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Social Security Compassionate Allowances Update · The Eye Believe Podcast

0:03
hey omies welcome back to
0:04
another episode of the Eye Believe podcast
0:07
I'm Danet and today I'm joined again with Molly Vocino
0:09
who is out at Thomas Jefferson in the East Coast area
0:13
um for those of you guys who don't
0:14
remember her she was a social worker
0:16
that we had on our podcast
0:18
I believe it was a little bit earlier
0:20
this year when we talked about just kind of resources
0:23
that we can you know access as a uveal melanoma patient
0:26
and I thought who better to bring back to talk about the recent
0:30
compassionate allowances
0:31
announcement with the Social Security disability
0:35
area I guess
0:36
than Molly so Molly thanks for joining us again
0:39
absolutely thanks for having me okay so let's just like
0:43
can you give us a little bit of a general summary
0:45
like maybe for those of you guys who haven't
0:47
heard of what's what's going on why is this relevant
0:50
what is the compassionate allowances list
0:53
yeah absolutely so um
0:55
compassionate allowances is a designation
0:58
that allows a certain
1:01
list of serious rare terminal diagnoses to be
1:07
to have sort of priority in getting
1:08
fast tracked on getting reviewed
1:11
when you're applying for federal
1:14
disability through Social Security so
1:16
the recent update that
1:18
brings us here today is that on August 10th
1:22
metastatic uveal melanoma was added to this list
1:25
and so what that essentially
1:27
means is that if you are a metastatic
1:30
uveal melanoma patient who is applying for SSDI or
1:34
SSI and I'll talk about the differences
1:36
between those two in a minute you basically
1:39
have a high priority
1:41
at getting that application reviewed
1:44
within a few weeks which is compared to the standard
1:48
review time is five to eight months for other diagnoses
1:54
and you know if there are issues or delays
1:56
or if they need more information
1:58
sometimes it can go even longer than that
2:01
or if there's a denial and you have to appeal
2:03
I mean I've seen folks struggle
2:05
for over a year to get approved for benefits so
2:09
um to have this diagnosis on this list
2:13
not only just validates
2:15
for all of you who are living with the reality of this
2:19
super complicated and challenging diagnosis it also
2:24
gives you that open
2:25
door to have easier access to benefits
2:28
that you're entitled to
2:30
yeah absolutely I I guess I feel like I
2:32
remember seeing this and and my initial impression
2:35
because I just didn't
2:36
fully read the article is I was like oh like this means
2:40
like I I didn't even connect it to disability benefits
2:43
at first I thought it was something to do with like clinical trials
2:45
and like FDA approvals
2:47
and I was like oh well that's good too like but
2:49
anyway so for you any of you guys who would like to read the news article
2:53
um from August 10th when they made this announcement
2:56
we'll go ahead and link that in the show notes
2:57
as well but but I do want to cover the difference
2:59
between Social Security income and
3:01
Social Security disability income
3:04
and why is that relevant
3:05
in this you know in this specific instance
3:07
yeah for sure so
3:09
SSI actually stands for Supplemental Security Income
3:12
and it's a need based income program
3:15
through the Social Security Administration
3:18
for folks who are either over 65 and have
3:23
low income and limited resources
3:26
or folks who have low income and limited
3:28
resources that have under 65 and have
3:31
a disability diagnosis
3:34
SSDI comparatively is a disability
3:38
income program through Social Security it stands for um
3:42
supplemental no that
3:44
SSI is Supplemental Security Income
3:46
SSDI is Social Security Disability Insurance
3:51
and essentially it is a disability
3:53
income program for workers
3:55
who have a qualifying diagnosis and who have earned
4:00
enough work history at a job that pays into
4:04
Social Security taxes or self employment taxes
4:07
um to provide income monthly
4:11
when you are faced with a diagnosis that qualifies
4:15
and so the you know the compassionate allowances
4:20
is applicable to both SSI and SSDI
4:25
and luckily you don't have to know
4:27
and we can talk a little bit more about this
4:29
when we talk about how you apply but
4:30
you don't have to know which category you fall into
4:33
before you apply you can just simply apply
4:35
through Social Security for disability as a
4:38
sort of blanket application and they will sort
4:40
you into the category based on your work history
4:43
but if you are interested in knowing
4:45
what your work history is and how many
4:48
you know how much time you've paid into this system
4:51
you can make an account on Social Security's website
4:54
um and it'll review your work history for you
4:57
and in terms of that eligibility piece
5:00
the work history is measured in credits they call them
5:04
and so the credits are earned based on um
5:09
a sort of dollar amount of wages that you earn
5:12
in any given year so
5:14
