Housing/Other Essential Needs

This section will summarize major available needs programs for income-eligible disabled persons:

  1. Subsidized rental housing programs
  2. Food stamps and other food assistance programs
  3. Energy assistance programs
  4. Home care assistance programs
  5. Transportation assistance programs
  6. Prescription help
  7. Other social service programs

Each major program area is specifically discussed as they are operated in Massachusetts; however, many of these programs are federally-sponsored and are available in other states (including housing, fuel assistance and food stamps). Other states will also administer their own needs programs, in a variety of areas, at both the state and local level.

There is one information and referral Service in Massachusetts for multiple needs programs/resources

Mass211 Information and referral services:

In Massachusetts, there is an excellent website Massachusetts 211 Help Steps which provides a wealth of information on the many different programs available to income eligible disabled and non-disabled persons. It is the website for the major Information and Referral Service for a host of human services called  Massachusetts 211.

In addition to using the website to get connected to the help you need where you live, you can simply pick up the phone and dial 211.

You can get information on food banks, clothing, shelters, rent and utility assistance, medical information lines, support groups, counseling, rehabilitation, health insurance programs, Medicaid and Medicare, unemployment benefits, financial assistance, transportation, home care, meals on wheels, respite care, homemaker services, and other services too numerous to list here. You will speak to a live person, who by using your zip code can access a major data base of services closest to where you live. It is truly an excellent resource. 211 telephone assistance is available 24 hours a day, 7 days a week. All calls are confidential. Besides Massachusetts, it is available in 40 states and the District of Columbia.

The following are some of the major types of services/resources provided:

  • Elder care resources, which include help applying for Medicare and Medicaid and obtaining transportation.
  • Food assistance, which includes help for food stamps, food pantries, and other programs.
  • Housing programs, which include help for accessing subsidized housing, maintenance and repairs, and many other programs. For a complete list of housing programs, please see the Housing section below.
  • Income/Financial Assistance.
  • Legal Aid.
  • Medical Care & Insurance, which you can use to find Community health centers, Dental care, help applying for Medicaid and Medicare, and help paying for medical bills, medications, and medical supplies.
  • Mental Health, which offers resources for identifying counseling and mental health services, as well as suicide hotlines and interventions.
  • Special Health Care Needs, which covers financial assistance, job support, legal services, living assistance and social support, and advocacy for individuals with special needs, and also help getting health insurance.
  • Transportation, which covers bus passes, discounted public transportation, free rides, and transportation for individuals with special needs.

Housing assistance programs

A chronically-ill person who is no longer able to work and must rely on a Social Security program for income assistance or even a person on long-term disability (LTD), may at some point find s/he is no longer able to meet their housing costs. Patients, especially those on Social Security, often find that their monthly check is simply inadequate to pay their rent or mortgage, as well as their other basic costs of living.

Home-owner programs

For those individuals who have difficulty meeting their mortgage payments, help is available. Go to Mass211 search page and search on "mortgages-foreclosure."

The Office of the Massachusetts Attorney General maintains a website, Mortgage Lending and Foreclosures, which provides information on preventing foreclosure and loan modification. You can also call 617-727-8400.

Subsidized rental housing

Many disabled individuals on Social Security or long-term disability insurance find they must seek federally or state subsidized rental housing. Subsidized apartments are provided under a variety of state and federal programs—however, most operate by paying, or subsidizing, a substantial portion of the tenant's monthly rental payment. Under most of the programs, an income-eligible tenant will pay 30%-40% of their monthly income toward their rental payment, and the state or federal government will pay the remainder to the owner. Most of the programs set a limit on the monthly cost of apartments for which subsidies can be provided.

There are several different forms of subsidized housing and most of them are either federally-funded or state-funded.

There are three general forms of subsidized rental housing:

  1. Housing developments owned and managed by local Public Housing Authorities in Massachusetts cities and towns. These developments contain apartments for families, the elderly, and the disabled who are income-eligible. Developments are either federally-aided (through the Dept. of Urban Development – HUD) or state-aided. The state and federal programs may have different eligibility requirements and preferences.
  2. Privately-owned developments containing subsidized apartment units. These developments are owned by private companies and contain a certain number of subsidized rental units. An income-eligible individual seeking a subsidized rental unit will apply directly to the specific development.
  3. Rental Vouchers (or Certificates)—Rental vouchers are "mobile," meaning the individual is not limited to finding an apartment in a specific development, but may seek an apartment on the private rental market that meets certain specifications and standards. There will be a ceiling on the amount of monthly rent for the size and locale of the apartment, the apartment must meet the state sanitary code, and the landlord must be willing to accept the voucher.

There are separate voucher programs funded by the federal and Massachusetts state governments. Certain voucher programs give priorities to individuals in particular categories, including the disabled, and also the homeless or people in danger of becoming homeless. Vouchers are available in Massachusetts from both eight Regional Non-Profit housing agencies and 112 Local Housing Authorities.

Housing counselling, and evictions, and homelessness

If you are in danger of homelessness or are homeless and need Emergency Shelter or Housing, the following resources are available:

Contact the Department of Transitional Assistance or call their hotline: 1-800-445-6604. The Department will determine if you are eligible for the Housing Assistance Program. If you need temporary shelter, ask for a list of shelter referral services and the list of temporary shelters.

Also call your local Housing Authorities for Emergency Housing information.

City Life/Vida Urbana&emdash;Provides assistance with eviction and anticipated homelessness in Boston. Provides legal assistance and direct help with eviction problems. Also provides housing counselling.

Housing Related Legal Assistance: Greater Boston Legal Services (617) 371-1234

Housing and assistance to the Elderly—Central Boston Elder Services: This elderly assistance agency provides some counseling on obtaining housing.

Another option is Congregate Housing which is multi-unit housing with support services for elders and disabled persons who do not want to live alone. It combines privacy and companionship, by offering each resident a private bedroom or apartment, and shared living space and activities. Another variant is Co-Housing.

Each of the three types of subsidized rental programs will now be summarized:

Public housing

Local public housing authorities own public housing developments/projects. Apartments in these developments are generally reserved for the elderly, disabled and low-income and moderate-income families. Some developments are specifically for the elderly and disabled. There are income-eligibility and asset guidelines, and a disabled person must present evidence of their disability.

The quality of the housing and life in the development is often specific to the particular development or the community in which it is located. In many cities or towns in Massachusetts, elderly and disabled public housing developments may be more than acceptable places to live.

Most public housing authorities have waiting lists, and an individual may or may not have a choice of which development they are assigned to by a specific authority.

In general, a tenant will pay about 30% of their income for rent. Applications are made to individual housing authorities. An individual should survey various public housing developments in different locales. Often waiting lists are long, so if you can get on several waiting lists, so much the better.

If you are in an emergency—about to be evicted—most authorities provide emergency housing on an expedited basis. There are 253 local public housing authorities in Massachusetts.

You can obtain a list of housing authorities in the booklet how to obtain housing assistance in Massachusetts.

The following websites provide information on the different aspects of public housing programs—including on-line applications:

public housing assistance programs: This web page provides basic information on the different state public housing programs including: an elderly/handicapped program for low income elderly and non-elderly handicapped persons, senior supportive housing for elderly and handicapped persons, and other programs, too.

The next two links describe how to apply for public housing programs and provide an online application:

How to Apply for Public Housing.

You can apply for state-aided public housing online at CHAMP (Common Housing Application for Massachusetts Programs)

This website provides the CHAMP common application for applying to most Massachusetts public housing authorities. in the CHAMP common application the person has to list the authorities to which they are applying, and the application will be forwarded to all the selected authorities. the individual sets up an online account for the application.

This application is also for the alternative voucher program (AHVP) which provides a “mobile” housing market for apartments on the private market for non-elderly disabled individuals. (More on vouchers below.)

