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The town meetings provided an insight that may be helpful.

In gathering after gathering, disabled citizens stood ready to

take significant responsibility for ensuring that their basic

rights are met. There was a consistent theme of self-help: what

we ourselves can do to make things better.

We recommend that the technical assistance amendments for

the ADA encourage self-help initiatives. Consuners should be

involved in setting access goals in local communities. Disability

Ambassadors programs might be established to promote person-to

person contact between local consumer representatives and

businesspeople, and to negotiate reasonable accommodations. Self

help micro-grants might be awarded to encourage citizen involvement in setting goals, working for their implementation,

and monitoring goal attainment. Local implementation scorecards

might be used to make public each community's progress in

implementing the ADA. The national network of over 300

independent living centers could play a role in supporting these

self-help initiatives and negotiating differences in the

successful implementation of the ADA.

We hope that this testimony contributes to your discussion

about this, one of the most important pieces of civil rights

legislation of our times. Maximum involvement by disabled citizens in the law's implementation can help bring down the barriers of discrimination. Our collective actions should help bring us a step closer to the long-awaited dream of full access for all our citizens.

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Common Concerns of Disabled Americans:

Issues and Options

by Yolanda Suarez de Balcazar, Barbara Bradford, and Stephen B. Fawcett

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information was obtained when the re. sulus of each survey were discussed in lown mactings. Disabled citizens dis cussed major issues, identifying spe. cific dimensions of issues and generate ing possible soluçons.

MAJOR PROBLEMS IDENTU IED BY DISABLED AMERICANS This section provides a summary of 18 issues identified as major problems, which are organized alphabetically by category headings. Under cach calego

y problematic aspects are noted as well as the total number of participants who responded to surveys in which that issue was chosen as a top prob lem. The overall average importance and satisfaction ratings for all respon. dents are also presented.

faoon raong of 17 percent. Conswner.ldenafied Dimensions: • In many businesses and restaurants, the restrooms are inaccessible. • The resovom doors are 100 hard 10 push, and the scalls are too narrow. Consumer-Gencrased Alkemarrves: • Make a list of xcessible and R. sponsive businesses. • Survey businesses and provide feedback and suggessons. • Write leners to local businesses about upgrading facilides. • Consumers should keep informed about and review access plans and per. mits for new construction in the community.

The hallmark value of the disabilities nghts and independent living move. ments is the assurance of equal access 10 all activities society offers. Doch work and leisure-related. Over 30 mul. lion people with disabilities accepe re sponsibility for their work, fanly, and individual lives. Their substantial con. onbution to society can be aronbuted both to personal competence and to the strengths or those communities that foster and support antempts to live in. dependently However, there are still many physical and social barners that limit adequate jobs. housing, accessi. ble transportation, and other needed services. These community problems thwan even the most heroic personal ancmpts to pursue a full life. .. Thus arocke oudines the major prob kems in communibes the limut inde. pendence. It also provides allemaoves for xhion from the perspecove of people with disabilincs. It summarizes quanockove data from nearly 13.000; people with disabilities in 319 com ! munjoies in 10 states and provides qual! icative information about the issues and opoons they identified during local town meetings and public forums. This com pendium presonus common concems of pouple with disabilioes and their insig hes into what acoons would help as sure equality of opportunity.

Questionnaires were administered to al identified ciozens with disabilincs in the local community or state. Sponsonng organizations included indepentent living centers, slave vocational re. habilitauon agencies, and consumer advisory communecs. Average scores for importance and sausfaction were used to identify relapve strengths (i.e., lems of high importance and lugh satisfaction) and possible problems (i.e.. items of high importance and low satisfaction). Finally, qualitaove

Assistive Devices: Niordability and Aidilability The issue of ussistive devices (c.8., wheelchairs) itt olves aspects such as affordability, avalability of financial assistance, cost of services and repair, cost of rencal, and price. Six related survey items were chosen by consum. ers and responded to by 6,355 people with disabilities in 6 different surveys. The issues received consistenty high importance raongs, an average of 80 percent, and relagvely low satisfaction ratings, an average of 12 percent. Consumer Idennfied Dimensions: • Assistive devices, such as wheel. chairs, are very expensive. Most people with disabilities do not have enough money to purchase devices. " • Rencal or assistive devices is almost nonexistent. I rencal is possible, consumers don't know where to go or get needed information. • Medicaid and Medicare do not cover al assistive devices. Consumer Generated Alternatives: • Change legislation regarding Medicaid and Medicare to cover pur chase and repur of assisuve devices.

Commercial Services: Availability of Discounts A second issue related to commercial services and identified as a problem is the availability of special rates for disabled consumers. This issue was selected in one survey involving 1.185 respondents, with an importance ranng of 82 percent and a satisfaction rating of 35 percent. Consumer Idengfied Dimensions: • Disabled people do not get the same discounts and shopping prvileges as senior citizens. Most disabled people are on a very low fixed income. Consumer.Generated Alternanses: • Independent living centers can sell discount cards to consumers for use with participating merchants, as was donc by Westside CIL in Los Angeles. • Have a group of disabled people discuss a proposal with local merchants.

