of the Language Development Scales assessment tool by Selvarani Moodley, our paediatric audiologist; Augmentative and Alternative communication by Katherine Schie, a speech therapist from Chris Hani Baragwanath Hospital; Cerebral Palsy by Dr. Gillian Saloojee, a physiotherapist who started the Malamulele programme and a report back from the team who climbed Kilimanjaro in aid of deaf children combined with the end of year team building exercises.

5.3.3 KwaZulu Natal Some Parent Advisors or Deaf Mentors travelled more than 300kms to get to workshops in KwaZulu Natal. Workshop topics included in depth training on the administration of the Language Development Scales assessment tool by Naomi Thurtell, speech therapist and experienced parent advisor and mentor; Hearing Aids and types and cause of hearing loss run by the audiology and speech therapy department at Greyâ&#x20AC;&#x2122;s hospital and a panel discussion with families who have deaf infants sharing some of their joys, struggles and what they found helpful when raising a child with a hearing loss.

6. Mentoring The mentoring team provide quality control and individualised support to the Parent Advisors. Numerous mentoring sessions were done through individual meetings, telephonic and email contact. Mentoring was provided when Parent Advisors needed additional information or questions arose for specific families and included suitable topic choices for home visits. One-on-one mentoring home visits occurred where mentors accompanied the individual Parent Advisors to visit a family to give specific guidance and individualised support to improve their skills as interventionists in the home. 12

WITS HI HOPES ANNUAL REPORT 2014 7. The National Team A meeting of the national team was held at the HI HOPES Head Office at the Centre for Deaf Studies, Wits University in Johannesburg during November 2014. All the Provincial Coordinators attended, along with the other members of the national team. These national meetings are crucial as the geographically spread out team is in need of face-to-face time, during which challenges and questions are addressed and strategic goals are set. During 2014, Renee de Villiers, the Western Cape Coordinator resigned. Suitable candidates were interviewed for this position and in October Darlene De Jager was appointed as the HI HOPES Coordinator in the Western Cape. Darlene has many years of experience working in the NGO sector and has been working part time as a HI HOPES Parent Advisor for for 6 years. She has a Masters degree in Education and is really looking forward to making a difference to families who have deaf babies.

Claudine Stรถrbeck Director

Sel Moodley Audiologist Researcher

Darlene de Jager Western Cape Coordinator

Carla Zille Gauteng Coordinator

Elizabeth Mathlole Head Office Secretary

Dianne Goring KZN Coordinator

Yvette Vivian Acting National Coordinator

WITS HI HOPES ANNUAL REPORT 2014 8.

Outreach, Marketing and Development

Due to the fact that HI HOPES is a wholly community-based project, with our early interventionists supporting families in their local neighbourhood, it is a top priority for us to reach out in these 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 Early Childhood Development sector) as well as on an ad hoc basis whenever we are invited to meet a specific need.

8.1

Gauteng Presentations on HI HOPES and deafness were given to Afrika Tikkun and the new community service audiologists in the province. Relationships were established with other organisations providing services to children with special needs like Afrika Tikkun, we.can.talk, Little Gems, the Special Needs Forum, DeafSA, private audiologists, St Vincent’s school for the deaf, the ECD forum and SASSA. Many contacts were made with state and private audiologists via email and appointments, to explain the services that HI HOPES offers and to invite referrals.

8.2

Western Cape A presentation on HI HOPES and deafness was given at the Community Based Clinics to promote awareness and encourage referrals. Relationships were established with other organisations providing services to children with special needs such as the Department of Social Development, DeafNet, Carel Du Toit Centre, Sombambisana Community project and the National Institute of the Deaf. Visits were made to the Tygerberg and Red Cross hospitals to foster collaboration.

8.3

KwaZulu Natal Presentations on HI HOPES were given to the Durban Cochlear Implant Programme; Embury teaching training college; Grey’s Hospital; the Disability forum and St Martin de Porres School to raise awareness of the services that HI HOPES offers and to encourage referrals. Relationships were established with other organisations providing services to children with special needs like the Sive School, VN Naik School, Fulton School for the Deaf and KwaThintwa School.

8.4.

On a National Level As a community-based project, HI HOPES relies solely on donations and grants, and to this end, marketing and development are critical on a national level. This includes:  The HI HOPES website which informs audiologists, donors and parents about HI HOPES. Activities are updated regularly and the website includes a donation button for any visitor who would like to support HI HOPES financially. This can be found at www.hihopes.co.za.  Electronic media includes the HI HOPES Facebook page and Twitter feed. Our “supporters” and “followers” have been increasing monthly. A regular e-newsletter is sent out to the HI HOPES supporters who have signed up for it.  An awareness of infant hearing loss poster was funded by the Western Cape Department of Social Development and have been distributed to hospitals and clinics within the public health sector.

