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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


VR could offer training in job seet. ing skills. • Consumer proups should develop ruidelines on what consonnes reasonsble accommodanon in the workplace. • Disseminate informadon about where to go for job maining stills and job-re. lated assistance.

• People with disabilities are unaware of the legal righus. • Most people with disabilities are un. wurt of what pending legislation a suale und nacional levels they should suppon or oppose. • Poople with disabilides need training in forming advocacy organizacions. Consumer-Gensraed Alumannes: • Professionals and independene living anters can foster local and state leader. ship within the disabled community • People with disabilities need to in form themselves and anend advocacy meetings at all levels, get on mailing lises for disability groups involved in legislation, and obtain names, addres. ses, and numbers of elected officials. • Disabled consumers should organize locally wound idenofed issues and connect with state and nabonal proups. • Training in advocacy skills should be provided.

people to live independendy. • There are not enough support poups available for people with dis. abilines and ther families. • Sexuality counseling for people with disabilioes is not available. • Local governments are unrespon. sive to disability issues, especially if solucions cost money. For example, disabled citizens are discouraged from Registering and voang by inaccessible registradon siles, polling places, and lack of transportadon. Consumer-Generated Alkmanwes: • Encourage community groups to or ganize support groups and events to in. volve disabled people and their families. • Encourage churches to work with suppon groups, and include disabled people and theu famulies in church ac. Ovidies. . • Use local media to feature stories

a to learur stones about including people with disabilides in community activities. • Ast 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 workshop and provide malenals. • Consumer groups should represent themselves a ciry council and county cour meetings, become familiar with city budgets, and advocak for funds for access improvements and disability programs. • Consumer roups should encourage and assise disabled citizens to registet 10 vove. • Use the American Civil Liberics Union to enforce exisang ccess and Registracion laws.

Employtocat Accommodations, Disiocedures, and inining Five survey icems related to job x. commodations in the workplace, work disincentives, and quality of job assist. ance and training programs were iden. ofied by 9.118 consumers as relative problems in six surveys. They received an average imponance rating of 83 per cent and an average sausfaction raong of 42 percent. Consumer-Idenafied Dimensions: • Many businesses do not provide reasonable accommodations in the workplace. • Wort disincennes saill exist within the social security system. In addition to loss of economic benefits are losses or roductions in medical benefius. housing subsidies, food slamps, antendant services. ek. • Disabled job hunters lack basic job seeking skills and are unaware of incentives to employers and laws pro hubicing disenmunadon. • Blind people have lost treu a Credit; other disabiliry groups wer de ver eligible. • People with disabilities do not linow where to go for job training or assist ance in finding a job. Consumer-Gencrased Alkemarives: • Consumer proups need to form a co

ption to lobby legislators a federal and state levels for was credits.

Employmeot Discolaination The survey items related 10 job discriminadon were identified by 9.314 consumers as top problems in eight sur reys. They received an average imporance ning of 86 percent and an averuge sapsfacbon ranng of 41 percent. Consumer Idenafied Dimensions: • People moi disabilioes are discrimanated against because of the disabuiry • Qualified disabled individuals are not oven the same opportunity as nondisabled people. Consumer-Generased Axmanses: • Consumers need to reach disabled job seekers about proper antudes and how to develop a businesslike de. meanor when dealing with potential employer. Disabled people must sell un employee on their abilines and not rely on sympathy. • Il a specific employer is perceived as insensiuve, invite a representative of that company to speak to a disability group about employment. • Independent living centers and advocacy groups need to encourage and assise disabled job applicants and employees to enforce laws and regula. dons prohibiong discriminaoon. • Disabled individuals can contact the Job Accommodations Network or sim dar resources for help in locaung jobs and training, marteong themselves to prospecove employers, and obtaining reasonable accommodation.

