Planning for life as an adult CFer

[letefk]

This may seem like a strange question, but my husband and I have started conversations about what we can do now to prepare for our children's adult life with CF. Obviously, we know that we can manage their treatments and nutrition and encourage healthy attitudes. But we are also wondering about what sorts of insurance, work, and health care issues they might face. I am particularly worried, with current trends in healthcare, about the financial burden of care.

Do any of you have advice about things that your parents did to help provide you with some safety net in adulthood? Or things you wish they had been able to do?

What are the biggest concerns they might face, in terms of work, insurance, and financial security? Have any of you ever had difficulties with getting insurance coverage? What are the 'right' issues for us to be worrying about/ planning for?

 

[Debi]

How wonderful for them that you are thinking about preparing them for the future! That is a true gift. You raise terrific points about finances and insurance coverage. Given how young they are and how many changes are already happening in the health care field, it's probably not possible to know exactly what things will look like when they are adults. However, I would suggest the following:

stay on top of what's happening with insurance coverage
vote/communicate your wishes to your state and national legislators about what you want to see happen
teach your kids to pay attention to benefits when they job search (although the way things are going, it's hard to know if any employers will even be offering insurance by the time they are adults).
encourage them to maximize their education and job skills so they can either get jobs with coverage or be able to afford care on their own. The way things are today, most policies allow kids to remain covered under their parents' policies until they are 25 as long as they are in college. One large insurer has recently extended that to 30.
teach them how to find out about available government programs for prescription drugs and other medical coverage (like Medicaid, SCHIP, Social Security Disability)
arm them with the tools and the skills to advocate for themselves, and not to just take no for an answer or blindly follow what the health care community tells them
as far as work, that's tough to say. on the one hand, office work seems appropriate because it is less physically stressful. But physical work comes with the benefit that it helps keep you healthy from the exercise.
as far as how much to share with employers, that's another tough one. Personally, I have always been very open about my cf, and it has never, ever been a problem. Every job I've had has been accommodating beyond my wildest imagination. But I've read that others have been let go or not hired if they've even hinted about having a problem. I guess I would just make sure your children know the pros and cons and all the potential consequences.
help them learn about finances - budgeting, saving, etc.
while they will want to maximize their incomes, remind them that loving your work, whether in the home, outdoors, at an office, etc, is ultimately healthier than being miserable.

In general, unless they work for larger companies or the government, they will probably have a tough time getting comprehensive health insurance coverage until major changes are made to the health insurance industry.

I work full-time for my state's Medicaid program and have awesome coverage. I have strong personal opinions about what should be done, but I don't think this is the appropriate place for those.

Again, I applaud you for thinking about all aspects of their future. My fervent wish is that, by the time they are adults, medical breakthroughs and advances in covering the costs of care will mean they have nothing to worry about except finding a mate and buying a house.

Debi
54 w/cf

 

[Allie]

Encouage government jobs lol. Actually, there are a lot of jobs where they have to be included in the group plan, just make sure they ask about it when they interview. Around where I live, teaching would be a great profession for someone with CF, since the insurance here is good, and you get 3 months off. But Ry was a computer guy, and his company was great about working with him to help get the best health, for both of them.

I would say just always be open and honest with them. Everyone will have a different fight. Ry's was finding a decently priced, acessible apartment in town. Some other child might have trouble finding a mate. I knwo people struggling to find insurance. Just be there for him. <img src="i/expressions/face-icon-small-smile.gif" border="0">

 

[izemmom]

Laura, Thanks for posting this. I have thought about this a lot, too. Thanks Debi for the advice, and Allie, too! I hope we get more responses!
Bump!

 

[anonymous]

My parents always encouraged me to aim high. One thing we didn't do was attend any support groups or things like that because so often that is the environment where you hear the worst case scenarios and all the scary stuff. My pediatrician continually reminded them (and me) that the CF experience can be quite different for everyone. One of the most important things is to listen to your body.

My mom attended my doctor appointments with me until I was old enough to drive to them myself. When I was in 5th grade(which is when I started going to a CF Team Clinic) my parents and doctors prodded me to be more independent about my own healthcare. I had be the one to call the doctor if I wasn't feeling well and explain what was going on. I had to answer the questions about my meds and know what they all did. I'm so thankful that I had several years of "training" before I was completely on my own.

In general I am a type-A personality, so it naturally followed that I wanted to do things on my own without assistance. Sometimes this was to my detriment. When I was rebellious and didn't take my meds as a teen, my parents explained in painful detail how expensive those meds are and why they are so important.

My parents encouraged hobbies and extracurricular interests that would work well with my health. Instead of PE in jr. high and high school, I played in the band. This was a way for me to avoid being out on the lawn where I'd get wheezy, but still get the same lung exercise as if I was running around. I played French horn (excellent for sustained breathing!) and trumpet from the time I was 11 until now. I also took piano lessons and twirled baton. Each of those things enabled me to participate in things that wouldn't harm my health. They also shaped me into a well-rounded individual.

