HEALTH INSURANCE From Your Employer May Not Be the Best Bet
If your insurance is based on your personal employment, then the onset of a disability that prevents you from working may become the very event that causes you to lose your insurance. Employer-based group health insurance is usually available in two cases. Either the insurance covers a class of eligible people that includes you as employee, employee's spouse, or employee's dependent--or you qualify for 'COBRA' benefits as defined by federal law.
Most primary participants in employer-based plans must be current, full-time, active employees. Some, but only a few, employers include retired employees as an eligible class. If your employer's plan does not include disability-retired employees, then you may be required to forfeit your normal group health benefits if illness forces you to leave work. At that point you would be entitled to what federal law mandates through COBRA. COBRA benefits extend anywhere from 18 to 36 months. At the end of this period, it may be difficult or impossible to purchase any adequate form of group or individual major medical coverage from the private marketplace. This may include health insurance coverage at a future employer as well.
Remember too, if your employer currently includes disability-retired employees as an eligible class, your employer may eliminate that class at some future date to cut costs. If you leave work due to disability and apply for Social Security, and are accepted, you will receive Medicare coverage 29 months after you become eligible.
As long as your health insurance is based on somebody's employment, your coverage is not as bullet-proof as it might be. There is yet another risk. This system of employer-based private insurance has enabled the private marketplace to keep costs down, at least in part by shifting many higher-cost users out of commercially available insurance risk pools. Another way to keep costs down is for an insurance company to refuse to pay legitimate claims. The legal structure of employer-based policies may actually encourage more claim refusals in employer-based groups than in other forms of health insurance. Here's how:
An insurance policy is actually a contract, and is usually governed by your state's law. This includes your state's legal remedies for breach of contract. In many states, when an insurance company acts in bad faith, by not paying legitimate claims, for example, the legal damages owed to the insured person can be a much larger sum than what was originally owed for the claim. This possibility can be enough to encourage the insurance company to pay what is legally owed.
But most employer-based group health insurance plans are governed by a federal law called the Employee Retirement Income Security Act (ERISA). Because of provisions in ERISA, the remedies for breach of contract against most employer-based health insurance plans are limited by federal common law, which does not include any form of penalty for bad-faith misbehavior. Even if taken to court, all the insurer would ever have to pay would be the amount due under the policy--and then only when ordered by a court. In other words, there is no penalty to provide an incentive against misbehavior.
Bottom line: Explore any options you may have for major medical or hospital insurance through a professional, trade, alumni, or other association or group to which you belong, or which you could join. If you are lucky enough to have an option, consider it carefully even though it may cost more than employer-based insurance. In my opinion, coverage that depends upon membership instead of employment is better should you ultimately need your insurance protection to perform.
'PSYCHOLOGICAL ISSUES AMONG ADOLESCENTS IN FAMILIES IN WHICH A PARENT
HAS MULTIPLE SCLEROSIS;' HEALTH CARE DELIVERY & POLICY RESEARCH (HCDPR) RESULTS
A common concern among parents in MS families is the psychological impact the disease may have on their children. In response, the Society has funded research to determine whether, how, and to what extent parental MS results in problems for children, as a basis for developing and targeting new counseling, education, and other assistance efforts.
Dr. David White and colleagues at the University of Washington (Seattle) administered standard psychological adjustment inventories to 25 adolescents in MS families, 55 adolescents in non-MS families, and case and control group parents, to obtain answers to these questions.
The investigators found that most adolescents in MS families appear to be psychologically healthy overall, and do not differ from control group adolescents in mood, body image, social or academic functioning, or relationship satisfaction with their parents. However, these adolescents worry significantly more than their peers about their parents' health; and they feel uneducated about MS (which may worsen their worries); but few speak with professionals to express their concerns and to get help when needed. Dr. White's findings on adolescents complement and support other studies of young children, and adult children, whose parents have MS.
Based on their findings, Dr. White and his colleagues recommend:
(1) Parents need to be reassured that the effects of their MS will not necessarily cause psychological problems for their teenagers: most adolescents are proud of their parents with MS, and often grow up to be more sensitive than their peers to the needs of others and to be more self-reliant.
(2) Adolescents often don't express their MS-related worries/fears. Therefore, when individuals with MS are initially assessed by care teams, there is a need to evaluate the impact of MS on adolescents (as well as on all other family members), to identify those cases in which there may be a problem requiring professional assistance.
(3) Moreover, adolescents need to be able to explain their parents' MS to peers, to avoid feelings of embarrassment or isolation. Thus, family discussion about MS should be promoted, and educating adolescents about MS should be an ongoing process.
