Carer’s Fund Programme Partner with Embassy of Finland on Rights of Women Abused for Bearing Children with Mental Disability
To date KSMH has identified 6 families which are being supported by the Carers Fund, with a family from Nairobi, Eastern Province, Western Province, Nyanza and two families from Central Province.
These families are often dependent on the sole income of the mother, who relies on casual labour. Even if the mother can find work, the family will generally have to survive on 600ksh a week. The situation is complicated further by the need for someone to remain at home with the disabled person, which frequently results in siblings missing school to care for them, thus jeopardizing their education.
The families tend to reside in 1 roomed house and are fortunate if they have 1 bed and a paltry blanket to share between 5 or more people. Many of the persons with disabilities are unable to walk, suffer from incontinence, and cannot even feed themselves. They are left in these inhumane conditions all day, with no hope for the future. The Carers Fund gives hope not only to those with mental disabilities, but also to their families and mothers who spend each day agonizing over how will they care and provide for their children.
Registration occurs at the KSMH offices and costs KShs 70/-. Registered Persons with Intellectual Disability (PWIDs) will then be called for an appointment for assessment by a mental health specialist. There are around 700 PWIDs registered so far for enrolment into the Carer’s Fund Programme. Appointments are made based on the PWIDs registration number in the Registration Ledger, and thus there is a huge waiting list for assessments. This assessment will provide an in depth profile of the PWID’s mental capacities and enable KSMH to determine the most appropriate course of action.
Rights of Women Abused for Bearing Children with Mental Disability Partner with Embassy of Finland
A new born child is always a joy to the mother, spouse, family and community. However, women who give birth to children with mental disabilities are highly stigmatized by their own community and society at large. The high levels of stigma often lead to maltreatment and abuse of these mothers. The innocent women face unfamiliar situations that are confusing and startling. This traumatizes and affects them very deeply.
A child in need of extensive support due to mental disabilities should be considered inspiring and divine. But when the mother, spouse and family are unable to cope, they consider the situation unfortunate and a curse or test from God/Universe.
The mother’s inability to cope in this case is misunderstood and labeled to be her problem, her challenge, her curse and/or bad omen. All, including the immediate family and spouse reject the mother, stigmatize and in most cases ostracize her from the community. The mother is abandoned and condemned for bearing the child with mental disabilities, and all her rights disregarded. She is made to bear the brunt of bringing up the child with mental disabilities.
The mother is one among 3.5 million women who are very highly disadvantaged by giving birth to children with mental disabilities. The disadvantaged women are unable to earn a living. The demand for intensive support for their children is a full time and life-long commitment. Even those mothers who have children with mild mental disabilities are unable to earn reasonable income due to interrupted work schedules. The result is women who are economically disempowered and fully incapacitated.
This category of women is deprived of the right to stay in marriage, family and community due to association with mental disabilities. They are denied the right to lifelong support for their children and adults with mental disabilities. They struggle very hard to cope with the burden of mental disabilities. Theirs is truly a labor of love.
It is time for this category of women to realize that the responsibility of providing intensive and life long support to persons with mental disabilities is one of the obligations of the Government. These women must salvage their rights including that of a parent. They must not succumb to unfair condemnation and judgment. If they are unable to cope with mental disabilities, it is the community and the government that is to blame, NOT themselves. The community and government have failed to provide sustainable and intensive support needed by children and adults with mental disabilities; thus showing a great deal of irresponsibility.
This right to support is provided for in Article 12 of the United Nations Convention on the Rights of Persons with Disabilities (UNCPRD) that Kenya has signed and ratified. This right to support must not be mistaken to imply guardianship. It must be adopted in Kenya’s legislation and entrenched in the constitution. This is the only way to develop relevant legislation, required to facilitate a mechanism that guarantees the right to support for persons with mental disabilities. The provision of sustainable support by the government will ease the burden of mental disabilities on mothers. This is the only way they will be able to reclaim their rights in society.
The concept of the Carers Programme of KSMH is a mechanism that expresses the right to basic support for children and adults with mental disabilities. The programme takes away the responsibility for full time care of children from the mothers, giving them an opportunity to go out and earn a living. The public should understand that the right to intensive and full time support for persons with mental disabilities is not exclusively the responsibility of the mother, the spouse and/or the family. It is to the greatest extent the responsibility of the Government.
