Lessons learned

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On September 26, 2019, the Liliane Foundation held the STEP symposium to discuss lessons learned and discuss potential upscaling of the approach. The full recording of the symposium can be accessed here!

On September 26, 2019, the Liliane Foundation held the STEP symposium to discuss lessons learned and discuss potential upscaling of the approach.

On April 3 & 4, 2019, the STEP debriefing workshop was held in Kampala, Uganda. During these two days, both internal and external stakeholders of the STEP project were invited to discuss the lessons learned thus far as well as the pilot's round-off. Here are the key insights from these discussions.

Guiding question: What is the added value of STEP as an approach within CBR, aiming to address the complex needs of caregivers and the child living with CP?

“In case of an emergency on a plane, first put on your oxygen mask before helping others”

  • Improving the quality of life and care for children with disabilities cannot be done without helping caregivers first.
  • Being in the field is different, it exposes you to reality, whereby the everyday challenges of caregivers become apparent. You learn to smell, see, and listen to the little, yet essential, things.
  • LF staff can only grasp a percentage of this while on field visits but those who are there full time are the fieldworkers. It is hard, long, and tiring work. Yet there is very little job security and poor protection of fieldworkers’ positions and salaries amongst organisations.
  • The fieldworker is crucial to the rehabilitation process. (S)He is close to the families, knows them, and what affects them, best.

Why STEP?

  • STEP is an approach, consisting of an intervention package for fieldworkers, to be used within the ICF- and CBR context.
    • The ICF framework depicts the diversity of factors that influence disability and how individuals may experience their disability.
    • Responding to a worldwide trend that is the predominance of disabilities caused by neurological conditions.
    • CBR programmes have difficulty addressing the challenges experienced by caregivers and children with severe neurological disabilities.
    • CBR workers lack skills; they know how to identify and refer, but need more support in regards to knowledge and tools to support families directly.
  • STEP research component
    • Building evidence from the ground.

What and how?

  • STEP is a pilot, it is about learning.
    • Intervention package consisting of support tools (RehApp CP, log book, online platform, WhatsApp groups), training, as well as coaching of fieldworkers.
  • Providing support tools is necessary, however, improving the capacity of fieldworkers is also key.
  • STEP is about “giving energy back to the families, as well as considering the difficulties the caregivers may be experiencing”. We no longer want to work as we did before, admitting children in centres and believing caregivers are not cooperating if they miss a review or do not carry on with the rehabilitation plan when back at home.

 

Mercy Killing: Uganda’s Hidden Infanticide

 

Christine Kirungi’s (UNAC director) speech[1] – Sharing experiences of caregivers coping with a child with CP

  • Projects have come up to devote interventions for these children. You bring wheelchairs, bring them to hospitals but you are forgetting the caregivers. You are forgetting that those children are like branches on a tree. If the tree is not taken care of, then we are doing nothing. Because if that mother dies, who is going to take care of that child? Projects end. But the mother will have to continue staying with that child.
  • What can we do? Most of you are CBR workers. And I would like to say that with STEP we are breaking the barriers of institutionalisation. People with disabilities should be taken to institutions for rehab… Come on, rehabilitate me within my community. Rehabilitate that child within his or her family. Don’t isolate them. And that is STEP. That is trying to see that really the child is being loved, is being rehabilitated within their family. That STEP can kill two birds with one stone. It looks at the child with the disability but also the caregiver.
  • What can we do that others have failed to do? But together here we can come up with an intervention that is unique, that can address the community. When UNAC members go to the communities, they say this is the STEP pilot, working with families. And I’m very happy to say that we have got testimonies from parents. Parents have said UNAC I thank you, through STEP, our marriage has been saved.
  • We have been brainstorming and came up with the idea of a day care. Why? We look at those families living in poverty. What can we do since they can’t go outside and work? If this child who is severely affected is taken in the morning to the day care the mother will have time to go to work and meet some of the needs of that child. We look at exposure of the child. They cannot do anything, they are helpless inside them. You don’t know the smile, the joy you can create in these children when you just put them outside, to experience a new environment, to experience the world.

 

Guiding question: What are the challenges and possible strategies to embed STEP in future programming?

Why would (S)POs respond to issues raised by caregivers? How could this be organised? What is needed to implement this?

Fieldworkers

  • Why? To create awareness, break down barriers in participation and encourage acceptance.
  • How? By encouraging collective parenting in families; training and encouraging PSG formation; using IEC materials (e.g. flyers, posters, banners, brochures) and media (e.g. radio, TV).
  • What? Human resources (fieldworkers, health professionals, community leaders, children with disabilities, caregivers, donors, organisation managers, religious leaders); skills and knowledge; financial resources and time.

