Careers

Title:                     Development Manager

Reports to:         Director of Development

Location:             Hybrid: Three days per week in NYC office; two days work-from-home

Status:                  Non-exempt, full-time.

Salary:                  At the Manager level, the annual salary range for this position is

                                $52K – $57k, depending on experience.

Position Description:

The Development Manager is an integral member of HDSA’s Development team, based in New York City office and reporting to the Director of Development. The position serves as a critical liaison for the national fundraising team to support HDSA’s corporate, foundation and individual giving programs. Additionally, the Development Manager provides vital customer service to the organization’s donors to help steward their passion for investing in HDSA’s mission.

Key Responsibilities:

• Work closely with Direct of Development and Assistant Directors of Corporate & Foundation Giving and Individual Giving to support revenue generation.
• Coordinate material development, promotion and ticketing for national fundraising events, including Freeze-HD and the annual VIP reception.
• Provide logistical support for all national giving opportunities – including direct mail, giving days, and monthly giving, as well as corporate and foundation giving.
• Support coordination of HDSA’s database/fundraising platform, including helping to maintain donor profiles, run giving reports, and troubleshoot user challenges.
• Manage organization’s workplace giving programs, including coordination of platforms and coding of donations (i.e. Cyber grants, Fidelity Charitable, etc.)
• Coordinate with Marketing & Communications to draft and distribute approved e-blasts to promote national fundraising activities.
• Provide ongoing customer service for HDSA’s donors.
• Maintain national fundraising calendar to support development, communication, and mission outcomes.
• Develop a personal commitment and understanding of Huntington’s disease and those who have it, and be able to articulate the programs of HDSA that need support.

Qualifications:

The ideal candidate will be an eager and organized people-person with two years’ experience providing administrative support in a fundraising or sales environment.  Deep appreciation for a volunteer driven patient advocacy organization a must!

• Bachelor’s degree from an accredited four-year college or university required.
• Minimum of three years supporting a multi-member team. Experience in a fundraising or sales environment strongly preferred.
• Demonstrated ability to multi-task effectively with exceptional organizational and communication skills. Understanding of volunteer-led organizations.
• Must possess a high level of independence in accomplishing the responsibilities of the position and meet deadlines with flexibility, attention to detail, and good humor.
• Mastery of Microsoft Office suite, a strong understanding of database functionality, such as fundraising/CRM software, and an understanding of Canva or similar design software.
• Proactive self-starter with the ability to work well independently and with cross-functional teams.
• Organized with the ability to prioritize and plan effectively.
• Strong attention to detail.
• Ability to maintain a high level of social, organizational and professional standards in job-related activities.
• Consistently apply the society’s organizational values of HD Families First, Honesty & Integrity Always, Respect, and Collaboration in everything we do.

HDSA offers a competitive salary and benefits, as well as a terrific team with which to work.  HDSA is an equal-opportunity employer.

Please e-mail resume & cover letter to jobs@hdsa.org.

Title:                       HDSA Missouri Chapter Social Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $32 per hour

Hours offered are:  40 hours per month

*Applications without a cover letter will not be considered*

Position 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 hired by the Huntington’s Disease Society of America (HDSA) Washington Chapter (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 opportunities for in-person support groups, in-services, 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.

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
• 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 Chief Mission Officer and the Manager, Youth & Community Services

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in 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 (Apricot) 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 through Zoom 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 core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Chief Mission Officer and the Manager, Youth & 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 insurances
• Staying current on HD research and opportunities to participate
• Understanding family dynamics that care 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 attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

Please e-mail resume & cover letter to jmarsolek@hdsa.org

Title:                       HDSA Central Ohio Chapter Social Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $32 per hour

Hours offered are:  40 hours per month

*Applications without a cover letter will not be considered*

Position 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 hired by the Huntington’s Disease Society of America (HDSA) Washington Chapter (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 opportunities for in-person support groups, in-services, 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.

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
• 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 Chief Mission Officer and the Manager, Youth & Community Services

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in 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 (Apricot) 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 through Zoom 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 core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Chief Mission Officer and the Manager, Youth & 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 insurances
• Staying current on HD research and opportunities to participate
• Understanding family dynamics that care 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 attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

Please e-mail resume & cover letter to jmarsolek@hdsa.org

Title:                       HDSA Nevada Regional Social Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $30 per hour

Hours offered are:  20 hours per month

*Applications without a cover letter will not be considered*

Position 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 hired by the Huntington’s Disease Society of America (HDSA) Washington Chapter (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 opportunities for in-person support groups, in-services, 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.

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
• 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 Chief Mission Officer and the Manager, Youth & Community Services

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in 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 (Apricot) 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 through Zoom 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 core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Chief Mission Officer and the Manager, Youth & 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 insurances
• Staying current on HD research and opportunities to participate
• Understanding family dynamics that care 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 attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

Please e-mail resume & cover letter to jmarsolek@hdsa.org

Title:                       HDSA Oregon Regional Social Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $30 per hour

Hours offered are:  20 hours per month

*Applications without a cover letter will not be considered*

Position 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 hired by the Huntington’s Disease Society of America (HDSA) Washington Chapter (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 opportunities for in-person support groups, in-services, 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.

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
• 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 Chief Mission Officer and the Manager, Youth & Community Services

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in 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 (Apricot) 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 through Zoom 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 core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Chief Mission Officer and the Manager, Youth & 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 insurances
• Staying current on HD research and opportunities to participate
• Understanding family dynamics that care 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 attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

Please e-mail resume & cover letter to jmarsolek@hdsa.org

Title:                       HDSA San Francisco Bay Area Social Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $40 per hour

Hours offered are:  30 hours per month

*Applications without a cover letter will not be considered*

Position 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 hired by the Huntington’s Disease Society of America (HDSA) Washington Chapter (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 opportunities for in-person support groups, in-services, 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.

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
• 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 Chief Mission Officer and the Manager, Youth & Community Services

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in 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 (Apricot) 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 through Zoom 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 core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Chief Mission Officer and the Manager, Youth & 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 insurances
• Staying current on HD research and opportunities to participate
• Understanding family dynamics that care 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 attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

Please e-mail resume & cover letter to jmarsolek@hdsa.org

Title:                       HDSA Utah Chapter Social Worker

Reports to:           Associate Director, Community Services

Rate offered is:  $35 per hour

Hours offered are:  20 hours per month

*Applications without a cover letter will not be considered*

Position 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 hired by the Huntington’s Disease Society of America (HDSA) Washington Chapter (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 opportunities for in-person support groups, in-services, 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.

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
• 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 Chief Mission Officer and the Manager, Youth & Community Services

Qualifications:

An MSW from an accredited institution is required, along with valid social work licensure in 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 (Apricot) 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 through Zoom 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 core competencies to improve their knowledge of HD to assist in their practice in their first 6 months of hire. The Chief Mission Officer and the Manager, Youth & 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 insurances
• Staying current on HD research and opportunities to participate
• Understanding family dynamics that care 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 attend the many sessions at Convention.

Additional details are available upon request and questions are welcome.

Please e-mail resume & cover letter to jmarsolek@hdsa.org