Re: Scary Future....

[Guest guest]

Andy,

CMT can also react to stress. Right now you have a job in a time where people

are losing everything they own. Gasoline prices will go up by summer , as they

climb you will also have higher energy bills. Food is up and I don't think it

will go back down. All it takes is one emergency to wipe a small savings

account out. It could be car repairs, a new roof, plumbing problems etc.

Good stress and bad stress.

Years ago I met a woman that was in a wheel chair completely unable to walk.

She had MS, her son was 6 or 7 he was in a wheel chair unable to sit up or feed

himself .I forget what he had but he was blind and paralyzed from birth. She

had a tow line from wheel chair to wheel chair to move her son around.

Her husband left her when the their child was born. He situation. This mom did

what ever she could do to keep her son in her home, it

was stressful he was a really sick kid but it was good stress. What was even

more amazing is that she was a marriage and family counselor out of her home.

I think of her often and wonder how she had her son are doing.

[Guest guest]

Andy,

 

I think you may be confusing SSI and SSDI.  SSDI isn't based on your education,

your assets or your income.  It's based on your lack of ability to work and how

much you've earned in the past.  It's the SSI benefit that's for low income

situations.  In other words, if you apply for and are granted SSDI, you don't

have to sell your car or reduce your assets.

 

To calculate what your SSDI benefit might be, you can look at the online

calcuator.  http://www.socialsecurity.gov/planners/benefitcalculators.htm

 

If you have a pension plan through a state or federal job, you may NOT be

eligible for SSDI.  Is that your situation?  Is that why you are thinking about

the SSI benefit as your only option?

 

Do you have any kind of short term disability benefit through your state or your

employer?  If so, you may qualify for a short term disability benefit until the

SSDI benefit kicks in.

 

If you work for an employer who has 'good benefits', it's very possible you have

a short term disability program that may help you with partial disability.  In

other words, let's say you can only work 20 hrs a day, the partial disability

benefit would pay a significant portion of the other 20 hours, to keep you

working part-time rather than not at all.  In these situations, you may be able

to cut back to 20 or 30 hours and still maintain insurance benefits.

 

As for dependent benefits, yes, if you qualify for SSDI, your daughter may also

receive a benefit. http://www.socialsecurity.gov/dibplan/dfamily4.htm

 

As for health insurance, after you are on SSDI for 24 months, you are eligible

for Medicare.  Until then, you can take COBRA or, some employers will even

continue your active health coverage.

 

I think you need to make some phone calls to Social Security and to your

employer's HR department to really understand your options, especially your

employer's part-time disability options.

 

Once you are no longer able to work, it would be good for you to move closer to

family members, if you are able.

 

[Guest guest]

Andy:

I have some choices that you might take: Because you have a disability, you are

allowed to go on Medicare. SS does not look at your finacial history for

Medicare. Since you work full time and are not able to go on SSDI, I would

check out how much Part B benefits would be for you. Also you would have Part D

benefits too to pay for your medications. Do you use adaptive devices to get

around? Check with a physical therapist to educate yourself what are the best

ones to use for yourself. When it comes time for you to use a wheelchair or

motor chair, both of your health insurances, meaning the insurance from your

employer and Medicare can pay for either or both up to full amount. I have a

wheelchair and motor chair. I used my husband's employer insurance and my

Medicare. Both insurances paid for my motor chair fully but I have to pay a

small portion for my wheelchair.

Marin

[Guest guest]

Andy,

The words " scary future " tells me about your fear. Everyone has fear

of the future, or uncertainty, of the unknown - even people without

CMT. This nation is in a serious depression. Joblessness,

foreclosures, so many without health insurance, etc. But fear can be

overcome, even with CMT. Experiencing fear is normal, however projecting that

fear is not. Fear, worry and anger can cause undue stress, which we know makes

CMT worse.

I say this out of my experience, with CMT and without. I can't advise

you financially, but a few thoughts and suggestions:

1. If you are still falling with the AFOs, perhaps it is time to try

using a scooter, both at work and home.

2. You are extremely fortunate to have a job, a job you like, a job

that you're good at, not to mention full medical coverage. Read any

major newspaper each day about the millions who aren't as fortunate.

It is a new year and your health insurance starts anew. Get a check

on your AFOs to make sure they are working right, get new ones if

needed, perhaps inquire about assistive devices for your hands/arms and inquire

about getting a scooter.

3. Talk to the Human Resources people at your place of employment for

accommodation, ergonomic support, or even the option of working either part-time

or full-time at home.

