BestpracticeRCS
From RapsodyOnline
Introduction
The following document includes Best Practice Recommendations that EURORDIS and its Respite Care Network believe, Respite Care Services should respect when setting up or looking to improve their service. The guidelines have been created with the help of Caroline Hart, formerly of RehabCare Ireland and Katrine Fyhri, formerly of Frambu and Robert Hejdenberg, Agrenska. As a network member you have been invited to make comments and modifications directly. On the 28th of February all your comments were added to the document and a new version was created. This will be version 0 which will be distributed as widely as possible amongst EURORDIS’ Respite Care Services contacts. Any changes included from now will be added to the next version of the document. The goal is to continue enriching this document as new services join the network
What is respite care?
Respite care is provided on a short term basis for disabled people who normally live at home, so that their carers can have a break from care giving. One of the important purposes of respite is to give family members time and temporary relief from the stress they experience while providing extra care for a family member living with a rare disease. The respite care enables the caregivers to maintain the ability to continue the care giving. The second important purpose is to give the person living with the disease/disability a place to experience and perform recreational and meaningful activities away from their parents/other caregivers.
Respite Care Services can be offered in various ways, these are: Residential respite: the person living with the rare disease goes away to be looked after by someone else, a “respite care family”, for a while
Domiciliary care: some services offer a caregiver to come to the family’s home, and take over care giving duties for a while
Day care centre, nursing home, institution or respite care group home with assisted living facilities
Emergency respite services that gives access to services on short notice in the event of an unexpected emergency occurring
The best practice guidelines outlined below are aimed at service providers and families. Rather than be a definite model for respite care services, these principles aim to inform best practice standards in the development and on-going activities of services. They have been developed with the spectrum of different service that exist in mind.
General recommendations Users must always play a central role in shaping the service. They will often represent the greatest expertise, as there is little knowledge about the diagnosis among medical staff and professionals. Guidance of the professionals working in the services is of great importance. The caregivers are obvious collaborating partners in this connection, but in addition to them the respite care personnel should be offered qualified supervision and guidance from a qualified staff. This will decrease the burden and responsibility for the carers.
We recommend that you include the following when setting up your service:
That you apply to become a member of EURORDIS´ European Network of Rare Diseases Respite Care Services once you decide to create a service.
That you register your service with your local help line so that they can recommend your service to callers.
Other then the European Networks, we recommend that you take advantage of as many channels of communication as possible to ensure that members of the rare disease community know your service exists.
Raise awareness about the importance of respite Care services among decision makers and professionals (please see the European Communication on Rare Diseases and the EURORDIS fact sheets on Respite Care Services, February 2010).
The potentially positive health consequences of relieving strains and burdens for care givers should be subjected to an economic valuation, according to a cost/benefit approach
All diseases information that you include in your user database be recorded with the orphanet code.
Further, good respite care services should be both predictable and flexible (especially for the weakest and most ill of our patients). With predictability the patient and his/her family are able to plan their everyday life and have a sense of control of their own lives.
I Person / Family Centeredness
We recommend that you include the following as part of your services’ policy:
Each person and each family is unique. Services should be flexible and responsive to the individual needs of the client and their family.
Client and family centred principles for the development of the service, policies, programmes, facility design, and staff practices should always be taken into account. This will include consultation with clients and families in all aspects of development within the service.
II Personal identity and Social development policy We recommend that you include the following: To ensure respect for the dignity, rights and individuality of each client with particular regard to privacy and choice.
Services should ensure that an appropriate social balance is kept amongst the group. Preparation for adult life is also crucial, as part of the service offered
III Management, Recruitment, Staff Roles and Training policy Intent: To ensures stability, continuity, initiative, competence among staff and good communication with the home are important for the parents We recommend that you include the following: Adherence to an organisational recruitment policy
Mandatory training as set out by the service to be completed by all staff
The promotion of a culture of learning and development in the service
Staff ratios in line with national guidelines and /or ratios as advised by experts for specific diseases
Take advantage of local voluntary worker programmes in your area
Designing special training curriculla for staff and volunteers working for the respite service
IV Admission procedures We recommend that you include the following:
‘one to one’ interviews before taking on new patients. This should work both ways to ensure that the centre and the patient talk to each other.
Family respite care, mapping between groups. Assessments of whether they will be compatible.
Ensure that the new person fits easily into the larger group.
