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Long Term Care -- An Impending Crisis for the Elderly

If we were to ask an older person what his or her most important concerns or wishes for the future are, we would probably get a variety of different answers. But according to surveys frequently conducted among the elderly, the most likely answers we would receive would include the following three principal concerns or wishes.

Remaining independent in the home without intervention from others.
Maintaining good health and receiving adequate health care.
Having enough money for everyday needs and not outliving assets and income

Long Term Care -- An Impending Crisis for the Elderly

If we were to ask an older person what his or her most important concerns or wishes for the future are, we would probably get a variety of different answers. But according to surveys frequently conducted among the elderly, the most likely answers we would receive would include the following three principal concerns or wishes.

Strategies to Reduce Caregiver Stress

THE EFFECTS OF CHRONIC STRESS

Caregiving Stress -- Hazardous to Your Health and Sometimes Deadly

UNDERSTANDING CAREGIVER STRESS

A 2003 study of caregivers by a research team at Ohio State University has proven the off-repeated adage "stress can kill you" is true. The focus of the investigation was the effect the stress of caregiving had on caregivers. The team, led by Dr. Janice Kiecolt-Glaser, reports on a 6-year study of elderly people caring for spouses with Alzheimer's Disease. The study not only found a significant deterioration in the health of caregivers when compared to a similar group of non-caregivers but also found the caregivers had a 63% higher death rate than the control group.

Hidden Government Program Pays the Cost of Home Care

What if 33% of all seniors in this country could receive up to $1,800 a month in additional income from the government to cover their long term care costs? They can! Under the right circumstances, a little-known federal program will pay additional income to cover long term care costs for at least 1/3 of all US senior households. But the provisions of this program are such a well-kept secret that only 4.6% of eligible seniors are actually receiving the benefit. The great news about this program is the government will pay you to hire your family, friends or just about anyone to take care of you. The program is called "VA Pension."

Only about 520,000 people are currently receiving Pension from the Veterans Benefits Administration and these are not all elderly. At the most, this number represents only about 4.6% of the eligible 11,400,000 senior households -- 33% of the US senior population. Based on the incidence of long term care in the elderly, about 22% of eligibles or about 2,500,000 people should be receiving pension. That's roughly five times more persons than are receiving it now.

Most people who have heard about Pension know that it will cover the costs of assisted living and, in some cases, cover nursing home costs as well. But the majority of those receiving long term care in this country are in their homes. Estimates are that approximately 70% to 80% of all long term care is being provided in the home. All of the information available about Pension overlooks the fact that this benefit could be used to pay for home care.

It also comes as a surprise to most people that VA will allow veterans’ households to include the annual cost of paying any person such as family members, friends or hired help for care when calculating the Pension benefit. This annual cost is deducted from household income and used to calculate a lower "countable income" which in turn enables families to receive this disability income from VA. Even though VA claims the benefit is for low income families, because of the deduction for care costs, households earning between $3,000 and $6,000 a month can still qualify for Pension.

This extra income can be a welcome benefit for families struggling to provide eldercare for loved ones at home. Under the right circumstances, this annualized medical expense for the cost of family members, friends or any other person providing care, could create an additional household income of up to $976 a month for a single surviving spouse of a veteran, up to $1,520 a month for a single veteran or up to $1,800 a month for a couple.

If the disabled care recipient has been rated "housebound" or in need of "aid and attendance" by VA, all fees paid to an in-home attendant will be allowed as long as the attendant provides some medical or nursing services for the disabled person. The attendant does not have to be a licensed health professional. There is also no need to distinguish between medical and nonmedical services -- all are deductible.

It is our understanding that a nonlicensed in-home attendant could be just about anyone receiving pay for providing services. This might be members of the family, friends, or someone hired to live in the home. Examples of medical or nursing services would be help with activities of daily living such as dressing, bathing, toileting, ambulating, feeding, diapering and so on. Other services might include medication reminders or supervision necessary to provide a protective environment for the care recipient -- in the case of dementia or Alzheimer's.

For a disabled person who has been rated, a family member will be considered an in-home attendant, but that family member has to be paid for services duly rendered. There is potential for fraud here where a family member may move into the home and ostensibly receive payment as a caregiver but not actually provide the level of care paid for. Documentation for this care must be provided to VA, and it is reasonable for VA to question whether the services being purchased from a family member living in the household are legitimate. Such arrangements should be extensively documented and completely arm's-length.

