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Here's what I have used to help thousands and thousands of Phds (person's with HD)
successfully apply for Social Security Disability and other types of
disability on the first go round.
I've also included several other disability applications for examples, that I've helped others fill out. This will be the first time all of this
information is in place for "one-stop shopping" If you have any
questions please feel free to call or e-mail me!
Click Here To
Download a PDF
How to Know When to Quit
Working and File for SSD, STD and LTD
Honestly answering the questions below will help you to determine if it
is time to quit work and apply for Disability now, or if your problems
are being caused by other mitigating circumstances such as lack of
sleep, (i.e.: because your wife just brought home your new baby); extra
anxiety, (i.e.: because performance appraisals are coming up at work
soon); being fatigued and not feeling well, (i.e.: because of having a
cold or the flu); or any other stressful or tiring events in your life.
By saying and using “uncharacteristic”
below, I am implying that the problems that you are experiencing at work
now, are “uncharacteristic” of your past performance and achievements.
If you are not routinely experiencing any of these additional
“stressors” in your life, and you have still answered the majority of
the questions below “Yes,” then the problems you are experiencing at
work are probably HD-related such as cognitive, emotional and behavioral
• Have you gotten any “uncharacteristic” verbal
warnings from work in the last 6 months to a year?
• Have you gotten any “uncharacteristic” written
warnings from work in the last 6 months to a year?
Has anyone confided in you at work that your job performance isn’t what
it used to be, that you’re just not able to finish as much stuff at work
now as you could before?
Are you finding that it now requires you to “uncharacteristically”
expend twice as much mental energy and concentration to complete your
routine work-related responsibilities than it did before? For Example:
“I just finished the report my boss wanted this afternoon and I am
totally exhausted mentally.”
Are you taking two to three times longer to “uncharacteristically”
complete your routine work-related responsibilities than it was before?
For Example: “I used to be able to finish my production report by
Wednesday of each week but now it’s taking me until Friday for some
Are you finding that you have an extremely “uncharacteristically” harder
time focusing on your work-related responsibilities when you’re under a
deadline or other routine work-related pressure?
you having an “uncharacteristically” harder time routinely remembering
how to do work-related responsibilities, even if you’ve done them for
years and years? For Example: “I have done this job a million times
before, why can’t I remember how to do it this time?”
Are you “uncharacteristically” taking more time to complete your routine
work-related responsibilities because of making silly errors that you
would have never made before?
Do you find yourself “uncharacteristically” forgetting meetings and
other instructions from your boss and fellow employees routinely if you
don’t write them down immediately?
On a routine basis, are you “uncharacteristically” getting into trouble
for being over budget or spending too much money?
Do you “uncharacteristically” feel, on a routine basis now, that
everyone at work is out to get you?
Are you “uncharacteristically” getting into more arguments with your
boss and fellow employees at work, on a regular basis now, and then find
yourself trying to find ways to get even with them or prove them wrong?
On a routine basis, do you sometimes “uncharacteristically” feel that it
is okay to bend the rules regarding wearing safety equipment and
following established safety guidelines and procedures; okay for you to
not accurately report mistake you have made; or okay for you to speak in
a “sexually flirting” way with other female employees?
Do you find that you routinely have an “uncharacteristically” shorter
fuse than before and routinely “blow up” and holler at others when
things don’t go your way, or something unexpected happens?
Do you find yourself routinely getting “uncharacteristically” irritated
at little things fellow employees do, including your boss?
When something happens at work that upsets you do you
“uncharacteristically” find yourself routinely displaying a “search and
destroy” attitude, rather than a “forgive and forget” attitude?
Do you routinely find yourself “uncharacteristically” forgetting where
you’ve saved your spreadsheets, PowerPoint presentations or Word
documents that you worked on recently?
Do you routinely find yourself “uncharacteristically” unable to do as
much at work as you were previously able to?
Do you routinely find yourself “uncharacteristically” thinking you
deserve more money than you’re being paid at work so you have no
problems taking a little extra money from the petty cash drawer
routinely, or have no problems “padding” your expense report on a
routine basis, so you can get the money you really deserve?
Do you routinely find yourself “uncharacteristically” unable to make up
our mind as to which decision to make on a routine basis? You used to be
able to make snap decisions very quickly but now you can’t seem to make
up your mind as you vacillate between what to do?
Do you routinely find yourself “uncharacteristically” unable to keep up
with daily quotas set for you, whether answering phone calls, making
customer contact calls, or fabricating parts?
Do you routinely find yourself “uncharacteristically” getting lost while
driving to or from work, or forgetting where you are?
Do you routinely find yourself “uncharacteristically” unable to listen
to the car radio while on the way to work because it distracts your
ability to focus on driving?
Do you routinely find yourself “uncharacteristically” having lots of
near misses or cutting people off while driving to work?
Have you gotten any “uncharacteristic” warnings or tickets in the last 6
months to a year, from the local police or highway patrol, while driving
to or from work?
Do you routinely find yourself “uncharacteristically” making sexually
leading comments to other female associates or the office staff?
Has any female associate recently told you that what you recently said
to them, or “innocently” did to them, could be considered “sexual
Do you routinely find yourself “uncharacteristically” wanting to take a
nap at work because of being so mentally and physically exhausted or
having to take a little nap as soon as you get home, before you do
Do you routinely find yourself “uncharacteristically” thinking how
sexually attractive other female employees are now, and fantasizing
about having sex with them?
Do you routinely find yourself “uncharacteristically” putting off
talking to your employees, other colleagues, management, or customers
because you’re afraid you won’t be able to answer their questions or
follow their conversations?
Do you routinely find yourself “uncharacteristically” avoiding people in
general at work because you just “feel” like something is wrong with you
but just can’t put your finger on it like before?
Do you routinely find yourself “uncharacteristically” berating or
“beating yourself up” for not remembering your computer password; for
not remembering how to answer customer questions about the insurance you
sell; or for not remembering
statistical formulas and calculations for reports you’ve always done?
Do you routinely find yourself “uncharacteristically” being unable to
read whether-or-not you’ve upset someone at work because of something
you’ve said or done?
14 Changes That Could
Signal Concern In HD and Help You Decide If It’s Time to Quit Working
and File for Disability
Here are “14 Changes That Could Signal Concern in HD” that I wrote
several years ago. These can also be used to identify potential
HD-related problems both at work and at home:
1) Memory Loss that affects job or personal skills. It is normal to
forget an assignment, deadline or a colleague's name, especially when
under stress. However, frequent forgetfulness or confusion at home or in
the workplace over an extended period that is not typical of the person
with HD may signal concern.
2) Difficulty performing familiar tasks. Busy people pause occasionally
to think about what they are doing, or how to finish a project. However,
concern is raised if tasks which used to be completed in two hours start
taking all day, or if getting ready to go somewhere takes an hour
instead of ten minutes.
3) Problems with speech and language. Everyone has trouble finding the
right word sometimes, but a person with HD may forget simple words or
substitute inappropriate words, such as, "place the pie in the toilet,"
instead of saying "in the oven." Speaking may be slow, with pauses
between words and responses.
4) Disorientation to time and place. Anyone may momentarily forget the
day of the week or what is needed from the store. But persons with HD
can easily become distracted and completely lose track of time and
tasks. They may remain disoriented until it is brought to their
attention. They may get lost driving home, to work, or even to a
5) Changes in mood or behavior. Everyone experiences a broad range of
emotions- its part of being human. However, persons with HD may exhibit
rapid mood swings for no apparent reason. These moods may be
uncharacteristic changes from their usual temperament. They may show
reduced or inappropriate emotional responses to any given situation.
6) Poor or decreased judgment. Everyone has gotten upset when they
received a traffic ticket. However, a person with HD who is stopped and
falsely arrested for being drunk may become extremely angry and insult
or even hit the policeman because of poor judgment or lack of
7) Problems with abstract thinking. Balancing a checkbook can be
challenging for anyone, but for someone with HD, recognizing numbers or
performing calculations may be extremely difficult and stressful.
Diminishing concentration, focus and sound decision-making may signal
problems if they continue for no apparent reasons.
8) Misplacing things. We all misplace a wallet or keys from time to
time. However, a person with HD may put items in inappropriate places
and not remember doing so, such as placing a carton of milk in the
cupboard or a wristwatch in the sugar bowl.
9) Changes in personality. Personalities often change with age. A person
with HD may experience uncharacteristic changes in their personality.
For example, someone who was generally easygoing may become angry,
paranoid or fearful and someone who was outgoing may become withdrawn
from social interaction.
10) Loss of initiative. It's normal to tire of housework, business
activities or social obligations. But for most people, this feeling is
brief and enthusiasm and interest return. The person with HD may become
apathetic and become indifferent towards activities which used to bring
them satisfaction and happiness.
11) Depression. Tragedy saddens us all but the person with HD may not
recover- they may show increased irritability or crying and may express
feelings of hopelessness or guilt. They may lose interest in ordinary
activities, such as sex, and may even experience disturbances in eating
and/or sleeping patterns. Severely depressed individuals may even talk
openly of suicide, saying things like, "I'm not needed anymore," or
"Things would be better off without me."
12) Loss of social inhibitions. It is normal to change beliefs or values
as you age. A person with HD may uncharacteristically start cussing,
gambling, lying, cheating, stealing or being sexually promiscuous-
things they would have never done before.
13) Loss of visual-spatial coordination. Anyone might misjudge a turn or
hit a curb. However, a person with HD may lose the coordination or
reflexes to avoid an accident, back out of a driveway, or shift the car.
They may hit their elbows while walking through doorways or bump into a
wall while simply walking down a hallway.