4. Pay off all credit card debt now. Then pay the car off. Or sell the car and

get the junker now. Consider sharing your apparment with a roomate, or get

another apartment and find a roomate. Save the $ from rent, cc debt, car pymets,

etc. into an 'emergency fund'. Look into the advice and wisdom of at

http://www.suzeorman.com

for some down to earth reality lessons.

5. You are somewhat right about SSDI. A work history of 15 years (at

least) is one requirement. You must be able to document this. And yes, when

reviewing whether or not you are *unable to work* SS will take into

consideration your educational level. A Vocational Expert may determine that

with work accommodations, assistive technology, etc., that you *are* able to

work. However, if you truly believe that you are *unable to work* at all now,

because of the physical progression of CMT, then apply for SSDI.

SSDI will never equal what your paid salary is. You will need to live with alot

less, cut expenses more, and have some sort of income while your application is

in process (average 1-2 years). Medicare insurance with SSDI does not begin

until 2 years * after * you have been awarded benefits. So you will need some

kind of health insurance to cover your needs during that time period. As a

disabled father, your daughter may be entitled to some benefits also.

6. Consider meeting with a Life Coach/or Spirtual Advisor who can help engage

you into planning and positive thought, eliminate the stress of fear, worry and

anger, and create a place of acceptance and serenity in your mind.

Gretchen

[Guest guest]

Hi ,

Thank you much for the information.  I do have a pension but won't be eligible

to get it until I am 60 and I am only 33.

I do not have the luxury of having family to lean on so that is never an option.

I can use temporary leave but that is the premise of returning at some point.  I

can not adjust my schedule to less hours per my contract cause I am a state

employee and a supervisor so it comes down to all or nothing.

I will look at the link u provided thanks much

Andy

[Guest guest]

Hi ,

Thanks for the information.  Actually I have tried for 2 years to find a PT that

will recommend adaptive devices including the MDA none who would even see me

more then once and I was told they do not prescribe or recommend adaptive

devices mostly for liabilty and the MDA told me I was as good as I will ever be

and just keep up what I am doing.  They would not take me on as a patient.  Its

a huge frustration in my life right now so I gave up on doctors I feel I have

exhausted all my resources....

Andy

[Guest guest]

Amy,

Thank you so much   I appreciate the information and your support.  I might

not qualify for pharmaceutical assistance because I make over $65 K a year at

the moment.  I will have to look to cut back on certain things and get things in

place when I get ready to apply.

Andy

[Guest guest]

Gretchen,

You are extremely wise when it comes to these issues I always appreciate your

input and I agree with what u said.  I will keep all those things in mind. 

Currently I am seeing a doctor about new braces but he is the 3rd guy I saw and

so far none can figure out anything that can help better then what I have now. 

I am glad he will see me again and try again no one else would so I am trying to

stay positive.  I am fortunate I have a great job with full benefits I know its

hard out there with this economy.  We have a person who soley does ADA

accomodations but that was a disaster when he tried to force an accomodation on

me.  I work in an office and everything is ergonomically correct.

Andy

[Guest guest]

Andy:

That makes no sense that the PTs you have seen will not test your strength level

or suggest what addaptive device you should use. That is their job. Why be a

PT then? Have you gone to a local hospital that has a physical therapy

department? I would start getting nasty with whoever you meet and demand your

rights. You really need to advocate for yourself because of your situation.

[Guest guest]

Andy,

 

Have you spoken with anyone in your HR department?  Based on your responses, I

still sense some misunderstand here.

 

For example...

 

1.  STD - The purpose of short term disability (STD) isn't simply to provide a

benefit for a temporary event.  It's also to provide coverage for the time

period between when you stop working and when your long term disability (LTD)

benefits kick in.  Frequently, an employer's short term and long term policies

are intentionally matched so that the STD policy pays benefits until LTD

benefits begin, i.e. 180 days.  In other words, the STD plan pays for the first

180 days, then stops.  Then the LTD plan starts paying.

 

If you have an LTD benefit...prior to the end of the 180 days, the LTD carrier

would likely notify you that you are required to also apply for SSDI.  This

doesn't mean you would get a double benefit from your employer's plan and SSDI. 

It just saves the LTD carrier money.  Example = you are eligible for a

$40,000/yr LTD benefit.  If SSDI pays you $30,000, then the carrier only has to

pay $10,000.

 

The purpose of having Short Term and Long Term Disability insurance is so that

you always have some income in the event that you are no longer able to work. 