The care arrangements and payment for home care must be made prior to application and there must be evidence that this care is needed on an ongoing and regular basis. We recommend a formal care contract and weekly invoice billing for services. Money must exchange hands and there must be evidence of this. All of this documentation must be provided as proof to VA when making application for the pension benefit. Costs for these services must be unreimbursed; meaning these costs are not paid by insurance, by contributions from the family or from other sources.

Information for this article came from the website -- www.veteransaidbenefit.org. This website is not sponsored by the government but the site is currently the only complete source for information on the Pension benefit other than VA.

Medical Care at the End-of-Life

Medical Care Immediately Prior to Death
In the first half of the 20th century, most people who died had an accident or contracted a disease or they had a physical disorder that inevitably lead to death. Life-saving medical interventions such as sophisticated resuscitation, complicated surgeries, life-saving treatments, ventilators, feeding tubes and other life-support were rarely used or even available. Nowadays there is great emphasis on curing medical problems sometimes to the exclusion of recognizing that death might be a more welcome outcome.

Surveys indicate that older people are often more afraid of death than younger people. But for all Americans -- young and old -- there is a great fear of death and oftentimes the families of those loved ones, who are near the end-of-life, will go to great lengths to try interventions that may be ineffective in prolonging life. We need only look to the Terri Schiavo case as a reflection of the attitude of many Americans who are unwilling to let loved ones pass on. Estimates are that about 30% of Medicare reimbursements are spent on people in the last year of their life. It is a fact that much of this medical care did little to prevent death and prolong life.

According to the Dartmouth Atlas study on death:

"The quality of medical intervention is often more a matter of the quality of caring than the quality of curing, and never more so than when life nears its end. Yet medicine's focus is disproportionately on curing, or at least on the ability to keep patients alive with life-support systems and other medical interventions. This ability to intervene at the end of life has raised a host of medical and ethical issues for patients, physicians, and policy makers.

The Dartmouth Atlas project uncovered some startling differences in what happens to Americans during their last six months of life. In some parts of the country, nearly 50% of people are in the hospital at the time of death, rather than at home or in a nursing home or other non-hospital setting. In these areas, the likelihood of being admitted to an intensive care unit during the last six months of life is also higher than average - as is the likelihood of being admitted to an intensive care unit during the hospitalization at the time of death. In other parts of the country, the likelihood of a hospitalized death is far smaller, and people who are dying are much less likely to spend time in hospitals during their last six months of life.

The Atlas asked why this was so - why someone living in Miami was so much more likely to receive a great deal of high-tech, expensive medical services, while someone with the same condition who lived in Minneapolis received so much less. The answer appears to be that the capacity of the local health care system - the per-capita supply of hospital beds, doctors, and other forms of medical resources - has a dominating influence on what happens to people who are near death. Those who live in areas like Miami , where there are very high per capita supplies of hospital beds, specialists, and other resources, have one kind of end of life experience. Those who live in areas like Minneapolis or San Francisco , where acute care hospital resources are much more scarce, have very different kinds of deaths.

The question, then, is which is better? From the dying person's perspective, more is not necessarily a good thing - more visits to doctors for someone who is very sick can be stressful and exhausting. For many people a hospitalized death is something to be avoided if at all possible. From the perspective of the health care system, much of the care being given is futile, and accomplishes little. People who live in areas with very high utilization of hospital resources do not live longer than people who die in areas where utilization is lower - and if extension of life is not the goal of intervention, what is? From society's perspective, the cost of this kind of intervention is high, futile, and takes resources away from places where the money might be spent far more productively."

Deciding How and When to Stop Curing and Start Caring
Some people are content to leave decisions regarding their death in the hands of others. By doing so, they may expose themselves to unnecessary and futile treatments as outlined above. They may experience numerous visits to the emergency room in the last stages of their life. And their dependency on others often results in great stress to family members when loved ones at the end-of-life lose their capacity and didn't make their last wishes known. Families are often forced to make decisions about life-support and treatment without knowing whether their loved one would have wanted these interventions.

Medical providers have come up against this situation many times and as a result there are written guidelines for doctors dealing with end-of-life issues. Here is a listing of the titles of official positions taken by the American Medical Association on a number of end-of-life actions. The actual content can be found online on the AMA website.

