NATIONAL COUNCIL FOR PERSONS WITH DISABILITIES (NCPWDS)
CALL FOR APPLICATIONS FOR PROMOTION AND PROTECTION OF RIGHTS OF
PERSONS WITH ALBINISMS IN KENYA THROUGH PUBLIC AWARENESS
The National Council for Persons with Disabilities (Council) is a State Corporation established under the Persons with Disabilities Act No. 14 of 2003 to champion for the rights and equalization of opportunities for different categories of Persons with Disabilities at the national, regional and international levels as well as the interface between the three.
Under section 7 of the Persons with Disabilities Act, the Council is mandated to inter-alia co-ordinate services and goods provided in Kenya for the welfare, habilitation and rehabilitation of Persons with Disabilities including Persons with Albinism.
Aware of resolution 23/13 of the United Nations Human Rights Council on systematic attacks, stigma and social exclusion directed at Persons with Albinism, the Council hereby call for applications for grants from interested organizations of persons with albinism to promote and protect rights of Persons with Albinism in Kenya by partnering with the council in order to carry out awareness activities across the country.
Prospective applicants are required to inter-alia be duly registered with relevant government agencies and must have practical hands on working experiences with Persons with Albinisms.
APPLICATIONS INFORMATION AND REQUIREMENTS
For full information and requirements regarding this call, prospective applicants are required to submit a detailed proposal in line with further information from Council’s website (www.ncpwd.go.ke). Prospective applicants are required to read, understand and comply with these additional information and requirements before submitting their proposals.
Completed application should be sent or delivered in both soft and hard copy to:
The Executive Director
National Council for Persons with Disabilities
P O BOX 66577-00800
The deadline for responding to this call is on 20TH November 2019 at 5.00pm
NATIONAL COUNCIL FOR PERSONS WITH DISABILITIES
REHABILITATION AND HABILITATION PROGRAM (ALBINISM DIVISION)
TERMS OF REFERENCE FOR AWARENESS ACTIVITIES ON ALBINISM
The National Council for Persons with Disabilities (NCPWDS) is a parastatal established by an Act of Parliament-the Persons with Disabilities Act No. 14 of 2003. The Act provides for the management, powers, functions and duties of the Council and for connected purposes.
The main objective of the Council is to ensure that Persons with Disabilities are empowered socially, economically and politically to maximize their full potential, have access to regular services and opportunities and become active, contributing members to the process of Nation building.
Persons with Albinism are derogatorily referred to as ‘Albinos’ and are deliberately excluded from mainstream development and social life. There exist various myths about why children are born with the genetic impairment ranging from witchcraft, curses, bad omen to unfaithfulness of the mother with men of other races especially the Caucasians. This therefore means that from the onset, many children with albinism are treated as outcasts by the society. It is a common practice to hide PWAs from the public and to shun them in community life at times under the guise of protecting them from the sun.
The situation is made worse by ritual killings of persons with Albinism, due to the false misconceptions that their body parts could bring fortunes and good luck there is therefore a dire need to sensitize communities and the public on issues relating to albinism if such incidences of gross violation of human rights are to be permanently abetted. Therefore there is need to address the whole awareness issue under the following key pillars;
- Equalization of opportunities; measures provided in the policy are to ensure that persons with albinism are accorded opportunities on an equal basis with able-bodied persons through affirmative action.
- Human rights approach to the albinism agenda: The principle underscores the conscious departure from the ethos of charity to the articulation of human rights and development approach to disability concerns. Hence, the approach provides for protection from discrimination based on real or apparent grounds.
- Mainstreaming: Persons with albinism are part and parcel of the society and hence, their needs should be addressed within their communities and not in isolated service delivery settings.
OBJECTIVES OF THE AWARENESS
The identified group will be required to help the council achieve the following objectives;
- To enlighten persons with albinism and their parents/care-givers on health conditions arising from the condition of albinism so that they can take appropriate and timely health actions.
- To advocate for availability of enabling environment for access to health services by persons with albinism
- To equip the target clients with knowledge on health conditions associated with albinism to inform timely and right health action by the people with albinism, parents or their care-givers.
- To equip persons with albinism, parents and care-givers of persons with albinism with self-care and protective measures for skins of persons with albinism
- To equip target clients with information on causes and types Albinism
- To demystify Myths and Misconceptions about Albinism
- To provide factual information on the basic biology of albinism to people in the community of persons with albinism
- To provide factual information on socio-cultural beliefs and misconceptions that underlie external stigma from people in the community of the persons with albinism in order to demystify myths and misconceptions about Albinism
- To enlighten people around persons with albinism on the condition of albinism
- To demystify socio-cultural contexts and misconceptions underlying external and internal stigma
- To equip target clients with information on causes and types Albinism
- To lobby the government of Kenya to provide adequate and relevant health services for persons with albinism
SPECIFIC TASKS AND DELIVERABLES:
- Increase profile of network of association and organisations that advocate for the rights of persons with albinism
- Advocate and educate as well as assisting Persons with Albinism to access external information, education bursaries, healthcare and other community support available to assist with their genetic condition
- Improve the lives of Persons with Albinism by establishing a well-staffed office and resource centres.