YOLANDA SUAREZ DE BALCAZAR is research associak and SARBARA BRADFORD is caring associar as the Research and Training Censt on Inde. penuken Lining. Unvermiy of Kansas, where STEPHEN 8. FAMCETT U re. search associare and professor in the department of human development. This article is adapued from a Research and Training Center publicacion.

Comspunity Support and Respoasiveness This category includes issues related to family, community and government support in mecong the needs of per sons with disabilities. Five somewhat related items were chosen by 1.914 consumers in six surveys. They received consistendy high importance ratings, with an average of 86 percent, and relauvely low sapsfaction rangs. with an average of 46 percea Consumer.idknnfied Dimensions: • Families and communides do not encourage disabled members to be in dependent. • The community does not provide opportunities or assistance for disabled

Corarercial Services: Accessibility The issue of accessibility of businesses. particularly public restrooms. has been selected as a problem in three different surveys. Two related arvey items were responded to by 299 consumers. The is sues were raid with an average impar cance of 87 percent and an average satis

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• VR could ofter training in job set. ing skills. • Consumer poups should develop guidelines on whai consortes reasonable accommodanon in the workplace. • Disseminate information about wher to go for job training skills and job-R. lated assistance.

• People with disabilities are unswers of the legal righus. • Most people with disabilities are unwat of what pending legislation a slate and national levels they should suppon or oppose. • Poople with disabilioes need training in forming advocacy organizacions. Consumer-Censrased Alamatives: • Professionals and independent living anters can fosiet local and since leader. ship within the disabled community. • People with disabilities need to inform themselves and arend advocacy meetings at all levels, get on mailing lists for disability groups involved in legislation, and obtain names, addres. ses, and numbers of elected officials. • Disabled consumers should organize locally around idenofied issues and connect with state and national poups. • Training in advocacy skills should be provided.

Employmucot Accommodations, Disiocedures, and Training Five survey icems related to job ac. commodations in the workplace, work disincentives, and quality of job assist ance and training programs were iden. oified by 9.118 consumers as relative problems in six surveys. They received an average importance rating of 83 percent and an average sausfaction racing of 42 percent. Conswner-Idenafied Dimensions: • Many businesses do not provide reasonable accommodations in the workplace. • Wort disincenaves soll exist within the social security system. In addition to loss of economic benefits are losses a roductions in medical benefius. housing subsidies, food stamps, artendant services, etc. • Disabled job hunters lack basic job seeking skills and are unaware of incentives to employers and laws pro hibiting disenmunason. • Blind people have lost dreu tax Credit; other disability groups wer dever cligible. • People with disabilities do not know where to go for job training or assistance in finding a job. Consumer-Gencraved Aliemasives: • Consumer proups need to form a co abition to lobby legislators as federal and state levels for iar credits.

Employweot Disclaiantiloo Two survey items related to job discriminadon were identified by 9.314 consumers as top problems in eight surveys. They received an average impor ance ning of 86 percent and an average sadisfaction raang of 41 percent. Consumer-ieknafied Dimensions: • People mth disabilides we disetumanated against because of the disability • Qualified disabled individuals are not pven the same opportunity as nondisabled people. Consumer-Generased Numanves: • Consumers need to reach disabled job seekers about proper artudes and how to develop a businesslike de. meanor when dealing with a potential employer. Disabled people must sell un employer on their abilities and not rely on sympathy. • Il a specific employer is perceived as insensiuve, invite a representative of that company to speak to a disabil. ity group about employment. • Independent living centers and ad. vocacy groups need to encourage and assise disabled job applicants and em. ployees to enforce laws and reguladons prohibiong discriminadon. • Disabled individuals cu contact the Job Accommodations Network or similas resources for help in locaung jobs and training, markeong themselves to prospecove employers, and obraining reasonable accommodation.

Employmeat Opportunides Two survey items related to employmem opportunities were idenofied by 9,412 consumers as relacive problems in II surveys. They received an averse importance nong of 4 percent and an average subsfaction rong of 40 percent. Consumer Idenaiped Dimensions: • Job opportunides for people wich disabilioes are very limited. • If there is a nondisabled person and • disabled individual applying for a

people to live independendy. • There are se enough support poups available for people with disabilioes end ther families. • Sexuality counseling for people with disabilioes is not available. • Local governments we uncespon. sive to disability issues, especially if solucions cost money. For example, disabled ciozens are discouraged from registering and voong by inaccessible registration sites, polling places, and lack of transportabon. Consumer-Gencrased Alkmanwes: • Encourage community groups to or ganize support groups and events to involve disabled people and their families. • Encourage churches to work with support groups, and include disabled people and theu families in church a. vides. • Use local media to feature stories about including people with disabilioes in community activities. • Ask city councils for help in or. ganizing programs that will encourage independence for disabled people and their families. • Independent living centers should provide training for their staff coun. selors in sexuality counseling or bring in professional counselors for a work. shop and provide materials. • Consumer groups should represent themselves a city council and county cour meetings. become familiar with city budgets, and advocake for funds for access improvements and disability programs. • Consumer groups should encourage and assist disabled citizens to registet to vote. • Use the American Civil Liberies Union to enforce exisang sccess and registration laws. Diesbasty Rights and Advocacy Issues related to involving disabled ciozens is advocacy ecovicies, increasing their browledge about the nighes, and training in well-edvacey were selected in four different arveys. Three alused questions were chosen by 2.430 people with disabilidies. They received an averuge importance rating of 88 percent and

rverage satisfaction raong of 45 per com. Consumer-ldenafied Dimensions:

FALL VA

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job. employers prefer to hue the non. and use dau to advocate for comdisabled person

pliance. Consumer-Generased Alternatives: • Consumers can discuss partung • Consumers should educate employ. problems with merchanus where they en in de credius. Resonable accom. shop. modation, and advanuges of haning • Consumer groups can disonbute disabled employees.

Stickers to violators. • Disability proups must keep a coulj. • Consumers can attend city council son young at the naponal level to lobby meetings and voice concerns to get for reducson of work disincenoves. adequate legislation. • lod placement people should know • Consumers can advise businesses which employers routinely hire dis- about adequate spaces and upnghe abled applicants.

signs. • L'xe publicity to inform the commu- • Consumer groups can paoonize nary about job needs. intereses, and businesses who provide and enforce capacities of disabled people, simular handicapped spaces. 10 TV spous from Sub Service on spe. • Publicize how to get parking IDs. cific jobs

• Incras fines to over $25 to put • Talk wich wdustnes to design pro

teeth into the law. fans for people mah disabilides sime • form coalitions among groups need. Want to programs designed for immugo ing access and parking.

• Provide consumer consultation in

design of spaces. Handicapped Parking

• Put parking places on end of row for One survey item related to the issue of van lihs. In Anderson, IN, violators enforcement of partung ordinances get a "candid camera treatment. In a was ik nufied as a major problem by cooperative effort berween local con1.607 people in 13 suneys. The item sumers and the town's newspaper, a eceived an average importance rating photo and brief statement by violators of 33 percent and an average satisfac. appeared on the front page of the local non rating of 41 percent.

section. Consumer Idennhird Dimensions: • Some police departments have de. • There are not enough handicapped pulired local disabled consumers 10 parking places close to shopping and ocket handicapped parting violators, workplaces.

paying their salanes from fines. • Many spaces are not wide enough no unload wheelchaurs or put down van Health Care: Adordability htts

Rod Availability • Some spaces we nor well-marked Six survey items were selected re. ich an upnghe sign.

levant to the availability and afforda• Police do not ticket violators as bility of health care, including whether when as they should

hospitals accepe Medicaid and Medi• Courts are lu in enforting handi- care, regulations for Medicad and capped partung laws.

Medicare, and sensioviry of health Consumer-Generased Alkemanves: care providers to consumers. Items • Review local stanutes: seek stare un- were identified as relaove problems by formury Laclude povale as well as 3.485 consumers in seven surveys. public cones.

They received an average importance • Ask local mayors to publicize local raning of 88 percent and an average ordinances

sausfacdon raong of 4 percent. • Consumer poups can conduct pub Consumer Idennped Dimensions: li veness campaigns and lenter • Increasing numbers of doctors are winng campaigns to local officials.

refusing to take Medicad or Medicare, • Develop rapport with everal police because payment is very late and inofficers to assure bene enforcement. consistent. • Conduct study session with police • There is no respice care for families cours, and consumer groups to pro caring for disabled and elderly family mox enforcemeat.

members. • Consumen che monitor violacions • People with disabilities ofen cannot

afford regular, nonemergency medical car and medications. • Transportation to medical appoint. ments is difficult, especially regular long distance transportation, and orans. portation for rural ciuzens who go to large cities for dialysis or cancer treatment. • Medical professionals are oken insensitive in dealing with disabled pa. tenis. prefemng to deal with family members rather than communicate directly with the disabled pauent as a po sponsible adult. • Medical professionals are often unaware of special medical or physical as. sistance needs imposed by a disability Thus, discomfort and temporary sele backs can result or even life-threatening situations. • The general public is unaware that existing programs do not provide adequate medical care for people with disabilities. • Disabled consumers are ofen unaware of medical aspects of their own disabilities or good self-care habics. This occurs because they accepe che public's definition of themselves as sick and needing to be cared for rather chan healthy human beings responsible for their own well-being. • Another problem is anendant care. Uno state anendant care program is avulable (Wyoming has no Medicud waver or slate-funded program), there is no paid anendant care for low-in. come disabled consumers. They must depend on family and friends or live in nursing homes. Conswner-Generased Alemanives: • L'se local media to describe health problems of people with disabilioes and solicit suggesbons to solve these problems. • Organize local volunteers. church. and civic groups for medical transcor. Danon. • Consumer groups should educate medical professionals about the special needs of disabled panents. The Associ. doon for Retarded Citizens does this for people with developmental dis. abilioes. • Invice medical professionals 10 speak to meedings of consumers to increase their own sensiavity and edu. cate consumers at the same time. • Provide inservice training for medi.

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