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COVID-19: Caring for children with special needs, a challenge now more chronic
One in 10 children is a child with disability and according to UNICEF, COVID-19 will likely “disproportionally affect those children with pre-existing vulnerabilities.” Adie Vanessa OFFIONG looks at what it has been like for families and caregivers of such children, since the beginning of pandemic and the lockdown that followed.
Adie Vanessa Offiong
RAFAT Salami (50) went into a panic when she noticed countries locking down and industries shutting down in Europe due to the COVID-19 pandemic. Her immediate concern was how she would get enough supplies of medication and dietary requirements for her 15-year-old son, Ahmed.
Ahmed has attention deficit hyperactivity disorder (ADHD), mild cerebral palsy and also intellectual disability. This is all resulting from poorly managed neonatal jaundice.
Rafat, a journalist, said, “because we want to maximise everything to help his brain develop, he is on a special diet. He does physiotherapy to help with the cerebral palsy so that he can have better use of his muscle tone, his spine and gross motor skills.
“He attends a special needs educational centre because inclusive schools are virtually non-existent and do not cater to his type of needs. The daily challenge is navigating among all three to make him a better person.”
In caring for him, the mother of three sons, said everything is challenging on a good day; from school runs to Ahmed’s learning, meals, physiotherapy and buying his medications.
Her voice is elevated in excitement as she counts her blessings that most of his developmental milestones have been achieved, like his speech, which is now perfect and he no longer has need for that therapy.
Almost immediately, as if remembering her current reality, her voice dropped, as she said, “but we still have a very long away to go and there is no support, whatsoever. It is all on us.”
Before the pandemic, Ahmed’s medicines alone cost no less than N55, 000 monthly. There was also his school, dietary requirements and a paid live-in caregiver, among other necessities.
With the pandemic and lockdown, his caregiver opted to return to her family, some of his medicines are unavailable because they are imported. For the ones available, his mother now buys at an additional cost.
Ahmed sometimes has seizures which only one particular medicine has been able to address. Rafat said, “I usually buy the 300mg pack of the medicine for N10, 000. He uses two and a half packs every month. I paid N10, 200 for it just before the lockdown.”
Rafat is not alone in this. There are siblings of children with special needs like, Ify Okenyi, who also double as their caregivers.
When Okenyi (31) learnt about the closure of schools due to the COVID-19 pandemic, she was worried about how it would affect learning for persons with special needs like her younger sister, Sandra who is autistic.
This is especially as learning is already limited in terms of proper processing, resources and standards for them and how they would further cope.
She said, “I wondered what level of access, to the already very limited therapeutic options, would be available to them.” She also worried over the kind of access their teachers, counsellors and other professionals, would have.”
Okenyi, a PhD candidate in Medical Law and founder of the nongovernmental organisation, Siblings of Special Needs Foundation, worries that disrupting the routine Sandra is already used to, would further complicate her already difficult situation.
Parents and caregivers of children with special needs are dealing with a challenge made even more chronic, in recent times due to the COVID-19.
Medications are more scarce to come by, learning centres are closed, just as routine therapy sessions have been disrupted to maintain social distancing and to curb the spread of the virus.
According to data by the Nigeria Centre for Disease Control (NCDC) about 200 of the 5,162 confirmed cases in Nigeria as of May 14, are children.
The data shows that those between the ages of 0 and 20 are less affected by the disease than adults. However, children with special needs fall under the category of people at high risk of contracting the disease for a number of reasons.
Describing these children in a publication as being, “among the world’s most vulnerable, marginalized and stigmatized populations,” UNICEF said, COVID-19, “will likely disproportionally affect those children with pre-existing vulnerabilities.”
According to the April 26 piece on UNICEF’s website, “Some underlying health conditions place children living with disabilities at higher risk for [sic] becoming infected with and developing severe illness as a result of COVID-19.”
Dr. Doris Izuwah (43) said, some of the reasons for this could range from lack of access to therapy, dietary requirements and increased cost of care and medication all due to the lockdown.
Izuwah, an autism specialist who also coordinates neurodevelopmental and special needs clinics in Abuja, explained that, “Some of the devices and special equipment they need like hearing aid, braille for reading, feeding tubes, dietary needs and regular dialysis for those with renal failure, may no longer be available or too expensive for parents to afford at the moment.
She added that, “Some of the children with cerebral palsy and down syndrome may need frequent hospital visits, which could further make them vulnerable to COVID-19.”
The most vulnerable in this category, according to UNICEF, are those with hearing difficulties, seeing and cognitive functioning, as they also face important barriers in the access to inclusive public health information and communication strategies that are crucial as preventative measures during pandemic periods.
With only two weeks supply of Ahmed’s medicine left, and Rafat toiling with the idea of rationing, which immediately forces out of her head, because of the risks, there are more concerns arising for others like her.