POs

  • Why? To improve the quality of life of children with disabilities, increase participation of caregivers in the rehabilitations process and have an impact with our CBR programmes.
  • How? Involve caregivers in the overall planning of the child’s rehabilitation; build on capacities of CBR workers; collaborate with different stakeholders to meet a variety of needs and tackle other pressing issues (e.g. poverty); form PSGs; evaluate to identify and bridge the existing gap in services and create awareness on disability inclusion in the community.
  • What? Skills and passionate fieldworkers; success ambassadors to share their story; tools and resourceful people; partnerships with various stakeholders including government agencies and national bodies; using media; and funds.

SPOs

  • Why? To create awareness about disabilities and CP in communities, to reduce stigma and discrimination, to increase understanding and realisation of what can still be achieved and to move from centre-based to community-based.
  • How? Empower caregivers through social, economic and livelihood programmes; give fieldworkers more time to go to the communities and equip them, as well as SPO staff, with knowledge and skills; build capacity of staff in health centres, with a shift from passive stretching to meaningful activities included in family- and community life; invest more in L&A and make use of ambassadors, DPOs and PSGs to do so; share learnings from STEP with pilot countries and develop a curriculum for shared usage in these countries.
  • What? Commitment from all stakeholders; supportive leadership; strong systems and structures in place at the grassroots level; human and financial resources.

 

Guiding question: What is the added value of STEP as an approach within CBR, aiming to address the complex needs of caregivers and the child living with CP?

STEP in practice – Sharing experiences of STEP-fieldworkers

Impact on (S)PO level

  • Increased involvement in top leadership and management
  • More discussion about CP
  • Guidelines for supervision of those going to the field, knowing what to look for
  • Greater financial and human accountability

Impact on fieldworker level

  • Better communication; common language and understanding of CP
  • Boundaries between SPOs and POs are no longer there
  • STEP is gradually integrated when developing plans
  • New zeal, fieldworkers are eager to go to the field to see children with CP
  • Results now measurable because of the system in place
  • Fieldworkers no longer impose their plans or have their own agenda; rather, they reach an agreement with the caregivers

Impact on caregiver level

  • Rekindled hope, appreciation of small improvements and reduced frustration
  • Decreased neglect and demystification (more understanding, knowledge and skills)
  • Improved marital relationships with more support from the husband/father

Impact on child level

  • Children want to go to school
  • Increased and improved motor activity, leading to more participation and better quality of life overall

Impact on community level

  • Demystification and stigma reduction, better understanding of CP and rights of children with disabilities more generally
  • Willingness to contribute and to be involved
  • New friendships, acceptance, and support

What has worked well

  • The simplicity of approach and tools
  • Measurable outcomes
  • Quality of life is better understood
  • Increased community involvement, support and participation; children with CP are becoming more visible and accepted in the communities
  • More time for the child and less costly for families; fieldworkers come to them instead of families going to centres
  • Coaching caregivers; confidence and knowledge has increased
  • Registration of PSG and IGA groups at the district level to get support from other organisations
  • Teamwork (caregivers, fieldworkers, teachers, organisations, management, etc.)

What did not work well/challenges

  • Struggles related to some tools (e.g. ICF within the log book, RehApp CP); still require more simplification and/or improvements
  • Goal setting and realistic timelines are still challenging
  • Economic empowerment of families
  • Resistance; difficulty of letting go of old approaches (e.g. stretching)
  • Involving discouraged parents and over expectations of some caregivers
  • Rejection and stigma from the broader family and/or community
  • Unavailability of assistive devices
  • Shortage of fieldworkers in comparison to the number of children identified; as well as time required for home visits in combination with other work in the organisation
  • Crisis in certain regions leading to loss of children in programmes (e.g. Cameroon)

Recommendations

  • Contextualisation and use of simple language
  • Ensuring the approach is well integrated within CBR
  • Simplification or improvements of certain tools (e.g. online platform, RehApp CP)
  • Training people with a passion; screening and selecting the right people is crucial. Optimism, friendliness, humbleness, ability to listen and empathise, open-mindedness and a problem-solving attitude, as well as a commitment to the field, are essential
  • Mainstreaming STEP into the broader child empowerment programme requires additional staff and additional budget; (STEP-trained) CBR fieldworkers need fairer salaries
  • No age limit or restriction to CP; make it about severe neurological disorders and/or complex needs
  • Twinning methodology; have people exchange ideas and go see one another in their respective countries to see how it is done there
  • Involve (S)PO management so they have a better grasp of what the approach entails
  • Regular trainings or refreshers provided to fieldworkers, (S)PO staff, and other health providers (e.g. on how to do field visits – additional burden for families vs. meaningful visit with added-value for the family)
  • Invest in fathers as well: “I’m a father, not only a husband”