My parents impressed upon me the importance of having a good education--particularly good math skills. I enrolled in the "tougher" courses my small school had to offer and graduated with honors. As a senior I had the chance to choose between 2 electives--psychology and "family living". I don't know if it was because my parents didn't want me to get my hopes up about one day having a family of my own, but they said I was to enroll in psychology. Incidentally, that was a MUCH better choice when it came to applying for college.

Another way that I was prepared for life as an adult was to learn how to cook for myself and how to meet my caloric needs to remain healthy. I think I was preparing meals for myself and my family by the time I was 13.

When it came time to go to college I chose based on location to my healthcare team. Fortunately, this also happened to be the college I'd wanted to attend all along! For my first year of school, I commuted, and I'm glad I did. I felt independent, but I didn't have to make so many adjustments right away. After my first year I lived in an apartment with 3 girls I knew from high school. In order to prepare me for such a dramatic change as I moved forward to adulthood, my parents made appointments for me to see a psychologist. Initially I hated it. I felt like a freak--seeing mental health professionals carries such a stigma. But now that I look back on it, that was one of the best things for me. She helped me sort through my thoughts about dating and when to tell someone (friend or date or professor) that I had CF.

The most valuable lessons my parents taught me that helped me trasition from childhood to adult are as follows:

1) Everyone has challenges in life. Mine is CF
2) Who I am is a result of my character
3) Know my limitations and make plans accordingly.
4) I am the only one who can be fully responsible for managing my health because I am the only one who knows how I'm feeling at every moment.

I am 26 years old, married for 3 years, and I'm a college graduate. I work a full-time job as an environmental scientist. Just like anyone else with CF, some situations and diagnoses scare me, but I don't dwell on it. I do the best I can with what I've got and that has made my life fulfilled and meaningful.

-lightNlife

 

[anonymous]

One thing you can do is make sure they are active now & that they remain active into adulthood. I think exercise is an important part of battling CF and keeping those lungs strong. These days it's so easy for kids to park in front of the TV, computer, game boy, etc and not get outside & be active!
As has been mentioned, finding a larger company with health insurance offered is good. They have to offer it to everyone, regardless of health issues.

 

[lightNlife]

You may want to consider subscribing to "the CF roundtable" which is a wonderful resource for adults with CF. At first you and your husband may not want to share it with the kids, since most of it won't apply to their current stage in life, but if you two were to read it you would get a good overview of how to handle things like insurance, job hunting, life skills, etc.

In fact, their next issue (due out in November I believe) will be covering the topic of transitions.

<a target=_blank class=ftalternatingbarlinklarge href="http://cfroundtable.com/">Visit their website here to read samples of the newsletter's content. </a>

 

[Ratatosk]

We've started setting aside money in a savings account for DS. Little bit here and there -- it started as part of the vest fund in case our insurance only covered 80% of the costs. The intent of this account is for future medical expenses. At some point we need to have documents drawn up to turn it into a true medical savings account. It's our understanding that we need to have an attorney do that part.

And I think about the future with health insurance. DH and I will probably continue working at the same place. Currently I have a single policy which is paid 100% by my employer. DH gets 75% of a family policy paid by his employer. We have a $2 million max on our insurance, so if need me and DS gets close to that, then we'll look at switching him over to my insurance and there could be a waiting period for a prexisting condition. So we may need to time it, so he's doubled up on our insurance. Hopefully that'll be a long long time from now, if ever.

 

[anonymous]

Encourage them to marry well. Believe it or not, this is still one of the most important decisions they will ever make - cf or no cf.

 

[anonymous]

I am going to paste here info from another thread I replied to about "Hospital income policies" as I think it highly relates to parental information than make a tremendous difference in the financial strains both you face as the parents, and your child will face as an adult: (sorry if you read this twice...)

I'm so glad someone is posting about this... my husband and I stumbled across these about 6 1/2 years ago and I'm not exaggerating, it has caused our financial circumstances to COMPLETELY change. My husband is a 'sicker' CF - numerous hospitalizations since childhood, several near-deaths, etc... Needless to say, it's very hard for him to work full-time or go to school full-time and so I have been the one carrying health insurance for the both of us with him as my dependent.