you have to you can and they cap it as well so
5:17
you can earn up to four credits in a year and
5:22
in order to earn one credit you have to earn
5:25
it's about 19 hundred dollars in eligible wages and so
5:30
that caps it really you
5:31
you you can earn the maximum amount of credits
5:34
that you are able to in a year um by earning
5:38
it's it's like a little bit less than $8,000
5:41
in in wages and then the amount of credits
5:44
that you need to qualify for
5:46
SSDI depends on your age bracket
5:49
so younger people need less credits to qualify
5:53
older people need more credits to qualify
5:56
and so that work history is going to really determine
5:59
which category you fall into if you're applying
6:02
for federal disability benefits at any point
6:06
okay well this is news to me because I
6:08
started the application
6:09
like pretty much within a week or so I think of
6:12
you know discovering
6:13
that it was on the compassionate allowances
6:15
list for like our diagnosis to be
6:18
fast track at least in the in the consideration
6:20
portion of this application
6:22
um but I had no idea that we could technically apply
6:26
and potentially qualify
6:28
for you know like I guess I thought it was only for
6:31
SSDI I didn't think that it would even be
6:33
relevant to potentially be SSI
6:36
um so that's definitely interesting um
6:39
I mean obviously I think it it's gonna vary
6:42
person to person like work history age pretty much like
6:47
like all of the different things but
6:48
but can you give us maybe like a general overview
6:51
like in your experience
6:52
with like working with with patients
6:54
in the hospital system like like maybe a kind of
6:59
I don't know pretend person who might qualify for
7:02
SSI versus someone who might qualify
7:05
not for SSI but for SSDI sure so
7:09
for folks that have a diagnosis like uveal
7:12
metastatic uveal melanoma or other diagnoses that meet
7:16
criteria for
7:17
SSDI whether they're on compassionate allowances or not
7:20
um the application process is going to um
7:25
sorry the eligibility process
7:27
is going to really depend on that work history so
7:30
if you're someone who has say
7:33
maybe is in their 30s or 40s has worked
7:37
let's say for example a maybe a construction job where
7:40
a lot of it has been under the table
7:43
um you maybe don't get regular pay
7:45
stubs maybe that income is not technically taxed
7:48
um you might fall into the SSI category
7:52
based on how much or little
7:55
you've worked at any a job that has paid
7:57
into those federal taxes
7:59
um if you are a self employed let's say you're a 60
8:04
year old self employed individual um
8:09
if you had not accounted for self employment taxes
8:13
that are paid consistently to the government
8:17
then you might also be in a situation
8:19
where you don't qualify for SSDI
8:23
and that can get tricky too if you are someone who
8:27
maybe has been self employed
8:29
has not paid into those taxes but earns an income
8:33
that is higher than what the SSI limit might be
8:36
I've had a couple of patients who had just
8:40
not either not been given good advice
8:42
when they were building their business
8:44
or operating things or of course didn't anticipate
8:48
something like this happening
8:49
and couldn't have had the foresight to know exactly
8:52
how this would affect them and they
8:53
were not eligible for any federal disability benefits
8:57
at all which put them in a really difficult position so
9:01
it's really that eligibility is based on
9:05
that work history and in theory
9:06
if you haven't earned those work credits you
9:10
are in a position to hopefully qualify for SSI
9:13
but it's gonna be based on your income level and your
9:18
resources or assets
9:39
okay I think that makes sense um it's obviously
9:41
like there's a lot of logistics
9:42
here and I'm sure that a lot goes into you know the application
9:45
process um
9:47
not only from like a patient
9:48
side you know if you're the one submitting
9:49
the application like
9:51
I can speak from experience if you're
9:53
you know a metastatic patient and you have been
9:56
navigating the metastatic space for a number of years
10:00
um you have a lot of doctors
10:01
and you have a lot of medical history
10:03
and so like there's a lot going on there within the application
10:06
but it sounds like kind of on the other side of it you know from the
10:09
Social Security office's perspective like
10:12
there's a lot that they consider
10:13
and a lot of it is very unique person to person like
10:17
very uh very specific to each case
10:20
and um I can imagine like that that would make it
10:24
ordinarily take what did you say like five to
10:26
six months or five to eight months or something like that
10:29
um yeah
10:29
so having the compassionate allowances designation
10:32
obviously big huge
10:34
step up in the game as far as having your application
10:37
considered um so I guess let's just say you know
10:40
I mean we we can just use me as an example um
10:43
I'm a metastatic patient right I've got uveal melanoma
10:46
um let's pretend I haven't done the application
10:48
