Parenting is hard work. But if you have a child with special needs, it becomes even harder. Get guidance here.
Here are some resources where you can look for this help:
People you know. For many people, family, friends, and neighbors are the biggest source of help. Talk with those close to you about the best way to get what you need. If you are physically able, think about trading services with a friend or neighbor. One could do the grocery shopping, and the other could cook dinner, for example.
Community and local government resources. Learn about the types of services and care found in your community. Health care providers and social workers may have suggestions. The local area agency on aging, local and State offices on aging or social services, and your tribal organization have lists of services. Look in the phone book under “Government.” If you belong to a religious group, check with its local offices. The group might have a senior services program.
Geriatric care managers.Specially trained people known as geriatric care managers can help make the daily life of an older person easier. They will work with you to form a long-term care plan and find the right services. They charge for this help, and it probably won’t be covered by any insurance plan. Geriatric care managers can be very helpful when family members live far apart. They will check in with you from time to time to make sure your needs haven’t changed.
Federal Government sources.There are many resources from the Federal Government where you can start looking for information on help. Some are on the Internet and only available with a computer. Federal Government websites are reliable. If you don’t have a computer, you might be able to find one at your local library or senior center. Or ask your local Area Agency on Aging. Perhaps a grandchild, niece, or nephew could search for you. Wherever possible, we have also given a phone number.
The Eldercare Locator has information on many different services for older people. They can give you the number of your local Area Agency on Aging. To use this service call 1-800-677-1116, or go to www.eldercare.gov on the Internet.
You can get suggestions to fit your own needs from the Medicare website at www.medicare.gov. Just click on "Long-Term Care" and then "Long-Term Care Planning Tool." Type in information about yourself (age, sex, and whether or not you are married), as well as your health problems and other needs. Very quickly it will give the type of help you should look for and general advice on how to find it and how to pay for it. You do not have to put in any personal information—not even your name or social security number.
The National Library of Medicine’s web site, www.medlineplus.gov, has a section “Home care services.” This contains links to information that might be of help.
The National Institute on Aging (NIA) has its Resource Directory for Older People. It has the names, addresses, phone numbers, and web site addresses for more than 260 government agencies, professional associations, and public and private groups that have information or help for older people. You can use it online or call 1-800-222-2225 for help finding the resource you need.
Once you have chosen some service providers, you might be able to get more information about them from www.medicare.gov or call 1-800-MEDICARE (1-800-633-4227). The Home Health Compare section there can tell you more about some of the providers in your State.
© January 2006 National Institute on Aging, U. S. Department of Health and Human Services, Public Health Service, National Institutes of Health
In addition to the emotional issues involved, caring for an aging or disabled spouse stretches your financial resources. The cost is much higher when the value of lost wages and retirement plan savings, as a result of caregiving, is included.
An important part of planning for long-term care is deciding how to pay for services. This is because long-term care is very expensive, and contrary to what many people believe, their Medicare coverage will not pay for most of the long-term care services they need. While some people may qualify for Medicaid – the major payer of long-term care services, most people won't. There are other federal public programs, such as the Older American's Act, or state funded programs, that pay some long-term care services, but like Medicaid they target those people with the most functional and financial need. Consequently, if you are one of the 60% of people over the age of 65 who will need long-term care services – there's a very good chance you will have to pay for some or all of your long-term care services out of your personal income and resources.
Paying for long-term care out of your personal income and resources can be challenging. Even if you have a modest need for assistance at home with personal care, say a visit from a home health aide three times a week, based on 2006 average costs, you would have to pay about $16,000 a year for those services.
To make the best decisions about how to pay for long-term care you need to understand what services cost, what public programs you are eligible for and what they cover, what private financing options are available, and which ones work best for you.
U.S. Department of Health and Human Services
Many Americans do not plan ahead financially for their long-term care needs. Others wrongly assume that Medicare, Medicare supplemental policies or standard health insurance policies will cover the costs of long-term care services provided in settings such as nursing facilities or assisted living residences. Consequently, many Americans are needlessly impoverished each year by the costs of long-term care.
Long-term care insurance is an excellent way to protect yourself from these expenses. Finding a good policy will take some effort, but the effort will be worthwhile.
© 2005 American Health Care Association
Is your parent or loved one doing well at home? If not, it still may not be time to move. Another option: ask a relative or friend to help with daily activities. Or hire somebody to clean house, mow the lawn, and help with personal care.
Keep in mind that your loved one has strong ties to the family home. So leaving will be difficult. But on the bright side, opening a new life chapter may result in a more satisfying social life.
As you consider this decision, be sure to address these questions:
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Is your loved one willing to let someone else help?
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Do you have the funds to bring in a caregiver?
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Can you ask for help from a friend, relative, or neighbor?
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Do you live nearby?
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Can you renovate the person’s home to help with activities of daily living?
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How easily do you think your loved one will adjust to change?
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How easily does he or she make new friends?
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How does your family feel about staying vs. moving to a facility?