14) Slowed comprehension. Everyone occasionally misses the punch line of
a joke but a person with HD may have poor or slowed comprehension so
they cannot grasp the meaning of a story or conversation. There may also
be slowed interpretations or misinterpretations of facial expressions,
such as approval or disgust, causing inappropriate responses and
NOTE: The changes noted above, subtle to severe, should be brought to
someone’s attention if they begin happening unexplainably or are not
characteristic of your usual behavior or normal abilities. Since some of
these warning signs are so personal, only you or someone close to you
can help determine if they indicate areas for concern or are simply a
result of mitigating circumstances of other stressors. Please understand
that behavior that is considered normal for one person may not be
considered “normal” for someone else.
You should also take advantage of your Therapist, Neurologist, or
Psychiatrist, as they are usually very objective. Your spouse or family
members can also help. In addition, a very close business
associate/partner or employee can also help you to determine if your
current performance is “uncharacteristic” of what you used to be able to
Understanding Potential Barriers and How To Overcome
Must Be Willing To “Come Out Of the Closet” and Be Tested
If your HD has been kept a secret, it is time to break the silence now,
and follow these guidelines if you want to be approved for Social
Security Disability (SSD) on the first submission. Not getting approved
on the first submission could result in waiting an extra ten (10) or
eleven (11) months, from the initial time you filed, to receive your
first SSD payment, instead of in just 4-5 months (unless you proactively
took out a short-term disability (STD) and long-term disability (LTD)
policies at work). The longer you have to wait for your first SSD check
to come in means the longer you are unable to pay the bills, continue to
eat out, and enjoy the quality of living you had before. It could also
mean being required to see a Social Security Doctor, who knows nothing
about HD, to verify that you are disabled because of HD; or possibly
having to hire a costly lawyer to reapply for SSD benefits which will
cost you thousands and thousands of dollars, unnecessarily.
If your loved one is suffering from “unawareness” and cannot tell that
they are symptomatic enough to receive benefits (even after being
repeatedly warned at work), and they do not see a need to file for SSD,
please tell them that they will have more money to spend on their
favorite things (ice cream and cookies, alcohol, cigarettes, movies,
clothes, traveling to Hawaii, etc.) if they file. You can conduct the
SSD interview for them. All you have to do is have them give the Social
Security representative permission for you to do this.
You should make the call to SSD and tell the representative who answers
that your spouse or loved one is unable to conduct this interview with
them because of dementia, not being able to remember very well, or
because they get confused easily and have a hard time understanding what
you ask them because of their Huntington’s Disease. The representative
will then ask to speak with your spouse, loved one, or family member to
verify who they are. For verification, the Social Security
representative will ask the person needing SSD their Social Security
Number, Date of Birth, City and State where they were born, and their
Mother’s maiden name. You should know enough about this person to be
able to also answer general questions about their address, where they
worked, etc., if necessary.
If, during the phone interview you are unable to answer any of the
representative’s questions, just pause a minute and ask whomever you’re
helping for the answer.
Refusal To Cooperate
In severe cases, where the person who needs to file for benefits refuses
to cooperate or is combative, because they are already suffering from
dementia, apathy, or unawareness, and have refused to give permission
for me or their spouse, loved one, or family member to talk to the
Social Security Representative for them, I have covertly “secured” all
of the personal verification information beforehand (mentioned above),
in addition to their address, information about their last job and why
they are unable to work anymore, and pretended to be them on the phone.
If the person happened to be a woman, I would then ask a daughter,
sister, aunt, or female friend to be them on the phone. This way, even
those who refused to cooperate, were still able to receive these
benefits that they desperately needed to improve their current quality
of life. The next hurdle is intercepting the application SSD sends so
you can fill it out and send it back in for the person.
Unable, Physically or Mentally To Complete Forms
Some family members and social workers make the mistake of forgetting
that Phds suffering from Dementia, Apathy, or Unawareness may not see
the need to complete the paperwork and submit it or that they need to be
“jump started” or helped to begin anything new. This means the paperwork
will sit there, not be completed, and not be returned to SSD in a timely
manner, thus forcing them to be denied. I know doing something for Phd
breaks every rule that Social Workers have learned in school, about not
doing the work for the person you are helping or they won’t appreciate
it or won’t take ownership of it themselves. However, I can promise you
that this methodology does not work well for those suffering from HD. I
prefer to personally help them or complete their application myself and
then submitting it right away.
A Humorous Example: I was helping Don get onto SSD and also the State of
Arizona health care plan called AHCCCS. He did not have a birth
certificate and you need an original to file for both. I asked him
general questions on a visit to glean as much information as I could
from him like where he was born, his Mother’s maiden name and his
Father’s name. I also snooped through some of his bills, other paperwork
lying around and his wallet to find out his Driver’s License Number,
Date of Birth, and Social Security Number. I then did two things, I
called on his behalf “incognito” and asked them to send the Social
Security Disability application paperwork and also went to the internet
and Googled where to apply for his birth certificates from the state
where he was born. After inputting all of the information that was
required for him to receive his birth certificate, I then had it sent
overnight via Federal Express.
The next day I was so pleased that everything had gone so smoothly until
I called Don to enquire if he had received a package from Federal
Express for me that day. He said “No” that he had heard a knock on the
door that morning but that he didn’t ever answer the door before 10 am!
I then got in my car, rushed over to his apartment, and tried
unsuccessfully to convince him to answer the door the next morning to
receive my very important package (that contained his original birth
certificate). I took the attempted delivery notice off his door in order
to verify what time they would attempt redelivery the next day, and then
returned to his apartment and waited for two hours until they
redelivered his package.
I reveled in my success for about a week until I called him again to
enquire if he had received the SSD application via mail. He said that he
hadn’t but I got suspicious, went there, and ended up fishing it out of
the garbage can! After conducting the phone interview on his behalf
“incognito” and also completing his SSD paperwork for him, the next
challenge was to get him to a doctor to document that he couldn’t work
anymore. More on this topic later- getting him to go to the doctor cost
me two of my best dinette chairs but it worked so I really didn’t care!
I know some of you are saying about now that I shouldn’t have posed as
Don, shouldn’t have snooped around his apartment, etc. etc. but I
honestly feel that sometimes, especially when sincerely trying to help
those suffering from HD’s Dementia and other symptoms, that the end does
justify the means.
Wrongfully Believe SSD Is “Freebie” Program
Even though many have paid into the Social Security system all their
lives, some Phds still feel reticent about receiving them because they
incorrectly believe they are “free” and that goes against their
religious or political beliefs. Please explain to them that SSD should
be looked at like a savings account, long-term disability policy or life
insurance policy that you make deposits into and pay premiums for while
working and able to, and then when you are no longer able to work,
because of disability, you can then legitimately take money out of your
savings plan or receive the benefits that you have paid for all of your
Please explain to them that they will not be getting their SSD benefits
for “free” or “nothing” because FICA has been deducted from each pay
check the entire twenty, thirty or forty years they’ve been working.
(“Under the Federal Insurance Contributions Act 12.4% of earned income
up to an annual limit must be paid into Social Security, and an
additional 2.9% must be paid into Medicare. If you're a wage or salaried
employee, you pay only half the FICA bill (6.2% for Social Security plus
1.45% for Medicare), and the tax is automatically withheld. Your
employer contributes the other half… If you're self-employed, however,
you're expected to cough up both the employee and the employer share of
FICA. You are, however, permitted to deduct half of this self-employment
tax as a business expense.”
Sincerely Believe That They Are Still Capable of Working and Blame
Problems On Everyone Else
Some see no need to file for SSD because they feel they are still
capable of working, mostly because of unawareness, even though they’ve
had unsuccessful results for several months to several years or
disastrous results with getting hired and then terminated or laid off by
four or five businesses. I explain to these Person’s with HD (Phds) that
wouldn’t it be lots easier for them to just quit looking for a job, not
work, and still get a paycheck?
Almost everyone in this situation who I have helped have seen the
“light” and then agreed to file. I also assured them that they could
still do odd jobs on the side for cash but would have this consistent
check/deposit each month to count on. This way they could purchase a lot
more and have a much higher quality of living!
1. Complete and return everything Social Security sends you as quickly
as possible. Any delays will slow up your approval process. Their
instructions will say NOT to enclose any other information with their
forms but do it anyway (see below for what to enclose) because you must
educate them about HD.
2. It will then take several months for them to process your application
and request information from every doctor you have seen, but don't worry
because once approved, they will make your initial disability check
retroactive back to your original date of your initial application.
3. Once you are approved, and if you are married and have children still
living at home, you can immediately have Social Security Disability
(SSD) take applications for your spouse and every child, under the age
of 18, as they will also qualify for a small monthly disability check as
part of your disability too.
4. On March 1st 2010, HD was been added to the “Compassionate
Allowances” condition list! This should expedite the application process
for Social Security Disability but unfortunately, every person I've
talked to since then, when helping others file for SSD, hasn't known
about it! However, be aware that HD is not listed under its own name,
but is included under Mixed Dementias and this is a problem since most
of the existing Guides or Literature about HD have little to nothing
about Dementia in them yet. I highly recommend that you ask your
Neurologist or Psychiatrist to put "dementia" as part of why you are
disabled and cannot work.
HD Added to New Compassionate Allowance Conditions, Under Mixed
Dementia (Effective March 1, 2010)
The following is taken from the SSA website: "Social Security has an
obligation to provide benefits quickly to applicants whose medical
conditions are so serious that their conditions obviously meet
Compassionate allowances are a way of quickly identifying diseases and
other medical conditions that invariably qualify under the Listing of
Impairments based on minimal objective medical information.
Compassionate allowances allow Social Security to quickly target the
most obviously disabled individuals for allowances based on objective
medical information that we can obtain quickly."