like can I start this application myself
10:50
or is there like a significant
10:52
benefit to potentially like working
10:54
you know side by side with a social
10:55
worker like yourself um to streamline the process
10:59
I just kind of have a better understanding I guess
11:01
yeah I mean I think it never hurts to have a conversation
11:04
with somebody who
11:05
knows the system a little bit to prepare
11:07
you for what to expect not only from the application
11:10
but from the review process and just and beyond um
11:14
but you definitely
11:15
don't have to if you don't have access
11:16
to someone like me or somebody
11:18
through your doctor's office who has knowledge of this
11:21
um you definitely can start on your own and
11:25
for most people the most accessible way to apply
11:28
is online through Social Security's website
11:31
um and as you probably
11:33
remember if this is how you applied you can pause
11:35
and return to the application
11:37
and sort of take it at your own pace
11:39
um'cause it's tedious it's it's
11:41
long it's a lot of questions
11:42
a lot of repetitive questions that kind of sometimes
11:45
feel like they're trying to catch you in some kind of
11:48
lie or something and which doesn't
11:49
always feel good when you're filling
11:51
that out but be aware of that and so it's
11:54
important to be consistent with your answers it's
11:56
important to be organized before you even open it up
11:59
with some of your medical history
12:01
nearby so you can reference
12:04
important dates biopsy results um you know
12:07
important dates of treatments or hospital admissions
12:10
doctors names and contact information
12:12
cause even though you aren't required
12:15
to submit medical records directly yourself
12:18
with the application the it's important that you record
12:23
things in an as much of an accurate
12:25
way so that when they then go
12:27
The Social Security Administration
12:29
then goes to contact your medical
12:31
department to request those records
12:35
they are easily able to match things up based on the timeline
12:39
that you've put in and so being organized with if you
12:43
have if your you know medical team has a a portal with
12:47
records a my chart system or if you have
12:51
you know paper records from recent visits
12:53
you know good to have those things
12:54
available so you can reference them when they ask for
12:58
you know important dates and information like that
13:01
um yeah and then yeah I think you know you even even
13:05
you know at at my institution at Jefferson
13:08
you know the social workers on the team were
13:10
were all as knowledgeable
13:11
as we can be with you know these systems
13:14
and applications but
13:16
you know because the application is so tedious
13:17
so individualized and
13:19
we don't have the bandwidth to sit and complete the application
13:22
start to finish with patients and help them submit it
13:25
um we have a a legal clinic
13:28
that can help a small subset of patients
13:30
that live in the Philadelphia area to apply
13:34
um and that's a really wonderful resource and if you
13:38
you know I have are
13:39
receiving care at an institution that
13:42
has access to a resource
13:43
like that if if it's feeling really daunting
13:46
or if you are
13:48
you know limited in your access to the internet
13:51
or limited in your you know visual deficits
13:55
that might make an online application
13:57
challenging for you having a you know professional
14:01
that walks you through it whether it's
14:03
through your care team through a legal service um
14:08
or even you know
14:09
instead of doing the application online
14:11
having the option to do an application
14:14
over the phone with Social Security
14:15
making an appointment with them to do that or at a Social Security
14:18
office so that
14:19
you know there's a little bit more accessibility
14:22
if that's something that you struggle with but
14:24
if you're reasonably tech savvy
14:26
if you're organized with your medical records
14:29
you know it's it's definitely
14:31
something that you can do on your own
14:33
yeah for sure well I mean speaking from experience
14:36
it was very tedious to fill it out I am a pretty
14:41
you know as patients go if you guys know me personally
14:44
you know that I'm very heavily involved in my medical care and
14:49
and I feel like it's
14:52
very redundant um
14:55
it
14:55
it kind of just you know because it took so long like and I did it all in one sitting
14:59
which maybe was that was a choice um
15:02
it probably took me like two or three hours
15:04
like maybe and I you know I took a I took some breaks
15:06
here and there but I did have um
15:09
I did have some support I tapped into like
15:13
like I have used chat GPT
15:15
to kind of like run through my medical history
15:17
and occasionally kind of like
15:20
interpret scan results and just help me understand
15:22
in layman's terms like you know what does this mean
15:24
and so for the most part like this you know internet
15:29
buddy I guess um
15:32
has
15:32
made it a lot easier for me I think in some ways to like kind of compile
15:36
that information