Do-Not-Resuscitate Orders
Futile Care
Medical Futility in End-of-Life Care
Quality of Life
Withholding or Withdrawing Life-Sustaining Medical Treatment
Optimal Use of Orders - Not-To-Intervene and Advance Directives
Surrogate Decision Making

Advance Directives
One of the most important ways for a person to express his or her intent for the end-of-life is through an advance directive. Advance directives for medical treatment ordinarily involve the four following written documents.

• Living will
• Health care treatment plan
• Health care power of attorney
• Do not resuscitate at-home (for states that allow a legal procedure for this action)

We will go into greater detail on these forms in a future article but will mention here some important points to consider with these documents.

• Many if not all healthcare organizations have standard forms for living wills. Some providers may also allow for signing a do-not-resuscitate order. Some of these documents may not be what they claim to be. Read them carefully.
• A health care treatment plan is usually created between a patient's physician, the patient and an attorney. This is a detailed agreement on how to handle certain medical interventions.
• A health care power of attorney is a legal document that would not usually be available as a standard form from a health care provider. This document should supersede any other guidelines that physicians use for making medical treatment decisions.
• The do-not-resuscitate-at-home arrangement is a very complicated procedure where a person needing emergency medical treatment in the home and not desiring resuscitation makes that wish known to emergency medical personnel. This involves an identification bracelet, a complicated verification procedure and an OK from a central clearinghouse not to perform any life-saving actions.

A patient or his or her spouse or a family member will typically call 911 in the event of a life-threatening emergency. Very seldom will the living will, the health care treatment plan or the health care power of attorney end up with anyone in the emergency room. Medical decisions for someone who cannot make those intentions known, generally devolve to family members who show up at the hospital. The actual health treatment wishes of the patient may be at home in the desk drawer. It is therefore extremely important to remember to take these documents to the emergency room whenever a crisis arises.

Without the advance directives in hand for an emergency room or for a hospital admission, many patients or family will be given the opportunity to sign a standard form from the health care provider. Many hospitals, nursing homes and home health agencies provide forms that allow or disallow a number of treatments. It is extremely important for the patient or the family to read these institutional advance directives thoroughly before signing. Some of these documents, claiming to be a living will, are in fact not, but are other types of advance directives that may not fit the needs of the family.

We will discuss in more detail, specific issues dealing with end-of-life, in future articles.

Using a Professional Care Manager

Services from care managers should be something that every family takes advantage of, but in reality very few families use them. Care managers could go a long ways towards helping the family find better and more efficient ways of providing care for a loved one.

The concept is simple. The family hires a professional adviser to act as a guide through the maze of long term care services and providers. The care manager has been there many times. The family is experiencing it usually for the first time.

Hiring a care manager should be no different than hiring an attorney to help with legal problems or a CPA to help with tax problems. Most people don't attempt to solve legal problems on their own. And the use of professional tax advice can be an invaluable investment. The same is true of using a care manager.

Unfortunately there are too few care managers and the public is so poorly informed about the services of a care manager, that valuable resources that could be provided go lacking.

The irony of not using a care manager is that most families -- when given the opportunity to use the care manager -- think they can do it themselves and will not pay the money. Yet the services of a care manager most likely will save them considerably more money then do-it-yourself. The cost of the care manager might be only a fraction of the savings the care manager could produce. Care manager services can also greatly reduce family and caregiver stress and help eliminate family disputes and disagreements.

Even the Yellow Pages do not cooperate in helping the public find care managers. To find a care manager one must look in the Yellow Pages under "Senior Services". Who is going to know to look under that subject?

Below is a partial list of what a care manager might do:

1. Assess the level and type of care needed and develop a care plan
2. Take steps to start the care plan and keep it functioning
3. Make sure care is received in a safe and disability friendly environment
4. Resolve family conflicts and other family issues relating to long term care
5. Become an advocate for the care recipient and the family caregiver
6. Manage care for a loved one for out-of-town families
7. Conduct ongoing assessments to monitor and implement changes in care
8. Oversee and direct care provided at home
9. Coordinate the efforts of key support systems
10. Provide personal counseling
11. Help with Medicaid qualification and application
12. Arrange for services of legal and financial advisors
13. Manage a conservatorship for a care recipient
14. Provide assistance with placement in assisted living facilities or nursing homes
15. Monitor the care of a family member in a nursing home or in assisted living
16. Assist with the monitoring of medications
17. Find appropriate solutions to avoid a crisis
18. Coordinate medical appointments and medical information
19. Provide transportation to medical appointments
20. Assist families in positive decision making
21. Develop long range plans for older loved ones not now needing care

Let's look at two hypothetical examples to see how a care manager could be used.

