November 04, 2006 Meeting about the Portland Conference
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TNA’s 6th National Conference
The fist day was for the SGL’s (Support Group Leaders) and some Phone Support Callers were invited.
It was a very long day. I don’t think that I made it to a single meeting before 8:30 am and every day
started at 8:00 am and go until 5 pm!!!!!
A couple of the meetings were very important for me to go to and one was on Social Security Disability
since I have so many people asking me how to go about this procedure. The other was what the
Doctors had to say about the Emergency Room.
There is so much to write about I will put some in each of the next newsletters that I can. I took a lot
of notes!!!!
Social Security Disability
Presenter: Nicole Schneider
Schneider Law Offices
Phone # 503-255-9092
The attorney’s in this law office go all over, not just in Oregon.
It is very important to apply for SSDI (Social Security Disability Insurance Benefits)/SSI (Supplemental
Security Income), as soon as you have stopped working or realize that you will not be able to work
much longer. An attorney cannot represent you if you have not applied. So, you would want to apply
ASAP. You benefits, if you win, start from that date. Make sure that you keep a copy of everything
that you send out. If you get an attorney, make sure that you send him copies of everything and he
sends you copies of what he receives. Some attorneys will help you from the beginning (with the
application process) and some will wait until you have done the process yourself.
The phone number for Social Security office is 1-800-772-1213 from 7 a.m. to 7 p.m. Monday through
Friday. For the deaf or hard of hearing the number is 1-800-325-0078.
Because SSDI is Federal income, attorneys don’t get paid by the hour. You and the attorney will sign a
form 1696 (appointment of representation form). Congress mandated this fee, so the first administrative
hearing before ALJ (Administrative Law Judge) is 25% on back benefits only, with a cap of $5300. If
the claim goes beyond ALJ level, it’s 25% of the back benefits and there is no cap. If you do not win,
there are no attorney’s fees.
From the time you have requested a hearing it takes approximately 2 years after filing the Request for a
Hearing to actually have a hearing. And the backlog is getting worse. You can contact your attorney to
inquire about a hearing being sooner but that list of possibilities is very short. Terminal illness, you don’t
have money for vital medications, life-sustaining medical treatments, worsening medical conditions and
medical proof of this worsening condition and there are some others.
Very few get through the application without being turned down. You can appeal and be turned down
again. It’s a long process and it takes time and patience. You also don’t need to have an attorney if you
want to do this process on your own. I did, and I won my benefits. I didn’t have to give any money to
any attorney.
It is very helpful if you have a doctor who is on your side. I had a doctor that said there was nothing
wrong with me. The judge found out otherwise from the Disability doctors. There was a lot of
legwork that I had to do. I went down to the San Diego Office and copied any and all the papers that
were in my file for my files and to make notes for the judge. This is not an easy task.
If you have an attorney, make sure that you both have a copy of the denial papers. They will be sent to
you and you send your attorney a copy.
Ailments That May Qualify for Benefits
· Severe asthma or emphysema
· Heart conditions and high blood pressure
· Cancer
· Diabetes
· Morbid obesity
· Epilepsy
· Lower back problems, cervical (neck) problems
· Chronic Pain Syndrome and Chronic Fatigue Syndrome
· Arthritis and fibromyalgia
· Autism and Asperger's Syndrome
· Schizophrenia
· Post-Traumatic Stress Disorder
· Clinical Depression
· Paralysis
· Mental Retardation
· ADD / ADHD (attention deficit and hyperactivity disorders)
Don’t be discouraged if your illness is not listed. This is not a complete listing. Do you have a severe
impairment? TN surely is severe!!!! And may not be completely treatable in all patients when
complications arise. Severe = more than a minimal effect: on a claimant’s ability to do work-like
activities (e.g. lift, carry, sit, stand, walk, remember, concentrate, stay on task, keep up a pace) SSR 85-
28. There is not a listing for TN but it can be equal to another listing in severity. Use the listing 12.04
(depression).
On the following website: http://web.tampabay.rr.com/lymecfs/shortimpair.htm is an unofficial listing of
the impairments. I have been looking for the list on the http://www.ssa.gov, but haven’t been able to
find it. I know it’s there since I have seen it. There is a LOT of information at this website.
