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making changes.

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. Consumers should be involved in setting access goals in local communities. Disability Ambassadors programs might be established to promote person-toperson contact between local consumer representatives and businesspeople, and to negotiate reasonable accommodations. Selfhelp 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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The hallmark value of the disabilities nghts and independent living move. ments is the assurance of equal access to all activities society offers. both work and leisure-related. Over 30 mullion people with disabilities accept responsibility for their work. family, and individual lives. Their substantial contribution to society can be attributed both to personal competence and to the strengths of those communities that foster and support attempts to live inJependently However, there are still many physical and social barners that limit adequate jobs, housing, accessi. ble transportation, and other needed services. These community problems thwart even the most heroic personal attempts to pursue a full life.

This aracle outlines the major prob lems in communibes that limut independence. It also provides alteranves for action from the perspective of people with disabilities. It summariīzēs quanotative data from nearly 13,000 people with disabilities in 319 com-! munities in 10 states and provides qualitative information about the issues and options they identified during local town meetings and public forums. This com pendium presents common concerns of people with disabilities and their insights into what actions would help assure equality of opportunity.

Questionnaires were administered to all identified citizens with disabilites in the local community or state. Spon." soning organizations included independent living centers, state vocational re. habilitation agencies, and consumer advisory committees. Average scores for importance and satisfaction were used to identify relanve strengths (i.e., items of high importance and high satisfaction) and possible problems (i.e.. items of high importance and low satisfaction). Finally, qualitanve

YOLANDA SUAREZ DE BALCAZAR is research associate and BARBARA BRADFORD is training associate as the Research and Training Center on Independent Living. University of Kansas, where STEPHEN 8. FAWCETT is research associate and professor in the department of human developmens. This article is adapted from a Research and Training Center publication.

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information was obtained when the results of each survey were discussed in town meetings. Disabled citizens discussed major issues, identifying spe. cific dimensions of issues and generat. ing possible solutions.

MAJOR PROBLEMS IDENTIFIED BY DISABLED AMERICANS This section provides a summary of 18 issues identified as major problems. which are organized alphabetically by category headings. Under each category. 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 respondents are also presented.

Assistive Devices: Affordability and Availability

The issue of assistive devices (e.g.. wheelchairs) inolves aspects such as affordability, availability of financial assistance. cost of services and repair. cost of rental, and price. Six related survey items were chosen by consumers and responded to by 6.355 people with disabilities in 6 different surveys. The issues received consistently high importance ratings, an average of 80 percent, and relatively low satisfaction ratings, an average of 42 percent. Consumer Idennfied Dimensions: •Assistive devices, such as wheelchairs. are very expensive. people with disabilities do not have enough money to purchase devices. • Rental of assistive devices is almost nonexistent. If rental is possible, consumers don't know where to go or get needed information.

Most

• Medicaid and Medicare do not cover all assistive devices. Consumer-Generated Alternatives:

• Change legislation regarding Medicaid and Medicare to cover purchase and repair of assistive devices.

Commercial Services: Accessibility The issue of accessibility of businesses. particularly public restrooms, has been selected as a problem in three different surveys. Two related survey items were responded to by 299 consumers. The issues were rated with an average impor tance of 87 percent and an average satis

faction rating of 47 percent. Consumer Identified Dimensions:

In many businesses and restaurants. the restrooms are inaccessible. • The restroom doors are too hard to push, and the stalls are too narrow. Consumer-Generated Alternatives:

Make a list of accessible and responsive businesses.

• Survey businesses and provide feedback and suggessons.

• Write letters to local businesses about upgrading facilities.

• Consumers should keep informed about and review access plans and permits for new construction in the community.

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 Identified Dimensions:

• Disabled people do not get the same
discounts and shopping privileges as
senior citizens. Most disabled people
are on a very low fixed income.
Consumer-Generated Alternanves:
• Independent living centers can sell
discount cards to consumers for use
with participating merchants, as was
done by Westside CTL in Los Angeles.
• Have a group of disabled people dis-
cuss a proposal with local merchants.

