Educating Democracy: In Their Own Voices
The following are excerpts from the focus groups at each of the four pilot cities that were part of the TAXFacts+ Campaign. They provide invaluable insights into the needs and fears (as well as the confusion and high level of disinformation) that exists among workers with disabilities on filing taxes and financial services, the disability benefits system, and the hopes and desires of people in the disability community that are seeking to live as independently as possible.
To read the entire report: Educating Democracy: Tax and Financial Service Needs of Working Americans with Disabilities please go to http://www.ndi-inc.org/.
"Please simplify. We do not understand the forms, questions and procedures. There are a lot of bright people here and none of us can figure it out."
"My father never told me that once I was older I would have to file my own taxes. A year later, I found out I had been fined because the taxes had been adding up."
"The state used to help me do my taxes but then there were cutbacks and the building where I went in Boston was closed. Now they tell me to go find the information and forms on the computer."
"Back in the 80s and 90s you could go to the federal building and they would help you do your taxes for free."
"Most people do not have the money to use a tax preparer. The people at the free tax place explained it and double-checked it. Doing it yourself means you can make mistakes."
"I have a child with a disability and cannot work. I filed and thought I would get back money (a credit) because of the way I filed. But I have no idea about any of it. I still today do not understand."
"I called the IRS on the 800 number to ask about "contributions" and after I pushed enough buttons, I got clarification from a man. He was very helpful"
"I have gotten a summary sheet from the IRS about what I am eligible for, but I have had to ask for it does not come automatically. I need help keeping track of all the information IRS requires. I also need help to keep all my bills and stubs. If I can claim my heat I need to know what ford to use."
Federal eligibility rules for disability are confusing and misunderstood
"There are different rules for different disabilities. It is hard to keep track of the rules. I assumed there are different money limits for SSI and SSDI"
"The amount of money I can save and be on SSI has never been made clear to me. It puts a damper on my savings because I am afraid."
"SSDI is the reason I do not keep money in the bank. They will penalize me if I have more than $250 in the bank." [False].
" I got off of SSDI twice, but had to go back on and everything was different and I did not understand. The limits do not make sense."
"We cannot even pay our rent with the amount we are allowed to have in the bank."
"If I am on SSDI I would like to know if I will be getting a return back. I am on a fixed income and having a little coming back means a lot. We feel as though we do not exist, and deserve nothing back."
"My daughter was born with a developmental disability and I have filed several times for SSI and still cannot get it. I am not working so we qualify. There are so many people I know who get services on SSDI. Those with legitimate disabilities are last."
"I had some education in high school. It was about credit, mostly. I learned how to balance my checkbook. I am 34 years old, already claimed bankruptcy and have a child with a severe disability. Since I was 18 years old, I have had many credit cards, but I did not know how to manage the money. I was working just to pay my credit cards; I did not know how to get out of it. I admit I could have used financial counseling, then and now."
"The material in the course I took was in small print, and I could not read it. The overhead screen was not set up well. There were architectural barriers. All these things should have been thought about before. They did not know how to make accommodations for people with disabilities. The classrooms were not accessible. I took what I could and met some nice people and that was it."
"I was involved in a pilot program where I learned how to do a credit check. The man there was most helpful after I told him that I needed the report in large print. However, no one taught us how to revolve issues if there was a mistake in the report. Finally, this man helped me. I didn’t understand about credit scores going up. Now I know it is important to know about this. He wrote the report in large print for me (after the fact)"
"I went to a credit counseling center once a week and I was told they could not help me because I had no credit cards (the counselor was from a credit card company). I was referred a second time to the same counselor. It was no help."
"I was exposed to a good debt service in a department store in Oregon. If you “ruined” your credit they would help you through it. They had someone to teach you and they understood that you did not learn properly. They did not want you to claim bankruptcy. They did not kill me with finance charges and late fees. Most do not realize they are spending more than they have."
Perception that borrowers with disabilities are higher risk
"Bank’s don’t always want to give us loans because they see us as a higher risk."
"I have a house and need another one with accessibility on one floor because my disability is getting worse. The real estate man looks at me like I am crazy. He runs to the back of the office when I come in. He has no idea about my financial situation and that I have a home already."
"My [national credit card] interest almost doubled. My minimum due doubled. My smaller credit cards stayed the same. My first bill after Christmas was big! They want their money."
Expressed physical challenges in doing everyday banking activities
"Some banks have physical barriers – like tall teller windows. I can’t see the teller. Also, I have to work my way through the bank, the turning radius is not enough for a wheelchair user."
"The credit union I used is more accessible than the bank I used to use."
"Lack of accessible banks is why I started banking online, but I need larger fonts and more websites need to be more accessible."
"I would be willing to travel 25 miles for one on one help with my taxes."
Practical Wisdom
"People with disabilities are not informed, especially about finances, yet you still have to report what you make if you are on public benefits."
"Only the rich make out in this country."
"Things are not explained, especially to young people with disabilities. Kids on disability get to the age where they should be educated. They do not know better."
"I have ADHD and I got revved up at work a lot. It made it hard and I ended up getting hurt. So now I am out of construction forever. I went a long time without working. I have arthritis all over. I took a bartending job for five years. I do not drink anymore, but my arthritis has taken over."
"Some disabilities are not constant. There are good days, and bad days. You need to find an understanding employer. What accommodations you need today will be different than what you need tomorrow, or next week or any point in the future.” [Referring to a mental illness."
"If you have a visible disability it may be easier to hold a job. It is hard for some to prove a disability in the first place. Especially with mental illness. What do I do? It has to be medically documented."
"I am determined to be "officially handicapped" in order to get what I deserve. I have Mass Health and the Common Heath program. In the workplace, those whose disabilities do not fluctuate make out better. It is easier for the employer to accommodate them."
Suggestions for improving the quality of our lives
"More education. Not rushed with more personal attention."
"Knowledge, more knowledge about the whole system!"
"More help, something inspiring. Perhaps an ad that would help us succeed and suggests things that the communities and families could do."
"State needs to train people to help those who need a hand up then we can move on. Education and teaching classes about taxes, for example."
"Clarity, when you have to fill out forms, you are not told anything. You are on a blind road through the system. The government needs reform."
"Education should be more comprehensive. Not about just one issue in bits and pieces. There should be an office whose responsibility it is to educate people in a more comprehensive way. Even more important, public education."
"The public needs to know how to deal with people with disabilities."
