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Assets Development Focus Group People with Disabilities Boston, MA 2/09


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Eight individuals gathered in February, 2009 to discuss their experiences using Federal and State programs that are supposed to
serve people with disabilities. The group discussed incentives and barriers to developing assets, and agreed on a number of policy and procedures that act as barriers and disincentives for Americans with
disabilities circa 2009.

Recommendations were presented to the State of Massachusetts Assets Development Commission. This is a summary plus a verbal transcript.

Published in: News & Politics, Career, Travel
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Assets Development Focus Group People with Disabilities Boston, MA 2/09

  1. 1. COMMUNITY ACCESS PROJECT OF SOMERVILLE Focus Group Date and Time: FEBRUARY 27, 2009, 4 – 5:50 pm Focus Group Location: Boston, MA 02115 Number of Participants: 8 Program Affiliation: Senior & Disabilities Advocacy Organization Facilitator Demographics: 1 Caucasian female, 1 Caucasian male Participants were 8 Disability Rights advocates from Boston, Cambridge, Somerville You're disabled, you're damaged goods, they just push you through the system. Your quality of life really depends on their listening to you... 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. There are even no affordable accessible apartments. Especially these days. Gender: Male – 3 Female – 5 Age: 41-49 – 3 50- 59- 5 Ethnicity: African American – 1 Other – 6 N/A – 1 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
  2. 2. 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. Group participants held agreements about: ! the lack of adequate, competent MA Vocational job-training resources; ! the low expectations imposed upon individuals with disabilities; ! the lack of qualified service personnel in state agencies serving individuals with disabilities; ! work disincentives due to the low financial triggers that cut people out of means-tested services before they are able to “get on their feet;” ! lack of clear, coherent information provided to clients by Federal and State assets and/or needs-based programs; ! governmental and other agencies' exploitation of participant's experiential knowledges (their expertise is often requested and utilized, but rarely credited or compensated); ! the need for coordination between needs-based programs, ! health vulnerabilities due to limitations of Mass Health and other means-tested services, ! need for scheduling accommodations in employment practices, ! vulnerabilities caused by lack of public accommodations and accessibility ! the need for frontline social services personnel to respond in (at least) a professional manner. 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).
  3. 3. 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 FOCUS GROUP TRANSCRIPT 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
  4. 4. 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. Thank you, that's a lot of information, right there.
  5. 5. 2. Have you experienced any barriers to increasing your assets or your financial/economic stability? Assets are things like a savings account, a home, a business, a car, stocks & bonds or retirement savings. Well one barrier is, I'm not allowed to have more than $2,000 in cash, at any one time, because of Mass health restriction, I'm not sure. So, I'm not allowed to have any more than $2,000, and I'm on SSDI and I can earn up to $900 a month and keep that money, so, if I get $800 in SSDI and I get- I earn $900, then my total income is $1700- but if I earn $901 dollars, my monthly income is $901 dollars! So, that's a serious risk barrier. But other barriers are just kind of structural, like, the way society has work structured, it's either full time, or, it's hard to be advancing in a career other than full time, or our mobility equipment is so busted up and unreliable, I know one person who had to stop their monitoring T monitoring (compliance with accessibility) job because the wheelchair kept breaking down! She couldn't get to her job. And I'm sure that people have lots of other things, but or even just not having enough help from Personal Care Assistants. Or, being able to find people who are skilled enough to help me, you know, if someone is really sweet and nice, but not especially literate, that person is not going to really help me be filing and mailing things, you know, it can be challenging to work with someone who can't address an envelope, as nice as they are. I too, find limitations. I myself am on SSDI , I have MassHealth and Medicare, and I can't have assets greater than $2,000. I do have a part time job above and beyond my SSDI and I'm lucky for it, but I actually have that part time, but there's a rule, concerning persons with disabilities that live in State-funded public housing, which, if you're under 62, when they determine your rent, they'll determine the rent within the earnings made before 7500 dollars. In that, if you're over 62, they don't count that first $7,500. a lot of people find that as a barrier to employment- why go to work? Because if it's just a menial part time job- which, a person with a disability shouldn't be limited to, but if they're going to have their rent go up because of it. I feel the rule is discriminatory if it allows elders, 62 and older, who live in State-subsidized housing to earn that- it should be everyone. So, if you earned $5,000, what happens to that