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MS Navigator Program

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The National MS Society MS Navigator Program provides people affected by MS with the information, resources and support required to address the challenges of multiple sclerosis. The information below provides a thorough description of MS Navigator focus areas and how we can be an important partner for you and the patients under your care.
In this article

Possible MS

Discuss general information on diagnostic process, provide appropriate referrals to medical professionals, and emotional support resources.  Encourage follow up once diagnosed with multiple sclerosis or one of the following related diseases: Acute Disseminated Encephalomyelitis (ADEM), Balo’s Disease, HTLV-I Associated Myelopathy (HAM),  Neuromyelitis Optica (NMO -Devic’s Disease), Schilder's Disease or Transverse Myelitis.

Newly Diagnosed

Connection with the Society, answer questions, address and assess needs, provide emotional support, send appropriate information, discuss programs and services.
  • Assessment of current needs and emotional status with recent MS diagnosis includes:
    • Discuss family, friends and other sources of emotional support
    • Discuss impact of diagnosis on family, including children, and connect to appropriate resources
    • Assess and advise on employment and health insurance status; review disclosure options and planning for the future
    • Conduct two question depression screening tool; provide mental health resources if questions answered affirmatively.
    • Connect to information on disease-modifying therapies (DMTs); specific symptoms; and Society programs and services appropriate for individual’s current needs

New to Society

Connection with the Society, answer questions, address and assess needs, provide emotional support, send appropriate information, discuss programs, services, and engagement.  
  • Assessment of current needs and emotional status with disease progression:
    • Discuss family and other sources of emotional support
    • Discuss impact of disease progression on family, including children, and connect to appropriate resources
    • Assess and advise on employment and health insurance status; review disclosure options and planning for the future
    • Review and connect to MS-related information, Society programs and services appropriate for individual’s current needs
  • Provide information regarding engagement opportunities and connect to  Walk MS, Bike MS, MuckFest MS and general activism.

Comprehensive Support

  • When individuals are overwhelmed with financial, emotional, physical and other MS-related challenges and thus unable to navigate resources and options independently, the MS Navigator will offer goal oriented support and connection to services and resources, and will work with the individual or loved one toward finding a sustainable solution in meeting basic living requirements for housing, food, and access to healthcare through connecting with community and social service agencies.
    • The individual is screened for eligibility for state and local programs; provided phone-based assistance with completing applications; and provide guidance in understanding forms and other necessary paperwork to access entitlements.
    • MS Navigators follow up where needed to confirm whether individuals received entitlements and continue to advocate on their behalf as the situation requires.
  • Those individuals who are unable to independently or with assistance work with the MS Navigator via telephone or email will be connected with the Edward M. Dowd Personal Advocate Program for contracted case management services on a goal oriented, time specific basis.
  • MS Navigators effectively leverage other nonprofit, nationwide and community organizations to meet patients’ financial challenges in accessing durable medical equipment (DME); payment for rent, mortgage and utilities; respite and home health care; transportation; accessibility modifications to homes or automobiles such as ramps and hand controls; and other goods and services that are impacted from living with MS. The Society’s own financial assistance resources will be utilized in conjunction with other leveraged resources to work with the individual towards finding sustainable solutions. Financial assistance is not provided independently of connections with other services and resources in order to achieve a long-term solution.
  • Where appropriate and given permission by the patient, coordination of services will occur with the health care provider, family and other involved community agencies and referral sources.
  • Provide guidance in what to look for in housing solutions through Society and other resources for home-based care, assisted living, and skilled nursing facilities which may include connecting with a HUD Housing Counselor.
  • Recognize when individuals are exhibiting cognitive issues and utilize compensatory strategies, to promote increased follow through. When appropriate, provide referrals to neuropsychologists, counselors, and educational information around strategies to cope with cognitive changes which includes brochures on Managing Cognitive Problems, MS and the Mind, and other related publications.

Crisis Intervention

Although not a 24/7 “Crisis” agency, MS Navigators are trained and equipped to actively identify and take immediate action with individuals who present with suicide or homicide ideation; domestic violence, abuse and neglect; or self-harm indications. Through consultation with the Society’s crisis team, the MS Navigator will employ assessment and risk techniques to determine an immediate response and recommendations for long term plan of action and referrals.
  • Contact police, APS/CPS, healthcare providers and other appropriate professionals as necessary to the situation.
  • Follow up occurs with the individual to establish a plan of action that will work towards finding a sustainable solution for ongoing safety and well-being.
  • If an immediate crisis exists in the health care provider’s office, please contact 911, National Crisis Suicide Hotline (1-800-273-TALK (8255) or National Domestic Violence Hotline (1-800-799-SAFE (7233).

Employment, Benefits, and Health Insurance

Health Insurance: MS Navigators with knowledge and expertise in employment, benefit and health insurance resources provide the individual with assistance in finding and paying for health insurance and health care. The type and level of this support includes:

Commercial/Private Health Insurers:
  • Provide individualized evaluation of types of health insurance coverage options they may qualify for including, but not limited to, coverage for young adults, spousal coverage, or government programs like Medicare or Medicaid.  Individual evaluation includes assessment of income level, annual health care needs, and program eligibility.
  • Guidance and information about things to consider when choosing plans like formulary and provider networks.  The MS Navigator does not conduct marketplace plan searches but rather guides patients on how to conduct a successful search.
  • Provide information about insurance; subsidies and cost sharing; rights and protections including but not limited to protections against pre-existing condition denials; lifetime and yearly limits, out of pocket maximum, appeals rights and information.  The MS Navigator does not walk patients through an appeals process, but guides them utilizing the tools and resources available to get to a successful outcome.
  • Provide information and referrals on regulations and regulatory agencies.
  • Provide information and resources to help with cost of care and coverage.
  • Provide options and information for care without insurance.
  • Provide information and resources for medical debt (or to avoid medical debt)
 
Government/Public insurers:
  • Provide Medicare plan searches for open enrollment, special enrollments, and new to Medicare.
  • Provide information and resources for Medicare therapy denials (specific to Improvement Standard and Therapy Caps).
  • Provide information about appeal process.  The MS Navigator does not walk persons through an appeals process, but guides them utilizing the tools and resources available to get to a successful outcome.
  • Provide assessment and information about financial programs to help with cost of coverage and care.
  • Provide general information about Medicaid eligibility and coverage.
  • Provide information on Medicaid Spend Down programs.
  • Provide information and veteran specific referrals.
** The Society offers an appeal letter toolkit with sample letters to make it easier for providers to assist with appeals, prior authorizations, etc.
 
