DARE TO CARE
KHATALA
Advocacy: Promoting Rights of Children with Intellectual Disabilities
Khatala is an innovative, dynamic project of IMH. It builds social capital within communities, igniting and supporting social networks and promotes and protects the rights of children with intellectual disabilities. It also works closely with families to build their capacity and resilience to care for and support their children.
“Advocacy – to change ‘what is’ into ‘what should be’”
KHATALA HIGHLIGHTS
OCCUPATIONAL THERAPY (OT) & SOCIAL WORK SUPPORT
BRAVE is an acronym for:
B: Bringing families together and encouraging mutual support (this would be the networks)
R: Advocating for Rights (Social work – accessing resources)
A: Achieving optimal independence (home program)
V: Valuing the assets in the family (social work intervention)
E: Ensuring knowledge and insight through educational programmes (Parenting skills training session)
The OT and social workers focused on the implementation of following objectives for Khatala – Brave (social work, occupational therapy, and counseling support given to households in which children with disabilities live):
- Facilitation of educational and therapeutic workshops for caregivers and Wellness Warriors;
- Development and Implementation of home-based stimulation programme for learning partners with mild to moderate intellectual disability range;
- Development and Implementation of home-based stimulation programme for learning partners within severe to profound intellectual disability;
- Procurement of stimulation materials and equipment to accompany the home-based stimulation programmes;
Enrollment of learning partners, assessment of learning partner on the Therapy Assessment Tool and analysis of data;
Home visits with the social workers within the four focus areas.
WORKSHOPS & HOME-BASED PROGRAMME
In September 2022, a workshop was attended by 31 caregivers and 20 Wellness Warriors. The workshop focused on a play-based home stimulation programme for children with intellectual disabilities in the communities. It addressed daily routines, dressing and grooming skills for all levels of disabilities, drooling exercises and motor skills activities that can be incorporated in the daily routine of the learning partner. For both workshops positive feedback was received.
Follow-up household visits were conducted after the workshop to consolidate the techniques learnt. The caregivers had a clear understanding of what was expected and how such activities aid the overall development of the learning partners and in addition, alleviate the behavioural problems in the household.
As a follow up to the workshop in September 2022, we introduced the newly developed home-based stimulation programme. It was held in April 2023 at the community hall in Zwide and was attended by 14 Wellness Warriors and 31 caregivers. During this practical workshop, each Wellness Warrior received 6 home-based stimulation programme kits to distribute amongst the households. Each caregiver received one complete home programme kit to implement at home with the learning partner. The practical nature of this workshop and the excellent participation of the Wellness Warriors, who facilitated the activities, made this workshop a success.
OCCUPATIONAL THERAPY SUPPORT WITHIN THE HOME
Even though some challenges occurred that made home visits a challenging task for the Brave team and the OT, the impact of the work done was evident with each of the follow-up visits.
We followed up on households where improvement was noted regarding; living conditions, learning partners returned to school and care centres, as well as the implementation of a structured routine and the home-based programme stimulation activities. It was also noted that caregivers became more supportive of the needs of the learning partners. For example, attending to medical conditions and external therapy services where they previously defaulted.
Additionally, we are at the stage with visits to new households by the OT and SW for assessments, that the team can simultaneously be introduced and provide the caregiver and learning partner with home-based stimulation programme activities. Caregivers are more eager now to implement the home programme activities with the stimulation materials and equipment provided to them. This positively impacts on the turnaround time for intervention with each learning partner.
ASSISTIVE DEVICES
The OT assisted the social workers to select learning partners with physical disabilities to be assessed for a donation of wheelchairs. A wheelchair/seating clinic was held by a donor to measure and assess the physical needs of each learning partner. Additionally, through the involvement of the Brave team and psycho-social education we provide at each home visit, we realised that more primary caregivers are taking it upon themselves to advocate for appropriate assistive devices for the severe to profound learning partners with severe physical limitations at the local clinics and hospitals. Within the past few months, a number of learning partners received their new wheelchairs from DoH. Khatala Brave OT intervention has reached approximately 226 households through home-based stimulation programmes and home visits. The impact of the abovementioned objectives, and the services provided by Khatala Brave team members with the support of the Wellness Warriors, positively impacted the majority of the households in the project.
In the pursuit of social justice and equal opportunities for all, the Khatala Project embarked on an intensive advocacy campaign last year to address the needs of children living with intellectual disabilities in Gqeberha. With a comprehensive approach encompassing strategic partnerships, awareness programs, and policy influence, the project worked tirelessly to empower and uplift this marginalized community. This article explores the remarkable efforts of the Khatala Project in establishing crucial relations, conducting awareness programs, and championing inclusive education for the benefit of children with intellectual disabilities.
