HI HOPES Annual Report 2015

WITS HI HOPES Early Intervention for families with babies who are deaf or hard of hearing

Home Intervention Hearing and Language Opportunities Parent Education Services

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.

Amiya

Amyoli Blake (left) and his brother

Xian and his dad

Banele with her mom

Joseph and his mom

WITS HI HOPES ANNUAL REPORT 2015

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2015 Annual Report

1. Introduction .......................................................................................................................................... 3

2. Why Early Intervention? ....................................................................................................................... 4

3. HI HOPES Families and Infants Supported during 2015 ........................................................................ 4

3.1 Referrals ........................................................................................................................................ 4

3.1.1 Gender .................................................................................................................................. 5

3.1.2 Race ....................................................................................................................................... 6

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

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

3.1.5 Age of referrals ..................................................................................................................... 8

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

3.2 Total numbers of families supported ............................................................................................ 9

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

4. Home Intervention teams ................................................................................................................... 10

4.1 The Home Interventionist ........................................................................................................... 10

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

5. Training and workshops ...................................................................................................................... 11

5.1 Home Interventionists and Deaf Mentors .................................................................................. 11

5.2 Workshops .................................................................................................................................. 11

6. Mentoring ........................................................................................................................................... 12

7. The National Team .............................................................................................................................. 12

8. Outreach, Marketing and Development ............................................................................................. 13

9. Thrive .................................................................................................................................................. 14

10. Conclusion ........................................................................................................................................... 15

Appendix A: Audit report ............................................................................................................................ 16

Appendix B: Family Stories ......................................................................................................................... 18

Appendix C: Thank you ............................................................................................................................... 20

Appendix D: References and Publications .................................................................................................. 21


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1. Introduction HI HOPES early intervention services are provided to families by trained Home Interventionists who are community based. 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 challenging 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 choices are then supported by the coordinated team of trained interventionists. In addition to the Home Interventionist, 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 may choose to speak; use Sign Language or a combination of both). 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, Sign language or Total Communication.

Tyler


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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 started before the age of six months, children with hearing loss will develop typically and on par with hearing children. 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 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 distinct influence on the developmental outcomes of any child, and thus the family-centred focus of HI HOPES (working with families in a partnership) is a marked 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 2015 The following section presents an overview of the work of HI HOPES in its 9th year of running (2015).

3.1 Referrals Since inception in 2006, HI HOPES has offered early intervention services to over 1600 families who have a child with a hearing loss. In 2015, the number of referrals was 207, of which 71 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. Some of the families referred to HI HOPES could not be contacted as they had either moved or cell phone numbers had changed.


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Figure 1: Referrals to HI HOPES since its inception by province

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 2015 year and 15 who registered at the end of 2014, but only started receiving services in 2015.

3.1.1 Gender Nationally in 2015 there was a higher percentage of males (62%), compared to females (38%) receiving services from HI HOPES. In all provinces, except the Limpopo province, where more females than males were referred.

Figure 2: Distribution of families receiving services by gender across the three provinces

0

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1658 families referred to HI HOPES since 2006

GT

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EC

Limpopo

0%

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60%

70%

GT KZN WC Limpopo

Gender

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3.1.2 Race The majority of families receiving services in all of the provinces in 2015 were Black, 73% nationally. The Western Cape offered services to a significant proportion of Coloured families (46%). The split between the race groups in all provinces is largely reflective of the population demographics for each region. Figure 3: Percentage of families receiving services by race in each province

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 2015. These include informal settlements, farms, work quarters, orphanages, rooms, flats and houses. Figure 4: Setting where home visits have taken place

86% 82%

51%

100%

6%

46%

2%13%

6% 5% 3%

0%

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40%

60%

80%

100%

GT KZN WC Limpopo

Ethnicity

Black

Coloured

Indian

White

0%

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80%

100%

Dwelling

GT

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Limpopo


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The following figure shows the spread of home languages amongst the families who received HI HOPES services in 2015. In both KwaZulu Natal and Gauteng, isiZulu was the dominant language, in the Western Cape the dominant language was isiXhosa and in Limpopo it was Sepedi. Figure 5: Breakdown of Home Language

3.1.4 Referral sources Babies are referred to HI HOPES 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 2015, the vast majority of referrals came from government hospitals, at a national average of 88%. Figure 6: Referral sources for 2015

88%

12%

Healthcare

Public

Private

0%

5%

10%

15%

20%

25%

30%

Home Language


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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 2015 were not offered hearing screening when their child was born. Although our youngest referral for 2015 was 4 weeks old, late referrals continue to make up a large percentage of statistics. The oldest referral in 2015 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 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 continue 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.

