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You're disabled, you're damaged goods, they just push you through the system.
disabled people are just treated as free, easy resources... so, yes, I work! I work hard,
all the time! But I don't get any remuneration for it.
my wheelchair was broken ...and I'm supposed to feel bad because I didn't dive through 74
hoops to [get down there] to find out this information.
I did go to MA Rehab. And they told me I was too educated, and they couldn't help me.
We're ...pushed to say that we're grateful to this, and grateful to that... but basic needs,
whether it's food or shelter or some financial support ... should be the norm for every person
who lives on the earth.
Gender: Male – 3
Female – 5
Age: 41-49 – 3
50- 59- 5
Annual Income: $0 –
$5,000-9,999 – 2
$10,000-14,999 – 4
$20,000-24,999 – 1
$30,000-39,999 – 0
N/A -1
Disabled: 8
# of Children: 0
SUMMARY
This focus group was composed of 8 individuals with very-low and low incomes, lifelong
disabilities, and between the ages of 41 – 57. Group participants developed a warm comraderie
early on, through sharing of common experiences. Although the shared conditions include a
lack of socially integrated resources, a lack of qualified, competent service providers, and a lack
of access to culturally relevant assets-development programs, also shared is a vigorous,
knowledgeable, full-time commitment towards raising the quality of life for all individuals with
disabilities.
Other demographics: Six participants live in subsidized housing in the greater Boston metro
area, six had worked full time for at least ten years, five had greater than a high school
education, four are wheelchair users, three were born with congenital impairments, two are
visually impaired.
A slightly edited word for word transcript follows (personal or otherwise identifying information
was deleted from transcript).
ASSET DEVELOPMENT
FOCUS GROUP, FEBRUARY 27, 2009, 4 – 5:50 pm
Boston, MA 02115
ALL-DISABILITIES GROUP
8 Participants from Cambridge, Somerville and Boston, MA
1) (a) What does financial or economic security mean to you---what makes you feel financially
stable ?
What makes me financially secure is, when I come home at night, into my apartment,
that I know it's mine- no one can take it away from me- if I pay my rent. Once I paid my rent, I
feel really secure. And, if for some reason, if I'm too late for my rent, and I get a notice from my
management company, it's a little upsetting.
Well, one recent experience I had was, I'm needing some dental work. I couldn't really
afford it myself, because I don't really have a savings account, but my brother was able to help
me with that. So, I would like to be able to have more savings so if a dental emergency
happens, I could afford it in the future. Because it just, it did make me more secure that he was
able to pay for that. Those dental procedures aren't cheap. So. And this was- I have Mass
Health, which does pay for a lot more dentistry than it used to, but it doesn't pay for dentistry on
anything for the back piece. So it was a back tooth that needed a root canal and that sort of
stuff. And those are, like expensive! They don't pay for back teeth.
Just the front teeth.
Front teeth are exclusive! (laughter)
Only the essentials.
So, I guess that would affect a lot of people who have Mass Health. That, they can't get a
root canal done, or any such procedures on anything but front teeth, and they would have to get
the tooth extracted. Mass Health does pay for extractions, even on the back.
I'll go. Well, I guess I feel financially secure to the extent that, I get a monthly check from
the government, for SSDI, because, I was in the workforce and became disabled. So, I get a
check every month, and, you know, that's guaranteed. So, I guess I'm better off than people
who are out in the workforce, and going around saying how grateful, how happy they are to
have any job at all. So, I guess that's what I'd say.
I guess, well, a couple of things, having a roof over my head. That's secure. Paying the
rent, that's a monthly check, and also, I guess, I have, a, so-called transportation, that I can ride
in. I always call it “my Mercedes.” That I can, I really don't have to depend on anybody for my
transportation. On the other hand, if I have to go way out somewhere, take the RIDE
transportation, it doesn't work so well. So, I think those three things, four things, make me feel
secure.
I still have to think about it.