"Broaden the span of tax services for people with disabilities. There are not enough programs for us that we understand. We do not want to file, we get scared. People have offered us free tax preparation and some did not even want to do it then."
"I would like to know if someone could cover the spread between what I am eligible for and what I am not. When I do work I make money but when I cannot work because of my disability I do not make money. That short spike of employment means I am not eligible for benefits. It is always just a few dollars difference."
"We do not get recognized when we do what we are supposed to do only when we do not. People do not understand the forms, questions, and procedures. We need more insight."
"I feel the IRS is improving but when it comes to penalties and fines I feel that they should not be so high for people with low incomes."
"I know all about low cost home loans, how to get money for the down payment it is all very helpful and I wish I had done it years ago."
"I would like to own my own home but I was a compulsive shopper and had to buy something everyday."
"I owned my own business and was a computer contractor. But, when you have a disability that is undiagnosed your reputation disappears. As I grew older my disability became more obvious and it was hard to maintain my business."
"If you have a mental illness, and have anxiety, or retardation it is hard to function on a daily basis. It is hard to deal with people and understand them. You do not remember until after you end the call. Then you have to call back. Your mind just does not function right. You are nervous; it is horrible. It is like living in fear. You are trying to struggle to get by with just the little they give you. It seems as though they do not want to deal with you. You feel like nothing. It should not be like that."
"I’d like to start investing. I don’t know how. I am a young retiree and only work a few hours because of my injury. I need to add to my future. It is difficult."
"I am sitting here looking at retirement in the next 20 years and I’m looking at nothing. Some kind of financial management help would very beneficial."
"Before I see my paycheck I would like some allocated to some kind of retirement. I don’t have the luxury right now because I have to drive so far to work I never have any money left over."
"My dad pays all my bills. He pays them because I have a real rough time with my mental illness."
"It helps me to learn what I can live on and what I cannot live on, so I can be happy for who I am that I am able to live and do the things that I can do.” (Person in a wheelchair with a severe disability.)"
"I have SSDI deposited into my savings account. I get travelers checks and some cash but my apartment was broken into 6 times since 2004. My bank where I work part time suggested I put some of money into traveler checks."
"I need help to learn how to pay off my car. The money I get I spend too fast, I want to slow it down to where I can be able to make my car payments every month."
"I would tithe at my church."
"I have eight birthdays in my family, I would use it for those."
"Save for retirement."
I have on-line banking and my sister-in-law gave me an enlarged screen for my computer. But I see a fourth maybe a sixth of the screen. It is very difficult in accounting. I lose patience and don’t do it."
"When you ask for your balance they write it down on a piece of paper. I can’t see it on the paper."
"The counter in my bank is too high and the ATM is too high for people who use wheelchairs."
Reliance on public transportation important because it links individuals who do not drive to their financial services and free tax filing activities.
"Need more locations where I bank, they have only two locations. You don’t have no other location to get to."
"I bank with a bank that is at Wal-Mart. It is convenient. They are on the bus line and open and their hours are better."
"Those who don’t drive don’t have a way to get to many of the free tax sites. Maybe somebody could come to our home and help?"
"Most buses don’t go to rural areas."
"I was afraid to file my taxes or work at all because it would cost me my health care. I believed this for years."
"Someone told me this, it wasn’t a tax person, it was just somebody, you know a friend of mine."
"The free tax service was real good."
"It was a good experience for me to come to the free tax site because the preparer was experienced with disability and had a disability too. He understood."
"Most people did not believe it was free. But once they did more and more people singed-up to take advantage of it."
"When I first had my taxes done here it helped me understand how much percentage of what I would get and what I couldn’t get so I would understand it better. I realize that I can trust it more. I know what I am getting."
"In the first year I received a large EITC refund but not the same in the second and third year. It was not clear at first but the person that helped me explained it to me so I understand better now."
"I’m not that smart to do my own taxes but I could fill in the blanks on the computer and it would help me to be more independent."
"I need to understand all the pieces I need to bring to the tax site. My Mother usually reminds me of what I need to take. I’m hoping by the time she passes away, that I will be able to remember what she told me to take."
"I think for most of us the ship’s already sailed. A little late now."
"I would like to see that more people with disabilities have more access to different places. Like where I work they don’t have automatic doors to the restrooms so I always need to ask for assistance."
"Don’t penalize us for saving our money for old age."
"I’m actually living my dream now, I went to college."
"I bought a home in 2002 through Section 8. That was my dream."
"Treat people with disabilities as equals."
"I want to live more freely, more joyfully because I don’t want to be just happy."
"The American Dream for me is to own my home, even if it is a trailer."
"I think we need to be informed on different things before we sign the dotted line."
"I would like to know how to do my own taxes. Some day you know, in case the services we are talking about are not available for me anymore."
"I don’t know anyone at my bank or who to talk to when I need help."
"We need to get accurate information so we don’t make so many mistakes."
"Most false information out there we don’t know is false. People need to know what is true and what is not true. Sometimes word of mouth is not always true."
"How do we know the quality of the information we get about our taxes?"
"Would it make it easier for people if they did taxes like year around instead of once on April 15th?"
"Why don’t people teach us how to file taxes ourselves so we can do it on our own so we are more independent?"
"The free tax filing help was real good. Please don’t take it away."
"Simplify tax forms and filing requirements. Make booklets and resources more accessible."
"We need education about tax provisions we need more help to understand."
Participants discouraged and look for advocacy help from Washington, D.C.
"Can you come back here and get something going so people from DC can come and hear our own voices? It is not NY thing – they need to hear us!"
"Let DC come and live our lives on our salary."
"Does the government think we are asking for too much? Most of us have worked our whole life."
"We work, we file and we are still broke."
"Everyone has their own opinion and values and it don’t work for everyone. We need someone knowledgeable."
"I have brought my documents for you to review so you know I really have a disability.” [NYC only site where several participants came with full disability documentation as proof of their disability.]"
"I got a free savings account through [named bank]. They signed a form and part of my taxes went into the savings. They even gave me a folder with all my tax information. I knew how much I would get back."
"Many places like banks, don’t take people with disabilities depending on the type of benefits you are on. Legal aide will help, they are good."
"We never had the opportunity to know stuff like this. Thank you."
End of Life Issues
"Those of us with AIDS are going to die. We would like to plan a trust fund to leave to our children, or even a life insurance policy. I don’t think we can do it without hurting our benefits."