3.1.6 Cause of hearing loss The cause of the hearing loss was unknown in 57% of the referrals to HI HOPES. Both meningitis and genetic or hereditary factors were each identified at 9% as the cause of the hearing loss in the referrals during 2015. In 7% of children referred to HI HOPES in 2015 prematurity was noted as the cause of the hearing loss. Figure 8: The causes of hearing loss of babies referred to HI HOPES in 2014.

12,5%

72,5%

15%

Birth Screening

Yes

No

Unknown

0%10%20%30%40%50%60%70%

Cause of Hearing Loss


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3.2 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 2015 to provide the total number of children actively supported by HI HOPES during the year. The following chart shows the provincial breakdown of the 207 families supported by HI HOPES in each province during 2015. 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 2015, at the initial language assessment the children were an average chronological age of 15 months (the youngest was 4 months old and the oldest was 32 months). They had an average language delay of 8 months, indicating that they were 8 months 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 1.1 month’s improvement in receptive language and 1.1 month’s improvement in expressive language for every month of time that passed, thereby preventing further delays in language development. This is consistent with the aim of the HI HOPES intervention programme that there is at least 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 2015. Figure 10: Average language development over the intervention with assessments done every 4 months.

Gauteng

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Families Supported

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Limpopo

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Assessment 1 Assessment2 Assessment 3

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Chronological Age

Language Age

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4. Home Intervention teams As stated previously, HI HOPES offers a home intervention team consisting of the Home Interventionist and the Deaf Mentor.

4.1 The Home Interventionist There are 133 Home Interventionists nationally. The breakdown in each province by race and gender follows. Table 1: Provincial distribution of Home Interventionists by gender and race

Black Coloured Indian White Total

Gauteng Male 6 0 0 0 6

Female 43 0 8 14 65

Kwa Zulu Natal Male 0 0 1 1 2

Female 7 0 6 7 20

Western Cape Male 1 0 0 1 2

Female 12 14 0 5 31

Eastern Cape (pilot programme)

Male 0 0 0 0 0

Female 6 0 0 1 7

Limpopo Male 1 0 0 0 1

Female 11 0 0 0 11

Total 87 14 15 29 145

4.2 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

Black Coloured Indian Chinese White Total Gauteng Male 4 0 0 0 2 6

Female 9 3 3 1 3 19 Kwa Zulu Natal Male 6 0 0 0 0 6

Female 5 0 0 0 0 5 Western Cape Male 3 0 0 0 2 5

Female 3 0 0 0 6 9 Limpopo Male 4 0 0 0 0 4

Female 6 0 0 0 1 7 Total 40 3 3 1 14 61


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The South African Early Interventionist

training team consisting of Naomi Thurtell,

Claudine Störbeck, Kerryn Arteiro and Elsefie Wranz.

One of the strengths of the HI HOPES programme is that the Deaf Mentor team consists of members who 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 2015 a Deaf Mentor national coordinator, Wilma Newhoudt-Druchen, was appointed. This makes the National Deaf Mentor programme more effective, with improved over site and strategic planning taking place.

5. Training and workshops

5.1 Home Interventionists and Deaf Mentors Funding was received to expand the HI HOPES Early Intervention Program into the Limpopo Province. The recruitment of new interventionists took place during 2015, with many people applying to be trained as either a Home Interventionist or Deaf Mentor. CVs were scrutinised, interviews were held and each potential trainee presented a lesson on how the ear works to assess 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 July. 21 trainees completed the Home Interventionist training course and 12 completed the Deaf Mentor training. The Home Interventionist training was run by our South African training team consisting of Prof Claudine Störbeck; Elsefie Wranz, Naomi Thurtell and Kerryn Arteiro. 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 Mentor Coordinator in Gauteng.

5.2 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 Home Interventionists 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.

Wilma Newhoudt-Druchen


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5.3.1 Western Cape In the Western Cape four meetings were held for the Home Interventionists during 2015. Themes and topics covered included: the communication triangle by Prof Claudine Storbeck, the director of the programme; basic South African Sign Language by the Deaf Mentor team; communication methodologies by HI HOPES trainer and an Audiologist / Speech and Language Therapist Elsefie Wranz; and Deaf culture by Wilma Newhoudt-Druchen, the new National Deaf Mentor Coordinator.

5.3.2 Gauteng Three workshops were held in Gauteng in 2015 to further equip the Home Interventionists. Topics covered included: In depth training on Audiograms and how to understand levels of hearing loss by Selvarani Moodley, our paediatric audiologist; communication methodologies and how to make appropriate choices; and the value of occupational therapy for special needs children by Likho Bottoman, an occupational therapist. Families with deaf babies were invited to every workshop to share something of their experiences with the team of interventionists.