Community Support and
Responsiveness

This category includes issues related to
family, community, and government
support in meeting the needs of per-
sons with disabilities. Five somewhat
related items were chosen by 1.914
consumers in six surveys. They re-
ceived consistently high importance
ratings, with an average of 36 percent.
and relatively low sansfaction ratings.
with an average of 46 percent.
Consumer-identified Dimensions:
• Families and communities do not
encourage disabled members to be in-
dependent.

• The community does not provide opportunities or assistance for disabled

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people to live independently.

There are not enough support groups available for people with disabilities and their families.

• Sexuality counseling for people with disabilites is not available. • Local governments are unresponsive to disability issues, especially if solutions cost money. For example. disabled citizens are discouraged from registering and voting by inaccessible registration sites, polling places, and lack of transportation.

Consumer-Generated Alternatives:

• 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 their families in church activities.

• Use local media to feature stories about including people with disabilities in community activities.

Ask city councils for help in organizing programs that will encourage independence for disabled people and their families.

• Independent living centers should provide training for their staff counselors in sexuality counseling or bring in professional counselors for a workshop and provide materials.

• Consumer groups should represent themselves at city council and county court meetings, become familiar with city budgets, and advocate for funds for access improvements and disability programs.

•Consumer groups should encourage and assist disabled citizens to register

[blocks in formation]

• People with disabilities are unaware of their legal rights.

• Most people with disabilities are unaware of what pending legislation at state and national levels they should support or oppose.

• People with disabilities need training
in forming advocacy organizations.
Consumer-Generated Alternatives:
• Professionals and independent living
centers can foster local and state leader-
ship within the disabled community.
• People with disabilities need to in-
form themselves and attend 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 identified issues and con-
nect with state and national groups.
• Training in advocacy skills should
be provided.

Employment Accommodations,
Disincentives, and Training

Five survey items related to job accommodations in the workplace, work disincentives, and quality of job assistance and training programs were identified by 9.118 consumers as relative problems in six surveys. They received an average importance rating of 83 percent and an average sausfaction raung of 42 percent.

Consumer-Identified Dimensions:

• Many businesses do not provide reasonable accommodations in the workplace.

• Work disincentives still exist within the social security system. In addition to loss of economic benefits are losses or reductions in medical benefits. housing subsidies, food stamps, artendant services, etc.

• Disabled job hunters lack basic jobseeking skills and are unaware of incentives to employers and laws prohibiting discrimination.

• Blind people have lost their tax credit: other disability groups were never eligible.

• People with disabilities do not know where to go for job training or assistance in finding a job. Consumer-Generated Alternatives:

• Consumer groups need to form a coalition to lobby legislators at federal and state levels for tax credits.

• VR could offer training in job-seeking skills.

• Consumer groups should develop guidelines on what constitutes reasonable accommodanon in the workplace • Disseminate information about where to go for job training skills and job-related assistance.

Employment Discrimination

Two survey items related to job discrimination were identified by 9.314 consumers as top problems in eight surveys. They received an average impor tance rating of 86 percent and an average satisfaction rating of 41 percent. Consumer-Identified Dimensions:

• People with disabilites are discrimanated against because of their disability • Qualified disabled individuals are not given the same opportunity as nondisabled people.

Consumer-Generated Alternanves:

• Consumers need to teach disabled job seekers about proper attitudes and how to develop a businesslike demeanor when dealing with a potential employer. Disabled people must sell an employer on their abilities and not rely on sympathy.

• If a specific employer is perceived as insensitive, invite a representative of that company to speak to a disability group about employment.

• Independent living centers and advocacy groups need to encourage and assist disabled job applicants and employees to enforce laws and regulations prohibiting discrimination.

• Disabled individuals can contact the Job Accommodations Network or similar resources for help in locauing jobs and training, marketing themselves to prospective employers, and obtaining reasonable accommodation.

Employment Opportunities Two survey items related to employment opportunities were identified by 9.412 consumers as relative problems in II surveys. They received an average importance rating of 84 percent and an average satisfaction rating of 40 percent.

