*Karen had just resumed work from maternity leave when her daughter was diagnosed with autism. It was a huge setback.
"I remember how thrilling it was when she was born. My first child. I was ecstatic!" she recalls.
But she soon realised her daughter would not be any ordinary child.
"At four months, I realised my child couldn't grip toys, follow moving objects with her eyes, or react to loud noises or gestures while engaging with her. That's when I was concerned and took her to the hospital, where she was diagnosed with autism spectrum disorder (ASD) after a series of examinations. It broke my heart. I had countless questions. Why my daughter? Why me? Why my family?" She narrated.
She would come into terms with the high emotional, financial, and family costs of raising a special needs child.
Parenting special-needs children frequently necessitates parents to deal with an onslaught of practical demands, such as altering the home environment and schedule, fewer career alternatives, persistent time constraints, financial expenses for various specialists and therapists, and so on.
Most of them are difficult to meet, and they frequently have an impact on every aspect of family life and one's own life.
Between September 2016 and June 2017, the Kenya Institute of Special Education conducted a national survey on children with disabilities and special needs in conjunction with the Ministry of Education.
The purpose of this survey was to gather reliable data in order to improve service delivery for special needs children.
According to the study findings, Kenya has a prevalence rate of 11.4% of children aged 3 to 21 with special needs and disabilities. The distribution of disabilities among male and female children was rather equitable, with 51.2% of boys and 48.8% of girls having special needs.
It was found that 72.6% of children with disabilities and special needs live in rural areas, compared to 27.4% in urban areas.
According to the United States Department of Agriculture, the cost of childcare from birth up to the age of 18 is around Ksh27 million (this figure is for illustration purposes only as it applies to the cost of living in the United States).
These costs can triple for a child with special needs. Autism can be especially financially destabilising for families that spend significant amounts of money on therapy and care.
Autism Speaks, an autism advocacy charity, estimates that the lifetime cost of caring for a person with autism can reach Ksh90 million.
Even with medical insurance, parents with autistic children may face mounds of unpaid bills, according to Michael Rosanoff, Associate Director of Public Health at Autism Speaks.
"Autism has a huge financial cost. It can cost an average family $60,000 (estimately Ksh6.9 million) every year, and the costs are ever rising," he says.
Finn Howe, the son of tech writer Jeffrey Howe, was diagnosed with CVI (cortical vision impairment), ASD (autism spectrum disorder), and DCD (developmental cognitive disability).
While speaking with CNN Money, Jeffrey Howe observed that while each special needs child's actions and needs are unique, almost all come at a great cost. The Howes' annual costs include budgeting for a caregiver, diapers, occupational therapy, and out-of-pocket care. Other costs are more difficult to estimate.
While there is no clear explanation from the medical profession, autistic children are more likely to have other medical issues.
Many people with special children take out loans, sell their valuables, and even deplete their savings to obtain the funds they require.
While most families with a special needs child may face financial issues, experts suggest that a little foresight can go a long way toward relieving the financial strain.
Remember, the cost of raising a child with a disability varies substantially depending on the condition and the degree of the condition. So the costs may not be the same but the planning would, nevertheless, be beneficial to everyone.
Raising a special needs child is an ongoing expense that escalates with the child's age. Families should have a good grasp of projected future costs or their finances could suffer in the future.
If your child suffers from a chronic condition, you should start planning for their financial needs as soon as it is feasible. The type of disability, as well as the child's life expectancy, future earning capability, and housing needs, will all play a role in the plan.
The first step should be to create a monthly budget that covers therapy, education, and recreational expenses. The next stage is to estimate the expense of the child's care as he/she grows bigger and start saving for appropriate devices. In order to build an inflation-beating nest egg, you must account for inflation.
Parents need to purchase a life insurance policy that is at least 10 times their yearly income after accounting for their child's subsequent liabilities. Investing in an insurance plan for your child is a great way to ensure cash flow when the child grows older and when you retire.You could also look into specialised health insurance packages for your special needs child.
Your child's condition should not keep them from functioning in life. You can assign your child a chore that he or she is capable of handling and be keen on their strength then capitalise on helping them grow in that area.
Invest in your child's education to help them become self-sufficient. Provide your child with a basic understanding of how they can grow into an impactful person and it will pay off. Just be very patient with them.
Having a special needs child impacts everything, even financial planning. While other children are expected to become self-sufficient as they grow older, a special needs child may require care for the rest of their life.
It's also important to think about how you'll support your child when you or your spouse are not around. One option is to establish a special needs trust. Special needs trusts guarantee that funds are available for the special needs child's everyday needs. This type of trust might save you hundreds of thousands of shillings.
If you don't have enough money to put into a trust, as many parents of special needs children experience, you can tie the trust to your life insurance policy.
Parenting a child with special needs is demanding, so parents should prepare for the unexpected. This entails saving money whenever possible, utilising all available resources, and creating preparations for both the short term and long term.
There's no denying that caring for a special-needs child is time-consuming, expensive, and exhausting. While you may be unable to change the diagnosis, you can develop a financial plan to assist you and your child in planning for their current and future life.
“Raising my daughter has taught me a lot about compassion, resilience, and the wonders of God. So, even if life and my financial plan have taken a dark turn, I still choose to love and be there for my child till the very end.” - Karen.