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The following document is a working paper towards a Best Practice Recommendations document that EURORDIS and the TRP network believe any TRP (Therapeutic Recreation Service) should respect when setting up or looking to improve their service. The guidelines have been created with the help of Terry Dignan, former director of Barretstown Summer Camp and reviewed by Envol, France and Bator Tabor, Hungary. This draft will be available online and the network members will be invited to make comments and modifications directly. The text will then be edited to reflect these comments. The final document will be distributed as widely as possible amongst EURORDIS’ TRP contacts

Therapeutic Recreation Programme( a working definition)

The Network recognises any formally or informally organised recreation activity (summer camp, ad hoc trip) which has been set up with the needs of children or young adults with rare diseases in mind. There are 3 major formats that TRPS may follow. First, there are ‘single illness’ TRPs that cater for children with a specific condition, or for siblings of children with a particular condition. Second, there are ‘mixed illness’ TRPs that include children with a variety of chronic conditions, or siblings of children with different conditions. Third, there are ‘mainstream or integrated’ programmes that involve children with chronic conditions, siblings of children with chronic conditions, and children not affected by illnesss. TRPs tend to be residential, with some services conducting 1 session per year, and others conducting sessions on a year round basis. TRP sessions are relatively short in duration, typically lasting between 7 and 14 days. However, the extremes of TRP length can range from 2 days to 3 months. The scope of individual TRPs varies in a number of respects. While programmes often provide recreational activities, the range of recreational activities offered differs, being influenced, for example, by factors such as the TRP’s geographic location, financial considerations, and the age range of participants. However, common activities include arts and crafts, canoeing, adventure, camping and horse-riding). Some TRPs, in addition to activities, include formal education and support sessions for children that provide them with information about illness and treatment procedures, and give them the opportunity to talk about their experience of illness, or in the case of siblings, their brother’s or sister’s illness. However, even during TRPs with no such formal education or support sessions, it has been found that informal exchanges of information between children regarding illness and treatment, and discussions about their experiences with illness occur.

This definition allows for a broad spectrum of different types of services, however what follows are based on the most organised and professional type setup. There is nonetheless plenty of recommendations that can be applied to the most basic type of ad hoc weekend away.

The objectives of these guidelines are to achieve

a high quality, emotionally, psychologically, physically and medically safe experience for children

a TRP comprised of inclusive, accessible and child/family centred activities

a TRP that employs staff with appropriate qualifications relative to their respective positions.

TRPS with fully trained staff members, well resourced, supervised and supported

an organisation that ensures oversight, governance, adherence and compliance with all applicable legal, governmental and other obligations or requirements.

a TRP that is known amongst the rare disease patient community across Europe.

I.General Recommendations Intent: To ensure that the TRP service is known in the rare disease community and that it is aware of general Network recommendations

We recommend

That you request to be included in the Rapsodyonline listing of TRP services with description and geolocalisation

Other then the European Network, we recommend that you take advantage of as many channels of communication as possible to ensure that members of the rare disease community are aware of your service

That you register your service with your local help line.

All diseases information that you include in your user database be recorded with the orphanet code.

II.Child Protection

Intent: To ensure that the TRP meets its obligation to provide for the physical, emotional and psychological safety of each child supported by a comprehensive set of policies and procedures and supplemented by professional / management support.

The European Network of TRPs recommends that all TRPs include the following in their child protection policy:

A written policy regarding confidentiality and information sharing that is distributed to and discussed with all staff.

A written procedure that is distributed to staff regarding the disclosure of physical, sexual or emotional abuse or neglect.

A system of behavior management in place that has been reviewed and approved by a licensed child mental health professional

The TRP should be fully licensed and approved by all relevant government agencies, e.g. health, labor, child care.

III. Child Care and Supervision

Intent: To ensure that the supervision of the children is informed by standard practices and protocols designed to provide the highest possible level of safety and well-being of each child attending the TRP. To ensure that any and all decisions regarding care and supervision are made in the best interest of that specific child.

