I am glad to introduce myself before this delegation; My name is James Ssenkandwa the Chief Executive Officer (CEO) of Cerebral Palsy and Autism Renaissance Organisation (CPARO).  First of all, I thank his Excellency the CEO of Sub- Sahara Advisory Panel (SSAP) for agreeing to come and share with us this precious Moment amidst his tight schedules.

I also thank the staff and the top management of CPARO that have attended this wonderful occasion.

Dear guest of honour, on behalf of CPARO I would like to appreciate the physical and Material support that you render towards our organisation’s undertakings. We are really so grateful for our partnership with SSAP that has yielded fruits of happiness to People with Disabilities especially Children (disabled households).

Dear distinguished guest, I would like to take this opportunity to give you the background of Cerebral Palsy and Autism Renaissance Organisation (CPARO). It was founded by People with Disabilities (PWDs), caregivers and parents of Children with Disabilities in 2017 and it was officially registered as a non-governmental organisation in 2019 under Registration Number INDR145232247NB.

CPARO is providing multitudinous support services to People with Disabilities especially children and other vulnerable/ marginalized groups. It is composed of staff and volunteers that include people with lived experience of Disability and/or Vulnerability as well as a team of experts in human rights; Accountancy, Project Management, Medical, specialist Education, Social Entrepreneurship, Therapeutics, Counselling and guidance, Dietarian science among others.

Our major objective is to advocate for the rights and delivery of essential services to people with Disabilities (PWDs/CWDs).

CPARO Patron, Reverend Father Dr. Gerald Wamala the Parish Priest of Mulajje in Kasana- Luweero Diocese has played a key role towards elevating the Organization in attaining her goals and/or objectives.

We praise the Almighty God for his mercy that Mr. Deo Sekandi, the former CEO of CPARO himself is a person with Cerebral Palsy; for the great work he is doing to serve the disabled persons, he won the Queen’s Young Leaders’ Award at Buckingham Palace and he was also recognized by former US President, Mr. Barack Obama.  Mr. Deo Sekandi has won several Awards for the services that he is rendering to persons with Disabilities. He recently completed a PhD from Cambridge University UK.

In pursuance of our cause, various interventions are being made in different      sectors that include; Raising awareness, Education, Health, Economic empowerment, welfare to mention but a few. In furtherance pursuance of our goal, we established CPARO MEDICAL CENTRE which helps in addressing and catering for medical challenges faced by People with Disabilities (PWDs/CWDs) and their families.

CPARO is a non-denominational and non-ethnic entity.

Governance

Cerebral Palsy and Autism Organisation (CPARO) has a well-established Organisational structure (Organogram). At the helm of the Organization there is a Board of Directors composed of nine members that include; Parents, People with Disabilities (PWDs) and caregivers. The Board is the supreme Authority of the Organisation. The General Assembly is held once a year to elect various committees and pass policies.

The Executive Committee runs the secretariat which is based at CPARO offices and implements activities.

 Vision

“People with Disabilities live an improved life especially those with Cerebral Palsy and Autism in Uganda”.

Mission

“Promoting education, living standards, welfare, and livelihood of people with Disabilities”

Core values And Slogan

Core Values:

– Teamwork

– Cooperation

– Honest and integrity

– Transparency

– Respect and love for one another

– Unity

– Time management

Slogan:

“Equality and Dignity for all”

Objectives

CPARO was formed in order to: 

1. Promote the livelihoods of people living with disabilities, especially children (CWDs) in the Ugandan Community through education, social welfare, healthcare, water, sanitation and hygiene (WASH) and nutrition.
2. Enforce behavioral changes amongst People with Disabilities (PWDs) especially those with Cerebral Palsy and Autism.
3. Raise awareness and sensitization to the public about the needs, potential and ability of People with Disabilities.
4. Advocate for the rights of People with Disabilities.
5. Provide psycho-social and wraparound support to People with Disabilities (PWDs) and their parents/guardians/caretaker.
6. Build network and collaboration with government and non-governmental organizations so as to enable People with Disabilities (PWDs/CWDs) participate and benefit from existing programs.
7. Facilitate inter-community linkages with Community-Based Organizations (CBOs) at the grass root and international levels to support the needs of People with Disabilities (PWDs/CWDs).
8. To take part in the fight against Based Gender violence (BVGs).
9. To promote culture.
10. To fight against environmental degradation

While CPARO handles disability issues, it uses a three-dimension approach to mention; Philosophical, Ideological and Strategic procedures.

• Philosophy, we always focus on understanding People with Disabilities (PWDs/CWDs) and their challenges/motivations.
• Ideology, we mainly deal with ideas about the management of People with Disabilities (PWD/CWDs).
• Strategy deals with the methods we use to implement whatever plans are designed to serve People with Disabilities (PWDs/CWDs).

