The supports discussed above are among those most frequently mentioned by focus group participants. Other additional supports were discussed to varying degrees. While not as widely used, these supports provided critical help to a number of participants. In some cases, the supports are most relevant to individuals with particular impairments.
a. Personal Assistance Services (PAS)
Few participants used PAS, but those who did were generally quite positive about them. One participant said that her assistant serves as her reader at work, which has allowed her to keep her job. Another participant uses a personal assistant both on and off the job, because she requires constant assistance:
"The personal assistant, the driver [are important supports]. For me it's really having somebody with me…I do have to always have someone with me. A driver, somebody to help with chores. Because I can't sweep, vacuum, and mop. Stuff like that I can't do…somebody is there in the morning and in the evening."
Several individuals struggled with the idea of using PAS, with one person saying:
"My social worker kept saying that I should be using an aide, but I just couldn't get used to the thought of a stranger touching me."
Another person, however, credited PAS with helping her regain a sense of independence:
"I felt very confined to my house until I started using an aide."
Among those who received PAS at home, the level of support needed varied with the severity of the individual's condition. One participant mentioned that the level of assistance could even vary greatly on a daily basis.
"[My assistant provides] help with my cooking, doing my shopping, helping me get ready sometimes. A lot of it hinges on what my Meniere's Disease is doing in my right ear. If it's really active then I employ my IHSS [In-Home Support Services] worker a lot more. She helps me do my laundry sometimes. She helps go to medical appointments to my various doctors. She generally provides support both homemaking, emotional, and medical support, helping me to walk around because, for example, when I've got bad Meniere's, then I can't even figure out if the ceiling is the floor."
Some individuals require assistance with housework only.
"I live by [myself], and I have a person who [comes to my house] every other Friday to [help with housework] and with that stuff that I can't reach. I'm living by myself in my own apartment. I can do everything [for the most part] by myself with family and friends and co-workers."
Others, however, need more extensive care, such as caregivers and personal attendants. A participant who was in a nursing home said he had a personal attendant for three years following his release from the home.
"I have a caregiver that comes in the morning and in the evening."
A number of participants commented that their eligibility for PAS was tied to SSI eligibility, which a number of participants lost sometime after becoming employed. These participants must now pay for their PAS out-of-pocket, and they noted the difficulty of trying to do so:
"The money I put out in expenses on [PA] services…it adds up. It's hard to have an equivalent quality of life as somebody making the same salary. [No,] it's impossible."
"[I] have to pay for my helper myself so I have to pay so much money [just to work that I have to go out] and then try to get a high-paying job."
Individuals who needed PAS in childhood typically did not receive formal services, but instead received care from family members:
"It was all supplied by the family."
"My mom, my grandmother, my aunt, they were all there to help."
Housing supports were identified by several participants. Many connected access to housing to success in competitive employment. According to one participant:
"You need a place to start from. You know, you can't hold down a job unless you have a home."
Many participants also equated access to non-institutional and non-shared housing with independence. One participant said that she lived with her parents for a while, which was a "horrible experience." Two Seattle/Tacoma participants said that having access to housing subsidies that enable them to live alone has increased their sense of independence. Having both a place to live, and having this sense of independence, agreed many participants, was linked to gaining a foothold in employment.
In a number of cases, participants credited both Section 8 and supported housing programs with assisting them with their housing needs:
"I've been out of the state mental institution since 1986. I'm in supportive housing. I have my own apartment."
"I do have Section 8. I signed up for [it] back in the 80's. I got it after eight years, I was living with my mother until then."
"My apartment complex is through Passport for Learning. It is vendorized through the Regional Center. I have been there for over one year. I like it a lot. I live by myself."
Two participants described becoming homeowners through special housing programs. One bought a home through the Federal Housing Authority. The other built her own home with the assistance of a community non-profit organization. She described the impact this success had on her self-confidence, such that she felt capable of returning to college to complete her education:
"I was in a special program where I actually built my own home. It's called Northwest Housing Development and it used to be called House My People. And I have an adorable little house that I built from scratch from the foundation up to the roof. But what it is is ten families work together and you all help each other build a home. You can get in with no down payment, but you have to commit to 30 hours a week labor building this home. It took me nine months to do it. But other people are able to help you get those hours in, like my mom would help, and my church members would help for me because I was only working part-time and couldn't have done it. I was afraid to do it honestly, I almost backed off because I hadn't been in the hospital for awhile and I was afraid the stress of it would make me sick. But it was the most rewarding thing I've ever done and I thought, ‘Wow, I built the house, now I can go back to school and get my education.' So that was a big step for me."
Not all participants, however, were positive about the Section 8 subsidized housing program. Even if eligible for Section 8 housing, participants expressed difficulty in obtaining the certificate. Then, some participants said, finding housing was a further challenge. Two people said they had recently received a Section 8 certificate, but had not yet found housing. Another participant expressed great surprise that anyone ever moved off the waiting list and obtained a Section 8 certificate.
Two participants favorably described independent living skills training they had received through a Community Living Program:
"When I was in Los Angeles I went to CLP, a Community Living Program, and I graduated from that place. They taught me how to clean house. They taught me how to cook. And, they taught me how to manage my money…You have to come there every day for three months, and then they give you a certificate, and you have a graduation party. They help you find a place to live. And they teach you how to cook, and how to clean house."
"[CLP can] help you get Section 8, too…You come in [and] they teach you how to cook and clean house, and how to manage your money, and you have to cook a meal for the whole group to show that you know how to cook. They have you cook lunch by yourself."
"I had an independent living person coming into the home. I didn't go to their center. They came to me and did personalized training, household duties, budgeting, and life skills. The focus was not [on getting] a job but, yeah, it was helpful. It did give me the sense of discipline that got me to the point where I actually wrote a resume and got the job that I got."
Many participants have access to public transportation only, and could not get to work otherwise. Among those who use public transportation, a number reported use of subsidized fare and access to free van service. Among the participants who used private transportation, a number of methods were employed to gain access. For instance, VR paid for modifications for several participants' vehicles, and in many cases participants said that spouses, other family members, and friends regularly included them as passengers in private vehicles. Another person carpools with co-workers, and one person reported having been provided transportation by her job coach.
