The National MS Society is committed to addressing the challenges of persons living with MS, in part by providing timely customized response to the needs of individuals and families. The goal of care management is to help those people living with MS who need more than information and counsel to manage the effects of the disease on their lives.
The goal of this level of service is to maintain and/or enhance independent living capabilities and quality of life for people whose health and safety are compromised by limited knowledge and understanding about the program and benefits available to them. The chapter provides time-limited care management to locate, establish, and coordinate community resources and benefit programs (including those provided by the chapter) for both the person with MS and his/her family members.
You and your Care Manager will agree together on specific goals for your life and situation. You will work together to identify new resources to help you manage your life with MS and determine specific steps that can be taken to make things better. At the end of the process we hope you will feel that your life is easier and more manageable than it was before.
For information about on-site Care Management and Financial Assistance services offered at the New York City - Southern New York Chapter, click here.
Online Community Resources
Lotsa Helping Hands (www.lotsahelpinghands.com) is a free web-based service that allows family, friends, neighbors, and colleagues – the community circle of a person with MS – to more easily assist with household tasks that can become a burden during times of medical crisis. It’s an easy-to-use, private group calendar, specifically designed for organizing helpers, where everyone can pitch in with meals delivery, rides, and other tasks necessary for life to run smoothly during times of medical crisis, or family caregiver exhaustion. It is also a place to keep these circles of community’ informed with status updates, photo galleries, message boards, and more.
CaringBridge (www.caringbridge.org) is a free one-stop shop that connects and updates communities of support on a person’s ongoing health status, treatment, surgeries, progress in therapies and recovery. A personalized CaringBridge website helps keep others informed during difficult times. In return, family and friends give support through guestbook messages.
As a service and courtesy, the National MS Society wants to inform you of the following vendors that provide services you may be interested in. However, we want to be clear that the NYC - Southern NY Chapter does not endorse these services or products provided. Be advised that should you provide your name or information to any of these outside organizations, you may receive information from them or their commercial partners in the future. These are not National MS Society programs or partners.
1-800-LIFENET (1-877-AYUDESE en Español)
1-800-LIFENET, a confidential, toll-free 24-hour mental health help line for New York City residents, is operated by the Mental Health Association of New York City in partnership with the New York City Department of Health and Mental Hygiene. LIFENET assists people who are experiencing a crisis. LIFENET has authorized linkages with the 23 mobile crisis teams and Emergency Medical Services (EMS). This unique, life-saving authority allows LIFENET to provide a prompt response to callers in urgent need of psychiatric assistance.
MTA New York City Transit Access-A-Ride (AAR) provides millions of trips a year for eligible customers in New York City. AAR also provides service within a three-quarter-of-a-mile corridor beyond fixed-route service across the New York City borderline to nearby areas of Nassau and Westchester Counties. Some people use AAR occasionally, while others use it on a regular basis. AAR does its part to make New York City accessible to everyone.
Adult Protective Services (APS)
Adult Protective Services (APS) is a state-mandated case management program that arranges for services and support for physically and/or mentally impaired adults who are at risk of harm. APS seeks to promptly resolve the risks faced by eligible clients with service plans that will enable these individuals to live independently and safely within their homes and communities. Prospective clients may be referred by anyone.
Application for MTA Reduced-Fare MetroCard for People with Disabilities
The subway and bus fare in New York City is $2 per ride. Reduced fare is half fare ($1) or less with Reduced-Fare MetroCard discounts. If you are 65 years of age or older or have a disability that qualifies, you are eligible.
Barrier Free Living (BFL)
Celebrating over 25 years, Barrier Free Living (BFL) is dedicated to helping New Yorkers with disabilities live independently in the community. BFL provides a range of services and linkages to other community resources through our various programs, enabling individuals to overcome the obstacles that stand in the way of their living dignified, secure lives. They specialize in programs for domestic violence, homelessness, and disability advocacy.
Benefit Eligibility Screening Tool (BEST)
The Benefit Eligibility Screening Tool (BEST) helps you find out if you could get benefits that Social Security administers. Based on your answers to questions, this tool will list benefits for which you might be eligible and tell you more information about how to qualify and apply. Best screens for Medicare, Social Security Disability, Social Security Retirements, Social Security Survivors, Special Veterans, and Supplemental Security Income (SSI).