Follow doctor’s decision on medications and don’t over take meds.
Once you are on SSDI and/or SSI any children under the age 19 can receive SSI whether they are living
with you or not. Your unmarried child, including an adopted child, or, in some cases, a stepchild or
grandchild. The child must be under age 18 or under age 19 if in elementary or secondary school full
time; and your unmarried child, age 18 or older, if he or she has a disability that started before age 22.
(The child’s disability also must meet the definition of disability for adults.)
After you start receiving disability benefits, you may want to try working again. There are special rules
that help you keep your cash benefits and Medicare while you test your ability to work. These rules are
called “work incentives” or “employment support” programs.
How your earnings affect your Social Security benefits
“During the trial work period, there are no limits on your earnings. During the 36-month extended period
of eligibility you usually can make no more than $860 a month or your benefits will stop. But, the work
expenses you have as a result of your disability are deducted when we count your earnings to see if they
can help you keep more of your benefits. If you have extra work expenses, your earnings could be
substantially higher than $860 before they affect your benefits. This substantial earnings amount usually
increases each year.
They deduct work expenses related to your disability from your earnings before they determine if you
are still eligible for benefits. These expenses may include the cost of any item or service you need to
work, even if the item or service also is useful to you in your daily living. Examples includeprescription
drugs, transportation to and from work (under certain conditions), a personal attendant or job coach, a
wheelchair or any specialized work equipment.”
The bottom line for preparing for a winning claim is, you have to have proof of you disability. Be
objective, timely, sufficient, and accurate (nothing that is contradictive, easy to read and understand. Be
consistent, compelling (taking evidence to make it a whole). Are your claims credible? Show how it
effects in daily activity. Point out what you use to do and what you can’t do now. What you DO
carriers more weight than what you SAY.
What medical evidence you have, diagnosis, records containing objective information, sufficient data, list
of medications and the effects that they have on you (do they make you drowsy, etc.), medications that
work or don’t work.
List of treatments and effects (anything that you have tried, if it worked or not), functional capacity,
evaluations, bring educational information about your disability. Write to your doctor what your problem
is and tell him he can use any part. You can submit anything that you want not just what papers they
gave you for the SSDI.
List your employment and earnings (keep all pay stubs), your job description (what all you do, lifting,
multi-tasking, etc.), performance reviews (these show you were a good worker, employee handbook
(what were your benefits), records of moneys received after you became disabled, records of all days or
times you were unable to work.
Declarations – your statement, declarations from witnesses (a letter).
When you go before a judge just look normal, don’t dress up. Don’t expect it to be easy. State what
you could do before and what you can’t do now. Have a log or journal. Any other evidence that would
go along with your case that may not be listed on the forms. Have a pain diary and bring it with you,
copies of documents regarding your case, calendar of doctor’s appointments. Photos or physical
evidence and anything else that will help prove you are eligible for benefits.
Set up a filing system early on – get folders and tabs of different colors. Don’t leave your case to
chance. Remember that your best chances of winning your case are in the early stage of filing. Put
your best case first.
“Persistence is power” Jeanne Lazo
Pain Management for TN in the Emergency Room – Presenter Dr. Jeffrey Cohen
Avoid the Emergency Room unless there is no other choice. Take medications as prescribed and do
NOT self medicate. Strongly consider having that procedure so that maybe you won’t have that crisis.
There may be a special medication for a situation.
Have documentation from your doctor that is treating your pain on letterhead what the condition is.
Have the doctor call the ER ahead of time so that he can let them know everything.
Fosphenytion is better-tolerated and best to use. It is a prodrug that is metabolized to phenytoin and
administered parenterally for the treatment of seizures. IV Keppra is for people who are allergic to
Dilantin and is not metabolized in the liver. Sumatripitan is used to treat migraine headaches.
Have a plan. Use eye drops like what the eye doctor uses “tetracaine”. This is white, water, soluble,
crystalline solid used mostly as an anesthetic.
I asked if the medical department looks at the Medical Alert Bracelet or am I just wasting my money?
Yes, and you MUST keep it up to date. You can call or go on-line to keep your doctors, medications,
and person to call, etc. It’s very easy. http://www.medicalert.com/home/Homegradient.aspx or you
can call 1-800-432-5378. Anyone who is on meds, should have a bracelet.
