The Sunday Mail
Disability Issues
Dr Christine Peta
IN this article, I continue to unpack the provisions of the National Disability Policy which was launched by President Mnangagwa on June 9, 2021.
The Ministry of Public Service, Labour and Social Welfare, led by Honourable Minister Professor Paul Mavima oversees the implementation of the National Disability Policy, thus moving the provisions of the policy from paper to the real world to make a positive difference in the lives of persons with disabilities and their families.
The focus of this article is on Section 3.8 (Habilitation and Rehabilitation) of the National Disability Policy. I have moved from Section 3.3 (Living Conditions) last week to Section 3.8, to enable us to recognise the upcoming Moebius Syndrome Awareness Day.
The Moebius Syndrome Awareness Day is an annual event celebrated globally each year on January 24 — the birth date of Professor Paul Julius Moebius, the doctor who first diagnosed the condition in 1888.
I, therefore, begin by explaining what Moebius syndrome is all about, and then later explain the tenets of Section 3.8 of the National Disability Policy thus illuminating the importance of habilitation and rehabilitation for persons with disabilities including persons with Moebius syndrome.
Moebius syndrome is a rare condition that is present at birth and that causes weakness or paralysis of certain cranial nerves.
The cause of Moebius syndrome is unknown — medical literature presents conflicting theories, and in some instances the syndrome is linked to a combination of genetic and environmental risk factors as well as parent to child transmission of the syndrome.
Signs and symptoms vary widely, but they often centre around the face, and in most cases the eyes and the mouth. The first symptoms of Moebius syndrome may be the inability to suck, as well as problems with swallowing and feeding.
Persons with Moebius syndrome have no facial expression — they are unable to smile or to frown, or to raise their eyebrows or to close the eye on one side. They may also have hearing impairment and limb impairment that may include club foot.
Persons with Moebius syndrome may also have musculoskeletal conditions that result in disability. Musculoskeletal conditions consist of more than 150 conditions that affect the locomotor system of individuals, hence the conditions are the leading contributor to disability worldwide.
Musculoskeletal conditions range from those that arise suddenly and are short-lived such as fractures, sprains and strains, to those that are life-long and are associated with ongoing functioning limitations and disability.
Musculoskeletal conditions are also typically characterised by pain, including continuous lower back pain, as well as limitations in movement, dexterity and overall level of functioning of one’s body, thus reducing people’s ability to learn and to work.
Is there a cure for
Moebius syndrome?
There is no specific cure for Moebius syndrome, but treatment is supportive and in accordance with symptoms. For example, to ensure adequate nutrition, infants may be fed through tubes or special bottles. In some instances, surgery may improve jaw and limb function or correct crossed eyes.
Speech therapy may improve speaking abilities and physical therapy may improve motor skills and co-ordination. Nerve and muscle transfers to the corners of the mouth have in some instances been undertaken and they have provided limited ability to smile. Intelligence testing may be done to detect learning difficulties, autism and visual apraxia.
Section 3.18 of the National Disability Section 3.18 of the National Disability Policy addresses the subject of habilitation and rehabilitation. Considering the description of Moebius syndrome which I have unpacked above, there is evidence that some persons with disabilities including persons with Moebius syndrome may require high levels of habilitation and rehabilitation.
Habilitation refers to a process aimed at helping people to gain certain new skills, abilities and knowledge, which they have never had. Rehabilitation refers to helping people to regain skills, abilities or knowledge which they have had before, but which they may have lost or compromised as a result of acquiring disability through for example disease or accidents.
In line with the United Nations Convention on the Rights of Persons with Disabilities (2006), which Zimbabwe ratified in 2013, and the WHO Rehabilitation Initiative 2030, the National Disability Policy is promoting the provision of primary therapy in places that are closer to the doorsteps of persons with disabilities [including persons with Moebius syndrome] in both the rural and urban areas of Zimbabwe.
The idea is to ensure that habilitation and rehabilitation is made available to all people including people with Moebius syndrome and through all stages of the life course.
The National Disability Policy is also calling for the training of both Community Care Workers (CCWs) and Village Health Workers (VHWs) on disability issues. Strengthening the capacity of CCWs and VHWs is important because they are closer to the families and communities where people live, thus quickening early identification and referral of cases. Such an approach is important because delayed identification and referral may result in worsening conditions and further complications and lifelong problems.
The National Disability Policy (2021) also calls for persons with disabilities themselves to be trained to become habilitation and rehabilitation professionals, in a context where a minimum of 15 percent of habilitiation and rehabilitation students per enrolment must comprise persons with disabilities, thus upholding the principle of the SDGs-Agenda 2030 of leaving no one behind The National Disability Policy (2021) is also directing the provision of assistive devices that relate to habilitation and rehabilitation so that they are readily available to persons with disabilities and their families, including knowledge about their use.
The Department of Disability Affairs in the Ministry of Public Service, Labour and Social Welfare, and the Department of Rehabilitation in the Ministry of Health and Child Care, and other stakeholders that include UNICEF and the Clinton Health Access Initiative (CHAI) and persons with disabilities and their representative organisations in Zimbabwe, are currently and jointly working together on a project that is mapping manufacturers and suppliers of assistive devices for persons with disabilities in all the 10 provinces of Zimbabwe.
The aim is to strengthen the provision of appropriate assistive devices and to ensure easier and safe access to assistive devices by persons with disabilities including persons with Moebius syndrome, thus also strengthening habilitation and rehabilitation services for persons with disabilities including persons with Moebius syndrome in Zimbabwe.
The identification of enablers and barriers through this project is expected to in part, move the national disability and habilitation and rehabilitation agenda forward.
Dr Christine Peta is a Disability, Policy, International Development and Research expert who is the National Director of Disability Affairs in Zimbabwe — she can be contacted on: [email protected]