A common theme among focus groups regarding transportation was the need for access to reliable transportation in order to maintain employment. Some participants were frustrated with the intersection of their transportation needs, and the provisions or restrictions associated with public programs. For example, one participant, who lives in the Seattle suburbs where there is no bus service or other public transportation, talked about the difficulty of securing a reliable car while receiving Medicaid or SSI benefits.
"How can you get to work if you don't have transportation? And before DSH changed it, you could only have a car worth $1,000. Excuse me, what kind of car is that? One that's going to be in the shop every other month. And now they finally raised it to, I think, $4,500 and I had to lie. I financed a 1992 Ford Taurus that was worth about $6,500 and they forced me to lie about the value of it. But I live out in Ordelon and there isn't even any bus service out there. We don't have any."
"[Although it was a good experience going to VR, their help] with transportation didn't really work out.…The access bus [they arranged] would come, like, two days later."
Among those with access to public transportation, many expressed satisfaction with the available subsidy programs. One participant, who can no longer drive due to progressive blindness, says she receives a discounted bus pass worth about $600 a year, which she credits with enabling her to continue to work. Other participants said:
"I have half fare. I got that through my doctor many years ago. It's 24 hours a day, seven days a week. I don't even show it to the bus driver. It is a dollar on my bus, [but] I just put in 50 cents, he don't even say a word to me and I don't show him nothing."
"I get bus passes from City-Ride, that's in LA. They send them to me every month. I do not have to pay. I use them to get my bus stickers so I can get to work."
Public transportation is extremely important to people with disabilities living in Los Angeles County. Many participants regularly use ACCESS Services, Los Angeles County's paratransit system for people with disabilities. One person said that, as a support for maintaining his current employment, ACCESS Services is "an obvious one," and that he logs about 100 miles a week on ACCESS.
Nonetheless, participants reported problems with the system. One person complained about bus drivers' limited training about accessibility for people with disabilities. Another said he had found it difficult to get information about how to use the bus service, and another was not satisfied with the bus schedules:
"[It's] not reliable. You're never on time. You're always too early or a little late."
Other participants discussed additional difficulties with the system:
"Sometimes I was waiting for half an hour to get to my class, and then the lift's not working. I waited for the next one. I waited for the next. Now it's half an hour, [and I've] already missed the class. I had to change all my schedule because they couldn't accommodate me so I could be at class at nine. So I had to change everything, take a class at 11 o'clock, so they could pick me up at nine, so I can be at school at ten, early, then I can eat and study. I had to schedule way early so I could be there on time for class. The good thing was [that] people are understanding."
"The person that you're interviewing with, they come at a set time and you can't be there, or they have to leave because their ride's already [there]. Sometimes they're all, ‘We'll take care of you in five minutes.' I would have to reschedule and do things at a better time. It makes it really difficult if you don't have transportation."
"I had to leave about 5:30 in the morning just to get to work by 8:30. Getting back and forth was an issue."
A few participants have and use their own vehicles. One participant received funding from VR for driving lessons and modifications to his car. Another participant says that her insurance company buys her a new vehicle about every five years. Another shares a vehicle that was purchased by his church with another individual. According to one participant:
"I could not do my job if I did not have a car. Physically it would not even happen, I would not be working. I am just lucky enough that my husband has a good enough job to pay for one, ‘cause I wouldn't be able to work."
A number of participants drive their own cars, and many have adaptive equipment on board. Some had paid for their adaptive equipment themselves or with the assistance of family members, and others had received funding from VR to make the modifications. Three participants said that they had received rebates from a car manufacturer after fitting their new cars with adaptive equipment. They had learned about the money-back option offered by most automobile manufacturers through word-of-mouth and through advertisements in disability magazines.
Many participants said that they wished to be able to drive themselves to gain a greater sense of independence, but this was difficult to accomplish for some because needed adaptive equipment was expensive and sometimes difficult to find.
One woman who wants to be able to drive herself described the challenges involved.
"I haven't been able to find the right resources to look into about the gears for a car for myself. That's the one thing I do want, is my independence to drive."
Another participant described changes he made in his driving behavior:
"I don't have car modifications, I never have.…Basically, I made my own modifications with learning to use my left foot for the brake, and the right foot for the accelerator, and so in any kind of car I get, I always have to make sure that pedals are reachable for me."
Participants discussed the issues and their ways of dealing with transportation. Transportation was paramount for access to education and employment. Multiple participants discussed their need for transportation when seeking employment. VR was able to help one participant "with a stipend" for the purpose of obtaining transportation.
Participants discussed other transportation options available to them also. One characterized his company's rideshare program, which apparently is available to all employees, as an accommodation:
"We have a rideshare program that my employer has set up [in which] they will compensate you [if] you carpool [or] walk, whichever way you get to work besides driving…They give [someone like me who,] of course, can't drive, accommodations in that sense."
d. Informal Supports from Family and Friends
Many participants related stories and events illustrating the substantial support provided by family and friends. Among the key functions performed by family and friends was the extent to which they were able to help participants accept their disabilities, encourage work efforts, and reinforce a positive self-image.
"I had a friend who really believed I could do anything. My friend's support really convinced me that I could just go out and get a job. I actually applied for two jobs -- driving a bus and bank teller, total opposites. I actually got both and had to decide. So she got me really psyched at that point."
"In terms of informal support, I guess I have other friends with disabilities, I mean, friends who have had the same disability and they've been injured for longer than I have. I kind of use them for…peer support."
"It was funny, 'cause I had a girlfriend -- a co-worker, actually -- and just recently, like you said, they forget, and we were talking on the phone, and she says, ‘Are you sitting down?' [laughter] And I said, ‘Do you realize what you just said to me?' She said, ‘Oh, oh, oh, I'm sorry.' And so when I got to work, I really thanked her. I said, ‘That was really a compliment. Because that shows you don't see the chair. You see me.'"