- Improve the lives of persons with albinism, such as raising awareness about sun protection, educating teachers about simple steps to make materials accessible, and countering the prejudices of family and community.
- Raise the profile of albinism at the national and county levels.
- Publicly condemn persecution of people with albinism for their body parts, and preserve their rights to life and security including initiating legal action against perpetrators of attacks against persons with albinism, public condemnation of attacks against persons with albinism, and public awareness-raising campaigns
- Open up new perspectives on albinism and the exchange of knowledge on albinism
- Ensure the effective protection of persons with albinism and members of their families;
- Take effective measures to eliminate all forms of discrimination against persons with albinism, and to increase education and public awareness-raising activities;
- Promote, in collaboration with relevant regional and international organizations, bilateral, regional and international initiatives aimed at protecting persons with albinism;
- Address the relevant aspects of the safety and non-discrimination of persons with albinism
- Ensure accountability through the conduct of impartial, speedy and effective investigations into attacks against persons with albinism, the prosecution of those responsible, and by ensuring that victims and members of their families have access to appropriate remedies;
- Provide information and support regarding albinism and related conditions, to promote public and professional education about these conditions, to encourage research and funding that will lead to improved diagnosis and management of albinism, and to provide networking for those with special interests related to albinism such as minority groups
- Spread knowledge about albinism and work to improve attitudes towards those with the condition through television appearances, newspaper articles, billboards, information packets for libraries, media campaigns and outreach to professionals, and networking with support groups for people with albinism in other countries, and promoting the development of albinism support groups
- Offer information and support to people with albinism, their families and the professionals who work with them.
- Bring together persons without albinism, researchers, NGOs and associations to facilitate the sharing of knowledge and expertise across disciplines and to open up new areas for possible collaboration.
- Prevention of attacks on Persons with Albinism
- Advocate for Specific needs of Persons with albinism including Security, displacement from insecurity; discrimination ,skin cancer, protective clothing, optician services, assistance in participating in mainstream primary and secondary education and vocational training to maximize the chance of indoor work out of the sun.
- Take all measures necessary to ensure the effective protection of persons with albinism and members of their families; including initiating legal action against perpetrators of attacks against persons with albinism, public condemnation of attacks against persons with albinism, and public awareness-raising campaigns
- The parties undertake to rescue and assist Persons with Albinism in distress situations and those predisposed to cancer and report to the Council of such rescue efforts for further action.
A detailed proposal is required that should demonstrate a proven and tested successful track record and experience in conducting awareness on issues related to albinism on the following forums;
- Chiefs’ Barazas
- Television and/or Radio talk shows
- Print Media
- Information packs
Also selected organisation must be able to provide the following information
- Current Registration certificates from relevant government agencies, including tax returns.
- Top management of the organisation must be persons with albinism/disability
- Registration with the NCPWD as an organisation for person with disability
- Must have a physical office with at least necessary staff manning the office and program activities. Must provide detailed CVs of the staff
- Must have working accounting structures within the organisation
DURATION AND CONTRACTUAL ARRANGEMENTS
- The duration of the grant shall be 6 moths or as shall be determined by a memorandum of understanding that will be signed upon successful selection of the organization.
Selected organizations shall be required to draw a timetable for awareness activities, execute these activities and provide comprehensive monthly report of all activities undertaken in the month coupled with documentary evidence which include but not limited to pictures, reports, and other materials of the activity.
Brief- Albinism Sunscreen and Support Program
The Council has been implementing the National Persons with Albinism Sunscreen Support Programme that is providing sunscreen lotions to over 3,026 persons with albinism. The programme is designed to carry out awareness and offer lip care and after sun lotion and other services for all persons with albinism in the country.
The major killer among persons with albinism in Kenya is skin cancer. This program which aims at mitigating the harmful sun rays (UVB and UVA) by providing free sunscreen lotion to all persons with albinism in the country was placed at the council in the year 2011 after the Government gave 100million for purchase of sunscreen lotions.
- Provision of sunscreen lotions.
- Provision of after sun lotions.
- Provision of protective clothing (Caps and Long sleeved T-Shirts.
- Cancer intervention.
- Provision of comprehensive Eye Care.
- Provision of lip care.
- Awareness activities which includes Dissemination Workshops, interactive sessions and media activities.
Provision of Lip Care, After Sun and Sunscreen Lotions
The programme is designed to cushion persons with albinism from the effects of harmful sunrays which causes skin cancer. This programme is currently providing sunscreen lotions to over 3,026 persons with albinism.
In order to achieve this, we have distributed sunscreen lotions to selected government hospitals across the country. These hospitals have been dispensing these lotions since The council engaged in consultations with stakeholders in order to procure the best lotions for PWA, currently, we are providing Nivea lotions where we are providing one bottle of sunscreen lotion every month to all PWA who are registered with us.
We have opened offices in each County where our officers have taken the initiative of registration for the new clients and help them in identifying hospitals that will be used as distribution centers. A total of 180 hospitals and Health Centres have been identified as distribution centers.