Benefits: Detailed guidance and resources regarding private disability benefits and Social Security Benefits. 
  • SSDI (Social Security Disability Income)
  • SSI (Social Security Income)
  • STD/LTD (Short-term/ Long-term Disability)   **The MS Navigator does not assist with initial application or appeals but will refer to SSDI or ERISA attorneys and guides patients utilizing the tools and resources available to get to a successful outcome.
  • Information re: state mandated disability.
  • General information about work incentives.
 
** The Society offers a Private Disability Guidebook and Social Security Disability guidebooks for professionals which include sample letters for provider use
 
Employment: Assessment of disclosure decisions, accommodation negotiation and requests, guidance and information on federal legal protections in the workplace, particularly Americans with Disabilities Act (ADA) and Family Medical Leave Act (FMLA), assistance locating state employment-related information and resources, and in depth employment resource guidance.
 
  • Pros & cons of disclosure in the workplace.    
  • Requesting/negotiating accommodations.    
  • Information about federal legal protections in the workplace, particularly ADA & FMLA.  
  • Assistance locating state employment-related information and resources (e.g. state anti-discrimination laws, state-FMLA laws, state departments of labor, etc.). 
  • In depth resource guidance.
    • Interviewing with a disability  
    • Addressing performance concerns/managing symptoms in the career change/transition 
    • Returning to work; work readiness  

Financial Planning

Discussion and referrals to local and national programs including Financial Education Partners (FEP) - a national, pro bono service provided via partnership with the Society and Financial Service Professionals.

Resources & Support

Connection to an extensive variety of programs, services, resources and connection opportunities for people living with and affected by MS, including family members, caregivers and other members of their support systems. These resources can be accessed in person in individual’s communities, online, by phone and by mail.

Caregiver/ Support and Engagement

Connecting with family members, friends, caregivers and care partners to programs and services that offer and provide emotional support, resources and literature.
  • Assessment of self-care, validation of feelings.
  • Discuss and asses social and emotional support.
  • Referrals to targeted programs and applicable resources.
  • Connections to peer to peer support resources by phone and online.
  • Connections to programs for children with a parent with MS.

Children with MS

Connect children diagnosed with MS to a nationwide program for children and teens and their families.
  • Discuss opportunities for educational programs in helping child/teen and family better understand pediatric MS and the different environments of the child/teens life that may be impacted.
  • Discuss opportunities to connect directly with other families and children/teens with MS.
  • Referrals to pediatric MS centers, academic guidebooks, targeted brochures and DVD’s, and emotional support resources.
  • Peer to peer connections with other families (if requested).
  • Connection with the local Society office to access programs and services in the community.
  • Access to email group of parents of children with MS for questions and support.

Wellness

Discuss what people affected by MS can do today to feel their best, and whether lifestyle interventions can impact the course of the disease through the Society’s Wellness Discussion Guide.
  • Address strategies of personal wellness including but not limited to:
    • Diet
    • Exercise
    • Emotional well-being
    • Occupational Wellness
    • Spiritual Wellness
    • Social Wellness
  • Provide education, information, and connection to programs and resources.
  • Live Fully, Live Well : The Live Fully, Live Well program is a tool to assist people living with MS to find strategies that support their personal exploration of wellness.

Spanish Resources

A variety of resources are available for Spanish-speaking individuals through a Spanish language toolkit also on our website;
  • Connect to full spectrum of MS Navigator services through bilingual staff and Language Line Services, a professional translation and interpretation service.
  • Connect to Café Con Leche - a monthly telephone support group for Spanish-speaking people living with MS. 

Veterans

The National MS Society is collaborating with the Department of Veteran’s Affairs (VA) MS Centers of Excellence to improve care and support services for veterans with multiple sclerosis and their families.
  • Ensure benefits available from “Service Connected” status.
  • Referrals to VA centers of Excellence.
  • Department of Veterans Affairs - Monthly conference call for care partners of veterans with MS.
  • Veteran specific community referrals.

Advocacy/ MS Activist Networks

Discuss and connect to information on Advocacy priorities and MS District Activist Leader (DAL) program:
  • The District Activist Leader program empowers volunteers to build impactful relationships with elected officials at all levels of government through the sharing of their personal stories of being affected by MS to advance priority legislation.
  • The District Activist Leader program is a nationwide initiative to equip key MS activist volunteers to build relationships with their elected officials. DALs s become the face of MS for their respective elected officials.
  • Through the MS Activist Network, activists connect with each other and with their elected officials to advance federal and state-level policies that improve the lives of people affected by MS.
  • MS Activist Network members seize opportunities through the monthly MS Activist Connector newsletter, federal and state action alerts, and important policy updates.

For Health Care Providers

Professional Resource Center: The Professional Resource Center provides easy access to information and resources about comprehensive, interdisciplinary MS management: Research: Discuss and provide referrals and information regarding clinical trials and research updates. Refer patients to NARCOMS for the clinical trial registry

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