15:36
and keep it all like a almost like a running
15:38
journal of like what's happened and when
15:40
um and so like those dates can line up
15:42
I do think I mean like as far as dates go like
15:46
some of the stuff I mean I've been I've been metastatic
15:48
for four plus years and so like some of the stuff
15:51
I mean maybe I I can
15:53
pinpoint an exact date but I also like I just used
15:56
months like I just did like month and year because
16:00
that just made the most sense to me for how comprehensive
16:03
everything is
16:05
but I mean there's there's just so many pieces
16:08
to it that yeah like I mean I totally agree
16:10
like being organized in some way whether it's that you prepare
16:12
ahead of time or that you're actively working
16:14
with someone who's kind of like somebody's in charge of the medical
16:17
records and then you are
16:18
filling it out or vice versa like
16:20
I feel like that would be that would be helpful um
16:22
especially if you're somebody
16:23
who gets kind of overwhelmed
16:24
by like looking at just the kind of broad
16:27
scope of what's been going on in your
16:29
in your diagnosis history um
16:31
or like if you've forgotten or you've changed doctors
16:33
a lot of times you maybe you've moved like
16:36
I can see like that kind of complicating the
16:38
the history of like oh yeah like when did that happen
16:40
and like I mean I don't know Molly
16:43
I feel like cancer patients
16:44
we have either trauma brain
16:45
or treatment brain and so like
16:49
sometimes information
16:51
just does not come the recall doesn't happen totally
16:53
fast totally yeah
16:55
yeah and so yeah being as organized as you can taking
16:58
notes when you can't always rely on your memory
17:01
and referencing
17:02
yeah information that you've kept track of over time um
17:05
and what I tell my patients is listen if you're
17:08
while you're
17:08
even though I can't sit with you and do this step by step
17:11
when you're filling it out if you come across a question
17:13
that you're not quite sure how to answer
17:15
or you don't know if you're interpreting it correctly
17:17
take a screenshot email it to me call me text me and
17:20
we can answer that in real time if I'm not immediately
17:22
available you can pause it and return
17:24
back to it when you have the answer
17:26
that you need and so
17:27
whether it's a social worker or somebody
17:29
on the medical team or somebody
17:31
else in your life that maybe has knowledge of this
17:34
to be able to you know ask for guidance
17:37
when you're not sure so that you're not
17:39
just answering a question
17:41
hoping for the best that you've
17:43
interpreted it correctly you know knowing
17:45
you know asking for help when you need it is is good
17:48
yeah I mean absolutely
17:50
um so as far as the application process
17:52
I guess first question is you know
17:54
since this announcement
17:55
have you had anyone in the uveal melanoma space obviously
17:59
we're not gonna give names
17:59
but have you worked with any patients
18:01
who have submitted the application
18:03
and since that you know compassionate allowances
18:06
list was announced
18:08
and if so does anyone have a decision
18:10
you know it's been what
18:12
barely over a month since the announcement happened
18:14
like so if somebody
18:15
say did the application on like the 12th um
18:18
like have you had anyone who has been able to get a
18:20
response like within that period of time I I haven't
18:24
had anyone that I've been able to follow through
18:26
through that application
18:27
I've had one or two people who've contacted me and said
18:30
hey I I heard about this and I've been thinking
18:33
about applying
18:34
so does this mean that now is a good time and then we talk that through
18:37
but
18:38
both of those people I haven't heard back whether they actually
18:40
finished the application
18:41
and got approved but conceivably if somebody
18:43
since that announcement has
18:45
started and completed an application
18:47
they should have had a decision by now
18:50
I think it's reasonable to expect that okay so then
18:53
say you're a patient like those of you guys listening
18:56
maybe you've applied
18:57
maybe you're planning to apply after you listen to this episode
18:59
um so Molly like if someone who's listening
19:03
say they do the application today
19:04
um and they get to maybe a month or two maybe six weeks out let's just say like six weeks
19:09
um 6 weeks since they submitted the application
19:12
they're pretty sure that they you know they haven't
19:14
missed any any mail or emails like basically asking
19:18
for more information right like to like
19:20
continue the application
19:21
or like make sure that everything is submitted
19:24
they've submitted medical
19:26
not not like their own medical records
19:28
but they've submitted the medical release
19:29
form that like allows for uh is it the DDD uh to like
19:34
dive into your medical
19:35
records and and pull out if needed um
19:37
they haven't heard back
19:38
right we know the compassionate allowances list exists
19:41
um
19:42
what is a step that a patient like that could take to