Some housing authorities, including Boston, do not participate in the common CHAMP application. For each non-participating authority the individual will need to fill out a separate application.

Federally-aided public housing developments do not use the CHAMP application. These developments are administered by local housing authorities but are overseen by HUD. To obtain a list of these developments and applications go to the U.S. Department of Housing and Urban Development. Your local housing authority can also provide information on their federally-assisted developments.

Rental Assistance Programs: These various programs administered by the federal government and by the state provide subsidies that are either for specific apartments in privately-owned developments or are “mobile” (vouchers), which can be used to find apartments on the private market.

An important resource for understanding these rental assistance programs is Massachusetts Government Rental Assistance Programs.

Privately-owned developments with federal or state subsidized rental units

Various privately-owned apartment complexes set aside a percentage of subsidized apartments for disabled and other individuals with low and moderate incomes. You apply to the rental office at the development. If you are accepted, you pay about 30%+ of your monthly income to rent the apartment. You should apply to as many developments acceptable to you as possible, since the length of waiting lists will vary for different developments in different localities.

These privately-owned apartment developments fall into two categories— those subsidized by the U.S. Department of Housing and Urban Development (HUD) and those subsidized by the Massachusetts Housing Agency.

Each agency publishes a separate list of developments in Massachusetts cities and towns that the agency subsidizes. Each list describes, by city and town, the address of the development, the number and size of the units, and whether subsidized units are set aside for the disabled, the elderly, and/or families.

A listing for HUD-subsidized developments in Massachusetts (and in other states) can be obtained at Contact HUD: Massachusetts. Or you can call 1-800-569-4287, and ask for the HUD list for Massachusetts.

One major list of all the state-subsidized, privately-owned developments in Massachusetts is Massachusetts Housing List Search

The full list for Massachusetts lists over 800 developments by city and town. There is a separate list for Boston. The list provides the name of the management company that provides an application and the number of differently sized units.

It also contains a listing of the federal HUD developments.

The full Massachusetts list also provides links to many other invaluable housing subsidy resource links.

A person seeking subsidized housing should identify which cities or towns she or he would like to live in and then obtain the state and federal housing lists. he or she should apply to as many acceptable developments as possible since waiting lists can be longer or shorter.

No matter what type of housing one applies for s/he should always let the owner of the development or housing authority know of any change of address and phone so that he or she can be contacted when an apartment becomes available.

A truly incredible housing search list for privately and publicly owned developments is The Housing Works Search List.

There are over 44 different types of subsidized and affordable housing — and only Housing Works lets you search for all your options in one place.

More than 200,000 applicants have used our system to locate and apply to subsidized housing by working through a housing advocate or social service agency. countless others use the free search feature below.

This list allows the individual to put in their preferences for almost all subsidy programs – such as developments, vouchers, number of rooms, cities and towns, etc., elderly, disabled. There are photographs of many of the developments as well as applications that can be printed out.

This is a go-to resource for viewing all the different types of subsidized housing — and to be able start making choices for submitting applications. **

Tenant-based or "mobile" housing vouchers

Housing vouchers provide financial aid to help low-income persons rent apartments other than apartments in specific projects or developments. An income-eligible tenant who receives a voucher may find an apartment in any city or town up to a specified rental ceiling depending on the number of rooms and family size. The apartment must be up to the housing code, and the landlord must be willing to accept the voucher. Both the federal government and the Massachusetts state government offer a number of voucher programs.

To obtain full information on the different federal and state voucher programs, see the rental assistance section in How to Obtain Housing Assistance in Massachusetts.

The Different Voucher Programs

Section 8 Housing Choice Voucher Program (HCVP): The federal government finances the Section 8 Housing Voucher Program, and the Massachusetts Department of Housing and Community Development provides administrative oversight. The program itself is operated through local housing authorities and eight Massachusetts regional non-profit housing agencies.

Income eligible households are issued a Section 8/HCVP Voucher. The family is then given up to 120 days to locate their own rental housing, which can be located anywhere in the country, or they can elect to remain in their current unit provided it meets program requirements. Rental units must meet minimum standards of health and safety. Rhe rent for the unit must be reasonable in comparison to rents charged for similar, unassisted apartments in the area. A rental subsidy is paid directly to the landlord on behalf of the participating family by the housing agency. The subsidy is determined by the family's income. The family pays the difference between the actual rent charged by the landlord and the amount subsidized by the Section 8 program.

Eligibility for a housing voucher is determined by the total annual gross income and family size and is limited to U.S. citizens and specified categories of non-citizens who have eligible immigration status. In general, the family's income may not exceed 50% of the median income for the county or metropolitan area in which the family chooses to live. Priority is given to persons first with extremely low incomes, and then very low incomes. Vouchers are obtained from both any of the 112 individual public housing authorities in Massachusetts and the eight Regional Non-profit Housing Agencies.

How to apply:

Applicants may contact any one of DHCD's eight regional administering agencies to request an application, or a hard copy of the DHCD application may can be downloaded and then submitted to any of the regional agencies.

If you apply to one agency, your name will be placed on a state-wide waiting list maintained by the Massachusetts Department of Housing and Community Development. These waiting lists are quite long, but if you obtain a voucher from any of the regional housing agencies you can usually use it anywhere in the state. The regional housing lists are always open. A listing of the regional agencies can be found here

You should also apply to any of the local public housing authorities which also provide Section 8 vouchers – although waiting lists can be quite long. Some authorities do not provide vouchers or have closed their lists. There is now a centralized waiting list in which 98 of the 253 authorities participate – you need to apply to only one authority to be considered by all 86 authorities. To obtain an application or apply online for the centralized list go here.

You may also apply separately to each housing authority that does not participate in the centralized list.

Some of the agencies above establish preferences depending on a person’s income, involuntary displacement, domestic violence, landlord action, and/or having a disability. Also preferences are made for being homeless, paying more than 50% of income for rent. Some housing authority programs provide preferences for local residents. Other preferences also exist. Check for preferences with the agencies you apply to.

To learn about the status of Housing Choice Vouchers at each housing authority go here.

The Massachusetts Rental Voucher Program (MRVP)

This program provides “mobile” vouchers that can be used anywhere in Massachusetts (but project-based vouchers are only available in specific developments, see above). For a description of the program see this site.

There are income and asset requirements for the program: Please visit HUD for current income limits.

This voucher program is administered by Local Housing Authorities. Some PHAs have less of a demand for these vouchers, so a person should apply to as many local PHAs where they might want to live. Some waiting lists are shorter than others and these vouchers may be more available than the HCVP Section 8 Vouchers. Each housing authority has a separate application. There is no centralized list.

A second voucher program operated by the state is:

The alternative housing voucher program (AHVP), which provides rental assistance to people with disabilities under the age 60, who either live in, or are eligible to live in elderly/disabled state-assisted public housing.

To apply, please contact your local housing authority and ask if they have the program. You may also ask the housing authority for their income guidelines. For more information, call the Massachusetts Department of Housing and Community Development (DHCD) at (617)-573-1150.

There are many separate housing resources available to assist people with the above programs and to provide other housing assistance:

MassAccess is a resource for assisting disabled persons find the housing they need. It is operated by the Citizen's Housing and Planning Association. MassAccess provides listings of affordable rentals and sales. Their phone is 617-742-0820.

Especially useful for the disabled in finding housing is their Housing Search Guide for People With Disabilities.

“This book provides information about searching for rental housing in Massachusetts for people who have one or more disabilities. Most of the information is also helpful to people who are low-income. The book provides a guide to steps in the housing search. It explains the types of housing available, including subsidized housing. The book provides resources for locating housing and for help from housing advocates.”

Another excellent resource is the Locate a Service Provider website.

Once you type-in your city or town, both housing and other resources for all types of problems, including homelessness, energy assistance, etc. are listed for where you live.