"[I have] friends who help me to get to and from a lot of places around the state [that] you can't get to with public transportation. That is just invaluable…Without that kind of support, I would not be able to do significant parts of my job."
"They are proud [when] I tell them I make good money…and they are happy [about] where I live."
"[It's helped me] just knowing that my family supported me. Just being really watched over, you know, just, it helps being involved."
Several participants said their families and friends had provided considerable support in maintaining their current jobs, including providing help with transportation, shopping, food preparation and offering emotional support:
"[I'm close to my family]. They help me with things like grocery shopping, stuff like that. Whenever I need a ride sometimes, they help me with that, too."
"I think my mom should be paid by the government because she is such a big help to me. In the mornings she cuts up fruit for me, vegetables to eat and she's just like really caring and emotionally, I can talk to her. She accommodates me for all my drowsiness and everything."
"My fiancé, I think, has been a very large emotional support. Every time I come up against a wall, if I have a hard time with Social Security talking to the people, [he helps me. Like,] I went through a change in rehab counselor and it was difficult getting used to the new counselor because she does things totally differently. He always finds a way to get me through it, anything, no matter what it is."
"You socialize with each other a lot. You basically have your mother, your stepfather, and then you have people around your age, brothers and sisters and cousins."
"I was always encouraged to try and do my best. My dad encouraged me to get into computers and engineering."
"Probably what really enabled me to go back to work was my husband when I got married -- just his encouragement and belief in me."
"When I entered the hospital, it was so many people that just cared about me and wanted me to get out of the hospital. They would go shopping for me, bring me home, cook food, braid my hair. It's so many people that can give you love, they don't have to but some people do have a heart."
"What helped me continue to go on, even though I knew I was hurting inside was my peer group. Other students saying, ‘Come on…you're doing good."
"In terms of informal support, I guess I have other friends with disabilities, I mean, friends who have had the same disability and they've been injured for longer than I have. I kind of use them for…peer support."
"[I have] friends who help me to get to and from a lot of places around the state [that] you can't get to with public transportation. That is just invaluable…Without that kind of support, I would not be able to do significant parts of my job."
A female participant who started to go blind progressively said that she had just recently moved to a new place to live. While it is farther from her work, she said that her new place is much closer to her friends. These friends act as an important safety net for her and they help her with added mobility and freedom. Another female participant with multiple sclerosis said that she has wonderful friends that are very supportive of her. She said that they do things like drive her around and cook for her. She also said that they keep an eye out for her in looking for jobs or services she can use.
According to some participants, friends provided invaluable help while they attended schools without adequate accommodations.
"There were no ramps at all, so I waited for four years to [have] a ramp. My friends used to come lift me up for my classes all the time, for all four years. But, now everything is accessible. [My friends would say,] ‘Are you ready?' And I'd go, ‘Yes I am, let's go.' On the way down, I came by myself. Yeah, that's the thing, you know, my friends helped me a lot."
"I was looked at as being positive with other classmates because here I am at a normal school. In high school I got my friends together. I told them, ‘I want all you guy's class schedules, because you're going to help me help someone who can't help themselves really good to get to class quicker…We're going to help push people in wheelchairs or help the ones that have no lockers, carry their books, and get them to class too. If we're on our way, and you pass someone that needs help, is it right for you to pass them up? There's going to be a day that you're going to need their help, and they're going to help you.' [And my friends] go, ‘You know what? You're right, here's our schedules.' [My friends and I] did that, [and] I found that it lasted my whole four years, plus another four."
Other participants simply spoke about the value of being able to speak with and share their experiences with friends:
"Talking to one another, yeah, that's the most important."
"When I need to talk and get out some of my thoughts I call two friends on the phone."
"[I call] my friends when I get home…Just having contact with people [is good]."
Some participants continued to have strong supports from their friends while others experienced their friendships drifting apart:
"We were going into our senior year in high school. [My friends would] sneak a bottle or two into the hospital and get me drunk once in a while. [laughter] The hospital didn't frown on it that much, to be honest with you. [Later,] I was always out with [them]. By the time I got [a van, I could just] get in and take them places. So it didn't stop me [from going out]."
"My friends went from a whole bunch to just two or three real friends…I saw my friends shying away from me and I kind of shied away from them…Getting around was kind of a problem but at that same time, I actually wound up dating a girl and becoming friends with her friends. She was actually my therapist here…Right after that is when I knew I had to get my own car because it was difficult to get around. Like I said, a couple of friends were core friends that would come and take me here and there, but it was different."
Many participants spoke of the importance of friends not only as sources of personal support, but often as resources for employment. Two participants reported they found first jobs while in high school through referrals from friends. Another focus group member had a friend who worked for a state agency who checked the state job listings and found a job for her.
"Fortunately, I've had a lot of friends who have pointed me to jobs where I could work."
"I would never have gotten the job if it wasn't for a friend of a friend. He went to apply for the job, he had another offer he was more interested in. He took that one. The other potential employer said well, who else can you recommend? There I was."
"I found most of what I found by…a friend saying by the way you should check this out and I followed all the leads as they came apparent."
Some participants reported that friends and peers whom they met in their treatment programs provided support and pressure to seek help or change medication. This was particularly important when participants had difficulty perceiving their own needs and level of disability.
"I had this one girlfriend who [is on medication herself] and she noticed that I was getting really critical and irritable, so she suggested that I go to this psychiatrist that she was going to."
"I'd be going to the mental clinic and we would discuss our illnesses, and I made some friends."
e. Plans to Achieve Self Sufficiency (PASS)
Only three participants in Newark reported using PASS (no Seattle/Tacoma participants reported use), and each was positive about the program. One participant used the program to buy a van for his work, and another used PASS to save money to start a computer business. Another participant, who eventually used PASS, said that taking advantage of the program was difficult because of a lack of knowledge of the program by SSA staff:
"[No one] in the office knew about it," he said. "There was only one guy in that office I went to. It had 75 people and it was a huge place and [you] could only see this one guy because he was the only [one who knew] how to do the thing."
