Total costs of MS varied widely across countries for which studies have been conducted but are substantial in all countries. The total (prevalence weighted) average annual cost per person with MS in 2007 (based on existing studies from 15 countries) was $41,334. Over a lifetime it is estimated that the average financial cost of MS in high income countries is more than $US 1.2 million per person. Loss of employment, or early retirement, is considered the single largest cost factor contributing to this financial cost.
Costs of MS
Types of costs were divided into three broad categories: direct, indirect and intangible costs, with the view to understand more fully the kinds of costs that MS demands of the individual and society.

Direct costs
Direct costs are those incurred by the individual or society as a direct result of the disease. In the report these costs were divided into medical and non-medical subcategories and cover everything from visits to neurologists to the costs of installing wheelchair ramps at home, and the value of care-giving provided by family, friends or professional carers. The responsibility of caring for the person with MS often falls on those closest to him/her and this can affect the carers’ ability to work. Often carers are forced to work shorter hours in order to care for their loved one, or increase working hours to compensate for their loss of income. For carers it is essential that employers are understanding, supportive, and flexible where possible to enable carers to continue working in order to support those who cannot work themselves. Direct costs accounted for 26% to 87% of the total costs of MS

Indirect costs
Indirect costs, which accounted for 13% to 74% of total MS costs, are those costs which are related to MS but cannot be attributed directly to the disease itself. Loss of work is often the most costly contributor to the overall cost of MS since the average age of onset of MS is 29.2 and can dramatically affect or curtail the working life of the individual. The symptoms of MS, which can include physical disability, fatigue, cognitive impairments, transportation difficulties and speech impairments, can make finding and retaining employment difficult especially where employers do not support the changing needs of the employee.

The costs incurred can include short-term and long-term absence from work during periods of relapse, reduced working hours, changing the type of work to a less physically challenging and stressful nature (often at a lower pay), and early retirement.

Intangible costs
Intangible costs are those costs that are often most difficult to measure and can include changes to the quality of life of both the individual and his/her friends and family. In the 13 studies that were analysed with relation to quality of life, several patterns emerged. Firstly, the impacts on physical functioning are larger than those on social functioning or mental functioning, and secondly that physical quality of life deteriorates as the disease progresses over time. Significant impacts on social and mental functional were also found over time. These studies show that a diagnosis of MS does not necessarily affect the ability of the individual to engage socially or mentally, but that physical engagement may be the biggest barrier to activity that the individual faces – especially in the early stages of the disease. With this in mind, it is important that employers offer a variety of solutions to make work more accessible to those with physical disabilities.

You can read the full article here

Related posts

• The Challenge of Working with MS (5)
• Protecting Your Job While Coping With a Chronic Illness (3)
• Promising psychosocial treatments for pain in MS (4)
• Pet Therapy and Assistance (0)
• Pain in Multiple Sclerosis part 3 – Secondary pain (8)
• Pain in multiple sclerosis part 2 – Neurogenic pain (4)
• Living with MS (0)

It’s not so long ago that a diagnosis of MS led your doctor to tell you to quit work and go home and rest. Many people did this, but they got bored.

MS affects people in different ways. Some have a relatively mild form of MS and may never experience any symptoms which prevent them from working. Others may have to cope with varying degrees of disability from time to time, whilst some people may become severely disabled quickly. It is only a small proportion of people with MS who are so severely affected.

However, there are many reasons why people leave the workforce ranging from problems with fatigue and cognitive dysfunction to embarrassing problems such as bowel and bladder difficulties. But many people are not aware of the treatments available and the accommodations that can be made to allow them to stay “on the job”.

While well meaning friends, family and healthcare workers could be encouraging you to reduce stress and give up work, there is only a tentative link between MS and stress and the stresses of unemployment with its financial burdens are not a good solution.

So let’s start with working outside the home.

There are many benefits for an employer who supports the employee with any kind of disability

• Maximising on their investments in an employee with MS, for example by not losing prematurely the skills and experience of a well trained member of the workforce
• Avoiding potential difficulties by adopting a proactive approach to intermittent medical condition policy issues now, instead of waiting for a situation to arise
• Confirming that existing/new policies and procedures comply with current or upcoming legislation
• Capitalising on the expertise and support provided by the MS Societies
• Promoting a positive perception/image of the organisation to both employees and external audiences.

For the employee there are reasons to keep going.