Massachusetts Rehabilitation Commission provides a myriad of services for people who are disabled, including:

Independent Living Centers

What is an independent living center?

Independent Living Centers (ILCs) are private, nonprofit, consumer-controlled organizations providing services and advocacy by and for people with all types of disabilities. They create opportunities and help you achieve your greatest level of independent living within your family or community.

Centers for independent living help people with disabilities reach their goals through peer counseling, skills training, advocacy, and information and  referral. Centers may also provide a range of other services such as housing referrals, communication help, support groups, transportation, health information and much more. They also serve as a strong consumer voice on a wide range of national, state and local issues.

Community-based independent living is the best option for people with disabilities. The average yearly cost of institutionalization is $110,000, while the typical cost of independent community-based living is $35,000-50,000. Independent living centers are vital in helping people with disabilities make the transition from costly institution-based settings to less expensive community-based living.

For the independent living center nearest you, go to this site.

Resources for Housing Counselors

Metro Housing Boston  is the regional housing agency for the Boston area. Check out the “What We Do” section for the housing voucher programs. The agency also assists people with eviction and homelessness.

The agency has a program, the Housing Consumer Education Center at 1411 Tremont Street in Boston. You can meet with one of their counselors to discuss your housing needs. Go to the link to find out their walk-in hours.

Their phone number is: 617.425.6700 (hours: 9:45 a.m. – 4:00 p.m.)

Talk to a Housing Counselor.

For Consumer Education Centers across the state, go to their site.

Check out this link on their site, which is currently dedicated to resources needed during the current corona virus pandemic.

The City of Boston Metro List Check out the “Housing Search Resource” topics, including “Housing and Rental Help”, “Identifying Affordable Housing,” etc. “Metrolist is a clearinghouse for income-restricted and affordable housing opportunities in boston and neighboring communities. we can help you search for housing, or list your rental unit for free in our database.” Also. 

For further information from both the U.S. Housing and Urban Development website and the Massachusetts Housing website, please see the following specific links:

U.S. Housing and Urban Development website:

Search for a subsidized apartment.

For a list of public housing authorities in Massachusetts.

For rental units in rural Massachusetts.

Massachusetts Government Affordable Housing.

Food assistance

Please search on the various suggested categories under Food at Mass211.

Food Stamps (SNAP)

The U.S. Dept. of Agriculture provides funds to all states for the Food Stamp program. (The Food Stamp Program has a new name SNAP—the Supplemental Nutrition Assistance Program.) If your income and assets are under a certain amount, you can apply to your state public welfare agency for food stamps. Each month, you will obtain a certain value of food stamps that you can use to purchase food and some other items. In Massachusetts, call your local Dept. of Transitional Assistance to learn how to apply. For locations statewide, call 1-800-249-2007.

Food pantries and other food distribution programs

Many communities, through local churches, food pantries, and other charities, provide free food distribution to individuals and families who cannot afford the cost of food. Check with your local community action or other agency to find out about such food distribution networks within your area.

Here is a listing of some of the different types of programs

1) food pantries and free meals—food pantries provide free uncooked food to take home, and free meals programs provide a place to go to eat cooked meals free of charge;

2) meals-on-wheels and dining centers;

3) bags of food and food packages—check with your local community action agency. If you do not know which CAP serves you in Massachusetts, call the Division of Neighborhoods and Economic Opportunity at 617-722-7004. They will direct you to the correct CAP.

Energy assistance

Energy assistance

Again, check the Mass211  website for a full listing of programs and agencies.

Heating assistance

The Low Income Home Energy Assistance Program (LIHEAP), usually called Fuel Assistance helps low-income individuals pay their heating bills. Eligibility is based on income and the program is both for homeowners and renters. The fuel assistance program is administered through local community action programs (CAPS).

For the Fuel Assistance Agencies statewide, call 1800-632-8175. There are several other programs listed at Mass211 if you search the term "Heating Fuel Assistance." These include Citizen's Energy Heat Assistance (Call Joe for Oil), the Good Neighbor Energy Fund, Utility Arrearage Programs for Overdue Utility Bills, Utility Discounts, and Mass. Save.

Home care assistance—Homemakers, Housekeepers, Personal Care Assistants

Many patients with ME/CFS and FM are sufficiently disabled that they may frequently or periodically need some kind of in-home assistance with the daily tasks of life—such as buying food, preparing meals, laundry, house cleaning, picking up medication, etc. When you are in a bad relapse, even getting out of bed and doing the smallest task is nearly impossible. There are times we all need help. If you don't have a family or friends to help, you may need to obtain the assistance of homemaker, housekeeping or personal care attendant services.

Homemakers assist with shopping, cleaning and meal preparation. They can often be hired, at an hourly rate, through home care agencies and visiting nurses associations.

For those of limited means, payment for such services is sometimes available through public agencies assisting the disabled.

In Massachusetts, the Mass. Rehabilitation Commission's Home Care Assistance Program provides homemaker services free of charge to income-eligible people with disabilities (ages 18–59, with no children in the household.)

Also see the section below on the provision of Home Health Services through Massachusetts Health.

I. Massachusetts Rehabilitation Commission

The Commission is a Massachusetts government agency that provides services to disabled people in Massachusetts.

Homemaking services: HCAP Case Managers determine eligibility, coordinate services and give you resources needed to live independently. Homemaking Services are provided either by an agency or by people you choose. Homemaking Services are defined as direct help with meal preparation, grocery shopping, medication pickup, laundry and light housekeeping (limited to dusting, vacuuming, mopping, kitchen clean-up, bathroom cleaning, bed changes, and trash removal).

Homemaking services are provided only to adults with disabilities between 18 and 59.

You are eligible if you:

  • Have a disabling condition which keeps you from doing one or more homemaking tasks.
  • Require homemaking help to prevent hospitalization or institutionalization.
  • Meet the MRC-HCAP financial guidelines.
  • Live alone* or with another adult relative or significant other with a disabling condition.
  • Are between the ages of 18 and 59.
  • Are not legally blind (The Massachusetts Commission for the Blind also has a program).
  • Do not already have services through a comparable benefit such as a PCA.

*Individuals with children under 18 years old may be eligible for services if they meet all other eligibility criteria, however, services are provided only to adults with disabilities.

To apply and get more information, call the Intake Coordinator at 1-800-223-2559, and then dial 3.

Independent Living Centers (ILCs) are private, nonprofit, consumer-controlled organizations providing services and advocacy by and for people with all types of disabilities. Centers for Independent Living help people with disabilities reach their goals through peer counseling, skills training, advocacy, and information and referral. Centers may also provide a range of other services such as housing referrals, communication help, support groups, transportation, health  information and much more.  They also serve as a strong consumer voice on a wide range of national, state and local issues.

For the Independent Living Center nearest you, click here.

For these services contact: Betty Sughrue Sneirson, Adult Supported Living Program Coordinator at 617.204.3722 (telephone) or This email address is being protected from spambots. You need JavaScript enabled to view it. (email).

MRC Assistive Technology Services

Assistive technology is any device that improves a person's ability to live more independently. Many different items are considered assistive technology, including adaptive computer equipment, walkers, hearing aids, memory enhancement aids, print magnifiers, wheelchairs, vehicle modifications and more. Some home modifications and vehicle purchases also are covered.

Adult Supported Living (ASL)

The Adult Supported Living (ASL) Program provides ongoing services for adults to live independently in the community. The program is designed to support people living with severe physical disabilities in combination with a secondary disability. MRC contracts with agencies statewide to provide case coordination.

Services include: Finding accessible housing, the personal care assistant program, household management, transportation, adaptive equipment, accessing educational, vocational assistance, and social & recreational opportunities.

Who is eligible? An adult living with a severe physical disability and a secondary (sensory, cognitive, or emotional) disability which significantly impede the individual’s ability to manage their day-to-day life.