Several participants in Los Angeles were familiar with PASS, and discussed how they could be used to purchase assistive technology. However, they said that only a small number of VR counselors -- and an even smaller number of Social Security counselors -- were familiar with the program or trained in how to write a PASS plan. As one participant noted, "The system is so complex that a lot of folks who work in the system don't even know all of the benefits and the programs that are available that they could be telling people about if they only knew that their agency had the program."
Another Los Angeles participant said:
"The Independent Living Resource Center [had] helped me write one up in Ventura. They were turned down. And when I got this job I'm at now, when I went to Social Security here in Long Beach, and asked the worker to give me information on PASS plans, she flat refused. She straight up told me, ‘I'm not going to give you that information,' quote, unquote. And I didn't pursue it any further. I would like to have written a PASS plan eventually, my goal would be self-employment. [But] I don't know of anybody that's ever been approved for one."
Los Angeles participants who had written PASS plans reported that the plans were very helpful in providing assistance during the transition from school to work. In some cases, SSA or Southern California Rehabilitation Services had assisted individuals with writing their plans. One participant wrote her own PASS plan for computer equipment. Another was able to purchase a van for work through his plan. Participants said PASS was a useful way to set aside work-related expenses and that it served as an incentive to transition into work. One participant described her experiences with PASS when she first began working:
"The PASS plan is a plan through Social Security where they allow you to set aside money in a separate account so it doesn't affect the $2,000 limit that is imposed on you if you're receiving SSI benefits. The only way it really helped me was when I first started working, and I was only working part-time. I was able to set aside money for work-related [expenses]. At the time I was working as a massage therapist and I was able to write a PASS plan to get some of the equipment I needed."
Another participant spoke about the value of PASS when he was attending college.
"Through Social Security, SSI, they have something called PASS plan, Plan to Achieve Self-Support. I had to come up with a plan to go to college, to take certain courses, to get a certain certificate or degree, and I had to put it in writing. My dad helped me a lot. I did that and [DR] agreed to pay a certain amount a month in addition to what I was getting from SSI to pay for school. That's the only thing they paid for, really, was the books which were pretty expensive."
f. State Workforce Development Systems
Among participants who used State Workforce Development Systems, those with the fewest skills, and seeking entry-level positions, appeared to be most satisfied with the service. Those who sought assistance with more specialized work were less satisfied.
One participant used the state employment services department when looking for her first job, but was disappointed with the experience:
"Whenever I've talked to job developers in the past, what I've heard is that, regardless of my degree, regardless of my training, or the awards I've received, or all the things I've done, what they could help me do is find a $7-an-hour job. If I want that, they'll help me. But if I'm looking for a professional position, then they can't help me, and it's ‘be off with you.'"
"I hooked up with the Department of Labor program for people with disabilities in New York City. They were not helpful at all [beyond my] getting evaluated, [and] my husband's insurance actually paid for [that]…Basically what they had was low, meager jobs to offer, very low educated jobs. And that wasn't the stuff that I was looking for…They didn't have anything [for someone with] a college degree in psychology…So they really didn't help. I mean, they did [provide] a computer to do my resume, or fax machine, but I had already secured those things myself."
g. Disability Advocacy Organizations
Several participants reported using different disability advocacy organizations for assistance with their ongoing needs. In some cases, disability advocacy organizations helped provide funding for assistive technologies, offered training, or helped participants fight for needed accommodations. For example:
"[From the] Braille Institute, I get talking books and Braille books for reading and I guess [it is practically] all of what I use now."
"And I…went to [the] United Cerebral Palsy [day training program]. I was the receptionist there and learned how to cook, [and went to] training camp there also."
"Jespy House [a facility for developmentally disabled young adults] got me this new job, I work for [a wholesale company], which is a very exciting job. I like the people a lot and things like that."
"Jespy House took me on a job interview…And I got a job. [They taught me] how to be on time, how to get there -- they travel-trained me. I [also] had a job coach."
"[Jewish Vocational Services] taught me how to break away from my mother and how to move out on my own and move down here and how to get along with my mother and speak up for myself and things like that."
"[Organizations] like Community Access do really help their members with advocacy, [with the] one-on-one support that really counts. [As an] employee of one of these [organizations], I find that employment in a non-profit organization is more supportive, than [in a governmental] organization."
One participant described the activities of the Tacoma Area Coalition of Individuals with Disabilities (TACID) in providing information about other services available in the community, and providing training to employers and co-workers about working alongside a person with a disability. In this case, the participant's co-workers had attended a workshop at TACID called "Deaf and Hearing in the Workplace: Working Together:"
"My whole life has changed since that workshop in my office. [My co-workers] had no idea what they were doing. That was why I made the comment about education of co-workers. They had no idea that they were leaving me out. They had no idea I'm sitting in this office and nobody would talk to me. And they had no idea that they were doing that until they saw the hands on demonstration at that workshop. Now all of a sudden after 3 years of isolation, I'm part of the group again."
Several participants described participation in blind organizations (particularly American Council of the Blind and National Federation of the Blind) as key to developing high self-esteem and becoming active in civil rights efforts to change attitudes about blindness as well as to expand opportunities for people who are blind. One participant, whose family had particularly negative perceptions of blindness and low expectations about his future, found great support in learning about a blind consumer organization when he was thirteen.
One participant said he received support and encouragement from a mental health advocacy group:
"I go to different conferences all over the states for National Alliance for the Mentally Ill. I see a lot of people that are having serious mental illness, and they're living, just doing presentations and stuff and that's a real encouragement."
Another participant described training services provided by a local disability advocacy organization:
"[A local] disability organization has gone out and trained bus drivers and people with disabilities on how to use the [accessible buses, and] developed systems for people who can't communicate. People who are deaf and blind have cards that they can show the bus driver, various things like that."
h. Organized Sports
Participants agreed that participation in sports provides them with friendships, a sense of family, and a peer support group for people with similar disabilities who face many of the same issues. They also agreed that participation in team sports builds skills that carry over into their professional lives as members of a company team. Comments about the support they receive from their participation in organized sports included:
"Yeah, that's how we all met, playing sports. We all put our ideas together, and look what it's turned into. [Sports] motivates you. It's total motivation."