New Compassionate Allowance Conditions (effective March 1, 2010)
1 Alstrom Syndrome
2 Amegakaryocytic Thrombocytopenia
3 Ataxia Spinocerebellar
4 Ataxia Telangiectasia
5 Batten Disease
6 Bilateral Retinoblastoma
7 Cri du Chat Syndrome
8 Degos Disease
9 Early-Onset Alzheimer’s Disease
10 Edwards Syndrome
11 Fibrodysplasia Ossificans Progressiva
12 Fukuyama Congenital Muscular Dystrophy
13 Glutaric Acidemia Type II
14 Hemophagocytic Lymphohistiocytosis (HLH), Familial Type
15 Hurler Syndrome, Type IH
16 Hunter Syndrome, Type II
17 Idiopathic Pulmonary Fibrosis
18 Junctional Epidermolysis Bullosa, Lethal Type
19 Late Infantile Neuronal Ceroid Lipofuscinoses
20 Leigh’s Disease
21 Maple Syrup Urine Disease
22 Merosin Deficient Congenital Muscular Dystrophy
23 Mixed Dementia
24 Mucosal Malignant Melanoma
25 Neonatal Adrenoleukodystrophy
26 Neuronal Ceroid Lipofuscinoses, Infantile Type
27 Niemann-Pick Type C
28 Patau Syndrome
29 Primary Progressive Aphasia
30 Progressive Multifocal Leukoencephalopathy
31 Sanfilippo Syndrome
32 Subacute Sclerosis Panencephalitis
33 Tay Sachs Disease
34 Thanatophoric Dysplasia, Type 1
35 Ullrich Congenital Muscular Dystrophy
36 Walker Warburg Syndrome
37 Wolman Disease
38 Zellweger Syndrome
(CAL) DDS Instructions
The CAL initiative is designed
to quickly identify diseases and other medical conditions that
invariably qualify under the Listing of Impairments based on minimal,
but sufficient, objective medical information. If the condition
does not meet these strict criteria, it will not be designated as a CAL
All CAL-identified conditions are entered into the Predictive Model (PM)
and are selected for CAL processing based solely on the claimant’s
allegations listed on the SSA-3368 (Disability Report—Adult) or
Like Quick Disability Determinations (QDD),
CAL cases will receive expedited
processing within the context of the existing disability determination
CAL cases are similar to Terminal Illness (TERI) claims, although
not all CAL cases involve terminal illness. For example, a person with a
spinal cord injury could qualify as a compassionate allowance – even if
he or she is expected to live for many years.
POMS Section: DI 23022.015
Social Security Online
Effective Dates: 10/24/2008 - Present
ALTERNATE NAMES Dementia due to multiple etiologies; Vascular dementia
Alzheimer’s disease (VaD); Parkinson’s dementia; Diffuse Lewy-Body
dementia; Frontotemporal dementia (Pick’s disease);
Prion dementia; Progressive Supranuclear Palsy (PSP)
Mixed Dementias (DI
POMS Section: DI 23022.455
Effective Dates: 02/26/2010 - Present
General Guidelines (Continued)
5. Some Person’s with HD (Phds) quit working and stay home for several
years and then decide to file for SSD. If you did this, DO NOT put the
original day you quit working as SSD will not approve your application.
Do not get “greedy” as SSD WILL NOT make your first check retroactive to
4 or 5 years ago, even if it was the correct time you quit working. You
should pick a date from several months ago which is well after you have
started establishing a paper trail documenting your HD-related “softer”
symptoms and physical symptoms. You can simply state that you were
having problems 4 or 5 years ago so you quit work then to see if that
would help your symptoms but now you and your doctor have both decided
that you are too symptomatic to ever return back to work again so you
are filing for SSD claim now.
6. Using the same example in #5 above, it is also very important to note
that there is a 10 year time limit from when you quit working to when
you can file for Social Security Disability. If you wait over 10 years
you will not be allowed to file and will lose all of the money you paid
in while working for this important benefit!
7. You must also be younger than 65 years of age to qualify for SSD.
8. For those who have not tested or who have tested anonymously,
unfortunately, you will have to come “out of the closet” and get tested
so you can enclose your genetic test results with your initial
application. You must also make sure your doctor also has a copy of your
genetic test results. Part of coming “out of the closet” of anonymity
also means that you must begin making a paper trail (meaning you will
need to see your neurologist, psychologist, psychiatrist, therapist,
Neuro-psychologist), preferably before you file for SSD so you will have
a paper trail documenting your HD-affected behaviors, feelings,
emotions, depression, any suicidal feelings, fears about your children
being genetically discriminated against, anger at not being to work of
drive any more, and physical problems you have had in the recent past
and are currently still experiencing.
Their names and addresses are the ones you will sign releases for
authorizing SSD to contact in order to get your official medical
information from. SSD will not accept any medical information that you
send in pertaining to your personal medical records- it must receive
this personal information from your current medical doctors or
9. Ideally, you will be working in conjunction with ALL of your medical
professionals to determine when to go out on disability so please make
them all aware that you are intending to do this and ask them if they
will support your decision. It would also be appropriate to ask them if
they have, or would put statements in your records that you are unable
to hold a job because of the problems you’re having- and then they
should be very specific in listing those problems.
10. If you are suffering primarily from the “softer” symptoms of HD- the
behavioral, emotional and cognitive ones, I recommend that you see a
Neuropsychologist first to take a Neuropsychological exam. The
Neuropsychologist will interview you (where you can tell him, for
example, how hard it is for you not to work, how depressed you’ve
become, how you miss associating with your fellow workers, how hard it
is on your spouse to be the only one earning a living now, how other
family dynamics have changed, how hard it is on you to know that your
children now have a 50/50 chance of inheriting this disease too, that
you are having to take 2 to 3 naps each day to have strength or energy
to do other things, etc.). In addition to the interview you will also be
given a lengthy 5-6 hour Neuropsychological exam.
11. If you are scheduled to see the SSD doctor after you submitted your
initial paperwork here are a few suggestions for both the person with HD
(Phd) and their spouse/caregiver: For the Phd – You know that during
each month you will have “good” days and “bad” days, but your overall
condition is one where you realistically can’t hold a full time job now.
Because of this I encourage you not to prepare for any of these meetings
with either the SSD doctor (or the Neuropsychologist). By this I mean
don’t practice counting backwards from 100 by 7s, before seeing the
doctor, but rather, simply respond naturally, without any prior
For the spouse/caregiver – Allow your Phd to dress as they do at home
(and try not to be embarrassed) as this is more representative of how
they actually are on a daily basis. Don’t help with their grooming or
dressing on the day of their appointment and don’t “intervene,” “speak
for,” or try to “calm” them during their interview as you normally would
if your loved one get confused or emotional as this will allow the SSD
doctor or Neuro-psychologist to see them how they really are and how
they act and behave under different circumstances. Remembering not to do
this you will allow the neurologist or examiner 1) to see the Phd as
they really are on an everyday basis; 2) to get to hear their own
responses, and 3) to watch them function using their own abilities, not
12. If you are experiencing primarily the “softer” symptoms of HD, you
should also begin seeing a psychiatrist, psychologist or a therapist.
The psychiatrist will be the one to prescribe you medicine to alleviate
your “softer” symptoms and the psychologist or therapist will keep you
appraised if the medications are working. These medical professionals
will begin establishing a paper trail documenting your symptoms and
feelings (similar to those listed above for the neuro-psychologist) that
will later help you qualify for SSD. These professionals will also be
the ones to recommend a Neuro-psychologist if you need to take a
13. Being able to tell your loved one’s doctors or therapists (and
having them record this) that they have not been able to drive now for 6
months, 2 years or 4 years, because of repeated accidents, near misses,
inability to multi-task while driving, poor visual-spatial reaction
time, etc. will drastically make them look more “disabled” than if they
are still driving when you submit your SSD application. Are they
disabled or not? See what I mean? Don’t inadvertently give the
evaluators at SSD any doubt about whether-or-not your loved one is truly
14. CAUTION: If you don’t have a paper trail containing sufficient notes
from doctors and other medical specialists that they think you’re
disabled and SSD cannot make a decision from the medical records you’ve
released to them, they will set an appointment for you to see one of
their doctors. Believe me, you DO NOT want this to happen, however, if
it does this is what I recommend: 1) ask if you can speak for your loved
one because they have dementia (and are having trouble understanding
questions and responding to them correctly) because of HD. You must also
remember back to when your loved one was having some of their worst days
and tell the doctor about these times. You can say things like: “Because
of dementia my spouse can only remember to take his/her medications;
bath, etc. when I prompt them.” or “They never remember to turn of the
burners on the stove when finished cooking.” or “They can’t remember not
to put metal containers in the microwave so you can’t allow them to cook
When getting ready for this meeting please follow the same guidelines as
discussed under the “For the spouse/caregiver” instructions above. If
you are not approved on the first submission it will probably take
several years to appeal your case, during which time you will have no
Social Security Disability check coming in to defray costs and in fact,
you will probably end up paying a lawyer to help you. Believe me, this
will be more frustration than you want to deal with.
15. Some who are at-risk for HD may work for many years and then quit
working for a number of years before applying for Social Security
Disability. Here’s what one person’s “Your Social Security Statement”
said when denying her SSD. She had worked 30 full years, from 1970 until
2000 and then got tested 6 years later for HD in 2006. She also filed
for SSD but was denied it. Here’s why: “Disability- To get benefits if
you become disabled right now, you need 35 credits of work, and 20 of
these credits had to be earned in the last 10 years. Your record shows
you do not have enough credits in the right time period.” Incredible
that after working 30 years that she failed to qualify because of the
stipulation that 20 credits must be earned in the last 10 years. Don’t
fall into this same trap!
16. The same “Your Social Security Statement” also defines credits as
follows: “To qualify for benefits, you earn ‘credits’ through your work
– up to four each year. This year, for example, you earn one credit for
each $970 of wages or self-employment income. When you’ve earned $3880,
you’ve earned you four credits for the year…”
Feel free to e-mail Phillip Hardt at firstname.lastname@example.org or call him at
602-309-3118 to ask about specific issues or concerns you may have, and
to get additional, more personal recommendations.
Establishing Your Paper Trail
DNA Analysis Report
Make sure that your Primary Care Physician (PCP), Neurologist and
Psychiatrist all have copies of your DNA analysis report showing that
you are carrying the HD gene and are predisposed to being clinically
diagnosed with HD!