"I want to pre- pay for my funeral, but I can’t."
"If you are a person with a disability you need someone with you to buy life insurance because they will take advantage of us."
"I went to a debt collection agency for help and only a certain percent of the money goes toward your debt and they charge a pretty hefty fee. If the credit agency has merged recently it is even more difficult. My payment would get lost in the merger and it would start all over again."
"I think debt counseling and money management should be offered for free considering we’re trying to get out of debt."
"When I was 13 the credit card company sent me a credit card. Of course I’m going to use it. They sent it to me. You know at that age, you don’t know better."
"I want to learn how to have a budget and get out of debt."
Confusion about income and resource rules if working while on public benefits such as SSI, SSDI or Medicaid.
"I understood that your checking account or savings can’t be over $2,000 in your bank account at any time [if on SSI]. So you’re in a catch 22 you know. It’s the more you benefit for yourself, the more they take. I know it is so they try and get you on your feet but sometimes it doesn’t get you on your feet. It just pulls you farther back in the hole than to help you get on your feet and maintain your ability to do what you have to do as an adult."
"I am on Social Security Disability and there’s only a certain amount I can get up to and after a few months my Medicaid would be cut. And then I can’t handle you know I can’t have my Medicaid cut. My payee who is my sister helps me. Now where I am working they allow me to keep my Social Security and help me with this."
"I would like to get a new payee. You cannot work a full-time job just like this guy said because they’’ take your benefits. I might work full time if I could have some benefits but I am not sure I would have to check it out with a person that understood."
Keep local benefit offices central to public transportation and accessible for people with disabilities.
"It is tough for me to get to the bank – the county here does not have good transportation. I have trouble getting to work." [Only one third of group owned a car.]
"I am on Medicaid waiver and food stamps. I’ve been on it since my surgery because when I got my surgery I’m also in a program where I have my own apartment. I pay a percentage of my apartment but I didn’t have any income until they came in and helped me out until got back on my feet. It was hard because I got to keep a balance and make sure that I’m not going over my budget. Every six months I have to go in a reapply for Food Stamps at a new location with computers. There is no one to help me. Every time I go in I get frustrated and then I get very – I just end up walking out. The food stamp process is not accessible for me."
"SSI is different you go the office take a number and they call you to the counter or call you in the back to a cubical and assist you one on one. It is very professional. It may be a wait, but it is worth the wait."
Challenges of balancing current benefit structure with the rising cost of living even when working.
"I have been receiving Social Security Disability Income for a long time because I am deaf. However, it seems so limiting. The earnings are so small so I asked if I could work part-time and they told me that I could work but I could only earn up to I think its $850 or less per month to keep my eligibility. I have been working for three years now. I report my pay and have kept it under the $850 benchmark. I’ve kept that stable and done that all along, but now it seems like I’m having much more problems with my finances. I did apply for food stamps and all the other benefits because the cost of living has gone up. And they are still maintaining the same amount that I’m allowed to earn, gas prices being higher, everything else has made my budget so much tighter. When I applied for food stamps they turned me down, saying I earn too much. It was a catch 22. How can I possibly be earning too much? I can’t manage my mortgage for my mobile home. My utilities, insurance, I’m not sure how you can maintain a budget. I’m concerned about the cost of living continues to go up, SSDI and so forth doesn’t give you much of a raise each year. How do you do it? The cost of living going up much more than SSDI."
Success in using the Ticket to Work incentive.
"I started out on SSI and started with a Ticket to Work. They tell you how much you can make. They start to slowly decrease your government check as your earnings rise. It took me about a year and half to be zeroed out from SSI. But because I used the Ticket to Work it protects my Medicaid. It also protects me so if I was to lose my job or fall sick I can have my social security reinstated without having to go back through reapplying and everything else. It did cut my food stamps, it cut my Section 8 but I gave it up when I bought the house."
How participants receive information about free tax filing services
"I’ve used the 211 number – I guess its United Way. That’s how I did it this year. I wish I had known about it three years ago. I paid almost $300 every year to get my taxes done. Now I use the Goodwill VITA program it’s wonderful."
"For the past two years I have used paid preparer [mentions names] and prior to that my mom used to file it for me. I have been happy with them. It’s worth it when it’s time to pay the bills and take care of my financial responsibility. I didn’t know about VITA or information about these places that do it for free until right now."
"I think the best way to get the word out about VITA sites or free tax preparation is to post it at community centers and tell people it is free."
"At first I wondered if it was free [referring to free tax preparation] and if it is an IRS approved agency or if United Way’s name was under it. Most people would feel pretty comfortable with that because you know United Way has established a rapport with the people and with word of mouth. Or if it said “IRS approved."
"I would like information about filing taxes way before the deadline like in November. I would like to go and see someone in person to walk me through my taxes."
"I would drive 10 to 20 miles to see someone in person about my taxes."
Reluctant to file taxes because afraid to lose benefits
"I was afraid to file this year and the last year because now that I own a home I got back a little bit more and I didn’t know if that would affect me as far as my Medicaid was concerned. Even though I had already zeroed out on everything else. I didn’t know that it was going to count against me."
Many rely on family and friends and co-workers for information about benefits and tax filing.
"I can go to my brother because he has a home and he’s been in business for 22 years and he has a mortgagee and he’s been through the mill of everything."
"I asked a lady at work. I ask employees on the job that I trust. But other than that, I don’t know who else to ask."
"I asked a question at the VITA site and I wasn’t sure with the answer she gave me. It was like do you want me to file it or wait? I was like since I’m here and I need the money, I will have you go ahead and file it. But I thought my tax return should have been more than after she had forgotten to put in the taxes paid on the house. Even if it was $200 more I thought it should have made a difference. She told me that it wasn’t because of what I made this year. I thought if I asked around and they said that’s not right I could have appealed it you know. So I didn’t know what to think. And because I didn’t have any resources, I’ve kind of dropped it."
Lack of understanding of how federal agencies track individuals on public benefits who are working
"I did file my taxes and do the whole thing. They actually had a refund that I was entitled to. So I mailed it in. Then I got a letter from the IRS and the refund said that it was going to go to Social Security because I owed on an overpayment. So I was kind of reluctant after that, because of that situation. And I didn’t know that I had an overpayment. So the IRS just immediately redirected my money, didn’t pay me, my money and it went to SSI. So I got no refund. And that felt not so good."