Can Do Multiple Sclerosis
Can Do Multiple Sclerosis, formerly The Heuga Center for Multiple Sclerosis, is a leading provider of innovative lifestyle empowerment programs for people with MS and their support partners. Can Do Multiple Sclerosis has a web-based lifestyle empowerment program where you can interact with other participants online.
The Center for Independence of the Disabled, NY (CIDNY)
The Center for Independence of the Disabled (CIDNY)'s offices in Manhattan and Queens provide benefits counseling, direct services (e.g. housing assistance, transition services for youth with disabilities, employment-related assistance, healthcare access, benefits assistance, and peer support groups), information and referrals, and recreational activities. There are no charges to consumers for CIDNY's services.
If you work in New York City and your paycheck doesn't cover all your expenses, EarnBenefits Online will help you learn about government and non-government programs and services that can help you make ends meet. Topics covered include Health & Nutrition, Children & Families, Tax Credits, Housing & Utilities, Community Resources, Careers & Training, and Needed Documentation for Benefits.
GreenPath Debt Solutions
GreenPath Debt Solutions is a nationwide non-profit consumer credit counseling service that has been helping people resolve financial problems, achieve financial goals and get relief from debt since 1961. Their compassionate, professional credit counselors are committed to helping you solve your financial problems and achieve your financial goals. Through debt counseling, debt management and financial education, they work with you to explore options and help you select the debt relief strategy that’s best for you. GreenPath also offers free debt counseling services either over the phone or in person.
Health Information Tool for Empowerment (HITE)
The Health Information Tool for Empowerment (HITE) is an online directory of health and social services specifically for low-income, uninsured and under-insured New Yorkers. With the click of a mouse, HITE connects you to a broad array of health and support services.
Independence Care System (ICS)
Independence Care System (ICS) is a Medicaid managed long-term care plan licensed by New York State for individuals with physical disabilities and chronic illnesses. Their mission is to provide their members with the health and social supports they need to live full and satisfying lives at home, in their own communities. ICS has a unit dedicated to people living with MS and works in collaborations with the New York City Chapter of the MS Society.
LawHelp/NY is an online tool for helping low-income New Yorkers solve their legal problems. It is the only comprehensive source of legal referral information in the state and includes: free legal service organizations with their contact & intake information, “Know Your Rights” and self-help resources covering 15 areas of law, extensive links to social service, advocacy and government organizations, and information about the Court system. Law Help/NY also has a Spanish language mirror website as well as legal rights resources in more than 30 languages.
Lutheran Multiple Sclerosis Center
The Lutheran Multiple Sclerosis Center provides comprehensive medical care and support to patients with MS.
Diagnostic and Treatment Services Include:
• Management of patients with MS and related disorders
• Infusion Therapy - medication given to you through a vein (IV)
• Neuropsychological evaluation and cognitive training (how the brain works in relationship to behavior)
• Social Services evaluation
• Nutritional evaluation and counseling
• Nursing and educational services
• Rehabilitation (inpatient and outpatient)
• Neuro-optometry - for patients with low vision after sudden damage to the brain due to accidents or illness.
• Spasticity management
• Specialty referrals including Urology, Ophthalmology and Behavioral Health
Medicare Rights Center
The Medicare Rights Center is a national, nonprofit consumer service organization that works to ensure access to affordable health care for older adults and people with disabilities through counseling and advocacy, educational programs and public policy initiatives. The Medicare Rights Center offers comprehensive services to help people with Medicare and their caregivers fully understand the options and sources of support that are available to them. Trained counselors are available to answer questions, explain benefits, address problems, and work with clients who wish to apply for Medicare Savings Programs.
New York City Department of Housing Preservation and Development (HPD)
HPD protects the existing housing stock and expands housing options for New Yorkers as it strives to improve the availability, affordability, and quality of housing in New York City. HPD has made a decisive shift away from City ownership of properties and has developed innovative community revitalization initiatives that promote private investment and productive public-private partnerships. HPD works with its governmental, community, non-profit and for-profit partners to strengthen neighborhoods, increase the availability of well-maintained, affordable housing and enable more New Yorkers to become homeowners. Click on the link below to view their currently lottery list for apartments and homes for sale.
