published 1997
Getting Help
Index To This Chapter:
There are undoubtedly some advantages to having an exclusive, full-time, one-on-one relationship between the person with ALS and his caregiver. This kind of arrangement ensures that the person with ALS enjoys the comfort of home, has privacy and is taken care of by a constant companion who knows his moods and understands his needs. It may lead to a deepening of the emotional bond between the two. And it can save money.
However, as the disease progresses and the person with ALS loses more and more abilities, the demands upon the caregiver's time and energy become greater. Many primary caregivers receive little or no help from family members. The stress, both physically and psychologically, can become enormous. The caregiver may come to feel that he or she can't continue to handle this ongoing responsibility without some kind of support and assistance.
There's no reason why you, as the caregiver, should have to shoulder this responsibility entirely on your own. Nor should it be necessary to resort to the extreme option of consigning the person with ALS to a residential nursing facility, or nursing home, where full-time care can be provided. (This is certainly an option, but it's one that many people with ALS and their caregivers would consider a last resort.)
Fortunately, there are options that fall somewhere in between -- options that allow the person with ALS to remain at home while removing a portion of the load from the primary caregiver's shoulders. Most of these options come under the heading of "home care."
Home Care
FINDING AN AGENCY
Home care is a broad category encompassing various kinds of help brought into the home, some of it highly skilled, some less so, some highly specialized, some general in nature.
Look under "Home Care or "Home Health Care" in your phone book, or ask your doctor for a referral to a home care agency that he knows and trusts. Consult friends and relatives, hospital personnel, and the Health Care Service Coordinator at your local MDA office. Also see Resources.
If you have an Internet connection, try accessing the Web page maintained by the National Association for Home Care at www.nahc.org for information on locating home care in your area.
Take the time to make sure you find an agency that has a good reputation and provides the services you need at a reasonable cost. Some agencies are licensed by the state or accredited by national health agencies.
Ask if the home care agency is certified by Medicare and Medicaid. Even if the services you require aren't currently covered by Medicare or Medicaid, you can't be sure how circumstances may change in the future.
Keep in mind that it's possible for an agency to choose not to be certified but still maintain very high standards.
FULL-SERVICE AGENCY
If a home care agency is "full service," it may be able to provide a variety of professional services including: evaluation and development of a care plan; nursing, medicating and monitoring; nutrition counseling; rehabilitative and occupational therapy; social services such as help in accessing community programs, evaluation of your financial situation, and emotional counseling; and personal care in such areas as hygiene, dressing, bathing and transferring.
Agencies can also provide medical equipment and supplies such as oxygen, hospital beds, wheelchairs and monitoring devices.
Be sure you ask what services are and aren't included. They vary from one agency to another. Be sure your contract spells out what's covered.
Using an agency is more expensive than hiring people on your own, but it helps ensure that the people coming into your home have been professionally scrutinized.
SUPPORT-CARE AGENCY
If you feel you don't require skilled medical support, you may be better off using a support-care agency. Such an agency generally provides aides to help with personal and household care, but not nursing care. This may be considerably cheaper than using a full-service agency.
HIRING YOUR OWN HELP
A different option is to hire an independent home care worker, sometimes called a personal care attendant or personal assistant. In this case, the worker is hired directly by you, with no agency involved.
Among the advantages of hiring a personal attendant yourself are that, when it comes to hours and the kind of tasks performed, the personal care attendant may be more flexible than someone from an agency. You have much more control over the job description and must be very specific in outlining job responsibilities. Also, you may get more hours of care for your money than if you were paying an agency as a go-between. However, don't expect to get trained help. Many of the people applying for such positions don't have professional health care backgrounds. You'll have to train and supervise them.
For many people with disabling conditions who have no family support, the personal attendant option has kept them from having to go into a nursing home.
Personal attendants are obtained through a variety of means, ranging from help wanted advertisements to word-of-mouth. When no agency is involved, you must take extra precautions to check the background of an applicant. Although it's certainly not the norm, there have been cases of people with disabilities being robbed or abused by attendants. You may want to contact an Independent Living Center in your area for suggestions on interviewing and selecting personal care attendants.
Have the applicant fill out a detailed job application (available from most stationery stores). Verify all the information by phone. Consult your local police department and the county clerk's office for information on any criminal charges and convictions.
RESPITE CARE
Respite care refers to a service in which another person takes the role of caregiver for a short time or simply provides companionship for a few hours, allowing the primary caregiver to attend to other tasks or take a much-needed break.
Ask at places of worship or other community centers to see if they have a volunteer pool that offers respite care as a free service. Even if it's only for a few hours a week, the prospect of having some time off can make a critical difference for the primary caregiver.
VISITING NURSES
Skilled medical care and non-skilled care are available through Visiting Nurses Associations of America, with various payment options. Call (800) 426-2547 for more information.