(4) Sometimes, family therapy is more useful than individual therapy offered solely to the parent with MS.
Individuals concerned about MS, including caregivers, should consider these findings when they assess the range of current services or plan new ones.
CHILDREN AND MS
Even very young children notice slight physical changes in a parent. They readily pick up on their parents' emotional distress. If parents avoid talking about MS, a child may think it is too terrible to talk about. Children may not express their worries openly, so they should be encouraged to share what they are thinking. This gives parents an opportunity to clear up their misconceptions and offer reassurance.
It is not harmful for a child to see a parent's genuine feelings. While it is inappropriate to burden children with adult problems, honest expression of sadness, frustration or anger makes it clear that such emotions are normal and acceptable. This may also help a child be more willing to talk about his or her own feelings.
Children's fears often appear as changes in behavior, withdrawal from family and friends, poor schoolwork, and aggression. If the home atmosphere is one in which thoughts and feelings are shared and questions are answered honestly, children are more likely to turn to their parents with their worries. This is an ongoing process: children's concerns will change as they grow and the MS itself changes.
Many older children and teenagers seem embarrassed by their parents whether they have MS or not. Children may worry that their friends think less of them because of their parent's disability. Embarrassment may also be an indirect way of expressing fear, sadness and anger. Parents can help by encouraging their children to express their underlying feelings. Eventually most children will see qualities in their parents that make them proud.
Children in MS families grow up with firsthand knowledge of illness and disability. Many become unusually aware of the feelings and needs of others. But, paradoxically, this valuable quality makes some children feel selfish if they seek their own goals. They may need to be encouraged to balance their desire to be helpful with their equally important need to have lives of their own.
Some children who try too hard to help or are too 'good' may harbor the fear that they did something to cause the MS or that they could do something to stop it. They may need help to overcome this.
TEENAGERS AND MS
Teenagers who have parents with MS have offered several suggestions for dealing with everyday and long-range situations:
Everyone says, 'Talk about it; don't hold it inside.' But sometimes it's hard to get started, or to find the right person who will listen. Lots of people have trouble talking to their parents, whether or not they have MS.
Talking with friends gets things off your chest, but friends may not have the same experiences that you have at home. They may know very little about MS. Friends care about you, but they may be at a loss about how to help with a particular situation.
Speaking with a friend's parent, youth group leader, family doctor, school counselor, favorite teacher, clergyperson, grandparent, aunt, uncle, or older cousin may be easier if talking to a parent is hard for you.
Some brothers and sisters feel disloyal or guilty for talking about MS behind their parents' back. Still, it can be very helpful to talk about the experiences you share. Even if you don't have heart-to-heart chats, brothers and sisters at least can talk about practical things, like how to divide up household chores fairly.
Parent with MS
Communicating with the parent who has MS may be the heaviest door to push open. It's easiest to start a conversation at a time when your parent is comfortable and not too tired and when you aren't too stressed yourself. A calm time is much better than in the middle of an argument. Choose a time and then plunge in. Tell your parent how you feel and what you think. Ask for understanding.
One person who's often left out of the communication loop is the healthy parent. Whether your parents live together or apart, you'll find times when you want to talk with the one who doesn't have MS. Whatever your parent's style, your best bet is to be honest about how you feel. If you're upset at the moment, it's okay to say, 'I need to cool off. I'll talk to you in an hour.'
Even in families that communicate openly and honestly, counseling by a therapist can be helpful from time to time. Tell your family doctor or school guidance counselor that you'd like to talk with a professional counselor.
Peer support groups
Many teenagers say that the best help they ever found was through support groups with other teens whose parents have MS. If you haven't connected with a chapter near you, call 1-800-FIGHT-MS and push the button that forwards your call to your local chapter.
Get a life
You probably have more home responsibilities, more anxieties, and more emotional demands than many of your friends. Your parent's MS has a big influence on your life, but the disease cannot dominate it. Your life can be happier if you live it as fully as possible. That means having fun, working hard and enjoying school, taking part in whatever your interests are. Your parent may depend on you, but you cannot become a martyr to MS. If you feel this is happening, talk honestly to your parent about it. As senior year of high school approaches, some teenagers believe that they have to shelve plans for college. They assume it will cost too much on top of medical and other family expenses. Talk with your parents and a school counselor. If college would have been in your plans without MS, you owe it to yourself to find out about college scholarships, loans, and other alternatives. MS shouldn't hold you back.