The child’s guardian should send on a medical report at least two weeks before his stay.

Children should be provided with an information packet prior to attending the TRP.

An orientation programme should be provided for participants upon arrival

A formal registration/welcome process should be put in place for children and families upon arrival

A system of behavior management should be put in place that has been reviewed and approved by a licensed child mental health professional.

A policy should be put in place to ensure a 2:1 child to staff ratio, including all adults with childcare responsibilities

A policy that all activities are inclusive, age appropriate and suited to the stage of development of each child.

A behavior management policy distributed and discussed with all staff, including a policy on the restraint of a child.

Children should be permitted and encouraged to get 8 hours of sleep at night and provided with opportunities during the day for rest, relative to their wants and needs.

All menus should be reviewed and approved by a registered dietician.

All menus should be reviewed for special dietary requirements.

A policy and procedure for informing parents and guardians regarding situations that potentially impact the emotional or physical well being of the child should be put in place.

A policy in place for the steps taken if a participant needs to be sent home for behavioral reasons

The TRP should apply a system of regular observation of staff by supervisors to ensure staff members are adhering to the standards

IV. Psychosocial and Medical Support Intent: To ensure the organisation has the training and support needed to provide psychosocial support to children and staff.

We recommed that you include the following:

A licensed/accredited mental health professional (psychiatrist, psychologist, social worker, child life specialist, counselor, recreation therapist) on site or available for children and TRP staff

A licensed/accredited mental health professional (psychiatrist, psychologist, social worker, child life specialist, counselor, recreation therapist) available in an advisory capacity, e.g., framing policy, screening applicants

Make contact with all relevant medical facilities in the area.

Identify any local specialised medical expertise linked to the rare disease for which your service provides activities.

Ensure that rare disease mentioned in any of your promotional material can be accommodated at your TRP.

Indicate whether you require your patients to be on or off medication to attend.

V. Identifying and Hiring Staff (Staff = Paid and Volunteer) Intent: In order to ensure the highest level of care and best possible experience for the children it is imperative that the organisation identify and recruit highly competent staff members and volunteers.

A minimum of 3 references (written or telephone), current resume, and application should be required for all applicants

All applicants for year round and seasonal employment should be interviewed by at least 2 trained and experienced staff members.

We recommend a non-discrimination hiring policy and a recruitment policy that encourages diversity.

Staff and volunteers should be given a clear job description prior to accepting the position.

All staff members are required to sign a contract or agreement that defines the rights and entitlements of the staff member and the expectations of their role at the TRP

All staff members should receive a staff or volunteer manual which contains information about the organisation and their respective position.

An employee handbook of full time staff members should be provided.

All staff should be required to complete a criminal record check before arrival at the TRP.

VI. Training and Management of Staff (Staff = Paid and Volunteer) Intent: In order to ensure the highest level of care and best possible experience for our children it is imperative that the organisation train and provide ongoing management, support and professional development opportunities for all staff members.

We recommend the following:

TRP orientation training should be required for all staff

The organisation’s pre-TRP orientation include all mandatory ACA( the American Camp Association), local/national governmental training components and documentation of attendance.

Guests should be required to be accompanied by a staff member when visiting the TRP

All staff members should be required to review and sign-off that they have read and understood the organisation’s staff manual

Staff training can include sessions and/or materials on the following: Diversity and cultural sensitivity and awareness Psycho-social issues faced by participants Appropriate care for children with special needs Inclusiveness/Adapting Activities Discussion about post TRP communication/relationships with participants Discussion of the mission, values and philosophy of the organisation Conflict resolution processes and practices Medical orientation, both procedural and diagnosis specific Appropriate staff-to-staff and staff-to-participant interaction and activities Drug, alcohol, and tobacco policy TRP Communication Working with Volunteers Risk Management Emergency plans and Procedures

Paid staff get a verbal check-in during each session with their immediate supervisor.

