‘The Rehab Group is an independent not-for-profit organisation working for social and economic inclusion among people with disabilities and others who are marginalised,’ says its website. ‘Each year more than 60,000 people access training, employment, social care and commercial services in the Group’s network of some 200 centres across Ireland and the UK. Rehab’s role goes beyond providing services that enable its clients to make the most of their skills and talents in the workplace and the wider community.’ RehabCare is the health and social care division of the group which operates a wide variety of responsive health and social care programmes reaching into Irish communities. More than 2,600 people of all ages and from all walks of life use the services provided by RehabCare, which range from resource centre activities to care work delivered in people’s homes.
RehabCare has been providing respite care services to patients, including people living with rare diseases, since 1996. Respite care services are one of the services for rare disease patients covered by the Rare Disease Patient Solidarity Project (RAPSODY), led by Eurordis. RAPSODY aims at building a European network of respite care service providers for rare disease patients, with an online database of services accessible via Eurordis’ website. ‘Respite care is provided on a short term basis to medicalised patients under the age of 65 who normally live at home, so that their carers can have a break from care giving,’ says Shane Lynam, project coordinator for the Respite care services part of RAPSODY. RehabCare offers two types of respite care services, centre-based respite and home-based respite. Centre-based respite (also called residential respite). A person living with a disability is looked after in a homely and comfortable environment for a while, giving his/her family a break from full-time caring. These services were established by RehabCare in 2001. The patient is offered a wide range of activities, including social and leisure outings, physiotherapy, reflexology, and music therapy. The respite period is tailored to the individual needs of each patient. Services are disability specific and are adapted to the needs of children and adults. Home-based respite (also called domiciliary care): a caregiver comes to the family’s home and takes over care for a while so the care giver(s) can have some time off. These services, established by RehabCare in 1996, assist individuals to live as independently as possible in their own homes and within their local communities.
‘We are carrying out projects in several areas,’ says Caroline Hart, the RAPSODY partner contact person from RehabCare. ‘This includes a current study investigating the support needs of families affected by rare disorders. We are pleased to be partners of the RAPSODY project led by Eurordis, as it provides a European forum to network and contribute to making positive changes for people affected by rare diseases and their families. At RehabCare, we work in a spirit of partnership with organisations of people with disabilities, the voluntary sector, health boards, government departments and state agencies.’ The initial European network of respite care services established by the RAPSODY project includes 4 centres in France, Ireland, Norway and Sweden. Eurordis is hoping that many more will join the network and take this great opportunity to learn from each other, while offering a wide array of services to European rare disease patients.