Most large employers (including governmental agencies) carry both coverages. 

Others rely on State short term disability and federal SSDI to cover their

employees.  Either way, you likely have a short term benefit to get you through

a few months until some kind of long term benefit kicks in. 

 

2.  PENSION - The reason I asked about a pension is because there is a

'double-dipping' restriction for state and federal employees aka WEP.  If you

are eligible for a pension, you may not be eligible for Social Security also. 

It's one or the other, i.e. no double-dipping.  However, just like Social

Security has disability benefits, many pension plans also have early payouts for

those who become permanently disable.  Have you asked about this?  It's very

possible that you can elect a payout option once your permanent disability is

established.  Given your age, the payout may not be much, but you could elect a

lump-sum and invest it as you see fit.  Similarly, most retirement plans have

distributions and/or early payouts when someone becomes permanently disabled,

i.e. 401K, 403B, Stock Plans, etc.  The distributions may be taxable, but at

least early withdrawal penalties won't apply. 

 

3.  PART-TIME WORK - Most employers require that their employees work 40 hours

and this isn't optional, so your situation is certainly not unique.  However,

the rules are different for active employees vs disabled employees if the

employer has a short term and/or long term disability plan.  If you are eligible

for a short term or long term disability plan, it's very possible your employer

has a partial disability program built-in.  The purpose is to encourage you to

work as many hours as you can, rather than forcing you to go out on full

disability.  Most contracts now include these feature.  However, the terms and

definitions differ from contract to contract, so get a copy of

your disability certificate booklet and take a look.

 

Again, I highly recommend that you contact the HR department, explain your

situation and ask if they can help you understand your options.  Frequently, HR

staff don't even understand all of the programs completely.  You may need to

talk to specialists from several departments, i.e. STD, LTD, pension, 403B plan

(if applicable), etc.  Most large employers have separate departments for each

of these benefits.

 

I also agree with Gretchen about the scooter.  It may help.  I know you've had

problems getting a prescription for this in the past.  Do you have a treating

neurologist?  I know that the MDA hasn't helped you.  Many

facilities/universities and even MDA sites act more like a consultant rather

than primary treating physicians.  You need a neurologist who is willing to take

you on as a regular patient and support you in necessary things, like writing

letters to your insurance company for assistive devices like

scooters/wheelchairs and also filling out disability paperwork (when the time

comes).  A private practice neurologist may be more helpful in this regard than

an MDA or university physician.  I know you've given up on doctors, but it's

very difficult to get what you really need without a primary neurologist to

assist you.  To find one in your area... http://www.abms.org/

 

Another option for helping with the cost of a scooter is to utilize your

Flexible Spending Account (FSA) benefits to pay for it, if you have this

benefit.  You will still have to pay for the scooter, but at least it will be

tax free and you pay a little out of each paycheck instead of lump sum. 

 

As for family, if you have no family members in the country willing to help you,

another possible option may be your daughter's maternal grandparents.  If that's

an option, it may be a great source of help to you.  Having a one year old isn't

easy.  A relative of your daughter (somewhere in the country) may be willing to

assist when you are no longer able to work (assuming this creates no risk to you

of losing your daughter, of course.)  Just brainstorming here.  I know that

without extended family or good friends to help once in awhile, life is much

more difficult.  I'm truly very sorry for your situation.

 

[Guest guest]

Andy,

You mentioned you have a good job. Do you have long term disability (LTD)

through your employer? I'm 50 years old, educated and had a good professional

job. I worked full time for 22 years, but 8 years ago because of my progressing

illness, working was beyond what I could do any longer.

Because I carried LTD protection, I was and still am protected - until I'm 65.

Yes, my income is supplemented with SSDI, however it was approved in only a

couple of weeks. A doctor's good recommendation and report should help you

achieve that. And the combination of LTD and SSDI actually equals my take home

pay from before.

In addition, I'm eligible for the group health insurance through my former

employer for me and my family. Being educated has nothing to do with your

ability to work when you're disabled. As far as being at home all the time,

trust me, you do find other things to do that can fill your day, especially

having a one year old. I can't imagine there ever being a dull moment at your

home!

Working in pain and while you're disabled to the point that you can't function,

will only make your condition worse. I know about this firsthand, and probably

worked longer than I should have. My advice to you is that you apply for

disability, especially if you carry the protection through your employer. Then

you can actually focus on your abilities, not your disability. Good luck.

K.