Potential applicants need to have a) Massachusetts residency, b) the ability to handle the emotional stresses of community living with reasonable supports, and c) be their own guardian. Consumers receiving comparable services through another state agency or MRC Community Based Services (Waiver or SHIP) are not eligible.

  • There is no financial need criterion
  • The program does not include the provision of companionship or supervision. Consumers must possess the cognitive and psychological abilities to make safe decisions on a moment-to-moment basis.

Other MRC Programs for the Disabled:

The Turning 22 (T22) program:

MRC works with special education departments to coordinate services for students who will be graduating and needing supported living services to meet their independent living goals. Students begin meeting with a case coordinator during their last year in school. MRC funds agencies statewide to provide on-going case coordination services to transition and maintain into school, work and living in the community.

Eligibility For T22: Consumers need to be eligible for Chapter 688 transition planning with an independent living goal.

Interested in T22? Please contact: Anna Hermann, Independent Living Programs Supervisor, 617.204.3786 (telephone) or This email address is being protected from spambots. You need JavaScript enabled to view it. (email).

Vocational Rehabilitation Services:

The Vocational Rehabilitation Program helps job seekers with disabilities obtain and maintain a job. Vocational rehabilitation helps people with physical, cognitive, intellectual or mental health conditions manage the modern workplace.

To consider utilizing MRC’s vocational rehabilitation services a person must meet the following eligibility requirements:

  • Have a physical, cognitive, intellectual or mental health condition which creates or results in a major obstacle to employment; and
  • Require VR services to prepare for, secure, maintain, advance, or regain employment

II. Visiting Nurses Association – Massachusetts (VNA)

Massachusetts VNA will do an in-home assessment of a patient’s needs, sometimes after a hospital stay, and will either arrange for a provider/agency to provide the service or will give the patient a list of appropriate referrals.

The VNA is organized by locality or region—and presumably there is a Mass. VNA administrative office. Here are some of the services provided: When a patient is learning to manage a chronic disease, transitioning home from the hospital, or rehabilitating after an injury or surgery, VNA Care may assist patients to continue the level of care necessary to help restore health, well-being and independence all from the comfort of home.

Home care can be provided for

  • Those who suffer from chronic illnesses, including heart failure, diabetes or respiratory disease.
  • Someone transitioning home after a hospital stay.
  • A patient in need of physical therapy following a joint replacement.
  • Adults or children with physical or cognitive disabilities.
  • Aging adults who require help with daily living tasks or personal care.

Palliative Care Program

The Palliative Care Program is specially designed to provide support, comfort, and improved quality of life for anyone living with a serious or complex health condition. It is appropriate at any stage of an illness and can be a part of a care plan that includes treatment for a disease.

Additional support including nursing, therapy, and social work is available as needed. All care is provided in coordination with your personal physician and with the support of our own medical director.

Clinicians work with patients to meet their goals and address their concerns, which may include:

  • Managing pain, nausea, fatigue, shortness of breath, anxiety, and other distressing symptoms and helping to deal with side effects of therapies.
  • Improving ability to continue participating in day-to-day activities.
  • Achieving the best possible quality of life — most of our patients find that when their pain and discomfort are relieved, their quality of life is enhanced.
  • Offering a support system to help you and your family or caregivers cope.
  • Helping with identification of treatment options and care goals.
  • Guiding you through a sometimes complex health care system.
  • Assisting with advance care planning, financial issues related to illness and caregiving responsibilities, and insurance and financial paperwork.

Palliative Care is oftentimes covered by Medicare and other health insurance plans.

III. Boston Mayor's Health Line

The Mayor’s Health Line (tel.: 617-534-5050) works to ensure Boston residents’ ability to access services and programs that promote health and wellness. The MHL staff is available to help residents with a variety of services including, answering questions about health insurance eligibility, enrolling in health insurance, finding primary care providers, finding social services, locating free clinics and many more.

IV. Mass. Health (Medicaid) Home Health Services

Home Health Care can be provided to lower income persons through the Mass. Health (Medicaid) program.

Also Massachusetts Health can provide Personal Care Assistants (PCAs)—The PCA program is funded by Medicaid and administered by the Independent Living Centers. To be eligible for the program you must need a certain number of hours of personal care assistance (help with food shopping or preparation, personal hygiene, household maintenance, etc.) per week and be Medicaid eligible. To find out more, call your local Independent Living Center at 1-800 462-5105. If you are not eligible for Medicaid, you may be able to obtain personal care assistance through your local Visiting Nurse Association, Senior Care agency, or private personal care assistance agency.

Massachusetts Health also offers Senior Care Options—the program provides home health care and other social services:

Medicare and medical insurance may pay for a variety of types of home health care under various circumstances.

V. Local Senior Care Agencies

Also older disabled persons may be able to obtain homemaking assistance from local senior care agencies. Some health insurance programs may provide payments for these services for a limited period.

VI. Delivery of food and medicine

Some supermarkets will take a shopping order for delivery by phone or computer. In many areas in Massachusetts, Stop and Shop, through Peapod, will take a computer order and deliver your food to your door. Shaw's supermarkets in the Boston area has a delivery service. You can check with your local supermarket or food store to see about possible delivery of an order.

Some pharmacies may have home delivery services. If you are too sick to pick-up your medications, your local taxi company will often pick-up and deliver your medication for a fixed cost.

Transportation assistance

Public transportation

Reduced rate passes for people with disabilities on the MBTA (in the Boston metropolitan area). For information contact: 617-722-5438. Commuter Rail also has special disability reduced rate passes.

The RideThe MBTA's Ride provides advance notice, door-to-door transportation to those who, because of mental, physical or sensory disability, are unable to use general public transportation. The Ride has wheel-chair equipped vans and covers the same service area as the T and Commuter Rail. For more information and an application, contact: MBTA Office for Transportation Access, Ten Boylston Pl., Boston, Mass., 617-722-5123.

Other communities have programs similar to The Ride. Check with the local public transportation authority.

Handicapped motor vehicle placards in Massachusetts

In Massachusetts the Registry of Motor Vehicles offers handicapped placards for people with ME/CFS who qualify as sufficiently disabled. The placard allows for parking in designated handicapped parking areas. The placard also allows free parking at meters in Boston. (Check regulations for other cities and towns). These benefits can be quite important for those who are sufficiently disabled as to need the ability to park closer to supermarkets, places of business, etc.

To apply for a placard (the placard is mobile, so it can be used in different cars) or plate, a person with ME/CFS must have his or her physician complete a Registry form. The two most important criteria of eligibility as related to ME/CFS are as follows:

(1) the doctor must state the diagnosis and nature of the impairmentwhich would be to confirm the ME/CFS diagnosis. The doctor would also provide information on the prognosis of the illness (how long it is expected to last) and on its severity;

(2) The doctor must confirm that the patient cannot move more than 200 feet. The Registry emphasizes that the mobility issue is of prime importance and must be documented by the physician. If the Registry gets only partial information, it will have to ask for a more complete evaluation. The essential focus for approval is for the physician to explain exactly how the patient is impaired: how easily, quickly, or unexpectedly the patient tires, and the extent of weakness and its direct effect on the lower extremities.

Note: With many patients, there are some days a person might be able to walk the 200 feet, but then suffer substantial after-effectsincluding relapse of substantial symptomsso walking the distance is medically too risky. Again, the person might be able to walk the distance on some days and not on others, so the person should have the placard; or the distance might be walked but only under conditions of suffering. All these points should be taken up with the person's physician before submitting the Registry form.

Nothing should be submitted to the Registry which might be construed as a medical reason for questioning the person's ability to drive safely.

