Social Security Disability Insurance (SSDI)
Supplemental Security Income (SSI)
Social Security income for children
Other government funding sources
People with ALS and their caregivers have paid taxes to the state and federal governments for many years, and an ALS diagnosis means it’s time to claim some of the benefits those taxes support. First, the person with ALS must choose between continuing to earn an income and taking advantage of government programs, which define disability as inability to work.
Some federal programs require that applicants not earn any income, and in some cases, have only minimal assets. See Resources at the end of this section, for where to apply and where to read about these programs in detail.
Many federally funded programs are directed at the state level, and each state’s program is different. Some state programs are more advanced than the federal legislation, but many are below federal guidelines. The information here is general. To find out what public programs exist in your state, go to caregiver.org and click on “Family Care Navigator.”
NOTE: Social Security, Medicare and other government programs described here may be changed by Congress at any time. Consult an adviser or the offices of these programs for the latest guidelines. Don’t sign up for any program before understanding the long-term implications. Other families in your MDA support group may be able to recommend a good adviser.
National Council on Aging BenefitsCheckUp, (202) 479-1200. Links to various federal and state benefit programs.
To qualify for this program administered by the Social Security Administration, a person must have a disabling condition that prevents working, and the condition should be expected to last at least 12 months. The person must be under 65 and have paid a qualifying amount into the Social Security system throughout the working years.
People with ALS who meet the qualifications are granted “presumptive” or automatic eligibility for SSDI benefits, meaning they should need nothing more than a doctor’s statement of diagnosis to prove qualification. The person will receive a monthly check indefinitely, or until able to work again. At age 65, disability benefits turn into Social Security retirement benefits. SSDI is available without regard to family assets or income.
Sign up for SSDI at any Social Security office as soon as the diagnosis of ALS is made or as soon as the person stops working. Benefits won’t begin until five months after disability status has been granted, and the approval process may take time. Bring employment and medical information, including W-2 forms, copies of doctors’ diagnoses, and their addresses and phone numbers for verification. It’s possible to apply for SSDI online or by phone. If the person you talk to doesn’t seem to understand or to be knowledgeable, go to the local Social Security office, or consult another adviser.
SSDI recipients with ALS can begin receiving Medicare Part A (with Part B optional (see right) as soon as they get SSDI.
Applying for Social Security Benefits Now a Little Easier for People with ALS, MDA/ALS Newsmagazine, June 2004
Social Security Changes Rules to Benefit Applicants with ALS, MDA/ALS Newsmagazine, September 2003
Nolo’s Guide to Social Security Disability: Getting & Keeping Your Benefits, by David A. Morton III, M.D., Nolo Press, 2006
Social Security Disability Insurance (SSDI), (800) 772-1213
SSI is a monthly benefit paid to adults of any age who are aged, disabled or blind and who have limited income and resources. People with ALS who have never been employed may be entitled to SSI. When applying, bring Social Security number, birth certificate or proof of age, as well as information about the diagnosis and your home and medical care.
People who receive SSI benefits are often eligible for food stamps and Medicaid, too.
Supplemental Security Income (SSI), (800) 772-1213
Benefits are paid to minor children when a parent who is eligible for Social Security becomes disabled or dies. The benefit depends on other family income; the child must be under 18 and unmarried; benefits may continue past age 18 for full-time students or those with disabilities.
NOTE: Some long-term care insurance policies state that Social Security or other income paid to youngsters can be subtracted from the income paid by the insurance to the parent.
Supplemental Security Income for Children, (800) 772-1213
"You can benefit from Medicare for hospice services, and payment for rental equipment, medications for pain and symptom control, visits by a registered nurse, home health aide, social worker, volunteers, etc., indefinitely as long as the person continues to decline over time. Not only does it make good sense financially, but also in terms of support for you and your family.”
Medicare refers to health insurance administered by the federal government; it’s available to people over 65, or those under 65 with disabilities. A person with ALS qualifies for Medicare as soon as SSDI benefits begin.
The Medicare beneficiary pays no premiums for Part A, which helps cover:
Certain deductibles and coinsurance amounts apply. It’s possible to buy into Part A if you’re over 65 but never paid Medicare taxes.
While Medicare Part A costs the consumer nothing, its coverage is generally limited to medically necessary hospital or hospice care. Many more services important to people with ALS are available under Medicare Part B, which requires payment of a monthly premium. Part B helps pay for:
Parts A and B both pay toward home health care under certain circumstances. For details, go to medicare.gov/publications and enter “10116” into the search box.