We endeavor to distribute the lotions in lower level hospitals hence making the product accessible to rural clients. Initially it was only up to level four hospitals that were being used.
The council takes into cognizance that there are occasions that PWA are exposed too much in the sun hence they require to cool the burning effect of the sun by applying after sun lotion. Thus the council has procured 18,000 bottles of after sun lotions. Each registered client is entitled to one bottle of after sun lotion to be used on two months.
Alongside the sunscreen lotions, the council has procured Lip Balm for the PWAs. All the clients are entitled to a piece per month.
The Council wanted to monitor the uptake of these products namely Lip Care, After Sun and Sunscreen lotions on sampled clients with albinism.
Provision of Protective Clothing (Caps and Long sleeved T-Shirts)
One of the recommendations of the experts on matters of prevention of skin cancer, apart from application of sunscreen lotion, is the provision of protective clothing and avoidance of prolonged exposure to the sun. Therefore, the council has procured long sleeved T-Shirts and Wide Brim Hats.
Provision of comprehensive Eye Care
The Council has set aside funds to provide comprehensive eye care for all PWAs in our record. A service provider was to be identified in order to support the Council in providing comprehensive eye care for Persons with Albinism in the entire country.
The selected firm/Hospital was to work closely and in collaboration with the National Council for Persons with Disabilities Program officer in charge of Rehabilitation and Habilitation.
A hospital Situated in Nairobi Westlands along Waiyaki Way at Pacis Centre called EYE & U was identified after advertisement and evaluation. The Council is paying for full check-up including cost for the eye glasses.
Over the last two years, the council has been supporting clients who succumb to skin cancer by paying for the medical bills. Before clients go to the pharmacist to collect lotions they are usually examined by the clinician first in order to help identify any signs of skin cancer.
Albinism Awareness Activities
Awareness program is being conducted by organisations for persons with albinism on behalf of the council. This awareness has targeted the community members and key stakeholders of this program. It was planned to give the public more information on albinism with a view of demystifying albinism.
Under this, we encourage PWA themselves to come together in forums which we call “interactive sessions” where we have PWA sharing their personal experience on how they handle various aspects of their condition. Parents interact with each other with a view of sharing important tips on how to bring up their children
- International Albinism Awareness Day
The UN Human Rights Council, resolutions 23/13 of 13 June 2013, on attacks and discrimination against persons with albinism, and 24/33 of 27 September 2013, on technical cooperation for the prevention of attacks against persons with albinism, culminated into November 18, 2014, the United Nations’ General Assembly adopting a resolution establishing June 13th as International Albinism Awareness Day. This historic resolution firmly fixes albinism advocacy at a global level.
The day celebrates the achievements of people with albinism and also creates awareness about albinism. The International Awareness Day is also a unique opportunity to promote laws and policies to better protect persons with albinism from all forms of violence and to overcome social misconceptions that lead to stigmatization and discrimination.
Five (5) Persons with albinism came from all counties in the country to celebrate this day on 13th June 2015 and show the world that people with albinism are just as capable as anyone else.
This calls for an elaborate media campaign to enable us achieve our goals and objectives of the program
We have currently set aside 30million to undertake this awareness.
The requirements for the Albinism Sunscreen and Support programme includes;
- Registration with NCPWD
- Proof of the requirements in the ranking criteria
- Full photograph
- Copy of National ID or that of the guardian if the person is under 18 years.
It is important to note the following about Albinism
What is albinism?
Albinism is a genetic condition where people are born without melanin(a chemical responsible for colour of the skin, eyes and hair.
Eye sight - Just as there are different degrees of albinism-there are varied levels of eye problems for PWA.
Skin – melanin does not just give colour but protects the skin from harmful sunrays
Dark people have more melanin-light skinned people are more likely to have sunburns-PWA therefore are exposed to high risk of skin cancer.
Albinism is not contagious
For a child to be born by parents of dark skin, both of them MUST be carriers of the gene i.e. it is recessive.The Sun's Rays
Although the colour of tanned skin is associated with good health, the sun can cause skin disorders. The sun's rays that a body receives are made up of different types of rays that have different influences on our skin:
INFRARED RAYS. These rays give a sensation of heat, but they don't burn and create a reddening of the skin caused by the blood vessels dilating. This reddening disappears after a few hours.
UVB RAYS. These rays penetrate the epidermis, where they stimulate the melanocytes, Melanocytes are cells that produce melanin, a dark pigment responsible for the coloration of hair and skin. Melanin serves a number of functions in the body and these cells are found in all people.
Coloration of hair and skin is determined not by how many melanocytes someone has, but how active these cells are. With conditions like albinism, for example, these cells are present, but their activity is inhibited and they do not produce pigment which causes tanning, which is nothing more than the skin's natural way of protecting itself.
Overexposure to UVB rays causes burns, which appear as reddening of the skin for a few days. Overexposure to these rays is a risk factor in the development of skin cancer.
UVA RAYS. UVA rays cause immediate tanning, leading to weak pigmentation after a few hours. Overexposure to these rays leads to premature ageing of the skin and an increased risk of contracting skin cancer.