All paid staff get an exit interview conducted by a senior manager at the close of the summer

The medical staff provide medical care for volunteers

All paid staff should receive at least one written evaluations during the course of the TRP

A process should be put in place to compile, prioritize and respond to the formal written feedback given by staff.

In addition to their scheduled time off during a TRP day, staff are required to take a minimum of 7 hours off during a session.

The organisation should meet all state and national employment and labor laws and employee’s rights

Paid staff members should be provided with opportunities and resources to give feedback, both formally (written) and informally (sit down) about their managers and about their professional issues and concerns.

A performance management system in place to monitor, evaluate and address performance issues for staff and volunteers.

Volunteers provided with the opportunity during their session to give and receive feedback

A director or designee on-site at all times during each session

VII. TRP Activities

Intent: To ensure the TRP is providing safe, suitable and diversified activity programmes for children with special needs. To create a balanced programme between passive and active, general and specialized, individual and group, creative and adventure based activities. To provide activities that promote appropriate social, cultural, educational and recreational opportunities for children. To create opportunities for children to engage in social and recreational activities with peers who have faced or are facing a rare disease. To provide a TRP experience that is sensitive to the individualized needs of each child based on their age and their illness.

All programme areas should be equipped and resourced to meet local, national, and international requirements.

Programme equipment should be regularly checked, maintained in good repair and stored in a manner to safeguard effectiveness.

The TRP should have written goals that identify specific outcomes for each activity.

All activities should be universally accessible to children and staff.

The TRP should offer multiple activities that reinforce the TRP’s goals and provide children with the opportunity to experience progression, challenge and success

VIII. Risk Management and TRP Emergency Policies and Procedures Intent: To promote standards of health and safety within the organisation which will lead to the avoidance or reduction of risks so far as is reasonably practicable to the health, safety and welfare of staff and children, and to ensure the best methods of compliance with health and safety, and associated legislation are achieved.

We recommend the following:

a procedure in place to report potential hazards and eliminate such hazards

a process in place for reporting accidents, incidents, and near misses

The TRP has an identification system in place at all times during the session for all staff, volunteers, participants and visitors

Policies and procedures should be in place to address the following emergencies

Evacuation Severe Weather Power Outage Computer / Database Recovery Loss of Water Supply Transport Emergencies Chemical Spills Death during session Tornado Hurricane Flood

A crisis team trained to address all emergencies

A system of communication in place from persons at the scene of an incident to TRP administrative and medical personal or community services as appropriate.

The TRP will notify their local fire, police, ambulance and hospital partners of dates of operation well before opening day.

Emergency phone numbers posted and up to date at all phones on TRP.

IX. TRP Site and Facilities

Intent: To provide a secure, universally accessible and child friendly environment designed to be conducive to fulfilling the goals and mission of the organisation.

We recommend the following

All areas of TRP designed or adapted to reflect best practices in universal accessibility for adults and children.

Daily site checks and inspections completed on all residential, programme, and common areas at the TRP.

A security system, e.g. gates, alarms, protocols, in place

Natural Resources management, protection and preservation

The facility’s staff members required to undergo regular professional development and training.

The organisation has maintenance and inspection reports available

A system to promote interdepartmental communication

A component of seasonal staff training dedicated to site and facilities

A schedule for cleaning, laundry, clean linens, and ordering supplies.

An on-site transportation plan to ensure the safety of staff and children.

Sources Prepared by Shane Lynam EURORDIS Terry Dignan, Brarretstown Ireland

Reveiwed by Raphael Rossello Envol Laurence Albert Envol

Validated by François Houÿez, Health Policy officer EURORDIS Yann Le Cam, CEO, EURORDIS

Resources Barretstown, Ireland Envol, France Bator Tabor, Hungary Hole in the wall gang: Over the Wall Fondazione Dynamo Rapsodyonline(online listing of TRPs for Rares Diseases) EURORDIS factsheet on TRPs(February 2010)

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