Medicare Parts A and B generally pay 80 percent for health care and equipment, so most people also carry a Medigap or supplemental policy to pick up the rest (see Help with health care and equipment costs). For conditions like ALS, Medicare coverage for home care, therapies and nursing homes is limited to a short period of time and skilled nursing care only. To get coverage for the ongoing services that people with ALS require, a doctor’s letter of medical necessity (see Help with health care and equipment costs) may have an impact
Insurance systems are based on an “acute care” model, geared to the needs of those with a temporary illness or injury who are expected to improve. With either Medicare or private health insurance, it can be difficult to get care for a chronic condition such as ALS. However, families who’ve dealt with this situation have found a plethora of solutions (see Help with health care and equipment costs).
Medicare has introduced Advantage Plans which allow a choice of HMOs, PPOs or other plans. These include Parts A and B of Medicare, and Part D is optional.
This newest Medicare benefit, which went into effect in 2006, is prescription drug coverage. It requires a separate application and enrollment, and sometimes charges a premium.
Programs for Medicare beneficiaries with low incomes
Each state is required to offer a Qualified Medicare Beneficiary Program and a Specified Low-Income Medicare Beneficiary Program to help Medicare recipients with low incomes; these may help pay additional health care expenses.
An Endless Fight for Essential Benefits, MDA/ALS Newsmagazine, October-November 2005
Medicare Covers Cough Device, MDA/ALS Newsmagazine, September 2003
Center for Medicare Advocacy, “Medicare Basics: A Guide for Caregivers,” (202) 293-5760
Centers for Medicare & Medicaid Services, (800) 633-4227
Medicare, (800) 633-4227
Medicare Rights Center, (800) 333-4114
State Health Insurance Assistance Program (Offers free one-on-one counseling and assistance to people with Medicare and their families.)
Medicare Part D Appeals: An Advocate’s Manual
This term refers to private insurance policies that can supplement the coverage provided by Medicare.
Medicaid, also known as the Medical Assistance Program, is a federal program that’s administered separately by each state, that helps cover medical costs of people with low incomes. Those with higher incomes may be eligible if their medical expenses exceed a given percentage of their annual income. Medicaid benefits vary from state to state, but coverage for long-term care usually is more extensive than that provided by Medicare. Medicaid may cover in-home and nursing home care for an unlimited time period, and includes nonmedical as well as medical care. Medicaid guidelines and eligibility requirements vary from state to state.
Eligibility is based on three criteria: care needs, income and assets. Earned wages, Social Security, disability insurance, retirement, pension and alimony all count toward the income cap for Medicaid eligibility. Assets include bank accounts, brokerage accounts, stocks and bonds, loans, annuities, and any resource of value owned jointly by applicant and spouse. To learn the rules of your state’s Medicaid program, visit medicaid.gov and select your state; or call your Medicaid agency. You also can call the Centers for Medicare & Medicaid Services (CMS) at (877) 267-2323.
Once you’re eligible for Medicaid, many states also cover physician, psychologist, rehabilitation, chiropractic, dental, laboratory and X-ray services, hospital visits, prescription drugs and prosthetic devices.
When Medicaid initially assesses a person’s assets to check for qualification, that “snapshot” determines how much can be retained by the unaffected spouse. An expert can advise on the details in your state and what assets are counted in the calculation. Do not transfer assets to other family members before consulting an attorney or benefits expert, as there are very strict guidelines for this process.
Medicaid Planning: Look Before You Leap, MDA/ALS Newsmagazine, November-December 2007
Centers for Medicare & Medicaid Services, (877) 267-2323
Medicaid, (800) 633-4227 (Or contact your state’s Medicaid office or department of health services.
Qualified Income Trust
There are a couple of ways to get around Medicaid’s income and asset limitations.
A Qualified Income Trust, also known as a Miller Trust, is an account in which you deposit enough income — earned, pension, Social Security, etc. — to reduce your qualifying income for Medicaid coverage of nursing home placement.
Placing funds into a QIT lets you qualify for Medicaid and receive benefits such as long-term care programs. The funds left in trust may be available to leave to the survivor.
A Qualified Income Trust: Keep Your Medicaid Eligibility, MDA/ALS Newsmagazine, April 2005
National Academy of Elder Law Attorneys, (520) 881-4005
"Every two years I had to fight our insurance all over again. I did my homework, research and wrote the most factual letters with the laws for disabled people, the most compelling letters I could, and sent them to everyone that had anything to do with my husband’s case. Our doctor called our insurance company and wrote letters and threatened to take it to the newspapers.