"Isn’t it against the law for IRS to like forward your money to another agency without letting you know?"
"It felt like an invasion of privacy. How did they know what I was getting back, I know they were using my Social Security number to do that. But it didn’t feel right."
Comments for the Commissioner of IRS
"I would ask why it is that the tax refund can be taken and given to Social Security for overpayment. How it is that they have that type of relationship between those two agencies. I feel that’s not right."
"I would say that I guess he’s doing a good job. Seems like he’s dong a good job to me."
"Simplify the language. It’s so hard to understand some of their forms."
Re-filing. What do you do - I don’t know how you would ask the question. But if there was a mistake on your tax form and they found it. Is it possible that you can re-file that tax form?"
"I would like to thank him for the VITA program."
"I would tell him that I like VITA. I didn’t file before I learned about VITA."
"Better advertisement about tax agencies that will be able to help families or people in general for lesser costs or for free."
"VITA is a good service. I would keep it going. I learned too late this year but will use it next year."
"I owe money to the IRS, so I would ask him not to charge me additional penalties and interest. I owe $1400 that I don’t have. They made a payment plan for me $100 a month."
"Provide education about how to do taxes and understand what it means when you file - if they take money out or you don’t get as much back as you think."
Working people with disabilities talk about the American Dream
"I am thankful to be born in America instead of another poverty stricken country because you have the opportunity to get where you need to be. So we have a head start against other countries. If you go through the channels here you can find your way. And if you’re lucky enough to get through college and get a good job then you’ve got that. But I always look at it if you are a plumber or a surgeon, it doesn’t matter because each one of those jobs, each person has a family. And they get by the best way they can. So it doesn’t matter really matter what you are. Just if you want to achieve and you have the opportunity to do it."
"Own my own home."
"Owning my own home. I am in a course in home ownership and they are helping me with that. I am trying to stay stable where I’m at now saving money and trying to do my budget. These are my goals."
"The American dream came through for me eight years ago when I was able to come off SSDI and go back to work full time. That is all I need is to be able to work."
"My American dream is to go back to my home town in Connecticut."
"The American dream was to own my own home and my own car. But the hardest thing was to let go of Social Security and to take a step out on faith. With two children, and a single mother, it was the last thing that I believe would happen. But because I was determined, I put my all into it and I didn’t give up. I do own a home, a car and have a job."
"For the American troops to come home and just have peace."
"Making a good living."
"My kids get the best education that I can give them and that the state can give them. Graduate, go to college and raise their own family at one point in time. And for me, to support my family in a new home, you know to the best that I can. I am a working parent. I work full time. And I still cannot afford to get into my own home."
"I’m not making minimum wage. I’m making a good amount of money. I’ve been there five years, I’ve always worked ever since I was 15 years old and I still cannot get up to the point where I can get my own home. I went through Habitat for Humanity on a waiting list. I’ve been knocked down farther down on the list. I’ve been on a waiting list for Section 8 for five and a half years. I‘ve even been a hurricane victim and they have still not given me any help or assistance in trying to relocate myself or my family. I tried to find a place for us, it’s actually expensive. It’s anywhere from $900 to $1200 just for a 3 bedroom apartment. I have four children ages 2 to 15 years. When you’re going from paying $560 a month living in a mobile home for your bills and I don’t make but $700 every two weeks, give or take. That’s when I have to make those 40 hours a week just to get that budget. I pay out a 401(k) life insurance for my children and my job pays it for me. And then I pay out for my health insurance co-pays. Once in a while I can’t afford to pay for my prescriptions or the medical bills and I’m in debt and a lot of these places go for you credit. My credit has been shot down because of bills or medical bills or things that I cannot pay for. It’s not credit cards. I haven’t owned a credit card in my life. Makes it hard for me to own a home. One of my sons is bipolar he is not very able to work. The other son is not stable either. My girls help but it is hard."
"I started my dream to buy a home when my son was 15. At that time he was able to get a job. I have two kids, we all started to work together, first my son and me. We started to put it away, even if it wasn’t much, even if it was $5 a week. With my son’s help we purchased a home."
To read the entire report: Educating Democracy: Tax and Financial Service Needs of Working Americans with Disabilities please go to http://www.ndi-inc.org/.
Boston: LESSONS LEARNED FROM WORKING PEOPLE WITH DISABILITIES
(In Their Own Voices)
(In Their Own Voices)
Simplify Tax Preparation and Tax Services
"I do not understand the tax code or filing rules and neither does my counselor. It needs to be simplified.""Please simplify. We do not understand the forms, questions and procedures. There are a lot of bright people here and none of us can figure it out."
"My father never told me that once I was older I would have to file my own taxes. A year later, I found out I had been fined because the taxes had been adding up."
"The state used to help me do my taxes but then there were cutbacks and the building where I went in Boston was closed. Now they tell me to go find the information and forms on the computer."
"Back in the 80s and 90s you could go to the federal building and they would help you do your taxes for free."
"Most people do not have the money to use a tax preparer. The people at the free tax place explained it and double-checked it. Doing it yourself means you can make mistakes."
"I have a child with a disability and cannot work. I filed and thought I would get back money (a credit) because of the way I filed. But I have no idea about any of it. I still today do not understand."
Rates quality of free tax service highly
"I used the free tax service at the community center and got the credit coming to us. The wait is not long and was in and out in half an hour.""I called the IRS on the 800 number to ask about "contributions" and after I pushed enough buttons, I got clarification from a man. He was very helpful"
"I have gotten a summary sheet from the IRS about what I am eligible for, but I have had to ask for it does not come automatically. I need help keeping track of all the information IRS requires. I also need help to keep all my bills and stubs. If I can claim my heat I need to know what ford to use."
Federal eligibility rules for disability are confusing and misunderstood
"There are different rules for different disabilities. It is hard to keep track of the rules. I assumed there are different money limits for SSI and SSDI"
"The amount of money I can save and be on SSI has never been made clear to me. It puts a damper on my savings because I am afraid."
"SSDI is the reason I do not keep money in the bank. They will penalize me if I have more than $250 in the bank." [False].
" I got off of SSDI twice, but had to go back on and everything was different and I did not understand. The limits do not make sense."
"We cannot even pay our rent with the amount we are allowed to have in the bank."
"If I am on SSDI I would like to know if I will be getting a return back. I am on a fixed income and having a little coming back means a lot. We feel as though we do not exist, and deserve nothing back."