"You want to hang out with that positive energy, you don't want to be around someone who's negative…The thing is, you want to get to that level, man, you want to show up, you want to practice, you want to play hard, cause you want to be able to compete. And seeing guys that are in chairs, in your position and still able to excel at what they do, you want to get to that level too. You want to be in the play, you don't want to be left behind. So, that forces you to show up for practice, to give 100 percent, not lag, not call in sick, not flake out on the practicing and stuff like that. It makes you want to be there."
"The discipline, and showing up for training, [and] the feeling of camaraderie, getting together with your fellow wheelchair user buddies, [these are really important]."
"[It creates] teamwork, [and] just being around everybody who's in the same position, it's a good healing environment, [to be] in competition."
Another participant reported meeting his current co-workers and fellow sports team members while attending the Abilities Expo:
"Believe it or not, I didn't know anybody in a wheelchair for the first two years of being in a wheelchair. I remember rolling into this Expo and thinking, ‘My God, there's a ton of wheelchair people in here. These people have all gone through what I've gone through. I feel so bad for them.' But these people are just laughing, cracking up, doing different things. I'm thinking, ‘Man, I must be off my game or something ‘cause these guys are doing something different [from me].' That's when I met [another participant, who works at Xtreme]. After that he pretty much exposed me to everything, and it actually happened at the Expo."
One of the individuals with a visual impairment participated in team sports:
"I wasn't very good at it but I was in soccer, I did skiing with my family, friends of mine. What else did I do? I did baseball but I wasn't very good at baseball because you have to ‘lock in' -- my spatial visual abilities aren't very good, so it's not like I could lock onto the ball when it was thrown to me. Soccer is different [because the ball is larger and it's not as difficult."
Special Olympics was a significant source of support for a number of participants, who said that participation had contributed to an increased sense of self-worth and self-reliance:
"I went out for the Special Olympics through the occupational center and I came in, like, 4th place in the 50-yard dash. [I also did] some other activities like the softball throw and the standing broad jump, and I had a great time. I even pulled a muscle in my leg for the running one. But I enjoyed it very much."
"I was in Special Olympics, too. Especially up in Danville, I was in Special Olympics for about two or three months. That was very good because we did a lot of things. We did a lot of activities together and they got me through. They got me to actually go out and face somebody to get a job. That's how they helped me."
i. Role Models/Mentors
A number of participants mentioned the value of having role models and mentors available to provide advice during difficult periods. One participant told how the advice he received from a mentor had motivated him to work.
"When I got hurt, thank God, there was a guy that was hurt before me, he was [telling me] I was all right, [but] there's stuff to still be done, and it takes money. So now I gotta work harder, cause I want a lot of things. I gotta put in a [lot of time] to make a lot of money."
Another participant identified her boyfriend as a good role model for her when she was seeking employment.
"He went through a period where he didn't have a job, and he just went out there, and no matter what, he put applications in everywhere, just kept trying, he didn't give up. I saw his efforts, and I saw how he didn't give up, and he eventually landed a really good job. He got benefits and everything, and at first it was very hard, but he didn't give up even though nothing was coming through. He kept doing it and he didn't give up."
One participant said that he understood the importance of young people having a role model who understood and could relate to their experiences. He wished to give back to people with disabilities and contribute to the lives of young people:
"I get the importance of being a role model to young children and I do camp every year. I see the difference that it makes in their life and not only do I inspire them but they more than inspire me so it's like I'm getting back what I missed out on. It's pretty powerful and it's very important."
"I lived in fear that I would die before I was 20 because I never saw a blind adult."
"I remember one time when I was a little kid, there was a deaf couple and they lived about a block away from our home and I saw them both walking down the street and they were talking to each other. ‘Look at that,' I said. Mom just grabbed me and took me away…A few years later, I saw them again. [They said,] ‘You used to live over here when you were a little boy.' [They] became my role models away from school. [My] parents went, ‘No, no, no,' but I did it."
"I went to [a] School for the Deaf…I had a lot of good, wonderful role models, a lot of deaf staff. I lived in a dorm. I had people in my classroom involved with different activities. I had a lot of exposure to deaf adults…When I went home for the weekend, I said, ‘Hey mom, dad, you know when I graduate from high school, I'm going to college.' I was eight years old and I already knew about it."
"I connected with deaf people, and they were good, they were working, they were responsible and I grew up with them."
"…I had a totally blind mobility instructor and I thought that was critical to my learning to travel because she served as a daily role model and really instilled confidence because I had confidence in her ability to travel. It kind of transferred to me, slowly. It took a long time but if I had had a sighted travel instructor, I think it would have been less effective because she could tell me her own war stories. We kind of experienced war stories together, hearing a train coming and not quite knowing where the train tracks were -- huddling together and hoping we weren't going to get hit. So I think that was real important."
"Having other blind people as mentors and that was really important to me when I was growing up. I remember being very young going to one of my first state conventions and, my gosh! There's actually blind people walking around and being lucid and all of that kind of good stuff. I think that's very, very important to have people that you can look up to."
"My mentor [hired] me. I needed one person who really believed in me. I worked for him after going to vocational rehabilitation and going to school. [At some] point, he looked at me and said, ‘Go back to nursing.' I was taking everybody's blood pressure in the office. I had always been a hospital nurse, but there weren't any openings in the hospital and that was like going from square 1 to square 100, so I went to a nursing home. There are many, many, many openings in a nursing home. They were desperate for help. They said, we'll hire you. But the hourly wage was much, much higher. So, even though I was scared to death with my first paycheck, I was able to put a down payment on a used car, and I'd been walking for five years. You don't know what an incentive that was. And the individual who told me to go back to nursing was there for me every afternoon. I'd go by the office and tell him how my day went, and he would listen to me and buy me a latte, make me feel important and kind of dusted the bruises off."