“I was not sure how to handle it,” said Dan (not real name), whose son is autistic and preferred to speak anonymously to avoid stigmatisation.
Dan (52) said, “These children have a pattern in life, especially my child. I was worried about how changing that pattern abruptly, would affect my child.”
For Dan’s son, there is also the concern of controlling his dietary and medical needs, which he is still trying to figure out, because they are mostly imported.
The lockdown has made the father of three more reliant on the internet, because, “there are a lot of things we have to do online, including his lessons. We didn’t have a computer, so we had to get one.” Some of the trainings his son is interested in, are on hold for now due to the lockdown.
Atika is 9-years-old and suffered cerebral palsy at birth. She cannot walk, talk or feed herself and is 100 percent dependent on others.
For her father, Abdu Abdulkadri (43), the most difficult challenge during the pandemic is getting her medication due to a lack of income and finances to purchase them. Abdulkadri, has sustained his family doing odd jobs since he has been unable to secure a permanent job.
With the pandemic and no income, Atika’s physiotherapy sessions have been suspended. He worries that without them, her seizures will return.
“She has been sick for the past three days, but it is only malaria. Thank God,” he heaves a sigh of relief.
The father of two fears that her seizures will return because he is unable to afford her medication which on a normal day cost him N30, 000 to buy only the essential ones monthly.
On the other end of the line, our reporter could hear the cheerful babble of an impatient Atika, who was eager to get on the phone like her father, to also have her voice heard. This was a pressure her father gladly succumbed to, to let her have her full minute of gleeful say of repeated, “fine” between heart-warming chortles.
Currently being without an income, even as an Economics graduate, means there is very little Abdulkadri can do for Atika whom he repeatedly referred to as “my lovely child, my beautiful daughter.”
Abdu’s relief was however short-lived. Three days after speaking with our reporter, Atika went into seizure which her parents are now treating traditionally with a combination herb.
Communication and non-communication
The United Nations Secretary-General, António Guterres, in his April 16 statement on the effect of the COVID-19 pandemic on children, urged governments, donors and the world at large to “prioritise the most vulnerable – children in conflict situations; child refugees and displaced persons; children living with disabilities.”
This call seems to have fallen on deaf ears.
Around the country, mainstream and social media as well as other outlets, are awash with public education pieces about the virus and what people need to know about COVID-19 and how to protect themselves. They include adverts, drama skits, syndicated messages by the NCDC, radio jingles and bill boards, among others.
But in all this, there is none targeting children with disabilities, beyond the sign language interpreter stationed in the background, during the Presidential Task Force briefings.
An April 17, YouTube video, anchored by Lois Auta, Chairperson and CEO of the Network of Disabled Women, calls for the inclusion of relief materials for persons with disabilities. In the 10-minute video, Auta said, “we want to see persons with disabilities have access to information, communication and technology, relief materials and humanitarian materials as organisations of persons with disabilities are funded to fight this pandemic, and persons with disabilities being part of the Presidential Task Force.”
While the video is worded to advocate for persons with disabilities, it seems to only focus on persons with albinism, the blind, deaf and those on wheelchairs.
Constance Onyemaechi, who suffers with albinism, ends the video calling on the government to help, “People with disability like me, and those on wheelchair” to access healthcare. For some reason, the likes of Ahmed, Atika, Sandra and Dan’s son, are not covered in the advocacy.
Boss Mustapha, Secretary to the Government of the Federation and Chairman of the Presidential Task Force on COVID-19 spared a thought for the disabled, at a briefing on Monday, May 11.
While confirming that states have been encouraged to set up isolation centres, wards and ICUs, each with at least 300 beds for levels one and two cases, Mustapha said, the rise in cases was causing bed shortages in isolation centres, especially in the high burden areas.
He said, “We are conscious of the need to take care of different categories of persons e.g. People living with disabilities, terminal conditions and other underlying factors / co-morbidities.”
A convention and the Child’s Right Act
On March 30, 2007, Nigeria signed the United Nations Convention on the Rights of Persons with Disabilities. On September 24, 2010, Nigeria gave a formal confirmation, ratification and assented to the Convention.
Article 7 Sections 1 and 3 of the Convention enjoin States Parties to, “ensure the full enjoyment by children with disabilities of all human rights and fundamental freedoms on an equal basis with other children” and that, “their views being given due weight in accordance with their age and maturity, on an equal basis with other children, and to be provided with disability and age-appropriate assistance to realize that right.”
Although Nigeria is one the 161 signatories to the Convention and its Optional Protocol, Bar Kola Ogunbiyi, Programs Manager at the Centre for Citizens with Disabilities, said, Nigeria has not lived up to the expectation of this Convention and has not complied with international best practices.
