TOSE was registered as a national Welfare Organisation in November 1992, registration number W017/92.
The present national headquarters in Prospect Industrial Park, Harare, have been functional since June 1998. Tose is not a permanent residential home and has a capacity of 50 clients.
The founder and first director of the project is Desi Page (née Matongo), a Zimbabwean.
In 1991, after months of research Page discovered that there were tremendous gaps in the care and rehabilitation of the severely, mentally and physically handicapped people in Zimbabwe and decided to start this new initiative.
Aims — To provide a service of relief and care of people with both mental and physical disabilities, especially the more severe who have multiple impairments, from five years. The service is community-based emphasising shared care and responsibility with parents and carers.
Objectives To provide: Residential respite care Consultancy services Assessments Outreach services.
Services offered 24-hour residential care Options for flexible residential care periods Rehabilitation programmes in speech and language, mobility and occupational therapy.
Catchment areas — Tose cares for people of all races and from all walks of life. Its policy is open referral. A referral letter will usually be sought from the client’s doctor to determine the client’s medical status. The home is open to clients from any part of the country.
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Organisational structure — Tose operates through a non-executive management committee, which is made up of people of various sectors of the community who offer their expertise and time on voluntary bases. The executive team which reports to the management committee is headed by the director assisted by the administrator/finance manager and home manager. The rest of the staff complement is made of a speech and language therapist, physiotherapist, occupational therapist, rehabilitation technician, care officers and assistants.
Finances — The financial affairs are controlled by the honorary treasurers. Accounts are audited yearly by external auditors.
Sources of funding — We get our financial assistance from well-wishers, be it foreign or local and small government grants.
Projects — We do self-help projects such as poultry, sewing and gardening.
Clientcare fees — Tose charges fees, but does not turn away the needy and strives to source donor funding for such.
How you can help Join us today and become a friend of Tose. Donate in cash and kind. Be an annual street collector. Right now we need all the assistance we can get to further our efforts and trust you will find a way of being part of us through your assistance. Contact with related organisations — Tose keeps liaison with other services in the field of learning disabilities, for example Zimcare Trust, St Giles Rehabilitation Centre, rehabilitation units in district and central hospitals. Jairosi Jiri, Zimbabwe Parents of the Handicapped Association, Children’s Protection Society, Education ministry, department of school psychological services.
Membership Tose is a member of: Nascoh (National Asssociation of Societies of the care of the Handicapped) ZNWC (Zimbabwe National Council for the welfare of Children.) Nango (National Association of Non-Governmental Organisations)
Physical location We are located at stand Number 763 of 759 Prospect Industrial Park next to Sunningndale 3 residential stands. From the central business district, Harare, drive along Seke Road towards Chitungwiza, turn right at Truworths head office into Cranborne Avenue West then follow Tose signposts.
Challenges faced by children with special needs
LABELS abound, some of them distasteful, some inaccurate, some just in vogue, others useful to understanding and planning. I am speaking about children who have substantial special needs. They may be diagnosed with complex disorders such as autism or mental retardation.
All are challenging to identify reliably, and even more challenging to treat effectively. We can add the physical disabilities of blindness, deafness, and a multitude of serious medical disorders that strike children and significantly limit their ability to function. Each of these disorders has books, websites and national organisations devoted to them.
Parents often know more about the specific disorder than any individual professional involved in treating the child because they devote hours to researching out all available information. The internet has made much more available including the ability to contact other parents with similar concerns.
Yet, as I recently listened to a group of such parents share their pain and frustration, I could hear some common issues being expressed repeatedly: the need for parental support systems, the reality that in many situations nothing really works to resolve the challenges their children present, the lack of social opportunities for their children, the impact on marriage, the impact on siblings, and fears about the future.
Parent support groups As I sat and listened to these parents share their painful stories, I felt particularly powerless. I had no magic solutions and rarely an idea that they hadn’t already heard from some other professional. Yet, as the meeting drew to a close they were so thankful.
The process of sharing their struggles face-to-face with other parents who understood them best made a difference. Some actually exchanged phone numbers and planned to meet again.
The main plea was the need to have ongoing support groups.
There was talk about the lack of respite from the 24/7 challenge of caring for these children. Finding someone to watch their child for a few hours so they could have time for personal, marital, or family activities was a universal challenge.
The typical sitter lacks the skills and even if one lives near family, they too often lack the understanding or patience required to help.
In fact extended family non-support was a key issue. Too often these parents are criticised by their own extended family for not being able to better manage the behaviour of their child with severe special needs.
The frequent result is avoiding attending family and community events.
These parents need a level of support that is difficult to give if you haven’t been in their shoes. The understanding that was shared within the group was very powerful.
It was especially helpful because these parents are very isolated and despite information that may be available, still end up feeling as if their struggles are unique and represent their failures as parents. But the emotional support and social connection was only part of the group’s value.
These parents knew so much that they were terrific resources about the latest information as well as being able to share what strategies or services had proven helpful with their child. So there was a practical, informational aspect to the value of the group. It was obvious in reflecting on this meeting that more community agencies need to commit to providing an opportunity for these focused parent support groups.
Online chat rooms help but talking to other parents in a real room, especially parents who live in the area and can become a true personal connection, is essential to the coping ability of these parents.
Impact on family Children with severe special needs drain enormous amounts of time, energy, and money. Marital problems are reported to be present to a greater degree because of the lack of time for nurturing the marriage plus the frequent problem of parents disagreeing on what needs to be done for the child.
Another source of tension is that often one parent is more effective in managing the difficult behaviors. The reduced couple’s time is especially important because there is more that needs to be discussed and dealt with including the feelings of grief and disappointment that sometimes never get processed.
The ability to learn to enjoy the positive aspects of the child and to take a more spiritual perspective about what all family members gain from having to address these challenges can only take place after having grieved the loss of what the parents had expected from that child at birth.
Sibling issues need attention. Parents and professionals alike often lose sight of the need to help siblings understand the problem that is affecting their brother or sister.
Then there is the challenge of trying to reduce the jealousy that results when so much attention is focused on one child as well as the frequent limitations on doing common family activities.
It is clear that siblings need an opportunity to voice their questions, concerns, and feelings.
Social isolation Some of these disorders are defined by problems in making social connections.
Others just present challenges that limit a child’s participation in typical social experiences resulting in the limited development of social skills.
Here we often get into a philosophical struggle. Getting an education takes up much of the focus of all children. In recent years the concept of inclusion has become required. This means that a child with severe special needs should be given whatever supports necessary in order to remain in the mainstream of regular education.
The most extreme form of this is when an aide is assigned to sit with a child in all (or most) classes to help the child participate to whatever degree is possible.
This is a fairly common plan for many children with severe special needs. — Kalman Heller, PhD psychcentral.com