All necessary information about the client that relates to their care will be obtained before admission. This should include:
Personal information (name, sex, address) Who to contact in case of emergency Explanation of disease and any medication information Level of assistance required Need for technical equipment, aids, devices Allergies Diet For residential services, the provision of a welcoming environment for clients and families is essential.
A service contract in an accessible format that outlines the terms and conditions of a stay.
Accessible information about the service should be available for clients and families prior to the stay(this information should be provided for the rapsodyonline listing):
Aims of the service The needs the service caters for: If relevant, accommodation (bedrooms, bathrooms, layout of building) and living arrangements Transport arrangements Visiting arrangements (including discussion of expected contact between providers and parents or family) Personal belongings Costs Rights and responsibilities of client Risk assessment procedures Complaints procedures
V Individual Assessment The care received must be based on the clients own individual needs as assessed prior to attending the respite service. The client should only be accepted if the service feels it can adequately meet the needs of the client, as identified by the assessment process. Assessment should be carried out by trained professionals in liaison with client and families.
VI Administration
Ensure that all documentation is present and correct, and that each individual client record is stored / filed whilst adhering to Data Protection guidelines in reference to confidentiality. This will include the recording of incidents / events that will inform future management of cases.
Ensure quality follow up, problems occurred should be included in the evaluation.
VII Complaints An open environment that is conductive to suggestions, the raising of specific issues and complaints.
The provision of a formal complaints process that is clear and accessible.
An appropriate complaint follow up
VIII Evaluation
Respite services should have clear mission goals including performance indicators to enable the process of evaluation.
Regular monitoring of the success of service outcomes to take place.
Evaluation forms filled by beneficiaries will be performed periodically
Regular consultation with families about how to improve the quality of service;
Regular questionnaires to users
IX Rare Diseases and Health Care Needs
Staff expertise in specific rare diseases and the provision of specialised staff
Consideration of the combination of diseases that can be catered for in one service, if the service is residential. Preparatory information seeking will involve liaison with families, specialists and support organisations for specific diseases.
Provision of relevant equipment / technologies that are specific to the needs catered for in the service.
Provision for multiple disabilities and expertise to manage this.
Administration of medication – respect for independence in someone taking their own medication OR adherence to procedures for safe administration in line with professional guidelines
Diets – this may be specific to particular diseases where specialist advice must be sought.
X National Standards and Legal Obligations and the right to respite services
As of yet, there is no formalised right to respite – respite is not stated in the UN Declaration of the Rights of Persons with Disabilities (2006) nor is it explicitly mentioned in the Madrid Declaration (2002). However service providers should acknowledge rights based service provision as good practice and aspire towards this principle. EURORDIS and the European Network of Respite Care Services advocates for the right to respite for rare disease patients
XI Community Links Respite services should operate in the community and facilitate clients to be active members in the community as far as possible. Transport issues. Offer information on local transport, particularly information linked to accessibility.
XII Finance Ensure that your financial arrangements are in line with your countries policies and any national standards
Prepared by Shane Lynam EURORDIS
Reviewed by Rare Disease Respite Care Network Members. François Houÿez, Rapsody project manager and Health Policy officer EURORDIS
Validated by Yann Le Cam EURORDIS François Houÿez, EURORDIS Resources Members of the Network for Rare Disease Respite Services Frambu, Norway http://www.frambu.no/ Agrenska Sweden, http://www.agrenska.se/ Rehabcare Ireland, Ireland http://www.rehab.ie/care/index.aspx Romanian Prader Willi Association, Romania, http://www.apwromania.ro/index_en.php Rapsodyonline Respite Care Services Listing :http://www.rapsodyonline.eu/dev_rapsody/map/index/ Eurodis Factsheet on Respite Care Services, February 2010
Bibliography
Scottish Executive. National Care Standards: Short breaks and respite care services for adults. Scottish Executive RehabCare. Unpublished. Admission in Respite Care Guidelines Connecticut Department of Children and Families Mental Health Division. 2000. Practice Standards for Respite Care Programs. Respite Services Specialist Study Group Report (2006, confidential report) Merriman, B. & Canavan, J. 2007. Towards best practice in the provision of respite services for people with intellectual disabilities. HSE, Dublin www.familycenteredcare.org European Congress on Disability. 2002. Madrid Declaration South Carolina Department of Disabilities and Special Needs, 2001. Respite Standards
