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[Last updated Friday, April 11, 2008]
Successful projects! What makes them work?
A cross-national analysis of 13 projects that have improved the quality of life of people with intellectual disabilities in India, Romania, Kenya and South Africa
By Anders Gustavsson, Johan Sandvin, Annika and Lennart Nilsson
Why is it that some projects significantly improve the quality of life for people with intellectual disabilities, but others fail? Is there a formula that can be used from country to country?
This study asks these questions and analyses the strategies and activities employed by projects in India, Romania, Kenya and South Africa. Early on, the team realised there is no such thing as a model or ideal project that works everywhere. The criteria for selecting successful projects must be culturally valid and that to learn something general requires an understanding of the specific. To do this, the team reviewed their aims and came up with a new conceptual framework and methodology. The 13 different case studies – seen from their local perspectives – were exceptionally successful. Although the strategies used and activities varied in the projects, they did share many common characteristics that brought about improved quality of life for people with intellectual disabilities and their families.
The implications for governments and donor agencies are far-reaching. Successful projects – what makes them work? suggests that new funding arrangements and criteria for assessing success are needed. The study concludes it is impossible to create a blueprint for success from the outside and impose it on an area. Only projects that grow from the passion, anger and despair of people on the ground can develop the necessary preconditions for success.
Successful projects – what makes them work? draws on four in-depth research studies carried out in collaboration with Inclusion International’s national member organizations in Kenya (KAIH), India (PARIVAAR), Romania (Inclusion for Romania) and South Africa (DICAG and DSSA).
Download the document ‘Successful projects – what makes them work?’
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THERE ARE FOUR NATIONAL REPORTS
Kenya
India
Romania
South Africa
Download the document First part
Download the document Second part
Download the document Special Anex on Nominations
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CASE STUDIES
The researchers in Kenya selected four projects for in-depth study:
click here to read more about the case studies:
The researchers in India selected three projects for in-depth study.
click here to read more about the case studies
There are 3 case studies in the Romanian national report.
click here to read more about the case studies
There are 3 case studies in the South African national report.
click here to read more about the case studies
PARENT MOBILISATION ACTION GROUP
Parent empowerment lies at the core of the inclusion of children and adults with disability in the family, in the community and in society. However, very often, the parents' organisations supporting people with disabilities lack the skills, knowledge or resources necessary to strengthen the opportunities for those they wish to care and advocate for. This is especially - though not exclusively - true in developing countries.
Inclusion International begun the Parent Mobilisation Action Group initiative, in order to:
Encourage parents of children with intellectual disability to become more involved in their national society at the local level in order to strengthen the organisation's effectiveness;
Empower parents and volunteers through organisational capacity building to advocate for improved education, health, employment and living arrangements for persons with disability, especially those with an intellectual disability;
Increase public awareness, visibility and community understanding of persons with an intellectual disability;
Seek sponsors and funding to assist the development and strengthening of the national organisation at all levels;
Encourage the adoption and application of the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities and acceptance of the Principles of Inclusion International,
Promote support for disability in the activities of the government, the UN system, donors and other stakeholders.
PMAG projects are initially planned for three years. Inclusion International either acts as direct project partner or as intermediary, linking up member organisations and funders. II identifies the projects it works with. Funding and practical support come from a variety of sources: international donor agencies, national governments, foundations, corporate sponsorship, member organisations of Inclusion International, local fundraising as well as donations from individuals overseas.
In order to achieve real progress at grassroots level and to ensure sustainable development, the projects usually focus on one region/district/state in a country. The project activities reflect and respond to the circumstances at local and national level.
Currently there are PMAGs in India, Indonesia, Kenya, the Philippines and Romania.
PMAG India
The PMAG India Program is a joint venture programme between Inclusion International and PARIVAAR - the National Federation of Parents' Associations ( for persons with Mental Retardation, Autism, Cerebral Palsy and Multiple disabilities) in India. The PMAG programme started in May 2000.
The main focus of this programme is promoting, supporting and strengthening vital programmes of Parivaar. Major objectives are empowerment of parents by disseminating information and creating awareness, increasing Parivaar membership, facilitating networking with Government, NGO's/Agencies, providing leadership training to Parent Associations and encouraging local fund raising.
The PMAG Programme Manager is Mr Vijay Kant. The programme follows decisions and advice of a Steering Group that is composed of two delegates of Parivaar ( Mr Jay Gadkari, President of Parivaar, and Mrs Saswati Singh) and two delegates of Inclusion International ( Mr Viji Iyengar and Mr Jan G.Vorstman, Chair). Mr Victor Wahlstrom is Special Advisor. The programmes are implemented in close consultation with the President of Parivaar.