We have about 13 different policies through all different companies, a few have already been mentioned. At first we were very poor @ the beginning of our marriage and therefore VERY skeptical of whether or not this was a gimmick... you pay a premium, wait out the pre-existing condition clause (sometimes a year, sometimes 2 years), and then as long as you have paid your premiums timely and no lapse in coverage, you send in a claim form (usually about 1-3 pages plus a copy of the hospital bill) and in about 4-6 weeks you receive a check from this insurance company. For example, some of the ones Chris has pay him $100 per day for inpatient stays - so a 14 day stay can result in $1400. Obviously, this is increased thru more policies. However, we were VERY HONEST on all the applications and completely disclosed CF and therefore waited out the pre-existing period. Some of the policies you can get through group memberships (for example, we're not pilots, but you can join the AOPA - aircraft owners and pilots association - for a annual fee just for stating that you are interested in flying). then when you are part of these 'interest groups' they contract with different insurance underwriters to offer their members hospital indemnity coverage as a 'perk'. Obviously for the average "joe" the company makes money since they never go inpatient, but for a CFer this is a dream come true.

But please understand me... DO NOT take advantage of these for 'perks' in life (we have heard of CFers using these and going inpatient more often than they need just because they want a few hundred to go on a trip or upgrade a car!?!?!?!?!?!) That is NOT US. We hate Chris going inpatient - he wants to LIVE his life. BUt we have found with all the crap that CF brings into life, this has been able to lighten our financial load of medicines, groceries and lost wages since he has been sick enough to have to go inpatient a few times per year.

To list a few companies:
- AFLAC
- Banker's LIfe & Casualty
- LIfe INvestor's
- National Benefit Life
- Physician's Mutual
- Union Fidelity Ins.
- Woodmen of the World
- Join Good Sam's Auto Club and you can get a policy as a 'perk'
- get a Sears card and you can get a policy through their company

I know there have been others that Chris has found online just through a lot of searching and phone calls. Some have gone out of business over the years, and so we no longer have those. Some have changed insurance underwriters to combine with another policy we happen to have, and so we have lost that one if they have a clause stating that you can have "x" amount of daily benefit.

Again, if your motives are pure, I highly suggest utilizing these resources - they actually work. You just have to make quite a sizable investment for the first year or two to wait out the pre-existing clause. When in doubt, always disclose CF - you don't want to waste premiums on a company that is going to give you a hassle come payout.

Good luck & to any CF parents out there... this could have completely saved Chris' parents a LOT of debt when he was growing up with major medical expenses and cruddy insurance.

***NOTE TO CF PARENTS: When we told Chris' parents about these, they thought we were kidding since they thought NO ONE would pay for someone to go in the hospital. But they actually do exist if you can fork over the money to wait it out. Many of the policies that CHris and I have signed up for as adults had the same benefits for the policyholder's dependents - so a mother or father could take out the same policy and receive payments from a child's hospitalization.

OBVIOUSLY, I hope no one on this forum would be immoral enough to trade unneeded hospitalization for extra cash, and hopefully many CF kids are healthy enough not to even have to THINK about hospitalization til later in life. My Chris is not that lucky and so the reality is that we know he's sick enough to utilize them.

Best of luck to all you CF parents, and I agree with a post before "encourage them to marry well" My Chris is everything to me and I will never stop loving him.

Interested to know if anyone else has had success with these,
Elizabeth M.
Houston, TX
wife of 7 years to 29 year old Chris with CF

 

[anonymous]

Check with the Independent Living Center in your area (google to find). They know what's available for disabled adults now (re insurance and such). And they may well be working to improve things. Also, the best thing you can do in the long run is to teach your kids (as teenagers) where to go for information and help OTHER THAN you. The ILCs are a great resource for adults with disabilities (including CF).

 

[tleigh]

it is neat that you are thinking ahead and wanting to purposefully
impact your child's life for the future.  one thing i really
appreciate about my folks is that CF was never allowed to be an
excuse.  yes, maybe we had to modify things or not participate
in certain activities, but it never became an "out"!
 CF is what makes me me; unique and special-it was something
they encouraged me in.  Similar to lightNlife i was
responsible for  knowing what i needed to do as far as meds,
treatments, etc.  Course they were on top of stuff too,
keeping me accountable.<br>
<br>
the other thing my parents passed on to me was to be a
knowledgeable and informed patient about the things i was facing.
encouraging me to ask lots of questions to my docs, and if the
answer was not complete or made sense, to ask others.  to be
willing to not swallow hook, line, and sinker everything the doctor
said-but to evaluate it for myself.<br>
<br>
encourage your child to dream big.  i just recently had my
30th birthday and faced quite a challenge.  i had never
expected to live this long-so dreaming about old age, retirement,
places i would like to go, things i would like to experience-i am
doing that dreaming now!<br>
<br>
CF does not have to be a death sentence.  With the support and
encouragement of my family, and the hope and security my faith
provides-i can confidently say i am enjoying my life.

 

[southbound]

encourage psychological care as well.

 

[southbound]

encourage psychological care as well.

 

[southbound]

encourage psychological care as well.

 

[hopesiris]

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[hopesiris]

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[hopesiris]

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[hopesiris]

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[hopesiris]

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