money? Anything you earn will be determined as part of your rent. Oh, so 30% would go to pay rent. Any money you get, 30% of that is your rent. But if you live in State-public housing, they don't count your SSDI before that $7500. They count wages above and beyond that. It excludes a number of persons with disabilities who are younger from getting a part time job. I worked before I became disabled. I started working as a teenager and I worked on a farm, and I worked at a cemetery, and I had lots of people who worked under me, and I was in the workforce after college and even during college, but I became disabled, and SSDI is a form of insurance for people who are in the workforce and become disabled. So that's, and I've also held a job for a while at an independent living center and a self-help center, and so that's where my SSDi is determined from. It's very low, if I'd worked for many years, it would be a lot higher. I worked from when I was 19 until I was 50! That's what I collect SSDI instead of SSI. But I want to add the law number is 760.6 CMR [for that $7500 rule for under-62 year olds] which governs the State housing and community development. I'm thinking, as people are talking, and talking about being grateful for housing and income of any sort. I think that's kind of sad. I think that those are basic rights. I think poverty is a major cause of ill health. I'm not talking about being disabled, I'm talking about in addition,
  6. 6. ill health. I just think that we're very pushed to say that we're grateful to this, and grateful to that, and there ARE things to be grateful for, but basic needs, whether it's food or shelter or some financial support are not things to be grateful for, they should be the norm for every person who lives on the earth. I think if you talk about learning disabilities, just because we have learning disabilities, it doesn't mean that we're retarded. But it doesn't seem that the workforce is able to include us. Usually it seems that if you want to get a good paying job you need to be good in mathematics and physics and things like that. I can't do that, and that's where some roadblocks come in for me, getting those good paying jobs. And then, the visual impairments are a roadblock for me. Because you have to drive a car for all these good jobs. When I applied to be a parking control officer in somerville, I can get up close and see the license numbers fine, I just need to get close to them, and they are a lot bigger than 24 font. So I went for the interview and I never got a call back, and they picked someone else. Did they say anything to you? Well, that I had to drive a car! But you and I know that what PCOs do is walk on the streets! You could have got dropped off by someone else. Exactly! And that's why I felt discriminated against, for that job, because they wouldn't consider any other way to do it. And here, I come from a city where, from the age of 5 the school psychologist said I was retarded until the age of 12, when finally the low vision clinic at Children's Hospital finally evaluated me, and they said, “Mrs...., your son's not retarded, he's got some learning disabilities and some visual disabilities seeing the board.” How come you finally got the evaluation? Basically, my mother had to fight for me, she fought for six years to get me out of public school, and I went to perkins and was able to graduate on time. If my mother didn't advocate for me full time, who knows where I'd be? Maybe I'd be in prison, homeless, who knows? Because I had such a low self esteem, I'd probably be robbing stores or something. Luckily, I had a mother advocating for me, and so I'm lucky and I'm here now. So the discouragement would have caused you to go down a bad path? Right, exactly. I was just thinking that, not only are there limits placed on the amount of monetary assets we can have, but it's not even necessarily clear. I had thought it was $2,000 for MassHealth and $5,000 for Section 8, but when you fill out the yearly review for MassHealth, it doesn't actually ask for your bank statement, and so you're wondering, “is it $2,000, or not $2,000?” Is it $5,000 for Section 8? Has it gone up this year?” It's very hard to find out even what the rules are, and I don't want to save only to find out, “oops, now I'm being kicked out of Section 8,” so, you practically have to go see a lawyer to be able to figure out what you can put in the bank! And it drives me to think about alternative strategies, like sending money to my brother, and asking him to hold on to whatever small amount that is. That seems like a safer alternative than worrying about whether there would be a problem to limit my ability to keep housing. And what happens when you ask the Section 8 advisors? I haven't actually asked any person. Well, it's like, you feel, it's hard to say how you feel, but if it's not information that's not immediately publicly available, then maybe you're not