The six-month campaign on the rights of women deprived of their fundamental human rights for bearing children with mental disabilities aims at:
1. Realizing correct interpretation of the right to intensive, fulltime and lifelong support needed by persons with mental disabilities.
2. Exonerating the women from the condemnation they receive from the public for having children and adults with mental disabilities.
3. Articulating the role of a mother in the lives of persons with mental disabilities as equal to that of other mothers.
4. Scrutinizing and defining the role of the community and the government in the lives of persons with mental disabilities.
5. Ensuring that the women associated with mental disabilities have their unique concerns heard and their rights respected.
6. Calling upon the members of the public and the government to action in establishing a Carers Fund that is the first mechanism aimed at providing sustainable access to basic support for persons with mental disabilities in Kenya.
Global Fund Round 7 HIV/AIDS program Partner with Global Fund Round 7 and Care International in Kenya
Background
With regard to HIV/AIDS, KSMH seeks to enhance supported access to HIV/AIDS services for persons with intellectual disabilities. The main objective of this programme is to increase sensitisation of HIV/AIDS Prevention and Treatment Services through home-based community outreach events. KSMH will develop behaviour change communication such as radio programmes and IEC materials to target PWIDs living with HIV and their families on Anti-Retroviral Therapy (ART).
Problem Analysis
Persons with intellectual disabilities are faced with many challenges both congenital and acquired, the most outstanding being their inability to develop basic social life skills and to make rational decisions on their own, leading to poor judgment in situations requiring rational thinking and inability to make decisions on matters as important as their sexuality and reproductive health. This problem is particularly worse for women and girls who are already disempowered by society, gender inequalities abound everywhere in most African Societies.
By virtue of their condition, PWIDs are exposed to a much greater extent to the risk of HIV infection than the rest of the general population. Their inability to make independent and informed decisions makes them highly vulnerable and exposes them to the risk of sexual abuse and exploitation, which increases the probability of infection and re-infection with STIs and HIV/AIDS. This is further complicated for the girl-child and women, through for instance, unwanted pregnancies, and frequently giving birth to babies with HIV as a result of the added risk of mother- to-child transmission during delivery or exposure through breastfeeding.
A false belief that PWIDs are not sexually active is another common contributing factor to the rise in their abuse and infection without commensurate intervention and outreach.
There is also lack of individualized approach in delivery of HIV/AIDS prevention, counselling and ART services for this particular population.
Rape and incest are common forms of sexual abuse and exploitation involving PWIDs within the family set up. This is usually concealed due to the shame, taboo and stigma attached to mental disability. Again, the identification of those exposed to the risk of HIV/AIDS infection is fully dependant on second parties and/or secondary signs such as pregnancy or presented STIs. The confinement of persons with intellectual disabilities to their homes and institutions deny them important access to HIV/AIDS services. Their families’, care-givers and community lack the necessary skills for the identification and provision of HIV/AID intervention services. In rare cases when efforts are made, PWIDs are taken to hospital (the only place their status is likely to be discovered), only as a last resort and good riddance as in majority of cases. The PWIDs are usually regarded as a burden. Consequently, cases of infection among PWIDs are discovered too late for any corrective support.
Furthermore, policy guidelines and the law as it currently stands excludes this section of population classifying them as persons of “unsound mind”, leading to national and other HIV/AIDS programs that do not recognize supported consent by PWIDs. Supported consent is a case whereby trained and certified human readers or care-givers receive and interpret information on a PWID’s behalf, provide and receive feedback and advise service providers on the subsequent course of action in the provision of counselling, testing services and ART. When working with a PWID it is important to grasp that each individual may use their own unique augmentative or alternative mode of communication. Therefore, a PWID requires their own individual human reader who comprehends this unique method of communication that they employ. Human readers do not speak on behalf of a PWID, but act rather as a support system and interpreter for the PWID, and consequently play a vital role in the sensitisation of PWIDs and assist in any subsequent decisions made regarding the uptake of counselling, testing services, and ART.
Factors influencing HIV/AIDS progression among PWIDs include:-
- Dis-empowered community members who cover up cases of sexual violation that expose PWIDs to HIV infections and re – infections.
- Poor reporting channels for identification and reporting of PWIDs in need of HIV/AIDS interventions.
- Lack of resources to enhance the role of PWID supportive institutions in coordinating the provision of HIV/AIDS services to PWIDs.
- Limited social support and interventions either directly to the affected PWID or through their guardians.
