Common Concerns of Disabled Americans: Issues and Options by Yolanda Suarez de Balcazar, Barbara Bradford, and Stephen B. Fawcett 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 con bution to society can be attributed both to personal competence and to the strengths of those communities that foster and support attempts to live independently. 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 problems in communities that limit independence. It also provides alternatives for action from the perspective of people with disabilities. It summarizes quantitative data from nearly 13.000 people with disabilities in 319 communities 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 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 state. Sponsoring organizations included independent living centers, state vocational rehabilitation 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 BARBARA BRADFORD is training associate at 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 development. This article is adapted from a Research and Training Center publication. 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 generating 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 problem. 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) involves 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 Identified Dimensions: •Assistive devices, such as wheelchairs, are very expensive. Most 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. • 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 is sues were rated with an average importance 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 suggestions. • 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 rating of 82 percent and a satisfaction rating of 35 percent. Consumer-Identified Dimensions: • Disabled people do not get the same Community Support and This category includes issues related to • The community does not provide opportunities or assistance for disabled 30 SOCIAL POLICY 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 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 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 • 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 leadership within the disabled community. • People with disabilities need to inform themselves and attend advocacy meetings at all levels, get on mailing lists for disability groups involved in legislation, and obtain names, addresses, and numbers of elected officials. • Disabled consumers should organize locally around identified issues and connect with state and national groups. • Training in advocacy skills should be provided. Employment Accommodations, 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 in professional counselors for a work-an average importance rating of 83 pershop 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 to vole. • Use the American Civil Liberties Union to enforce exisung access and registration laws. Disability Rights and Advocacy Issues related to involving disabled citizens in advocacy activities, increasing their knowledge about their rights, and training in self-advocacy were selected in four different surveys. Three selated questions were chosen by 2,430 people with disabilities. They received an average importance rating of 88 percent and an average satisfaction rating of 45 per cent. Consumer-Identified Dimensions: FALL 1988 cent and an average sausfaction rating 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 Dever 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 disabilities are discrimi nated against because of their disability. • Qualified disabled individuals are not given the same opportunity as nondisabled people. Consumer-Generated Alternatives: • 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 locating 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 11 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 31 job, employers prefer to hire the nondisabled person. Consumer-Generated Alternatives: • Consumers should educate employers in tax credits, reasonable accommodation, and advantages of hinng disabled employees. • Disability groups must keep a coali tion going at the nabonal level to lobby for reduction of work disincentives. • 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 to TV spots from Job Service on specific jobs. • Talk with industries to design programs for people with disabilities similar to programs designed for immug. 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 Alternatives: • 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 beter enforcement. • Conduct study session with police® courts, and consumer groups to pro-. mote enforcement. • Consumers can monitor violations! 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 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 treatment. • Medical professionals are often insensitive in dealing with disabled patients, prefering to deal with famuly members rather than communicate directly with the disabled patient as a responsible adult. • Medical professionals are often unaware of special medical or physical assistance needs imposed by a disability. Thus, discomfort and temporary setbacks 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 Alternatives: problems of people with disabilites and solicit suggestions to solve these problems. Six survey items were selected relevant to the availability and affordability of health care, including whether hospitals accept Medicaid and Medi-⚫ Use local media to describe health care, 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-Idensified 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 Organize local volunteers, church. and civic groups for medical transporLanion. • Consumer groups should educate medical professionals about the special needs of disabled patients. The Associ ation 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 SOCIAL POLICY cal professionals in the dignified. courteous treatment of persons with disabilities. This should be conducted by consumer groups and consumer-run agencies. • Provide education to consumers in how they can advocate for themselves with health care providers. • Form coalitions with other consumer groups to work on common health care objectives. • Form a protection and advocacy or ganization to help disabled patients in cases of unfair treatment by health care providers. professionals • Educate medical about treating different disabilities as part of medical and nursing school curricula. • Use mutual support groups, counselors, and self-education to encourage good medical habits, nutrition, exercise, and prevention of illness. • Locate sources of health care for persons with disabilities; make a directory of these resources. • Arrange local medical fitness centers for people with disabilities. Provide outreach to commercial fitness centers and provide transportation to them for people with disabilities. • Place people with disabilities as employees of health care providers (i.e.. as social workers and patient advocates). • Involve independent living centers in training and advocacy. • Consumer groups at the state level could conduct a survey of health care facilities that covers disabilities served. access to offices and parking. acceptance of Medicaid and Medicare. and sources for financial assistance. This could be conducted through state medical and dental societies and updated periodically. • Educate consumers about medical aspects of their own disabilities. Train them to advocate for themselves with medical professionals, and teach them to take personal responsibility for educating health care providers about their own appropriate treatment and needs. • Write government and elected officials about health care issues. • Antend city council meetings, and petition for city funds to help with medical expenses. FALL 1988 • Seek establishment of adult day care and home health services. Develop directory of doctors who accept Medicaid and Medicare payments for treatment of people with disabilities. • Provide toll-free legal advice about legal matters relating to nonacceptance 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 ar rangements with shared attendant care for those who need help. • Consumer groups need to present need for attendant care and cost effectiveness data to state legislature. • Support national groups lobbying for national attendant care programs. Housing Affordability, Availability, and Accessibility 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 importance rating of 86 percent and an average satisfaction rating of 37 per cent. Consumer-Identified Dimensions: • There is an extreme shortage of accessible, affordable housing for people with disabilities. • Eligibility requirements and regulations 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 require 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-Generated Alternatives: • 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 city officials on housing needs of people with disabilities. •Local consumer groups can bring complaints to local housing authontes • Consumers can be educated to be aware of tenant rights and raise money to finance suits when necessary. Disabled residents should become familiar with codes, where to file complaints where codes don't exist, and how to introduce legislation. • Groups can obtain 202 and other HUD loans for accessible housing and manage the housing units themselves. • Examine eligibility requirements for subsidized housing; use net, not gross income. • A consumer group in Los Angeles located two HUD projects in good neighborhoods; the Telephone Pioneers donated money and labor to upgrade the structure. • Establish subsidized housing administered by occupants. Provide income subsidy within housing cooperanves. • Some communities in Minnesota provide vouchers to subsidize rent for housing anywhere in the community. • Establish a referral network for accessible, affordable housing. • Enforce existing laws setting aside a certain number of units for people with disabilities. • Consumers need to educate building professionals and make information available. • Advocate for statewide legislation to encourage adaptability of units. • Consumers need to lobby elected officials on lack of accessible housing. • Disabled community members need to get on housing boards. • Educate disabled homeowners about programs to help modify their homes for access and safety. Insurance for Auto, Life, and This issue refers to the availability and affordability of auto, life, and liability insurance for people with disabilities. This item was selected as a major problem by 2.355 people completing two surveys. It received an average importance rating of 89 percent and an average satisfaction rating of 35 percent Consumer-Identified Dimensions: ● Insurance premiums are more expensive for people with disabilities. 333 |