Return to Home Page
The fist day was for the SGL’s (Support Group Leaders) and some Phone Support Callers were invited.
It was a very long day. I don’t think that I made it to a single meeting before 8:30 am and every day
started at 8:00 am and go until 5 pm!!!!!
A couple of the meetings were very important for me to go to and one was on Social Security Disability
since I have so many people asking me how to go about this procedure. The other was what the
Doctors had to say about the Emergency Room.
There is so much to write about I will put some in each of the next newsletters that I can. I took a lot
of notes!!!!
Social Security Disability
Presenter: Nicole Schneider
Schneider Law Offices
Phone # 503-255-9092
The attorney’s in this law office go all over, not just in Oregon.
It is very important to apply for SSDI (Social Security Disability Insurance Benefits)/SSI (Supplemental
Security Income), as soon as you have stopped working or realize that you will not be able to work
much longer. An attorney cannot represent you if you have not applied. So, you would want to apply
ASAP. You benefits, if you win, start from that date. Make sure that you keep a copy of everything
that you send out. If you get an attorney, make sure that you send him copies of everything and he
sends you copies of what he receives. Some attorneys will help you from the beginning (with the
application process) and some will wait until you have done the process yourself.
The phone number for Social Security office is 1-800-772-1213 from 7 a.m. to 7 p.m. Monday through
Friday. For the deaf or hard of hearing the number is 1-800-325-0078.
Because SSDI is Federal income, attorneys don’t get paid by the hour. You and the attorney will sign a
form 1696 (appointment of representation form). Congress mandated this fee, so the first administrative
hearing before ALJ (Administrative Law Judge) is 25% on back benefits only, with a cap of $5300. If
the claim goes beyond ALJ level, it’s 25% of the back benefits and there is no cap. If you do not win,
there are no attorney’s fees.
From the time you have requested a hearing it takes approximately 2 years after filing the Request for a
Hearing to actually have a hearing. And the backlog is getting worse. You can contact your attorney to
inquire about a hearing being sooner but that list of possibilities is very short. Terminal illness, you don’t
have money for vital medications, life-sustaining medical treatments, worsening medical conditions and
medical proof of this worsening condition and there are some others.
Very few get through the application without being turned down. You can appeal and be turned down
again. It’s a long process and it takes time and patience. You also don’t need to have an attorney if you
want to do this process on your own. I did, and I won my benefits. I didn’t have to give any money to
any attorney.
It is very helpful if you have a doctor who is on your side. I had a doctor that said there was nothing
wrong with me. The judge found out otherwise from the Disability doctors. There was a lot of
legwork that I had to do. I went down to the San Diego Office and copied any and all the papers that
were in my file for my files and to make notes for the judge. This is not an easy task.
If you have an attorney, make sure that you both have a copy of the denial papers. They will be sent to
you and you send your attorney a copy.
Ailments That May Qualify for Benefits
· Severe asthma or emphysema
· Heart conditions and high blood pressure
· Cancer
· Diabetes
· Morbid obesity
· Epilepsy
· Lower back problems, cervical (neck) problems
· Chronic Pain Syndrome and Chronic Fatigue Syndrome
· Arthritis and fibromyalgia
· Autism and Asperger's Syndrome
· Schizophrenia
· Post-Traumatic Stress Disorder
· Clinical Depression
· Paralysis
· Mental Retardation
· ADD / ADHD (attention deficit and hyperactivity disorders)
Don’t be discouraged if your illness is not listed. This is not a complete listing. Do you have a severe
impairment? TN surely is severe!!!! And may not be completely treatable in all patients when
complications arise. Severe = more than a minimal effect: on a claimant’s ability to do work-like
activities (e.g. lift, carry, sit, stand, walk, remember, concentrate, stay on task, keep up a pace) SSR 85-
28. There is not a listing for TN but it can be equal to another listing in severity. Use the listing 12.04
(depression).
On the following website: http://web.tampabay.rr.com/lymecfs/shortimpair.htm is an unofficial listing of
the impairments. I have been looking for the list on the http://www.ssa.gov, but haven’t been able to
find it. I know it’s there since I have seen it. There is a LOT of information at this website.
Follow doctor’s decision on medications and don’t over take meds.