- PWID’s inability to voluntarily and independently access HIV/AIDS services due to the nature of their disabilities.
- PWID’s poor compliance to ARV treatment since they depend fully on the support of human readers who often are not trained on ARV adherence or are pre-occupied with other socio-economic activities lacking commitment of quality time on PWID.
Justification
Most HIV/AIDS programmes by the government and NGOs fail to provide specialized interventions for persons with intellectual disabilities (PWIDs). They have also failed to recognize this “most at risk population” of persons with intellectual disabilities often exposed to infection and re-infection through sexual exploitation that is often concealed by family and community. KSMH has been providing supported identification and individualized HIV/AIDS treatments, for persons with intellectual disabilities. The focus has been Nairobi, Thika and Maragwa districts where the organization has experienced increasing demand for additional intervention services. This program proposes to offer PWIDs increased and expanded interventions and supported access to HIV/AIDs information and services for the hard to reach population of persons with intellectual disabilities in Kenya.
It will promote identification of those exposed to the risk of HIV infection; increase prevention of new infections among PWIDs; and provide supported access to HIV/AIDs information and services such as counseling, testing and treatment. It will also aim to raise awareness for increased exposure and visibility of PWIDs, targeting the public with awareness on available HIV/AIDS services for persons with intellectual disabilities. It will increase sensitization and awareness of the public on modes of supported identification and individualized access to HIV/AIDS interventions services by PWIDS in the country. It will also endeavour to increase the number of human readers and care givers with relevant skills to support PWID access to HIV/AIDs sensitization, awareness, prevention care and treatment services.
As a spin off effect of this program, it is expected that at the national level it will influence recognition of persons with intellectual disabilities in the HIV/AIDS policies that include VCT guidelines and ART guidelines – and overall HIV/AIDS programming. Overall, the programme hopes to increase access to HIV/AIDS intervention services for WHO’s estimated 75% of disabled Kenyans with intellectual disabilities in Nairobi, Maragwa and Thika districts. (WHO, KSMH)
Sensitisation of the Youth – schools, colleges, universities, church youth groups Partner with Embassy of Finland on Rights of Women Abused for Bearing Children with Mental Disability
Mission Statement:
Promote active engagement of the youth of Kenya with contemporary issues surrounding intellectual/mental disability and encourage inclusion and equal opportunities for persons with intellectual/mental disabilities both within and outside the academic environment.
Objectives:
- To increase awareness amongst students of mental disabilities and encourage a sense of social responsibility towards those with disabilities;
- To create an inclusive environment for students of all abilities and promote integration in the student body;
- Inspire and motivate students to provide support for those who are experiencing difficulties, whether academically, socially or financially, and to become involved in projects aimed at promoting the well-being of those with disabilities.
Membership:
All students, teachers, youth leaders and staff from various educational facilities are welcome to participate. The programme will strive to be inclusive to all. Members are required to participate in fundraising activities and other projects. Members will receive certificates on completion of a full academic year’s active participation in the programme.
Activities:
Students will view films, both fictional (e.g. Rain Man, I am Sam) and factual, that highlight mental disabilities and social injustices. They will also be encouraged to read recreational and factual books on the subject, e.g. The Curious Incident of the Dog in the Night-Time by Mark Haddon and Warrior Mothers by Jenny McCarthy.
Students will be encouraged to engage in debate regarding current issues in mental disability. They will be asked to contribute suggestions of what individuals, KSMH, and the government can do to alleviate the suffering and improve the living conditions for the mentally disabled in Kenya. Guest speakers can be arranged to give talks at the schools or educational institutions from KSMH and possibly speakers from other prominent organizations.
Visits to special schools for mental disabilities will also be arranged as well as other activities that will immerse them in current issues. Activities that will unite all educational facilities with special schools or units for the mentally disabled will be encouraged, e.g. School Olympics with a Special Olympics component, providing an opportunity for all students to compete.
Other inclusive fun days will be organized such as arts and crafts days, music and sports days. These will have a broad spectrum of activities that can cater for students of all abilities.
Each academic term a newsletter will be produced, outlining the programme activities and achievements, and encouraging further support from the student body.
Activities will be chosen with the ultimate goal of improving awareness and understanding of mental disabilities, and to encourage students to take initiative when they see injustices being carried out.
