The Rehema Centre
Enabling children and empowering parents within the special needs community in Tigania West, Meru County
Rural life is frequently hard regardless of whether you are disabled or able bodied. With recurring droughts and subsequent famines many parents struggle to feed children, and many children drop from school due to lack of fees. But set within these already challenging conditions, children living with disability also frequently face isolation, abandonment, acute malnutrition, minimal access to medical services, and in many cases, are living in extreme poverty and squalor.
Such children living with disabilities can develop very severe complications as they have not received early intervention. Stigma is also great in the community. Most people do not understand that disability is nobody’s fault; genetic and medical complications have caused the disability in the vast amount of cases. For the last five years Friends of Kianjai Kenya (FKK) have been working alongside Special Needs teachers and health professionals across Tigania West to improve outcomes for these children.We have introduced Community Workshops to educate parents and the wider community, run feeding programs and a mobile physiotherapy clinic– but for some children more is needed.
Children such as Martin; who with Cerebral Palsy and very limited mobility lies in the dirt for hours at a time as he has no assisted aids, and his mother has received no education in how to support him.
Traditionally the parents and guardians of special needs children have received no education or support on how to care for their child. This has been hugely stressful and often overwhelming for the parents involved. We believe that through a child specific health and education program parents and guardians of special needs children will be able to support their children to lead meaningful lives despite their physical and mental limitations.
The Rehema Centre: Enabling children and empowering parents
In 2012 in the name of the Rehema CBO three acres of land was purchased at Kitheo between Miathene and Mikunduri, on which to build a Respite and Outreach Centre for supporting children with complex disabilities and their families. The vision for this Centre is to enable disabled children and to empower their parents. To achieve this vision the Centre will operate as both a Residential Centre and as an Outreach Centre.
The Residential Centre will provide a base at which children with complex medical needs can come for a stay of several weeks; enabling them to be assessed, to have an intervention plan established for both their physical development and educational needs, and to have adapted aids made if appropriate.
During this time the mother’s situation can be assessed, and a personal support plan prepared. Typically, these mothers come from very poor backgrounds, they need educating in matters of family health, hygiene, family planning, and simple budgeting. In addition, most parents have a complete lack of understanding of their child’s disability and need to made aware that the condition has a medical cause. When they understand this fact, huge emotional guilt can drop away. Mothers experience a huge burden caring for their disabled child, and this time at the Centre is intended to help integrate them into a supportive community, and also provide a time of respite for them. It is our intention to then send the mother and child home with education and resources that will improve their ongoing physical and emotional well-being. In some cases, this will hinge on an improved economic situation, and where possible we would plan to also train the mother in an income generating activity, and resource her to continue this after the child’s stay.
In addition to educating the mother and child, the work of the Rehema Centre can significantly support the professional development of local Health Care Practitioners. Physiotherapists and Orthotists from Mikunduri and Miathene Hospitals have already benefited from significant capacity building due to visits from overseas professionals. This is particularly important in the area of Pediatrics. Recently visiting English physiotherapists have commented that they have seen cases in Tigania West that in the UK are now only text book cases- through educating the local professionals in early intervention techniques these degrees of severity can be avoided.
Rehema will also operate as a non-residential Outreach Centre,where from this central location activities across Tigania West and potentially beyond can be structured and resourced.
For the last five years FKK has been building a solid community framework of support for Special Needs children and their families. This support includes:
Educational Community Workshops
Disability Awareness Days
Mobile Physio Clinic
Mother to Mother Playgroups
Special Olympics Disability Football League
Disability Vocational Training Program
Family Empowerment Program
Outreach Activities in more detail
Educational Community Workshops
Rehema Centre has been running Community Workshops in Tigania West for the last five years. We have been working alongside the Special Needs teachers, parents and health professionals to improve outcomes for the children that are living with disabilities. During these workshops, parents and the wider community are educated on the issues of disability. Parents and guardians are trained on topics including First Aid, Hygiene and Nutrition. These workshops are helping in breaking the stigma in the community and with improved parent education we have witnessed improvement in the lives of their children.