WITS HI HOPES ANNUAL REPORT 2014 ď&#x201A;ˇ

Translations of the HI HOPES handouts and visuals- Providing services to families in their home language and culture is a priority at HI HOPES. Translating the handouts and visuals shared with families into isiXhosa, Afrikaans, isiZulu and Sesotho was continued in 2014. This is a mammoth task with over 1000 pages needing to be translated, redesigned and printed. The Afrikaans and isiXhosa versions were distributed with the Sesotho and isiZulu ones to follow shortly. The Department of Social Development funded this important contribution to the culturally sensitive, family-centred services that HI HOPES offers.

HI HOPES is extremely grateful to all the donors (individuals, trusts, government departments and the corporate sector) who support our deaf babies, 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 receiving our annual reports, donors are able to visit us to see the work we are doing at any time. A list of all 2014 donors appears in Appendix C. The Centre for Deaf Studies staff

9. Conclusion During 2014 HI HOPES celebrated being the community outreach arm of the Centre for Deaf Studies which has been in existence for 15 years and was acknowledged by the University of the Witwatersrand as a â&#x20AC;&#x2DC;Centre for Excellenceâ&#x20AC;&#x2122; in this highly specialised field. HI HOPES has grown over 300% over the past 8 years, and has supported more than 1400 deaf babies and their families. 2014 saw the consolidation and strengthening of the programme in the Western Cape, Gauteng and KwaZulu Natal provinces. Plans are afoot to expand into the Limpopo province and donor funding has been committed to enable this exciting expansion to take place during 2015. Along with this growth comes an increase in the need for responsibility, accountability and transparency. We rise to this challenge and ensure that the services of HI HOPES continue to improve in quality, both in terms of services provided as well as child and family outcomes. We continue to collect data as part of the HI HOPES longitudinal research project to both share our findings and learn 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 programme. 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 has contributed to building the enviable ethical and professional reputation of HI HOPES.

Leah Slater wearing her cochlear implant

WITS HI HOPES ANNUAL REPORT 2014 Appendix A: Audit report

WITS HI HOPES ANNUAL REPORT 2014

WITS HI HOPES ANNUAL REPORT 2014 Appendix B: Family Stories Yahushwa Yahushua was born prematurely at 26 weeks and weighed only 1 Kg. Within the first few weeks of his life he had heart surgery followed by hernia surgery. He was on life support and oxygen for 2 months. Large amounts of antibiotics were administered to combat the infections he caught. At one point his weight dropped to 500 grams! Clearly this little boy was a survivor. Yahushua’s profound bilateral hearing loss was identified at 10 months of age and he received hearing aids immediately. The family were advised that their son would be an ideal candidate for a Cochlear Implant so they were encouraged to raise the money for this. Unfortunately they were also told not to communicate with their child in Sign Language in spite of the fact that it took 4 years for them to raise enough money. After his implant he was enrolled at a specialist school using oral communication. He did not progress well and his mom decided to school him at home. His mother heard about HI HOPES from another mother who was receiving services. Carla, their Parent Advisor did her first visit when Yahushua was 5 years and 3 months old and Yahushua presented with no language, neither oral nor signed. He used gestures with lots of screaming to communicate. Sometimes he just screamed to get attention and was frequently frustrated. The family were finding it really challenging not being able to communicate. Their Parent Advisor shared information on the importance of language and how language is learnt in the brain and that spoken English or Sign Language are different expressions of language. If Sign Language was the only way Yahushua could currently receive information and express himself then it was essential that he be given access to it. It was also stressed that the family continue talking at the same time as the family really wanted Yahushwa to learn to speak. A Deaf Mentor was introduced to this family and the family started to learn Sign Language. It was a slow process in the beginning but Yahushwa’s siblings were quick to learn. With the help of the Deaf Mentor and support from the Parent Advisor the family slowly learnt ways of communicating with their son and he began to learn to communicate his wants and needs – and delighted in being understood. His mother reported that since learning Sign Language his oral language had improved considerably. His Speech Therapist indicated that his Language ability doubled within a year! Due to Yahushua’s age only short term intervention was offered to this family, but his transformation to a happier less frustrated child was remarkable in that short time. Mom expressed her desire to continue home schooling and using Sign Language until Yahushua could communicate sufficiently orally. Yahushua with his Parent Advisor and his Deaf Mentor

WITS HI HOPES ANNUAL REPORT 2014 Kayley A letter from a mother… I want to give thanks to Hi Hopes and Leigh, our Parent Advisor who visited us. I'm a single mum and have been doing everything for my children on my own. My son is only one and a half and Kayley, my daughter is three years old. It has been a really hard road for us but thanks to the Hi Hopes programme I've learnt so much. I'm so proud of myself and my daughter Kayley. She has a profound hearing loss and we only picked this up when she was two years old. Our Parent Advisor helped me in every way. She wasn't just a parent advisor teaching me how to help Kayley, she became my friend. She was just a phone call or a text away when I needed assistance or guidance. She would always motive me and encourage me so that I could be there for Kayley.

