FREQUENTLY ASKED QUESTIONS
Which is the best school that I can take my child?
We have Educational assessment and resource centers (EARC’s) that are staffed with teachers, physiotherapists, occupational therapists, social workers and psychologists in every sub-county in Kenya. EARC officers conduct assessments (screening and identification, eligibility and diagnosis), placement, instructional planning and evaluation of children with suspected disabilities. In Kilifi, there are assessment centers at Kibarani school for the Deaf in Kilifi county, Tom Mboya in Mombasa county. If you have any questions, please see the nearest school or the ministry of education in your county for more details on the EARC center closest to you. You can also call the State Department of Education on Tel: +254-020-3318581 or the Teachers Service Commission Headquarters on Tel- +254-020-289 2000 for more details.
When will I get the results of these samples taken and maybe any diagnoses?
Results will be returned to the community on a group level and to the relevant public health, educational bodies. We will also de-identify the information before sharing the results through publications or in conferences.
Will you need us again after this visit?
Future contact will depend mostly on the use of photos that have been selected. However, if you have any questions or concerns on your child’s development, you call us on: or come by the Neuro Clinic, Kilifi, or see a health care provider in the nearest health center near you.
My child has participated in this study, what next for my child? what kind of assistance will you offer to my child?
While our study is not a treatment-based study, we do offer guidance and referral to you after the study, for example:
- We guide families through the process of getting disability cards
- We refer them for occupational therapy
- We offer treatment and medications to those who require treatment (people living with epilepsy and those with severe hyperactivity)
- Referral to specialized care for those in need.
- We recommend school enrolment to families that have not taken their children to school
- We offer psychoeducation through behavioral tips from a parent skills training guide
I have several children, why is this one different from the rest?
It can be hard to pinpoint the one main cause of developmental conditions. Some studies have found there are combination of influences that may cause a condition like your child’s. These influences can increase the risk that your child will develop these conditions. These influences could be in genes or in the environment or both. Through this study, we hope to find out more about these factors in children in Africa with these conditions.
Will my child ever be cured of this condition?
Children with developmental conditions may experience difficulties in everyday life, however, there are a few therapies available to help improve your child’s quality of life and manage any challenges. For example, occupational therapy might help your child improve everyday skills which will allow them to live more independently, speech therapy might help improve their verbal, non-verbal communication. While carrying out these therapies, it is important to have in mind that what might work for one child, might not work for another child, and to give these interventions some time. If your child has another medical condition that accompanies the developmental condition, for example epilepsy, gastro-intestinal issues, these can be treated by a doctor. Please speak with your healthcare provider for more information. Please also remember to take care of your own mental health and well-being, you can do this by seeking out support groups of caregivers of children with a similar condition or speaking with a counselor, psychologist or other mental health practitioner. This will help you take even better care of your child.
Why does my child, who is developing typically, need to give a blood sample?.
Although your child is developing typically (and in scientific studies like ours are referred to as a control), we have invited you and your child to take part in this study to help us to learn more about these conditions (NDDs). Your child does not have any NDDs but, as part of the study, we need to compare children with NDDs with other children who are developing typically. We are interested in comparing the genetic make-up of typically developing children with that of children diagnosed with these NDDs. To be able to study the genes of both groups of children, we need to take a sufficient amount of blood sample that will help us with sufficient quantities of DNA for studies and comparison. For children with NDDs, we need a blood sample from them and their parents, whereas in the case of controls we need only the child’s blood sample. As such, your involvement in the study is just as important and is appreciated.
How do I apply for a disability card?
The cards are processed and issued by the Department of Social Services at the National Council for Persons Living With Disabilities located in the County and subcounty hospitals.
- Start at Occupational Therapy in the hospital for assessment and fill out the required forms. A fee of Ksh. 500 is charged during this step.
- Take a copy of the form with a passport size photo to the nearest Social Service office
- The forms are taken to Afya House in Nairobi for further assessment then they are returned to social services.
- You will be informed of the findings and whether you qualify for a disability card through a text message. When you go to pick the card, you will also be informed of other services and benefits that you are entitled to.