The Government is conducting a nationwide mapping programme for persons with Autism Spectrum Disorders (ASD) and Related Developmental Disabilities (RDD).
A person is said to have ASD or RDD if he exhibits either Cerebral Palsy (CP), epilepsy, learning disability, Down syndrome, spina bifida or hydrocephalus.
The two-week programme that kicked off last week aims to help generate a data bank for the patients that would enable the State to set out modalities on how such persons could access drugs, diapers and critical assistive devices at no cost.
Nyeri County National Council for Persons with Disabilities (NCPD) Service Officer Ken Kabene says they have so far registered at least 400 persons across the county and hoped to hit the 1,000 mark by the close of the exercise.
Kabene says the government decided to undertake the registration process after it emerged that hundreds of ASD and RDD patients lacked access to essential drugs and critical therapeutic services.
“The Government has realized the seriousness of the high cost of sustaining these clients in our community. If you interact with them, you will realize that most of them require special support. Some of them are permanently on drugs which are expensive and are not covered on any medical cover,” he said during a visit to the Metropolitan Children Sanctuary which has been earmarked as one of the facilities that would be offering therapy services to some of those who would be enlisted as beneficiaries.
“Most of these clients require assistive devices such as walking frames, wheel chairs which are all very expensive. In Nyeri, we are registering these people, mapping them and placing them in institutions. We are working with County hospitals and also faith based organizations like the Metropolitan Children Sanctuary which is also a rehabilitation center,” he explained.
Those seeking registration can visit the NCPD offices in the county or go to the Huduma Center for them to get mapped.
By yesterday, Metropolitan Children Sanctuary had enlisted at least 100 persons with the number expected to rise before the close of the 14-day exercise.
Ms Ruth Macharia, a Senior Nursing officer at the faith based facility has lauded the decision to register ASD and RDD patients terming it a timely gesture.
She says the majority of parents who bring their children to the facility for therapy lacked even the basic necessities of life like food and clothing owing to biting poverty levels at home.
The families are also shunned by members of the community and even close relatives who view such children as a misfortune.
“In the last two weeks, we have been mapping all children with Cerebral Palsy, autism, hydrocephalus, epilepsy and Down syndrome. We have been grateful to the National Council for Persons with Disabilities since they have given us officers to register our clients. We request the government to support all these children with anticonvulsant drugs so that they are able to lead a quality life. All these children also use diapers which are very expensive and these mothers are not able to buy them,” she said.
Petronella Wanja, a single mother, opened up about the horrors of having to bring up her 11-year-old son alone after her husband walked out on her when their baby was diagnosed with CP.
The 31-year-old jobless university graduate holds a Degree in Agribusiness Management and says life has been one painful trek with her son whose life is wholly dependent on six different types of drugs.
Wanja said she needed money to pay for a new feeding tube for the boy after the one currently in use malfunctioned in December last year.
“My son was diagnosed with CP at birth and soon began therapy at the age of three months. Since then, he has been surviving on drugs and feeding through a tube. I am overwhelmed with footing all the bills and taking care of him singlehandedly. I sincerely thank Metropolitan Children Sanctuary for coming to my aid and assisting me with food, treatment, standing frames for my child and even offering transport for us from home to this place, she told KNA.
Her woes are not different from those of Beatrice Wanjiku who has been taking care of her 14 –year girl daughter who is battling CP.
She says her daughter was discovered with a deliberating health condition immediately after she was born.
Since then, the girl has been taking baby steps thanks to specialized therapy sessions at the facility. Today, she can now turn and even smile at people.
“I am grateful for the help I have received from this facility in terms of therapy sessions, standing frames, wheel chairs and sitting aids. As a family, we are still stretched since our daughter still requires drugs that go for Sh7,000 every month to control bouts of convulsion. At 14 years of age she also needs adult diapers which again come at a dear cost. All this has drained us to the last ounce of strength leaving us with almost nothing to take care of our other two children,” she laments.
During celebrations to mark last year’s International Day of Persons with Disabilities celebrations in Nyeri, parents of children with Cerebral Palsy in Nyeri County had appealed to the national government to set up a sustainable income generating initiative to help them take care of the children.
They lamented that dependence on handouts was not sustainable given that the donations were creating a dependency cycle for the mothers who doubled up as caregivers.
“We need to empower mothers through income generating projects because the donations last them a couple of months forcing them to depend on aid from well-wishers,” said Esther Wambui, a member of the Cerebral Palsy Family Warriors, a support group formed by parents of children with CP.
They also sought support to establish a CP center in the county, lamenting that whereas the county boasts of a number of special schools, none of them had the capacity to care for those with the condition.
“Children with Cerebral Palsy require 24 hours attention and in Nyeri we do not have a center that provides such care for these children. We also do not have dedicated caregivers that is why parents like us opt to care for our children, “she pointed out.
CP refers to a series of disorders leading to abnormal brain development compromising a person’s ability to use the muscles.
Doctors attribute the condition to an infection such as meningitis or head injury.
According to the Centers for Disease Control and Prevention (CDC) the condition affects 1 to 4 children in every 1,000 children globally.
In Kenya, there are no official statistics on the prevalence of the condition. However, experts estimate that one in every 100 children live with the health challenge.
By Samuel Maina
