How CSOs support families raising children with serious illnesses

How CSOs support families raising children with serious illnesses




How to move from targeted to all-inclusive support and taking help for families to the next level.


On 25 October, a conference involving charitable foundations was held in Moscow to discuss targeted and all-inclusive support for families. One of the sessions focused on providing help to families raising children with serious illnesses.


Transitioning to all-inclusive support


Last year, the Kind Heart charity discussed the transition from targeted to all-inclusive support for those in their care and its desire to deal with social and psychological problems as well as medical ones. This resulted in the launch of its Helping Hand programme, said Polina Likhacheva, the charity’s family support coordinator.


The programme works on two levels. On the first level, the charity receives a request from a family and looks at what benefits the family currently enjoys and what it can access for free. If the charity cannot provide targeted help, the family will be referred to other relevant foundations, including regional ones or to social services.


On the second level, a case approach is taken where necessary. For example, a family can receive legal support, be offered a course of psychological counselling or have an independent medical assessment. “The benefits of such an approach are systemic solutions to problems and a more efficient use of a charity’s resources. However, most families who come for targeted support are often not used to dealing with certain issues themselves such as actively engaging with lawyers”, said Likhacheva.


Collaboration between doctors and social services


Having to deal with a serious diagnosis is always stressful and leads to difficult life situations for the whole family, said Anna Karpushkina, head of the charity support programme “Alpha-Endo” for children with endocrine disorders. Social problems such as low household income in families that include single mothers, or where there are several children, can lead to much worse health outcomes despite the best efforts of doctors.


Anna explained how, as part of their research, the programme team had contacted doctors at two Moscow hospitals to which patients with diabetes had been admitted to see if they could ask the families about their current social problems. In so doing, they were able to identify a large number of families experiencing difficult life situations.


“We passed information on these families to expert social workers and introduced post-discharge medical follow-up support as part of our programme. This has resulted in 44% of families having an enhanced sense of well-being, being able to follow their doctor’s advice better, able to bring their illness under control and to achieve sustained clinical outcomes from their treatment”, said Karpushkina.


The role of CSOs as a mediator between an employer and a disabled employee


In 2016, the Downside Up Foundation launched a project on vocational guidance and the employment of mentally disabled trainees. This consisted of vocational guidance groups, social workshops, company internships with support from the charity’s experts, training and advisory sessions.


It is said that work plays a positive role in medical rehabilitation. However, it is not easy for people with mental disabilities to find work – what they need is an intermediary. Many companies do not understand what people with mental disabilities are really like and so are unsure what sort of work they can offer them.


“Our first thought is always to try and make our work systemic – not to target support but to create an environment for working with families that include people with disabilities and with CSOs, to share experience of employment programmes, as well as working with potential employers who are considering taking on a disabled person for an internship”, said Natalya Usoltseva, the Foundation’s vocational guidance and employment officer.






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