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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.

• Educate medical professionals 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 direc tory of these resources.

• Arrange local medical fitness cen. ters 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.

• Anend city council meetings, and petition for city funds to help with medical expenses.

FALL 1983

• 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 Alternanves:

• 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 authonbes • 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 admirustered by occupants. Provide income subsidy within housing cooperatives.

• 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 avulable.

• 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
Liability

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 sausfaction rating of 35 percent Consumer-Identified Dimensions:

• Insurance premiums are more expensive for people with disabilities.

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• Insurance companies discriminate based on disability.

Consumer Generated Alternatives:

• Have a group of disabled people discuss possible solutions with insurance companies regarding adequate prices.

lasurance for Health Care

One survey question related to the affordability of health insurance was identified as a problem by 5.624 consumers in two surveys. It received an average importance 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 therapies used by disabled consumers.

• Inability to purchase individual health insurance and exclusion from some group policies are senous disincentives to individuals with disabilities looking for work.

Consumer-Generated Alternatives: • 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 disabilites and pre-existing conditions can get group insurance. • Educate consumers about supplemental insurance available through groups such as AARP, professional associations, and credit card holders.

• Publicize the fact that laws in some states (such as Missoun and Kansas) prohibit insurance companies from discriminating 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.

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Media Portrayal and Public
Information

Three survey items related to media portrayal of people with disabilities and their access to information about services, benefits, and programs were selected as problems by 7.547 consumers in three surveys. The items received an average importance rating of 81 percent and an average satisfaction rating of 39 percent.

Consumer Idennfied Dimensions:

• The media do not provide enough information about what is available for disabled citizens.

• The media portray people with disabilities in a negative and unrealistic way, preferring the sensational or piaful to the everyday and human side of disability.

Consumer-Generated Alternatives:

• Consumer groups should bring acIcessibility and independent-living issues 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.

Public Access

Issues related to safe access to public places, including availability of curb 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 per

cent.

Consumer-Idennfied Dimensions:

• Disabled citizens are forced to stay home or use the street, because curb cuts and sidewalks are absent or inadequate, or in some instances, snow is not removed promptly.

• 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 accessi. ble.

• Make up an annual prionty list of access and safety issues.

• Describe problems in newsletters and solicit opinions from other disabled community members.

Offer modification assistance to owners of inaccessible buildings and appropriate government and social agencies.

• Offer assistance to government agencies on ways to increase the safery of streets and sidewalks.

Social Services

Four survey items related to informa. tion social agencies provide to consumers 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 average importance rating of 88 percent and an average satisfaction rating of St percent.

Consumer Idennfied Dimensions:

• Social service agencies fail to inform disabled consumers about all services available to them through their own agency, other agencies, or the community.

• Benefits or services from one 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 one agency to another, often encountening agencies unable to serve them or refusing services.

• Forms and policies of social service agencies are confusing.

Consumer-Generated Alternatives:

• Organize a consurner group to review forms used by social service agencies.

• Form a consumer network for infor mation and referral.

• Create more support groups for mutual assistance.

• Provide corrective feedback and information to social service agencies that fail to inform clients about benefits to disabled consumers.

• Provide social service agencies with training on benefits available to disabled consumers.

• Consumers should demand that VR cases be reopened, if they have not been fully informed about all benefits

SOCIAL POLICY

available.

• Independent living centers should train consumers in what benefits are available and how to access them effecuvely.

• Independent living centers or consumer groups could organize regular cooperanve meetings involving representanves of all social service agencies in the community, or if such an organi. zation exists, become active and advocale for services to people with disabilities.

• If consumers are referred to an agency unable to serve them, they should contact the referring agency and tell them the referral was inappropriate and why.

• Educate consumers to use the state CAP agency. Legal Aid, and other available legal help when services are unjustly refused.

• Set up courses in self-reliance that teach consumers to use social services such as the one used by the CTL in Anaheim, Calif.

Transportation: Availability and
Affordability

Three survey items related to the availability and affordability of accessible transportation services were identified as major problems by 4.008 consumers in nine surveys. They received an average importance rating of 83 percent and an average satisfaction rating of 10 percent.

Consumer Identified Dimensions: • Disabled citizens are segregated from the rest of the community and forced to remain at home because of lack of transportation.

• In most areas, public transportation is not wheelchair-accessible, and paratransit is expensive or nonexistent. In rural areas, accessible transportation is available infrequently.

