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NGO spearheads campaign to help persons with deaf blindness

18th December 2012
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Correspondent Gerald Kitabu this week interviewed Sense International-Tanzania Community-Based Rehabilitation programme officer Benjamin Kihwele on special needs for persons with deaf-blindness: EXCERPTS:

QUESTION: What are the special needs for persons with deaf-blindness?

Answer: Before I talk about special needs, I would like to highlight on what exactly deaf-blindness is and the associated challenges. First of all many journalists and other people confuse a term deaf-blindness and term deaf and blind. Here we are talking about deaf-blindness as one word and not deaf and blind as many prefer to call them.

Deaf-blindness is a combination of deafness or severe hearing impairment with blindness or low vision. Sometimes these sensory impairments converge in later life. More commonly, deaf-blindness is either present from birth or acquired in early infancy.

Some deaf-blind children are both profoundly deaf and profoundly blind. Others have either some residual vision or some residual hearing or both. Severe impairment of hearing and vision is very often further complicated by other physical, neurological or cognitive problems, including epilepsy, cerebral palsy, heart problems, and or intellectual impairment.

Thus, deaf-blindness is highly complex and varies considerably from person to person. Without early diagnosis, assessment and intervention, the child’s potential for learning and communicating narrows rapidly, along with her horizons for physical and intellectual development. If left alone on a bed in the corner (or on a mat on the floor), her muscles may atrophy, her joints stiffen, and her hands whose fingertips can become a major learning and communications tool—can curl into an impotent fist.

As a result these people are faced with many challenges. In The challenge of learning to communicate is perhaps the greatest one. Another challenge is to engaging in interactions to the best of their abilities and of availing themselves to the language opportunities provided for them. There is also a challenge to learn on how to move about in the world as freely and independently as possible.

Just think of the many thousands of words and sentences that most children hear before they speak their own first words, and think of massive objects children with vision can see around the world which stimulate learning process that a total deaf-blind by birth does not see.

With these few examples, you can imagine the magnitude of the problem they face. Further more, a child who is deaf-blind needs comparable language stimulation, adjusted to his or her ability to receive and make sense of it. Parents, caregivers, and teachers have to provide an environment rich in language that is meaningful and accessible to the child who is Deaf-blind because through language they can socialize and learn to utilize environment around them.

Therefore the special needs for deaf-blind people mostly depend on the type of deaf-blindness and individual challenges each one of them face. For example, in communication, total deaf-blind need tactile sign language so that they communicate with other people.

Partial deaf total blind, may use their residual hearing capacity to learn Braille and they need white canes and the same time may need hearing aid to amplify their hearing ability. Some of them with physical impairment should be supported with facilities such as wheel chairs.

Apart from the above, they constantly need vision and hearing assessment and therefore advised to get assistive devices as per medical practitioners’ advice.

Q: As a programme officer for Sense International-Tanzania, what actually is your role?

Ar: My role is to provide technical support to staff of organizations that are implementing CBR services to deaf-blind people and to collaborate with like-minded organizations to ensure provision of comprehensive and cost effective CBR services for deaf-blind people.

Q: What are the causes of deaf-blindness?

A: Medical literature, based on developed-country research, associates deaf-blindness with dozens of causal factors and syndromes some genetic, some acquired through communicable diseases, some related to premature and difficult birth. In the Western literature include, prominently:

Congenital Rubella Syndrome: where the rubella virus (sometimes also known as ‘German measles’) is passed from mother to child in the womb. Another cause is usher syndrome. This is a genetic disorder where children are born hard of hearing and blindness develops progressively.

There is also complicated, premature birth, causing bleeding in the brain. Also in the list are meningitis, encephalitis and other infections of the central nervous system. However, malaria and other tropical fevers receive much less attention in Western literature but are considered likely causes or contributory factors in Africa.

Q: You have hinted on communication and social interaction as greatest challenges, how can people communicate with them?

A: Well, the means of communication varies considerably from person to person. Others may use; tactile sign language, sign language, Braille writing and reading, gestures, touch cues, lip reading speech, finger spelling, and the use of object symbols, and picture exchange communication system(PECS).

Q: What role does Sense International play to address problems and challenges facing people with deaf-blindness in the country?

