The Struggle for PMB Coverage in SA

The Struggle for PMB Coverage: What Parents of Neurodivergent Kids Are Going Through

This article is based on open discussions shared by parents in The Neuroverse WhatsApp group, which has been active since March 2024. The insights reflect the lived experiences and perspectives of families navigating medical aid coverage for their neurodivergent children in South Africa.

What Are PMBs?

Prescribed Minimum Benefits are a set of chronic conditions and healthcare services that all medical schemes in South Africa are required by law to cover. PMBs are defined by law through the Medical Schemes Act of 1998 and are meant to guarantee access to essential care. However, the list of conditions covered under the Chronic Disease List (CDL) does not currently include ADHD, autism, sensory processing challenges, or anxiety disorders. 

Some Conditions Aren’t Always Covered

A common concern raised by parents is that certain conditions—like ADHD, Autism Spectrum Disorder (ASD), Sensory Processing Disorder (SPD), and anxiety—are not consistently recognised across all plans or schemes. Some families have shared stories of their medical aid covering one condition but not another or offering limited benefits depending on the plan type.

In some cases, parents reported being told that therapies such as occupational therapy (OT) or speech therapy weren’t eligible for cover under PMBs, even when they believed their child’s diagnosis would qualify.

“I pay thousands every month for medical aid, but when I need real help for my child, I’m told it’s not covered. It feels like a betrayal.” – Parent testimony

The Financial Pressure Adds Up

Without consistent coverage for therapies, many families say they’re left to manage significant out-of-pocket costs. Some reported spending tens of thousands of rands per year just on a single type of therapy, like OT.

Even when partial cover is provided, parents have spoken about gaps that remain—leaving them with difficult decisions about how to allocate limited resources while still trying to prioritise their child’s needs.

“We drained our savings because medical aid refused to pay for OT. What’s the point of having medical aid if they don’t help when you need them?” – Parent testimony

The Process Can Feel Overwhelming

Several parents described the process of applying for PMB coverage as time-consuming and emotionally draining. They spoke of having to submit multiple reports, assessments, and letters from healthcare professionals—sometimes more than once—before receiving a decision.

Some shared that their applications were denied due to how the condition was classified, or that they were asked to provide documentation they had already submitted.

“They kept telling me I needed another report, another doctor’s letter, another motivation… until I finally gave up. It’s a never-ending cycle.” – Parent testimony

Finding Workarounds

In some cases, parents said they had explored alternative ways of presenting their child’s needs to improve the chances of approval. This might include listing a different diagnosis that is more likely to be recognised or coding therapy services under broader categories.

While these strategies sometimes help families access care, many parents said they’d prefer not to rely on workarounds—and that they wish the process were simpler and more transparent.

The Emotional Toll Is Real

Alongside the financial and administrative challenges, parents spoke candidly about the emotional impact of trying to secure support for their children. Some described feelings of helplessness or burnout, particularly after repeated rejections or delays. Others shared the weight of having to advocate constantly—while also managing the everyday realities of parenting a child with additional needs.

“I shouldn’t have to fight so hard just to get basic medical care for my child.” – Parent testimony

What Parents Are Doing

Despite the challenges, many families are finding ways to keep pushing forward. Some have taken steps such as:

• Appealing denied claims and asking for detailed feedback from their medical aid.
• Requesting letters of motivation from healthcare specialists.
• Reaching out to the Council for Medical Schemes (CMS) to raise concerns or lodge formal complaints.
• Joining advocacy groups or campaigns that aim to raise awareness around access to care for neurodivergent children.
• Exploring additional support options, including disability tax rebates or grants from nonprofit organisations.
• Some parents have even started their own petitions. Click here to sign the petition to get ASD recognised for PMB

Need Help Navigating a Denied PMB Claim?

Here are practical steps South African parents can take:

1.Request a Detailed Explanation

If your claim is rejected, ask your medical scheme for a written explanation, including the reason it does not fall under PMBs. Request the specific clause or ruling being applied.

2.Submit an Appeal

Many medical aids have an internal appeal process. Include a motivation letter from your child’s treating specialist and any supporting documentation.

3.Escalate to the Council for Medical Schemes (CMS)

If your scheme rejects a PMB claim, you are entitled to a written explanation under Regulation 8 of the Medical Schemes Act. You can escalate disputes to the Council for Medical Schemes (CMS), who oversee compliance with PMB rules.

Website: www.medicalschemes.co.za
Email: complaints@medicalschemes.co.za
Phone: 0861 123 267

4.Explore Tax Relief for Disability-Related Expenses

If your child has a confirmed disability diagnosis, you may qualify for tax deductions on out-of-pocket medical expenses.
Visit www.sars.gov.za and search for “Disability Tax Rebates.”

5.Look for Financial Support or Grants

Some local NGOs, community groups and therapy centres offer funding assistance or sliding scale fees. Examples include:
– Children’s Disability Centre – www.childrensdisabilitycentre.org.za
– BackaBuddy – for crowdfunding assistance

A Final Word

The experiences shared by parents highlight how complex and emotionally taxing it can be to access the support their children need. Each family’s story is different, but the dedication and resilience shown in advocating for their children is a powerful reminder of what’s at stake.

“I will keep fighting for my child. But this shouldn’t be so hard.” – Parent testimony

Disclaimer: This article reflects the lived experiences of parents in South Africa and does not constitute legal, medical, or financial advice. For official guidance on PMBs, visit www.medicalschemes.co.za.