Kayley Chetty with her mom, Leshni

When I started meeting with Leigh, Kayley was 18 months behind with her language and today she is only 13 months behind. The programme has helped me cope not only with Kayley but also with being a single mum. I can't express how thankful I am to Hi Hopes for this wonderful programme and for an amazing and very helpful parent advisor. Without this programme and Leigh I would have never been able to help my child and would have never become a better mum. Kayley is going to school next year and it bring tears to my eyes seeing her all grown up and communicating more and more each day using Sign Language. Thank you so much, from the bottom of my heart, for everything you have done for my family. Leshni Chetty

Chanjay When Chanjay was born he aspirated meconium and was transported to Groote Schuur Hospital via helicopter and then to the Red Cross hospital by ambulance the following day. When he was a year old his parents began to suspect that he may have a hearing loss. This was formally diagnosed as a bilateral severe to profound sensorineural hearing loss at 19 months of age. He was fitted with hearing aids by the Red Cross Hospital at 26 months of age and referred to HI HOPES.

Chanjay and his Mom

Chanjay’s dedicated parent advisor, Anneke, would drive 160 kilometers every second week to see the family as they lived in White City, Saldanha Bay. The discussed topics including Aural Oral Language, turn taking and literacy. They included a book corner as Chanjay loved reading books. They moved onto topics like early auditory learning, following instructions, understanding prepositions, discipline and play and concept development using the natural environment and routines in the home.

Chanjay’s language delay was 14 months when he started the programme and during the intervention Chanjay gained one month of language for every month of life, thereby halting the development of further language delays. Chanjay graduated out of HI HOPES when was three years of age and had received 19 visits from his Parent Advisor. He attends the Nuwe Hoop School in Worcester for children who are deaf or hard of hearing. He is doing extremely well at school and his mother is extremely proud of her son.

WITS HI HOPES ANNUAL REPORT 2014 Appendix C: 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 have donated their time and skills to HI HOPES over many years. We have been working together since the inception of HI HOPES, and their input in the training and mentoring is greatly appreciated. We are extremely grateful to the following donors who supported and made donations to HI HOPES in 2014:

Organisations Anglo American Chairman’s Fund ApexHi Charitable Trust Carl & Emily Fuchs Foundation The Elma Foundation Health Professions Art Group Jim Joel/Childwick Trust Mary Slack and Daughters Momentum RB Haggart Trust Red Cap Foundation Remarkable World Philanthropy Rotary Foundation Social Development GT Social Development WC Wispeco Aluminium

Individuals Anthony, SRA (Dr) Arteiro, Kerryn (Ms) Birdseys and the Kilimanjaro climb Bricker, HH Bricker, Nadine (Ms) Burger, Christo and his supporters on Doit4charity Clowes, Richard (Mr) Dowsley, Jimmy (Mr) Dulabh, Harshila Revjee (Ms)

Individuals Continued

Cyclists

Eliasov, Ariel Simon (Mr) Eva, Catherine (Ms) Fatsilidis, Penny (Cirrus health care) Fedler, Carolyn (Dr) Fisher, Catherine Anne (Ms) Fisher, Jeffrey Barry (Mr) Fitton, J (Ms) Galane, Lesiba (Ms) Godson, Phillip (Mr) Gundersen, R E (Mr) Hamilton, HJ (Dr) Hurliman, Vanessa Kopelwitz, Andy (Mr) Laidlaw, Marisa & Doit4charity supporters Magugu, Pumla (Ms) Martin, David (Mr) McCallum, Sheila (Ms) Moodley, Sel (Ms) Myschool card users Pitt, Charles and Doit4charity supporters Schlemmer, Kurt (Dr) Seekola, Gabriella (Ms) Smith, Justine and Doit4charity supporters TIB and Tuttle, Mark (Mr) Turner, JM (Ms) Weisz, Lynn (Ms) Widmonte, Julie (Mrs) Young, Alys (Prof) Zille, HH (Ms)

Becker, John & Robyn Chapman, Keith Cokayne, Jedd Erasmus, Rudolph Godson, Philip Gunderson, Richard Hall Jones, Chris Hoosen, Faheem Jackson, Kim James, Butch Jeary, Gareth Jeary, Hayley Kotting, Leon Lee, Brett Lord, Richard Mungle, Chris Murray, Andrew Neil, Grant Smith, Paul Struweg, Faan Strydom, Charl Tarr, Julie & Wayne Taylor-Smith, Justine Thorpe, Robin Tostee, Marc Tuttle, Mark Uniacke, Chris Wilken, Riekert Woudberg, Francois

Claudine Störbeck, Helen Zille and some of our cyclists model the donated cycling kit worn as they rode the Cape Town Cycle Tour / Argus for our deaf babies. A big thank you to Mark Tuttle from TIB for donating the kit.

HI HOPES ANNUAL REPORT 2014 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. 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. 4. 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.