This section will summarize major available needs programs for income-eligible disabled persons:
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.
In Massachusetts, there is an excellent website Mass211 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.
To get connected to the help you need where you live, you 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. Besides Massachusetts, it is available in 40 states and the District of Columbia.
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.
For those individuals who have difficulty meeting their mortgage payments, help is available. Go to Mass211 search page and search on "mortgages-foreclosure."
The state agency HomeCorps is under the Office of the Massachusetts Attorney General. It has a website and a telephone hotline 617-573-5333. As its website states, the purpose of HomeCorps is threefold:
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.
Many of the different programs are found by searching on the Mass211 website under the various suggested terms under Housing. A good resource is a booklet, "How to Obtain Housing Assistance," published by the Massachusetts Executive Office of Housing and Economic Development. You can also call the Executive Office of Housing and Economic Development in Boston to obtain a copy.
Another excellent resource are the Massachusetts Housing Consumer Education Centers throughout the state. The Boston Center is the Metropolitan Boston Housing Partnership at www.mbhp.org. Their telephone number is 617-425-6700.
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.
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 which meets certain specifications and standards. There will be a ceiling on the amount of monthly rent for the size 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 either the homeless or people in danger of becoming homeless. Vouchers are available in Massachusetts from both 8 Regional Non-Profit housing agencies and 112 Local Housing Authorities
Each of the three types of subsidized rental programs will now be summarized.
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 of the life in the development, is often specific to the particular development or the community in which it is located. Most public housing authorities have waiting lists, and an individual may or may not have a choice of which development they are assigned to. In many cities or towns in Massachusetts, elderly and disabled public housing developments may be more than acceptable places to live. 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 via the web link in the booklet "How to Obtain Housing Assistance in Massachusetts", given above. You may also call PHA Info: 1-800-955-2232.
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—the Department of Housing and Urban Development (HUD) federally-subsidized developments, and the Massachusetts Housing Agency state subsidized developments. 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.
You can obtain both the HUD list and the Massachusetts Housing list from these agencies in Boston. On the web, for HUD listings in Massachusetts by city and town, you can go to http://portal.hud.gov/hudportal/HUD?src=/states/massachusetts/offices . Or you can call 1-800-569-4287, and ask for the HUD list for Massachusetts. For the Mass. Housing list, call 617-854-1185, or go to www.masshousing.com .
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.
The federal government through H.U.D. administers this program. You will need to obtain program information as to income eligibility. Generally, under this program the tenant will pay between 30-40% of their income toward the total monthly rent. The voucher will pay the remainder. Both the Regional Non-Profit Housing Agencies and Local Housing Authorities are given section 8 vouchers to provide to eligible persons. "If you apply to any one of the regional non-profit agencies, your name will be placed on a statewide Section 8 waiting list maintained by the [Massachusetts] Department of Housing and Community Development. These waiting lists can be quite long...", but these lists are always open. (from "How to Obtain Housing Assistance in Massachusetts"). You can obtain applications at www.mass.gov/dhcd A list of Regional Housing Agencies in Massachusetts can also be obtained by calling 1-800-224-5124.
"You can also apply to any of the local housing authorities to find out how to submit an application. There is now a centralized waiting list in which 43 local housing authorities participate. You need only to apply to one of these authorities to be considered by all 43 authorities...You may also apply to each housing authority that does not participate in the centralized list." (From "How to Obtain Housing Assistance in Massachusetts"). Some local authorities may not participate in the section 8 program or their lists may be closed. For a recorded listing of authorities accepting applications call 508-778-7507, ext. 4.
Different agencies may establish somewhat different preferences, including local residency, individuals who are disabled and homeless, involuntarily displaced persons, etc. The individual should learn about these preferences when applying.
These state-funded voucher programs, again, are provided by both Regional Housing non-profits and local housing authorities (see above for phone numbers and web addresses.) The Rental Voucher program income eligibility standard is not to exceed 50% of the Area Median Income. Tenants pay between 30-40% of the monthly rent. Due to long waiting lists, the ability to apply is periodically frozen.
The Alternative Voucher Program was established specifically for disabled people under 60 years of age who are eligible to live in elderly/disabled state assisted public housing.
Income guidelines vary from year to year. AVP recipients pay 25% of their income toward the monthly rent. For more information on this program call 617-573-1150.
The City of Boston operates the Metrolist, "a centralized listing service of both rental and homeownership opportunities." Call them at: 617-635-3321.
Elderly persons can call the Statewide Elder Hotline at 1-800-882-2003 and the Massachusetts Dept. of Elder Affairs at 617-727-7750.
For the Disabled—The Citizens Housing and Planning Association's Mass Access Program helps people with disabilities find accessible housing. To search their registry, visit their website, or call 617-338-6665. Also the Massachusetts Office on Disability, 1-800-727-5608, and the Independent Living Information Center 1-800-462-5015 can provide information on housing for the disabled.
For the Homeless—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.
Another Housing option is Supportive Housing and Long Term Care. See Mass211. One program is Affordable Assisted Living which is housing with support services for low-income adults who cannot live on their own.
A second 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.
Please search on the various suggested categories under Food at Mass211.
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.
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.
Again, check the Mass211 website for a full listing of programs and agencies.
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.
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 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 low-income people with disabilities (ages 18-59, with no children in the household.) There is a waiting list for services, however people with "unmet nutritional needs" are prioritized. For information, call MRC at 617-727-1595.
Mass. Health (Medicaid) offers MassHealth Home Health Services—the program can provide home health aide care. Mass. Health also offers Senior Care Options—the program provides home health care and other social services.
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.
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. Call, 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.
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 have 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.
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 Ride—The 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.
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 impairment—which 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-effects—including relapse of substantial symptoms—so 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 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.
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 problems—including 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.