5.3.3 KwaZulu Natal Some Home Interventionists and Deaf Mentors travelled more than 300kms to get to workshops held at the Fulton School for the Deaf in KwaZulu Natal. Workshop topics included in depth training on the planning of lessons and the critical importance of language development by Prof Claudine Storbeck, the director of the programme; the development of the parent led parent support programme called Thrive by Dr Bianca Birdsey; administrative requirements were addressed and team members were thanked and received gifts of appreciation for all their hard work.

5.3.4 Limpopo The Limpopo province held their first workshop in October after the July training. The focus of the workshop was for the team to meet the national representatives and the local team. Workshop participants went through orientation on the administrative processes of their work as Home Interventionists and also clarified their roles, priorities and responsibilities.

6. Mentoring

The mentoring team consists of experienced and expert Home Interventionists who provide quality control and individualised support to the other Home Interventionists in the provinces. Numerous mentoring sessions were done through individual face to face meetings, telephonic and email contact. Mentoring was provided when Home Interventionists 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 interventionists to visit a family to give specific guidance and individualised support to improve their skills as interventionists in the home.

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 April and October 2015. These national meetings are crucial for functioning effectively 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 2015, Dianne Goring, the KwaZulu Natal Coordinator resigned. Suitable candidates were interviewed for this position and in January Rashni Prithipal was appointed as the HI HOPES Coordinator for KwaZulu Natal. Rashni Is a qualified audiologist with a real heart for families who have deaf babies. She is excited to be making a difference.


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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 the new community service audiologists in the province to inform them on how to refer children to HI HOPES. The Provincial coordinator engaged with other organisations providing services to children with special needs like the Johannesburg Cochlear Implant Group, we.can.talk, the Ear Institute, Ears-like-mine, DeafSA, private audiologists, various school’s 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 Presentations on HI HOPES and paediatric hearing loss were given at 23 Community Health Clinics to promote awareness and encourage referrals. Relationships were established with

other organisations providing services to children with special needs such as Impact Direct Ministries, TEEC Educare, Klein Karoo ECD level 4 students, the University of Cape Town Speech Therapy Students and the Blossom Street Seniors. 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; Albert Luthuli and Ladysmith Hospitals; and the students at the University of KwaZulu Natal to raise awareness of the services that HI HOPES offers and to encourage referrals. Relationships were maintained 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 Limpopo 2015 was the first year that Hi Hopes was introduced in the Limpopo province and relationships were established with the provincial departments of Health, Social Development and Education. Presentations were done at the Seshego, Bela-Bela, Mankweng, Van Velden, Giyani and Elim hospitals and Ndlovu Clinic to inform them of the expansion of Hi Hopes into the province and to encourage referrals of families with deaf babies. Relationships were also established with DEAFSA and the Harvest Institute for the Deaf.

8.5 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.

http://www.hihopes.co.za/


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HI HOPES is extremely grateful to all the donors (individuals, trusts, government departments and the corporate sector) who support our deaf babies. Without their support 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 2015 donors appears in Appendix C.

9. Thrive Thrive is a parent – led support program providing parent-parent support for South African families with children who are d/Deaf or hard of hearing. The journey of parenting a deaf child, starts with a deep seated urgency to make up for lost language development time. Parent’s feel that their dreams have been shattered and they have embarked into an unfamiliar world with endless decisions that need to be made and that are fraught with biased opinions from all angles. Parents often feel overwhelmed and lonely which can be incapacitating. The grief journey is very real for families and the adjustment from seeing their reality through a lens of loss, to experiencing hope that will enlighten their journeys, depends on a variety of factors. One significant factor identified, is that of parent-parent support. Identifying and connecting with parents with whom they can identify, who have asked the same questions and grappled with the same decisions. This helps to reduce loneliness and offers hope for a world where their child can reach their full potential. International surveys have shown that parents consider being supported by and connecting with other parents, as a key factor in embracing and accepting their child and their unique journey. One of the recipients of the HI HOPES Early Intervention service, Dr Bianca Birdsey, mother of three deaf daughters, started the parent-led support group called, THRIVE. The aim of Thrive is to see deaf South African children celebrated and afforded opportunities that allow them to reach their full potential. This is made possible through providing support to families and empowering them to make the best decisions for their individual child whilst nurturing the journey of every family member. This is facilitated by a foundation of excellent communication. The name THRIVE is not an acronym, but rather a word encompassing growth, abundance of life and reaching one’s full potential. All families who receive HI HOPES services will be encouraged to connect with the Thrive arm of our Family Centred Early Intervention model to benefit from meeting with other parents who have similar experiences.