Free or low-cost prescription drugs for lower income individuals (Patient Assistance Programs)

Patient assistance programs (PAP's) are programs established by drug companies that provide free or low-cost drugs to individuals who are unable to pay for them. These programs may also be called charitable drug programs, indigent drug programs or medication assistance programs. Most prescribed drugs are available through these programs. All of the major drug companies offer patient assistance programs, but each company has its own eligibility requirements and application procedures.

To utilize these programs for your prescriptions, you must first find out which company manufactures each of your prescriptions. You then apply to each company for the specific medication(s) the company manufactures.

You must meet program income eligibility requirements, which may differ somewhat from company to company. Generally, individuals must have an income below 200% of the federal poverty standard, must be a U.S. resident or citizen, and must not have other prescription drug coverage.

There are two websites that provide comprehensive information on which medications are manufactured by each company, as well as how to obtain applications for each company's program. The Partnership for Prescription Assistance at www.pparx.org —phone number: 1-888-477-2669, will allow you to download company applications.

A second program, RxAssist—a Patient Assistance Program Center, www.rxassist.org —phone number, 401-729-3284, also provides comprehensive information and assistance. You must fill out each application carefully, according to instructions. Some companies require that the physician's office obtain the application form by calling the company.

After the form is completed and submitted, the company will decide if you are eligible. If an individual is approved, the medication may be sent directly to the patient, to the doctor's office, or to the patient's pharmacy - depending on the program. Most medications provided are free, but some companies require a small co-payment.

Each company will have a different procedure for refills. These programs are extremely helpful for those who have no other means to pay for their prescriptions.

Delivery of medicationsSome pharmacies may have home delivery services. If you are too sick to pick-up your medications, your local taxi company will often pick-up and deliver your medication for a fixed cost.

Other social service programs


State and Local Disability Commissions—These agencies assist disabled persons with a variety of resources and programs.

The Massachusetts Office on Disability—tel:1-800-322-2020. This agency can provide information, referral and advocacy for a wide variety of issues and problems facing disabled individuals. The Office provides direct advocacy for individuals who are having problems obtaining services from the Mass. Rehabilitation Commission, or who are suffering various forms of job discrimination. Information, referral and advice are provided for many other problemsincluding housing, medical assistance, transportation, independent living, and other needed services.

Many cities and towns have disability commissions, social service departments, or civil rights commissions that can assist you. To find out about this type of assistance in your community, call your city or town hall.

Massachusetts Rehabilitation Commission—tel. 617-727-2183. The major function of the Commission is to provide vocational rehabilitation services to the disabled. If you are determined to be disabled by the Commission, you may receive extensive training, education, rehabilitation and support services for future employment more compatible with your disability. (You can receive assistance from the Commission if you are collecting Social Security benefits or if you are disabled and not receiving such benefits.) The Commission also offers homemakers/chore services to assist the disabled (see above section).

The Disability Law Center—tel.: 617-723-8455   The Disability Law Center in Massachusetts is a state-wide legal advocacy, information and referral agency for individuals with disabilities. The center does not usually provide individual legal representation, but it can assist in  providing attorney referrals

Disability lawyers at the Center can answer by phone more difficult technical and legal questions concerning many aspects of the Social Security Disability programs. If you have been denied unemployment compensation because you cannot work full-time and can only work part-time due to your disability, the Center may be able to assist you obtain benefits. Also if you cannot continue to do your present job due to your level of disability but could still function within your company at reduced hours or in another capacity, the Center can advise you as to your legal right to job accommodations.

Health Care for All—Boston, Massachusetts. Assists individuals without health insurance to learn about various insurance options and how to go about obtaining insurance. On the web, go to: www.hcfama.org or call 617-350-7279.

Medical Insurance Programs

This section covers Medical/Health Insurance Programs for the Disabled, including Medicare, Medicaid, COBRA, the Affordable Care Act, State insurance programs, and drug assistance programs through pharmaceutical companies.

Medicare and COBRA


COBRA is a federal law that allows persons on Long-term Disability (LTD) or Unemployment Compensation to purchase medical insurance at a Group rate, thus reducing the cost one would pay for an individual policy.


Medicare is the federal health insurance system for people on Social Security Retirement and Disability Insurance.  For those on disability insurance, an individual becomes eligible for Medicare two years after the date s/he became disabled as determined by Social Security. For instance, Social Security might determine a person became disabled one year before they applied. It may actually have taken eight months for the application to be approved, so after approval the wait might actually only be four months.

Once the waiting period is over, an individual will receive a letter of notification of eligibility for Medicare. No matter what a person does next, s/he will automatically be signed up for Medicare Part A, which is the hospitalization portion of the insurance.

What happens next with the other portions and options of Medicare becomes the decision of the individual. This next section will summarize the various choices involved in obtaining Medicare.

Obtaining Medicare means making a choice between two different Medicare Medical Insurance systems: Original Medicare, and Medicare Advantage.

Original Medicare

Original Medicare works directly through Social Security Medicare and consists of Part A—Hospitalization; Part B—Doctors' visits and outpatient services; and Part D— Prescription Drug benefits.

Under this Original Medicare system you can choose any doctor who is "Medicare approved." About 80% of all doctors in the U.S. are Medicare approved. Most doctors affiliated with hospitals take Medicare patients. Doctors are paid a fixed amount for each medical service as determined by Medicare. They agree, under most circumstances, to accept the fee Medicare will pay. These fees are generally lower than what a doctor will charge privately on a fee-per-service basis. Yet doctors participate because so many patients are covered, or because of medical institutional imperatives.

Unlike a Managed Care system or HMO you can choose any doctor or specialist that you wish to see. There is no necessity for choosing an in-plan doctor, or needing a plan referral for a specialist. In many cases, you can go to a doctor yourself; in other cases you simply need your own doctor to say that a procedure or a visit to a specialist is "medically-necessary." This is one of the advantages of Original Medicare as opposed to Medicare Advantage; see below.

Medicare Supplement policies

Part A and Part B cover only 80% of covered medical costs. Hence a person would be required to pay 20% of most medical bills. To meet these extra costs, private insurance companies offer what are generically called Medicare supplement policies. These policies for a premium cost paid by you cover the 20% gap, as well as deductibles, and offer some extra services as well. To be effectively covered, one should, if possible, buy a Medicare supplement policy.  Under Medicare Parts A and B, with a Medicare supplement policy, most medical procedures and visits are covered.  Institutional nursing home care, except for skilled nursing care, is not covered.

Prescription Drug Coverage—Part D

The last part of Original Medicare is prescription coveragePart D. When you are accepted by Medicare, you will be given an opportunity to purchase, for a monthly premium, Medicare Part D prescription drug coverage from a private insurance company. You should do so if at all possible, since to do so at a later time incurs significant financial penalties. Some companies offer only one plan; other companies have different plans at different costs which offer a either decreased or increased benefit options.

Most prescription drug plans offer three levels of coverage. The costs can vary considerably amongst the Medicare contracted companies and by plan selected.

These plans use formularies (preferred drug and price lists) and a tier system, usually three tiers, with an additional top tier for specialty drugs (advanced treatments for illnesses like cancer or MS) which are paid at a determined percentage of cost. It is important to compare coverage for your routine medications under several company plans, because some plan formularies can be quite limited.

Co-payments can also vary by plan and increase by each tier, and those in the highest tier can be quite costly.  This is another important consideration or even challenge when doctors might like to try you on some of the newly released drugs.  Bring your formulary book with you to appointments, so you can determine whether you can afford a particular medication.

There is cap on the money spent by yourself and your plan towards covered drugs—this amount can change (in 2016, the cap was $3310), at which point, you enter "coverage gap" (a.k.a. a "donut hole").  You will then have to pay approximately the next $3,000 out-of-pocket. After this threshold is reached, you will obtain comprehensive coverage. Some "premier" plans provide some coverage within the "donut hole."