"My daughter was born with a developmental disability and I have filed several times for SSI and still cannot get it. I am not working so we qualify. There are so many people I know who get services on SSDI. Those with legitimate disabilities are last."
Lack of effective financial education and debt counseling services
"The city of Boston has some financial literacy courses, but they are mainly someone reading to you from a book. The people with disabilities there did not feel it was tailored to them. If you did not catch it the first time, there was not chance to review.""I had some education in high school. It was about credit, mostly. I learned how to balance my checkbook. I am 34 years old, already claimed bankruptcy and have a child with a severe disability. Since I was 18 years old, I have had many credit cards, but I did not know how to manage the money. I was working just to pay my credit cards; I did not know how to get out of it. I admit I could have used financial counseling, then and now."
"The material in the course I took was in small print, and I could not read it. The overhead screen was not set up well. There were architectural barriers. All these things should have been thought about before. They did not know how to make accommodations for people with disabilities. The classrooms were not accessible. I took what I could and met some nice people and that was it."
"I was involved in a pilot program where I learned how to do a credit check. The man there was most helpful after I told him that I needed the report in large print. However, no one taught us how to revolve issues if there was a mistake in the report. Finally, this man helped me. I didn’t understand about credit scores going up. Now I know it is important to know about this. He wrote the report in large print for me (after the fact)"
"I went to a credit counseling center once a week and I was told they could not help me because I had no credit cards (the counselor was from a credit card company). I was referred a second time to the same counselor. It was no help."
"I was exposed to a good debt service in a department store in Oregon. If you “ruined” your credit they would help you through it. They had someone to teach you and they understood that you did not learn properly. They did not want you to claim bankruptcy. They did not kill me with finance charges and late fees. Most do not realize they are spending more than they have."
Use money orders to pay bills because there is no hassle
"I use money orders and cash to manage my money. I get my SSDI and as I soon as I get it I cash it at the Post Office. I use money orders to pay my rent, and utilities. The cash left over I use for my monthly expenses. It is right in my hand. I do not have to hassle with the bank."Perception that borrowers with disabilities are higher risk
"Bank’s don’t always want to give us loans because they see us as a higher risk."
"I have a house and need another one with accessibility on one floor because my disability is getting worse. The real estate man looks at me like I am crazy. He runs to the back of the office when I come in. He has no idea about my financial situation and that I have a home already."
Request more information about interest rate hikes and impact on monthly credit card bills
"I have a credit card that expired and sometimes I am late with the payments that are still due. My bank merged, and now there are service charges that are getting bigger and bigger. Even though I knew the bank merged, I did not now that the fees would increase. I don’t think there was any public announcement about this? It probably came with my bill in small print.""My [national credit card] interest almost doubled. My minimum due doubled. My smaller credit cards stayed the same. My first bill after Christmas was big! They want their money."
Expressed physical challenges in doing everyday banking activities
"Some banks have physical barriers – like tall teller windows. I can’t see the teller. Also, I have to work my way through the bank, the turning radius is not enough for a wheelchair user."
"The credit union I used is more accessible than the bank I used to use."
"Lack of accessible banks is why I started banking online, but I need larger fonts and more websites need to be more accessible."
Access to public transportation important to banking and tax filing activities
"I used to go to the JFK building [federal building in Boston] but not anymore. I go to the Post Office and Library for information.""I would be willing to travel 25 miles for one on one help with my taxes."
Practical Wisdom
"People with disabilities are not informed, especially about finances, yet you still have to report what you make if you are on public benefits."
"Only the rich make out in this country."
"Things are not explained, especially to young people with disabilities. Kids on disability get to the age where they should be educated. They do not know better."
Challenges of working with a disability
"Information about my disability did not remain confidential and my fellow workers discriminated against me. As a result, I become very independent. As my disability become more visible, I have learned to deal with others. It has taken a long time to reach this point. As far as the American Dream, the only way I see it will work for me is to have a home business. But this can have a negative effect on my social life.""I have ADHD and I got revved up at work a lot. It made it hard and I ended up getting hurt. So now I am out of construction forever. I went a long time without working. I have arthritis all over. I took a bartending job for five years. I do not drink anymore, but my arthritis has taken over."
"Some disabilities are not constant. There are good days, and bad days. You need to find an understanding employer. What accommodations you need today will be different than what you need tomorrow, or next week or any point in the future.” [Referring to a mental illness."
"If you have a visible disability it may be easier to hold a job. It is hard for some to prove a disability in the first place. Especially with mental illness. What do I do? It has to be medically documented."
"I am determined to be "officially handicapped" in order to get what I deserve. I have Mass Health and the Common Heath program. In the workplace, those whose disabilities do not fluctuate make out better. It is easier for the employer to accommodate them."
Suggestions for improving the quality of our lives
"More education. Not rushed with more personal attention.""Knowledge, more knowledge about the whole system!"
"More help, something inspiring. Perhaps an ad that would help us succeed and suggests things that the communities and families could do."
"State needs to train people to help those who need a hand up then we can move on. Education and teaching classes about taxes, for example."
"Clarity, when you have to fill out forms, you are not told anything. You are on a blind road through the system. The government needs reform."
"Education should be more comprehensive. Not about just one issue in bits and pieces. There should be an office whose responsibility it is to educate people in a more comprehensive way. Even more important, public education."
"The public needs to know how to deal with people with disabilities."
Comments for the Commissioner of IRS
"More education and keep the free tax sites.""Broaden the span of tax services for people with disabilities. There are not enough programs for us that we understand. We do not want to file, we get scared. People have offered us free tax preparation and some did not even want to do it then."
"I would like to know if someone could cover the spread between what I am eligible for and what I am not. When I do work I make money but when I cannot work because of my disability I do not make money. That short spike of employment means I am not eligible for benefits. It is always just a few dollars difference."
"We do not get recognized when we do what we are supposed to do only when we do not. People do not understand the forms, questions, and procedures. We need more insight."
"I feel the IRS is improving but when it comes to penalties and fines I feel that they should not be so high for people with low incomes."
Working people with disabilities talk about the American Dream
"I used to own my home but I had to sell it to live.""I know all about low cost home loans, how to get money for the down payment it is all very helpful and I wish I had done it years ago."
"I would like to own my own home but I was a compulsive shopper and had to buy something everyday."