Consumer-Identified Dimensions:

• Job opportunities for people with disabilities are very limited.

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

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job, employers prefer to hure the nondisabled person.

Consumer-Generated Alternatives:

• Consumers should educate employers in tax credits, reasonable accommodation, and advantages of huning disabled employees.

• Disability groups must keep a coalibon going at the nabonal level to lobby for reduction of work disincenaves. • Job placement people should know which employers routinely hire disabled applicants.

• Use publicity to inform the community about job needs, interests, and capacities of disabled people. similar 10 TV spots from Job Service on spe. cific jobs.

• Talk with industries to design programs for people with disabilities simslar to programs designed for immig.

rants.

Handicapped Parking

One survey item related to the issue of enforcement of parking ordinances was idenufied as a major problem by 8.607 people in 13 surveys. The item received an average importance rating of 83 percent and an average satisfaction rating of 41 percent. Consumer-Identified Dimensions: • There are not enough handicapped parking places close to shopping and workplaces.

• Many spaces are not wide enough to unload wheelchairs or put down van lifts.

• Some spaces are not well-marked with an upright sign.

Police do not ticket violators as often as they should.

• Courts are lax in enforcing handicapped parking laws.

Consumer-Generated Alternanves: • Review local statutes; seek state unformity. Include private as well as public zones.

• Ask local mayors to publicize local ordinances.

• Consumer groups can conduct public awareness campaigns and lenerwriting campaigns to local officials. • Develop rapport with several police officers to assure better enforcement. • Conduct study session with police courts, and consumer groups to promote enforcement.

• Consumers can monitor violations

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and use data to advocate for compliance.

• Consumers can discuss parking problems with merchants where they shop.

• Consumer groups can distribute stickers to violators.

• Consumers can attend city council meetings and voice concerns to get adequate legislation.

• Consumers can advise businesses about adequate spaces and upright signs.

• Consumer groups can patronize businesses who provide and enforce handicapped spaces.

• Publicize how to get parking IDs. • Increase fines to over $25 to put teeth into the law.

• Form coalitions among groups need. ing access and parking.

• Provide consumer consultation in design of spaces.

• Put parking places on end of row for van lifts. In Anderson. IN. violators get a "candid camera" treatment. In a cooperative effort between local consumers 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 deputized local disabled consumers to ticket handicapped parking violators. paying their salaries from fines.

Health Care: Affordability and Availability

Six survey items were selected relevant to the availability and affordability of health care, including whether hospitals accept Medicaid and Medicare, regulations for Medicaid and Medicare. and sensitivity of health care providers to consumers. Items were identified as relative problems by 3.485 consumers in seven surveys. They received an average importance rating of 88 percent and an average satisfaction rating of 48 percent. Consumer Identified Dimensions:

Increasing numbers of doctors are refusing to take Medicaid or Medicare. because payment is very late and in

consistent.

• There is no respite care for families caring for disabled and elderly family members.

People with disabilities often cannot

afford regular, nonemergency medical care and medications.

• Transportation to medical appoint. ments is difficult, especially regular long-distance transportation, and transportation for rural citizens who go to large cities for dialysis or cancer treat

ment.

• Medical professionals are often insensitive in dealing with disabled patients, preferring to deal with famuly members rather than communicate directly with the disabled pauent as a responsible 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 often unaware 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 attendant care. If no state attendant care program is available (Wyoming has no Medicaid waiver or state-funded program), there is no paid attendant care for low-income disabled consumers. They must depend on family and friends or live in nursing homes. Consumer-Generated Alternanves:

Use local media to describe health problems of people with disabilides and solicit suggestions to solve these problems.

• Organize local volunteers, church. and civic groups for medical transpor

Lanon.

• Consumer groups should educate medical professionals about the special needs of disabled patients. The Associ abon for Retarded Citizens does this

for people with developmental disabilities.

• Invite medical professionals to speak to meetings of consumers to increase their own sensitivity and educate consumers at the same time. • Provide inservice training for medi.

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