Nursing Homes
A nursing home, or residential nursing facility, is an option that may be considered, particularly in the later stages of ALS and if you're unable to provide physical care. There are many such institutions that are well-maintained and provide compassionate, quality care. This option has the advantage of ensuring that round-the-clock professional care will be available, which can be reassuring, especially when breathing and feeding complications develop in ALS.
But nursing home expenses can be enormous. What's more, to many people who are elderly or have debilitating conditions such as ALS, entering such an institutional setting is greatly undesirable, a last resort.
In a nursing home, the person with ALS can feel isolated from the community and cut off from social interaction. He may feel that he has little or no authority over the people providing the care, since they are answerable to the facility managers, not directly to him. Separated from family and friends, he may be much more likely to lose hope.
If a nursing home becomes necessary, it's crucial that friends and family take extra measures to help the person with ALS maintain that feeling of connection to the community and the world outside.
Hospice Care
This refers to a kind of care provided to people in the last stages of severe illness. (See Hospice.)
Governmental and Other Financial Assistance
In addition to psychological and physical stresses, financial worries may place a great strain on both caregiver and patient. Unfortunately, expenses for ALS can be extreme, especially in its later stages when total care becomes necessary.
There are a number of programs, mostly administered by the government, that can help alleviate this situation. You should look into all of them to see which pertain to your situation. These resources exist to help people, so don't hesitate to use them. The services you end up using may not be the same ones used by someone else in an ALS care situation; each situation is unique.
SOCIAL SECURITY DISABILITY INSURANCE BENEFITS
This is a program administered by the Social Security Administration. To qualify, the person you are caring for must have a disabling condition that prevents him from working, and the condition should be expected to last at least 12 months. The person with ALS must be under 65 and have paid a qualifying amount into the Social Security system throughout his working years.
If these conditions are satisfied, he should be eligible for Social Security Disability Insurance Benefits. The benefits will come in the form of a monthly check and can continue indefinitely, or until the person is able to work again. At age 65, disability benefits turn into retirement benefits.
You should sign up at any Social Security office as soon as the diagnosis of ALS is made. Benefits won't begin until six months after the onset of the disability. To make sure your checks arrive as quickly as possible, bring all the employment and medical forms you can find when you apply for benefits, including W-2 forms and doctors' addresses and phone numbers.
After two years of receiving disability benefits, the recipient will automatically be enrolled in Medicare.
SUPPLEMENTAL SECURITY INCOME
Even if the person with ALS has never worked, he may be entitled to Supplemental Security Income. SSI is a monthly benefit paid to people who are aged, disabled or blind and who have limited income and resources. When applying at your local Social Security office, bring your Social Security number, birth certificate or proof of age, as well as information about your home and your medical care.
People who receive SSI benefits are often eligible for food stamps and Medicaid, too. It's possible to receive both Social Security Disability benefits and SSI benefits at the same time.
Contact your local Social Security office for more information, or call (800) 772-1213.
PRIVATE MEDICAL INSURANCE
Many medical insurance policies have a cap, or maximum amount, which means that the policy will only be useful in covering the costs of ALS until a certain total amount of money has been spent. You may wish to look into long-term care insurance, although limitations and exclusions may make it hard to obtain satisfactory coverage of this kind.
MEDICARE PART A
Medicare refers to health insurance administered by the federal government and available to qualifying individuals over 65, or those under 65 who have a disability. A person qualifies for Medicare if he has received Social Security benefits for 24 months.
If you qualify, you don't have to pay any premiums to be covered by Medicare Part A, which helps pay for care while you're in the hospital and for related health care services after leaving the hospital. This includes partial coverage for hospice services. Certain deductibles and coinsurance amounts apply.
Generally, the coverage that Medicare provides for home care and nursing homes for conditions like ALS is limited to a short period of time and skilled nursing care only. Unfortunately, this leaves uncovered various kinds of ongoing, non-medical assistance that can be very useful in caring for a person with ALS.
MEDI-GAP INSURANCE
This term refers to private insurance policies that are generally purchased by individuals over 65 who wish to supplement the coverage provided by Medicare.
MEDICARE PART B
While Medicare Part A costs nothing, in order to be covered under Medicare Part B, you must elect to pay a monthly premium (the premium is tax deductible as a medical expense). This B portion of Medicare helps pay doctor bills and other approved medical services.
For more information on Medicare, call your local Social Security office, or write to Health Care Financing Administration, Inquiries Staff, Room GF-3, East Lowrise Building, Baltimore, MD 21207.
MEDICAID
Medicaid, also known as the Medical Assistance Program, is a state government-run program to help cover medical costs of people with low incomes. Individuals with higher incomes may be eligible if their medical expenses exceed a given percentage of their annual income.
Medicaid benefits do vary from state to state, but coverage for long-term care is usually more extensive than that provided by Medicare. It may provide coverage for home care and nursing home care for an unlimited time period, and includes non-medical as well as medical care.
The catch is that you may not be eligible for Medicaid until nearly all of your personal assets have been depleted by the cost of caring for ALS.