Paying for Medicare

Under Original Medicare, in addition to the cost for a Medicare supplement policy, Social Security deducts money from your Social Security check as a payment for Part B. When you are first offered Medicare insurance, you are given an option whether or not to take Part B. Some people who are insured on another policy or feel they cannot afford the deduction will consider not accepting Part B. However, it must be considered that there will be a heavy dollar penalty which increases with each month, should the person later want or need Part B. The same is the case with Part D. There is a premium for Part D. If you do not take Part D when it is first offered, again there will be a serious penalty should you want it or need it in the future.

Medicare Advantage

Unlike Original Medicare, which is administered through Medicare (Social Security Administration), Medicare Advantage plans are obtained through major private insurance companies. These plans roll Medicare Parts A, B, and D into one policy which you purchase for a certain amount per month. These are managed care plans of some sort, so you can only see permitted providers. Some of these plans are perferred-provider only (PPO), so the choice is wider, but the cost is more expensive. These plans may have a few more, and sometimes less, services than Original Medicare. You will need to check the policies and compare them carefully with original Medicare. These Advantage Plans also have deductibles and co-payments for most services, including major yearly deductibles for hospitalizations. Therefore, although the monthly premium may be less than a combined Part B, a Medex  policy and the premium for Part D under original Medicare, you may end up paying more after the one premium, co-payments and deductibles. These plans may also include Part D, depending on which plan you buy. The lower the premium the less coverage and vice-versa.

Medicare Advantage Plans make money by contracting with Social Security to pay for a portion your coverage, plus your monthly premium, plus deductibles and co-payments. You should compare costs, benefits, and access to physicians carefully before choosing one of the two Medicare approaches. Many insurance companies provide a variety of plans; again for a lower premium you receive less coverage and vice-versa.

State and Federal Medicaid Insurance for the Disabled

For those on Supplemental Security Income (SSI), Medicaid coverage from the date of acceptance is automatic. Medicaid includes prescription drug coverage. Medicaid is a comprehensive medical insurance program that covers most general hospital and medical procedures. It also covers nursing home care. There are no premiums, although there may be small co-payments (not so small to a cash-strapped patient).

However, health and medical care providers may choose not to participate in Medicaid, and a majority of doctors do not "take" Medicaid patients. Hospitals do take Medicaid. So if you rely on Medicaid, you must find doctors willing to accept the coverage.

If you are on a form of state general assistance, you will also probably be covered by Medicaid.

In many states disabled persons with other income (under a certain dollar amount), not eligible for financial assistance, may be eligible for "Medicaid only."  For instance, in Massachusetts, a disabled individual with income around $1,000 per month can receive Medicaid. For persons receiving more income, there is a deductible.  Residents of Massachusetts may receive benefits under the Massachusetts Comprehensive Health Care Law

Medicare and Massachusetts health insurance benefits under the Affordable Care Act

With the implementation of the federal Affordable Care Act (the federal health care law), it is useful to review and update some of the eligibility requirements for medical benefits under Medicare and, in Massachusetts, for Medicaid and the Health Care Safety Net.

Several of the eligibility cut-offs have been raised, so disabled patients may be newly eligible for health insurance benefits.


The MassHealth/Medicaid program provides coverage for hospital, doctor and prescription drug costs for disabled patients with a low income and minimal assets.

The current MassHealth/Medicaid program is being expanded as part of the federal Affordable Care Act program and the qualifying income limit is being raised. First, most of the different types of MassHealth programs are being eliminated and brought under one program. In 2015 the new monthly income eligibility cut-off for MassHealth will be $1274. There will also be a ceiling on assets.

Medicare Savings Program—QMB

If you are receiving Medicare Part B (or wish to sign-up for it), and if your monthly income is less than $1333 if you are single, or $1790 if you are married and living together, then your Medicare part B premium will be paid for you. (Also, your income can be higher if your spouse works.)

To qualify for this program your resources (such as money in a bank, stocks or bonds) should not total more than $7,160 if you are single, or $10,750 if you are married and living together. (Some states allow you to have more.) Also, your house, car and up to $1,500 per person in burial expenses do not count as resources.

To apply for the Medicare Savings Program contact your State Medicaid Program. To find out how to contact your local Medicaid office, go to www.medicare.gov and select your State in the "Find someone to talk to" box.

Extra help with Medicare prescription drug costs

If your yearly income is less than $17,505 if you are single, or $23,595 if you are married and living together, then you can receive extra help to pay your Medicare prescription drug plan costs. Your income can be higher if you or your spouse works, other people who live with you rely on you for support, or you live in Alaska or Hawaii. (To qualify for this Extra Help you must enroll in, or be enrolled in, a Medicare prescription drug plan.)

Your resources (such as money in the bank, stocks or bonds) should not total more than $13,440 if you are single, or $26,860 if you are married and living together. Certain things you own, like your house, car, life insurance, and up to $1,500 per person in burial expenses do not count as resources.

To get this Extra Help, contact the Social Security Administration. You can visit www.socialsecurity.gov/i1020 to apply online, or call the SSA at 1-800-772-1213. To apply for a prescription drug plan call 1-880-633-4227.

MassHealth Safety Net

MassHealth Safety Net (formerly the Free Care/Low Cost Care Program) is a Massachusetts program that is available for those with limited income who have no medical insurance or only partial insurance, as well as for people with higher incomes who have large medical bills.

The Safety Net coverage only applies to Hospital Bills or to community health clinics associated with Hospitals. If the Hospital has a prescription drug dispensary, then the Safety Net can cover the prescription drug cost.

The Safety Net program has an income eligibility standard, but no asset standard (savings, property, etc.). Those with partial medical insurance come under the Health Safety Net Secondary Program. The Secondary Program includes Medicare recipients. The Safety Net annual income eligibility cut-off is $22,980.

There are some disqualifications for the Safety Net: If a person's income is low enough to qualify for MassHealth, but s/he did not enroll, then the Safety Net is not available; also, if a person had a MassHealth premium, but didn't pay it, then the Safety Net would not be available.

There is also a MassHealth Safety Net Partial for those with annual incomes from $22,980 to $45,960 if there are medical bills amounting to more than 10% of their income.

Medicare and the Affordable Care Act

The Affordable Care Act program functions under the "individual mandate" which requires that people obtain medical insurance. However, a person covered under Medicare is deemed to have "minimally acceptable coverage" and is not affected by the mandate or any penalties. Even those who have only Medicare Part A (Original Medicare) are deemed to have acceptable medical insurance and are not required to obtain additional coverage under the Affordable Care Act.

The Affordable Care Act does not offer Medicare supplement insurance (Medigap/Medex) or Part D (prescription drug) plans.

Other state and federal health insurance programs

Some states have individual health insurance programs for working disabled adults. In Massachusetts such a plan is called CommonHealth. For a small monthly premium and a minimum number of working hours in a month, an individual may purchase a reasonable health insurance plan. Other states may have similar plans.

Free or sliding-scale care is mandated by federal law for hospital costs, including for doctors or health centers attached to hospitals. Depending on your income you may be eligible for free care. If you are over the eligibility amount, your cost may be reduced.

New State Health Care Laws

Some states are beginning to establish forms of universal health insurance or partial insurance. In Massachusetts, the Commonwealth has set up a mandatory universal system of coverage. All residents, unless they are covered by another "acceptable" health insurance policy, are required to participate under a system of penalties embedded in the state tax system, unless the state determines the person cannot "afford" the insurance.

In Massachusetts there are two policies. Commonwealth Care is low or no-cost health insurance for people who qualify. Prescription coverage is included. For those above the income limit, Commonwealth Choice offers many options from brand-name health plans.

Massachusetts residents can get up-to-date information on these programs from the Commonwealth Connector

So, a disabled person with or without Social Security must look at the various options and determine what health insurance coverage is within their means and is best suited to their needs.