• Lack of transportation is the primary barrier to community participa. tion, education, employment, recreation, adequate medical care, and independent living for people with disabilites.

• Weekend and evening transportation is a problem.

• Transportation between neighboring cities and from rural areas to cities is a problem.

Ideally, a city should have accessi

FALL 1988

ble mainline transportation for those who can use it and paratransit for those who need it.

• Recreational events and facilities are sometimes inaccessible. Transportation to recreabonal events is unavailable. Consumer-Generated Alternatives:

• Consumer groups need to work with existing community recreational facilities to make them accessible and usable for people with disabilities. • Contact organizers of recreational events for transportation for disabled participants.

•People with disabilities need to be. come involved in the planning of community recreational events and active in interest groups.

• Form a local task force on transportation, decide what local consumers need and want, then fight for it.

It is against federal law for paratransit to cost more than mainline transportation. Educate consumers about this law, how to make complaints, and how to ensure its enforcement.

• Develop a share-a-fare system as they did in Kansas City, MO, where 900 wheelchair users a month participate.

• Give testimony to state legislatures on transportation funding.

• Have lift buses operate at fixed rates and schedules as they do in Denver, a city with almost 100 percent accessible buses.

• Slow transit schedules to accommodate disabled riders. Drivers should call out stops ahead of time.

• Include disabled drivers in existing driver training programs.

Develop car pools.

• Conduct public education on varied modes of transportation needed by disabled citizens.

• Submit formal complaints to transportation authorities concerning mainline wheelchair-accessible buses. • Develop creative rural and small city alternatives. Examples include merging existing systems serving disabled riders (Morgantown, WV.). ownership of a lift van by a consumer group or cooperative (Cuba, MO), and use of idle church or school lift-equipped buses.

Utility Bills

One survey question related to the af

fordability of utility bills was identified as a major problem in four surveys. A total of 1.611 consumers answered this survey item, with an av erage importance rating of 89 percent and an average satisfaction rating of 34 percent.

Consumer Identified Dimensions

• Disabled consumers on a fixed income cannot afford inconsistent and high utility bills.

• Because of their medical needs. many disabled consumers cannot survive without water, gas for heat, and electricity to operate their equipment. Consumer Generated Alternatives: • Obtain help to establish programs for weathenzation.

• Encourage landlords to weatherize units.

Educate landlords and disabled homeowners about tax credits for weathenzing and solar installation. • Encourage consumers to join annualized leve! payment plans.

• Consumer groups should maintain a list of agencies that help pay utility bills.

• Call local consumer affairs office for help if utilities are shut off. • Consult local phone company about discounts for disabled consumers. • Wnte elected officials describing problems with utility bills and ask for legislative solutions and assistance programs.

This report represents the comments and suggestions of thousands of Americans with disabilities. They have identified specific community features that inhibit independent living, including inadequate job opportunities, job discrimination, insufficient accessible and affordable housing, inaccessible public places, and unavailable and unaffordable service options. These community problems are counterproductive to achieving society's goal of independence.

The common concerns outlined here frame an agenda for public, private, and self-help initiatives. These consumer generated altemanves feature many practical steps that can be taken at local. state, and national levels. Taken to gether, these issues and options pose a challenge to all who believe that justice requires equal opportunities to achieve independence.

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Common Concerns of Disabled Americans: Issues and Options

Yolanda Suarez de Balcazar
Barbara Bradford

&

Stephen B. Fawcett

This publication was prepared by
The Research and Training Center on Independent Living

at the University of Kansas

3111 Haworth-BCR Lawrence, Kansas 66045 (913) 864-4095

Second Edition
April, 1989

Funds for this publication were provided, in part, by a grant to the University of Kansas from the National Institute on Disability and Rehabilitation Research (NIDRR) Grant No. G008006928

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Assistive Devices: Affordability and Availability.
Commercial Services: Accessibility. . . . .

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Commercial Services: Availability of Discounts.
Community Support and Responsiveness.
Disability Rights and Advocacy.

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Education...

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Employment Accommodations, Disincentives, and Training.
Employment Discrimination.

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Social Services and Benefits..

Transportation: Availability and Affordability.
Utility Bills...

Summary Comments.

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Appendix 1 Concerns Report Ratings and Formulas....

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Appendix 2 Demographic Profile of Respondents...

Appendix 3 Consumer Ratings of Importance and
Satisfaction by Concerns Category, Survey
Question, and Community or State...

Acknowledgments...

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