Disability Awareness Days
Rehema Centre has been sponsoring the Disabled Children Awareness and Fun Day events for the last seven years. The purpose of these days is to encourage the local communities to come together to share experiences, enjoy food, and celebrate what their special needs children can do. An important part of these days is educating on the medical causes of disability, attempting to break down the misunderstanding that disability is the result of a curse or sin. We invite a wide cross section of the community to join us to further spread this learning. Numbers are growing year on year as this is a very popular event! This year’s (2018) Fun Day event was held on Saturday, 6th of May and the Chief Guest was the Dean of students at Meru University. Some of the students from the same University were also in attendance.
Mobile Physio Clinics
Our mobile Physio clinics rotate weekly through 5 different centres and are staffed by Physio’s from local hospitals. We believe that every child learns at their own pace. Therefore, we support children to learn and develop based on their individual needs and the level where that particular child is in life. For some children who are incontinent and immobile they are home bound. They cannot, and may never be able to join schools because of their complex needs, but an educational/health plan is still appropriate for them. Our mobile Physio Clinics work on this principle,developing a home program for each child. A significant part of the health professional’s role is to then train the parents to deliver this program to support the child. These clinics have operated for 4 years, and results have been very encouraging. Individual children have reached milestones that would have been unheard of without intervention However we are aware that so much more is possible for these children if more time was available at the clinics to both assess the child fully or train the parent, and hence we are working to build the Residential Centre as a direct support for these clinics.
Mother to Mother Playgroups
These playgroups currently operate from 8 local health dispensaries,they fulfill a key role in connecting us to parents of young special needs children. When the mother attends the dispensary for the child’s vaccinations the health worker often becomes aware that the child has an additional need. Typically,due to shame this child would be hidden from sight, often for years, meaning that opportunities for any medical intervention are gone. But the health worker can invite the mother to attend the monthly playgroup for children with special needs. This group can then become a peer support network for the mother, plus it also enables us to deliver cost effective medical and nutrition support to these young children when they meet together. The Mother to Mother playgroup is also a forum for FKK to deliver the educational Community workshops outlined above.
Special Olympics Football league
The Rehema Centre supports the physical education of Special Needs children in Tigania West by sponsoring football training sessions at all 14 Special Units across the sub county. Teachers and parents from all units were trained by Special Olympics Kenya to deliver football coaching to youngsters with special needs. The football sessions are an opportunity to encourage activity and a healthy lifestyle, but importantly they also foster inclusivity with the main stream children. Sport will be encouraged at the Residential Centre, with every child regardless of disability being enabled to access sport in some form.
Disability Vocational Training.
Preparing a youngster for work in adult life is an important part of education whether it is for an able-bodied or a special needs child. Traditionally it has often been thought that many of our disabled children are unable to support themselves with work. But our experience of the last few years shows that with the right level of support disabled youngsters have found opportunities to work. In 2018 17 irrigated school farms are being built at Special Units across Tigania West, these will be farmed by the Special Needs learners, and from the produce they will also be able to feed themselves.
This model is also being replicated at the Residential Centre, an arable farm and a few pigs and cows has already been established, this is currently being managed by parents of local disabled children. When the residential centre opens, part of the child’s program will be to engage in farm activities to whatever level they are able.
Special units in Tigania West have also been equipped with other resources for vocational training. With a range of tools and materials, pupils are learning skills to support their own living. We have graduates of this program who are now earning their own living by cobbling, tailoring, poultry keeping, water selling, and shop keeping.
Family Empowerment Program
This program has enabled us to have a positive impact on the long-term economic outcomes for families. To date the program is limited exclusively to achicken project where families are supported to build a hen house and are given 5 vaccinated chicks and feed. Each family also receives training on hygiene and care. To date this has had a very positive impact on families. It has been delivered to approx. 100 families, with over 200 are still hoping to be recipients.
It is our intention to start a chicken project at the Rehema Centre when it opens so that, if appropriate, after the time of the residential stay is finished families can return home with training on how to rear chicks successfully, and with the tools and chicks to make this possible.