Once you are on SSDI and/or SSI any children under the age 19 can receive SSI whether they are living
with you or not. Your unmarried child, including an adopted child, or, in some cases, a stepchild or
grandchild. The child must be under age 18 or under age 19 if in elementary or secondary school full
time; and your unmarried child, age 18 or older, if he or she has a disability that started before age 22.
(The child’s disability also must meet the definition of disability for adults.)
After you start receiving disability benefits, you may want to try working again. There are special rules
that help you keep your cash benefits and Medicare while you test your ability to work. These rules are
called “work incentives” or “employment support” programs.
How your earnings affect your Social Security benefits
“During the trial work period, there are no limits on your earnings. During the 36-month extended period
of eligibility you usually can make no more than $860 a month or your benefits will stop. But, the work
expenses you have as a result of your disability are deducted when we count your earnings to see if they
can help you keep more of your benefits. If you have extra work expenses, your earnings could be
substantially higher than $860 before they affect your benefits. This substantial earnings amount usually
increases each year.
They deduct work expenses related to your disability from your earnings before they determine if you
are still eligible for benefits. These expenses may include the cost of any item or service you need to
work, even if the item or service also is useful to you in your daily living. Examples includeprescription
drugs, transportation to and from work (under certain conditions), a personal attendant or job coach, a
wheelchair or any specialized work equipment.”
The bottom line for preparing for a winning claim is, you have to have proof of you disability. Be
objective, timely, sufficient, and accurate (nothing that is contradictive, easy to read and understand. Be
consistent, compelling (taking evidence to make it a whole). Are your claims credible? Show how it
effects in daily activity. Point out what you use to do and what you can’t do now. What you DO
carriers more weight than what you SAY.
What medical evidence you have, diagnosis, records containing objective information, sufficient data, list
of medications and the effects that they have on you (do they make you drowsy, etc.), medications that
work or don’t work.
List of treatments and effects (anything that you have tried, if it worked or not), functional capacity,
evaluations, bring educational information about your disability. Write to your doctor what your problem
is and tell him he can use any part. You can submit anything that you want not just what papers they
gave you for the SSDI.
List your employment and earnings (keep all pay stubs), your job description (what all you do, lifting,
multi-tasking, etc.), performance reviews (these show you were a good worker, employee handbook
(what were your benefits), records of moneys received after you became disabled, records of all days or
times you were unable to work.
Declarations – your statement, declarations from witnesses (a letter).
When you go before a judge just look normal, don’t dress up. Don’t expect it to be easy. State what
you could do before and what you can’t do now. Have a log or journal. Any other evidence that would
go along with your case that may not be listed on the forms. Have a pain diary and bring it with you,
copies of documents regarding your case, calendar of doctor’s appointments. Photos or physical
evidence and anything else that will help prove you are eligible for benefits.
Set up a filing system early on – get folders and tabs of different colors. Don’t leave your case to
chance. Remember that your best chances of winning your case are in the early stage of filing. Put
your best case first.
“Persistence is power” Jeanne Lazo
Pain Management for TN in the Emergency Room – Presenter Dr. Jeffrey Cohen
Avoid the Emergency Room unless there is no other choice. Take medications as prescribed and do
NOT self medicate. Strongly consider having that procedure so that maybe you won’t have that crisis.
There may be a special medication for a situation.
Have documentation from your doctor that is treating your pain on letterhead what the condition is.
Have the doctor call the ER ahead of time so that he can let them know everything.
Fosphenytion is better-tolerated and best to use. It is a prodrug that is metabolized to phenytoin and
administered parenterally for the treatment of seizures. IV Keppra is for people who are allergic to
Dilantin and is not metabolized in the liver. Sumatripitan is used to treat migraine headaches.
Have a plan. Use eye drops like what the eye doctor uses “tetracaine”. This is white, water, soluble,
crystalline solid used mostly as an anesthetic.
I asked if the medical department looks at the Medical Alert Bracelet or am I just wasting my money?
Yes, and you MUST keep it up to date. You can call or go on-line to keep your doctors, medications,
and person to call, etc. It’s very easy. http://www.medicalert.com/home/Homegradient.aspx or you
can call 1-800-432-5378. Anyone who is on meds, should have a bracelet.
Return to Home Page