Specialised Social Services

Specialised Social Services are instrumental to the empowerment of people living with rare diseases and are essential to the improvement of their well-being and health. This section provides the list of services in Europe, as well as facts, case studies and guidelines for these services. Testimonies of both patients and volunteers can also be found below.

 

 

Therapeutic RecreationTherapeutic Recreation     Respite Care Services Respite Care Services     Respite Care ServicesAdapted Housing     Respite CareResource Centres

What are Specialised Social Services?

When referring to Specialised Social Services, it is important to remember the different types of services that have been identified at EU level.
The services can be listed as:
  • Therapeutic Recreation Programmes (TRP)
  • Respite Care Services (RCS)
  • Adapted Housing (AH)
  • Resource Centres (RC)
  • Other habilitation services supporting People Living With Rare Diseases (PLWRD) in their daily life or in their complementary therapeutic procedures, increasing autonomy and quality of life of PLWRD.
Each tab above is dedicated to a type of Specialised Social Service, including a definition of the service, the list of services, a factsheet and case studies or guidelines.


Why are they needed?

Specialised Social Services are instrumental to the empowerment of PLWRD and improvement of their well-being and health. For people living with a rare, chronic and debilitating disease, care should not be restricted to medical and paramedical aspects, but should also take into account social support, inclusion and psychological or educational development. Therapeutic Recreation, Respite Care, Adapted Housing Services and Resource Centres are essential in providing this vital support to PLWRD. The patient and volunteer testimonies available in each section recount the importance and the significant outcomes of these services for patients, families and society at large.
 

What is the role of EURORDIS with respect to Specialised Social Services?

Currently EURORDIS is involved in the European Committee of Experts for Rare Diseases (EUCERD) Joint Action Working for Rare Diseases (2012-2015), as leader of the work package dedicated to Specialised Social Services and Integration of Rare Diseases into Social Policies and Services.

Within the framework of this project, EURORDIS is responsible for mapping the services available in Europe and promoting awareness-raising activities for the purpose of highlighting the need for these services. EURORDIS will also address the issues concerning the training of the staff/volunteers working at these services.

For a complete insight into the need for Specialised Social Services and on the work developed under the EUCERD Joint Action, read EURORDIS Paper "Rare Diseases: addressing the need for SSS and integration into social policies".
 

 

Case Studies will be compiled after visiting different experienced and established services. The collection and sharing of Guidelines will be promoted via workshops and the exchange of information among services, authorities and other partners.

 

 

Page created: 18/09/2012
Page last updated: 28/10/2014
 
 

List of services

Learn more about  the Therapeutic Recreation Programmes indicated on the map: their activities, who can attend, how to contact the services and where they are located.

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Fact Sheet and Case Studies

Consult our Fact Sheet and Case Studies to learn more about Therapeutic Recreation Programmes and  well established TRP in Europe.

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Testimonials

Patients and volunteers share their experiences attending or participating in Therapeutic Recreation Services.

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What are the Therapeutic Recreation Programmes?

Therapeutic Recreation Programmes (TRP) are any organised recreation activity (summer camp, ad hoc trip) that give people living with rare diseases the possibility to take a break from focusing on their disease and treatment to concentrate on fun and leisure. TRP can also focus on different empowerment and disease/symptom management activities. There are three main formats of TRP:

  • 'Single illness' TRP: for people living with a specific condition, or their siblings;
  • ‘Mixed illness’ TRP: for people living with a variety of conditions and/or their siblings/spouses;
  • ‘Mainstream or integrated’ TRP: for people living with a variety of conditions, siblings/spouses, and people not affected by any illness.
     

Why are they needed?

Leisure and recreational activities help people living with rare diseases to gain self-confidence and feel empowered to deal with everyday challenges. Ultimately, people living with rare diseases and their close ones need time off. They need to spend time in an environment where they can stop thinking about their disease, and where they can meet, socialise and play with other people facing similar conditions. TRP allow patients with rare diseases and their families to meet these needs in a safe, friendly and adapted environment.
 
The study “Outcomes associated with participation in a therapeutic recreation camping programme for children from 15 European countries: Data from the Barretstown Studies” mentions that «benefits were noted in their [patients’] experience of physical symptoms, affect pertaining to physiological hyperarousal and quality of life in the short and longer term. Positive changes were also noted in relation to self-esteem as it pertains to global self-worth and physical attractiveness». The study concluded that «these findings clarify previous research and suggest that camping programmes have an important role to play as a complementary intervention in facilitating adjustment to chronic illness» (Kiernan, Gormley and MacLachlan, 2004).

The importance of TRP for siblings has also been reported. Siblings share common difficulties, including a lack of understanding and knowledge about their sibling's disorder, the feeling of being left out, and potential embarrassment over their sibling looking and behaving differently (McGarvey and Hart, 2009).

 

Page created: 05/03/2013
Page last updated: 02/04/2013
 
 

List of services

Learn more about the Respite Care Services indicated on the map: their activities, who can attend each service, how to contact the services, and where they are located.

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Fact Sheet and Case Studies

Consult our Fact Sheet and Case Studies to learn more about Respite Care Services and well established RCS across Europe.

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Testimonials

People living with a rare disease share their experiences attending Respite Care Services.

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What are Respite Care Programmes?

Respite care is provided, on a short term basis, for people living with rare diseases, so that their carers can have a short relief from care giving. Many of the people living with rare diseases involved might otherwise require permanent placement in a facility outside their home.