Well, for myself, I'm secure in the sense that, I do live in the Elderly/Disabled housing. I
thank God that it's only 30% of your income that they take from you. I suppose these other
places go for like 1600 dollars just for a one or two bedroom apartment in Somerville and
Cambridge. So, in that sense I consider myself lucky, in a way, that I am in a nicer part of town,
and I'm only dealing with 30% of it. Like others have said, you know, having a roof over your
head, being accessible to 3 different MBTA bus routes, the Red Line nearby, it makes me feel
good that I can get around myself, and not have to depend on others to get where I need to go.
You know, I'm visually impaired, and also have a learning disability as well, a frontal lobe
processing issue. There are times, I get down, but then there are other times I think that there
are a lot of people a lot worse off than I am. In certain other ways I feel good that I'm not as bad
off as others may have it.
But I'd feel much better about myself- I mean, I do have a part time job with...<snip>
and I do a little work for...<snip>. And I thank god I have them, because other people don't
have any jobs at all. So I guess that you would call that financial security. But it would just be
nice if the government was just a bit more flexible, in being more supportive, as opposed to, the
little that you make, they are always taking it away from you, it doesn't feel like it's a positive
like, “Gee you have a job, and we'll support you to keep that, and make sure you get on your
two feet.” Instead it's that, well, now that you have a job, and now you pay this. It would be
better if I could feel financially sound, and think about even getting a better job.
I guess I should feel secure, because I have a place to live, and I have a job, but I think,
having a job, you never know whether the job is gonna last. And, even if you're not technically
a “worrier,” it's reasonable to assume that things change. And so, I hope I continue to have my
job, and if I don't it's worrisome to think about finding something else, and finding something
that's accessible, finding something that makes life affordable. I'm OK right this minute, but I
can't speak for the next minute.
Well, I'm also glad to have an accessible apartment that I can afford, with paying 30% of
my income towards the rents. It's in a nice part of town and it's in mixed income housing, so
it's accessible in a community where there are a lot of things. So, I'm grateful for that. And I'm
grateful that I get a check every month. And as soon as I say I'm grateful, I also see a lot of
challenges. I feel like there's not much incentive to make money, which I would like to do. But
I would like to do it on my own terms. A major problem is fatigue, and.
Can you say a little more about why you have fatigue?
I have multiple sclerosis, and I can work, but it'd have to be according to how I can do it.
I can't work a 40-hour work week, it's just not in the cards. But I feel like, when you work, and
you go to an agency, they take a lot of what you make, and there's very little incentive to shell
out money to these agencies. And I feel that, I have a real problem with MA Rehab. They are
supposed to be in the business of Vocational employment, but, or, vocational training, but you
have to fit in a very narrow, you have to fit into a cookie cutter mold, and if you can't work full
time, then they start to get really aggravated about that. You know, you ask, “well then why did
you take me on as a client?” but I am grateful for, to be able to get, I mean, some people don't
have health insurance! And when they're working full time. So, I've got Mass Health, and it's a
little bit of an inconvenience, but I do have that. And there are certain programs that help. Such
as the food stamp program. Though that's even getting more discriminating and more restrictive,
and I think with the current economic situation, they've just ended- I've been seeing my Food
Stamps cut, cut, cut. So it's hard, that you can keep something, but it's often just not enough.
Yeah. You can't have a car if you're low income. The insurance, there are other factors
are just hard for someone on low income.
So would you say, across the board, that low income people in general has that same
barrier to having an automobile? Or do you think there's something extra with people with
disabilities?
Well, with people with disabilities, our income is just that much lower.
Well, information is a real barrier. To let through this maze, there's a benefits Specialist at
MA Rehab,... make an appointment and he'll go through the maze of all the benefits. And you
can also go to the agency that was awarded the contract, the Community for Inclusion at UMass
Medical School. It's them plus MRC, it used to be the Resource Partnership, they'll tell you all
about the benefits that you can get and can't get.