  7. 7. supposed to know! And then, maybe with Mass Health... Actually with the Section 8, I know who I would call to ask- there's a specific person who I've been dealing with at the HA... and so I know who to call, so I could get over and ask. But with Mass Health, it's sort of like this bureaucracy, you don't even know who to call and, in fact, actually, on my last review, I have now a trust that my aunt established, a very little amount . More of a hassle than anything else! So in my Mass Health review, they sent me two forms. They had made a determination that I was now going to pay $26 a month, and the other saying they needed more information to make a determination. So, I thought they just maybe didn't see the pay stubs from the quarterly checks, so I sent them some more and they said, OK, now you can have Mass Health again, but they made a much higher determination. And, I don't know whether that persons thought that was a monthly amount, rather than a quarterly amount, and how could I even find out whether that mistake was made or not? I don't even know. There's no person who's responsible, so that I could call up that person and say, “Oh, did you realize this was quarterly and not monthly?” I think she probably thought it was monthly, because they always say monthly. So if there's a name on there... But there's no name, and it's like anonymous as to who made the determination... But then when you call, they always ask for your SS#, or other reference numbers. Like, with Food Stamps, you fill out an application for Food Stamps and there's a name of a person you can call. With Mass Health, it's not like that. They have a phone hotline number, where you get a different person each time you call. Yeah. So, one barrier that we're talking about is that, information is not readily available. But also, how could you buy a car, if the maximum amount of cash you can have is $2,000? laughter all around. 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.
  8. 8. 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
  9. 9. 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. And where did you go? MIT. And so the fact that I did manage to get through MIT actually opened some doors for me. During my first period of disability, I went the standard route, I went to MRC at... and they had a specific program for people with psychiatric disabilities to go back to work. And I had, after the rehab program, I had a supported job working in the pharmacy as a filing clerk for a year. And I had worked as, like a research scientist in computers, and in one of the most competitive companies ever, and then- but I was so determined at that point to go back to work, so even a filing clerk was better than nothing! And eventually, I was laid off, and my new boss, the boss changed, and the new boss, well I don't know what she was doing to me, but she was nice enough to tell me that I really belonged back in computers, so at that point I worked and worked and worked and I had a pack of cover letters about yay big, and there were so many places that I applied to, and so many bad reactions, but I was really determined, and eventually I got a job, and it wasn't really the greatest job, but I got a job in the computer field, and went forward and was stable for many years, and recently I've had more problems and I'm on disability again. And I haven't gone through the Rehab program, in part, because I don't think that I want to work as a filing clerk again for a year. I think that the expectations are really low, and if you come in saying, “I want a job as a research scientist,” (laughter) they're just- it seems too snobby, you know? Yet, if I were to get a job as a filing clerk, I don't know exactly how much money I would be making, but I don't think I would be getting even as much as I get from disability right now! So, finally if you do get work... So, but there are these low expectations that happen. And, when I was younger I was willing to put up with that just for the self esteem of the job, and now that I'm older, I'm like a little bit more choosy, and I think I'd rather work, if I can, I'd rather, I'm hoping, I'm sort of doing my own research, and at first I hoped to become a medical researcher, and that was a little too ambitious and didn't work out, but now I might be able to do some work involving computers. And I'm hoping to at least do it on a volunteer basis, because even just a part time job would pay me just enough to get me off Section 8 and lots of these benefit programs. So if I have to go back on disability, I would be able to go back- my disability is well documented- but I wouldn't have Section 8. How would I pay for rent? You don't just hop right back on Section 8. Once you lose your subsidized apartment, that's that. Yeah... There are even no affordable accessible apartments. Especially these days, they're not easy to come by. Yeah. Yeah, Yeah. 3) Are you familiar with any home-ownership programs that realistically apply to your situation? (laughter)
  10. 10. 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. 4) (a) How many of you are currently working? 5 (b) How many work full time? 1 How many occasionally work part time? 4 permanent part time? 2 (d) OK. How many would like to be working? 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 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
  11. 11. 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?” So why can't you ask for the pay? 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
