Resource Centre
The British Columbia Huntington’s Disease Resource Centre (HDRC) assists families and professionals with the many different needs and concerns encountered while dealing with Huntington’s Disease (HD). This service is funded through the Huntington Society of Canada (HSC) www.huntingtonsociety.ca and funds from the efforts of the BC Chapter.
What the HSC Offers
The HSC Family Services Program provides support to individuals, families, and professionals as they face the progressive course of Huntington Disease (HD). We also support caregivers and those living at-risk. The Family Services program strives to maximize the quality of life and to assist with meeting urgent needs.
Services are provided through:
1.) Director of Family Services – manages the program across Canada;
2.) Resource Centre Directors – full or part-time permanent staff that provide a range of services within large geographic regions that include highly populated areas;
3.) Family Services Workers – contract staff that provide priority services of the program within specific geographical areas. The Family Services Team works in partnership with local HD Clinics and Genetics Clinics to enhance service delivery. The Family Services program includes:
- Direct support services
- Education and support
- Local community development
- Support to HSC’s national advocacy efforts
Direct Support Services – available to anyone who is affected by Huntington Disease
- persons with HD
- persons at-risk
- persons who are gene-positive
- caregivers and family members
- community members, friends, neighbours
Information and Education – Provided about the nature and progression of HD and care strategies
Short Term Counselling – Counselling is available to address emotional and practical adjustments to the changes one may experiece while living with HD
Resource Counselling and Referral – Information is provided about community resources available to help meet specific individual needs
Individual Advocacy – Support is available to work with service providers and individuals to help ensure access to necessary services
Mutual Support – Provide opportunities for individuals with HD and family members to connect with others i.e. support groups and therapeutic retreats
Education and Support to Health, Social Service and Community Workers
Education and support is available to health and social service workers involved in the care of an HD family member.
- Staff at hospitals, mental health centres, long-term care facilities;
- Home care staff, counsellors, physicians and other health and social service workers;
- Community support groups or agencies;
- Community workers such as lawyers, police, staff involved in the justice system.
Education and support to health, social service and community workers includes:
- Information and education;
- Individual consultation;
- Links to other professionals.
Community Development
Community development activities include:
- Foster an awareness and understanding of Huntington Disease;
- Liaise with other professionals and organizations to improve the services;
- Collaborate with other service providers and government to expand existing services;
- Develop new services.
National Advocacy
- The Family Services team support HSC’s participation in activities that focus on systemic change to enhance the social, political, and environmental conditions that contribute to the well-being of individuals with HD and their families.
Therapeutic Retreat
1) general information
2) eligibility criteria
3) FAQ?
4) sample schedule of events
5) pictures