He said, “Nigeria has ratified the Convention but is yet to domesticate it. If you ratify without domestication, the enforcement of that convention is in variation with the provision of Section 12 of the 1999 Constitution which provides that, ‘any international agreement needs to be domesticated for its enforcement in Nigeria.’
“Even the Discrimination Against Persons with Disabilities Provisions Act, signed last year is similar to this Convention. But you can see that the Federal Government has not taken steps for the enforcement and implementation of that Act.”
Section 13 Subsection 1 of the Child Rights Act, provides that every child is entitled to enjoy the best state of physical, mental and spiritual health. According to Subsection 2, every government, parent, guardian, institution, agency, organization or body responsible for the care of a child shall endeavour to provide for the child the best attainable state of health.
On how Nigeria is doing regarding children with special needs during the pandemic, Ogunbiyi said, “the Right to health includes prevention and awareness campaign, access to health services.
“From the awareness creation, there is no particular awareness campaign that is targeted at persons with disabilities. Secondly, if you are looking at children, one would have expected that you look at a campaign that is attractive to children and interesting to watch. Things like animations and cartoons that will draw the attention of children so that they can be carried along with the campaign.”
When social service et al, are not so social and serviceable
There is also the question of the state of social services and social workers in Nigeria.
Samuel Omoi is a trained social worker and Head of Programs at Christoffel Blindenmission (CBM), a leading organisation in disability-inclusive development. He said, there is not much being done regarding social service for children with special needs during the pandemic, for two reasons.
Omoi said, “Many of them in institutions are back home with their families. The challenge would be following up on their wellbeing to ensure they are doing well. For those in institutions like orphanages, the response would be to find out what such homes are doing regarding children with disabilities.
While he says social workers are doing their best at the moment, he however, admits that “the preparation to respond to the pandemic was not there. There is a huge gap. A lot of this has to do with funding and if there is no funding nothing much can be done.
“Our preparation was not what it should be. The major challenge was that there was no fund to do what we should have been doing. And when there is no fund, you can at least provide information.”
Omoi said, this information is being disseminated via social media platforms. For families like the Adbukadris, this is beyond their reach as their current financial status makes purchasing internet data an absolute luxury.
Regardless, Auta’s call seems to have had some impact in the Federal Capital Territory (FCT). She is now one of the members of the FCT Persons with Disabilities Committee on COVID-19 Palliative inaugurated on 27 April 2020 by the FCT Minister of State, Hajia (Dr) Ramatu Tijjani Aliyu.
The committee also received 3,000 packs of food items including a 5kg bag of rice and a bag of condiment which contains 3kg of beans, 3kg of garri, a sachet of semovita, a sachet of salt, 10 sachets of tomato paste, five sachets of Power oil, 10 cubes of Maggi, and a sachet of sugar. These were distributed to people living with disabilities across the six area councils of the FCT with tens of thousands of disabled people.
Auta admits that, “we still have so many PWDs we could not reach.”
The Minister of Ministry of Humanitarian Affairs, Disaster Management and Social Development, Hajiya Sadiya Umar Farooq on May 9, supported disabled people in Karmajiji with 1,000 palliatives and has promised to reach out to 3.1 million of them, nationwide.
The forces are not with them
Rafat has done all in her power to ensure Ahmed has the best during the lockdown, but there is a lot not in her control.
She says, “We are missing out nearly completely in learning. He needs online materials. I need a system, electricity and internet. We both know the state of electricity in the country. This was worsened with my system crashing. We are unable to go online to access the resources we need. What we are doing at the moment is to revise some of the paper lessons we have so that he doesn’t get bored.
With social distancing now a recommended lifestyle, Rafat is glad that she has over the years learned to help Ahmed with physiotherapy but admits that, even though she can manage for now, there is still need for expert care.
In all of this, Rafat’s greatest worry is his medication.
She said, “We are already running low and we need to stock up. We are trying to raise funds for this. I am hoping that the pandemic is put under control so that production lines can open again. So, we can have our medications available. If production lines don’t open and the medicines are not produced, it means we won’t have them. If they are able to produce the medicines, but we are unable to import them, that would be a problem. I am already buying them at a higher cost. I see that even if it will be available, the price will increase. That wouldn’t be my major worry. My worry would be how I will get it.”
At as at May 15, Rafat said the medicine is no longer available in Abuja and she is trying to source it from Dubai where it was originally prescribed.
What is government doing?
Our reporter contacted an official at the Ministry of Health for comments about what the Ministry is doing regarding intervention for children with special needs during the pandemic and lockdown.
She responded to our reporter’s text message, asking for a physical meeting with our reporter at her office. Our reporter responded to this, letting her know that due to health reasons she would be unable to make it to her office and suggested a phone interview. The official neither responded to this message nor took subsequent calls from our reporter.
However, insiders told our reporter there was no plan for these children with special needs at this period of the COVID-19 pandemic.