Respite Care Services (RCS) can be offered in various ways:

  • Residential respite: the person living with the rare disease goes away to an adapted centre to be looked after by someone else, a “respite care family”, for a while;
  • Domiciliary care: some services offer a caregiver who comes to the family home, and take over care giving duties for a while so that the regular carer can have a break from the daily routine of care giving;
  • Day care respite: day care centres, nursing homes, institutions or respite care group homes with assisted living facilities (no overnight facilities);
  • Emergency respite: services that give access to respite on a short notice in the event of an unexpected emergency.
     

 

Why are they needed?

Respite care enables the caregivers to maintain the ability to continue care giving. The benefits to carers described in the literature also fall into these two broad categories: stress reduction and self-esteem increase; and improved family functioning (Merriman and Canavan, 2007).

A second purpose of respite is to make it possible for people affected by a with rare condition to live according to their usual daily routine and to provide a place to experience and perform recreational and meaningful activities away from their parents/other caregivers. Benefits to service users mentioned in the literature are socialisation, and enjoyment of experiences outside the home (Merriman and Canavan, 2007).

Without respite, not only can families suffer economically and emotionally, caregivers themselves may face serious health and social risks as a result of stress and exhaustion associated with continuous care giving. Three fifths of family caregivers aged 19-64 surveyed recently by the Commonwealth Fund, a private foundation working with health care and related policies, reported fair or poor health, one or more chronic conditions, or a disability, compared with only one-third of non-caregivers.

The long term implications of providing respite care involve benefits for carers and people living with rare diseases. The families will become better carers because of the relief respite provides and due to the exchange of experience with respite care providers while people living with rare diseases will increase their life quality. Respite often prepares people affected by a rare disease to live more independently in the present but also as grown-ups. In this way, the quality of the overall care provided will improve.

Page created: 05/03/2013
Page last updated: 03/04/2013
 
 

List of services

Learn more about the Adapted Housing services indicated on the map: who can attend each service, how to contact the services and where they are located.

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Fact Sheet and Case Studies

Consult our Fact Sheet and Case Studies to learn more about Adapted Housing Services and well established AHS across Europe.

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Testimonials

People living with a rare disease share their experiences living in an adapted group home.

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What are Adapted Housing Services?

Adapted housing and related services represent a particular type of service, often associated with multiple disabilities. Sometimes called “therapeutic apartments”, these services allow people living with rare diseases to develop and enjoy some level of autonomy by living within the comfort of their own home, alone or with peers, under the supervision of supportive staff, rather than being placed in an institution.

Adapted housing might also include a specific local/regional grant awarded to the patient’s family in order to pay for any house adaptation work, to prevent families from having to move into other facilities, or in order to adjust regular buildings to certain specific needs (wheelchair, small size, hearing disabilities, autistic spectrum disorders, etc.).

Why are they needed?

Adapted Housing services make it possible for people affected by rare diseases to live as independently as possible, being monitored by supportive staff trained to provide assistance for any daily routine activities that cannot be performed independently.

People living with rare diseases can thus enjoy a high level of independence and autonomy,  while being integrated in a community with peers, and not jeopardising their safety or their clinical and therapeutic needs.

Page created: 05/03/2013
Page last updated: 02/04/2013
 
 

List of services

Learn more about the Resource Centres indicated on the map: their activities, who can attend, how to contact services, and where they are located.

read more...
 

Fact Sheet and Case Studies

Consult our Fact Sheet and Case Studies to learn more about Resource Centres and well established RC across Europe.

read more...
 

Testimonials

People living with a rare disease discuss the benefits they have experienced from using Resource Centre services.

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What are the Resource Centres?

Actions performed by Resource Centres are generally specifically targeted to people living with rare diseases, often in partnership or cooperation with Centres of Reference/Expertise or themselves being a Centre of Reference/ Expertise.

Resource Centre services include training courses, information and guidance services, and provision of information concerning social services, documentation and research. Daily support therapies, medical and psychological consultations are often also provided by these centres.

These services could fit into the description of the «one-stop shop style of service for rare disorders» referred to by the participants in the RehabCare Study “An investigation into the social support needs of families who experience rare disorders on the island of Ireland”, being able to provide «flexibility and person-centred approaches which fit the service around the individual’s specific needs» (McGarvey and Hart, 2009).
 

Why are they needed?

These centres commonly create a bridge between people living with rare diseases/families and all the stakeholders involved in patient care, such as medical services, rehabilitation and therapeutic services, social services and social support authorities, education professionals and other professionals directly working with people living with rare diseases.

On the social level, Resource Centres provide guidance and support to people living with rare dieases in accessing their rights, and offer social empowerment on different levels. Additionally, these centres provide training, guidance and information to different carers, including not only relatives but also social services providers and adapted education teachers. By serving all these groups, the Resource Centres have an essential role in the improvement of the global social care of people living with rare diseases.

Resource Centres are also essential in handling rare complex cases. These services can also coordinate with complex case managers located at other regional or national services, assuring proximity support to people living with rare diseases and their families. They can   also be considered complementary to medical services, helping to fulfil the multidisciplinary mission of Centres of Expertise, as suggested by the European Commission Communication on rare diseases: Europe's Challenges  and the Council Recommendation on an Action in the Field of Rare Diseases.

Page created: 05/03/2013
Page last updated: 02/04/2013
 
 
 
The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseases, Rare Diseases International is a EURORDIS initiativeRare Disease International Bringing together patients, families and experts to share experiences in a moderated multilanguage forum, RareConnect is a EURORDIS initiative RareConnect An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases