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The hallmark value of the disabilities nghis and independent living move. ments is the assurance of equal access 10 all activities society offers, both work and leisure related. Over 30 mil. lion people with disabilities accept re. sponsibility for their work, family, and individual lives. Their substantial contnbution to society can be attributed both to personal competence and to the strengths of those communities that foster and support attempts to live in. dependently. However, there are still many physical and social barriers 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 oudines the major proba lems in communities that limit inde. pendence. It also provides alternatives for action from the perspective of people with disabilities. Il summarizes quanoradve data from nearly 13.000; people with disabilities in 319 communities in 10 scales and provides qual-! itative information about the issues and." options they identified during local lown meetings and public forums. This compendium presents common concems of people with disabilities and their insights into what actions would help assure equality of opportunity.
Questionnaires were administered to all identified citizens with disabilities in the local community or stale. Spon. soring organizations included independent living centers, stale vocational re. habilitation agencies, and consumer advisory committees. Average scores for importance and satisfaction were used to identify relative strengths (i.e., items of high importance and high satisfaction) and possible problems (i.e., items of high importance and low satisfaction). Finally, qualitative
YOLANDA SUAREZ DE BALCAZAR is research associate and RARBARA BRADFORD is training associak ai the Research and Training Center on Inde. penitens Living, Universiry of Kansas, where STEPHEN 8. FAWCETT is re. search associace and professor in the department of human development. This arrick is adapled from a Research and Training Center publication.
information was obtained when the re.
MAJOR PROBLEMS IDENTITED
faction rating of 47 percent.
Assistive Devices: Affordability
very expensive. Most
Commercial Services: Availability of
Community Support and
Commercial Services: Accessibility
• VR could offer traning in job-seeding skills. • Consumer groups should develop guidelines on what constituies reason. able accommodanon in the workplace. • Disseminate information about where to go for job training skills and job-re. lated assistance.
• Poople with disabilities are unaware of their legal rights. • Most people with disabilities are un. aware of what pending legislation at state and national levels they should support or oppose. • Poople with disabilioes need training in forming advocacy organizations. Consumer-Gencraved Aluemarives: • Professionals and independent living enters can foster local and state leadership within the disabled community. • People with disabilities need to inform themselves and attend 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 around idenofied issues and connect with state and national groups. • Training in advocacy skills should be provided.
people to live independendy. • There are Dot enough support poups available for people with disabilities and theu families. • Sexuality counseling for people with disabilioes is not available. • Local governments are unrespon. sive to disability issues, especially if solutions cost money. For example, disabled citizens are discouraged from registering and vooing by inaccessible registration sites, polling places, and lack of transportation. Consumer-Generased Alkmanives: • Encourage community groups to organize 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 acdivides • Use local media to feature stories about including people with disabilities 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 workshop and provide materials. • Consumer groups should represent themselves a 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 to vote. • Use the American Civil Liberties Union to enforce existing access and registracion laws. Disability Rights and Advocacy Issues related to involving disabled ciozens in advocacy activities, increasing toeir bowledge about their rights, and training in relf-advocacy were selected in fow didarent surveys. Three xlated questions were chosen by 2.430 people with disabilities. They received an average importance rating of 88 percent and an average satisfaction rasing of 45 per cent. Consumer-Identified Dimensions:
Employment Accommodations, Disinceptives, and Training Five survey items related to job ac. commodations 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 per. cent and an average satisfaction rating of 42 percent. Consumer-Idennified 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, antendant services, etc. • Disabled job hunters lack basic job seeking skills and are unaware of incentives to employers and laws pro hibiting discrimination. • Blind people have lost their cax credit; ocher 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 co alition to lobby legislators at federal and state levels for tax credits.
Employmeot Discrimination Two survey items related to job discrimination were identified by 9.314 consumers as lop problems in eight surveys. They roceived an average impor. ance rating of 86 percent and an aver. age satisfaction rating of 41 percent. Consumer-Identified Dimensions: • poople with disabilities are discrimi. nated against because of their disability. • Qualified disabled individuals are not given the same opportunity as nondisabled people. Consumer-Generated Aiemasives: • Consumers need to teach disabled job seekers about proper attitudes and how to develop a businesslike de. meanor 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 em. ployees to enforce laws and regulations prohibiting discrimination. • Disabled individuals can contact the Job Accommodations Nerwork or similar resources for help in locating jobs and training, marketing them. selves 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 11 surveys. They received an average importance racing of 84 percent and an average satisfaction racing of 40 percent. Consumer Identified Dimensions: • Job opportunities for people with disabilities are very limited. • If there is a nondisabled person and i disabled individual applying for a job. employers prefer to hire the nondisabled person. Conswner.Generased Alternatives: • Consumers should educate employ. ers in tai credits, reasonable accommodation, and advantages of hining disabled employees. • Disability groups must keep a coaljdon going at the nabonal level to lobby for reduction of work disincengves. • Job placement people should know which employers routinely hire disabled applicants • C'se publicity to inform the community about job needs, interests, and capacities of disabled people, similar 10 TV spols from Job Service on spe. cific jobs. • Talk with industries to design pro grams for people with disabilities similas to programs designed for immig. rants .
and use dau to advocate for compliance • Consumers can discuss parting problems with merchants where they shop. • Consumer groups can disonbute stickers to violators. • Consumers can attend city council meetings and voice concems 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 berween 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 de. putized local disabled consumers to ticket handicapped parking violators, paying their salaries from fines.
Handicapped Parking One survey itcm 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 satisfac. tion rating of 41 percent. Consumer-Idennfied 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 oñen as they should. • Courts are lax in enforcing handicapped parking laws. Consumer-Generased Altemarives: • Review local statutes: seek state uniformity. Include private as well as public zones. • Ask local mayors to publicize local ordinances. • Consumer groups can conduct pub lic awareness campaigns and lenerwriting campaigns to local officials. • Develop rapport with several police officers to assure bence enforcement. • Conduct study session with police, courts, and consumer groups to pro moue enforcemeor. • Consumers can monitor violations
afford regular, noncmergency medical care and medications. • Transportation to medical appointmenis is difficult, especially regulas long-distance transportation, and transportation for rural ciüzens who go to large cities for dialysis or cancer treatment. • Medical professionals are often insensitive in dealing with disabled patients, prefeming to deal with family members rather than communicate directly with the disabled patient 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 selo backs can result or even life-threaten. ing situations. • The general public is unaware that existing programs do not provide adequate medical care for people with disabilities. • Disabled consumers are often unawart 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 car: program is available (Wyoming has no Medicad 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 Alternatives: • 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 tarion. • Consumer groups should educate medical professionals about the special needs of disabled patients. The Association for Retarded Citizens does this for people with developmental disabilities. • Invite medical professionals 10 speak to meetings of consumers to increase their own sensitivity and educate consumers at the same time. • Provide inservice training for medi
Health Care: Affordability aod Availability Six survey items were selected relevant to the availability and affordability of health care, including whether hospitals accepe Medicaid and Medicare, regulations for Medicaid and Medicare, and sensitivity of health care providers to consumers. Items were identified as relacive 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. Conswner.ldenafied Dimensions: •. Increasing numbers of doctors are refusing to take Medicaid or Medicare, because payment is very late and inconsistent. • There is no respite care for families caring for disabled and elderly family members. • People with disabilities often cannot
• Seek establishment of adult day cure and home health services. De. velop directory of doctors who accepi Medicaid and Medicare payments for treatment of people with disabilities, • Provide toll-free legal advice about legal matters relating to nonacceplance of Medicaid and Medicare or refusal of treatment to disabled consumers. • Advocate for program changes to facilitate more timely and consistent payment of Medicaid and Medicare. • Advocate for cooperative living as rangements with shared attendant care for those who need help. • Consumer groups need to present need for attendant care and cost effecgiveness data to state legislature. • Support national groups lobbying for national anendant care programs.
Housing Affordability, Availability, Rod Acressibility Six survey items related to the afforda. bility, availability, and accessibility of housing have been identified as major problems by 4,127 consumers in 12 surveys. They received an average im. portance rating of 86 percent and an average satisfaction rating of 37 per. cent. Consumer-Identified Dimensions: • There is an extreme shonage of accessible, affordable housing for people with disabilities, • Eligibility requirements and regula. tions keep some disabled consumers, especially the nonelderly who live with family members or attendants. from living in public or subsidized housing. • Builders do not comply with existing laws, where laws exist, that re. quire a certain percentage of accessible units. • Builders are unaware of laws, access codes, and modifications necessary for accessibility. • Managers and directors of public housing are unaware of, and often indifferent to the needs of disabled tenants. Consumer-Generased Altemarives: • Talk to owners if the manager is uncooperative. • Disabled and low-income people should lobby social service agencies for housing assistance. • Disabled consumers should educate • Make up an annual prionty list of access and safety issues. • Describe problems in newsleners and solicit opinions from other disabled community members. • Offer modification assistance to owners of inaccessible buddings and appropriate government and social agencies. • Offer assistance to government agencies on ways to increase the safety of streets and sidewalls.
cal professionals in the dignified.
city officials on housing needs of
Insurance for Auto, Lite, and
Medla Portrool and Publike Inbrmmadoa Three survey items related to media portrayal of people with disabilities and their access to information about services, benefics, and programs were selected as problems by 7.547 consumers in three surveys. The items re. ceived an average importance rating of 81 percent and an average satisfaction rating of 39 percent. Consumer-idennfied Dimensions: • The media do noi provide enough informauon about what is available for disabled ciuizens. • The media portray people with disabilities in a negative and unrealistic way, preferring the sensational or pici. ful to the everyday and human side of disability. Consumer-Generated Alternatives: • Consumer groups should bring ac. cessibility and independeni-living is. sues to the attention of the press. • Consumers should monitor coverage of disability issues. • Consumers should educate the media to correct negative portrayals and terminology. • Consumer groups should meet with service providers about developing a directory of services and programs for people with disabilities that could be disseminated through the media.
• Insurance companies discriminate based on disability, Consumer. Generaled Allemanves: • Have a group of disabled people discuss possible solutions with insurance companies regarding adequate pnces.
lasurance for Health Care One survey question related to the af. fordability of health insurance was identified as a problem by 5.624 con. sumers in two surveys. It received an average imponance rating of 86 percent and an average satisfaction rating of 38 percent. Consumer Identified Dimensions: • Disabled consumers cannot buy health insurance because of their disa bility and'or pre existing conditions. • Disabled consumers cannot afford health insurance. • Health insurance often does not cover supplies, equipment, regular medications, or therapics used by disabled consumers. • Inability to purchase individual health insurance and exclusion from some group policies are serious disincentives to individuals with disabilities looking for work. Consumer-Generaled Alte motives: • Consumer groups can advocate for national health insurance. • Disabled consumers can set up health insurance cooperatives as they did in Los Angeles. • Shared risk insurance is an option so consumers with disabilides and pre existing conditions can get group insurance. • Educale consumers about supplemental insurance available through groups such as AARP, professional associations, and credit card holders. • Publicize the fact that laws in some slates (such as Missouri and Kansas) prohibit insurance companies from discominating against persons with disabilities. • Independent living centers can train and assist consumers in filling out forms, challenge actions and policies of Medicaid, Medicare, and insurance companies, and assist in advocacy, complaints, and appeals processes. • Get information from and make use of the state insurance commissioner's office.
Public Access Issues related to safe access to public places, including availability of curd cuts, accessible entrances, and snow removal, have been selected as major problems. Two related survey items were chosen by 204 consumers in two different surveys, with an average importance rating of 81 percent and an average satisfaction rating of 48 percent. Consumer-Idennified Dimensions: • Disabled citizens are forced to stay home or use the street, because curt cuts and sidewalks are absent or inadequate, or in some instances, snow is not removed prompuy. • Many public buildings are totally inaccessible or technically accessible with inadequate or unsafe access. Consumer-Generated Alternatives: • Discuss among disabled consumers key areas that need to be made accessible.
Social Services Four survey items related to informa. lion social agencies provide to coosumers about services and legal issues were selected as major problems in six surveys. A total of 3.581 consumers responded to these questions, with an av. crage importance rating of 88 percent and an average satisfaction rating of SI percent. Consumer Idennfied Dimensions: • Social service agencies fail to inform disabled consumers about all ser. vices available to them through their own agency, other agencies, or the community • Benefits or services from agency can limit benefits or services from another agency. • Most social service agencies are unaware of services available at other agencies. • Disabled people are referred from onc agency to another, often encountering agencies unable to serve them or refusing services. • Forms and policies of social service agencies are confusing. Consumer-Generated Alternatives: • Organize a consumer group to review forms used by social service agencies. • Form a consumer network for information and referral. • Create more support groups for mutual assistance. • Provide corrective feedback and information to social service agencies that fail to inform clients about bene. fits to disabled consumers. • Provide social service agencies with training on benefits available so disabled consumers. • Consumers should demand that VR cases be reopened, if they have not been fully informed about all bencfics