Patient Assistance Programs for prescription drugs

Patient Assistance Programs (PAP's) are programs established by drug companies that provide free or low-cost drugs to individuals who are unable to pay for them. These programs may also be called charitable drug programs, indigent drug programs or medication assistance programs. Most prescribed drugs are available through these programs. All of the major drug companies offer patient assistance programs, but each company has its own eligibility requirements and application procedures.

To utilize these programs for your prescriptions, you must first find out which company manufactures each of your prescriptions. You then apply to each company for the specific medication(s) the company manufactures.

You must meet program income eligibility requirements, which may differ somewhat from company to company. Generally, individuals must have an income below 200% of the federal poverty standard, must be a U.S. resident or citizen, and must not have other prescription drug coverage.

There are two websites that provide comprehensive information on which medications are manufactured by each company, as well as how to obtain applications for each company's program. The Partnership for Prescription Assistance at www.pparx.org —phone number: 1-888-477-2669, will allow you to download company applications.

A second program, RxAssist—a Patient Assistance Program Center, www.rxassist.org —phone number: 401-729-3284, also provides comprehensive information and assistance. You must fill out each application carefully, according to instructions. Some companies require that the physician's office obtain the application form by calling the company.

After the form is completed and submitted, the company will decide if you are eligible. If an individual is approved, the medication may be sent directly to the patient, to the doctor's office, or to the patient's pharmacy—depending on the program. Most medications provided are free, but some companies require a small co-payment.

Each company will have a different procedure for refills. These programs are extremely helpful for those who have no other means to pay for their prescriptions.

Delivery of medications

Some pharmacies may have home delivery services. If you are too sick to pick-up your medications, your local taxi company will often pick-up and deliver your medication for a fixed cost.

Primer for Social Security Disability Benefits

What if I have no long-term disability insurance of my own or through an employer?

Very often a disabled individual is working at a job without Long-term Disability (LTD) benefits, or has been out of work and is no longer covered by an LTD policy. Under these circumstances, what benefits are available for financial assistance, medical insurance, and other needed help?

The primary alternative to long-term disability insurance for financial and medical insurance is Social Security Disability Benefits. These benefits are provided through the Federal Social Security Administration.

The Massachusetts CFIDS/ME & FM Association has written a comprehensive booklet, The Massachusetts CFIDS/ME & FM Disability Book: How to Apply for Social Security Disability Benefits If You Have Chronic Fatigue Syndrome (CFS/CFIDS) . The content in the booklet also generally applies if you have fibromyalgia (FM), or even multiple chemical sensitivities (MCS). This article outline some major elements of the Social Security program, but the booklet will provide you with the needed comprehensive information.

What are Social Security Disability Benefits?

There are two Social Security Disability Programs—Social Security Disability Insurance (SSDI) and Supplemental Security Income (SSI).

Both Social Security programs have the same standard of disability outlined below. However, they differ in their financial eligibility standards and the amount of assistance they each provide.

Financial eligibility standards

Social Security Disability Insurance

A person qualifies for SSDI if they have worked and paid Social Security payroll taxes for a sufficient period of time prior to becoming disabled. Generally, if a person is over 30 they would have had to have worked 20 quarters (5 years, not necessarily consecutive) over the 10 year period prior to becoming disabled. You should check with your Social Security office to see if you have the necessary number of quarters. If you are lacking one or two quarters, check with the Massachusetts CFIDS/ME & FM Association; sometimes there is a way to achieve the necessary number. Our Social Security Disability booklet will give you a full explanation of this category of eligibility.

There are no income or asset requirements for SSDI. You could be getting investment income or other forms of income for which you do not work. Also you can have assets of any amount.

The monthly disability payment will depend on how much average earnings or salary you had when you worked. If you worked part-time you will receive less. The amount may range from a few hundred dollars to over $2000 a month. The average amount is about $1,000-$1200 per month for an average yearly earnings of $20,000-$25,000. Check with your Social Security Office to obtain an estimate of your monthly cash benefits.

Because Social Security Disability payments are often not enough to pay for all living costs, especially housing costs, many disabled persons find it necessary to apply for other forms of assistance, especially housing assistance, if they have no other source of income. These other forms of assistance are discussed in the sections Housing/Other Essential Needs and Disability Resources.  Besides a financial payment, SSDI also provides Medicare medical insurance but there is a waiting period of 2 years from the date of disability. The Social Security medical insurance programs will be discussed in Medical Insurance

Supplemental Security Income

Often people who are chronically-ill and disabled have not worked for many years, or have only worked part-time, or even worked at employment where they did not pay Social Security payroll taxes, so they don't have the "quarters paid in" to qualify for SSDI.

For people who do not have the required work credits and are disabled, SSI may be available. However, SSI is a program that has tough income and asset requirements. There is an income ceiling that a person can have—that is income from all sources. The income amount is the amount of SSI monthly payment, which varies by state. In Massachusetts the amount is somewhere in the area of $600-$700. (Check with your local Social Security office for the exact figure.)

If you have income from any source(s) above this amount you will not be eligible. This includes income from a spouse. And any income you receive from SSI will be deducted from the little other income that you have. However, if you do qualify for SSI, you will get Medicaid, a comprehensive medical insurance plan, immediately. (See Medical Insurance for some details).

You also will probably be eligible for food stamps and fuel assistance. Also there is an asset limit for SSI. You cannot have assets of more than $2,000. You may have a car and a house that you live in. Call Social Security for more details. If your SSDI amount of monthly income is under the SSI payment limit, you will be able to collect from both programs. SSI will supplement your SSDI up to the SSI limit. You apply for SSI in the same way as SSDI.

Required level of disability

The term "disabled" under Social Security regulations means that: a person is unable to do any work, even part-time, sedentary work on a predictable basis, and this condition has lasted or is expected to last at least a year.

This definition is termed "permanently and totally disabled". Under this definition a person is unable to perform any "substantial, gainful activity." (This is a more encompassing standard than many long-term disability policies, which may allow for some level of work.)

The key phrase for many disabled patients is being able to do any work on a "predictable basis".

For example, especially in the case of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or fibromyalgia (FM), a person might be able to work 4 hours today on a computer, and 4 hours tomorrow on the phone, but then be unable to work for 3 days due to a relapse. This person would be considered disabled by Social Security. However, if a person could work 5 hours a day, 3 or 4 days a week on an ongoing, predictable schedule week after week, month after month—then the person would not be considered disabled.

Applying for Social Security Disability

To apply for Social Security Disability benefits, you simply call your Social Security office and state that you are disabled and need to apply. You should ask that an application be sent to you in the mail and should also request a date for a telephone interview. You should fill out the application prior to the telephone interview, so that your answers will be well-considered and clear.

One date of importance is the date you became disabled—that is you stopped being able "to do any work, even part-time sedentary work, on a predictable basis." You may have been out of work for some period of time. Give the earliest date you fit this definition. You will also be asked when you first became ill. Give the date as requested—this may have been many months or years before you became disabled.

When you are interviewed for your application, make sure you communicate just how ill and disabled you normally are. If you have been having a few good days, you may be feeling hopeful and therefore tend to understate the severity of your illness. Most people want to be working and are ambivalent about being "disabled."  As a result, they will express themselves to Social Security as if they are less ill than they actually are. Moreover, some patients go into a job interview mode and "put their best face forward."

If you do not communicate to Social Security just how severely and chronically ill you are, then Social Security cannot know—and therefore has no good reason to grant benefits. If truthful, patients should think first of when they are having a bad day or a bad week in order to balance their presentation.

Social Security may have an application online. If possible it's best to fill out paperwork off-line, since then you can take time to consider and answer questions. A formal telephone interview is best, but if you are asked to be interviewed in person, then you must do so, unless you can persuade Social Security otherwise.