Another participant mentioned the value of public figures who serve as role models:
"Maya Angelou, Oprah Winfrey, there's a lot of people. And I could go on and on and on and on. It's just, I admire people, like the underdogs. I kind of like rooting for the underdogs, you know what I'm saying? The world thinks, ‘Well, we've kicked you down, you're going to stay down,' [and] you go, ‘No, you're not,' and you just keep rising to the occasion. 'Cause to me that's just survival, every day you have to get up and rise to the occasion."
j. Religious Community
Several participants gained a great deal of support from religious communities. Through one such community one participant said he gained access to a supported residence, a social network and volunteer work.
"I live in [something] like a compound, which is a couple of buildings that are run by a missionary group and they provide some supported living.…All of us are [people with disabilities]. The missionaries provide a lot of volunteer work but I also have people [come in to help] and then my partner helps me. So with trained friends and family and volunteers and [other] people, I get by."
Another participant counted individuals at her synagogue among her support network:
"I have lots of supports, like the people at my temple, they're very supportive. My rabbi is very supportive, plus I have several counselors. I have a psychologist I go to on a regular basis that helps me keep [in balance]. I have a special facilitator -- which is the other type of counselor that I go to -- that gives me emotional, spiritual support, so that I know where I'm going and [that] even though life gives me an obstacle, I know I have to overcome it and help other people overcome their challenges as well."
Two participants said their Bible study group provided important spiritual and emotional support. One of these individuals lives with members of his religious community and depends on them for material support as well. Another participant with severe hearing loss depends on networks with other deaf people through her synagogue:
"[I go to] Temple Bethel, for the deaf. I've been going for quite some time. I found that to be more comfortable [because] I actually understand where they're at in the prayer book. That's [also] where I do my networking in the deaf community and find out where I can get my stuff the cheapest."
"I do get some emotional support from…the Mormons. They come to my job and they ask me to help package their cards sometimes. And sisters will come over and sometimes the brothers, [they're] called missionaries, and they give me a pat on the back and some emotional support; and ask me how I'm doing."
"I know that I do believe in God, and I know that's given me the strength to go on many times when I felt ready to quit. I think that the spiritual part of your life is very important in helping you heal."
"The women in my church…when I was hospitalized, they cared for my son. I also was in a special program where I actually built my own home, and my church members helped me with that."
"My church has helped me out several times…I moved up here from Texas about 13 years ago and the church I joined up here, they helped me out a lot. I wanted to go up and see my mom and I didn't have any money to go so they bought me a round-trip plane ticket…And they helped me get a car a lot cheaper than I could get on my own. A couple of the people in the church went in together and it was like three of us, 1/3 each, and helped me get this car."
"In the beginning, [I was helped by] food banks. My church was very helpful in either directing me to resources or giving me resources."
A participant with a cognitive disability stated that his church was a very helpful support for him. He said that he volunteers his time to the church and that this was a good way for him to feel like a part of the community.
A participant with epilepsy stated that he is in support groups that are sponsored by his church. He stated that this was a very important support because it helps him better deal with his disability and makes him feel better about himself. A participant who uses a wheelchair indicated that he received support from members of his church, but until recently, he could not attend the church, which was inaccessible:
"[The support was] a twin-edge. I mean, they were a support network…If you're a shut-in, they'll help you out. I only asked [them for] $60 in 1973, when I was getting ready to go to college. They got together and bought me my first power wheelchair…The people there were supportive, but I guess because of the times, [the 70s], disabled people weren't [really] helped…One of the problems is that my church is built on the side of a hill and [there are] three flights of stairs, [with] no real space for ramps. We worked [out] other ways of doing it in the last few years but, the thing back then wasn't, ‘How can we do it,' it was, ‘We'll minister to him in his house.' The talk was always, ‘We can put an elevator in the bell tower,' but [that cost] was way above their means and I never thought to look [for] other alternatives. Small church, small congregation, small funds."
One woman's church assisted her in paying the costs of graduate school.
"I had been active in my church on disability issues because I realized the church I was going to was very inaccessible and I had two choices: either quit or start working for accessibility. And eventually I designed, with the Archdiocese, the parish advocate training program and so I was working with the Archdiocese on that…So when I went to graduate school I asked them to help out with part of my scholarship and they did."
Another participant received counseling through a church agency:
"What helped for me was…when I got sick and I was in the hospital for awhile, my mom found through Lutheran Social Services a therapist who agreed to work with me. She only charged me $5 a week and I went to her for four years."
k. Other Organized Supports
Participants described having received a variety of supports from numerous community non-profit organizations, ranging from social service agencies to volunteer service organizations:
"I also have to plug the Young Men's Christian Association, YMCA has also been an avenue I could go to, I always knew I could stay somewhere, either in a shelter there or somewhere. They always had their doors open too."
"Group homes gave me encouragement. When I felt different [or] felt unable to do certain things that other people were doing cause I was in special ed classes and stuff like that. They supported me. They gave me encouragement, they told me I could do what everybody else was doing."
"There's a Woman's Job Training Center in News Brunswick [that] was kind of like the clique that moved me along…[The people at the Women's Assistance Center were] women who had been in marriages and now were the single breadwinner of the family and had no work history…It became clear to me that life history can be just as valuable as work history. And I saw how the counselors worked with everybody, including myself, to look at…what skills were they bringing with them, and they helped me look at myself in a different way."
"I went to the Passaic County Mental Health Association and they suggested this therapist. He is very qualified in dealing with all kinds of people, but particularly those who have problems with mental illness."
"I also have mental illness and I go to a drop-in center, which is right by [the] Coalition of Consumer Mental Health Organizations. And I find the support that I get from there to be very good. I go on their retreat every year, where I learn more and more about what's going on in the world [and about how I can] help people with all kinds of disabilities."
"For me there was a really great counselor in the hospital who knew that I didn't have medical and so she walked me through all the paperwork for every single service that was available to me."
"The Volunteer Chores Services, they actually have people that come out and help you too."
"The Christmas in April program [is] for those that are disabled or low-income… They'll come out and if you need help they get people together to come out and do all the maintenance on your home if you're disabled."
Several participants had participated in Boy Scouts and Brownies, through which they gained work experience and leadership skills.
