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• Seek esublishment of adult day Car and home health services. De. velop directory of doctors who accepi Medicaud and Medicare Payments for treatment of people with disabilities. • Provide roll-free legal advice about legal maners relanng to nonacceptance of Medicaid and Medicare of refusal ol reatment to disabled consumers. • Advocate for program changes to facilitate more timely and consistent payment of Medicad and Medicare • Advocate for cooperative living as. rangements with shared attendant care for those who need help. • Consumer groups need to present need for anendant care and cost effec. Oveness data to state legislatur. • Support national groups lobbying for national anendant care programs.
Housing Affordability Availability, and Acressibility Sin survey items related to the afforda. bility, avalability, 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 raung of 37 percent. Consumer Idennified Dimensions: • There is an extreme shonage of 2. cessible, affordable housing for people with disabilities. • Eligibility requirements and regula. tions keep some disabled consumers. especially the nonelderly who live with family members or anendants, from living in public or subsidized housing • Builders do not comply with exist. ing laws, where laws exist. that re. quire a certain percenuage of accessible unius • Builders are unaware of laws. 25cess codes, and modifications neces. sary for xcessibility. • Managers and directors of public housing are unsware of, and ohen indifferent to the needs of disabled lenancs. 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
cal professionals in the dignified.
city officials on housing needs of
lasunare for Auto, Like, and
• Insurance companies disnminale based on disability. Consumer Gencraved Akemannes: • Have a group of disabled people dis. cuss possible soluuons with insurance companies regarding adequate pnces.
• Make up an annual prionry list of XCESS and safety issues.
Descnbe problems in newsleners and solict opinions from other dis. abled community members. • Otta modification assistaoce to owners or inaccessible buildings and appropriate government 100 socis agencies. • Offer assistance to government agencies on ways to increase the safety of streets and sidewalks.
lasurance for Healu Cine One suncy quesoon related to the af. fordabiliny of health insurance was identified as a problem by 5.634 con. sumers in two surveys. It received an average importance rating of 86 per cent and an average satisfaction rating of 38 percent. Consumer Idenned Dimensions: • Disabled consumers cannot buy health insurance because of their disa biliny 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. • Inabilir to purchase individual health insurance and exclusion from some poup policies are senous disincenoves to individuals with disabilioes looking for work. Consumer-Generated Alternatives: • Consumer groups can advocate for national health insurance. • Disabled consumers can set up health insurance cooperauves as they did in Los Angeles. • Shared nsk nsurance is an opoon so consumers with disabiliocs and pre crise ing condicons can get poup insurance. • Educate consumers about supple. menual insurance avalable through groups such as MARP. professional associations, and credit card holders. • Publicue the fact that laws in some suates (such as Missoun and Kansas) prohibit insurance companies from dis. chminating against persons with disabilities. • Independent living centers can train and assist consumers in filing out forms, challenge upons and policies of Medicaud. Medicare, and insurance companies, and assist in advocacy, complaines, and appeals processo. • Get information from and make use of the state insurance commissioner's office.
Medla Porunu nod Publik Inbradoo Three survey items related to media portrayal of people with disabilities and their access to informauon about services, benefics, and programs were selected as problems by 7.547 consum. en in three surveys. The items R. ceived an average importance rating of 81 percent and an average satisfaction rating of 39 percent. Consumer Idenned Dimensions: • The media do not provide enough information about what is avalable for disabled ciuzens. • The media portray people with dis. abilities in a negative and unrealisac way. prefemng the sensational or pici. ful to the everyday and human side of disability. Consumer-Generated Alternanives: • Consumer groups should bring ac. cessibility and indepenukent-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.
Public Access Issues related to safe access to public places, including availability or curt 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 imponance rating of 81 percent and an average sausfaction rating of 48 per cent. Consumer Idenafied Dimensions: • Disabled citizens are forced to stay home or use the screet, because cut cuts and sidewalks are absent or inadequak, or in some instances, snow is not removed prompuy. • Many public buildings are locally inaccessible of technically accessible with inadequate or unsafe access. Consumer.Gencraved Allemannes: • Discuss among disabled consumers key areas that need to be made accessible.
Social Services Four survey items related to informa. tion social agencies provide to coosumers about senices and legal issues were selected as major problems in six surveys. A total of 3.581 consumers re. sponded to these questions, with an av. erage importance racing ol 88 percent and an average satisfacnon rating of si percent. Consumer Idennhied Dimensions: • Social service agencies fail to inform disabled consumers about all services available to them through their own agency, other agencies, or the community.
Benefius or services from one agency can limit benerics or services from another agency. • Most social service agencies are un. aware of services available at other agencies. • Disabled people are referred from one agency to another, ohien encoun. kenng agencies unable to serve them or refusing services. • Forms and policies of social service agencies are confusing. Conswner-Generated Allemanives: • Organize a consurner group 10 R. View forms used by social service agencies. • Form a consumer nerwork for information and referral. • Create more support groups for mutual assistance. • Provide corrective feedbaca and in formauon to social service mencies that fail to inform clients about bene rics to disabled consumers. • Provide social service agencies wich training on benefits valable to disabled consumers. • Consumers should demand that VR cases be reopened, if they have not been fully informed about all benefits
fordability of utility bills was ickenofied as a major problem in four sur veys. A loul of 1.611 consumers answered this survey item, with an incrage importance raning of 89 percent and sa average sosfechon rating of 24 percent Consumer-ldkennpied Dimensions: • Disabled consumers on a fired income cannot afford inconsistent and high utility bills. • Because of their medical needs. many disabled consumers cannot sur. vive without water. gas for heat, and electricity to operove their equipment. Conswner-Generated Aliemanves: • Obtain help to establish programs for weathenzation. • Encourage landlords to weathenice unils • Educate landlords and disabled homeowners about a credits for weathenzing and solar insullation, • Encourage consumers to join innualized level payment plans. • Consumer groups should maintain a list of agencies that help pay utility bills. • Call local consumer leurs office for help of uulities are shut off. • Consult local phone company about discounts for disabled consumers. • Wnie elected officials de sending problems wich utility bills and ask for kegislative solutions and assistance programs.
This report represents the comments and suggestions of thousands of Amer icans with disabilities. They have idenofied specific community features that inhibui independent living. including inadequate job opportunities. job dis. crimination, insufficient accessible and fordable housing. inaccessible public places, and unavalable and unaffordable service opoons. These community problems are counterproducDve to achieving society's goal of inde. pendence.
The common concerns audined here frame an agenda for public. prvak. and self-help injoaoves. These consumer generated alemaoves feature many precocal steps that can be taken a boca. sease, and national levels. Taken la gether, these ispues and opoons pose a challenge to all who believe than jusoice requires equal opportundes to achieve independence. I
Transporiadoa: Availability and
ble mainline transportation for those
Common Concerns of Disabled Americans:
Issues and Options
Yolanda Suarez de Balcazar
Stephen B. Fawcett
This publication was prepared by
3111 Haworth-BCR Lawrence, Kansas 66045
Funds for this publication were provided in pars, by a grane to the University of Kansas from the National Instique on Disability and Rehabilitation Research (NIDRR) Grant No. G008006928
Assistive Devices: Affordability and Availability..
3 4 5 5 6 7 8 9 10 10 12
14 16 17 18 18 19 20 22
Appendix 3 Consumer Ratings of Importance and
Satisfaction by Concerns Category, Survey