Donations to finance PMAG Management costs have been from Lebenshilfe Austria, SIDA Sweden and several other sponsors. Organon ( Akzo Nobel) has provided a great variety of services and support.
PMAG India in the last three years has helped Parivaar to increase awareness, thereby furthering Parivaar membership from 50 to close to 150 member Parent Associations. The PMAG Programme has provided leadership training and supported Parivaar organisational development.
A pilot project has been initiated in West Bengal/North East part of India to implement Action Plans drawn up as a result of the Kolkata ( Calcutta) Round Table of April 2002. This self sustained project includes an awareness raising campaign, programmes for Inclusive Education, Inclusive Employment, Respite/Residential Care and Citizen Rights. This pilot project is meant to serve as platform and example for similar projects elsewhere in India. In this way a second Round Table was scheduled at Chennai ( Madras) in August 2003.
Legislation
India has enacted two legislations namely
a) The Persons With Disabilities Act of 1995,
b) the National Trust Act of 1999 in conformity with UN directives.
However, its implementation has so far been a slow process. Parivaar - the only National organisation that speaks for persons with developmental disabilities - in collaboration with other frontal National Advocacy Organisations is involved in pressuring the government to implement these two legislations.
It has very recently been decided to continue a PMAG Programme for another three-year period (till May 2006).
For more information contact:
Vijay Kant
Programme Manager
Programme Manager
PMAG India
522/6, 24th Cross,
Egipura, Bangalore 560047
Tel: +91-80 -5713974
E-mail pmagindia@vsnl.net or vkant47@yahoo.com
PMAG Indonesia
It is estimated that less than 10% of the children of school age with a disability in Indonesia attend school. The majority of schools (yayasans) are privately owned, often by parents. They are segregated from other schools, and requiring parents (usually the mothers) to walk with their child to the school - some for up to 5 miles. The parent then waits outside to take the child home after school.
PMAG in Indonesia was initiated in February 2001 with a partnership between Inclusion International's member organisations FNKCM Indonesia and IHC New Zealand.
In 2002, 10 seminars were held with a total of 822 participants, 503 of whom were parents. At each gathering, parents were encouraged to complete a survey form that sought answers to some basic questions. 678 survey forms have been processed in which 839 children and adults with various disabilities were identified. We endeavoured to identify individual unmet needs of family members but only 154 completed that section with 111 requesting further parent training.
The project is in its 3rd year now and it focuses on one region of Indonesia: East Kalimantan (during the previous two years the programme had been implemented in various parts of Indonesia). It is funded by the New Zealand government, IHC New Zealand, local fundraising and overseas sponsors.
PMAG Kenya
The prevalence of children with different disabilities in Kenya, and the status of their education and training are not yet fully known. The Kenya 1989 Census stated that about 251,000 people in Kenya had various types of disabilities. Of these, 46% were children. A new census with updated data would certainly indicate that this figure has considerably increased. There is also no demographic statistics to show what percentage of out of school children and street children are not going to school because of undiagnosed disabilities.
Against this background, Inclusion International has adopted a two-pronged approach:
informed advocacy at government and international levels through facts and information generated from the grassroots,
campaigning for the improvement of the role of government agencies in the provision of education, training, health care, etc. for the communities.
Inclusion International works in conjunction with the Commonwealth Secretariat to advance the disability dimension. Together we have held two roundtables on the issue, so far. The 1st roundtable was organised in March 2001 in order to mobilise the Kenyan government, the UN system and other key players. It focused on an Action Plan for the Migori Distric, one of Kenya's 70 districts, and explored elements needed to provide persons with intellectual disability, their families and other disabled people a decent life in this district. The 2nd roundtable brought together forty participants from the Office of the President, ministries, UN agencies and Foreign embassies as well as religious organisations, civil society, local administration and community members from Migori and Mathare. They all agreed upon a set of measures and activities to be undertaken, including sensitisation and mobilisation at different levels.
A key activity for PMAG Kenya is to promote Community Based Empowerment in the Migori District (Lower Suna Location). PMAG also supports the Mathare Special Training Centre (Mathare Division of Nairobi). It is expected that these programmes will provide practical solutions that set a successful example of the kinds of empowerment activities required in order to facilitate and strengthen the inclusion of people with mental disabilities in community life ie: a model of good practice for the paradigm shift that should occur in the community and in society at large, which could eventually be adapted in other districts.