Neurologist and/or Psychiatrist Visits
You should have already proactively been seen by a Neurologist or
Psychiatrist or already have a medical file with well established paper
trail, including a copy of your DNA analysis report. Once you have
decided that you are experiencing too many problems and it is just too
hard emotionally and physically on you to continue working, make an
appointment immediately with your current Neurologist or Psychiatrist.
Tell them you are no longer able to work and ask them to add a note to
your file stating that you are no longer able to work because of
Dementia and Huntington's Disease. Make sure they also have a copy of
your positive genetic test report in your medical file. Most
Neurologists and Psychiatrists are scheduling months in the future so
you must tell them that you just quit your job and need to see them
right away on an emergency basis. You can also ask them to be put on a
cancellation list. When someone cancels because of being sick, you may
get short notice to go in and take their appointment time and date.
As I mentioned in #12 above, if you are
experiencing primarily the “softer” symptoms of HD, you should also
begin seeing a psychiatrist, psychologist or a therapist. The
psychiatrist will be the one to prescribe you medicine to alleviate your
“softer” symptoms and the psychologist or therapist will keep you
appraised if the medications are working. These medical professionals
will begin establishing a paper trail documenting your symptoms and
feelings (similar to those listed above for the Neuropsychologist) that
will later help you qualify for SSD. These professionals will also be
the ones to recommend a Neuropsychologist if you need to take a
If you are suffering primarily from the neuropsychiatric sequelae of
HD’s “softer” symptoms, the Emotional, Cognitive and Behavioral ones,
you still look okay enough physically, for anyone to believe that you
cannot work because of being disabled.
Because of this, you will need proof,
through an objective exam, to prove that you are no longer able to work.
This is exactly what a Neuropsychological Exam does- it documents how
much HD is adversely affecting you work performance, punctuality, goal
achievement, budget, memory, behavior, and actions and making them
“uncharacteristic” from before you started symptoms. It will also
estimate an approximate time when your mental, cognitive and behavioral
Initially, you, and your spouse can answer
these questions by using the measuring stick called UNCHARACTERISTIC! Is
the questionable behavior or actions of your loved one
“uncharacteristic” of their prior work experience, expertise and
education? By using uncharacteristic as the “measuring stick” to judge
whether-or not current behavior or actions were different than prior
behavior and actions is a great starting point.
Benefits of Testing
“The role of neuropsychology in dementia is not only helpful in
verifying initial diagnoses, but it also helps to measure the rate of
progression, provide indications on how deficits are changing over
successive evaluations, and measure the efficacy of intervention
therapies over repeated evaluations. It is helpful in research,
providing sensitive tools for early detection and discrimination of
deficits, and it helps provide powerful tools for clinical trials.
With respect to patient care, it can also help identify cognitive
strengths and weaknesses and how deficits impact the activities of daily
living. This can help us suggest to the family and the patient what he
or she is still good at, how to remain productive, and what he or she
should and should not try to do. For example, should the patient try to
do finances, does he or she need a little help, or should that task be
taken over by someone else? Neuropsychological testing also helps
estimate the need for and extent of future care.
Neuropsychological testing, however, should not be used as a lone
diagnostic tool; it is always most useful in conjunction with a
multidisciplinary approach, including psychiatry, psychology, radiology,
social work, or others that I have not mentioned.” Penne Sims,
Ph.D., “Neuropsychology of Mild Cognitive Impairment, Alzheimer's
Disease, Dementia with Lewy Bodies, and Frontotemporal Dementia,”
When I instructed one man, who was
applying for STD/LTD and SSD because he was unable to work any longer,
to immediately ask his Neurologist at Columbia University for a referral
to get a Neuropsychological Exam, the Neurologist refused and stated
that “You don’t need one yet- wait until you get rejected and then have
one done!” This is obviously too little too late and luckily the
Neurologist did finally give this Phd a referral. If you wait until
you’re rejected before you request a referral to have a Neurological
Exam done then you have already gone 4-5 months without pay. Now, will
have to wait an additional 6-8 weeks to get an appointment, and then
another 2-3 weeks for the results- and all without pay! See how it’s
much smarter to just get one done to begin with, especially when you’re
primarily struggling with the “softer” symptoms of HD, the emotional,
behavioral and cognitive ones.
For a further explanation, please read: Phillip J. Hardt’s, “Using the
Neuropsychological Exam and Other Tools to Help Those Struggling With
the “Softer” Symptoms of Huntington’s Disease,” and Penne Sims, Ph.D.,
“Neuropsychology of Mild Cognitive Impairment, Alzheimer's Disease,
Dementia with Lewy Bodies, and Frontotemporal Dementia,” at
Primary Care Physician Visit
You should also have already proactively been seen by a Primary Care
Physician (PCP) or General Practitioner (GP) and already have a medical
file and well established with initial paperwork, including a copy of
your DNA analysis report. Once you have decided that you are
experiencing too many problems and it is just too hard emotionally and
physically on you to continue working, make an appointment immediately
with your current PCP or GP. Tell them you are no longer able to work
and ask them to add a note to your file stating that you are no longer
able to work because of Dementia and Huntington's Disease. Make sure
they also have a copy of your positive genetic test report in your
medical file. You can usually get into to see your PCP or GP within a
week. If there is a problem with scheduling, tell them that you just
quit your job and need to see them right away on an emergency basis. You
can also ask them to be put on a cancellation list. When someone cancels
because of being sick, you may get short notice to go in and take their
appointment time and date.
Social Security Disability (SSD) Is Not Enough for You
or Your Family. It Is Imperative that It Be Supplemented with Short- and
Long-Term Disability To Attain the Highest Quality of Living Possible
For You and Your Family
I consider Social Security Disability (SSD) plan “B” because, unless you
have a very high paying job, you will not take home much money from just
SSD. I believe everyone should proactively consider taking out
Short-Term Disability and Long-Term Disability while still working. The
premiums can be expensive so please consider getting a job with an
employer who offers them as a benefit and then the company will usually
pay part of your premiums. If you already work for a company who offers
STD and LTD insurance, please sign up for it during “open enrollment” so
as to not raise any red flags that you may have a problem.
If you already have a low paying job or
you haven’t been in the workforce for a long time to build up your take
home pay, you are only going to get about $700 per month to live on. If
you are just going to rely on it to live, it is going to be extremely
hard. What if you could continue making exactly what you were while
working full time the whole time you’re disabled (until you turn 65).
Imagine how much easier it would, and how much higher quality of living
you and your family would be able to have if you did this? You can! It’s
insurance you can purchase for a very reasonable premium through your
employer called Short-Term Disability (STD) and Long-Term Disability
(LTD). In fact, many employers even supplement or pay part of these
premiums for you. If you do not have this coverage now, please be
proactive and take it out during the next open benefits enrollment
period, (usually September through November of each year), that your
employer has. Do not enquire about it during the rest so you don’t raise
any “red flags” of suspicion. I’m going to share my own personal example
with you so you can see what a huge difference this makes:
I was the sole breadwinner for my little family, which consisted of my 8
children and a wife! That’s 10 total if you’re counting!
My monthly “net” salary, after taxes and other deductions
were withheld, was:
After being able to no longer work and having to go out
on disability the amount I get from Social Security Disability
(I get a little higher amount now because of periodic Cost Of Living
Allowance Increases (COLA))
Can you imagine going from living on $3,000 per month to only $1499?
That’s a 50% reduction!
STD also paid me $3,000 per month for the 5 months I waited for my SSD
to begin ($15,000). Because I had proactively taken out STD and LTD
while working, I was able to continue paying the bills, buying
groceries, and doing exactly was I was before I had to go out on
If I had not had STD I would not have
received anything for that 5 months and life would have been very tough
at the Hardt house. You receive the full amount from STD (that you
initially qualified for- in my instance $3,000 per month) until you
qualify for LTD.
Once you do this, you then get the full
amount from LTD (that you initially qualified for- in my instance $3,000
per month) until you qualify from SSD.
NOTE: Once you qualify for SSD, you need to let LTD know immediately as
they will begin deducting the monthly amount you getting from SSD from
their check. If you fail to notify them immediately, you WILL have to
pay back the extra money they paid you when you were also getting a SSD
The beauty is, you continue to get the same amount (that you initially
qualified for- in my instance $3,000 per month), it’s just part is now
coming from LTD and part is coming from SSD!
After being able to no longer work and having to go out on
disability the amount I get from Long Term Disability was:
*My total doesn’t exactly add up to $3,000 per month and here’s why.
After my wife divorced me, the 5 adopted children stayed with her. She
received an additional $550
per month for all of them, from SSD, under
my disability benefit, until each of them turned 18. If you have
underage children still living at home when you have to go out onto
disability they get this extra amount. If you don’t have any underage
children still living at home when you go out on disability SSD will
unfortunately not give you this extra amount.
This benefit is also calculated as if you were still married and still
living at home also receiving the “benefit” of it. Since I was divorced
LTD subtracted this amount from my benefit check. Because of this I
claimed that it was part of my child support payments and the court
accepted it. Had I still been married, instead of getting a $952 monthly
check from LTD I would have gotten $1502 monthly check from them ($952 +
$550)! $1,499 monthly SSD benefit + $1,502 monthly LTD benefit = $3,001-
exactly what I was taking home before!
If you do not have STD and LTD and have to quit work because of HD
symptoms and you immediately file for SSD, you will go without your
regular monthly income for 4-6 months.
STD/LTD and SSD
In comparison, if you have STD and LTD and have to quit work because of
HD symptoms, once you file for disability under STD, it will continue
paying you a monthly check at approximately the 55% of your gross, which
will be almost exactly what you were taking home while working
Can you see how having both STD and LTD will help you and your family
More About Short-Term Disability (STD) and Long-Term Disability (LTD)
Once you decide that you are experiencing so many problems at work that
it is too hard and too stressful for you to continue to work. Sometimes
your situation at work is very precarious because you feel like you
could be fired or demoted any moment because of all of the HD-related
problems and symptoms you are experiencing.