The Community for Inclusion group.
Now that I think about it, I moved out to CA for a few months last year, I was thinking of
moving out there permanently, I was offered a job teaching a class at University ... I think the
class was going to pay maybe $7,000. And I couldn't figure out how I was going to take this
job, because I could not get housing out there that would be subsidized that quickly. So I would
have to pay market rent, while getting this small salary. Meanwhile, the $7,000- 30% of that
would go to pay my rent in Boston because I did not feel secure enough to let that apartment go.
I was just staying in a little bungalow in back of someone's house for a couple of months. The
only apartment that was available through B... was a studio that I would not be able to access
the bathroom at all. And I did not think that I could really live without being able to bathe! So,
it was this awful situation that, I would have loved to go out there and teach the class, but, the
other thing was that, it was an Adjunct position, it wasn't guaranteed, so if I were even to move
out there, and I didn't get the job or it didn't continue,... and once you lose an apartment that's
subsidized, it's incredibly difficult to get another one. So, it was one of these situations where
the only thing I could think of was to pay incredibly high market rent, and there I would be
losing money while taking the job. So I would end up just borrowing money from my family or
something, and running through money and...
Another thing is, in the teaching profession, there's no slack for missing time. You know,
if you're a professor or teacher, you have to be there with your body and there's just no slack
around that at all. And being severely disabled, I sometimes cannot make it. And that always
felt very difficult to overcome, too. And, all the question marks and difficulties were too much
for me to handle and there was no way I could get out there to get through it. So, I had to came
back.
Anything to add to that for now?
I'd like to add something. The MA Commission for the Blind itself actually makes it
difficult because some people say, “oh, they're wonderful,” but if you only knew the
qualifications of some of these workers- they're really not qualified to help you with things, they
don't follow through. I know a guy that works in a concession stand, and just getting simply
Brailled things to be able to work in a shop, to get a money reader, to get a large print calculator,
to get his shop expanded somewhat so he has room to move around and move his things, he's
been doing this work for years and getting nothing but the run around from the MA Commission
counselor. And that's a problem with me too, if I wanted to get a job and be supported, how do
I know if I'm going to get support? Probably not, because he and I have the same counselor. If
you get a good counselor, you're all set, but unfortunately, my friend and I have a very bad
counselor. He doesn't do his job and that's very unfortunate...
I find the same thing with MA rehab. Like I said before, they're used to dealing with a
certain type of client. I didn't fit their cookie cutter mold. I became disabled fairly young, but
I'd already started my college education. But then, when I went back to school, I couldn't go
back full time, and I feel like, I had one very understanding counselor, who was really rooting
for me. But everyone after her was always trying to close my case. And it was horrible.
Because here I am, I'm trying to get to school and I had to do it a certain way, and I was getting
great grades, but I was getting a lot of trouble from the very people who were supposed to be
supporting me. And that's why I think the whole Vocational Rehab system really needs to be
overhauled, and looked at anew, because I had counselors that were treating me as though I
weren't motivated, as if I had all these problems. And really, my basic problem was them not
encouraging me, they were not being flexible enough.
Low expectations of you, basically.
Yep! You're disabled, you're damaged goods, they just push you through the system.
I, too, had a big roadblock at MRC. My Voc. Rehab counselor just stopped with me, she
did nothing for me. She did very little, it was basically up to me to figure it out, and I couldn't
figure out anything then! I had just had a life-changing event happen, and I was supposed to-
What was that event?
I had a stroke in 2002. And, I did figure out what I was supposed to do, but no thanks to
her.
About low expectations, in particular, and this isn't about my present period, because I
was disabled for a while, I became ill with a psychological disorder. I was probably ill during
college, but I managed to get a degree.
3) Are you familiar with any home-ownership programs that realistically apply to your
situation?
(laughter)
Uh, no.
no.
that's a no.
