Chat Transcripts

Moderator>

Good evening, everyone. I'm glad you all could join us this evening. This evening's chat will be moderated. This means that questions will be viewed by the moderator before they are forwarded to David to eliminate duplicate questions. Each question will appear on your screen as it is answered. There may be slight delays between questions, so please be patient.

Moderator>

We are very pleased to have with us tonight a gentleman who is an author, a healthcare provider, and a person with MS. Please welcome David Spero.

David Spero, RN:

Good evening everyone. Thanks for coming. I appreciate your giving up "Survivor" for this.

David Spero, RN:

How many of you have read my article in MS Focus?
Kate: LOL

David Spero, RN:

Well, theres a much longer, complete version on-line at http://www.mscare.org/pdf/DavidSpero-Disability.pdf You will need Adobe Acrobat to read it.

David Spero, RN:

I'm just going to give a few sentences of introduction and then open it for questions.

David Spero, RN:

Heres a more important question first, how many of you have read my book, The Art of Getting Well ?

David Spero, RN:

Well, its really good. Inside MS and MS Focus both say its great. Check out my web site at www.DavidSperoRN.com.

Kate: I

plan to...

David Spero, RN:

OK. Enough ads. Im David Spero, Ive been a nurse for 30 years, and I was diagnosed with progressive MS in 1989. Had 10 years of symptoms before diagnosis

David Spero, RN:

Ive been on SSDI disability for 1 year now. They pay me $1300 per month, and it has been an enormous help.

David Spero, RN:

It has enabled me to stay productive and have a high quality of life. I write, I lead wellness groups and support groups for people with MS and diabetes.

David Spero, RN:

And that's not unusual.. Going on SSDI is not the end of your productive life.

David Spero, RN:

I dont know how much of this I would be able to do without SSDI.

David Spero, RN:

Because of disability, I don't have to worry about being evicted.

David Spero, RN:

Or working some job that is really too much for me.

David Spero, RN:

I qualified on the basis of a combination of physical and cognitive symptoms and fatigue. It wasnt as hard as I thought it would be.

Bri> Question:

Is ssdi taxable income? st and fed both

David Spero, RN:

Answer: SSDI is basically non-taxable. But if your total household income is over $30,000 (not counting the SSDI) some of it may be taxable.

Moderator>

Feel free to submit your questions, everyone

Nancy> Question:

They say I'm four points short of being able to collect SSDI any thing I can do about that I have SPMS

David Spero, RN:.

Answer: You can appeal. And you probably should

David Spero, RN:

There's a lot to do to prepare a good application or appeal.

David Spero, RN:

For example, fatigue and cognitive problems are the most common qualifying disabilities for people with MS.

David Spero, RN:

But they are also hardest to prove on a physical exam or an interview. So people with MS need to prepare.

David Spero, RN:

Keep a journal and write down about your symptoms and how they limit your activity. See your doctors regularly.

David Spero, RN:

Consider making written reports of symptoms and put copies in your medical records

David Spero, RN:

You have to remember youre dealing with overworked bureaucrats. You have to provide the information they need to make a decision

David Spero, RN:

letters from doctors, results of tests.

David Spero, RN:

A good letter from a doctor testifying to fatigue or cognitive problems can sometimes guarantee that an applicant will receive disability.

David Spero, RN:

letters from family, friends or anyone who has observed your daily activities can also document your disability.

David Spero, RN:

It's sometimes worthwhile to hire and advocate or attorney to help with the process.

mritter> Question:

How many times were you denied SSid before you were approved?

David Spero, RN:

Answer: I was actually approved the first time. They sent me to their own doctors because they weren't convinced.

David Spero, RN:

But when their own neuro and psycho docs saw me, I guess I qualified.

David Spero, RN:

You don't usually have to exaggerate anything, and you shouldn't. With MS, the truth should qualify you.

David Spero, RN:

But it's different in different areas.

Kate> Question:

Is it true most people are denied three times efore they get it?

David Spero, RN:

Answer: About two thirds of people are turned down the first time.

David Spero, RN:

But 75% or more eventually qualify. There are four levels of appeal.

David Spero, RN:

But try your best to document your symptoms, especially fatigue, as that may not show up on a physical.

David Spero, RN:

I've heard that having MS should automatically qualify you, but I haven't seen that in writing anywhere.

David Spero, RN:

It might be helpful to keep a "fatigue diary."

David Spero, RN:

You can download one from Paralyzed Veterans of America www.pva.org. Select search and type in fatigue diary.

Kate> Question:

I feel like I need to give up working from the fatigue and memory problems, but at the same time, how can I provide for my family while I apply? And if I'm turned down and it takes forever? It's really scary.

David Spero, RN: Answer:

Yes, it is scary. But you will eventually get the money.

David Spero, RN:

If the administration doesn't take all the money for something else by the time you get there.