You must decide to go out on STD and LTD before you get fired because
once you are fired, you lose both of these benefits. If you boss or
Human Relations (HR) calls you in to fire you, you MUST tell them right
then that you are going out on STD and LTD and tell them that you do not
accept being fired. Tell them you will contact them later with further
If they call you in and tell you that they are demoting you or
transferring you to lesser responsibilities because of your problems,
you MUST tell you are going out on STD and LTD because if they demote
you to a lower pay rate and then you later go out on STD and LTD, they
will only pay you 55% of the lower pay rate which will make it
impossible to live on. You must go onto STD and LTD while at your
current pay rate as this is what you and your family is living on.
Taking home anything less will make it extremely hard to make ends meet.
Once management (your boss or HR) has initiated one of these scenarios,
and you have told them that instead, you are going out on STD and LTD,
you must immediately call the toll free number for STD and LTD and tell
them that you are unable to work anymore and want to start disability
the same day you’re calling. If your employer initially won’t agree to
letting you go out on STD and LTD instead of being fired or demoted,
explain to them that this is a win-win solution. You get to go out on
STD and LTD because of your inability to work and your employer can hire
someone to take your place as he doesn’t have to carry you any longer on
his payroll as an active employee.
If your employer still refuses to assist
you, just mention that you have no other option than to contact an
advocacy expert and legal assistance to file a claim against him and the
company as being in violation of the American’s With Disabilities Act
Fortunately, most employers I have helped
Phds talk to, have quickly seen the benefits of this win-win situation
of allowing you go out on STD/LTD so they can hire a new worker. Realize
that it your overall work performance has gotten to the point that your
company feels it has to take action against you, that your company being
able to get you off their books (payroll) will probably be a relief to
them, especially when they know that you are willing to go out onto STD
and LTD and will be taken of financially.
Once you have used up all of your accrued vacation, sick day, and
holiday pay hours, your employer should automatically make that time the
start date for your STD. If they don’t automatically put you out on STD
you may have to call them to remind them to start it.
IMPORTANT: You should try to stick with the same employer too as once
you reach tenure (10 years of service) most plans allow you to also
continue your current medical, dental, vision, mental health plans as
when you were a full-time employee. This will help you your family to
live a much higher quality of life. If you only have SSD you will not
qualify for any medical coverage (Medicare) until 2 years after being
STD usually pays you for the first six (6) months after you have to quit
working. During this initial six (6) months they will have you complete
disability paperwork and will make appointments for you to see their own
STD doctors to verify that you have Huntington’s Disease. You must go to
these doctor’s appointments. Your spouse or a close family member should
attend with you to add symptoms and problems you are having that you may
omit and because you have problems remembering and get confused when
having to answer questions.
They will have you sign a release to receive copies of all of your
medical records. You should not have any medical records detailing that
you have spoken to your PCP, Neurologist or Psychiatrist about
Huntington’s Disease. When you go into your appointment your spouse or
close family member should go with you to add symptoms and problems you
are having that you may omit and because you have problems remembering
and get confused when having to answer questions. You should tell the
STD doctor(s) that you don’t know what is happening to you but someone
mentioned that there might be Huntington’s Disease in your family. If
you have gotten tested anonymously you will then need to be tested again
“in the open” so that the result of your DNA test becomes part of your
STD will continue paying your salary for six (6) months which is a
little more than it will take to get approved for SSD, if you follow my
guidelines implicitly, and if you call SSD right away, after contacting
Once the STD doctors have approved you for disability you will then
begin receiving the same amount from LTD. Once on LTD you may be
required to have your Neurologist complete an annual “continuation of
benefits” exam for you. I am putting the questions, yours may be
similar, that you and your Neurologist will have to complete each time.
WARNING: Once you start receiving SSD you need to let STD/LTD
immediately know how much you are getting and how much your children and
wife are getting too as they will deduct the monthly amount you will be
receiving from SSD from your LTD check. If you fail to notify LTD how
much SSD you are receiving monthly, they will begin deducting this
overpayment and this could result in you NOT receiving anything for
Although SSD has a work program and you could conceivably earn up to a
certain amount without jeopardizing your SSD, you should remember that
you are applying for disability and this would sent contradicting
signals to everyone. In addition, any legal” income you make will be
reported to LTD and they will deduct whatever you have earned. The
purpose of STD and LTD is to guarantee you the same amount of money
while on disability that you were making while working full-time, not to
give you more money than you were originally making.
You will still continue taking home the exact same amount, it’s just
part will be coming from SSD and part will be coming from LTD. (Please
see my example in Figure 1 above).
General Questions for your Human
Resource (HR) Department Regarding Your STD and LTD:
1) How long will my STD last before it converts to LTD? (Generally, STD
lasts about 6 months while they send you to their doctors and gather
pertinent medical information about you and HD from all of your existing
doctors to verify you cannot work anymore.)
2) Will my STD wages remain level or will
they decrease in 3-4 months?
(Generally, STD income will decrease after 4-5 months to encourage you
to quickly comply with their requests to see their doctors.)
3) If you have any accrued sick or
vacation time will they automatically start you on STD when these are
used up or do you have to call in yourself to start the process?
4) What is the percentage of your current
wages that LTD will pay you?
(Generally, this amount is 60%. Don't get scared. There is usually no
taxes withheld from your LTD checks so the amount you actually take home
will be almost exactly as much as what you were previously taking
5) Were my STD/LTD premiums paid pre-tax
or post-tax? If they were post-tax then you will be liable to pay taxes
on what you receive but most policies are pre-tax so there will be no
taxes on your LTD checks.
FILING FOR DISABILITY
Instructions If You Have STD and LTD:
Contacting Short and Long-Term Disability and Social Security
Disability, Using the Compassionate Allowance (CAL) Initiative for
Faster Processing for SSD, to Start Your Disability Claims for Both
Here are the steps to take when you have proactively signed up for Short
and Long-Term Disability (STD and LTD) and also Social Security
1. Once you have told your employer that you can no longer work you need
to do the following:
a. Call your Short-Term Disability
insurance company and notify them that you
are unable to work anymore.
b. Call your Neurologist and/or Primary
Care Physician (PCP) and make an
appointment to see them immediately. Tell them you have quit work
it was too hard to go in each day.
c. Ask whoever can see you quicker, either
your Neurologist or your PCP, to
complete and sign a Work Release form for you stating that you are no
to work and that you will be undergoing additional testing to determine
the matter with you. You need to immediately give this to both your HR
department at work and also to STD when they contact you back to make
appointments for you to see their doctors.
d. Have your Neurologist order the DNA
test for Huntington’s Disease and also
to refer you to a Neuropsychologist so you can take a Neuropsychological
Exam, especially if you are primarily experiencing the “softer” symptoms
HD, the emotional, behavior and cognitive ones.
e. After you have talked with your
Neurologist you should ask him to put a note
in your medical record that you are unable to work any longer because of
(The letter at the very end of my answers to SSD’s disability questions,
Dubinsky from KUMC, is an resource to ask your Neurologist or
put into your medical file.)
f. If you are also seeing a therapist, be
sure to contact them and tell them the
Note: When you call your Neurologist
and/or PCP to make your emergency appointment they may schedule you two
to three months in the future. Calendar this date and tell them this is
an emergency because you’re no longer able to work and have had to quit
your full-time job to file for Short-Term Disability (STD). Simply ask
them to put you on the doctor’s cancellation list so you will be called
early if anyone has to cancel. You should then hopefully get a call
within a month. Be aware that the cancellation call will probably be in
the morning for the same day appointment or in the afternoon for an
appointment the next morning. You must take these cancellations even
though they are a little inconvenient. The sooner you see these doctors,
the sooner your STD will be approved!
After filing for STD, read over all of instructions for how to file
successfully for Social Security Disability (SSD). About 1 week after
filing, follow the instructions in section 12 above and call Social
Security to file for SSD. Please follow all of my guidelines to be
approved the first time.
Social Security Disability (SSD) will also send you medical records
releases to get copies of your medical records for disability
eligibility determination. These are different than the ones you have
already signed for Short-Term Disability (STD), that they will also use
for disability eligibility determination. All forms you receive have got
to be completed and returned to the appropriate source as soon as
possible. Everyone knows that with HD you will have good days and bad
days but please remember, when completing any forms, you need to answer
the questions while remembering the worst days of your functioning, not
your best. You should also follow this same guideline when meeting with
any doctors too.
When STD sends you their disability application for you to complete, you
must complete part of the application and then take the rest in to the
doctor to complete and return to STD. Be sure to use the answers for SSD
questions when you fill it out! Remember, you need to be as negative as
possible, answering how things are on your worst days of functioning,
not your best.
A representative from STD will contact you to schedule an appointment
for you with one of their own Neurologists or Psychiatrists. This is one
of the appointments you should not sleep the night before or dress up
for. The sloppier you dress and sloppier your hair and everything else
are the better!
When asked questions, you also need to remember your worst days of
functioning when you answer them, not your best. Take your time in
answering- pause a long time between every answer. Take the same
information to your doctor’s appointment as I recommend in section 12
for SSD. We have to educate everyone along the way about HD. Your spouse
or close family member should drive you to your appointment as you
should not be driving if you are disabled enough to be on STD and LTD.
This doesn’t mean that you still don’t drive down to the corner grocery
every now and then to get snacks but do not tell their doctors this.
Your spouse or close family member should also ask if they can go in
with you to the interview because of your "dementia," "confusion" and
"memory loss" problems as they may need to answer some of the questions
you get confused on and "redirect" some of your answers in case you are
having a bad day and cannot remember correctly.
The day of your Neuropsychological exam you follow what I mentioned
above in the preceding paragraph. You should also e-mail me or call me
the week before so I can talk with you. This is imperative!
If you have not seen your primary care doctor yet, make an appointment
with them and ask them to also put a note in your medical records that
you are unable to work any more because of HD. Make sure your PCP also
has a copy of your positive genetic DNA test in your file. What we are
doing in each of these cases is establishing a “paper” trail that I
explained the necessity of in my SSD instructions.