Here is the first example:

Mary is taking care of her aging husband at home. He has diabetes and is overweight. Because of the diabetes her husband has severe neuropathy in his legs and feet and it is difficult for him to walk. He also has diabetic retinopathy and cannot see very well. She has to be careful that he does not injure his feet since the last time that happened he was in the hospital for four weeks with a severe infection. She is having difficulty helping him out of bed and with dressing and using the bathroom. She relies heavily on her son who lives nearby to help her manage her husband's care.

On the advice of a friend Mary is told about a care manager, Susan Brown, who helped the friend's family cope with the care of a loved one. The cost of an initial assessment and care plan from the care manager is $300.00. Mary thinks she has the situation under control and $300.00 for someone from the outside to come in and tell her how to deal with her situation seems ridiculous.

One day Mary is trying to lift her husband and injures her back severely. She is bedridden and cannot care for her husband. Her son, who works fulltime, now has two parents to care for. On the advice of the same friend he decides to bring in Susan Brown and pay her fee himself.

Susan does a thorough assessment of the family's needs. She arranges for Mary's doctor to order Medicare home care during Mary's recovery. Therapists come in and help Mary with exercises and advice on lifting. Susan advertises for and finds a private individual who is willing to live in the home for a period of time to help Mary with her recovery and watch over her husband. Susan makes sure the new caregiver is reliable and honest and that taxes are paid for the employment. Susan enlists the support of the local area agency on aging and makes sure all services available are provided for the family. Susan also calls a meeting with Mary's family and explains to them the care needs and how they need to commit to help with those needs. Susan makes arrangements to purchase medical equipment for lifting, moving and easier use of the bathroom facilities. Medicare will pay much of this cost.

Susan suggests using a geriatric care Physician she works closely with to help Mary in the care of her husband. The geriatrician meets with Mary and her husband and spends a great deal of time explaining the proper treatment and care of elderly with diabetes. He rearranges medications and puts Mary's husband on a new insulin regimen to better control his blood sugar. He starts a strict diet and insists on weight loss and exercise. The previous doctor seemed more interested in treating symptoms than in changing lifestyles. In contrast to this attitude, the geriatric Physician feels that Mary's husband has a chance of improving his health with proper treatment.

Susan also works closely with an elder law attorney and a financial planner who specializes in the elderly. The attorney prepares documents for the family including powers of attorney, a living will and advice on preserving Mary's remaining assets. The financial planner recommends a reverse mortgage specialist to help Mary and her husband tap unused assets in their home's equity. In addition, an income vehicle is put into place to convert assets into income in order to provide for Mary for her life when her husband is gone. And finally, with the help of the financial planner, an application for veterans benefits is made for Mary's husband who is a veteran. Depending on the monthly cost of care this additional income could provide up to $1,800 more a month in household income.

With the help of the care manager, Mary's life and future have been significantly improved. Her husband as well, if he adheres to the care plan, may end up having a better quality of life for his remaining years.

Here is another example of the value of the care manager.

Michelle is a single divorced mother with two teenage children. Her mother, Martha, has a stroke which apparently causes some memory loss as well as some disability in being able to fend for herself. Michelle decides to move in with her mother and take care of her. In return, Michelle who is temporarily out of work, has a place to live and share her mother's retirement income.

Martha is anything but easy to take care of. She has mood swings and often forgets what she is doing. She seems to display a lot of anger and takes it out on Michelle, calling her all kinds of horrible names. She is never happy and is constantly calling for attention. In trying to take care of her own children as well as her mother, Michelle is quickly being drained of her physical and emotional strength. In addition Michelle's brother and two sisters are happy she is taking care of her mother since they are now absolved of the responsibility, but they treat Michelle terribly. They also call her awful names and accuse her of being a "leech". On the other hand they have plenty of advice on how to deal with their mother but never offer any of their own time to help. After all, they reason, Michelle is receiving benefits from caring for her mother and logically she should be responsible for all the care.

