Description

This part-time social worker will assist local individuals with Huntington’s disease (HD), providing families and community professionals with information, resources and assistance. The social worker will run area support groups and serve as a liaison with the HDSA Center of Excellence in Pittsburgh. The social worker hired by the Huntington’s Disease Society of America (HDSA) Pennsylvania (Chapter/Region) works for HDSA, the national non-profit organization dedicated to improving the lives of those affected by HD. HDSA social workers offer support to people living with HD, provide referrals to local resources and services, help to raise community awareness about HD, promote advocacy and encourage research participation.

Position is primarily remote (phone, virtual), but there will be required on-site support for in-person support groups, in-services, clinic work, and educational events. This will be determined in conversation with HDSA.

The position is to assist families and other professionals to find and provide appropriate referrals to services for people living with HD. Case management is not a primary function of the HSDA Chapter/Regional Social Worker but may be necessary in some situations. The social worker should be familiar with crisis services available in the community for callers needing crisis mental health or medical services.

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in the Chapter/Region catchment area (LCSW preferred). Experience with neurologic disease, hospice and/or long-term care facilities is highly preferred. Ability to work independently and be a self-starter are key qualities to a successful candidate.

Reporting and technology information:

All HDSA Chapter/Regional Social Workers are required to utilize software made available by HDSA to track services provided, time spent, and resources identified. The software is HIPAA compliant and identifying information about individuals and families served will not and cannot be reported by the national office. HDSA Chapter/Regional Social Workers will be issued a phone number with voicemail and texting capabilities to act as their work phone. HDSA Chapter/Regional Social Workers are expected to utilize this service on their own devices through their mobile phone carrier provider.

Professional support and education:

HDSA Chapter/Regional Social Workers will work on the following competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Associate Director, Community Services, will provide support, education, and guidance to new social workers in this process. 

HD core competencies include:

Being able to discuss key aspects of the disease, "What is HD?"
Explaining the importance of multidisciplinary evaluations and care when living with HD (including the role of professionals: neurologist, movement disorder neurologist, psychiatrist, psychologist, and ancillary services)
Understanding and being conversant about medications for psychiatric and movement symptoms
Discussing genetic testing for HD
Discussing advanced medical directives
Providing education on conservatorship/guardianship, power of attorney
Understanding state, federal and private insurance
Staying current on HD research and opportunities to participate
Understanding family dynamics that care is unique to living with an inherited disease
Discussing and providing guidance on long term care needs and placement resources
HDSA Chapter/Regional Social Workers are connected to a nationwide network of other HDSA Social Workers who work with people living with HD and who provide peer support and consults. HDSA Chapter/Regional Social Workers are required (and supported by HDSA Chapter/Region budgeted funds) to attend the annual Professional Training Day held at the HDSA Annual Convention each June. This Professional Training Day offers continuing education units and the opportunity to network with other HDSA Social Workers, as well as attending the many sessions at Convention.

Requirements

The HDSA Chapter/Regional Social Worker key responsibilities include:

Manage a part-time helpline (both phone and email) for residents of the HDSA Chapter/Region catchment area impacted by HD
Run a monthly support group for individuals in the Chapter/Region catchment area impacted by Huntington's disease (additional details to be discussed with HDSA and HDSA Chapter/Region leadership)
Monitor monthly peer led support groups and provide guidance to group leaders in the Chapter/Region catchment area, if applicable
Partner with the teams at HD specific multidisciplinary care programs at the HDSA Center of Excellence in the Chapter/Region catchment area to assist in case coordination and care, if applicable [this includes on-site attendance one day a month]
Partner with HDSA Chapter/Region leadership to plan, execute and promote HDSA Community Education programming
Create and maintain a resource guide to answer questions and provide referrals on relevant issues important to the community in the Chapter/Region catchment area
Interact with local professionals (home health agencies, long-term care facilities, local MDs and clinics, law enforcement) in the Chapter/Region catchment area to educate and inform so that new avenues for services are made available to local families
Interact with HDSA National Office staff, including the Associate Director, Community Services