If you follow my instructions on how to file for STD and SSD you will
NOT have the additional stress of having to see an additional
I strongly recommend that someone who doesn’t have HD be asked to help
you through this entire process. They should also be the one who
completes your applications for you because of your dementia, confusion
and loss of ability to understand and think clearly.
Don’t worry, you’ll do fine and remember, if you do have any questions
or need additional help I will be there to assist you! I know that you
are going to feel so much better after deciding to quit work and after
completing your STD/LTD and SSD applications that you will wonder why
you hesitated so long before doing it! Once you finally decide to quit
you will find that many of the symptoms you have been experiencing will
diminish too. Enjoy this time with your spouse, family and loved ones!
Please ask if you have ANY additional questions, either by calling me or
Instructions If You
Don’t Have STD and LTD:
Contacting Social Security Disability, Using the
Compassionate Allowance (CAL) Initiative for Faster Processing, to Start
Your Disability Claim
1. Call Social Security's national number: 1-800-772-1213 and request a
phone interview with your local Social Security office. Tell them that
you are filing a disability claim under the Compassionate Allowance
(CAL) initiative. (If they haven't heard of it, or don't know what
you're talking about, read them the information contained on my
Compassionate Allowance page:
Compassionate Allowance Conditions
They will set up a date and time when
someone from the local Social Security office will contact you for your
interview. (The reason why I specify "phone interview" is because some
of those with HD look okay physically and may not make a very good
impression, as far as needing disability, if they go in person.) If they
ask why you're requesting a phone interview tell them you can't drive
anymore because of your cognitive symptoms. In my opinion, if you are
still driving then you aren't disabled enough to apply.
2. The person taking your phone
application will mail you an application packet, medical
release forms, and a confirmation letter of the date and time for your
3. You need to have your spouse or another
family member or friend who knows you well there for the telephone
interview. You should ask the SSD representative if your spouse, family
member or friend, can do the interview for you because you get confused
because of your Huntington's Disease and may forget important
information. They will have you give them verbal authorization for them
to talk with whomever else is there and then that person can give them
the basic information they ask for.
You should also tell the Social Security Representative on the phone
that you wish to be the Representative Payee for your Spouse or family
member. You will need a Representative Payee sooner or later and
mentioning it during your initial and subsequent interview with Social
Security will signal them that you are so disabled that you need someone
else to manage your money for you. It doesn’t matter if you are still
able to do some money management things now as no one needs to know.
Attachments To Enclose With Your
STD/LTD and SSD Disability Applications
I’m having you attach several brochures from HDSA, the non-profit
organization for HD in the United States, one from the National
Institutes of Health (Federal Government) and one from a major
university (Kansas City) to increase credibility of the information
you’re sending. In addition, you need to attach a copy of the document
showing your own DNA Analysis to prove you are actually carrying the HD
Information from the following brochures and URLs should be printed out
and the information highlighted in yellow and enclosed with your
application for SSD:
Include the following five informative
1. "Fast Facts About HD" To order one free copy from HDSA call
800-345-HDSA or ask you local chapter or affiliate for a copy. Here is
the link to download it if you have a printer:
Fast Facts About HD
On this brochure, I would neatly highlight
the following areas with a yellow Highlighter:
there is no
effective treatment or cure."
"Over time, HD
to reason, walk
• Personality changes, mood swings
• Forgetfulness and impaired judgment
• Unsteady gait and involuntary movements
• Slurred speech and difficulty in swallowing"
2. The second pamphlet is: "Huntington's Disease, A Guide For Families"
To order one free copy from HDSA call 800-345-HDSA or ask you local
chapter or affiliate for a copy. Here is the link to download it if you
have a printer:
Huntington's Disease, A Guide For Families
Inside this brochure I
would neatly highlight the following areas with a yellow Highlighter:
Pages 8-9 Movement Disorders
"Abnormal movements are the most
visible symptoms of HD. Early
signs of HD may include clumsiness,
loss of balance and fidgeting. Problems
with movements may include quick
involuntary movements, known as chorea,
twisting postures known as dystonia,
and reduced speed and accuracy
of fine movements. The movement disorders
of HD are often accentuated with stress
Pages 11-12 Cognitive Disorders
"HD causes more than movement
It also affects the ability of the brain to
understand, organize and retain information.
Changes in cognition (the ability to think)
can be an initial indicator of HD. HD
progressively affects cognitive functions such
as: organizing and prioritizing, controlling
impulses, beginning and ending activities,
creative thinking and problem solving. The
person with HD may become forgetful,
distracted or reckless."
Page 13 Emotional/Behavioral
"Among other things, HD causes
damage to the nerve cells in the brain that
regulate thoughts and feelings. These
unregulated emotions, caused by the disease,
may cause mood swings and irritability. The
patient may overreact to everyday events.
People with HD may say cruel things or
behave aggressively because of the changes
in their brains. It is important to know when
it is the disease “talking” and not the patient."
Paperclip the pamphlet open to page 12 after you have highlighted
3. I would also print out the following web pages, making sure to
include the information about where they are from to ensure credibility.
The first web page to click on and print out is:
National Institute of Neurological Disorders and Stroke
National Institutes of Health
Under, "What are the Major
Effects of the Disease?" I would neatly highlight the following text
with a yellow Highlighter:
“HD may affect the individual's
and other cognitive functions. Early signs
might include having trouble driving, learning
new things, remembering a fact, answering a
question, or making a decision. Some may
even display changes in handwriting. As the
disease progresses, concentration on intellectual
tasks becomes increasingly difficult.”
“In some individuals, the
disease may begin with
uncontrolled movements in the fingers, feet,
face, or trunk. These movements—which are
signs of chorea—often intensify when the
person is anxious. HD can also begin with
mild clumsiness or problems with balance.
Some people develop choreic movements
later, after the disease has progressed. They
may stumble or appear uncoordinated.
Chorea often creates serious problems with
walking, increasing the likelihood of falls.”
“The disease can reach the point
where speech is
slurred and vital functions, such as swallowing,
eating, speaking, and especially walking, continue
to decline. Some individuals cannot recognize
other family members. Many, however, remain
aware of their environment and are able to
4. The second web page to click on and print out is:
Kansas City Medical
I would neatly highlight
the following text with a yellow Highlighter:
“The clinical features of
Huntington's disease can
be thought of as a triad of emotional, cognitive
and motor disturbances. Symptoms include chorea
(dance-like involuntary movements), clumsiness,
slurred speech, depression, irritability and
apathy. Cognitive losses include intellectual speed,
attention and short-term memory.
Huntington's disease affects
people in different
ways. One member of a family may have
more trouble with clumsiness while another may
have emotional outbursts. Moreover, symptoms of
Huntington's disease in the same individual change
Your Own HD DNA Results Report
5. On your Diagnosis
Service Report I would highlight the following text with a yellow
Highlighter: “This individual
possesses the Huntington's disease CAG mutation and therefore is
predicted to be affected with or predisposed to developing the clinical
symptoms associated with Huntington's disease."
Please see my own DNA
report below for an example.
6. Once you have printed out all of the documents noted above and
highlighted the text that I’ve instructed you to in yellow, please
enclose all of these papers with your SSD application (even though they
say not to add any other paperwork).
How to Effectively Answer Questions On Social
Security’s Disability Application
You Can Also Use Similar Answers to Complete Your STD and LTD
Disability Report Adult - Form - SSA-3368-BK
Section I – Information About the Disabled Person
Questions A through I
Section II – Your Illnesses, Injuries or Conditions and How They Affect
You What are the illnesses, injuries or conditions that limit your
ability to work?
Huntington’s Disease is a degenerative brain disorder for which there
is no cure. My symptoms have been dementia, cognitive (forgetting,
inability to do two things at once, ability to comprehend is slowed and
decreased, can’t complete even simple tasks), mental and emotional
(irritability, loss of social inhibitions, confusion, apathy, can’t
control my anger anymore and severe depression), physical (clumsiness,
loose balance frequently, awkward gait, uncontrolled chorea movements
all over my body). Symptoms will continue to get worse until I can’t
walk, talk or swallow any more.
How do your illnesses, injuries or conditions limit your ability to
Increasing forgetfulness and loss of short-term memory make it almost
impossible to perform even routine tasks. Any stress caused by due-dates
or schedules exasperates symptoms and makes my symptoms more exaggerated
than they already are. Unabated emotions, especially irritability and
loss of social inhibitions makes working with others extremely hard as I
blow up easily and tell everyone exactly what’s on my mind, and then
don’t care what I have said or who I have offended. Constant chorea
movements and lack of balance control makes it impossible for me to
type, hold things, or get things.
C, D, E F & G
H If “yes,” did your
illnesses, injuries or conditions cause you to: (Check all that apply.)
• work fewer hours? (Explain below.)
• change your job duties? (Explain below.)
• make any job-related changes such as your attendance, help needed, or
employers? (Explain below.)
All of the above. Huntington’s Disease is an incurable, degenerative
brain disorder and once symptoms start they continue to get worse and
worse until you are afraid to do anything and lose the ability to do
simple ordinary tasks. It continues to worsen almost daily.
J. Why did you stop working?
I stopped working because my disease has progressively gotten much
worse and degenerated to the point where I can no longer control my
emotions, think properly, remember things, or make good sound decisions.
I get confused in once-familiar surroundings and fear, because of my
lack of balance and severe chorea movements, that I will either hurt
myself severely or do something that will hurt someone else.
Section III – Information About Your Work
Section IV – Information About Your Medical Records
Questions A-C, D1,2 and 3 and E1 and 2 and F
Section V – Medications
Section VI – Tests
Self-Explanatory (We will describe the genetic test under Section 9.)