David Spero, RN:

I would advise cutting back to part time while you're waiting.

David Spero, RN:

The very fact that you CAN show up 40 hours a week will work against you.

David Spero, RN:

Perhaps you can get some help from family members. Actually, a lot of credit cards are giving out interest free cash advances up to $30000 now.

David Spero, RN:

What I said about "the administration" was sort of a joke, sort of.

David Spero, RN:

Medicare and Social Security are running short on money, though.

David Spero, RN:

But they won't run out anytime soon.

David Spero, RN:

Kate, you will feel a lot better when you cut back or get your disability.

Moderator>

For those who are joining us late, you can click on the transcript button on the top right of your screen to view the discussion so far (looks like an ink bottle and feather pen). Please feel free to submit your questions.

David Spero, RN:

It will take a lot of stress off you and enable you to take care of your body.

David Spero, RN:

And your children.

David Spero, RN:

It's also a good idea to get a neuropsychologist evaluation every couple of years and before you apply.

David Spero, RN:

They can document your fatigue and cognitive problems better than anybody.

David Spero, RN:

The more records you have from doctors, and the more other documentation you can provide, the better your chances of getting through the first time.

Kate> Question:

I just worry about where the money is going to come from in the meantime. I'm a single mom with three kids, and I have to put a roof ove there heads

David Spero, RN:

Answer: Kate, is there anyone you can ask for help?

David Spero, RN:

Can you get on short term disability in the meantime? Or welfare?

Kate> Question:

Not really

David Spero, RN:

Answer: Or ask at your church for a little help? Or friends, family or relatives?

David Spero, RN:

It's a tough situation, Kate. Try to get everything in order to get through the first time. Remember, your SSDI starts from the day you became disabled. They have to give you all the money as a lump sum, even if it takes years.

Kate> Question:

I haven't really looked into welfare. I just feel wrong about it.

David Spero, RN:

Answer: Well, you have to be off work to get disability. So there may not be another way to do it.

Kate> Question:

Thanks. I guess i have to let go of my pride and look at welfare

David Spero, RN:

Answer: It's a thought. Don't forget, SSDI is long-term disability, NOT permanent disability

David Spero, RN:

So by taking some government help now, you might be maintaining your productivity in the long run.

David Spero, RN:

And Kate, I presume you've been paying taxes as long as you've worked?

Kate> Question:

LOL. Yeah!

David Spero, RN:

Answer: So this is what it's for.

David Spero, RN:

So many people have trouble accepting help, especially government help, especially financial help.

David Spero, RN:

But people helping each other is how the world works. We need to know how to find, ask for and accept help.

David Spero, RN:

What else do people want to know about SSDI? Does anyone wonder what they'll do with their time if they're not working?

David Spero, RN:

I have a good section on this in my book.

Debbie> Question:

Yes. And I'd like to know what kinds of tests a neuropsych does

David Spero, RN:

Answer: Neuropsych testing is fun, but tiring.

David Spero, RN:

It's like doing a bunch of puzzles or IQ tests or something

David Spero, RN:

Putting together pictures, defining words, remembering lists of numbers

David Spero, RN:

When I took it, I started off cruising through and thought, "Oh, no, I'll never qualify."\

David Spero, RN:

But after about an hour, I could see how much cognitive fatigues I really had.

David Spero, RN:

It might be hard to get your insurer to pay for it.

David Spero, RN:

But SSDI may send you to one of your own, which you don't have to pay for

David Spero, RN:

I mean "one of their own."

Debbie> Question:

an hour? how long do they test you

David Spero, RN:

Answer: Usually at least an hour.

David Spero, RN:

With MS, if you don't test that long, you often won't see the problems.

David Spero, RN:

You know, we can usually do what we used to be able to do, but not for nearly as long.

David Spero, RN:

You can qualify on the basis of physical disability, fatigue, vision loss, cognitive problems, or some combination of the four.

David Spero, RN:

That "combination" is the "points" someone was talking about.

Debbie> Question:

how do they know what you used to be able to do though?

David Spero, RN:

Answer: Well, they don't really care about that. But if you can't keep up your cognitive function for more than an hour, you probably can't work.

David Spero, RN:

Fatigue and cognition are closely related.
Debbie: Oh! I see

David Spero, RN:

Yeah, the neuropsych stuff can be fun. Some people find it exhausting, but getting disability is worth a little trouble.

themis> Question:

what is the difference between SSI and SSDI? I was told that you apply for both, and then the government decides which one you qualify for

David Spero, RN: Answer:

SSDI is a federal program, based on what you have paid into the disability fund over the years.

David Spero, RN:

SSI is more of a program for very low income people. The qualification for both is the same.

David Spero, RN:

But SSDI usually pays more. But if your SSDI is too low, or if you haven't paid into it at all, then they will supplement with SSI, which is a state program.

