Category: Resourceful Young Children | Test population-based models of provision | 1 March, 2013 - 13:05← BACK
In South Africa, it is estimated that 17 babies are born daily with some form of hearing loss. Unfortunately, hearing loss is commonly not diagnosed early enough, and once identified families don’t receive holistic support to deal with their hard of hearing / deaf child. The impact of undetected or late detected hearing loss is significant on both the child and family. When a child’s language, socio-emotional, and cognitive development are hindered by hearing loss it has a long-term negative impacts on schooling and later employability. Over 70% of deaf adults are currently unemployed.
This situation prevails because there are poor guiding policies, and a lack of sufficient funding for screening and identifying disabilities soon after birth. There are also few resources available to support early intervention for children and their families impacted by hearing loss.
Ideally, with the correct policies and funding in place, all infants would be screened directly after birth (no later than 6 weeks), diagnosed, identified and signed up to the appropriate intervention programs no later than after 3-6 months. The goal of such early intervention would be to prepare and support families with the knowledge and holistic skills needed to deal with a child with hearing loss and other associated disabilities. Such families need to be informed and empowered with the necessary information on how to live and communicate with a child who has hearing loss.
The purpose of HI HOPES is to address the lack of holistic early intervention services accessible to all sectors of the population. We aim to support, inform and empower families in an unbiased way to make informed decisions about their children; and to give these children the opportunity to reach all the appropriate language and developmental milestones that would enable them to become fully-functional adults.
Our program strategy
Our strategy is to provide personalised, home-based, early intervention support to families with a hard of hearing or deaf child. We employ locally trained interventionists (Parent Advisors) who visit each family for one hour fortnightly, and who give individualised program support regarding the child and the family’s needs, in the home language of the household.
HI HOPES is implemented across 3 South African provinces (Gauteng, KwaZulu Natal and the Western Cape), serving over 630 families and their children with hearing loss. We have 133 trained parent advisors and 50 trained deaf mentors, and we use a modified version of the internationally acclaimed SKI-HI early intervention program. Some of the visuals have provisionally been translated into Xhosa and Afrikaans to better serve our target families.
Our strategic aim is to provide unbiased, comprehensive information, skills and support to families with a deaf child that empowers them to make informed choices about their child’s development. This allows parents/guardians to become the chief advocate and support system in their child’s life, despite their disability. HI HOPES is structured to meet a set of short, medium and long-term outcomes.
Tracking progress and maintaining quality implementation
In order to ensure that we maintain the quality of our intervention standards we developed a quality assurance strategy, which involves carefully mentoring each Parent Advisor. Each household and Parent Advisor is also required to submit a quarterly assessment so that we can track the developmental progress of every child in our program.
We have established a longitudinal database on which all demographic, audiological and developmental information is logged and stored. Longitudinal research is conducted on all aspects of the program, including parent satisfaction and children outcomes, to inform future development of the program.
Implications for other implementers
We have learned a great deal throughout the five years of our early intervention program, especially the importance of spending time reflecting on what we do, documenting our progress, and using this information to plan strategically for the future.
There are 6 key lessons that we can share with others about various aspects of our program implementation:
1. Lessons in starting a program from scratch
2. Lessons on scaling up
Scaling up the growth and implementation of the program has been different in each of the three provinces. Each province has its own “culture” and prevailing views of deafness. It is critical to get local buy in as well as a local person to take on the driving role before launching the program in a new province. We have learned that once a program is launched in a new province we need to spend sufficient time afterwards to support it.
3. Lessons on recruiting and training the interventionists / parent advisors
It has been difficult to attract parent advisors because the concept of ‘early intervention’ is still largely misunderstood. Initially, we used traditional media sources to advertise our training and attract parent advisors, but we have had more success recruiting through ‘word of mouth’ and local community projects that work with children. Our recruitment strategy involves first screening candidates CVs for the appropriate qualifications or work experience, and then inviting them for an intensive face-to-face interview.
Retaining parent advisors has also provided some key lessons. Early on, we did not screen applicants sufficiently and so we trained people who were poorly motivated and not the right individuals for the job. At first, we kept them on board and tried to re-train them, support and adjust to these individuals’ needs, but we quickly realised that this was inefficient and jeopardised the success of the program. However, we have also learned that commitment should be valued and that it is worth investing in parent advisors who show strong potential, even if they are less experienced or immature.
4. Lessons on getting government buy-in and funding
Although we have met with national government (education, social development and health) regarding our plan, in terms of implementation and support we have been advised to always work with provincial government. In 2 of our implementation provinces we have had to show progress and results before they would fund us, in 1 province we have not had any success in even getting a reply.
5. Lessons on dealing with poor policy
No formal policies exists to govern home-based early intervention care and support for families with hard of hearing or deaf children. Despite this, we work towards developing best practices and so we use international guidelines to assist us in this.
Although we are focussed on early intervention we have spent much of our time creating awareness and lobbying for better screening and identification services. This has meant partnering with other stakeholders responsible for early diagnosis and for screening.
6. Lessons on marketing / creating awareness
If we are to better serves the health care system, clinics, hospitals, and other professionals need to know about our service and what we do so that they can refer babies and families to us. As such, it is vital that we better market our program and create more awareness of how we can help service families dealing with a deaf child hearing loss.
To do this we have:
27 St Andrews Street, Parktown, Johannesburg
(011) 717 3750
The HI HOPES program at the Wits Centre for Deaf Studies provides lessons on starting from scratch a home-based, early intervention program for families with a deaf child. Included are key tips on how to deal with starting up, recruiting and training parent advisors, getting government buy-in and funding, dealing with poor policy, scaling up, and marketing one’s program.