Section VII – Education/Training Information
Section VIII – Vocational Rehabilitation Information
B) Would you like to receive rehabilitation that could help you get back
Check No and write in: Vocational Rehabilitation is not
helpful when you have Huntington’s Disease Dementia because ability to
learn and remember new tasks is poor and because I am more slow and
disorganized than before. My poor motor coordination, balance, and
constant chorea prevents safe employment in manual labor.
Section IX – Remarks
Huntington’s Disease is an incurable, degenerative brain disorder
that affects every part of an individual’s life. Characteristic features
of HD include involuntary movements, dementia, and behavioral changes.
Family members may first notice that the individual experiences mood
swings or becomes uncharacteristically irritable, apathetic, passive,
depressed, or angry. These symptoms may lessen as the disease progresses
or, in some individuals, may continue and include hostile outbursts or
deep bouts of depression. HD may affect the individual's judgment,
memory, and other cognitive functions. Early signs might include having
trouble driving, learning new things, remembering a fact, answering a
question, or making a decision. Some may even display changes in
handwriting. As the disease progresses, concentration on intellectual
tasks becomes increasingly difficult. In some individuals, the disease
may begin with uncontrolled movements in the fingers, feet, face, or
trunk. These movements—which are signs of chorea—often intensify when
the person is anxious. HD can also begin with mild clumsiness or
problems with balance. Some people develop choreic movements later,
after the disease has progressed. They may stumble or appear
uncoordinated. Chorea often creates serious problems with walking,
increasing the likelihood of falls. The disease can reach the point
where speech is slurred and vital functions, such as swallowing, eating,
speaking, and especially walking, continue to decline. Some individuals
cannot recognize other family members. Many, however, remain aware of
their environment and are able to express emotions.
Older Social Security Disability Applications
Here are examples of how I would fill out the questions on a
disability application, whether it be applying for LTD (Long Term
Disability) or SSD (Social Security Disability), or another State
sponsored disability program. Although YOUR individual symptoms may be
slightly different, which will change your individual answers to each
question, more importantly I hope you get the gist of how I've tried to
answer the questions, using HD symptoms in your explanations. Once
again, I'm not saying that this is the only way to do this, but hope it
will help provide others who are starting this process with ideas. If
you feel like you still need a little extra help, please e-mail me your
symptoms or problems you've been experiencing at work or home, or the
symptoms or problems your loved one is experiencing at work or home and
I will be happy to help you out!
1-Describe your symptoms:
HD is a degenerative brain disorder for which there is no cure. My
symptoms have been primarily dementia, cognitive (forgetting, inability
to do two things at once, ability to comprehend is slowed, comprehension
is decreased), mental and emotional (irritability, loss of social
inhibitions, confusion, apathy, running red lights and don't care, can't
focus on simple tasks, can't control my anger any more), physical
(clumsiness, uncontrolled movements all over my body, loose balance
frequently). See enclosures for additional information.
A. What brings on your symptoms or makes them worse?
Stress and fatigue aggravate symptoms.
B. If you have pain where is it?
N/A for Huntington's Disease
C. How often do your symptoms occur like day or week?
Intermittently all the time.
D. Have your symptoms changed since you began having them?
They've become more noticeable to me and others and have
progressively gotten worse.
E. How does your impairment affect your ability to complete routine
activities or chores?
Increasing forgetfulness and loss of short-term memory make it
extremely hard to perform routine tasks. Unabated emotions, especially
irritability and loss of social inhibitions, make working with others
very hard. Loose temper too easily and don't care either.
2-Do you take medicine?
A. What kind?
Anti-Depressants to control depression and suicidal thoughts that are
inherent with HD.
B. How often?
Daily. Will never be able to discontinue, only increase.
C. Does medicine help?
Presently, but from what I've read, will have to be increased
D. Is there anything else you do to relieve your symptoms?
Nothing. There is no cure for Huntington's Disease and it is
degenerative- my inability to perform normal, everyday things is getting
harder and harder which really frustrates me. HD keeps getting worse
until you die.
E. What do you do for exercise?
Water yard when balance is okay.
F. Describe what I do on an average day?
I get up late because of poor sleep, have to have breakfast fixed for
me as I can’t remember how to cook and because I drop things and burn
things and burn myself. I need help getting dressed and must be told
what to wear because I can’t decide. I can’t read because I get confused
and if distracted I completely lose my train of thought. I watch TV
mostly and am not able to remember some characters now or the plots. I
like to go shopping with my spouse. They must drive because I’ve had too
many accidents and near misses. I can’t handle money any more so my
spouse must pay for everything. I try not to walk very far of I fall
because of balance, walking and chorea problems. I loved to garden but
now I find myself falling flat on my face when I bend over to weed a row
so I can’t do this either. I used to go for short walks but now, because
of my dementia, forgetfulness and confusion I get lost too easily, even
in areas that were familiar in the past.. I used to cook most meals but
now can’t remember how to fix meals and if I’m reading a mean, I get
distracted and can’t remember what I was doing if the phone rings, or if
someone comes over. I must be reminded every morning and evening to take
my medication or I won’t remember. I have started chocking when I eat my
meals and this is very alarming to me. I need assistance getting into my
Pajamas at night and must be reminded to brush my teeth too.
7-What activities are you NOT able to do now because of your symptoms
that you were able to do in the past?
Afraid to do almost everything now as I have lost my self-confidence.
work/housework Burned self with grease because of clumsiness 3-4 times,
got written up 3 times for being rude to customers, drop and spill
things continually. Recreation, personal care like grooming bathing,
dressing I'm still able to do unassisted for now but much slower than
before. Too confusing sometimes too.
8-Do your symptoms affect your ability to do these things YES or NO?
• sitting: uncontrollable muscle jerks and twitches make sitting
• standing: intermittent loss of balance causes problems sometimes.
• walking: is starting to be harder and I find myself focusing on
• lifting/carrying: afraid to lift or carry for fear I'll drop load
if uncontrollable jerk happens.
• using your hands: more clumsy now, cut self frequently, and drop
• bending: unaffected yet
• kneeling, squatting: harder when experiencing balance problems
climbing - don't climb because I'm afraid of loosing balance while on a
• reaching forward: loss of balance makes uncomfortable at times
working or reaching overhead: loss of balance makes uncomfortable at
• hearing: interpretation or comprehension of words is getting worse
and must have others repeat things often.
• speaking: already experiencing problems remembering words, no
slurring yet, vulgar when I loose temper traveling to are from work:
Have begun running red lights and have already had to to quit driving.
• reading the newspaper:
can't do any more because of loss of attention span.
• watching TV: can't remember who is who or what's happening so isn't
enjoyable any more.
• driving the car: have already stopped driving because of repeated
accidents and I'm afraid of killing others or family when running red
• using the telephone: takes long time to recognize voices and to
recall numbers to dial. If people leave me messages I don't remember
10-Names of 2 people we can call who know of your condition?
I WOULD INCLUDE YOUR FAMILY DOCTOR, NEUROLOGIST, PSYCHOLOGIST,
PSYCHIATRIST, OR OTHER FRIENDS.
11-Do you have any significant mental problems or emotional? If yes
Yes, those normally associated with HD, dementia, personality
changes, drastic mood swings, loss of social inhibitions, cognitive
12-Do your mental emotional problems affect your day to day living or
working? If yes explain.
Don't want to get up in morning, medication helps a little but makes
sleepy and slower and dulls emotions.
13-Have you ever received any mental or emotional treatment tell why if
IF YOU'VE BEEN TO A PSYCHOLOGIST OR PSYCHIATRIST PUT THEM HERE,
OTHERWISE PUT "NOT YET"
14-Do you think you need a mental or emotional evaluation in regard to
YOUR disability benefits? If yes tell why.
Possibly, since cognitive and emotional symptoms are all part of HD.
15- Do you have a counselor?
PUT IN NAME OF YOUR PSYCHOLOGIST OR THERAPIST IF YOU'VE SEEN ONE
REGARDING HD OR HD-RELATED SYMPTOMS.
16-Do you need another person help or need reminders or supervision in
performing/completing the following activities? If yes, explain. Yes or
• bathing: Yes, don't see need to bath any more.
• brushing your teeth: Yes, need help remembering to brush teeth.
Can't hold toothbrush because of chorea.
• fixing your hair shaving: Yes, Because of movements must use
electric shaver because have cut myself before using razor.
• selecting appropriate clothing: Yes, can't decide which clothes to
• cooking: Yes, keep forgetting to turn off burners and stove.
Burn myself with hot liquids and grease because of dropping and
• paying bills: Yes, have problems remembering when they're due or
where I put them to be paid.
• visiting: Don't visit
because I can't drive anymore.
shopping/making change: Slower than normal and not accurate at times
• riding the bus: Maybe, get confused often and may loose directions.
Have gotten lost before in familiar surroundings and own neighborhood.
• taking care of children:
No, all children are grown up.
17-Do you have difficulty keeping your mind or attention on a
task/activity? If yes explain.
Yes, get distracted easily now, can't focus or remember well.
18-Do you have difficulty completing task? If yes, explain.
Yes, get distracted easily now, can't focus or remember well.
19-Do you have problems making decisions? If yes, explain.
Yes, can't make up my mind or I act impulsively and do things I would
have never done before.
20-What upsets you?
Change. Noise. Multiple instructions. Become frustrated not being
able to perform as well as I did before. Can't control my emotions
21-When your daily routine changes how do you react?
I can't cope well and find myself unable to figure out what to do
22-When you have stress /or pressure how do you react?
My chorea movements increase and I become more animated and begin to
slur my words and not think logically. I also loose my temper easier.
How often does it happen?
Depends on what "triggers" it during the day. Sometimes something
small and sometimes something big. I try to avoid anything that would be
stressful now like never using the freeway and never driving during rush
hour, keeping radio off so there are no distractions, etc.
23-How do you get along with other people?
I have a very short fuse now and say exactly what's on my mind.