19:45
get a little more clarification on like what's going on
19:47
I know the online portal is available but like
19:49
can we go beyond that
19:51
yeah I mean I would definitely say within
19:53
48 hours of completing your application you should plan
19:57
to log back into the portal
19:58
and make sure that the portal is registering
20:01
that you've submitted a completed application
20:03
and it should be able to show you a percentage reviewed
20:08
you know you've reached it's been
20:10
we're 70% there to your application
20:12
being reviewed or you know whatever the case may be
20:14
um and then within
20:17
I would say within a week of submitting the application
20:20
it's I think a good practice to
20:22
carve out some time and make a call to Social Security
20:25
trying to stay ahead of a situation where
20:29
things are delayed
20:30
because maybe something is missing and it's not registering in the portal
20:33
or you know you weren't otherwise
20:34
notified or you missed a communication um
20:37
so carving out some time because it you know you could be
20:40
I mean you could get through quickly
20:41
you could get through within 15
20:42
minutes but you might you might be on the phone for over an hour
20:45
waiting on hold with Social Security um just to
20:48
follow up with a phone call but let's say you either
20:51
did both of those things or you did neither
20:53
of those things and weeks have passed
20:56
month six weeks and you haven't heard anything um
21:00
I think that's a good time to log back into the portal
21:03
see what you can tell from that if it doesn't seem
21:06
like there's been any
21:07
movement or it seems like something is wrong
21:09
following up with a phone call to Social Security um
21:13
and
21:14
trying to get to the bottom of where things are and in a lot of cases
21:18
you'll be assigned a contact as well
21:21
through Social Security
21:23
within the first couple of weeks to for follow up
21:26
that doesn't always happen but I've
21:28
I've heard it happen a lot more recently
21:29
where you're assigned an actual
21:30
human being that calls you to say hey we
21:32
received your application um
21:35
I can't say those people are any more easy to contact
21:39
than calling regular Social Security but
21:41
I think it it warrants a phone call if you have not
21:44
if you're
21:44
haven't to your knowledge received any communications
21:47
and it's not clear from the portal
21:48
and it's beyond that time frame that we expect
21:52
okay so I feel like that makes a lot of sense and um
21:56
is this gonna be like just a general Social Security
21:58
contact number or is this like more like a local office
22:02
I mean either or but um
22:05
if you don't have a local office or if
22:08
because the local offices are gonna be
22:11
not always able to source a
22:13
an application that you didn't work on specifically
22:16
with them so they might only be helpful to a certain
22:20
point so if you didn't work with a specific
22:23
local office or you weren't assigned a contact
22:25
with a local office since you were applied
22:27
you you know or you're just not sure you're not sure
22:30
where they are how to contact them calling
22:32
through the main Social Security number would be the best way
22:35
okay that makes sense um so like just for you know
22:38
reference I guess from my experience
22:40
so far like I was able to submit it I can see
22:43
you know that that kind of like bar of completion
22:46
um I'm probably someone who should have called you know
22:49
the week or so after and I'm like sitting here listening going oh well
22:53
can't go back and do that now but I can try to call them
22:55
that's been on my to do list this week is to try to give them a call
22:58
um but at least from like the request for general
23:01
information and like kind of where they suggested
23:03
I send if I was gonna mail in or FAX information um as
23:07
opposed to like uploading documents to the portal
23:09
which that was what I chose to do cause I would
23:11
rather do that um but
23:13
they did assign me like a local office
23:15
at least for like where I was supposed to send that information
23:17
so I'm crossing fingers
23:18
that if I call that local office
23:20
that they'll actually know what's going on
23:53
um yeah I think they should
23:55
yeah so um what would you say like
23:58
you you mentioned that like if you apply
24:01
and you you know you you designate
24:03
like somewhere in the there's like a spot
24:05
where it says you know what is your diagnosis
24:07
or like what is what's going on basically
24:09
like to be as clear as possible
24:11
should we be using the language like there to like
24:14
say metastatic uveal melanoma like basically exactly
24:17
the language that it uses
24:18
on the compassionate allowances list okay yes
24:21
yeah because I mean that's not just metastatic
24:25
that's not to say they won't catch it if you use
24:27
choroidal malignant melanoma with liver Mets
24:31
or if you know whatever you you
24:33
sort of specify it in slightly different language
24:36
they're gonna review that that
24:37