Nigeria’s ‘Saving One Million Lives Programme for Results’ (SOML-PforR), is one that the WHO describes as “an elaborate scheme to expand access to essential primary health care services for women and children.”
Dr. Ibrahim Kana, the National Programme Manager said, “The Programme works in such a way that funds are provided to states as grants, and have been provided to cater for the poor and needy, including women and children with disabilities.”
Speaking on what specific funds are available for children with special needs and how they are accessed, Kana said, “the funds basically cover their basic Medicare, such as malaria, pneumonia, diarrhoeal diseases, ante natal, delivery and all immunization packages.”
He added that, “The funds are domiciled in the state ministries of health and [are] very easy to access. For states that have their contributory health schemes in place, that creates an easy entry for such categories of people.”
Responding to a question about any special arrangement under SOML-PforR for children with special needs during this pandemic, Kana said, “Remember that every citizen in Nigeria belongs to a state, the Federal Government doesn’t have any citizen. What the Federal Government does through its ministries, like mine, Health, is to develop policies and provide access to funds and funding to the states. Each state is to develop programmes that will address the needs of its people, which includes people with special needs.”
Rafat, who covered the health beat and also the launch of this programme, said as far as she knows, the project targets maternal and child health.
She explained that, “Your entry point as a mother is through antenatal. The project covers you and your child for basic health needs until the child is about two years. It is not a project that covers the child forever because you exit it at some point. What then happens to a child with special needs he/she exits the program?”
A challenge beyond Nigeria
This is not a problem that is unique to Nigeria. A report by the Canadian Broadcasting Corporation said, families supporting children with disabilities, feel forgotten.
In the report, Robin Acton, who lives with her adult daughter, who has Down syndrome, and her husband, who uses a wheelchair, complained about Alberta’s COVID-19 response.
She said, “As families who are supporting our sons and daughters with disabilities, who live with us in the community — we feel forgotten. We’re not even on the radar.”
Trish Bowman, CEO of Alberta Inclusion which advocates on behalf of children and adults with developmental disabilities and their families, said, it has become clear that people with disabilities are not being well-considered in the response to COVID-19 and that it needs to change.
Also, the March 16, update of the Australia and New Zealand’s Intensive Care Society (ANZICS) guidelines for doctors, admits that there may be difficult decisions made as the pandemic peaks.
Professors Helen Dickinson and Anne Kavanagh observe that, the guideline which recommends for doctors to make decisions based on the probable outcome, whether people have underlying health conditions, and the “burden of treatment” for the patient and their family does not, at any point, mention people with disabilities.
They pointed out that, “Evidence for previous pandemics shows that health inequities worsen during epidemics as more marginalised communities have fewer resources (financial and social) and struggle to access necessary supplies and services.
“On top of this, health information is rarely presented in an accessible format for children and adults with intellectual disabilities, such as Easy English (a style of writing that’s simple and concise) and/or pictorial formats.
A consideration to consider and the way forward
UNICEF wades in on the matter in a March 2020 publication, ‘Key Messages and Actions for COVID-19 Prevention and Control in Schools.’
While addressing support for vulnerable populations in the third chapter, it encouraged, “Work with social service systems to ensure continuity of critical services that may take place in schools such as health screenings, feeding programs or therapies for children with special needs.”
UNICEF also said, “Consider the specific needs of children with disabilities, and how marginalized populations may be more acutely impacted by the illness or its secondary effects.”
Canada has an Assured Income for the Severely Handicapped (AISH), with recipients receiving about $400 less than those who qualify for federal emergency funds.
But under current provincial rules, AISH recipients who lost part-time wages due to COVID-19 are not entitled to a federal top-up.
Following calls by the Self Advocacy Federation and by Marie Renaud, a legislator and the Opposition critic for Community and Social Services, there is now an ongoing review in Canada on decisions the government made regarding the treatment of the Canada Emergency Response Benefit for those receiving AISH and Income Support. The government is also working closely with the disability community to address concerns and assist in understanding and following directives.
Dickinson and Kavanagh stress that, “people with disabilities must not be de-prioritised. At a time when there is unprecedented demand for health services, we need to ensure people with disability don’t miss out.”
As a way of resolving the ‘oversight,’ Bowman said, “We’re having to actually walk things back and try and fix them rather than being included in the upfront planning. We feel pretty invisible.
Against this backdrop, it is very important that at all levels, all arms of government must do more than the nominal acknowledgement of the conditions of people with disabilities especially parents and their children.
Faith-based organisations, NGOs and civil society groups must continue to put pressure on government to pay greater attention to this situation.
If, as we say, it takes a village to raise a child, it will have to take a whole country to raise a child with disabilities and to reverse this sad situation.
This report was facilitated by the Wole Soyinka Centre for Investigative Journalism (WSCIJ) under its COVID-19 Reality Check project.