'What's the guarantee?' - Mother worries about autistic daughter's future after she's gone

For Mary Amoah Kuffour, one of the most frightening questions about raising a child with autism is not what happens today, but what happens after the parents are gone.

The mother of 23-year-old Nana Yaa says she is deeply concerned about who will care for her daughter when she and her husband can no longer do so.

Speaking on The Delay Show, Mary Amoah Kuffour said parents can make extensive financial and material preparations for children with disabilities, but there is no certainty that those arrangements will guarantee proper care.

“My husband and I can work and save fortunes for her for someone to take care of her when we’re no more but what’s the guarantee?” she asked.

She said she has seen parents make elaborate plans for their children, including building houses for them, only for the children to later find themselves without the quality of care their parents intended.

That uncertainty, she said, is one of the greatest fears confronting parents of children with disabilities.

Mary Amoah Kuffour's concern is particularly personal because Nana Yaa requires support with several aspects of daily life and has a caregiver.

She said the prospect of her daughter being left vulnerable after her death weighs heavily on her.

The death of a close friend whose child also lived with autism reinforced those fears.

Mary Amoah Kuffour said her friend died last year and her child is now being cared for by the father with the assistance of a caregiver.

She believes families need long-term systems of support that go beyond individual parents.

That belief has influenced one of her major ambitions for Klicks Africa Foundation.

Kuffour said the foundation has five large plots of land which it hopes to develop into a care home based on the assisted-living model used in other countries.

The facility, she said, would provide a more structured long-term environment for people with disabilities.

For her, the project is about creating a future in which parents do not have to constantly wonder what will happen to their children when they are no longer alive.

She also believes society needs to change how it views disability.

“We need acceptance. It makes us feel welcome,” she said.

Kuffour said stigma makes an already difficult situation harder for families and called for greater understanding from communities, including churches.

She said the need for such support is becoming increasingly urgent as more children are diagnosed with autism.

Her concern ultimately goes beyond Nana Yaa.

It is about whether society has adequate structures to protect and support people with disabilities throughout adulthood, particularly when their parents are no longer there to advocate for them.