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Employment Opportunides Tho survey items related to employmem oppomunities were idenofied by 9.412 consumers us relaove problems in Il surveys. They received an aver me importance nong of 8 percent and an avenge sabsfaction nong of perceat. Consumer Idenahad Dinensions: • Job opportunjocs for people with disabilidcs are very limited

ll there is a nondisabled person and • disabled individual applying for a


job, employers prefer 10 nue the nondisabled person. Consuner.Gencraved Alemanives: • Consumers should educate employ ers in was credius, reasonable accommodalion, and advanuages of hung disabled employ«s. • Disability proups must keep a coul. oon going at the naponal level to lobby for reducoon of work disincenoves. • Job placement people should know which employers routinely hir disabled applicants. • L'xe publicity to inform the communiry about job needs, interesus. and capaciues of disabled people. similar 10 TV spous from Job Service on spe. cific jobs. • Talk with industries to design pro Frams for people with disabilidas sin las to programs designed for immig. rants.

end use dau to advocate for com. pliance. • Consumen can discuss partung problems with merchanus where they shop. • Consumer groups can disonbute stickers to violators. • Consumen can adend city council meetings and VOKE concerns to get adequate legislation. • Consumers can advise businesses about adequate spaces and upnghe signs. • Consumer groups can patronize businesses who provide and enforce handicapped spaces. • Publicize how to get pasting IDs. • Increase fines to over $25 to put leech into the law. • Form coalitions among groups need. ing access and parking. • Provide consumer consultation in design of spaces. • Put parting places on end of row for van lihs. ln Anderson, ON. violators get a "candid camera" treatment. In a cooperative effon between local con. sumers and the town's newspaper, a photo and brief statement by violators appeared on the front page of the local section. • Some police departments have de. putized local disabled consumers to ocket handicapped parting violators, paying their salaries from fines.

Handicapped Arting One survey item related to the issue of enforcement of parting ordinances was ickenufied as a major problem by 8.607 xeople in I) sur cys. The item received an average importance rating of 83 percent and an average satisfac. tion rating of 41 percent. Consumer Idennied Dimensions: • There are not enough handicapped parking places close to shopping and workplaces.

Many spaces are nor wide enough to unload wheelchairs or put down van lifu. • Some spaces are not well-marked wich an upnght sign. • Police do not acket violators as ohen as they should.. • Courts are las in enforcing handicapped pantung laws. Consumer Generated Allemanves: • Review local stanutes: seek scale unJormity. Includke private as well as public zones. • Ask local mayors to publicize local ordinances. • Consumer poups can conduct pub lic awareness campagne and lenter writing campaigns to local officials. • Develop rapport wide xveral police officers to assure bene enforcement. • Conduct study session with police courts. and consumer groups to pro mole enforcemeot. • Consumers can monitor violacions

lord regular, nonemergency medical care and medications. • Transportation to medical appoint. menes is difficult, especially regular long distance transportation, and trans. portation for rund ciozens who go to large cities for dialysis of cancer treat. ment. • Medical professionals we oken in sensitive in dealing with disabled pa. tiends, prefemng to deal with family members rather than communicate di. rectly with the disabled pouent as a r. sponsible adult. • Medical professionals are often unaware of special medical or physical as. sistance needs imposed by a disability Thus, discomfort and temporary set. 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 ohen una. w are of medical aspects of their own disabilities or good self-care habits. This occurs because they accept the public's definition of themselves as sick and needing to be cared for rather than healthy human beings responsible for their own well-being. • Another problem is anendant care. Uno state anendant care program is avalable (Wyoming has no Medic and waver or slate-funded program). there is no paid attendant care for low-in. come disabled consumers. They must depend on family and friends or live in nursing homes. Consumer Generated Alkemarines: • L'xe local media to describe heach problems of people with disabilides and solicit suggespons to solve these problems. • Organize local volunteers. church. and civic groups for medical transpor. anon. • Consumer groups should educate medical professionals about the special noods of disabled panents. The Associ. apon for Relarded Ciozens does this for people with developmental dis. abilioes. • Invite medical professionals to speak to meedings of consumers to increase their own sensiavity and edu. care consumers at the same time. • Provide inservice training for medi.

Health Care: Alordability

od Annilability Six survey items were selected re. levaru to the availabiling and afforda. biliry of health care, including whether hospitals accepe Medicaid and Medi. care, regulations for Medicaud and Medicare, and sensiuviny of health care providers to consumers. llems wer identified as relaove problems by 3.485 consumers in seven surveys. They received an average importance racing of 88 percent and an average satisfaction raong of 18 percent. Consumer Idennhed Dinensions: • Increasing numbers of doctors are refusing to take Medicaid or Medicare, because paymene is very late and in consistent. • There is no respike care for familia canoe for disabled and elderly Caroly members. • People with disabilities often cannot

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