OPINION: Uhuru’s suspension of new NHIF rules a welcome relief for special needs children. But for how long?

In the last week or so, I have been having discussions here on the financial costs special needs parents face.

As I had explained in an earlier thread; mental, intellectual and neurological disabilities will vary.

Some are detected right from birth while others will show as the child ages; therefore, the severity will range as will the medical needs.

So now the doctors and specialists our children need to see often are: Paediatricians, Paediatric Neurologist, Paediatric Ophthalmologist, Occupational Therapist, Speech Therapist, Chiropractor, Child Psychologist (the list will vary according to the disability).

Now can we calculate those costs? Peaditrican/Neurologist Ksh. 1500-6000 per visit; Occupational/Physio/Speech therapy Ksh. 800-3500 per session, minimum three sessions per week; Child psychologist – Ksh. 2000-6000 per session about twice a week.

Each doctor will require tests done. The routine tests our kids usually go through are: MRIs- a minimum of once a year Ksh.11,000-23,000; EEG- Ksh.7000-10,000 about twice a year; Blood work-(which is very broad depending on what the Doc is checking but put approximately Ksh. 8,000-20,0000 for that). Yes, Ksh. 20,000.

So as we ponder on this, most of our beautiful children are on daily medication. The most common being an Anti seizure or an Anti convulsant.

The medication can range between 8k-15k per month depending on the brand. THE MEDS MUST BE TAKEN DAILY WITH OUT FAIL.

Now you can understand why parents/guardians of special needs kids gave up hope when they saw the new NHIF regulations last week. Weeeh!

Most insurance companies don’t cover these medications. And if they do the affordable premiums will run out by month 2.

While we saw the implementation of the NHIF rules being halted this week by the President, we are anxious; we don’t know if it’s just temporary or will they even lock more people living with various intellectual disabilities out?

This is why we are pushing for the bill for Tax rebates for special needs parents and guardians.

This is why at times these kids are left at home because a majority of parents cannot meet these costs.

This is why most parents are dealing with depression.

As Christina Mutena, Jane Muiruri, Andy Speaks (organization for special needs persons), Catherine Wanjiku and Njeri Maria are trying raise awareness on Special needs we need our leaders to speak up.

We need proper legislature. Systems must be put in place. We will continue to fight for our children’s rights. The time is now!

This article is a compilation of a Twitter thread originally published by Micere Nyaga, a special needs activist

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