Why are these Outreach Programs so important?
In addition to all the great results that the above projects achieve in their own right, there is a further important reason that we needed to establish them in advance of opening the Centre.
Children will not be taken into the Residential Centre unless they are referred through one of the outreach programs above.
Through having local connections to the families who benefit from residential support, we can help ensure that the intensive intervention provided at the Centre can be followed up and monitored after the child has finished their residential stay.
It also enables us to ensure that the Centre is not perceived as a ‘home’ and that awareness is encouraged from the beginning that the Centre is for short term care and respite. In a culture where children with disabilities can be abandoned this also mitigates against families abdicating responsibility for the child.
Further Activities of the Rehema Centre
In addition to being a short stay Residential Centre for children with complex needs, and operating as a hub for the outreach activities outlined above, we also see the need for the Special Needs Community to have a Day nursery for parents to leave their children during the day. This has the benefit of enabling the parent to access work, but also provides a stimulating educational environment for the child. As it has been noted that some of the disabilities in the area have been acquired due to neglect, it is our hope that in time access to a nursery might limit this.
Linked to this is the intention to offer annual summer camps for youngsters from the Special Units. This can offer a holiday program providing fun and educational play whilst the parents have some time and space to themselves.
Building the Centre -work completed to date
The land was purchased in 2015 for £8,200 in the name of a local disability focused Community Based Organisation (CBO).
During 2015-2017the land was fenced, water brought from the river 3km away, electricity connected, a farm established and a watchman and farm manager employed. work started on the first dormitory, toilet block and storage facility. Details of the expenditure and revenue on this project since its inception are below.
The Centre in its incomplete state is currently being used as a venue for one of our physio clinics, it is also acting as a venue for our physiotherapy equipment lending library. The APT workshop runs 2 days a week and manufactures assisted aids for the children in the physio clinics/playgroups. In addition the farm is supporting local disabled people, and the produce grown is being distributed to special needs units and the homebound children.
As shown on the table below the amount invested in the Centre to date by charitable funds is 6.8 million ksh.
With a further 1.3 million just having been received .
Where are we now?
In addition to the above we are delighted that a further gift of £10,000 ( I.3 million ksh) from the UK was given in October 2018 to build the kitchen. Work on this will start early 2019.
The Current Capital Budget – Rehema Centre
The costs below are based on the full vision including a staff house where we can accommodate professionals visiting the Centre to work with the children, both Kenyan and overseas. In addition, it highlights a cost for a wheel chair workshop. This workshop is to sit alongside an existing APT workshop that we built in 2016. Details of both of these activities are below in Appendix 1.
As at the end of 2018 the Capital revenue support we require to enable us to open the centre is a further 1.1 million ksh to build a Dining Hall/Therapy Room.
If you are able to support us in this work, please contact our Chair Person Caroline Newton on Caroline@mulouse.co.uk
The Rehema Respite and Outreach Centre – Manufacturing Assisted Aids on site.
Our APT Workshop
Many of the children we support require an assisted aid to function at their highest capability. This aid might be a standing frame to aid mobility, a commode to develop continence or a wheel chair. Even a small wedge to encourage changes in posture can make a real difference, however purchasing these aids a third party is extremely expensive and can take a very long time.
In February 2016, a workshop was opened on the land to manufacture assisted aids. Using Appropriate Paper Technology (APT), a method developed by Cerebral Palsy Africa, cardboard and newspaper is used to carefully construct a chair or standing frame that is a therapeutic aid for a child.
The workshop. The team prepare the cardboard.
An orthotist cuts out a chair from board, Glue and paper applied to the chair
based on a childs measurements.
Eudias comes for a chair fitting. Nancy at home with her chair
Our proposed Wheelchair workshop
The disabled community needs access to low cost durable wheelchairs. Engineers from the UK and Kenya are considering this problem, and suggesting creative solutions.To manufacture these a new wheelchair workshop is planned to be built next to the existing APT workshop.
We are exploring options of wheelchairs that can be built on site cost effectively.
Considering a wheelchair made from a wheelbarrow frame.