NYC Disability Rent Increase Exemption (DRIE)
The Disability Rent Increase Exemption program (DRIE) was enacted in 2005 to protect eligible renters who have disabilities from being priced out of their apartments as rents increase.
NYC Mayor’s Office for People with Disabilities
The Mayor's Office for People with Disabilities works hand-in-hand with other City agencies to assure that the voice of the disabled community is represented and that City programs and policies address the needs of people with disabilities.
New York State Department of Motor Vehicles Disability Parking Information
Reserved parking for people with disabilities ensures safe and equal access to goods and services, access which most of us take for granted. This website presents information on how to obtain license plates and parking permits that allow individuals with severe disabilities to use specially-marked parking spots.
New York State Home Energy Assistance Program (HEAP)
HEAP is a federally funded program that issues heating benefits to supplement a household’s annual energy cost. HEAP also offers an emergency benefit for households in a heat or heat related energy emergency. Additionally, HEAP offers a furnace repair and/or replacement benefit for households with inoperable heating equipment. HEAP may help you pay for: Electricity, Propane, Natural Gas, Wood, Oil, Kerosene, Coal, or any other heating fuel.
Partnership for Prescription Assistance New York (PPARxNY)
PPARxNY is a program that connects qualified, low-income people with discount prescription drugs, direct from the pharmaceutical manufacturer. Their mission is to increase awareness of and enrollment in existing patient assistance programs for those who may be eligible. PPARxNY offers a single point of access to public and private patient assistance programs, including more than 150 programs offered by pharmaceutical companies. Search their database to see if any assistance programs are available for your prescription.
Patient Assistance Programs
Pharmaceutical companies that offer financial assistance for MS medications for those who are eligible, they do not represent therapeutic recommendations or prescriptions. For specific information and advice, consult a qualified physician.
Betaseron® - Pathways
The Betaseron Patient Assistance Program provides Betaseron to patients who meet program eligibility criteria and are otherwise unable to gain access to therapy.
Avonex® and Tysabri® - Avonex Alliance
Biogen Idec offers numerous patient assistance programs for new and existing patients. Patient assistance services can range from: co-pay assistance, alternative funding to assist with the cost of therapy and free drug programs.
Copaxone® - Shared Solutions
A copay assistance program is available through Shared Solutions for those who qualify. There is also assistance for Medicare Part D and free product for those who qualify.
Rebif® - Multiple Support Service
The MS LifeLines Access Made Simple Program provides simplified and affordable access to therapy for people with relapsing forms of MS. The program is available to U.S. patients who have either been newly prescribed Rebif by their physician or who have restarted Rebif therapy after having discontinued it for more than 90 days. All eligible participants will receive up to one year of therapy regardless of income level, with no more than a $50 co-payment per month required of any patient.
Social Security Disability Insurance Program (SSDI) & Supplemental Security Income (SSI)
The Social Security Administration pays disability benefits under two programs: The Social Security disability insurance program pays benefits to you and certain family members if you worked long enough and paid Social Security taxes. Your adult child also may qualify for benefits on your earnings record if he or she has a disability that started before age 22.
The Supplemental Security Income (SSI) program pays benefits to disabled adults and children who have limited income and resources. SSI benefits also are payable to people 65 and older without disabilities who meet the financial limits.
United Hospital Fund’s Next Step in Care
Created by the United Hospital Fund, Next Step in Care: Family Caregivers and Health Care Professionals Working Together is a multi-year, multi-dimensional campaign that is designed to change health care practice by routinely recognizing, training, and supporting family caregivers, especially at times of transitions in care. Next Step in Care takes on the challenge of changing decades-old practice by providing practical advice and easy-to-use guides for both providers and family caregivers that focus on transitions between hospitals, rehabilitation facilities, nursing homes, and home. The campaign is part of a broader movement in health care to improve quality and safety. While New York is the focus of the Fund's and this campaign's work, the impact and relevance are national.