Participants also spoke about numerous organizations and programs, such as those sponsored by the Urban League, Head Start, and others, to be significant supports in helping maintain their current employment:
"We have the Urban League of Hudson County. I would like to be a teacher one day and I have all the things here that help me…I have my certificate [as a childcare provider] from the Urban League…These little certificates, they may not be a teacher's degree, I may not have a Master's degree or anything like that right now, but this is just a stepping stone for me. I'm just moving my way up."
"Here in Essex County, they have a Wise Woman Center…displaced homemakers or women that are in need of vocational re-establishment. I went to a lot of courses there for nothing. [They also have classes] that help you internally, not necessarily educational things all the time. They had a course there for a few months that we went to every day. It was kind of like a women's empowerment class. I don't want to say [that it was a class] to become more aggressive, but that's kind of what it was."
"I did a lot of study skills and resumes with the Wise Women's Center. I've been with them since, I guess, maybe about '85, and they've been really wonderful. And I know I can go at any time, even though the staff has changed over the years. They have always been in my corner; I will say that."
Several participants were able to pay for medical and equipment expenses through donations and through community and workplace fundraisers:
"When I got out, the Elks in my community bought me my first wheelchair. They heard through the community that this little girl had this accident and everything, and they raised the money [for me]."
"The men at my father's job [Ford] were really good. They raised a lot of money for me."
Several participants said that the Lions Club and the Italian-American War Veterans donated Braille dictionaries and support for assistive technology.
A participant who had had a stroke said that she had received leg braces from the Shriners Hospital for Children.
One participant described a program that he gives to which helps those individuals with new spinal cord injuries who have no insurance and cannot afford durable medical equipment. For this participant, giving back to those less fortunate than him gives him a good feeling and a sense of supporting the community, and this provides him with a sense of accomplishment.
Blind participants spoke most often about the supports they received from community-based and consumer groups.
"The consumer civil rights organization that I'm active with [NFB] has created its own model of rehabilitation to train blind people how to function well in the world. They take anecdotal experiences like skydiving or mountain climbing and they incorporate it into also a fairly uniform curriculum of Braille and computer training and it's all underscored by a course in philosophy about blindness. So there are good organizational curriculums that exist that are designed to help rehabilitate people or to give the rehabilitation, if you want to use that term. Specifically, I would allude to the Colorado Center for the Blind, the Louisiana Center for the Blind, those are curriculums that I think stand out. I mean even among people who are not affiliated with my organization, people acknowledge pretty widely that they are programs that are distinguished in what they do."
"They're run by blind people who believe in us as blind people and impart that belief to their students. And I think that that's one theme that's running through here is the people have talked about the people who really affected them in their lives, those teachers had high expectations of their students and I think that's really important that blind people surround themselves with people who have high expectations of them from the get-go, from their childhood into adulthood. That's one benefit of belonging to a consumer organization is you are surrounded -- and most of us in this room belong to consumer organizations -- I think that's interesting too -- but they surround themselves with other blind people who are out in the world doing things and expect us, expect me, to be out in the world doing things as well. They also serve as a network and support of people who I can turn to for advice. But constantly surrounding yourself with people who expect something of you instead of the alternative, which is all to common, blind people are kind of out on their own, living with family who don't really think blind people can do anything, or surround themselves with friends who adopt the majoritarian attitude in this society, that blind people can't do anything. Surrounding yourself with high expectations is key."
Focus group members were enthusiastic about the assistance they had received from support groups made up of people with similar types of disabilities. They described both groups conducted in person, and those conducted via Internet chat rooms.
"You actually learn a lot from your support groups. People are going through the same thing as you and they might have crossed that same path. 'That happened to me and I did this.' 'You did what? What was that name again?' So that helps."
"My major source of support came from an Internet support group for hard of hearing and late deaf people who had gone through this transition. We work together to learn to advocate for ourselves. [I don't know what I'd do] if I didn't have all those people on the other side of my screen who know exactly what I've gone through, to come home and scream to through my keyboard. It's not just a place to outlet it, but together we brainstorm how to solve the problem. Somebody else has already been there. They'd say, 'I had a boss like that and this is what I did.' I depend on that and I have that contact daily."
"I think the support group, like you said, finding people that are like yourself. I think support groups are one of the best things because then you meet other people who have a disability. Then you realize that, yeah, it's okay."
"[I'm] running peer support [groups] and we involve other individuals who are out there and working or volunteering and working and offer them support. Been there, done that type of thing where they have somebody kind of to look up to…You go in and talk to them. They discuss issues that they may be uncomfortable with talking with family and their doctors or whatever."
"When I was about 18, I went to a young adults coping with arthritis group. It was, ‘Wow, look at all these people like me!'…Just seeing how similar they were to me and that I wasn't the only one."
A participant who is hearing-impaired participates in a group called SHHH, or Self Help for Hard of Hearing. As a person who had spent much of her life trying to hide her disability, she felt that the support group was very helpful in feeling like she is not alone.
A number of participants said they had received help from a variety of 12-step programs:
"During my high school years, when I was 18, 19 years old, I was also put in rehab, Alcoholics Anonymous, AA. I had trouble with booze."
"I currently am working two part-time jobs, one of which I got by meeting a person at a 12-step recovery meeting."
"I go to therapy twice a month. I'm in a 12-step program. I'm just trying to maintain right now."
"I go to NA [Narcotics Anonymous] programs, NA functions. I have peers and people there that help me, that I talk to. They don't help me…maintain my job or go to work and stuff, but they talk to me which makes me feel like I'm not too much different, I'm not way out here and everybody [else is in this] little circle that's working and they've got a life. I'm a part of that circle too."
"[When I need to talk] I go to a 12-step meeting, or occasionally I've found a hot line to call, which is a support line. I developed a friendship there with some of the listeners and I call [them]."