they're gonna have a medical person
24:38
review that and be able to
24:40
file it under that category but
24:41
it's definitely not a bad
24:42
idea to use the exact language that they use
24:45
starting with metastatic uveal
24:47
melanoma and then certainly specifying
24:49
if you had a choroidal
24:51
or you know wherever a ciliary body or whatever
24:54
um but the um another good tip
24:57
when you're completing the application
25:00
there is when you go on to the compassionate allowances
25:03
list there's a a a web page that gives
25:07
a a very detailed overview of the diagnosis
25:11
and the expected
25:13
um you know sort of impairments
25:16
and the course of the disease it would not be a bad
25:19
idea to reference that document to pull language
25:22
from their own mouth basically to describe
25:26
the experience
25:27
that you're having with your diagnosis as you answer those questions
25:30
to again give them
25:31
you know as much language in their own you know words
25:35
that match up with the criteria that they're looking for
25:39
but again now that we have the compassionate allowances
25:42
they are not going to fine tooth you know look
25:46
wave through your application
25:47
with a fine tooth comb for all of those medical um
25:52
uh sort of details beyond being able to
25:55
verify that you have this diagnosis
25:57
based on your medical records so where other diagnoses
26:00
that are not on the compassionate allowances list
26:02
they're gonna really you know they're gonna really
26:05
scrutinize those specific questions about
26:08
you know what is it that you're struggling
26:09
with why can't you perform normal work duties
26:12
you know to
26:13
verify that okay this isn't on the list but it
26:15
certainly meets criteria and that general
26:18
criteria is about having a disease or a diagnosis that
26:22
makes it difficult for you to be able to
26:25
perform your normal job functions
26:26
for at least 12 months and or is expected to
26:30
result in end of life and so those criteria again are
26:36
imbedded within
26:38
sort of the Assumption that those are gonna be
26:40
there that the diagnosis is gonna persist
26:42
for 12 months and cause significant impairment
26:45
when they're on that list so it's a little less
26:47
important to really
26:49
firmly state that in your application
26:51
but still definitely helpful
26:53
yeah no I mean I could see how that would be like super helpful
26:56
um and then I think the other thing that's
26:58
important to recognize too is like I mean
27:01
I don't know a whole lot like as a 34 year old
27:05
you know within the realm of
27:07
mostly a stay at home mom but like you know kind of have had like a part time
27:11
you know self employment type jobs things like that um
27:15
I don't really know quite where I
27:17
for sure fit right with the
27:19
SSI or the SSDI like I don't know um and so it'll be
27:23
interesting
27:23
I think you know especially as we have people who maybe are able to apply
27:27
um for disability benefits
27:29
um now that we have the compassionate allowances list
27:32
it'll be interesting
27:33
like within the community to hear
27:34
like from people who say oh yeah like you know I'm in this category
27:37
like age category kind of work work type
27:40
status like I maybe I didn't work very much
27:43
versus somebody who um
27:45
has a longer work history
27:46
and is now no longer able to work due to the nature of their diagnosis
27:49
like I mean I know we have
27:51
we have so many different patients
27:52
so many different demographics of patients
27:54
um but it'll be really interesting to see how
27:56
this plays out um
27:58
just in allowing for more support for patients
28:01
across the board for sure for sure for sure and
28:04
you know aside from the Compassionate Allowances
28:07
designation there are definitely
28:08
a couple of other important things to know about
28:12
federal disability as you're thinking
28:14
about whether it's the right time for you to apply
28:17
um the first is that with SSDI specifically
28:21
there is a five month
28:22
waiting period before they will begin payments
28:27
and you know that sometimes when those payments start
28:31
you're eligible for
28:32
a back payment that sort of encompasses
28:35
that amount of time or if there was previous
28:38
eligibility that they can sort of provide a larger lump
28:41
sum for that first payment um but not always sometimes
28:45
the first payment that you start with after that five months
28:47
is your standard monthly payment and it
28:50
I mean that that whole policy frustrates me in
28:53
when it comes to real people who are living
28:55
their lives and have expenses
28:57
and may not have other benefits through their employer
29:01
or through their family
29:02
to be able to keep up with their bills
29:04
for that amount of time because if you're applying
29:07
you know the Assumption is I'm not able to work and so
29:10
to not have income
29:11
for that five months while you wait is is challenging
29:14
so compassionate allowances does not get
29:16
around that five month waiting
29:18
period if that's something that they determine