Before I know I've done it I've told someone off. I am very aggressive
now and don't care what others think or if I've hurt them with what I've
Activities Of Daily Living Questionnaire To Claimant
I. Self-Care Activities
1. Please describe what you do on an average day:
I get up, need help showering, grooming and dressing because of
constant movements, loss of coordination and having to balance myself on
something else continually. Can fix something simple to eat but eating
requires extra time because of chorea movements. I’m afraid to use
burners on stove because I’ve forgotten to turn them off for several
hours before. I can’t even clean a little any more because even small
things tire me out too easily and must take constant breaks. Finishing
tasks is hard because if the phone rings or I’m interrupted, I forget
what I started to do before. I watch TV or listen to the radio. I can’t
read any more either because I can’t focus and because of constant
chorea movements. I can’t drive any more so I just stay at home.
2. Do you need help taking care of your personal needs, bathing and
grooming? _ Yes _ No
If yes, what kind of help? Increasing forgetfulness and need for
constant assistance accomplishing routine things such as showering,
dressing, and grooming because of balance problems and constant chorea.
3. What is the most difficult self-care activity for you to do and why?
Every single self-care activity is extremely hard because of chorea,
short-term memory loss, and balance problems.
4. Describe any change in your ability to do these self-care activities
since your condition began and explain the cause for the change:
My ability to care for myself will only worsen as my degenerative
brain disorder, Huntington’s Disease continues to get worse.
5. Do you take any medications for your condition _ Yes _ No If yes,
please list the names and how often you take them.
I take Zoloft, an antidepressant daily to control depression and
suicidal thoughts that are inherent with Huntington’s Disease. I will
never be able to stop taking it, and will eventually end up increasing
dosage as disease progresses.
II. Home Activities
1. Where do you live (house, apartment, mobile home) and who lives in
the household with you?
I live with my husband/wife.
2. Do you plan and cook your own meals? _ Yes _ No If no, do you
normally not cook, or are you unable because of your condition? How does
it prevent you?
It is too confusing to plan meals ahead or to cook more than one
thing at a time. I am too afraid that I will leave a burner on again and
possibly burn the house down. I used to cook all the time and loved
preparing meals for my family.
3. Do you do the household cleaning, clothes washing, yard work or any
other work around the house. _ Yes _ No If no, why not? If yes, please
describe what you do:
I cannot clean anymore because I knock things over or spill them
because of my chorea and balance problems, and get too exhausted.
4. When you start a job, like washing dishes or cleaning a room, do you
have trouble finishing the job _ Yes _ No If yes, what happens?
Yes, if I get interrupted or see something else in the room that
catches my attention I lose focus and forget what I was doing and leave
the job half done. I can’t wash dishes or clean anymore because of my
chorea movements and balance problems. Even when I try to help out I
don’t clean everything as well as I once did and although I realize
this, I don’t care now.
5. Do you do any shopping _ Yes _ No If yes, describe what you shop for,
how often and how long it takes you to shop.
No, I haven’t been able to drive for over 4 years now and must rely
on others to take me with them. Can’t do shopping any more because I
don’t have the strength or balance to any more. My chorea has knocked
things on the floor and broken them before.
6. Please describe any changes in your ability to do these activities
since your condition began and explain the cause for the changes.
Everything has gotten worse. There is no cure for Huntington’s
Disease and it is degenerative- my inability to perform normal, everyday
things is getting harder and harder which really frustrates me. HD keeps
getting worse until you die.
III. Social and Recreational Activities
1. Do you get along well with the people in your household _ Yes _ No
Unabated emotions, especially anger and irritability, when combined
with loss of social inhibitions make me blow up and scream and yell and
throw a temper tantrum at any little thing, or if I don’t get my way.
Everyone must walk on eggshells around me for fear of setting me off.
2. Do you get along well with other people in general. _ Yes _ No
I used to before becoming emotionally volatile and loosing my temper
for any little reason. Others don’t understand this disease and why I am
like I am now. I guess it’s scary to them.
3. How often do you visit with friends or relatives?
I don’t visit very often because most of my friends quit coming by
after my diagnosis. It’s hard for them to take me declining and behaving
uncharacteristic of the person they once knew. We make time to stay with
relatives now but not for long as I don’t want to be a burden to them
and it’s not as frequently as we used to.
4. Are you active in any religious club's or any other groups. _ Yes _
No How often do you go?
I cannot participate any more because of not being able to drive and
being too much responsibility for someone else to come and pick me up.
My speech is also unintelligible and I cannot initiate conversations.
Others are afraid I’ll fall and hurt myself.
5. What are your hobbies or pastimes (reading, handicrafts, hunting,
biking, hiking, bowling, watching TV, etc.)?
I cannot do anything I loved to be before because of coordination and
chorea-related problems. I can’t focus long enough to read and don’t
enjoy it anymore because of terrible short-term memory, I can’t remember
what I just read about and this frustrates me.
6. Describe any changes in these social and recreational activities
since your condition began and explain the cause for the change.
I have been unable to do any of my favorite things since progressing
and I will loose even more as Huntington’s Disease relentlessly
progresses. Since I’ve also lost most of my self-confidence I’m even
afraid to try anything either.
1. Do you drive a car _ Yes _ No
I haven’t been able to drive for over 4 years now.
2. Do you use the bus _ Yes _ No
No I cannot. I can’t remember where I’m going and get lost easily.
Can’t walk to bus stop anyway.
3. Do you run errands by yourself (like going to the post office) _ Yes
No, I cannot run any errands as I cannot get around by myself.
4. Do you manage your bills and other business matters _ Yes _ No
I am no longer able to stay focused long enough or even remember how
to do most everyday things like paying bills anymore. Very frustrating.
5. Do you use the telephone book to find a number you do not know _ Yes
Can’t call out using a phone and can’t use a phone book either.
If no to any of the above questions, please explain here.
1. Have any of these things changed since your condition began. _Yes _
No Why did they change?
I haven’t been able to do anything listed above for over 4 years and
as Huntington’s Disease is degenerative and as more brain cells continue
to die I will be unable to do more and more.
2. Have you tried to work since your disability began _ Yes _ No
I haven’t tried since everything is already too frightening and
without any self-confidence I fear I would just feel worse and more
frustrated about my inability to do what I used to do than I already do.
Sample Disability Letter
The ability to work and be productive in integral to our and others
perception of ourselves. When a person has a disease or disability that
prevents them from working as they used to be able to, they still should
be able to work in a different fashion. In some countries the issue of
disability is handled by the family taking over the support and care of
the person who can no longer care for themselves or be employed. In
other countries a significant governmental safety net is available to
provide supportive and rehabilitative services. In some countries, such
as the United States, the safety net is available (in late 1995) but
only after some significant hurdles have been overcome to prove that the
person in question is not able to care for themselves any longer.
The letter below has been slightly changed from the sample given in the
back of the book by Neal Ranen from the Huntington's disease Clinic at
The Johns Hopkins University.:
December 12, 1995
Springfield, MO 12345
Re: Thomas Smith, KUMC No 1234567
Dear Ms. Jones;
This is to provide medical support of the disability application of Mr.
Thomas Smith who has Huntington's disease.
Mr. Smith was seen in our Huntington's disease clinic for the first time
on November 15, 1994 and was diagnosed as being affected with
Huntington's disease (HD). Symptoms began in 1993. We have followed Mr.
Smith since then and are confident of the diagnosis based upon clinical
observations and his positive family history of relatives (father, uncle
and his sister.) with Huntington's disease. MRI findings on September
19, 1995, included atrophy of the caudate nuclei and the cerebral
Huntington's disease is an inherited neurodegenerative disorder that is
gradually progressive, ending in death from infection of general
debilitation an average of 16 years after onset.
There are three characteristic clinical features: (1) loss of the
ability to control bodily movements; (2) loss of ability to think and to
act quickly, to learn and to remember and (3) apathy and severe
depression, often resulting in suicidal behavior. Patients also exhibit
poor social judgment and may be irritable and aggressive.
When last examined on December 15, 1995, Mr. Smith had abnormal eye
movements, slow/dysarthric speech, poorly coordinated finger-thumb
tapping, and rapid alternating movements, a wide-based gait with poor
heel to toe walking, choreiform movements and brisk deep tendon
reflexes. He is at high risk for falling. The sensory examination,
Romberg and cranial nerves are not affected in Huntington's disease.
Mr. Smith is slow and inaccurate with calculations, has poor recent
memory, and at home cannot remember to carry out routine tasks such as:
taking telephone messages, cooking or doing the laundry. His employer
reports that he can no longer perform his duties on the assembly line.
Frequently he made costly errors in filling customer orders when he was
moved to a less demanding job in the factory. For these reasons, he
cannot work there any longer. The patient last worked on July 26, 1995.
We do not routinely administer IQ tests to people with Huntington's
disease for purposes of disability assessment. Although they decline,
the IQ remains above 70 and does not adequately reflect the person's
ability to work. This is because the person can perform some tasks when
continually prompted, as is the case with IQ testing. However, people
with Huntington's disease cannot perform even a simple sequence of tasks
unprompted as would be the case at even a low job level.
Vocational Rehabilitation is not helpful to people with Huntington's
disease, Their ability to learn new tasks is poor. They are slow and
disorganized. Their poor motor coordination prevents their safe
employment in manual labor.
Mr. Smith has suffered from depression associated with Huntington's
disease since 1994. He is apathetic and irritable. These symptoms also
interfere with his ability to work. In summary this 39 year old man was
well until 1994 when Huntington's disease began. He has been unable to
work since September 30, 1995 because frequent costly job related errors
and the fact that he can no longer drive to work because of his
We hope that you will grant disability to the fatally ill individual. If
you wish further information, please call us at (xxx) xxx-xxxx.
Richard M. Dubinsky, MD
Associate Professor of Neurology
pc: Dept. of Medical Records, KUMC
cc: Mr. Thomas Smith
789 West 3rd Street
Kansas City, MO 65432
Please contact Phillip
Hardt if you have ANY questions or need help completing your STD/LTD or
SSD applications! Phil can be reached at: email@example.com or you can
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