FREQUENTLY ASKED QUESTIONS

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.

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.

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.

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

-In Kilifi:

We refer families for occupational therapy and specialized care and offer treatment and medications to those who require it. We also recommend school enrolment to families that have not taken their children to school.

-In Nairobi:

We speak to the child's primary doctor on any healthcare issues that might arise during the assessment, and for which the child is not receiving care, and we will connect families to support organizations for children with Neuro Developmental Disorders.

According to the Persons with Disability Act of 2003, a disability is, "A physical, sensory, mental or other impairment, including any visual, hearing, learning or physical incapability, which impacts adversely on social, economic or environmental participation".

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.

-In Kilifi:

• Start at Occupational Therapy in the hospital for assessment and fill out the required forms. A fee of Kenyan Shillings. 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 and 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 up the card, you will also be notified of other services and benefits that you are entitled to.

In Nairobi:

• Visit a government hospital gazetted for disability assessment. Assessments are not every day, so call or visit in advance to book your child's appointment. This is free at most hospitals. Bring a passport-size photo of the child.

• Take your application to the National Council of Persons with Disabilities (NCPWD) in Nairobi county. It will be sent to the Ministry of Health and the National Council of Persons with Disability. Expect to wait a few weeks.

• Return to pick up your child's disability card. You will pick it up at the NCPWD regional office where you dropped it off. If you want to be considered to receive financial support, call your office (Beneficiary Welfare Committees at the local level (where these committees exist), the Chiefs or Assistant Chiefs, the County Social Development Officer, the Sub County Social Development Officer, the nearest County Children Officer, or the Sub County Children Officer) to find out when recruitment will be done.

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.

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.

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 EARCs at Kibarani school for the Deaf in Kilifi county andTom Mboya in Mombasa county.

-In Nairobi County, the Educational assessment can be done at St Paul's EARC Makadara, Kabete Vet Primary School in Westlands,National Psycho-education Assessment and Research Centre-KISE,Kasarani and SCDE Office Kawangware, Dagoretti.

Additionally, there are educational psychologists for the AKU clientele who attend integrated private schools to help with learning accommodations and individualized education plans after psychoeducational assessments are done.

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.