I am, but keeping me from entering into that is fear. Low income development- there
have been a number of them that have been addressed to me, but I've ignored going the route
because of fear that I'd be able to follow through.
no.
nope. I agree with what … saying, it would have to be especially tailored to people with
disabilities, and there's just nothing out there. There are programs for low-income, but not
disabled low income, who are needing accommodations and accessibility.
Yeah, no.
no. I'd like to own a house someday, but it's just not possible. Like we said, you can
only have $2,000 cash, and how would we pay our mortgages? Sometimes we can't even pay
our rent, how could we pay a mortgage? And then there are all the other expenses.
We were talking for a while to go co-op, and I've heard of home ownership for people
with a certain range of incomes, but my income is way lower than those qualifying incomes.
So, I would look at them, but just get discouraged. The income costs are far higher than I make.
It's sort of a surprising question because, there are so many of these low income
programs to own a house, and they sound very good, but then, talk to the people who are
helping the people, they are maybe not giving all the information we need to know. So D's
comment about fear, even if you appropriately go through the process for low-income, not about
disability, just low income, then you never know, because you have to look to the left and look
to the right and you see people losing their homes all the time.
Absolutely.
Well... I work alot! But it's all for free. I go to meetings at the AAB, and offer my
expertise, and all the other people in the room are earning lots of money. I go to City Hall and I
offer my expertise, and everyone in the room is earning lots of money. And I do lots of site visits
and I have all these engineers that I offer my expertise to, and they're getting lots of money and
I'm not getting a penny...you know, disabled people are just treated as free, easy resources to be
patted on the head and patronized, and so, I work! I work hard, all the time! But I don't get any
remuneration for it!
What would say is the average number of hours that you put in every week?
I don't even know, really, but let's say, depending on disability campaign season, because
you know, this is a seasonal enterprise! (laughter all around) But, somewhere between 10 and
20.
Alright, I like what H was saying about doing a lot of freebie stuff. And I know you, E,
you do a lot of free stuff for the City and haven't got any thanks or credit or anything
You know, even just a cup of coffee sometimes- forget the credit! (laughter)
I try to help the city and I offer my expertise to the T on how to design better bus stops,
and I even shovel out the bus stops, but they really don't care, so you just do it, because it has to
be done.
Above and beyond the part time job I do, I work a lot for no money. One, I am on the …
Commission... Beyond that, I offer my knowledge, helping with AAB, speaking to different
groups, they're complaining to state agencies, filing Title II grievances for decent sidewalks,
Somerville...
yeah I do freebies, and occasionally I do get paid for it...
yeah, I fill out things for others, and I'm on the Board of my … and I'm on a Health Care
for All quality consumer care council... and you know, we do, as a group, we do a lot, without
remuneration, and I'm also on the Disability access committee at my Food Coop, and we do a
lot there, we've got , we advise our liaison, and we've got a whole brochure done in Braille!
Wow!
So we do things like that and that's very important and very necessary.
What I don't understand is, if they, if agencies call you to speak for them why can't they
give you a stipend? I don't understand that!
Why indeed! (laughter)
Maybe they don't want to admit that you're working for them.
Let's say an agency calls J and asks him to speak- the first question I'd ask is, “are you
paying him?”
Well, one example, with access law, there are no enforcement provisions put into the
ADA access guidelines. And with the Architectural Barriers Act, there's no enforcement there,
either, it's just voluntary. So right there, it shows the level of disrespect. If we want things to be
accessible, we have to put it forth, even though it helps everyone, we have to spend our free
time working to make it happen.
You're supposed to file complaints, so, OK, we filed complaints, and filed complaints,
and changed city policy. So, I have a smart level, and I go out on my own time, because my
helpers [personal care assistants] are only paid for what's called ”medical minutes” so I have to
squeeze the amount of time I use for cooking or shopping or cleaning my apartment to take
someone out and tell them how to put the level on the sidewalk to find out what the slope of the
curb cut is, and we find out that it's usually a percent that will cause someone to kill themselves,
or fall over. So then I fill out a form, and I post pictures and a narrative, and all the dates, and
I've got a portable camera, and I'm downloading information from the camera and emailing it,
and then I go attend the hearing when the entity doesn't respond to the complaint, and I write
letters to the AAB on the issues... and there are countless meetings...
and there are these institutionalized formats where they self-fund each other in order to
put out their own propaganda about opposing our civil rights!