A: As Sense International with the support from the European Union, we have established seven units of deaf-blind children and that now there are ten units of deaf-blind children countrywide. There are 56 deaf-blind students getting special education in these units. We also work with partner organizations (NGOs) to improve comprehensive services under Community Based Rehabilitation program.

In Tanga, for example, we work with youth with disabilities community program (YDCP), in Morogoro we partner with Safina Women’s Association (SAWA), and in The Coast region we work with Tanzania Resource and Assessment Centre for Disabled Children (TRACED). In the community programme, 42 deaf-blind children are receiving home based services.

Furthermore, we have managed to help parents with deaf-blind children to have their organization for advocacy and awareness raising issues pertaining to deaf-blindness and services.

They have now registered their association called Tanzania Association of Parents with deaf-blind children which has more than 90 members. In schools, we have trained teachers on appropriate service delivery to deaf-blind children.

In September to October, 2012 we facilitated Patandi teachers college of Special needs education to establish a deaf-blindness course (which is under way), that will assist the education sector to have a pool of teachers. From time to time, we have been providing training to house carers on taking care for deaf-blind children.

There has been some significant success at various levels. The education work, CBR and parental activism have increased recognition of deaf-blindness through community sensitization among government staff, medical and rehabilitation professionals, traditional healers and to community leaders. We have also facilitated assessment of deaf-blind children and provided with assistive devices to those who were recommended for by doctors.

Q: What support do the deaf-blind get from the government?

A: First of all before explaining what kind of support they receive from the government, I should say that it is well known that the government has the duty to provide comprehensive and appropriate services required to deaf-blind as it is proposed in the Universal Declaration of Human Rights, United Nations Convention on The Rights of Persons with Disabilities (UNCRPDs), and according to various conventions and policies that Tanzania have developed, or domesticated. It is luck that all the documents have guidelines on the provision of comprehensive services; but it is sad that government does not providing much of what is required and, or committed to provide.

For example, healthy services, specialized trainings to specialist teachers of deaf-blind learners on knowledge and skills, to helping them, and the provision of appropriate teaching and learning materials are still lagging behind. For example, teacher ratio needed is 1:1 but now it is 1:3. Furthermore, there are fewer caregivers in schools and they are paid meager. Frankly speaking government is not serious in this.

However, despite all these, I should say that government extends support to specialist teachers of deaf-blind learners by paying them salaries, it has built some classes and dormitories, provided meals at school work places, and bus fare to and from child’s home during long school vacation.

Q: Finally, what is your call to the general public, government and other stakeholders?

For the government, it has the duty to take care for deaf-blind children. There is very limited support from the government. There should be 100 percent coverage of universal primary and secondary education, or vocational trainings, and comprehensive health services such as assessment, medication and assistive devices to all persons with disabilities.

These services and many others should always be available in government referral hospitals for free without restrictions. In this circumstance, it seems hardly surprising to find some inactive government policies, and some inactive government employees tasked to oversee all issues of persons with disabilities.

Government should not be proud of having policies and UN conventions which have been ratified and domesticated, but should be proud of putting the ratified connections into force for the welfare of persons with deaf-blindness. There is an alarm, may be the government does not know that persons with disabilities want their matters be handled under President’s office or Prime Minister’s officer instead of being handled in the Ministry of Health and Social Welfare where it is put under department of social welfare. Openly, this implies that they are not satisfied by the way they are treated.

Government should sit down and reassess on what they should do to seriously address these challenges. They should work with persons with disabilities or their representing organizations to listen to their arguments.

For other stakeholders, and for the entire society; it is sad that the society does not easily acknowledge the grief of a parent whose child is born with a disability, families where a loved one is diagnosed with life threatening illness, incidence of couple or family breakdown when a child with disability is born, household poverty after having children with severe challenging issues, and families affected by AIDS/Aids.

It is time now to unite force as once US-Secretary of state Hillary Rodham Clinton said, ”It takes a village to raise a child’’. Special thanks to the European Union to recognize this and support the mission entirely.

The constitutional review process which is currently collecting views of the people for the new constitution which is set for 2014, should incorporate matters pertaining to comprehensive services for persons with disabilities including marginalized groups.

SOURCE: THE GUARDIAN