"I owned my own business and was a computer contractor. But, when you have a disability that is undiagnosed your reputation disappears. As I grew older my disability became more obvious and it was hard to maintain my business."
"If you have a mental illness, and have anxiety, or retardation it is hard to function on a daily basis. It is hard to deal with people and understand them. You do not remember until after you end the call. Then you have to call back. Your mind just does not function right. You are nervous; it is horrible. It is like living in fear. You are trying to struggle to get by with just the little they give you. It seems as though they do not want to deal with you. You feel like nothing. It should not be like that."
Wichita: LESSONS LEARNED FROM WORKING PEOPLE WITH DISABILITIES
(In Their Own Voices)
(In Their Own Voices)
Concerns about retirement and savings and aging parents.
"I would get a CD so I have something saved when I get old and I can’t work. My mother taught me about savings up for education. She is 93 years old and still helps me.""I’d like to start investing. I don’t know how. I am a young retiree and only work a few hours because of my injury. I need to add to my future. It is difficult."
"I am sitting here looking at retirement in the next 20 years and I’m looking at nothing. Some kind of financial management help would very beneficial."
"Before I see my paycheck I would like some allocated to some kind of retirement. I don’t have the luxury right now because I have to drive so far to work I never have any money left over."
"My dad pays all my bills. He pays them because I have a real rough time with my mental illness."
Request more education about using banking products, managing finances and handling debt
"When we begin working for the first time- we have no idea how to work a checking account or ATM card. I thought the balance tells me that I have $200 and then I think I can go spend $200 but it hasn’t accounted for the checks that haven’t come in yet.""It helps me to learn what I can live on and what I cannot live on, so I can be happy for who I am that I am able to live and do the things that I can do.” (Person in a wheelchair with a severe disability.)"
"I have SSDI deposited into my savings account. I get travelers checks and some cash but my apartment was broken into 6 times since 2004. My bank where I work part time suggested I put some of money into traveler checks."
"I need help to learn how to pay off my car. The money I get I spend too fast, I want to slow it down to where I can be able to make my car payments every month."
Given an unexpected gift of money participants were thoughtful and practical.
"I would donate to charity.""I would tithe at my church."
"I have eight birthdays in my family, I would use it for those."
"Save for retirement."
Expressed access challenges when attempting to do banking activities.
"I am visually impaired and they do have the Braille ATM machine and so on. But most places totally overlook large print. I can’t read Braille because I see well enough that I haven’t learned Braille. I have to have somebody read to me, it’s embarrassing. Or I’ll sign my check and have somebody else fill it out for me."I have on-line banking and my sister-in-law gave me an enlarged screen for my computer. But I see a fourth maybe a sixth of the screen. It is very difficult in accounting. I lose patience and don’t do it."
"When you ask for your balance they write it down on a piece of paper. I can’t see it on the paper."
"The counter in my bank is too high and the ATM is too high for people who use wheelchairs."
Reliance on public transportation important because it links individuals who do not drive to their financial services and free tax filing activities.
"Need more locations where I bank, they have only two locations. You don’t have no other location to get to.""I bank with a bank that is at Wal-Mart. It is convenient. They are on the bus line and open and their hours are better."
"Those who don’t drive don’t have a way to get to many of the free tax sites. Maybe somebody could come to our home and help?"
"Most buses don’t go to rural areas."
Fear of losing benefits if they file a tax return and little understanding of the benefits of filing even if not required under the law.
"I didn’t file taxes for ten years because I thought you didn’t have to when you made so little money. I didn’t understand that it would benefit me to file.""I was afraid to file my taxes or work at all because it would cost me my health care. I believed this for years."
"Someone told me this, it wasn’t a tax person, it was just somebody, you know a friend of mine."
Participation in free tax filing most positive experience and hope it is available next year.
"I like having someone you can go to who does your taxes that you don’t have to pay.""The free tax service was real good."
"It was a good experience for me to come to the free tax site because the preparer was experienced with disability and had a disability too. He understood."
"Most people did not believe it was free. But once they did more and more people singed-up to take advantage of it."
"When I first had my taxes done here it helped me understand how much percentage of what I would get and what I couldn’t get so I would understand it better. I realize that I can trust it more. I know what I am getting."
"In the first year I received a large EITC refund but not the same in the second and third year. It was not clear at first but the person that helped me explained it to me so I understand better now."
"I’m not that smart to do my own taxes but I could fill in the blanks on the computer and it would help me to be more independent."
"I need to understand all the pieces I need to bring to the tax site. My Mother usually reminds me of what I need to take. I’m hoping by the time she passes away, that I will be able to remember what she told me to take."
What the American Dream Means to Me
"Improve my job skills to include excel and spreadsheet. Someday I will get to use them on my computer at the bank where I work part time.""I think for most of us the ship’s already sailed. A little late now."
"I would like to see that more people with disabilities have more access to different places. Like where I work they don’t have automatic doors to the restrooms so I always need to ask for assistance."
"Don’t penalize us for saving our money for old age."
"I’m actually living my dream now, I went to college."
"I bought a home in 2002 through Section 8. That was my dream."
"Treat people with disabilities as equals."
"I want to live more freely, more joyfully because I don’t want to be just happy."
"The American Dream for me is to own my home, even if it is a trailer."
Practical Wisdom
"It would make more sense if we could have our money deposited in a place that has an investment type thing set up and were allowed to make better interest.""I think we need to be informed on different things before we sign the dotted line."
"I would like to know how to do my own taxes. Some day you know, in case the services we are talking about are not available for me anymore."
"I don’t know anyone at my bank or who to talk to when I need help."
"We need to get accurate information so we don’t make so many mistakes."
"Most false information out there we don’t know is false. People need to know what is true and what is not true. Sometimes word of mouth is not always true."
"How do we know the quality of the information we get about our taxes?"
"Would it make it easier for people if they did taxes like year around instead of once on April 15th?"
"Why don’t people teach us how to file taxes ourselves so we can do it on our own so we are more independent?"
New York City: LESSONS LEARNED FROM WORKING PEOPLE WITH DISAIBLITIES
(In Their Own voices)
(In Their Own voices)
Free tax services appreciated and would like more education and information
"We need advocacy from the IRS and others. If we go into a bank or credit union by ourselves they don’t talk to you. Minorities are treated differently and people on SSI are treated differently.""The free tax filing help was real good. Please don’t take it away."
"Simplify tax forms and filing requirements. Make booklets and resources more accessible."