Applying for Social Security Disability can be a daunting and sometimes an extended process. Our Social Security Disability booklet Mass CFIDS/ME & FM Disability Handbook: How to Apply for Social Security Disability Benefits if You Have Chronic Fatigue Syndrome (CFS/CFIDS) will arm you with the knowledge and persistence to navigate the process.

There are normally three stages before a claim is approved, although sometimes a person can be approved at stage one or two. The better and more complete your medical documentation, the higher the chances are for a quicker approval.

But you should not give up if you are disapproved at stage 1 or 2. Ninety percent of people who are approved are approved at stage 3. Most people with ME/CFS or FM who are truly disabled are accepted, although there is variation depending on the region of the country you live in.

The waiting period

The typical waiting period for Social Security approval of an individual's claim may take many months. If a person has little or no savings or assets, he or she may not have sufficient funds to meet their living expenses. Some people may have family or friends from whom to seek help.

There are some assistance programs that may help to bridge the waiting period "gap".

There is a six-month waiting period from the date of disability before one's funds begin to accumulate. Once an application is approved, there is usually a check for retroactive accumulated funds.

However, Social Security has a limit on retroactive funds paid to an older disability date. But there is no waiting period before you apply—you should apply as soon as you are no longer able to work.

Importance of medical documentation of your disability

The key to obtaining either SSDI or SSI is the full medical documentation of your disability by one or more MD physicians.

Your doctor must be willing to support your claim and provide the necessary medical reports, physician's office notes, medical records, etc.

Working while applying for Social Security Disability

Many people who have no other income or resources ask, "How can I meet my expenses while I wait for Social Security? Can't I work just a few hours a week?"

In general, any work during the application period is viewed suspiciously by Social Security as possible "substantial gainful activity". (This phrase means you are not disabled.)

The best advice is not to work at all while applying for Social Security. Any more than 3 hours a week can put your application in some jeopardy. Even the 3 hours may be questioned.

After you've been accepted, the rules change, and you are allowed to work a certain amount without immediately jeopardizing your benefits. (The rules for this system are complex, and if you are granted benefits you must learn them thoroughly before doing any work, so that you will know what can happen to your benefits under various conditions of work/earnings).

If you have to work a few hours a week to make ends meet, you should consult an advocate or attorney who knows about Social Security disability for an opinion about how your work will affect your application.

What programs are available to an individual with few or no resources during the Social Security waiting period?

General Assistance

"General Assistance" is a generic term that has different specific names in different states. In Massachusetts, the assistance program is Emergency Aid to Elderly, Disabled and Children (EAEDC). It is available from the State Department of Transitional Assistance. (In most states it is the Public Welfare Dept.)

Depending on the state, you obtain a form from your doctor stating that you are disabled for a specific number of months. This program is only for people with almost no income or assets.

In Massachusetts, the limit on monthly income is about $300, and this is also the monthly payment. There is also an asset limit, which may or may not include a car. The program includes immediate Medicaid/Mass. Health insurance. You should be eligible for food stamps and fuel assistance.

Unemployment Compensation

Sometimes when a person can no longer work, s/he is laid-off or terminated. Given that Social Security can take months to be approved, the individual may instead seek unemployment benefits. Generally, a person who is laid-off is eligible.

A person who is terminated may be eligible if the termination is not his/her fault, and the employer does not contest the benefits.

A person who resigns is generally not eligible, unless s/he can show the resignation to be compelled. If you have resigned, you should check carefully as to your rights to unemployment compensation.

The issue of whether an ill or sick person can receive unemployment benefits is not a simple one. To be eligible, a person must be willing and able to work—and be seeking work.

Unemployment compensation, under some circumstances, allows a partially ill person to obtain benefits; there is some leeway for limited, partial disability. Perhaps you can work part-time. You may need to check with a disability lawyer.

However, you cannot apply for Social Security disability while receiving unemployment benefits, since your receiving unemployment benefits stipulates that you are able to work, while the criterion for receiving disability requires you to state you are totally unable to work.

Workman's Compensation

A number of patients with ME/CFS, FM, multiple chemical sensitivity (MCS), and toxic exposure apply for Workman's Compensation. To be eligible, you must be able to show that an illness or injury was caused, or probably caused, by your employment. ME/CFS, an immune and neurological disorder, is sometimes caused by extreme work stress or exposure to toxic materials. If you believe that your illness was caused by your job, you should check with a workman's compensation attorney familiar with the type of illness you have. The workman's compensation procedure requires perseverance.

Disability Retirement

Various public employees, both at the state and local level, are not covered under Social Security. The local or state governments have disability retirement systems.

If you are clearly disabled and can't work, you should determine whether you are eligible to take a disability retirement. Most jurisdictions require a certain number of years worked—or to be "vested"—often ten years.

For instance, the only "disability retirement" for those under the GIC Commonwealth of Massachusetts retirement plan is the raising of the "age" of the applicant to 55, if you are under the age of 55. This means retirement benefits (if you are vested) will be computed based on the creditable years worked with the system's percentage multiplier for someone of age 55. If you are age 55 or over, you must take normal retirement.

You will likely need the advice of an attorney to guide you through the disability application process. If you are in a labor union, you might be able to find an attorney familiar with obtaining disability retirement through your union; however, you may have to educate him or her about ME/CFS or FM.

You may want to hire a private attorney who knows about the illness and the retirement system. Usually you will have to obtain very thorough medical documentation to persuade a medical board and/or the retirement board of your condition.

More resources

Attorney Fee Agreements for Disability Claims: What is a Fair and Legal Agreement?

Disability Insurance Claims: General Information

Major 2014 Social Security Ruling Establishes New Standards for Documenting CFS/ME Social Security Disability Claims/Reviews

Obtaining Social Security Disability with CFS 

Social Security Disability Benefits, Fibromyalgia and CFIDS: What you don't know could be fatal to your claim! 

The Reasons for Patients to Join Together in Patient Associations

Hello, fellow sufferers and fellow human beings. We do suffer—some of us more than others. But we are human beings, despite our suffering. When the suffering lessens, we feel more human again, more ourselves, and we are thankful. When our suffering is intense, we hold on knowing that it will usually lessen.

This is what we have in common—unfortunately, our suffering; and fortunately, our humanity. Part of our humanity is our compassion for another patient who is suffering (which comes out of our own experience). And when we have a little energy in ourselves to console and understand another patient, the benefit to that person cannot be underestimated.

A second characteristic we possess is determination. Sometimes the determination is weak, sometime it is stronger. But the determination is to somehow keep going. And then as we become part of the patient movement, even if it's just by keeping in touch with other patients or by being a member of Massachusetts CFIDS/ME & FM Association, our determination is directed not just toward day-to-day survival, but toward, in some small way, doing something about ME/CFS.

As we inform ourselves about ME/CFS, and as we think about what, within our limits, we can do, our effort is to both relieve suffering and. to help find the causes and effective treatments for ME/CFS. Such efforts have to be an effort of many people, not just one person. For one person it's impossible. But with many hands turning the wheel, the wheel will slowly move.

So by joining together, we have worked, and can continue to work, wonders. We need to both do what little we can ourselves—and to then to persuade our society and government to provide the programs to relieve our suffering and to fund genuinely scientific research into the causes and treatment of the illness. Society should have an interest in doing this. Anyone can become ill. So it's like an insurance policy—everybody contributes knowing someday  s/he may need help. So in a way, by calling for and insisting upon help, we are helping our country and the world. (Even if sometimes they don't get it.)

And as you know, in our effort to help each other, Massachusetts CFIDS/ME & FM Association makes it possible for us to join together to accomplish what we could never accomplish alone. Massachusetts CFIDS/ME & FM Association gives us greater power to both help ourselves and to try to persuade the society and government to help both those who are sick with ME/CFS or FM and those who might become sick. Without Massachusetts CFIDS/ME & FM Association  and other organizations that work for patients, we would definitely be worse off.