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10. Conclusion During 2015 HI HOPES celebrated being the community outreach arm of the Centre for Deaf Studies which has been in existence for over 15 years. The Centre for Deaf Studies was acknowledged by the University of the Witwatersrand as a ‘Centre for Excellence’ in this highly specialised field.

HI HOPES has grown over 300% over the past 9 years, and has supported more than 1600 deaf babies and their families. 2015 saw the consolidation and strengthening of the programme in the Western Cape, Gauteng and KwaZulu Natal provinces and expansion into the Limpopo province with donor funding. Notable also was the development of the parent-led parent-parent support group for families with deaf or hard of hearing babies called THRIVE. 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. 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 comprehensive data set, that HI HOPES has been collecting since its inception, is now the largest longitudinal data set in Africa. Prof Claudine Störbeck has been appointed a visiting professor at The University of Manchester and Prof Alys Young has been appointed a visiting professor at the Centre for Deaf Studies at the University of the Witwatersrand. Together, using the HI HOPES data set, they have published the first in a series of papers in the highly respected and peer reviewed journal BMC Pediatrics (see Appendix D for the list of articles and conference presentations). Numerous newspaper and magazine articles were written about HI HOPES during 2015 as well as many radio and TV interviews. Information about these can be found on the HI HOPES website. Our biggest asset, as HI HOPES, is our staff (including National and Provincial office staff and all the Home Interventionists 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.


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Appendix A: Audit report


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Appendix B: Family Stories

Margaret Margaret is a bubbly little girl who is 4 years old. She lives with her father and grandmother in Ga-Mashashane, a few kilometres outside Polokwane in the Capricorn District. She was diagnosed with a profound bilateral hearing loss at the age of 18 months and was fitted with hearing aids at Seshego Hospital. The cause of the hearing loss is unknown, but is suspected to have been due to illness as she suffered a number of ear infections from a young age. The HI HOPES intervention started in May 2015 and at this stage Margaret was attending a crèche for typical children and wasn’t wearing her hearing aids fulltime. She communicated mainly through gestures and a little vocalizing. A deaf mentor started visiting the family too and began teaching them Sign Language as they had requested. Margaret has had 10 lessons so far and her language and communication skills have improved immensely. She used to be very shy and withdrawn, but she has grown into a bubbly and friendly little girl who has gained confidence because she can now communicate. The family reports that things have improved because they can now communicate with her. Margaret’s family is currently being assisted with placement in a school for the deaf in the area to ensure continued language development after transitioning out of HI HOPES.

Sbonelo Sbonelo is three years old and lives with his mother, uncles and his grandmother in Orange Farm. He looks like a typical three-year-old – boisterous, fun loving, mischievous and at times defiant, but there is more. He is surrounded by loving faces and supportive people who have turned their lives around to give him the chance of fulfilling his potential. Sbonelo was born with a bilateral hearing loss. His hearing loss was identified early and he received hearing aids just after his first birthday. He was visited by his HI HOPES interventionist regularly and they worked on his language development together as a team. His progress was slow and mom wondered why he wasn’t progressing even though he attended regular speech therapy sessions at his local clinic. He attended audiology appointments regularly and wore his hearing aids at all times. When he was two years old further

testing revealed that his better ear had deteriorated substantially and this meant that sounds he had previously heard were no longer audible. He was then referred into the cochlear implant program at Chris Hani Baragwanath Hospital where he was assessed for a cochlear implant. This journey was particularly difficult for Sbonelo and his family and the decision to go ahead with the implant surgery did not come easily. His mother was determined to give her son the best chance possible, despite all odds, to have access to sound in order to develop speech, as this was their preferred manner of communication. It is very difficult to explain to a typical child why they have to undergo surgery and even harder for a child with a hearing difficulty and delayed language. Sbonelo couldn’t understand why he had to stay in the hospital or why he could not eat or drink before the surgery. Sbonelo is receiving weekly speech therapy at Chris Hani Baragwanath hospital and is learning to listen with his new Cochlear Implant. His family are doing everything in their power to give him the best chance of developing speech. He has been for an assessment at the Children’s Communication Centre and is hoping to be able to attend school there to continue his journey towards oral communication.