If your parent or older relative is moving in you, will the person have adequate privacy? Will he or she be able to move around your home easily? If not, you might need to install assisting devices such as tub or shower grab bars and easy-to-open handles on doors.
Also consider the emotional consequences of having your parent or loved one move in. Will your loved one expect you to take him or her shopping or to be included in all family activities? Will the person feel in the way? Will you expect help with cooking, cleaning, and baby-sitting? Is this a realistic expectation? How will other members of your immediate family feel? Will they suffer a loss or privacy? Consider these issues carefully before you consider having your parent or loved one move in.
Another area to discuss: finances.
Will you expect financial help with household expenses? Is your expectation realistic?
Will your parent feel guilty if he or she doesn’t contribute money toward household expenses?
Will you feel the need to critique your loved one’s spending habits, or are you afraid that he or she will critique yours?
Can you afford to remodel your home to fit your parent’s needs?
Does your loved one have enough money to support him or herself during retirement?
How do you feel about supporting your parent financially? How will you parent feel?
Assisted-living facilities provide rental rooms or apartments, housekeeping services, meals, social activities, and transportation. Their main goal is to provide social support, not medical care. However, some facilities do provide limited medical care. Assisted-living facilities are either state-licensed or unlicensed, serving senior citizens who need more care than those who live in independent living communities.
Before selecting an assisted-living facility, read the contract and tour the facility. Some facilities are large, with over a thousand residents. Others are small, with fewer than five. Consider whether the facility meets your needs:
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Will your parent or loved one have enough privacy?
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How much personal care will they receive?
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What happens if he or she gets sick?
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Can your loved one be asked to leave if physical or mental health issues arise?
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Is the facility licensed or unlicensed?
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Who is the facility’s director of health and safety?
Reading the contract carefully will save time and money later if problems surface. If you find the contract confusing, get advice from another family member or retain an attorney. Before signing the contract, make sure the facility is financially solvent and in good standing with its licensing agency.
As for the cost, facilities come with a broad range of price tags. For example, continuing care retirement communities are much more expensive than other assisted-living arrangements, often requiring an entrance deposit of more than $50,000. Remember, Medicare probably will not pay for assisted living unless care provided relates to health care and the facility is a licensed health-care provider.
Know what services are provided and which are not. Assisted living facilities generally provide private living quarters and 24-hour staffing to help residents with basic services such as administering medications and meals. They do not provide skilled nursing services, however, as nursing homes do.
Most residents of assisted living facilities spend their own money or get financial assistance from a relative. Funds may also be available from a long-term care policy, but generally not from Medicaid.
A 2005 report from Consumer Reports found inconsistencies in the type and quality of care provided by facilities nationwide. They also found that residents have increasingly grown older and frailer since assisted living facilities were created in the 1980s, thereby creating “a troubling mismatch between the care a (facility provides and the needs of its residents).
Start searching for an assisted living facility when an aging parent begins to show evidence of declining physical health. Many facilities have waiting lists.
Consumer Reports recommends calling your state’s long-term care ombudsman to ask whether complaints have been lodged against a facility and to obtain inspection reports, if any. Other suggestions are to look for “senior friendly” furnishings (such as grab bars), observe and talk to residents and staff, and visit unannounced. Once an aging parent moves to an assisted living facility, family members need to monitor the level of care.
Explore additional care options that may be appropriate for aging parents. For example, home care provided by a licensed home health agency or a community adult day care program that provides meals and activities such as crafts and exercise.
Another option for aging parents with substantial resources is a continuing care retirement community (CCRC) that provides several levels of care ranging from independent living units to assisted living to skilled nursing. Most CCRCs charge a six-figure upfront deposit as well as ongoing monthly fees. Thus, a CCRC is an investment in both real estate and long-term care.
Lastly, consider a nursing home that provides skilled nursing care. The average cost of nursing home care in the United States exceeds $70,000 a year. Many people pay for nursing home care by spending down their assets until they qualify for Medicaid. Another payment option is to purchase a long-term care insurance policy.
© 2005 National Endowment for Financial Education
Assisted living provides relatively independent seniors with assistance and limited health care services in a home-like atmosphere. Assisted living services include 24-hour protective oversight, food, shelter, and a range of services that promote the quality of life of the individual.
The philosophy of assisted living emphasizes the right of the individual to choose the setting for care and services. Assisted living customers share the risks and responsibilities for their daily activities and well-being with a staff geared to helping them enjoy the freedom and independence of private living.
Assisted living is licensed by state governments and is known by many different names including the following: residential care, board and care, congregate care, and personal care. Assisted living care is not a substitute for, but rather a complement to, nursing facility care.
Because there is no common definition for assisted living facilities, it is difficult to pinpoint the exact number of facilities. However, it is currently estimated that there are 36,000 assisted living residences nationwide. The "typical" assisted living customer is 85 years old. Three quarters of assisted living residents are female. About 68 percent of assisted living residents need assistance with bathing and almost half need help with dressing.
NCAL