PMAG conducted a survey in 1999 to identify children with disabilities in the Migori District. As a follow up, counselling was provided to children, parents and teachers in the community and a small home (dormitory) is now being constructed, to cater for children coming from far distances. This should be completed by the end of 2003. A dispensary is, also, under construction. Through support of the PMAG, the project has supported the development of training and learning materials, workshops for the empowerment of parents, and vocational training for children and youth. The main beneficiaries are disabled children, adolescents and young adults between 6 and 24 years of age.
A collaborative research project will be undertaken in 2003 by Dr. Rappe-Sundqvist, a consultant from Sweden, and Ms Menya, PMAG Co-ordinator. The survey will seek to determine the situation of children with intellectual disabilities and other disabilities, since the 1999 survey of PMAG was conducted.
The recent pledge by the Kenyan government to provide free primary education for all, including children with special needs, is cause for more positive thinking and strategic action
PMAG KENYA 1998 – 2006
By Martha Menya and Victor Wahlström
The Parent Mobilization Action Group, PMAG, is a project of the Kenya Association for the Intellectually Handicapped, KAIH, and Inclusion International, II, starting in July 1998.
Since its inception, PMAG has faced serious issues, in regard to persons with disabilities generally and children with an intellectual disability and their families in particular. Children are often considered a burden to their parents. Stigma is widely spread. More than half of the population is poor. A culture of corruption prevails.
In order to alleviate some of these problems, PMAG has focused on policy and legislative issues, in liaison with the Kenya government and NGOs. In addition, it has been active in providing an example of good practice, at local level, through the local branch of KAIH at Lower Suna Location, Migori District.
The New Kibaki Government taking office in the beginning of 2003, after 24 years of poor governance in the previous regime, gave hope for the future. An Anti-Corruption Commission was established. Free primary education was initiated. A Disability Bill was passed.
After two years the government is accused of grand corruption. The Head of the Anti-Corruption Commission has resigned. The donors are threatening to freeze their funding.
In addition to PMAGs efforts to promote human rights and empower the parents, Inclusion International has launched a Study of processes creating sustainable change in Kenya, Romania, India and South Africa. The study started in 2003 and will be completed within a three year time frame.
In Kenya, twenty examples have been selected demonstrating that disabled people do not have to be excluded.
PMAG ROMANIA
PMAG Romania is a joint venture between Inclusion International, Inclusion Romania and Foundation Pentru Voi focused on people with intellectual disabilities. It started in 1998 and will finish in 2006. A steering group is appointed; a co-ordinator is employed and paid for by Inclusion International; sponsors are The Swedish National Organisation of Persons with Intellectual Disabilities, the Swedish Organisations of Disabled Persons International Aid Association and private donors.
Inclusion started, in co-operation with Inclusion Europe a new project: “Capacity building through Adult Education and Training with national organisations in Central and Eastern Europe ” – project financed by MDAP of Open Society Institute. The project is aimed to build capacities of disability organisations in 4 countries: Bulgaria, Romania, Estonia and Czech Republic. In the frame of the project we will organize 20 two-days training seminars, between 2004 and 2007.
Inclusion Romania is a founding member and Board member of the newly established National Disability Council Romania – NDCR. NDCR is the result of the hard negotiations between different national organisations, which hardly coordinated their points of view, with the help of an EDF project.
Also in the Action Plan of PMAG the project for 2006 are:
• Lobby for promoting the National Strategy
• Monitoring the implementation of the National Action Plan and the implementation of the National Strategy for Child Protection
• Organising the conference „Community living for persons with intellectual disabilities” on February 2004 focused on community living for persons with intellectual disabilities and their families as a goal and on public-private partnership as a condition for success.
• Organising 2 training seminars and disseminating materials at the Resource Centre at Pentru Voi.
• Implementing together with Inclusion Europe the MDAP financed project: “ Capacity Building through Adult Education and Training with national organisations in Central and Eastern Europe ”
• Cooperation with Inclusion Europe and MDAP in implementing “Included in Society. European Research Initiative on De-institutionalisation of Disabled People “
• Implementing the SHIA financed project: “Study of Processes and Method Used to Achieve Improved Life Conditions for Persons with Disabilities in India, Kenya, Romania and South Africa”
• Cooperation in implementing ” Disability Rights Promotion International, DRPI” project
• Editing the “Inclusion information newsletter” on a regular basis
• Developing the Activity Centre in Bucharest as a pilot project
• Supporting the member organisations with technical and legal assistance, know how, information and representation
• Increasing the number of member organisation –The goal: by the end of 2006 Inclusion will have a member in each county (40).
• Liaise with Amnesty International and the Centre of legal resouces on monitoring the human rights for persons with disability from Romania
• Participating to Inclusion Europe and Inclusion International conferences and meetings
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