       Challenges

Amidst our service delivery to People with Disabilities (PWD/CWDs) we have faced a number of challenges among which include:

• People with Disabilities face different health/comorbidity situations that need expensive treatment (Medication).
• Inclusion of People with Disability in developmental programs (CWDs).
• Negative attitudes about disability (Cultural beliefs /Witchcraft) in the communities.
• Absolute Poverty in disabled households.
• Lack of Special Needs Educational (SNE) materials.
• Lack of specialist teachers
• Discrimination of People with Disabilities (PWDs/CWDs)
• Lack of therapeutics and health equipment
• There is a need for modifying existing structures to ease the accessibility of disabled persons to important facilities like; Schools, Medical, restaurants among others.
• Lack of Education materials for Children with Special Needs (CWSNs)
• Lack of Assistive/Adaptive devices to support mobility and Activities of Daily Living (ADLs).
• Lack of Community awareness on the rights of CWDs.
• Currently we are renting and yet our services need permanent residence. Hence there is a need for buying land and construction.
• We lack a hard body vehicle that can be used for multipurpose transport.
• Inadequate food in disabled households that has resulted to poor balanced diet.

In spite of the numerous problems over the 7 years, CPARO is now standing and matching forward with the following progress and achievements:

     Achievements

• CPARO’s partnership with the Sub-Sahara Advisory Panel (SSAP) has made a remarkable achievement in furthering our objectives that include; Education, Health, Mobility appliances and Adaptive devices, Basic needs to disabled households. In this regard through you we would like to thank all the UK agencies that have joined hands with you to support our Organisational work.  

 Social Achievements

• Due to continuous sensitization and awareness campaigns made by CPARO entire staff about disability matters there is increased active participation and social interaction of PWDs/CWDs creating learning opportunities and choices that has built confidence in CWDs.
• Increased Education exclusiveness.
• Community Based Rehabilitation (CBR) support has improved emotional wellbeing of PWDs/CWDs through companionship and a regular listening ear to the target population.
• Through meetings of Children with Disabilities (CWDs) and their parents conducted by CPARO field staff the quality of Life of the target group in their homes has been improved. It has also helped CWDs to avoid deterioration in psychological and physical health. This has been accompanied by routine Physio therapies and training on Activities of Daily Living (ADLs) which are attributed to independent living skills of CWDs.
• CPARO through collaborations with other organisations/agencies like CSOs, NGOs, SHGs and CBOs still continue to extend health services nearer to the disabled households. Hence improved well-being of PWDs/CWDs.
• Empowerment of mothers and caregivers of Children with disabilities; Some strategies are made by CPARO to teach disabled households to involve themselves in Income Generating Activities (IGAs) in order to earn a living. Many mothers have concentrated on vegetable farming like spinach, cabbage, onions and tomatoes; zero grazing farming for animals (goats, cows and sheep), rabbit keeping, and poultry among others.
• Community members have started picking love for CWDs inclusion because of the constant awareness campaigns being carried out by CPARO. Hence, creating a positive attitude towards PWDs.
• Formation of Parents, School, Community Activist Action Group

CPARO Outreach/CBR workers together with the Occupational Therapist and the Project Coordinator have formed four different groups of parents, school administrators/staff and community stakeholders who act as volunteers in their communities to achieve common aims/goals.

• Bespoke packages of wraparound support

CPARO has provided bespoke packages of care that have improved the wellbeing of children with disabilities (CWDs).

• Visits:

PWDs/CWDs have been frequently monitored and assessed through frequent home and school visits by our Outreach/CBR workers, Project Coordinator and Occupational Therapist in order to improve their wellbeing and livelihood.

CPARO Incomes

The Turnover- 2023 is £ 26,870.76(UGX.129,000,607.2)

Key grants are:

–  Queen’s Commonwealth Trust UK £4,000 (2020)

–  British & Foreign School Society UK £31,837.74 (2022-2024)

–  House of Zakat & Waqf Uganda £14.185.98 (2022-2024)

–  Kayunga Semaka Association Limited £4,882.69 (2022-2023)

The Sub-Sahara Advisory Panel UK partnership has made a remarkable milestone for CPARO in achieving its objectives.

Goal

“Our target is building an independent, integrated and self-sustainability to People with Disabilities (PWDs) by using the available Organisational strategic plan”.

We therefore call upon for any support to enable us to fulfil our goal.

 Dear honourable guest, through you we would like to thank the British Foreign School Society (BFSS) for the grant towards our “EDUCATION FOR ALL CHILDREN PROJECT”. The grant enabled 140 Children with Disabilities (CWDs) who didn’t have hope of getting education to attend school.

 Dear Sir, CPARO would like to Passover her heartfelt appreciation to Mummy Carol Adams and her team for the generosity spirit of standing with us in developing important ideas that are helpful to people with disabilities majorly children (PWDs/CWDs) in Uganda.

I conclude by thanking the Almighty God for protecting our guest (Mr. Fadhili Maghiya) from all his way to Uganda and we pray for God’s blessings through the journeys of our work.

I thank everyone who has sacrificed his/her time to attend this important occasion.

Presented by:

James Ssenkandwa
CPARO CEO