For more information on Medicaid, call your local state welfare office, or write to Health Care Financing Administration, Inquiries Staff, Room GF-3, East Lowrise Building, Baltimore, MD 21207.
PROGRAMS FOR MEDICARE BENEFICIARIES WITH LOW INCOMES AND MINIMAL ASSETS
Each state is required to offer, through its Medicaid program, two programs that provide additional assistance to those who receive Medicare benefits. The Qualified Medicare Beneficiary Program helps individuals whose incomes are at or below the national poverty level. The Specified Low-Income Medicare Beneficiary Program helps individuals whose incomes are slightly higher than the national poverty level. Both programs can help pay some Medicare-related expenses that otherwise might have to come out of the beneficiary's pocket.
HOUSING-RELATED LOANS
If you need to make physical adaptations to your home because of a disability, you may be eligible for a Title I Home Improvement Loan insured by the U.S. Department of Housing and Urban Development (HUD). The loan can be used to remove architectural barriers, hazards or inconvenient features in the home.
For more information, contact your nearest HUD office, or write to the Assisted, Elderly, and Handicapped Program, Department of Housing and Urban Development, 451 7th St. S.W., Room 6116, Washington, DC 20410.
TAX BENEFITS
Many medical expenses, from doctor visits to X-rays to home care to the cost of purchasing a wheelchair, may be taken as tax deductions. You must use Form 1040, Schedule A, in order to deduct. Keep in mind, though, that your total medical care expenses must exceed 7.5 percent of your adjusted gross income before you can qualify for federal income tax deductions.
In addition to deductions, people with disabilities may, under certain circumstances, receive a tax credit for child and dependent care expenses (see IRS Publication 503) or qualify for the Credit for the Elderly or Disabled (see IRS Publication 524). You can order free tax forms by calling (800) TAX FORM.
MDA
The Muscular Dystrophy Association (MDA), a voluntary health agency and the world leader in the fight against ALS for over four decades, has invested more than $100 million in ALS research and services.
At MDA's more than 200 hospital-affiliated clinics and 14 research and clinical centers devoted exclusively to ALS, people with ALS receive diagnosis and follow-up care, including such services as: clinical examination; muscle biopsy; physical, occupational and respiratory therapy referral; and flu inoculation.
In conjunction with this medical care, MDA provides many other direct services, including: assistance with purchase and repair of wheelchairs and leg braces; ALS support groups; and transportation assistance to the nearest MDA clinic. Many local MDA offices also maintain equipment lending programs.
It's MDA's policy to assist with payment only for those services authorized in its program that aren't covered by private or public insurance plans or other community resources.
Speak to the Health Care Service Coordinator at your nearest MDA office for details about the Association's services. In addition to helping you obtain MDA services and various MDA publications about ALS, the coordinator can provide information and advice on utilizing the various other resources mentioned in this guide. "MDA Local Offices".
Drug Assistance Programs
As of Jan. 1, 1997, one drug for ALS had received government approval and several others were under development. Your doctor or the Health Care Service Coordinator at your local MDA office should have information on programs that assist consumers with the financial burden of purchasing drugs for ALS, as well as information on early access programs for drugs that haven't yet been approved for general use.
Since 1987, the National Organization for Rare Disorders (NORD) has been helping financially needy individuals obtain necessary prescription drugs through the medication assistance programs it administers in conjunction with pharmaceutical companies. NORD also administers early access programs for yet-to-be approved drugs.
Family and Medical Leave
If you're holding down a job in addition to your caregiving duties, or if the person you're caring for who has ALS has a job, you should be aware that, under the Family and Medical Leave Act of 1993, an individual may be entitled to take up to 12 weeks of unpaid leave without fear of losing his job. Both the person with ALS and a family member who takes care of him may be able to take time off from work under this law.
In some cases, the employee who is taking leave must provide 30 days advance notice when the leave is foreseeable, and an employer may require medical certification to support a request for leave due to a serious health condition.
Look in your telephone book for the nearest office of the Wage and Hour Division, usually listed under U.S. Government, Department of Labor, Employee Standards Administration, to obtain more information on the Family and Medical Leave Act.
Other recent legislation makes it possible for people to keep their health insurance even if they leave their jobs.
Veterans
If your loved one with ALS is a military veteran, he should apply to the nearest Department of Veteran Affairs to find out about programs available to veterans with disabilities.
Other Programs
In each state, the following programs are available: Vocational Rehabilitation Program, which assists eligible people with disabilities to achieve suitable employment; Supported Employment Program, which works with individuals with severe disabilities who require ongoing support services to enter or maintain competitive employment; and Independent Living Centers, which focus on working with people with disabilities to enable them to live independently in the community and at home. Ask your local MDA office for information about these programs.
If you think you may require legal help, you should be aware of the Protection & Advocacy System (P&A) and the Client Assistance Program (CAP), which are mandated by the federal government to help protect the rights of people with disabilities. P&A and CAP services vary from state to state, so you'll want to ask your MDA Health Care Service Coordinator about these programs and how you can contact the nearest P&A or CAP office.
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