"We need education about tax provisions we need more help to understand."
Participants discouraged and look for advocacy help from Washington, D.C.
"Can you come back here and get something going so people from DC can come and hear our own voices? It is not NY thing – they need to hear us!"
"Let DC come and live our lives on our salary."
"Does the government think we are asking for too much? Most of us have worked our whole life."
"We work, we file and we are still broke."
"Everyone has their own opinion and values and it don’t work for everyone. We need someone knowledgeable."
"I have brought my documents for you to review so you know I really have a disability.” [NYC only site where several participants came with full disability documentation as proof of their disability.]"
"I got a free savings account through [named bank]. They signed a form and part of my taxes went into the savings. They even gave me a folder with all my tax information. I knew how much I would get back."
"Many places like banks, don’t take people with disabilities depending on the type of benefits you are on. Legal aide will help, they are good."
"We never had the opportunity to know stuff like this. Thank you."
End of Life Issues
"Those of us with AIDS are going to die. We would like to plan a trust fund to leave to our children, or even a life insurance policy. I don’t think we can do it without hurting our benefits."
"I want to pre- pay for my funeral, but I can’t."
"If you are a person with a disability you need someone with you to buy life insurance because they will take advantage of us."
West Palm Beach: LESSONS LEARNED FROM WORKING PEOPLE WITH DISABILITIES
(In Their Own Voices)
"I do online banking because I don’t like writing the check register, so I go based on what the bank says. If the bank says it’s there, it’s there. Except for one time when there was fraud on my account and I didn’t know about it. Then I called the bank and had to question it."
(In Their Own Voices)
Daily banking activities enhanced by access to online banking.
"I know exactly what my balance is all the time. When I go on the computer I don’t have to try to talk to somebody. It saves a lot of time for me.""I do online banking because I don’t like writing the check register, so I go based on what the bank says. If the bank says it’s there, it’s there. Except for one time when there was fraud on my account and I didn’t know about it. Then I called the bank and had to question it."
Received good advice through first time homebuyer education program.
"I bought a home through the first time home buyers program, you had to take a course. We also had to do financials and budgeting and everything else. The thing I learned the most about the course was not to make any big purchases the first year I owned my home. I followed that advice. It was good."Expressed desire for reliable and affordable debt counseling help.
"It [debt counseling] would be a good idea if was to be through a program something like what you’re doing, someone that cares about he people here rather then a company that actually took money from people. Instead of helping consolidate debt it was totally the opposite. It would put people in a bigger hole than when they came in. The first payment made on your debt usually went to the company not the creditors.""I went to a debt collection agency for help and only a certain percent of the money goes toward your debt and they charge a pretty hefty fee. If the credit agency has merged recently it is even more difficult. My payment would get lost in the merger and it would start all over again."
"I think debt counseling and money management should be offered for free considering we’re trying to get out of debt."
"When I was 13 the credit card company sent me a credit card. Of course I’m going to use it. They sent it to me. You know at that age, you don’t know better."
"I want to learn how to have a budget and get out of debt."
Confusion about income and resource rules if working while on public benefits such as SSI, SSDI or Medicaid.
"I understood that your checking account or savings can’t be over $2,000 in your bank account at any time [if on SSI]. So you’re in a catch 22 you know. It’s the more you benefit for yourself, the more they take. I know it is so they try and get you on your feet but sometimes it doesn’t get you on your feet. It just pulls you farther back in the hole than to help you get on your feet and maintain your ability to do what you have to do as an adult."
"I am on Social Security Disability and there’s only a certain amount I can get up to and after a few months my Medicaid would be cut. And then I can’t handle you know I can’t have my Medicaid cut. My payee who is my sister helps me. Now where I am working they allow me to keep my Social Security and help me with this."
"I would like to get a new payee. You cannot work a full-time job just like this guy said because they’’ take your benefits. I might work full time if I could have some benefits but I am not sure I would have to check it out with a person that understood."
Keep local benefit offices central to public transportation and accessible for people with disabilities.
"It is tough for me to get to the bank – the county here does not have good transportation. I have trouble getting to work." [Only one third of group owned a car.]
"I am on Medicaid waiver and food stamps. I’ve been on it since my surgery because when I got my surgery I’m also in a program where I have my own apartment. I pay a percentage of my apartment but I didn’t have any income until they came in and helped me out until got back on my feet. It was hard because I got to keep a balance and make sure that I’m not going over my budget. Every six months I have to go in a reapply for Food Stamps at a new location with computers. There is no one to help me. Every time I go in I get frustrated and then I get very – I just end up walking out. The food stamp process is not accessible for me."
"SSI is different you go the office take a number and they call you to the counter or call you in the back to a cubical and assist you one on one. It is very professional. It may be a wait, but it is worth the wait."
Challenges of balancing current benefit structure with the rising cost of living even when working.
"I have been receiving Social Security Disability Income for a long time because I am deaf. However, it seems so limiting. The earnings are so small so I asked if I could work part-time and they told me that I could work but I could only earn up to I think its $850 or less per month to keep my eligibility. I have been working for three years now. I report my pay and have kept it under the $850 benchmark. I’ve kept that stable and done that all along, but now it seems like I’m having much more problems with my finances. I did apply for food stamps and all the other benefits because the cost of living has gone up. And they are still maintaining the same amount that I’m allowed to earn, gas prices being higher, everything else has made my budget so much tighter. When I applied for food stamps they turned me down, saying I earn too much. It was a catch 22. How can I possibly be earning too much? I can’t manage my mortgage for my mobile home. My utilities, insurance, I’m not sure how you can maintain a budget. I’m concerned about the cost of living continues to go up, SSDI and so forth doesn’t give you much of a raise each year. How do you do it? The cost of living going up much more than SSDI."
Success in using the Ticket to Work incentive.
"I started out on SSI and started with a Ticket to Work. They tell you how much you can make. They start to slowly decrease your government check as your earnings rise. It took me about a year and half to be zeroed out from SSI. But because I used the Ticket to Work it protects my Medicaid. It also protects me so if I was to lose my job or fall sick I can have my social security reinstated without having to go back through reapplying and everything else. It did cut my food stamps, it cut my Section 8 but I gave it up when I bought the house."
How participants receive information about free tax filing services
"I’ve used the 211 number – I guess its United Way. That’s how I did it this year. I wish I had known about it three years ago. I paid almost $300 every year to get my taxes done. Now I use the Goodwill VITA program it’s wonderful."
