My Colour is Blue

Our Journey with our Autistic Son

Medical and Other Information

Medical Aid

Autism does not fall under the mental health benefits of the medical aids and medication does not fall under Chronic.

Pathology (Blood Tests) – Unlimited in hospital but subjected to your day-to-day benefits under general on Medical Aids

Stool Samples/ Urine -Organic Acids Test – Not covered, providing the procedure can be linked under the correct codes, your medical aid will not pay for this even if you do have benefits. The samples need to be fresh, most often frozen or on ice.

  • For an organic acid test, you are looking at R2140 with Ampath and R2300 with Pathcare. Or about R2300-R2500 through a medical company.

Audiology, Dietetics, Genetic Counselling, Occupational Therapy and Speech Therapy – is subjected to Day-to-day benefits.

Specialized Radiology – CT scans and MRI, could be subjected to an annual overall limit per family.

If your child is also diagnosed with another condition and it is a chronic condition (like Epilepsy, Schizophrenia and Bio-polar), that will be covered under the PMB programmes. Some medical aids do cover ADD (Attention Deficit Disorder) up to 16 years of age, but that will only be certain medications. Medical aids don’t cover ADHD. However, you need to find out by your medical aid if any of the treatments or programmes or medication will be covered under the Mental Health option as most medical aids now have a Mental Health benefit.

Autism is a Spectrum ‘disorder’ and can have many other comorbidities, depending on the symptoms you see there are many other tests that can be done:

Common health issues

These health issues are commonly noted amongst Autistics, but are not exclusive to Autistics:

Gut Issues

  • Inflammatory bowel disease
  • Reflux
  • Improper food absorption
  • Dysbiosis of the gut (due to bacteria and yeast issues)
  • Nutritional problems (including improper protein absorption) (See MTHFR series)
  • Food opioids (this is the need for a gluten/casein-free GFCF diet!)
  • Gastritis
  • Leaky gut

Brain & Blood Disorders

Musculoskeletal conditions

  • Abnormal gross motor function
  • Dysmorphic physical features
  • Bone pain with rash
  • Growth failure due to vitamin C deficiency (scurvy)
  • Fractures
  • Ehlers-Danlos syndromes (EDS)/hypermobility spectrum disorders (HSD)

As with any health condition, there is two treatment option (doing nothing or letting nature takes its course is not an option): Treatment with pharmaceuticals or Treatment through integrated medicine (natural products and eating plans).

Treatment with pharmaceuticals means using central nervous system stimulants like Ritalin, Concerta, Contramyl, Methylpendiate Douglas or Risperdal to manage hyperactivity and focus. However, because of the side effects, more medication is prescribed for sleep issues, mood and behaviour issues and appetite issues.

Treatment through integrated medicine means looking at deficiencies in the body, looking at toxins in the body and looking at the functions in the body. As previously mentioned, various physiological conditions are influenced by genetic disorders, metabolic dysfunction, nutritional deficiency, immune dysfunction, gastrointestinal disorders, and sleep disorders. These conditions can be picked up in the blood, urine/stool and DNA.

However, there is actually a third option – a combination of both. You start with the integrated medicine – the urine (OAT) and stool test will tell you about what is going on in the gut, the blood test looks for allergens and other immune dysfunction and the DNA (MTHFR) helps to create targeted treatments of both natural and pharmaceutical.

Organic Acid Test (OAT) series: OAT part 1: Introduction, OAT part 2: Intestinal Microbiomes, OAT part 3: Oxalate Metabolites, OAT part4: Glycolytic Cycle and Kerbs Cycle Metabolites, OAT part 5: Ketones and Fatty Acids, OAT part 6: Pyrimidine Metabolites, OAT part 7: Amino Acid Metabolites

Finances

By now you have come to realised that treatments and therapies are not cheap.

South African Social Security Agency (SASSA)– You will have to go and see an official at your local SASSA office to complete the forms to register your child for a Care Dependency Grant. The current amount is R1900.00.

For your child to qualify for a grant:

  • your child must either see a doctor at Tygerberg or Red Cross hospital. Because SASSA is government-supported, the diagnoses must come from a doctor at a state-owned facility.
  • the applicant must be a South African citizen, permanent resident or refugee;
  • the applicant and child must be resident in South Africa;
  • the child must be under the age of 18 years;
  • must submit a medical / assessment report confirming permanent, severe  disability;
  • the applicant and spouse must meet the requirements of the means test (except  for foster parents);
  • the care-dependent child/children must not be permanently cared for in a State Institution.

Application for SASSA or renewal of SASSA can also be done when your child attends a government subsidised special needs school.

South African Revenue Services (SARS) – You will have to go see an official at your local SARS office to complete the forms to enable you to claim back for certain expenses related to transport, medical and treatment for your child’s Autism. Some people have expressed their disappointment regarding claiming back from SARS as the hoops (the GAF-score) you have to jump through is too many. But you can:

GAF-score: The score is use to determine the severity of the disability. The method was developed after the Vietman War to test ex-servicemen mental health. The GAF-Score was done away with last year and most agencies uses the DMS-5. Your child’s score must be at least below 60.

SARS – South African Revenue Service

Not everyone qualify for a SASSA grant.

For those that do not go via State, but still cannot afford medical aid, can apply for disability tax relief from SARS. This include travel expenses to and from therapies, therapies, school fees, equipment, medicines including nappies – basically everything related to the support for the disabled dependant.

You can try submitting your application to SARS yourself or you can get help through an tax consultant.

We have used Bendels Consulting for 3 years.

Other Government Programmes

Western Cape Government – Persons with Disabilities Programme

What do they do: “The Department of Social Development (DSD) provides services to people with disabilities, their families and/ or caregivers, and the communities in which they live.”

What services they have:

  • Residential care services facilities
  • Protective workshop services
  • Daycare centres (for both children and adults)

Including Social Work Services

The Department’s vision is “creation of a free and just society inclusive of all persons with disabilities as equal citizens”.

Through this vision the Department focus on:

1. ECD (Early Childhood Development) & Disability

2. VEP (Victim Empowerment Programme) & Disability

Click on the link to follow the page, further links to the various services are available on the page

FUNDING – For the average household with two working parents it seems impossible to get the money together to pay for everything. For single-parent families it is even worse as the grant from SASSA is not much and you don’t always get refunded for everything you listed for SARS.

So what to do?

Many parents have started Trusts or even NPOs (No-Profit Organisations) to help with day-to-day expenses. They have regular fundraisers or high teas for family and friends. If you are lucky, you can get someone to sponsor the printing of t-shirts, caps and water bottles.

For those interested in starting an NPO, here is some more info:

  1. Model Constitution
  2.  Application for NPC Company registration
  3. Application for NPO
  4. Frequently asked questions

Workplaces:

You can follow the link to DWDE, The Living Link.

Terms:

  1.  PMB Prescribed Minimum Benefits is a set of defined benefits to ensure that all medical scheme members have access to certain minimum health services, regardless of the benefit option they have selected. The aim is to provide people with continuous care to improve their health and well-being and to make healthcare more affordable.
  2. Lead poisoning causes cognitive deficits, learning disabilities, behavioural delays, neurological immaturity, and attention deficits.