So, it's not that grassroots movements should necessarily be always funded, but there's
the problem that the agencies that are supposed to be working in our interests, sometimes they
are, but often they don't.
Hmm.
Yeah.
Mmm
They're not filing complaints!
(f) So, would you like to go back to school to learn a new skill to get a better job?
Well, I find that I've had to do this on my own. I've just gotten so frustrated with MRC.
So, I've been learning grant writing and getting involved in volunteer fundraising for a
nonprofit, and that's what I do. And again, that's free labor, but it's helping me gain
some skills, and it's helping people at the agency gain some funds, and I really want to
learn grant writing.
(g) Are you familiar with any financial assistance programs that could help you go back to
school or get training?
Well, I on my own applied for a certain grant, and for a time I was able to go back to
school on that, but at some point, my college education, they had these new guidelines where
you couldn't go to school part time and get certain grants- you had to take more than 2 classes
to qualify for certain grants.
No, they weren't specific to disabilities. I went to college, and with very little assistance
from MA rehab. So, after a while, the money just wasn't there, and I could only go to school
part time.
Well. There is something called a Plan to achieve self-support, and it's a set-aside, either
from a job you have, or from SSDI, so that, in determining your eligibility they don't “see” it, so
you can have money to live in and that money goes to a special fund to finance education, or a
van, even. So those do exist, and what I've been told by the people from Social Security, is that,
they never work. Just for whatever reason. And I have used 2 of them, and I'm a little
embarrassed to say this, but it didn't lead to becoming a ..., the last PASS plan that I had, and I'm
not sure I could untangle all the exact reasons, but the example of getting out to B... is part of it.
5 (a) Did you or someone you know ever have a problem with losing public benefits (food
stamps, child care, housing assistance, etc.) because you started earning more money or
having money in a savings account or another reason?
Well, when I was working some where, I lost SSI and I went over a few dollars, and then I
had to pay them back, because there was an overpayment...
and when that happened, did that siphon off your money that you were using to pay for food,
for rent...?
Back them well I got some food stamps, I managed to keep a roof over my head. It didn't
interrupt my rent. I learned.
I was afraid.
I have, in the past, lost Food Stamps when I was eligible, and it was because of
miscommunication between two agencies. But I went to a hearing and was told that I
would get them back- I never got them back, but I never fought that. Now, I'm not
eligible anyway.
I also got misinformation when I first inquired about getting a part time job, by SSA.
I was getting food stamps through the State, and they gave me some wrong information, and
then lost my applications, and then I lost my benefits, and then they were reinstated by a
hearing.
In Davis Square, the SSA building, it's not even accessible to the visually impaired!
I think the people are in their own little space, and your quality of life is really depending on
their listening to you. The person at Food Stamps, I kept trying to explain it to her and
she kept saying, “Well, we're not the Boston Housing Authority,” and I said, I'm trying to
tell you that because of them, I couldn't show you out of pocket medical expenses! So
it's just like, they get into this bureaucratic mode, and just don't listen, or they keep
repeating stuff, and it's not effective.
When I was trying to see if I could move out to CA, I was talking with someone who knew a
lot about housing issues and she said, did you use up your trail work period? So I needed
to find out if I had used up my trial work period from some Social Security thing, and I
called them up, and they said, “no, you have to come in to find that out.” And I don't
know what- maybe my wheelchair was broken, or, I just couldn't really see getting down
there, and it was just one more impediment to trying to figure this out, and I never got
there to get this done. And, the end result is, I'm supposed to feel bad because I didn't
dive through 74 hoops to find out this information.
