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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 Medles Portaal nod Publike Inbradoo Three survey items relaied to media portrayal of people with disabilities and then access to information about services, benefius, and programs were selecred as problems by 7.547 consum. ens in three surveys. The items R. ceived an average importance rating of 81 percent and an average sausfaction rating of 39 percent. Consumer.Idannfied Dimensions: • The media do not provide enough information about what is avulable for disabled ciuzens. • The media portray people with disabilities in a negative and unrealisac way. prefemng the sensational or pia. ful to the everyday and human side of disability. Consumer-Generosed Alkemarives: • Consumer groups should bring a cessibility and indepenukent-living is. sues to the ancation of the press. • Consumers should monitor coverage of disability issues. • Consumers should educate the media to correct negative portrayals and terminology • Consumee 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.

cal professionals in the dignified.
couneous ousonene of persons with
disabilities. This should be conducted
by consumer poups and consumer-run
agencies.
• Provide educadon to consumers in
how they can advocate for themselves
mich health care providers.
• Forro coeliuons with other con-
sunes poups to work on common
health care objectives.
• Form prolanon and advocacy or
ganizanon to help disabled patients in
cases of unfair treatment by health care
providers.
• Educate medical professionals
about teaving different disabilities as
part of medical and nursing school cur.
nicula.
• Use mutual support groups. coun-
xlors, and sell education to encourage
good medical habils, nutrition, excr-
cise, and prevention of illness.
• Locate sources of health care for
persons with disabilities, make a direc.
cory of these resources.
• Arrange local medical fitness cen.
kers for people with disabilities. Pro-
vide outreach to commercial fitness
centers and provide transponation to
them for people with disabilities.
• Place people with disabilities as em-
ployees of health care providers (ie..
as social workers and patient advo.
cates).
• Involve independent living centers
in training and advocacy.
• Consumer proups at the state level
could conduct a survey of health care
facilities

Covers disabilities
krved. access 10 offices and parking.
acceptance of Medicaid and Medicare.
and sources for financial assistance.
This could be conducted through stake
medical and denial socienes and up
dared 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 offi-
cials about health care issues.
• Anend ciry council meetings. and
petition for city funds to help with
medical expenses.

city officials on housing needs of
people with disabilines.
• Local consumer poups can bring
complaints to local housing authondes
• Consumers can & educated to be
aware of tenant righus and raise money
to finance suits when necessary
• Disabled residents should become
familiar with codes, where to file com-
plains where codes don't exist. and
how to introduce legislation.
• Groups can obuin 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 neo HLD projects in good
Reighborhoods; the Telephone Poneers
donated money and labor to uderade
the structure.
• Establish subsidized housing admins.
Kered by occupants. Provide income sub
sady within housing cooperaoves.
• Some communities in Minnesou
provide vouchers to subsidize rent for
housing anywhere in the community
• Esuablish a referral network for ac-
cessible, affordable housing.
• Enforce existing laws senting aside a
cenain number of units for people with
disabilities.
• Consumers need to educate building
professionals and make information
avulable.
• Advocate for sutewide legislation
to encourage adapiability of units
• Consumers need to lobby elected of.
ficials on lack of accessible housing
• Disabled community members need
to get on housing boards.
• Educate disabled homeowners
about programs to help modity their
homes for access and safety

lasunare for Auto, Like, and
Liability
This issue refers to the availability and
uffordability of ato. life, and liability
insurance for people with disabilioes.
This item was selected as a major probe
kem by 2.355 people completing two
surveys. It received a average impor-
unce raong ol 89 percent and an aver.
age sosfaction rising of 35 percent
Consumer Idennhed Dimensions:
• Insurance premiums are more ex.
pensive for people with disabilities.

FALL 1998

Public Access Issues related to safe xcess to public places, including availability of curd cuts, accessible encances, 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 sausfaction rating of 48 per cent. Consumer-ldenafied Dimensions: • Disabled citizens are forced to stay home or use the sorzet, because curb cuts and sidewalks are absent or inadequate, or in some instances. snow is not removed prompuy. • Many public buildings are locally inaccessible of technically accessible with inadequate or unsafe access. Conswner-Generased Allemanues: • Discuss among disabled consumers key areas that need to be made accessible.

Insurance companies discrminale
based on disability
Consumer. Generosed Alkemarives:
• 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 newsletters
and solice opinions from ocher dis.
abled community members.
Offer modification Assistaoce 10
owners or inaccessible buddings and
appropriate government and social
agencies.
• Offer assistance to government
agencies on ways to increase the safety
of streets and sidewalks.

lasurance for Health Care
One suney quesoon related to the af.
fordability of health insurance was
identified as a problem by 5.624 con.
sumers in two surveys. It received an
werage importance rating of 86 pere
ceat and an average satisfaction rating
of 38 percent.
Consumer Idennfied 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 dis-
abled consumers.
• Inability 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 avocate for
national health insurance.
• Disabled consumers can set up
health insurance cooperauves as they
did in Los Angeles.
• Shared nsk insurance is an opoon so
consumers with disabiliocs and pre cristo
ing condoons can see youp insurance.