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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 HI HOPES and made donations during the year:

Organisations Individuals Continued Cyclists Anglo American Chairman’s Fund Eliasov, Ariel Simon (Mr) Lauren N Angus ApexHi Charitable Trust Fatsilidis, Penny (Cirrus health care) Beerson Baboojee Carl & Emily Fuchs Foundation Faull, Kori Toska (Mr) Rowan Duvel DG Murray Fedler, Carolyn (Dr) Peter John Faber The Elma Foundation Fisher, Catherine Anne (Ms) Jenny Faber FNB Trust services Fisher, Jeffrey Barry (Mr) Philip Godson Health Professions Art Group Fitton, J (Ms) Christopher Hall Jones Jim Joel/Childwick Trust Galane, Lesiba (Ms) Michael A Jacobs Mary Slack & Daughters foundation Godson, Phillip (Mr) Yvette M Joubert Nicarella Maree, Johan (Mr) James Leon Kotting Oppenheimer memorial trust Hamilton, HJ (Dr) Brett Lee Remarkable World Philanthropy Hurliman, Vanessa Michael Lynch Rotary Foundation Kopelwitz, Andy (Mr) Dawn Macnab Social Development GT Lambrechts, Valerie (Ms) Christopher Macnab Social Development WC Magugu, Pumla (Ms) Avendra Maharaj Sivantos Group Martin, David (Mr) Kevin Naidoo

Individuals McCallum, Sheila (Ms) Grant Neill Moodley, Sel (Ms) Margaret O`Connor

Anthony, SRA (Dr) Myschool card users Eugenia Parau Arteiro, Kerryn (Ms) Monk, Jean (Mrs) Ricardo J Parau Ball, RL Rogers, Katherine (Ms) Justin Pitt Bricker, HH & Nadine (Ms) Seekola, Gabriella (Ms) Charles Pitt Brown, Stephen (Mr) Rynberg, Dianna Stephanie (Ms) Arnold Reddy Bauskin, B (Mrs) TIB and Tuttle, Mark (Mr) Paul Rowe CAPCO Turner, Jillian Merle (Ms) Bruce Rowe Clowes, Richard (Mr) Tranid, Sid (Mr) Maria Schoeman Croeser, David Charles (Mr) Zvandikona, AC (Mrs) Danielle Slief Cruickshank, D (Mrs) Young, Alys (Prof) Paul Jeremy Smith Zille, HH (Ms) Stefan Tereblanche Johan Swanepoel David Owen Swanson

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.


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Appendix D

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.

Publications

Peer reviewed journal articles 1. Moodley, S. & Störbeck, C. (2015). Narrative review of EHDI in South Africa. South African Journal of

Communication Disorders, 62 (1), Art. #126, 10 pages. http://dx.doi.org/10.4102/sajcd.v62i1.126 2. Storbeck, C & Young, A. (2015). The HI HOPES data set of deaf children under the age of 6 in South

Africa: maternal suspicion, age of identification and newborn hearing screening. BMC Pediatrics, 16(1), 1. DOI: 10.1186/s12887-016-0574-1

Chapters in books 1. Störbeck, C. & Young, A. (2015). Early Intervention in Challenging National Contexts. In: M.Sass-

Lehrer (Ed). Deaf and Hard of Hearing infants, toddlers and their families: Interdisciplinary Perspectives. Washington, DC: Oxford University Press

National conference presentations 1. Störbeck, C., Birdsey, B. & Strassheim, P (2015). Informed choice & Ethics within the South African

Human Rights landscape. Invited pre-conference seminar. 51st ENT/SAAA/SASLHA Congress, Durban, 31st October – 3 November 2015

2. Störbeck, C. (2015). Prioritising Early Intervention in Developing Countries: Maternal suspicion costs

nothing. 51st ENT/SAAA/SASLHA Congress, Durban, 31st October – 3 November 2015 3. Störbeck, C. (2015). Prioritising Parents’ Choice of Amplification, Language & Communication: A

longitudinal study. 51st ENT/SAAA/SASLHA Congress, Durban, 31st October – 3 November 2015

4. Moodley, S., Birdsey, B. & Störbeck, C. Longitudinal review of a home based early intervention programme. Child Health Priorities Conference – Kwazulu Natal, 3rd to 5th December 2015

International conference presentations 1. Störbeck, C., 2015. Prioritizing Early Intervention in developing countries: Maternal suspicion costs

nothing. The 22nd International Congress on the Education of the Deaf (ICED), Athens, Greece, 13 – 16 July 2015.

2. Musengi, M. & Störbeck, C., 2015. Hearing teachers’ experiences of teaching in residential schools for the Deaf. The 22nd International Congress on the Education of the Deaf (ICED), Athens, Greece, 13 – 16 July 2015.

http://dx.doi.org/10.4102/sajcd.v62i1.126

HI HOPES Annual Report 2015

Documents