KHATALA ADVOCACY CAMPAIGN 2022
In the pursuit of social justice and equal opportunities for all, the Khatala Project embarked on an intensive advocacy campaign in 2022 to address the needs of children living with intellectual disabilities in Gqeberha. With a comprehensive approach encompassing strategic partnerships, awareness programs, and policy influence, the project worked tirelessly to empower and uplift this marginalized community. This article explores the remarkable efforts of the Khatala Project in establishing crucial relations, conducting awareness programs, and championing inclusive education for the benefit of children with intellectual disabilities.
BUILDING CRUCIAL RELATIONS
Recognizing the significance of collaboration, Khatala prioritized establishing relationships with key stakeholders. Schools governing bodies, clinics, and ward committees were engaged in meaningful partnerships to create a network of support. By working hand in hand with these entities, the project aimed to foster a more inclusive environment for children with intellectual
disabilities. Through open dialogue and cooperation, Khatala laid the groundwork for a collective effort towards positive change.
MULTIPLE AWARENESS PROGRAMS
To raise public consciousness and challenge misconceptions surrounding intellectual disabilities, Khatala conducted multiple awareness programs at project sites. These initiatives focused on dispelling stereotypes and promoting acceptance and inclusion. By educating communities, families, and educators, the project aimed to eliminate stigma associated with intellectual disabilities, fostering a more inclusive society that celebrates the unique abilities of every child.
STAKEHOLDERS ROUND TABLE
In December 2022, Khatala organised a stakeholders round table marking a pivotal moment in its advocacy journey. The event brought together various stakeholders, including government officials, academics, and school principals. This gathering served as a crucial regional platform for the development of strategies to influence government decision-making processes. The collective wisdom and expertise shared during the round table discussions paved the way for potential policy reforms and systemic changes to benefit children with intellectual disabilities.
EMBRACING INCLUSIVE EDUCATION
Looking towards the future, Khatala has adopted inclusive education as a crucial campaign. By promoting inclusive education, the project aims to create educational environments that cater to the diverse needs of children with intellectual disabilities. This approach recognizes the importance of providing appropriate support, accommodations, and resources to ensure that every child has equal access to quality education. By embracing inclusive education, we seek to break barriers and transform the educational landscape for children living with intellectual disabilities.
Khatala’s advocacy campaigns for children with intellectual disabilities has made significant strides in creating a more inclusive and equitable society. Through the establishment of crucial relationships, multiple awareness programs, and a stakeholder round table, the project has laid a strong foundation for systemic change. By prioritizing inclusive education as a crucial campaign moving forward, the Khatala Project continues to champion the rights and well-being of children with intellectual disabilities. It is through these dedicated efforts that we can foster a society where every child, regardless of their abilities, can thrive and fulfill their potential.
WELLNESS WARRIOR – NONKWENKWEZI SKEFILE-MDANISO
I am Nonkwenkwezi Skefile – Mdibaniso, married with 3 children then last born was diagnosed with intellectual disability from birth. We are residing in Chris Hani location, New Brighton; Gqeberha Eastern Cape. As a mother I have learnt that: Children with intellectual disabilities must be cared for by their parents as we serve as their most constant and life-long caregivers, we play a critical role in shaping the development and life experiences of our children with intellectual disabilities. Intellectual disability in children can be very disturbing, requiring proper attention, love, help and support from us as parents. As caregivers of children with intellectual disabilities we have additional responsibilities and roles in caring for them.
Intervention of Khatala Project:
I met the project in 2020, recruited to be a volunteer and what draw my interest is the fact that the project deals with children specifically those with ID. I have learnt many things from the project for my personal development in raising a special child in the household, because you need to induct the family in understanding and knowing that we are fully responsible in: taking care, loving, supporting, accepting and understanding the child as he is special and unique in his own way. I have the support of my husband, siblings to my baby and they love him and accepted that he is special. “A toy is the sweet fragrance in the earth and it is the life of every child”.
SUPPORT & ASSISTANCE
I have attended care giver’s workshops and I learnt that the best way for children to learn, no matter their abilities, is through play. Play is all about discovery and having fun; here are the things that I took home for my child:
Place a variety of toys on a tray or flat surface to stimulate your child.
Record my child playing and show to him.
Take time to do painting and teach him how to hold a brush.
How to hold a spoon.
To teach them to brush his teeth.
Play with dough, either clay or homemade.
I spend some quiet time playing with him simple puzzles or making shape, colour, word or number cards. Using a flat, smooth surface such as a table or tray will make the activity easier for him.
I sing, dance and make noise with my child.