• Financial security: The longer you remain in the workforce the higher you benefits are likely be if you need to leave and the longer you can pay into savings.
• Fringe benefits such as health insurance may be one of  your most valuable assets.
• Your identity is often defined , at least in part, by the kind of work you do.
• A sense of self worth comes from  feeling productive and contributing to your family, your community and even society as a whole. Thus voluntary work can have just the same benefit.
• Being a role model for others feels good. A model for your kids, others with disabilities and even anyone else who’s paying attention.

If you want to stay in the home there are options you can look into.

There may be many reasons why people struggle to secure employment outside of the home, and disability and ongoing illness may be one cause. Problems overcoming physical limitations, in the workplace, or employer reluctance to hire you and give you the chance to try may arise despite laws that forbid discriminating against disabled applicants. Ongoing or frequent illness may mean that you miss a lot of work, or are unable to keep up with the required working pace. Working in the comfort of your own home ensures that all areas are accessible and safe, and any specialist devices that you may need such as computer screen readers for the blind are available to you.

Some home working may involve being employed as an at home agent of a larger company, whilst others may involve you being self employed; your own boss, answerable to no one but yourself. You may have to try several different things before you find something that is suitably flexible to work for you, or that meets your other needs and your likes.

The internet is a great, big equalizer and it can work to your advantage. The internet does not care if you are disabled – it only requires that you can deliver the work you promise.

Self employment can start very easily and if you are using social networks like Twitter and Facebook you will have a readymade audience to work with. Be careful not to sign up with some of the called “gurus” who claim you can make huge amounts of money in very little time. There is no such thing as a free lunch but by working consistently you can achieve your goals.

Look into things like MY AUTO CASH GENERATOR by Joey Smith and Devon Brown or investigate scriptlance.com or elance.com article writers, web designers, software programmers, audio transcriptionist, proofreaders, video creators, et cetera are all used by these companies. Or check out a directory site like wahcheck.com . Start advertising yourself with a free advertiusing service. There is no end of wasy to keep the costs down.

There is no requirement to stick to only one option you can do as many as you like but don’t dilute your focus by trying to do too many.

Related posts

• Sexuality and intimacy in MS – part 4 Secondary (0)
• Disability 101: Changed and on my way to D.C. by Rosalind Joffe (0)
• Sexuality and intimacy in MS – part 5 Tertiary (0)
• Protecting Your Job While Coping With a Chronic Illness (3)
• Promising psychosocial treatments for pain in MS (4)
• Pain in multiple sclerosis part 2 – Neurogenic pain (4)
• Living with MS (0)

Related posts

• The Challenge of Working with MS (5)
• Protecting Your Job While Coping With a Chronic Illness (3)
• Global Economic Impact of MS (0)

here http://www.nytimes.com/2009/06/20/health/20patient.html?_r=1&ref=health

It is reporduced here for your convenience.

———————————————————————-

IT started with an odd sensation in her right hand and a feeling of exhaustion so profound she could hardly get through an hour of work, let alone a full day.

After numerous tests and countless doctors’ visits, Natasha Frechette, then 27, learned she had multiple sclerosis, a disease that attacks the central nervous system and can cause numbness, blindness and eventual paralysis.

In addition to grappling with the diagnosis, Ms. Frechette was concerned about keeping her job as a data manager for a small research organization in Brooklyn Park, Minn. “I didn’t want to have to depend on someone to take care of me,” she said. “But I know that I could wake up tomorrow and not be able to walk.”

Workers with chronic illnesses face chronic uncertainty, forced to worry not only about their health but about their jobs as well. The protections afforded chronically ill workers in the United States are thin and somewhat vague. To protect their health and their jobs, workers must navigate employers’ policies, which may include short- and long-term disability plans, as well as a patchwork of federal laws and regulations.

A recent study by the Center for Economics and Policy Research, a Washington research organization, found that among 22 rich nations, the United States was the only one that did not guarantee workers paid time off for illness.

Most other countries provide their workers not only with paid sick days, but also time off for cancer treatments, the study found. German citizens, for example, are allowed five sick days and 44 days for cancer treatment, if needed, in addition to vacation days.

Most employers in the United States allow employees to take days off for minor ailments, like the flu or outpatient operations, without docking their pay. And 41 percent offer employees days off — nine, on average — for illness or other reasons, in addition to vacation days, according to a 2007 survey by Mercer, a benefits consulting business based in New York.

But when an employee has a serious or chronic illness, like diabetes, major depression or lupus, the rules about time off become murky.