Every year, like a Cecil B. DeMille drama, the insurance would take it to the 12th hour and then inform us, ‘OK, for another two years your husband will get 16 hours of in-home RN or LVN vent-knowledgeable care.’
We were so grateful to the wonderful nurses that came into our lives for seven years. I am most grateful to the two liaisons that fought for [my husband] and also grateful to our doctor."
Cash and counseling
Another Medicaid program, called Cash and Counseling, gives cash instead of standard agency services to eligible individuals. The beneficiary then can decide how to spend the cash to cover disability-related expenses. It can be used to buy equipment, or pay for home care, or whatever makes the most sense for the individual. Beneficiaries receive counseling to determine the most effective use of their cash; hence the name of the program. At this writing, the program only is available in about 15 states on a trial basis, but soon may be expanded.
New Medicaid Program Gives Recipients Cash, Not Predetermined Services, MDA/ALS Newsmagazine, December 2003
Cash & Counseling, (617) 552-2809
Medicaid state waivers
Many states have waivers to the Medicaid program that cover services over and above regular Medicaid benefits. They may cover specific needs or provide enough care to allow the person to remain at home, or even pay family members to be caregivers.
Alternative Financing Program
This federal/state program grants low-interest loans to people with disabilities, their relatives or advocates in order to purchase assistive technology or services. People who don’t qualify for traditional bank loans may find AFPs more receptive to their applications.
Paying for Assistive Technology: Make Alternative Financing Work for You, MDA/ALS Newsmagazine, January 2007
Funding Freedom: Tech Loans Provide Alternate Financing, Quest, May-June 2006
RESNA (Rehabilitative Engineering and Assistive Technology Society of North America) Alternative Financing Technical Assistance Project, (703) 524-6686
National AT Technical Assistance Partnership
Family and Medical Leave Act
Caregivers and people with ALS can take advantage of the Family and Medical Leave Act of 1993 to hold onto their jobs. An individual may be entitled to take up to 12 weeks of unpaid leave to care for a close family member without fear of losing his or her job.
U.S. Department of Labor
ALS researchers have established that veterans of the Persian Gulf War in the early 1990s have a slightly higher risk of developing ALS when compared to other Americans of the same age. It’s one aspect of the phenomenon known as Gulf War syndrome (veterans of the Iraq War haven’t yet been studied for this effect). The suspected reasons involve environmental exposure interacting with particular genetic factors; the exact mechanism is part of the mystery still surrounding the causes of ALS.
ALS developed as part of the Gulf War syndrome isn’t clinically any different from other types of ALS. The Veterans Administration offers a Gulf War registry examination and other benefits for veterans.
If your loved one with ALS is a military veteran, he or she should check with the Department of Veterans Affairs to find out about programs available to veterans with disabilities. Programs may provide those qualified with outpatient medical services, in-home respite care, durable medical equipment, day services for vets and caregivers, lower-cost prescriptions and special assistance for veterans of the Gulf War whose ALS may be service-related.
Report Concludes Military Tie Deserves Further Study, MDA/ALS Newsmagazine, January 2007
‘Detox’ Enzyme DNA Links Genes, Environment, ALS, MDA/ALS Newsmagazine, August 2006
Gulf War Report Available Online, MDA/ALS Newsmagazine, January 2005
GulfLink Medical Information
National Gulf War Resource Center, (866) 531-7183
U.S. Department of Defense
Gulf War Veterans Helpline, (800) 749-8387
Gulf War Veterans Hotline, (800) 796-9699
U.S. Department of Veterans Affairs, Registry of military veterans with ALS, (877) 342-5257
Office of Geriatrics and Extended Care, (877) 222-8387
Paralyzed Veterans of America, (800) 424-8200
Independent living centers
Independent living centers (ILCs or CILs) exist in every sizeable city. They focus on enabling people with disabilities to live independently in the community and at home, and the staff usually knows about all types of resources for people with disabilities.
Independent Living Research Utilization Directory of Centers, (713) 520-0232
Independent Living USA
P&A and CAP
The Protection & Advocacy System (P&A) and the Client Assistance Program (CAP) are mandated by the federal government to help protect the legal rights of people with disabilities. P&A and CAP services vary from state to state. To find local offices, go to the National Disability Rights Network website and click on “Get Help in Your State.”
Muscular Dystrophy Association — USA
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Chicago, Illinois 60606
The Muscular Dystrophy Association (MDA) is a qualified 501(c)(3) tax-exempt organization.
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