David Spero, RN:

So again, the decision process is pretty much the same.

David Spero, RN:

The Social Security administration will decide "can you work or can't you?"

David Spero, RN:

Another tip -- usually your MS Society chapter has benefits counselors you can talk to

David Spero, RN:

I don't know if the MS Foundation has them. But find some and use them.

themis> Question:

I'm assuming as long as I have been working, I've been paying into it , right?

David Spero, RN:

Answer: Pretty definitely, Themis. There are a few jobs that don't pay into it, but if you have a FICA deduction in your check, you've been paying.

David Spero, RN:

I also want to discuss the option of working from home, along with disability.

Kate> Question:

How do they figure out how much you get? Or is it a mystery?>

David Spero, RN:

Answer: Kate, it's based on how much you have paid into the system, especially in the last few years.

David Spero, RN:

If you go to the SSA web site www.ssa.gov, you can calculate how much they will pay.

David Spero, RN:

Or you can call the Social Security office near you and ask to have a benefits sheet sent out to you.

Moderator>

A transcript of the chat will be available to you by email when we close this evening, so don't worry about scrambling to write down these great resources David is giving us!

David Spero, RN:

Remember, you can earn up to $820 per month without jeopardizing your SSDI.

David Spero, RN:

And SSDI gives you Medicare coverage 29 months after disability begins, which should be 24 months after your payments start.

David Spero, RN:

Because payments start with 5 months after you became disabled.

David Spero, RN:

Self-employment from home often works for people with disabilities or chronic illness, because they can make their own schedule and their own rules.

David Spero, RN:

And SSDI only looks at your net income (profit), which means you can deduct a lot of costs before reporting. So it's not hard to stay under $820 per month.

Moderator>

We have only a few more minutes, everyone, so get those last minute questions in! If you've been holding off, now is your chance!

David Spero, RN:

Does anyone want to know about the application process?

jccr>

Question I do!

David Spero, RN:

People can apply for disability on line at www.ssa.gov or by phone at 1-800-772-1213 or in person at a local social security office.

David Spero, RN:

There is a preliminary application form, on which applicants are asked to list their doctors and their work history.

David Spero, RN:

A few weeks later, applicants will receive a second advanced form that asks them to describe their daily activities and abilities in some detail.

David Spero, RN:

The process is emotionally draining, so its a good idea to have a friend or family member help with filling out forms.

David Spero, RN:

It's a good idea to keep records of your doctor visits, so you don't forget them.

David Spero, RN:

You don't have to worry about work history. SSA has a record of that.

David Spero, RN:

A major reason for applications being turned down or delayed is illegible handwriting.

David Spero, RN:

So get help with that if needed.

David Spero, RN:

Applicants should fill out the forms truthfully, but report what its like on a bad day, not on their best day.

David Spero, RN:

Sometimes, you need an outside person to remind you what a bad day is really like. Or someone at the Social Security office can help with the forms.

David Spero, RN:

Doctors and medical staff aren't allowed to help.

David Spero, RN:

SSA will get medical records from all doctors mentioned in the preliminary application

David Spero, RN:

Then SSA hires physicians to evaluate the application. If they have questions, they may send applicants to their own neurologist or psychologist for further evaluation.

David Spero, RN:

That's how I got my SSDI, after seeing the SSA doctors.

David Spero, RN:

About two-thirds of people with MS get turned down the first time. But you should appeal. More than 75% of us eventually win.

David Spero, RN:

But it is emotionally hard. You have to describe your symptoms and disabilities at their worst.

David Spero, RN:

That's hard, when you've been working hard to maximize your abilities and your health.

David Spero, RN:

It's OK to get professional or personal help with emotional support during this time.

David Spero, RN:

Because once you get SSDI, and it sinks in that you are not going to fall into poverty, it's like your life is starting over again.

David Spero, RN:

I've had people say it was "like I'm not sick anymore."

David Spero, RN:

Any more questions? Just one more reminder from me to check out my book, The Art of Getting Well

David Spero, RN:

Or visit my web site www.davidsperoRN.com

Moderator>

Our time is about up. Thank you everyone for joining us this evening. I hope that you all will join us tomorrow for the last in our series of webchats observing MS Education and Awareness Month. Tomorrow we will be having an open chat (no moderator) with author and MS patient Rita Glaze on Building the Right Team for Living with MS. A special thanks to David Spero for being here tonight and presenting such a wealth of information. Wasn't he great everyone? Thanks, David!

David Spero, RN:

You're welcome. Have a good night, everybody.

David Spero, RN:

Check out that article I told you about at www.mscare.org Click on articles, to get eveen more info. You can also see the article on my site.

David Spero, RN:

Thanks to MS Forum for inviting me here.

Moderator>

Thanks again, David. Good night everyone!