"For the past two years I have used paid preparer [mentions names] and prior to that my mom used to file it for me. I have been happy with them. It’s worth it when it’s time to pay the bills and take care of my financial responsibility. I didn’t know about VITA or information about these places that do it for free until right now."
"I think the best way to get the word out about VITA sites or free tax preparation is to post it at community centers and tell people it is free."
"At first I wondered if it was free [referring to free tax preparation] and if it is an IRS approved agency or if United Way’s name was under it. Most people would feel pretty comfortable with that because you know United Way has established a rapport with the people and with word of mouth. Or if it said “IRS approved."
"I would like information about filing taxes way before the deadline like in November. I would like to go and see someone in person to walk me through my taxes."
"I would drive 10 to 20 miles to see someone in person about my taxes."
Reluctant to file taxes because afraid to lose benefits
"I was afraid to file this year and the last year because now that I own a home I got back a little bit more and I didn’t know if that would affect me as far as my Medicaid was concerned. Even though I had already zeroed out on everything else. I didn’t know that it was going to count against me."
Many rely on family and friends and co-workers for information about benefits and tax filing.
"I can go to my brother because he has a home and he’s been in business for 22 years and he has a mortgagee and he’s been through the mill of everything."
"I asked a lady at work. I ask employees on the job that I trust. But other than that, I don’t know who else to ask."
"I asked a question at the VITA site and I wasn’t sure with the answer she gave me. It was like do you want me to file it or wait? I was like since I’m here and I need the money, I will have you go ahead and file it. But I thought my tax return should have been more than after she had forgotten to put in the taxes paid on the house. Even if it was $200 more I thought it should have made a difference. She told me that it wasn’t because of what I made this year. I thought if I asked around and they said that’s not right I could have appealed it you know. So I didn’t know what to think. And because I didn’t have any resources, I’ve kind of dropped it."
Lack of understanding of how federal agencies track individuals on public benefits who are working
"I did file my taxes and do the whole thing. They actually had a refund that I was entitled to. So I mailed it in. Then I got a letter from the IRS and the refund said that it was going to go to Social Security because I owed on an overpayment. So I was kind of reluctant after that, because of that situation. And I didn’t know that I had an overpayment. So the IRS just immediately redirected my money, didn’t pay me, my money and it went to SSI. So I got no refund. And that felt not so good."
"Isn’t it against the law for IRS to like forward your money to another agency without letting you know?"
"It felt like an invasion of privacy. How did they know what I was getting back, I know they were using my Social Security number to do that. But it didn’t feel right."
Comments for the Commissioner of IRS
"I would ask why it is that the tax refund can be taken and given to Social Security for overpayment. How it is that they have that type of relationship between those two agencies. I feel that’s not right."
"I would say that I guess he’s doing a good job. Seems like he’s dong a good job to me."
"Simplify the language. It’s so hard to understand some of their forms."
Re-filing. What do you do - I don’t know how you would ask the question. But if there was a mistake on your tax form and they found it. Is it possible that you can re-file that tax form?"
"I would like to thank him for the VITA program."
"I would tell him that I like VITA. I didn’t file before I learned about VITA."
"Better advertisement about tax agencies that will be able to help families or people in general for lesser costs or for free."
"VITA is a good service. I would keep it going. I learned too late this year but will use it next year."
"I owe money to the IRS, so I would ask him not to charge me additional penalties and interest. I owe $1400 that I don’t have. They made a payment plan for me $100 a month."
"Provide education about how to do taxes and understand what it means when you file - if they take money out or you don’t get as much back as you think."
Working people with disabilities talk about the American Dream
"I am thankful to be born in America instead of another poverty stricken country because you have the opportunity to get where you need to be. So we have a head start against other countries. If you go through the channels here you can find your way. And if you’re lucky enough to get through college and get a good job then you’ve got that. But I always look at it if you are a plumber or a surgeon, it doesn’t matter because each one of those jobs, each person has a family. And they get by the best way they can. So it doesn’t matter really matter what you are. Just if you want to achieve and you have the opportunity to do it."
"Own my own home."
"Owning my own home. I am in a course in home ownership and they are helping me with that. I am trying to stay stable where I’m at now saving money and trying to do my budget. These are my goals."
"The American dream came through for me eight years ago when I was able to come off SSDI and go back to work full time. That is all I need is to be able to work."
"My American dream is to go back to my home town in Connecticut."
"The American dream was to own my own home and my own car. But the hardest thing was to let go of Social Security and to take a step out on faith. With two children, and a single mother, it was the last thing that I believe would happen. But because I was determined, I put my all into it and I didn’t give up. I do own a home, a car and have a job."
"For the American troops to come home and just have peace."
"Making a good living."
"My kids get the best education that I can give them and that the state can give them. Graduate, go to college and raise their own family at one point in time. And for me, to support my family in a new home, you know to the best that I can. I am a working parent. I work full time. And I still cannot afford to get into my own home."
"I’m not making minimum wage. I’m making a good amount of money. I’ve been there five years, I’ve always worked ever since I was 15 years old and I still cannot get up to the point where I can get my own home. I went through Habitat for Humanity on a waiting list. I’ve been knocked down farther down on the list. I’ve been on a waiting list for Section 8 for five and a half years. I‘ve even been a hurricane victim and they have still not given me any help or assistance in trying to relocate myself or my family. I tried to find a place for us, it’s actually expensive. It’s anywhere from $900 to $1200 just for a 3 bedroom apartment. I have four children ages 2 to 15 years. When you’re going from paying $560 a month living in a mobile home for your bills and I don’t make but $700 every two weeks, give or take. That’s when I have to make those 40 hours a week just to get that budget. I pay out a 401(k) life insurance for my children and my job pays it for me. And then I pay out for my health insurance co-pays. Once in a while I can’t afford to pay for my prescriptions or the medical bills and I’m in debt and a lot of these places go for you credit. My credit has been shot down because of bills or medical bills or things that I cannot pay for. It’s not credit cards. I haven’t owned a credit card in my life. Makes it hard for me to own a home. One of my sons is bipolar he is not very able to work. The other son is not stable either. My girls help but it is hard."
"I started my dream to buy a home when my son was 15. At that time he was able to get a job. I have two kids, we all started to work together, first my son and me. We started to put it away, even if it wasn’t much, even if it was $5 a week. With my son’s help we purchased a home."