29:20
is you know part of your eligibility
29:23
um another important thing to note is that with
29:27
again the Assumption that you're applying
29:29
because you're considering
29:31
or you're realizing that you're not able to work
29:34
you know
29:34
starting now or maybe you haven't been able to work for a while
29:37
that you know most people are getting health insurance
29:40
through their employer
29:41
so if you're applying for disability the uh
29:46
the likelihood that you will have a period of time
29:49
without insurance or that you'll lose your existing
29:50
coverage is pretty high so knowing sort of what
29:55
disability means in terms of
29:56
continuing insurance coverage is important too so with
29:59
SSI in certain states
30:01
SSI provides guaranteed coverage under Medicaid
30:05
so Medicaid
30:06
is the state health insurance for folks who have
30:09
low income and limited resources or who have certain um
30:13
disability diagnoses regardless of income
30:15
but for most people it's tied to your income
30:18
and it is limited
30:20
to the state where you live in terms of coverage
30:22
so this could be a whole other podcast
30:24
conversation about
30:25
Medicaid and for some for folks who have a rare
30:28
cancer where they often have to travel out of state
30:30
for medical care
30:31
what that means and how that limits you
30:34
but if you're someone who falls into the SSI
30:36
category and
30:37
will need to maintain their health insurance
30:40
in some other way
30:42
you may be in a state where you're given
30:43
automatic eligibility for Medicaid um
30:47
but for SSDI there is no initial at least not initially
30:53
um guaranteed medical coverage so with SSDI
30:57
you will have if you're under 65
31:00
or at least I should say under 63
31:03
you'll be given early access to Medicare
31:06
which is the insurance
31:08
for folks who are 65 and older or
31:10
younger than 65 but have a chronic disability
31:14
but that process takes two years
31:17
you have to be receiving SSDI for two years 24 months
31:21
before you qualify for early Medicare
31:24
so that two year period is sometimes a challenge
31:27
for folks to figure out okay I'm not working
31:29
so I don't have insurance through a job
31:31
I my income even on disability may be higher
31:35
than the income limit to qualify me for Medicaid
31:39
so how do I employ myself
31:41
or how do I um insure myself um
31:44
so if you don't have a spouse
31:45
who is able to insure you under their policy um
31:49
for a lot of those folks they are going on to the healthcare
31:52
marketplace to purchase insurance
31:54
and pay monthly premiums directly from
31:57
the um health insurance companies so again
32:00
would be could be a whole other conversation but
32:02
important to know that if you're thinking
32:04
about applying for disability and transitioning
32:06
away from uh you know a a job situation
32:10
that provides you insurance
32:11
that's something else to think about um
32:14
and so yeah I think I think those are the the main
32:19
okay so I want to just make sure
32:20
I'm understanding like to clarify
32:22
kind of some of what you just said
32:24
so Medicare Medicaid that's like the
32:28
federal and or or is it state state funded
32:31
Medicaid is state yeah Medicaid
32:33
for low income is state Medicare is federal
32:35
okay so the federal or state funded
32:38
like medical insurance basically
32:40
like that's what Medicare Medicaid is
32:42
and Medicare Medicaid is
32:43
its own thing it's separate from SSI and SSDI
32:50
in layman's terms
32:52
this looks like you're issued a monthly check yes
32:55
right like and and it's a monthly
32:57
check that is helping to supplement or
33:01
yeah just to supplement your loss of income
33:03
due to the the condition of of your disease
33:06
that's correct and that reminds me of
33:07
another thing important thing to know is that with
33:11
SSDI you are capped at how much you can earn
33:16
additionally
33:17
on top of that disability income so you can
33:20
continue to work to some degree if you're able to while
33:23
receiving SSDI
33:25
um but they're gonna limit
33:27
the amount of money that you can earn on top of that it's roughly
33:30
like 1700 dollars a month you're allowed to earn
33:34
and keep your federal disability benefits so
33:38
and the you know the amount that you're
33:40
receiving monthly from SSDI is also very complicatedly
33:44
dependent on your work history and your previous income
33:48
but even for those who have
33:50
had you sort of a higher income bracket
33:53
um that the maximum amount that you can earn on SSDI is
33:59
is you know is not that much and it's unfortunately
34:03
puts a lot of people in a situation
34:04
where they have to adjust to a much lower income amount
34:08
um
34:09
so yes but
34:11
SSDI and SSI alone are are income programs and they
34:15
have certain connections
34:17
with different eligibility for health insurance but
34:20
alone they are simply income okay
34:24
um okay and then you mentioned
34:25
that kind of one of the the downsides to
34:28
SSDI is that unfortunately
34:29
even though the application process
34:31