  12. 12. are, but often they don't. Hmm. Yeah. Mmm They're not filing complaints! Sounds like a full time job to me. I have something hot off the press! Here's an AAB complaint that the town denied, even though all the pictures and measurements are there... (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. So, you're writing their grants for free? Well, I'm helping them out with parts of the grant, and with fundraising. Again, like with all the other things that we do, this work we do is very valuable, but it's not compensated. So, I'm a volunteer counselor at a neighboring hospital. And people there will say, “Oh, you counselors, your work is so helpful and valuable,” but, are we compensated? No! We're not even getting a good time to do our work in, I'll have to do most of the research on my own. MA Rehab doesn't support this kind of stuff. No, they want you to work full time, but I don't find that they really support our ability to work how we realistically can. Yeah, I was just going to say, “No, I don't want to go back to school.” I was in school for a very long time, and there was a point at which I was unemployed and I did go to MA Rehab. And they told me I was too educated, and they couldn't help me. So, I think if you want to learn things, just for the sake of the knowledge, that's a wonderful, it's a kind of, certainly isn't connected to money. I mean, there are certain things that people need to know in order to be able to work, But, to assume that if you get this or that degree, you will necessarily get a job that pays well, is, or even acceptably, because that's a fantasy, because there's just basic discrimination in terms of job hiring practices. Right. Yeah... They see the disability and not the person. (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
  13. 13. 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! How is is not accessible? You're expected to take a number, and you need to sit and wait for your number to be called, so they expect you to use a touch screen machine that's not even 24 font and above, so you can't even see what your number is after you take it out of the machine. Then, I found out that the number is actually called digitally on the screen, but it's not connected to an electronic voice, so you have no idea when your number is called. Yeah, I don't have a visual impairment, but I find that the Davis Square office is just hard to get around. There's not much room to maneuver in my chair At the one in Waltham, it would be very crowded for someone in a chair, but the elevator isn't even big enough, and for the number calling system, even sighted people don't know when it's called. So you're always going up to the window to find out if your number is called and they chase you away, saying you have to take a number before you go up to the window!
  14. 14. So how do you feel you're treated at the SSA and other such offices? I, too, encountered difficulties at the SSA in Davis Square, so for that reason, I do all my business over the phone. It's like pulling teeth out of a pit bull to do business at the office. But, in Davis Square, it's actually horrible. yes (from 3 participants). I actually changed and go downtown rather than there, and again, that's pretty awful. In terms of the assistance of the people, usually now, I just need to get a printout of my monthly income for Section 8. But at first, when I was first applying, I was so nervous and whatever, but I had my DMH case manager come with me to make sure that I filled out the forms right. Sometimes the Social Security is like that, you feel so, whatever. What's “whatever?” Put a word to that! Well, challenged, and it's like, you don't know what the questions mean sometimes, they're worded in a sort of vague way, and when you're applying for disability, you know everything rests on what you say to these questions, so you don't really know how to handle those questions. So, say more about that fear... Well, you're dealing with a bureaucracy. I call it drone-speak. M-hmm... yeah... Like when I applied for Food Stamps, I tried talking to someone at the office, and I was explained to her, “yes I can prove out of pocket medical expenses,” but she was saying if I could just show that, than I might be eligible to get more Food Stamps. I said, “Well, I'd be happy to do that, but I wasn't aware that I could do that before,” and she got all huffy and said, “Well, we weren't trying to hide it,” but with each notice they send me, with 3 pages of information, I'm not blaming anyone, but I wasn't aware of it. And once I was aware of it, for my housing, I had to get recertified, and I submitted all this stuff. This was in October. I said, repeatedly, in written communication as well a verbally over the phone, that I need copies of, I need the originals for this other agency. And they didn't give them back to me until January! Wow... How long does it take to make copies? So, it's just like, you're dealing with bureaucracy, and it's really hard! 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
  15. 15. 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! Any other recommendations?
  16. 16. Yes, that we all should assume, that if we go to a social service agency, we might not get it, but we should assume that we should get the same level of help – or greater- than if we go into the supermarket! laughter I've heard that we should assume that! We should be able to assume that... Or at least expect something greater... we'll get better help in the Whole Foods store! 7) How many are familiar with the Special Needs Trust Program? I became a little familiar... a little... 5 8)How many of you file taxes? 6 I don't even know how to fill them out and I don't want to pay an accountant to do it... (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
  17. 17. 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. Any final statements? 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! They could stop attacking disability rights... yeah, that would be one thing the deciders could do... 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. Our low income is below low income! 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! -TRANSCRIPT END-