"When I first started, I had a support group that I went to. Now I rely more on that I am a member of AA, and rely on them as my support group."
l. Incentive/Other Programs for Businesses to Hire People with Disabilities
Several participants said they believe their employers may have received tax credits or other tax incentives for hiring them. One person said she believed that her first employer had received "a tax write-off" for hiring her, while another said his employer had taken advantage of a tax credit for hiring people with disabilities, offered by the state. A participant with mental retardation was aware that his employer had received incentives for hiring him, but was unclear about the nature of these incentives:
"I've heard from [my counselor] that there's special credits to the employers. They were paying over half my wages and there's another tax credit from Rehab, too, and by reporting that is a simple incentive for a lot of employers to help people get back to work in decent jobs."
One participant described trying to take advantage of the Targeted Tax Credit program when she was looking for employment, but received a surprise instead:
"VR told me they'd give me a nice piece of paper for my prospective employer to fill out saying they'd get a tax cut if they hired me. Well I'm all excited thinking this is good news. I get hired at the school district and I give them this paper -- the school district doesn't pay taxes."
Another participant described an incentive that had been available to King County government employers at the time he was hired:
"[When I started working for the county,] I didn't realize [my disability] actually could be an asset. [There was a] selective certification program…which gave the employer a certain merit point for hiring people with disabilities."
One participant said:
"I wanted to get into the state system because I figured that I need to be in a safe place as I was going blind. So I applied to be a [claims manager with a state agency]. They provided me with adaptive technology, which was the only way I could do my job and so I guess that would be the key support there. I think also that part of why I got the job was they probably had diversity requirements or Affirmative Action requirements. And I'm also sure, by the way, that's a factor that got me into law school as well, so I appreciate Affirmative Action."
|EXHIBIT 1: Ranking of Supports by Site|
|Site/Support||Median||Percent in Category|
|Family/Peer Non-Financial Support and Encouragement||1||71.3||16.8||9.9||1||1||3|
|Access to Health Insurance/Medical Care||1||65||14.6||11.7||1.9||6.8||1|
|Special Skills or Other Training||1||63||14||15||1||7||4|
|Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)||1||50.5||21.4||8.7||5.8||13.6||1|
|Job Search Assistance||1||50.5||17.2||11.1||6.1||15.2||5|
|Specific Drugs or Treatments||2||48||10.2||13.3||8.2||20.4||6|
|Family Financial Support or Income Other than Work Earnings||2||39.4||18.2||16.2||12.1||14.1||5|
|Public In-Kind Assistance Programs (Food Stamps, Housing)||3||32.7||14.3||15.3||5.1||32.7||8|
|Special Education as a Youth||3||32.3||8.6||9.7||3.2||46.2||11|
|Personal Assistive Services||3||21.1||16.8||16.8||10.5||34.7||9|
|Family/Peer Non-Financial Support and Encouragement||1||54.4||28.1||12.3||1.8||3.5||15|
|Access to Health Insurance/Medical Care||1||69.1||20||5.5||0||5.5||17|
|Special Skills or Other Training||1||57.9||21.1||19.3||1.8||0||15|
|Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)||2||43.5||19.6||17.4||6.5||13||26|
|Job Search Assistance||3||33.3||14.6||27.1||6.3||18.8||24|
|Specific Drugs or Treatments||2||38.8||24.5||16.3||6.1||14.3||23|
|Family Financial Support or Income Other than Work Earnings||3||35.6||13.6||23.7||11.9||15.3||13|
|Public In-Kind Assistance Programs (Food Stamps, Housing)||3||35.4||6.3||10.4||10.4||37.5||24|
|Special Education as a Youth||3||35.8||5.7||15.1||18.9||24.5||19|
|Personal Assistive Services||3||33.3||14.3||11.9||4.8||35.7||30|
|Family/Peer Non-Financial Support and Encouragement||1||55.7||22.7||9.3||4.1||8.2||11|
|Access to Health Insurance/Medical Care||1||71.4||8.2||11.2||4.1||5.1||10|
|Special Skills or Other Training||1||54.8||24.7||15.1||2.2||3.2||15|
|Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)||2||50||13.8||6.3||6.3||23.8||28|
|Job Search Assistance||2||45.5||18.2||20.5||5.7||10.2||20|
|Specific Drugs or Treatments||2||47.8||14.1||9.8||7.6||20.7||16|
|Family Financial Support or Income Other than Work Earnings||2||40.5||19||13.1||3.6||23.8||24|
|Public In-Kind Assistance Programs (Food Stamps, Housing)||3||30.6||16.5||7.1||8.2||37.6||23|
|Special Education as a Youth||3||35.1||8.1||14.9||6.8||35.1||34|
|Personal Assistive Services||4||22.4||6.6||15.8||10.5||44.7||32|
|Family/Peer Non-Financial Support and Encouragement||1||61.6||21.6||10.2||2.4||4.3||29|
|Access to Health Insurance/Medical Care||1||68.4||13.3||10.2||2.3||5.9||28|
|Special Skills or Other Training||1||58.8||19.6||16||1.6||4||34|
|Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)||2||48.9||18.3||9.6||6.1||17||55|
|Job Search Assistance||2||45.1||17||17.9||6||14||49|
|Specific Drugs or Treatments||2||46||14.6||12.6||7.5||19.2||45|
|Family Financial Support or Income Other than Work Earnings||2||38.8||17.4||16.9||9.1||17.8||42|
|Public In-Kind Assistance Programs (Food Stamps, Housing)||3||32.5||13.4||11.3||7.4||35.5||53|
|Special Education as a Youth||3||34.1||7.7||12.7||8.2||37.3||64|
|Personal Assistive Services||3||23.9||12.7||15.5||9.4||38.5||71|
|EXHIBIT 2: Rankings by Impairment|
|Family/Peer Non-Financial Support and Encouragement|
|Access to Health Insurance/Medical Care|
|Special Skills or Other Training|
|Public Income Assistance/Entitlement Programs (SSI, SSDI, TANF)|
|Job Search Assistance|
|Special Drugs or Treatments|
|Family Financial Support or Income Other than Work Earnings|
|Public In-Kind Assistance Programs (Food Stamps, Housing)|
|Special Education as a Youth|
|Personal Assistive Services|