may be streamlined and you might get approved faster
34:34
there still is that five month delay
34:36
um that may or may not maybe due to Social Security
34:40
Relay um
34:41
may or may not be backdated to when you did your application
34:45
or potentially when you were um unable to you know
34:48
work or like you know just something some nuanced
34:51
piece of information
34:52
that might be relevant to your specific case um
34:55
it could get back dated and that would be great
34:58
but it could also not be back dated um
35:00
so just kind of some things to keep in mind
35:03
you know about the nuances of the situation
35:05
um if for some reason you're someone who
35:07
say you think that it should have been backdated or you were hoping
35:10
that it was gonna be backdated can you ask
35:12
for that or is it just like once the decision's
35:14
made like that's that's it usually uh
35:19
I think if they if you
35:21
receive communication that states
35:22
hey this is where you're gonna be your first payment
35:24
and it's clear that it's not been back dated
35:27
back dated for a lump sum amount
35:29
you can certain I think you can try to appeal that
35:32
but that may not get you
35:36
very far and I think one of the biggest factors
35:38
that determines
35:39
whether you get that back payment or not is if you were working
35:42
immediately prior to your application process
35:45
so if you let's say took time off from work
35:50
for whatever reason
35:51
and then were diagnosed and decided to apply
35:54
for disability
35:56
that period of time if you weren't working immediately
35:59
prior to the application process
36:01
they're not likely to approve that back payment
36:04
if you were working up until your
36:08
your application date
36:09
then you're more likely to be approved
36:11
for that back payment okay that makes sense um so then
36:15
for like compassionate allowances
36:17
list like this designation has come this year
36:19
there's obviously people who are gonna be
36:22
new to the metastatic
36:23
diagnosis and that that maybe is gonna be more
36:25
applicable to them in that kind of like OK in the future
36:28
like keep keep this in mind
36:30
um but for anyone who's currently
36:32
already metastatic and now we're being made aware
36:35
that we can apply for this um
36:38
is there
36:40
I guess is there is there a way to like
36:42
to know if we should be applying for SSI versus
36:46
SSDI or is it better just to kind of do the application
36:49
under the disability and just let the pieces
36:52
fall where they do based on what they evaluate
36:55
yeah I mean I think a little bit of both options
36:58
right because I think it doesn't
36:59
hurt to create an account on Social Security's website
37:02
and familiarize yourself with what your work history
37:05
is that they pull from you know your
37:08
Social Security number and your you know employment
37:10
records um
37:12
just so you have some sense that that's not necessarily
37:15
gonna tell you exactly which category you fall
37:17
into but it'll give you a little bit of a sense of what you can expect
37:20
from benefits um
37:22
but you do not need to know any of that before you apply
37:25
you can simply go to
37:26
ssa.gov which is Social Security's website
37:29
you'll see a button that says apply for disability
37:31
and that's where you start in either regard okay
37:35
awesome well Molly I really appreciate you joining
37:38
us and just helping
37:39
break this down hopefully help answer some questions
37:41
from you guys listening and
37:43
honestly you know best of luck to everybody
37:45
who chooses to fill out this application and um
37:48
hopefully I mean I
37:50
I have hope that this really can make
37:52
at least some kind of a difference
37:53
for patients especially ones who are
37:55
in a more challenging situation
37:57
um where you are you know your your limitations
38:00
to work are becoming increasingly more and more
38:04
notable based on the condition of your disease so
38:07
um so Molly thank you again for joining
38:08
us and helping to explain all of this
38:11
thank you thanks for having me
38:13
alright you guys well if you have any questions
38:15
please make sure to send those to Contact@ACureInSight.org
38:18
if we can't answer the questions
38:20
we will uh
38:21
help try to point you in the direction of someone
38:23
you know in your local area who can um
38:26
and for any of you guys who are listening
38:28
and wanna grab some of those links
38:30
make sure you head down to the description
38:31
usually that's gonna be like below the podcast
38:33
or below the YouTube video um
38:35
you can grab the link with
38:36
you know the article about compassionate allowances
38:39
and um
38:40
anyone who has you know further information or if you guys have experience
38:43
in going through this application
38:44
process like definitely reach out to us and
38:46
let us know how this has gone any kind of
38:48
maybe tips or tricks that you're learning along the way
38:50
um that might be helpful to other patients like you so
38:53
with that we will talk to you guys next time and um
38:56
thanks for listening