On the advice of a friend, Michelle hires a care manager, Brent Smith, who comes highly recommended in solving family disputes. Brent is a certificated mediator. Brent first does a care assessment of Martha and comes away suspecting there is more to her personality disorder than a stroke. He makes arrangements to take Martha to a geriatric Physician who does a complete physical assessment and recognizes that Martha's mental state is due more to improper medications and severe depression. Martha's medications are reduced and changed and she is put on antidepressants. In addition her diet is upgraded, she is to receive more fluids, more healthy foods and especially receive vitamin supplements. Particularly important is a prescription for vitamin B12 shots.

The doctor insists on as much exercise as Martha can handle. Brent, the care manager, helps convince Martha of the need for her new care program and helps oversee her following through on the exercise program. Over the ensuing months Martha's lack of memory and abusive behavior become less severe. She is also better able to care for herself without Michelle's assistance.

In addition to the assessment, one of the first things Brent does is to contact Michelle's older brother who is the family leader. He has a long talk with her brother and gives the brother a different perspective on the issues. With a better understanding of the situation, the brother calls a family meeting and Brent mediates a successful resolution of the family mistreatment of Michelle and the ensuing bad feelings. Everyone including Michelle is called upon to do their part in managing the care of her mother and to work on better family relations. The issue of Michelle "sponging" off of her mother is addressed and an adequate solution is agreed to by all. Brent will follow up in a month to make sure everyone is following through on his or her commitment.

These two examples concentrate on care in the home but care managers are also actively involved in helping families with the selection of facilities and any appropriate care services. Finally, care managers are indispensable in helping coordinate and arrange for care for a loved one living far away from family members.

To view more articles like this go to: http://www.planforcare.net

CAHSAH Fact Sheet—AB 853 (Jones)

The California Association for Health Services at Home (CAHSAH) seeks to create minimum standards for the home care industry when providing private sector home care service in California. These minimum standards seek to protect the consumer, home care aide and home care organization. In 2006, the CAHSAH formed a Minimum Standards Task force to identify key consumer protections. The result is AB 853, the Home Care Services Act of 2007.The California Association for Health Services at Home (CAHSAH) seeks to create minimum standards for the home care industry when providing private sector home care services in California When family members and seniors and disabled persons begin to research choosing a caregiver to provide non-medical home care services to themselves or a loved one, they often fail to ask critical questions of their home care providers. They mistakenly believe that there are current licensure requirements. The only license for home care services required in California is a business license. The failure to ask critical questions of the home care provider has resulted in confusion by the caregivers or the caregiver not receiving a service that they believed they were going to receive from the caregiver. It has also resulted in elder abuse.

The minimum standards seek to answer key questions to protect persons seeking services:

• What home care services are provided and what can not be provided? What kind of training
does my home care aide receive? Are references verified and background checks performed?

• Who coordinates services and resolves problems, including replacements when home care aides
are sick and cannot work?

• Who is responsible for withholding and paying taxes, workers’ compensation and other insurance?; How is the payment made for services?

The Home Care Services Act of 2007 would do the following:

• Creates a licensure system for providers of home care services to register and pay an annual fee.

• Creates definitions to build a common naming system by defining home care services and allowed duties, home care aides, clients, and organizations.

• Requires that home care aides are covered with workers’ compensation insurance, a dishonesty
bond, background checks, verified references, worker photo badges, access to a home care consultant when care is delivered, Tuberculosis tests, emergency and back up staffing procedures,
professional liability insurance, and policies and procedures in key areas, such as money and
property, to reduce the likelihood of any financial abuse of the client.

• Provides consumers will be noticed of their rights and given information in advance of care.

• Requires the provider to ensure basic competency of the employee within the first 30 days of
employment and to provide a minimum of two hours of training on job-related topics each year
by the anniversary date of hire. Requires an annual in-home visit assessment of performance.

• Creates a formal list of home care service providers that discharge planners, families and persons seeking services can access to determine if their care provider has met the requirements.

Contact Barbara Biglieri, at ext. 123 or bbiglieri@cahsah.org for more information.

California

Association for Health Services at Home .

3780 Rosin Court, Suite 190 , Sacramento, CA 95834. Phone:916-641-5975