Yea, yeah, yeah...
And another thing is, a lot of people here have a lot of experience in a lot of different
areas. But, I think that, for people who are newly disabled, or just reaching age where they have
to get involved with all these agencies, I think there's some kind of romantic notion that these
are human service agencies, that they're going to help us! But, you know, but they are, not.
They are bureaucracies, as you say, they are people who have jobs, and just like if you go to the
supermarket, there's somebody who's not so friendly, and then there's somebody who's
wonderful, and I don't think that you can ever expect that in any kind of agency that the people
are going to be nicer and more helpful, than the people in the supermarket! I mean, it's a job!
That's sad, but I think it's realistic to assume that any kind of encounter you have, for any kind of
project you're working on, you can't make an assumption that the agency worker or the housing
persons, or the human services person or the PCA person, whoever it may be, is necessarily
gonna show compassion, or understanding, or that... the wheelchair's always broken, or that
you couldn't get your paper work sent by another agency- all those kinds of very common things
that we all know about here, people who are new to the experience are going to be quite
shocked.
When you talk about bureaucratic agencies in general, you're talking about a number of
people that are really not qualified to deal with disabilities in general. Because the staffing at
these agencies is political, they get it because their uncles worked there, or something, it's
nepotism, it's all political
laughter
yeah, yeah
So, that makes it all the more harder, it makes it quite unpleasant, because the people
who are serving you, they don't necessarily have a degree, or any understanding about the
people they're serving. There's got to be a better process for hiring State workers.
Maybe they should hire people with qualifications! The political gene pool... I shouldn't
say that, but if it's that kind of association, they're just not qualified or motivated to deal with
people with various disabilities
or who have the know-how...
So one of the ideas that's coming out here, is that people should be more qualified, in general,
than who work at State and Federal agencies?!
Yeah, that's it, it shouldn't be so complicated!
Yeah, like we know a lot about advocacy, and perhaps some of us are more qualified...
yeah, and we know a lot about food too!
7) How many are familiar with the Special Needs Trust Program?
I became a little familiar... a little...
5
(a) Are you familiar with the free tax preparation centers in your area? Can you use them?
7
Ooooh! No but I would like to be.
There's a program at the Boston Public Library and they help you fill out your income tax.
So I fall under the cap. Guidelines for them to help me...
(b) Are you familiar with the Earned Income Tax Credit? If yes, have you received the credit in
the past?
5 yes, 5 received it.
(c) Are you familiar with the Elderly and Disabled Tax Credit?
4 yes
9) Have you ever gotten a loan from a tax preparer when you filed your taxes?
8 – no!
That's a scam- don't do it!
10) Do you have any other loans or credit that you’re paying? (this can be credit at a local
grocery store or other credit—not necessarily a credit card)
Yes- 5 have credit cards.
a) If yes, do you know what the interest rate is on the loan or credit card?
Yep.
b) Did you understand the interest rates on the loan or credit card when you signed for it?
Yes.
c) Are you able to make the payments? If not, why not?
Not right now... it's a big story...
d) Is your debt a problem for you?
Oh, yeah! Yes- 4
no- 4
e) If you could get help with managing your money better, what would that be?
Getting more money! (3)
I don't want help. (5)
f) Do you think it would help if you could talk to other people about managing your debt and
get some tools to help you with that?
Well, I don't know if I would trust them. I wouldn't know, are they really a non profit? I
get the calls all the time by phone, and I just ignore them.
2- That might be OK.
5- no answer.
I feel like all of us have lots to offer, but the way things are set up right now, we can't
be used, and they should change that.
It seems like we all have to jump through hoops to show we have a lot to offer.
Why do we have to keep jumping through hoops!
About affordable housing, and income ranges, I realized that none of those affordable
housing ranges were in my range. We're even below the low income to even
purchase anything like a house.
It seems that, why is it harder for someone who's poor to get someone's attention? I
don't know what else to say!
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