At the end of the academic year each school’s performance will be assessed. Assessment criteria will include the number of inclusive fun activity days implemented, the success of any fundraising events, percentage of school attendance at the KSMH Moi Day Walk on the 10th of October every year, active engagement of the school with KSMH, student awareness of disability which was cultivated through exposure to a combination of material on mental disability and direct involvement with those with mental disability both at club level as well as school level. The most successful school will receive a prize of distinction from KSMH and our corporate sponsor.
Constitution of Kenya – On-going Processes at KSMH
As per the Mission and Vision at KSMH:
KSMH Vision
To realize a Country where recognition, equality, justice and inclusion of persons with intellectual disabilities and their families is respected and actualized.
KSMH Mission Statement
Actively Promoting identification, acceptance, inclusion and equal opportunities for persons with mental disabilities and their families in Kenya
Gaps in the Constituion of Kenya
The people with intellectual and mental disabilities are different from those with other forms of disabilities. They are people who on a daily basis for life fully depend on supports to exercise their rights including the very basic of rights. The understanding of a person in the draft constitution is one that is productive, autonomous/independent and with significant contribution to the development of the country. This does not apply to persons with intellectual and mental disabilities. They are persons in need of significant supports on a daily basis for life. This has a serious consequence on the rights of women who bear children with intellectual and mental disabilities. This large population of women who bear children with mental disabilities are expected to be different from the ordinary mothers.
The draft constitution under the bill of rights has provided for the elderly but not persons in need of intensive support on a daily basis for life due to mental disabilities. While the elderly in most cases are retirees with significant amounts of property, persons with intellectual and mental disabilities are hardly productive even in adulthood despite the need for high level of supports throughout their lives.
The draft constitution should recognize this category and guarantee the right to supports from the Government. This kind of support must be distinguished from guardianship. While the parents, family and community have their ordinary role in raising children, extra support needs are the responsibility of the Government. This is not provided for in the draft constitution.
The draft constitution has in many clauses provided for institutionalization of persons with disabilities and the use of substituted decision making. This is highly subjected to persons with mental disabilities and is illegal and against the provisions of the UN Convention on the Rights of Persons with Disabilities.
Finally the Gender Commission as established in the draft constitution lacks the capacity to deal with technical aspects required to ensure access to supports in the exercise of personhood and legal capacity by persons with all disabilities.
The draft constitution should be able to recognize this large population of 3.5 million Kenyans, and entrench clauses that guarantee life long supports needed to guarantee access to human rights and fundamental freedoms.
Assessments and Enrolments – On-going Processes at KSMH
The Programme of Early Identification, Assessment and Management of Mental Disabilities
Early Identification
Children are born and go through developmental milestones in their early years. They cry, make sounds, crawl, walk, and begin to recognise things and people at certain ages. Many times the children do not follow the average rate of growth and development. One may find, for example, that a child is not able to sit properly when she/he should. When such circumstances arise, they are of great concern to parents. It would then be better to take that child immediately to the specialists to see that his/her basic functions are sound. These are early signs of what may turn out to be developmental and intellectual disabilities. Many of such disabilities can be identified at very early stages. Therefore, it is crucial for parents to take their child to specialists if they notice any problems of development of the child in the normal way. Help is available to the parents through KSMH for advice, information and specialised support.
Assessment
Once a child is suspected of having some difficulties in growth and development, the child has to go through a process that will determine the degree and type of developmental and/or intellectual disability. Early identification helps in preventing severe and profound disabilities that are more difficult to manage. The recognised way of identifying and assessing intellectual and developmental disabilities in a child must be multi-disciplinary and holistic in nature. That is why all key specialists must be involved in assessment, screening and diagnosis as follows:
1. Timely support services for affected parents and families
2. Assessment, Screening and Diagnosis using Standard Assessment tools and Specialised equipments
3. Neurologist services
4. Cinical Psychologist services
5. Psychiatrist services
6. Educational Psychologists
7. Speech, Occupational and Physio therapists
8. Nutritionist services and Therapetic drugs as needed
9. Professional counselling and empowerment services for the parents and families
Management
All of the above processes will culminate in a management plan for the child to be implemented by the parents with the support of specialists in the centre. This plan provides guidance to the parents on how to handle the child and meet the specific needs of the particular type of mental disability. The management plan will be reviewed every three months to see that it is effectively working for the child and suitable to parents and family. Special nutrition and prescribed therapeutic drugs will be provided by the programme.