Concluding messages

  • Start with the caregivers: “children with disabilities are like branches on a tree; for them to grow you must take care of the tree”
  • PSGs and day care models are promising and need to be further examined to relieve caregivers
  • Continuous investment in awareness raising is needed
  • Little successes are important; outcomes in coping and quality of life are significant, and sensitive indicators need to be further developed
  • Clear commitment expressed by all four SPOs; an initiative from all four to meet in September/October 2019 to prepare for a joint strategy on how to integrate STEP in the 2020 Annual Plan has been communicated
  • More time, including refresher trainings and coaching are needed; a training of trainer methodology needs to be developed
  • Multi-stakeholder partnerships are needed to ensure sustainability as well as the success of the STEP approach
  • Achievements and successes need to be documented to fuel public awareness campaigns, provide evidence on the promise of the approach, and rally other actors to the cause

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Guiding question: How to collaborate with various stakeholders?

Sam Masaba Wekesa (Commissioner for Disability and Elderly Affairs) – The management of CP in Uganda: Roles and collaborative efforts of the various relevant stakeholders

  • Uganda has a policy and legal framework in place for persons with disabilities. Implementation of this framework, however, is lacking.
  • The ministry has the mandate to coordinate and mentor all players of disabilities, in order to have a unified service system.
    • Currently, there are competing services and staff, providing different instructions.
    • Quality standards also need to be implemented, in order to avoid the closure of children’s day-cares, for example.
    • Structures to support the management of CP need to be created.
  • Poverty and disability are interwoven; which one causes the other? Where there is disability, there is poverty. And where there is poverty, there is disability.
  • Families, DPOs and CSOs all need to be given roles and responsibilities within the rehabilitation process.
  • Current challenges include the increase in complex disabilities (is this due to higher incidence or more reporting?); the lack of capacity building and facilitation in this sector (more recognition of fieldwork is necessary; it is not only about transferring skills and/or budget, but about training the right people and ensuring these are encouraged to stay in the field); and donors allocate more importance to targets than quality of the work.
  • Patience is key, progress takes time.

 

Rosemary Mutumba’s (Angel’s Centre director) speech – Psychosocial aspects and isolation: The role of PSGs and day-care facilities[2]

  •  On the day Abryl was born, there were several complications: heart problem, hearing loss, throat issues, and many other complications, but these did not ring a bell and indicate the life we would be living today. I thought these would be worked upon, that it would be fine, and that I would be like any other mother. On that day it reminded me of the difference and the change between being a mother and a special needs mother. While the journey has been challenging, I must tell you, it’s a journey worth sharing.
  • In Africa, it takes a family or a village to raise a child. But this time around, when you have a child with a disability, it takes an individual to stand, to raise your own child.
  • I cut off all social activities. Most of my friends who knew Rose as an outgoing woman… I changed. I was in my own world, trying to understand who am I at this point and what type of a parent am I going to be to see that my son would receive the quality of life he needs. I also learned a lot from my quiet years, I learned lots of skills. When you talk about medicine, you may think I went to medical school. When you talk about therapy and everything, you may think I’m either an occupational therapist or a physiotherapist. But my background is a social worker.
  • If I can talk about the schools I have been to, to the books I have read, to people who have told me… no one has taught me better lessons than my son Abryl. He has taught me virtues of love which other universities in the world will never teach you. Loving someone unconditionally, loving someone irrespective of the ability of what someone can offer.
  • You know, you learn so many virtues because you are the mother in the picture, you are the greatest teacher he needs, you are the confidant he has, the comfort and you are the person to show him a bright future, the connection to the world.
  • Finishing strong means learning how to live with a child with a disability. Coping with a disability is a day to day, gradual journey. Someone will not tell you that you wake up one day and tomorrow you are over it. I am a member of many PSG in the US and Belgium. But even when I go to these parents, they cry the same tears I cry. Because emotional pain is universal. It doesn’t matter where you are. Even abroad where governments are giving them social support, they get an education, they have everything. But the emotional pain, getting something you never expected, puts you down.
  • Most of the mothers tell me, Rose you speak to us, something changes. There is comfort. I tell them I have been there. Experience is the greatest teacher.

 

Guiding question: What are the challenges and possible strategies to embed STEP in future programming?

