 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 physical and psychological, 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
or she knows and trusts. Consult friends and relatives,
hospital personnel, and the Health Care Services Coordinator
at your local MDA office. Also see Resources.
Visit 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.
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.
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 (also see Resources).
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 nonskilled
care are available through Visiting
Nurses Associations of America, with various payment
options.
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 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’re
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
Hospice refers to a kind of care provided to people in the last
stages of severe illness.
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 circumstances. 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 case is unique.
Social Security Disability Insurance
Benefits
This is a program administered by
the Social Security Administration. Generally, to qualify,
the person you’re 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 must
be under 65 and have paid a qualifying amount into the Social
Security system throughout his working years.
Persons who have received a diagnosis
of ALS are granted "presumptive" or automatic
eligibility 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 five months after disability
status has been granted. 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.
In most cases, recipients of disability
benefits are automatically enrolled in Medicare after two
years. However, in 2001, Congress exempted people with ALS
from this waiting period. SSDI recipients with ALS now begin
receiving Medicare as soon as they get SSDI.
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.
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.
Under federal regulations, an employer’s
health care plan must include arrangements for continuing
an employee’s coverage for at least some period of time
after the employee leaves the job for reasons including
disability. You can elect to continue your health care coverage
under programs such as COBRA (named for the Consolidated
Omnibus Budget Reconciliation Act) at your own expense.
With proof of disability, you’re entitled to COBRA coverage
for up to 29 months or until you qualify for Medicare.
Your employer may also maintain
short-term and long-term disability plans for employees.
Your company’s Human Resources Department can explain these
benefits. The U.S. Department of Labor administers COBRA.
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 with ALS qualifies for Medicare as
soon as he begins receiving Social Security Disability Insurance.
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, nonmedical 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.
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 nonmedical 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.
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.
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).
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 $160 million
in ALS research and services.
At MDA’s more than 230 hospital-affiliated
clinics and 30 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 Services
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.
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 Services
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. Follow the
link to contact NORD.
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 or her 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.
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 Services Coordinator about these programs
and how you can contact the nearest P&A or CAP office.
Back to Table
of Contents
Previous section |
Next section |
