SUNDAY 6 OCTOBER 2019
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How a Survey Reduced Stigma for Children with Cerebral Palsy

When one mother of a child with cerebral palsy decided to tackle negative perceptions surrounding the condition, the people of Kenya found resistance was futile.

This project was a World Cerebral Palsy Day Merit Award winner in 2017. Enter your project or campaign in the 2018 Awards!

 

Nothing compares to a mother’s love. Mary Warigia is the mother of a gorgeous little girl who also happens to be living with cerebral palsy. When her daughter Joy was born, a lack of information on what she was facing and how to get help was beyond frustrating for the seriously determined young mother.

The day it was suggested that Joy was bewitched – and that a Witch Doctor was required – was the day Mary decided to start the Orion Foundation, a non-government organisation that creates awareness about cerebral palsy and by extension, other special needs.

It was January 2013.

Since then, Mary and the Orion Foundation have made epic strides in increasing awareness about cerebral palsy across the country.

Her most recent effort began with a survey on cerebral palsy perceptions in Nairobi, Kenya’s largest city.

So, how did the survey reduce the stigma?

The survey was only the starting point. It led to a launch of the findings to key stakeholders, a raft of media attention, a series of public awareness events, and a 2-day training sessions for parents of children with cerebral palsy.

But in the very beginning, it was the survey that the Orion Foundation, together with Breakthrough Consulting, developed so they could understand:

  • the various issues surrounding children with cerebral palsy and their caregivers
  • what kind of burden caring for a child with cerebral palsy gives the family or caregiver
  • how accessible Nairobi, as a city, is to anyone with cerebral palsy
  • whether the education sector within Kenya is inclusive of children with learning disabilities, such as children with cerebral palsy
  • how ready the healthcare system is to cater for children with cerebral palsy.

What were the key findings from the survey?

  • Mothers bear the biggest burden in care of children with cerebral palsy. This burden ranges from financial to psychological matters.
  • There is no insurance for care of people with developmental disabilities and as a result, there are increased cases of children who are unable to access quality healthcare
  • The general public is more aware of physical disabilities than they are developmental disabilities
  • The government needs to do more to support children with disabilities.

How were those findings used to develop public awareness sessions?

“With the findings, we were able to engage the media and address the gaps we found in the study,” says Mary.

“We did this through TV, public engagements with the churches, and published articles to articulate the condition for the public.”

“We have also engaged the Kenya National Human Rights Commission – which is a government agency – to address the insurance issue from a human rights exclusion perspective,” she tells us.

“This is an ongoing engagement and we hope to come up with a concept paper that can ultimately guide policy issues around insurance.”

What training was delivered to parents, and how was that connected to the survey findings?

From the findings, Mary and her team developed a parental efficacy training program for parents where they worked with:

  • neurologists
  • psychologists
  • speech therapists
  • occupational therapists
  • special needs teachers, and
  • sport teachers.

“We also worked with government agencies like the National Hospital Insurance Fund, the Association of the Physically Disabled of Kenya, and others,” says Mary.

“We put together the multi-disciplinary team to help the parents learn how to cope with the stress associated with managing the children, and also how to take care of their children when they’re with them.”

“We found that most of these forums, although open to all parents, were 90 per cent attended by mothers. This also confirmed our findings that most men left their families once a child with special needs was born,” she says.

The results

  • 115 parents were trained
  • Parents were empowered and have raised their standards for bringing up their children
  • Parenting centres have given feedback that they have taken up the initiative to share the word with other parents like them
  • Churches are accommodating and willing to be trained in understanding disabilities and how to be more inclusive
  • Two churches have started a ministry of persons with special needs
  • More children with disabilities are attending school
  • The government is now consulting the Orion Foundation with regards to policies and guidelines for people with cerebral palsy.

What’s next?

“We are planning to double the number of parents trained this year, and raise awareness in two more churches by the end of the year,” says Mary. “And we’re also going to train more teachers, student therapists and counselors to understand cerebral palsy and its management.”

Mary says that the Orion Foundation would also like to partner with more organisations to continue scaling the project upwards.

Anyone interested in working with the Orion Foundation to help them achieve their goals can contact them via email at admin@orionfoundation.or.ke