Discussing Parent Support Group structures

  • What is needed from organisations to develop strong PSGs?
    • Strategic plan that embraces PSG structures
    • Parent mobilisation and PSG sensitisation
    • Linking PSGs to other organisational structures and governmental bodies
    • Fieldworker support; skilled human resource to facilitate PSG formation
    • Exchange visits for working PSGs
    • Strong CBR network in place to coordinate activities of PSGs, including capacity building in various areas (e.g. IGAs, disability inclusive development)
  • Concrete actions to support these structures
    • Mapping of existing PSG/community structures; identifying what already exists rather than working in isolation
    • Identifying the target area (e.g. district)
    • Networking and collaborating with other stakeholders and organisations, as well as mobilising and sensitising them
    • Mobilising resources (e.g. human, financial, etc.), although there are plenty of examples where PSGs have formed themselves without any resources to begin with
    • Organising exchange visits (e.g. taking caregivers to see how it is done elsewhere)
    • Training and coaching of parents in PSG formation, group dynamics, as well as management, savings, and financial skills
    • Identification of venue (e.g. parent home, room in a school, church, day-care)

 

Guiding question: How to collaborate with various stakeholders?

Learning from other strategies and identifying key learnings to integrate in your organisation’s programming and policy development

 

The BISS approach – key learnings

  • Very important for caregivers to have an IGA in order to adequately provide for their children
  • Selection criteria are necessary to have a sustainable IGA; select people who have an interest in your IGA (in this case baking) or who may already have a related business (e.g. selling chapatti, samosas, etc.)
  • Start with something simple and build on it (e.g. phase 1, small loan suitable to make easy baked goods such as samosas, doughnuts; phase 2, bigger loan and training to make more complex baked products, which also sell for more money)
  • Offer hands-on practical training; teaching how to bake but also business skills to sell your baked goods
  • In addition to training, provide a loan in the form of equipment (e.g. don’t just teach how to fish but also provide a fishing rod)
  • Monitoring and follow-up is key to checking how people you have trained are doing

The LftW 12.4% approach – key learnings

  • Collaboration and networking between young people with disabilities and companies are key
  • People with disabilities can advocate for their rights; identify role models to sensitise organisations/companies as well as other people with disabilities
  • Identify youths with disabilities who have gone to school; internships are a good intermediary step in order to build youth confidence and to give them a first experience in working life. This also works to show companies that youth with disabilities have the ability to work
  • Map out potential companies that would be willing to hire or at least provide internships to people with disabilities
  • Match people’s abilities with existing employment opportunities

The NUDIPU approach – key learnings

  • Entry point: village-based saving group
  • Training members who are already involved in saving groups
  • Projects are owned and managed by members themselves
  • Savings group, funds are secured in a box: 60% is for people with disabilities, 25% is for caregivers and 15% for community members
    • The group is anonymous/confidential
    • The group must register within local authorities
    • The goal is not the accumulation of wealth but to use the fund

IGAs and ‘over empowerment’

How do we avoid over empowerment (turning children with disabilities into an economical advantage for caregivers, whereby (s)he becomes a means of getting income)?

  • It comes back to the fieldworkers. They set the agenda together with the family.
  • The goal needs to be clear from the beginning. The what and the how.
  • If you give an IGA, you should be able to see a direct benefit for the child (e.g. in terms of access to school, better health status, medicine provision, etc.).
  • M&E is crucial in ensuring the IGA is relevant

Way forward

  • All four countries have expressed a wish to continue with the STEP approach.
  • Embed in the broader programme and continue building the capacity of people on the ground. The four pilot countries can and should share their experiences and agree upon a curriculum for shared usage.
  • Aspects that need to be further addressed in light of upscaling:
    • Budgeting at the level of assistive device for Cameroon; workshops are not available there, therefore provision of these is difficult and costly.
    • Regular refresher courses to maintain the quality of the work.
    • Fieldworker exchange visits, to see how it is done in other regions/countries.
    • Economic empowerment of caregivers is not part of STEP yet it comes up over and over again (strong CBR network is therefore key here in order to refer to appropriate services or organisations with livelihood expertise).
  • Come up with standards for home visits to ensure these are meaningful for the child, the caregiver, and the fieldworker.
  • Fieldwork should be seen as time demanding; more field time needs to be given to fieldworkers but also better employment conditions.
  • STEP is an attempt to go back to the basics, the way work should be done. Let us not forget this and continue to value the small milestones.

 

“There is still much to improve and to learn, but the foundation is there” (Steven van Berlekom).

 

[1] For the full speech, please email lguignard@lilianefonds.nl

[2] For the full speech, please email lguignard@lilianefonds.nl

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