NAKURU, Kenya, Feb 6 (Thomson Reuters Foundation) - Everline Achieng has a disability you only notice when she stands. She walks with the support of a crutch since losing the use of her right leg at the age of eight due to an unknown illness that also put an end to her education.
In 2010, three years before the government introduced a free maternity services programme, she delivered twins by caesarean section at the Rift Valley General Hospital, but they died after developing breathing problems.
On top of suffering the loss of her babies, Achieng had difficulties in hospital as the bed she was given was high and fixed. “It was a painful struggle climbing onto it,” she recalled.
At the hospital where she delivered, since renamed as Nakuru Level 5 Hospital, the wards are now equipped with adjustable beds - a sign that health services are becoming more inclusive.
But one thing has not changed: the lack of data on disabled expectant mothers.
In 2013, health functions were devolved to Kenya’s 47 counties, which are bound by the 2010 constitution to implement health policies developed at the national level, including free maternity services.
But rights activists say those services have not been adapted for disabled women, partly because the government is not gathering information on them.
Achieng is counted as one of the nearly 5 percent of the Kenyan population suffering some form of disability, as captured in a 2007 national survey.
But that data is now around a decade old - and more recent censuses, such as the 2014 Kenya Demographic and Health Survey, do not include information on disabled men, women or children.
In hospitals, the patient sheet filled in by pregnant women has no question asking if they have a disability.
Information gathered by county hospitals is fed into the Ministry of Health’s database, which can be used by other ministries and development agencies. But the oversight in the data collection makes it impossible to tell how many disabled mothers are delivering at hospitals.
Dr. John Murima, medical superintendent at Nakuru Level 5 Hospital, could not provide figures on disabled women giving birth at the public facility.
“We use certain tools to capture data for patients - for example, their general health. But we do not have a tool that captures people with disability as a patient,” he said.
Given that governments and donors rely on data to identify development concerns, Kenya’s lack of statistics on disabled people accessing health services means their needs are at risk of being ignored, experts warn.
President Uhuru Kenyatta introduced the Free Maternity Services Programme in mid-2013, aimed at relieving all women of having to pay user fees for delivery at public hospitals.
Annually, 1.6 million women in Kenya deliver babies, according to the health ministry. Of these, around 1 million give birth in public hospitals, while 200,000 do so in private hospitals and 400,000 deliver at home or in unhealthy conditions.
Even women who do not pay into the National Hospital Insurance Fund (NHIF), a state health insurance scheme, are eligible for free delivery.
Last October, the health ministry extended free maternity services under a programme called “Linda Mama, Boresha Jamii” (“take care of a mother, improve the family”).
Under this initiative, expectant mothers who cannot afford insurance cover can now access ante-natal, delivery, post-natal and health services for their child for a year.
Dr. Peter Kimuu, head of the health ministry’s policy, planning and healthcare financing department, said those eligible must register first for a free NHIF card.
“Every woman has a right to access equal and quality health services in any hospital,” he said.
But for Achieng, the unique needs of disabled mothers extend beyond free maternity services.
“We really need help to start income-generating activities to be able to afford a healthy lifestyle,” she said.
The global Sustainable Development Goals (SDGs), launched last year, state that countries should promote gender equality by eliminating all forms of discrimination against women.
But without data to demonstrate the scale and urgency of the problem, securing funding for programmes to support disabled women is likely to take longer than the 15-year life span of the SDGs, argued George Gongera, a professor of strategic management and international relations at the Co-operative University College of Kenya.
Dr. David Ole Sankok, chairperson of Kenya’s National Council of Persons with Disabilities, which is charged with collecting data on disabled people, said no audit had been done on women with disabilities seeking maternity care.
But trying to gather such information could draw strong reactions from the target group, he warned.
“This is a private affair and you can’t start asking if she has a disability. She will begin to think that she is not supposed to be pregnant because of her disability,” said Sankok.
Despite the sensitivity of the issue, medical staff are being trained to handle disabled patients better, and the council is pushing for prescriptions to be offered in braille for the blind, he added.
Stephen Obama, Nakuru County coordinator for persons with disabilities and development, said programmes targeting disabled women must be implemented urgently if they are to enjoy good maternal health.
“Poverty is a major problem facing persons with disabilities - and for a pregnant woman it becomes even more complicated because they have special needs to meet, like healthy food - and that means money which they don’t have. We want government to note this as a troubling issue,” he said.
Last year, the Ministry of Health recognised the poor state of data collection in a key investment framework, noting that it is problematic for planning and monitoring.
Faith Njahira, a disability rights advocate, said the government should utilise information collected by community health workers from households - which includes disabilities among family members - to compile disaggregated data.
That would be a key step towards recognising the problem, said Gongera. "It is very difficult to consider an issue, even when it is an emergency... when you have no data to show," he said. (Reporting by Moraa Obiria; editing by Megan Rowling. Please credit the Thomson Reuters Foundation, the charitable arm of Thomson Reuters, that covers humanitarian news, climate change, resilience, women's rights, trafficking and property rights. Visit news.trust.org/)