A Patient and Family Advocate is a caring professional who provides on-going disease education, support and resources to people living with ALS (PALS), their loved ones and the community involved in caring for PALS. Advocacy may be provided in a variety of ways including provision of home visits, phone consultation, support group facilitation and at venues such as ALS educational meetings and Les Turner ALS Foundation special events.
Patient Advocates listen to questions, problems, or special needs and help PALS and family members prepare for changes that may occur with disease progression. Advocates are critical thinkers who offer assistance with problem solving by utilizing their own knowledge and referring complex concerns to the appropriate staff, allied health agency or community liaison for resolution. They foster collaboration and coordination of services between professional disciplines working to facilitate communication between patient, family members and health care teams.
All Patient and Family Advocates report to the Director of Patient Services and are considered part of the Les Turner ALS Home Team. All are expected to represent the Les Turner ALS Foundation in a professional manner when they are working or attending Les Turner events.
Duties and Responsibilities •Shadow other members of the home team on home visits during orientation period as determined by the Director of Patient Services
•Provide home/ nursing home visits, phone/ email support, participate in support groups and provide ALS education
•Self schedule and manage time spent on home visits, ALS in-services and in office oDocument weekly schedule and share w/ Director of Patient Services (DPS), the Lois Insolia ALS Clinic (LIALSC) team and home team members oDocument monthly time card to submit to the DPS within 1 week of month end oComplete monthly tracking sheets for home visits and community education within 1 week of month end oCommunicate critical patient needs to LIALSC nurses within 24 hours of home visit oDocument all home visits within 1 week and distribute via email to the DPS, LIALSC team and home team members •Attend monthly LTF Home Team meetings and assist DPS with grant reviews •Evaluate home environment for safety, adaptations and equipment needs at home visits •Educate regarding disability, Medicare, Medicaid, private insurance and other financial options •Guide access to care through state programs, caregiver services and explore additional means to maximize assistance •Assist with advance directives; including living wills, medical power of attorney and other end of life issues •Provide social service counsel and intervention to improve communication and assist in conflict resolution •Collaborate with home health agencies, hospices and other community organizations- making appropriate referrals when indicated •Conduct in-service education for home health agencies, hospices, case management groups, assisted living facilities, nursing facilities, employers, schools and other community organizations •Provide bereavement support •Annually attend and participate in LTF events as suggested by the Executive Director •Pursue continuing education, maintain professional licensure and malpractice insurance
•Registered nurse or licensed clinical social worker with active Illinois licensure and malpractice insurance. •Bachelor’s degree preferred from an accredited college with 5-10 years of experience in patient care, preferably with a neurology, respiratory, hospice, social work or case management background. •Be comfortable working with people and families affected by ALS. •Demonstrate strong analytical thinking, problem solving and communication skills (both written and oral) with a demonstrated attention to detail and strong self-management skills. •Proven ability to successfully handle multiple projects, meet critical deadlines and work independently, as well as part of a team. •Computer proficiency
•Must possess an ability to interact professionally with patients and families, medical professionals, potential donors, vendors, volunteers and board members. •Must have car and valid driver’s license. •Flexibility to attend evening and/or weekend meetings and/or events.
The mission of the Les Turner ALS Foundation
is to raise funds to:
• Advance scientific research into the causes, treatments and prevention of ALS
• Provide people living with ALS, their families and caregivers exceptional clinical care and support services
• Increase awareness and education of ALS