Educare consumers about supple.
mental insurance avalable through
groups such as MARP. professional as-
sociations, and credit card holders.
• Publicue the fact that laws in some
states (such as Missoun and Kansas)
prohibit insurance companies from dis-
caminating agansi persons with dis-
abilities.
• Indepenukene living centers can train
and assist consumers in Alling out
forms, challenge apons and policies of
Medicaud Medicare, and insurance
companies, and assist in advocacy. com-
plaints, and appeals processes.
• Get information from and make use
of the state insurance commissioner's
office.

Social Services Four survey items related to informa. tion social agencies provide to coosumers about services 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 raning of 88 percent and an average sausfænon 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. • Benefics of services from one agency can limit bencfics 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, ohen encoun. kenng agencies unable to serve them or refusing services. • Forms and policies of social service agencies are conhusing. Conswner-Generated Allemarives: • Organize a consurner group to Rs. view forms used by social service agencies.

form a consumer nerwork for information and referral. • Create more support groups for mutual assistance. • Provide corrective feedbaci and is formauon to social service Yencies tha fal to inform clienus about bene rics to disabled consumers. • Provide social service agencies wich training on benefics available to disabled consumers. • Consumers should demand that VR cases be reopened, if they have not been fully informed about all benefits

SOCIAL POLICY

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

vailable.
• Independent living centers should
train consumers in what benelius ve
avalable and how 10 access them el.
focuvely.
• lodependent living centers or con-
sumer poups could organize regular
cooperaove meeungs involving repre.
senisoves of all social senince agencies
in the community, or if such an organs.
woon exists. become active and adva
care for services to people with dis.
abilities.
• If consumers are referred to a
agency unable to serve them, they
should contact the refering agency
and sell them the referral was inapprop
riate and why.
• Educale consumers to use the scale
CAP agency. Legal And, and other
walable 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 CIL in
Anaheim, Calif.

Transporiadoa: Availability and
Alordability
Three survey items related to the wail.
ability and affordability of accessible
transportation services were identified
as major problems by 4.008 consum-
ers in nine surveys. They received an
werage imponance rating of 83 per.
cent and an average satisfaction ranng
of 20 percent.
Consumer Idennfied Dimensions:
• Disabled citizens are segregated
from the rest of the community and
forced to remain a home because of
lack of transportacion.
• In most areas, public transportation
is not wheelchair accessible, and part-
transit is expensive or nonexisteni. In
rural areas, accessible transportation is
avalable infrequendy.
• Lack of transportadion is the pri-
mary barnet to community participa.
con, education, employment. recte.
adion, adequate medical care, and in-
dependenr lining for people with dis-
abiliocs.
• Weekend and evening transportation
is a problem.
• Transportation berween neighboring
cities and from rural areas to cities is a
problem.
• Ideally, a city should have accessi-

ble mainline transportation for those
who can use it and paratransit for those
who need it.
• Raradonal events and facilities are
sorncomes inaccessible. Transportanon
to recreasonal events is unavailable.
Consumer Generoved Alkmanves:
• Consumer poups need to work with
exisang community recreational
facilites to make them accessible and
usable for people with disabilives.
• Contact organizers of recreational
evenus for transportation for disabled
participants.
• People with disabilities need to be.
come involved in the planning of com.
munity recreational events and active
in interest groups.
• Form a local lask force on transpor.
tation, decide what local consumers
need and want, chen right for it.
• It is against federal law for paracran.
sit to cost more than mainline transpor-
cation. Educace 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, wher
200 wheelchair users a month partici-
pate.
• Give testimony to state legislatures
on transportation funding.
• Have lifi buses operate at fixed raics
and schedules as they do in Denver, a
city with almost 100 percent accessible
buses.
• Slow transit schedules to accommo
date disabled nders. Drivers should
call out stops ahead of time.
• Include disabled drivers in existing
driver training programs.
• Develop cas pools.
• Conduct public education on varied
modes of transportation needed by dis-
abled citizens.
• Submit formal complaints to trans-
portation authorities concerning main-
line wheelchair-xcessible buses.
• Develop creauve rural and small
city wemaoves. Examples include
merging erisung systems serving dis-
abled nders (Morgantown, W.V.).
ownership of a lift van by a consumer
poup or cooperacive (Cuba, MO), and
use of idle church or school lih-equip
ped buses.

Uollity Bills
One survey question related to the ar.

FALL 1903

35

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 pars by a grant to the University of Kansas from the National Institute on Disability and Rehabilitation Research (NIDRR) Grani No. G008006928

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Assistive Devices: Affordability and Availability..
Commercial Services: Accessibility...
Commercial Services: Availability of Discounts.
Community Support and Responsiveness.
Disability Rights and Advocacy..
Education....
Employment Accommodations, Disincentives, and Training.
Employment Discrimination...
Employment Opportunities.
Handicapped Parking...
Health Care: Affordability and Availability.
Housing: Affordability. Availability, and

Accessibility..
Insurance for Auto, Life, and liability
Insurance for Health Care.....
Media Portrayal and Public Information.
Public Access...
Social Services and Benefits.
Transportation: Availability and affordability
Utility Bills..

3 4 5 5 6 7 8 9 10 10 12

14 16 17 18 18 19 20 22

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Appendix 3 Consumer Ratings of Importance and

Satisfaction by Concerns Category, Survey
Question, and Community or State..

28

Acknowledgments.

38

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