Two laws offer workers some relief. The Family and Medical Leave Act allows employees to take up to 12 weeks off each year for medical or family emergencies — but without pay. And the Americans With Disabilities Act requires employers to make reasonable adjustments for disabled workers, often in the form of additional time off.

Ms. Frechette explained her condition to her supervisor and said she would need time off for physical and occupational therapy. Her boss readily agreed, and Ms. Frechette, who plans to marry this fall, continues to work full time.

“I’m careful,” she said. “I don’t want my disease to be seen as a cop-out.”

If you are dealing with an chronic illness, here are some strategies to help you maintain your job.

INFORM YOUR EMPLOYER If you have a condition that could interfere with your performance, tell your boss. “People are often afraid of being discriminated against,” said Rosalind Joffe, a career coach who counsels people with chronic illnesses. “I had one client who didn’t disclose his illness to anyone. His odd behavior led his boss to conclude he was a drug abuser.”

Be honest. Explain what your condition is and how it might affect your work. “Don’t be ashamed,” Ms. Frechette said.

A supervisor who understands what is wrong is less likely to make false assumptions about what you can and cannot do. “Be clear about your value and what you can deliver,” Ms. Joffe said. “If you’re a valued employee, your boss will work with you.”

If you feel you are being unfairly treated, speak with your supervisor. If that doesn’t work, go to the human resources department.

ASK FOR ADJUSTMENTS If your illness meets the definition of a disability, your employer is required to make reasonable accommodations to your job or work environment, according to the Americans With Disabilities Act.

What is a disability? “It’s a physical or mental impairment that substantially limits one or more major life activities,” said Chris Kuczynski, director of the division that deals with the disability act at the federal Equal Employment Opportunity Commission.

Although your illness may be episodic or controlled by medications, it is still a disability, according to a recent amendment to the law.

Your employer does not have to provide an accommodation if it would impose significant difficulty or expense. Asking for a car and driver to take you to and from work would probably not be reasonable, Mr. Kuczynski said. But taking time off for chemotherapy treatments certainly would.

According to the Society for Human Resource Managers, the top five accommodations for the disability act provided by employers in 2005 (the last year for which data are available) were parking or transportation modifications, making existing facilities accessible, offering new equipment to workers, restructuring jobs and modifying the work environment.

If you are not sure what type of accommodations you are entitled to or how to ask for them, contact the Job Accommodation Network (800-526-7234), a service provided by the federal Department of Labor. In general, the network recommends that you put your request to your employer in writing. If you work in a small, informal setting, that may not be necessary.

KNOW THE TIME-OFF POLICIES You can learn about the on-the-books rules by going to your company’s intranet or speaking with its human resources department.

If you need to take a few weeks or months off for an operation, for example, or chemotherapy, research your company’s short- and long-term disability plans. Disability policies typically allow you to take a specific time off at reduced pay. According to Mercer, the consulting firm, 78 percent of employers offer short-term plans and 80 percent offer long-term disability plans.

You can also tap into your 12 weeks of family and medical leave at any time. You may take the time intermittently or all at once. You will not be paid, but your job will be secure.

EXPLORE ALTERNATIVES If the hours are too long or the work is too taxing to handle while you are ill, find out whether you could work part time or could even take a different job in your company.

If neither is feasible, explore new career possibilities. One of Ms. Joffe’s clients was a high-powered lawyer who had a serious heart condition. To reduce stress, he decided to give up litigation and become a teacher.

If you are worried about your finances or health insurance, be sure to check with the advocacy organization focused on your disease. The American Cancer Society, for instance, has a call center (800-227-2345) that helps people who don’t have health insurance or are on the verge of losing it.

If your illness finally prohibits you from working altogether, you may apply for Social Security disability insurance. The process is lengthy, and you must be able to prove that you cannot work at any job. The amount you are paid is based on your lifetime earnings — you can find the number on the annual statement you receive from the Social Security Administration.

Generally, payments are modest: the average in 2008 was $1,063 a month. But once you have received disability payments for two years, you automatically qualify for Medicare coverage.

Related posts

• The Challenge of Working with MS (5)
• Global Economic Impact of MS (0)
• Why Do I Feel So tired? (0)
• Sexuality and intimacy in MS – part 5 Tertiary (0)
• Sexuality and intimacy in MS – part 4 Secondary (0)
• Sexuality and intimacy in MS – part 3 Male sexual dysfunction (0)
• Sexuality and Intimacy in MS – part 2 Female sexual dysfunction (0)