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6
TOPIC PAPER E:
COMMUNITY-BASED SERVICES FOR INDEPENDENT LIVING
National Council on the Handicapped
November, 1985
This topic paper is part of report to be presented to the
President and the Congress on February of 1986. It should
be treated as confidential information.
ACKNOWLEDGEMENT
This is one of a series of ten topic papers developed by the National
Council on the Handicapped as part of its Special Report to the President
and Congress: ERADICATING BARRIERS TO OPPORTUNITY: An assessment of Some
Federal Laws and Programs Affecting People with Disabilities--With - Legisla-
tive Recommendations. The members of the National Council on the Handicapped
wish to expressly acknowledge with appreciation the special contribution
made to this paper by Margaret A. Nosek.
TABLE OF CONTENTS
EXECUTIVE SUMMARY
E-i
I.
INTRODUCTION
E-1
II. BACKGROUND
E-6
A. Independent Living for Persons with Severe
Disabilities
E-6
B. Independent Living for Persons with Mental
Retardation
E-11
C. Independent Living for Persons with Mental
Illness
E-13
III. LEGISLATION
E-18
A.
Independent Living Legislation
E-18
B.
Legislation for Community-Based Services
for Persons with Mental Retardation
E-23
C.
Legislation for Community-Based Services
for Persons with Mental Illness
E-24
D. Social Security Legislation Affecting
All Persons with Disabilities
E-25
IV. EXPENDITURES
E-28
V.
THE NEED FOR INDEPENDENT LIVING RESEARCH,
EDUCATION AND TRAINING
E-35
VI. RECOMMENDATIONS
E-37
REFERENCES
E-45
EXECUTIVE SUMMARY
Community-based services that promote independence for
Americans with disabilities is one of the most promising service
delivery strategies for our nation. Unfortunately, environmental
inaccessibility, overprotective and restrictive attitudes on the
part of relatives and providers, lack of economic resources,
ignorance of the concepts and techniques of independent living,
lack of community-based support services, and a bias toward
institutions in current service providing systems restrict the
ability of many persons with disabilities to achieve and maintain
maximum independence. The National Council on the Handicapped
recommends that the federal government take as a goal the estab-
lishment of a continuum of permanently funded, community-based
services that are guided by independent living concepts as the
primary service delivery strategy for persons with disabilities.
Independent living is defined in the National Policy for
Persons with Disabilities (1983) as control over one's life based
on the choice of acceptable options that minimize reliance on
others in making decisions and in performing everyday activities.
This includes managing one's affairs, participating in the day-
to-day life of the community in a manner of one's own choosing,
fulfilling a range of social roles that includes productive work,
and making decisions that lead to self-determination and the
minimization of non-productive physical and psychological depen-
dence upon others. Independent living is intended to apply to
persons with all type of disabilities.
In order to live independently, disabled persons require a
wide range of support services according to their disability
type. Persons with severe physical disabilities usually require
assistance with personal care, domestic tasks, transportation,
equipment maintenance, and modifications of home and work place
for architectural accessibility. Those with sensory disabilities
additionally require assistance with communication and expression
as provided by readers and interpreters. Persons with mental
impairments who wish to live independently may require some
degree of supervision and assistance with cognitive tasks. All
can benefit from information and referral about these types of
services and service providers, training in independent living
skills, assistance in gaining mobility in the community, and
individual advocacy. All who have extraordinary medical and
personal care expenses require private and/or public resources to
help cover such expenses. Those who are unable to or unsuccess-
ful in finding employment usually require income maintenance
support and financial assistance with daily living expenses.
Services for independent living include any type of assis-
tance, formal or informal, which is available to people with
disabilities who are trying to increase control of their life,
productivity, and participation in the community. Generally,
these services are delivered by community-based organizations
which are privately or publically funded. However, services
rendered by residential institutions can also be considered inde-
pendent living services if they assist residents to achieve these
goals. In this sense, what has traditionally been referred to as
the continuum of long-term care services can be considered inde-
pendent living services if they meet this criterion.
The National Council on the Handicapped recommends that
follow actions to encourage the development of community-based
services that promote independence for Americans with
disabilities.
Congress should amend and fund Title VII, Part A of the
Rehabilitation Act to establish a source for community living
options and basic support services that persons with severe
disabilities need in order to be productive. This Part should be
established as the source for generic independent living services
for persons with all types of severe disabilities and their
families. Its purpose should be to assure the availability of
community living opportunities and basic support services that
persons with severe disabilities need to be productive. To be
eligible, States must produce a plan for the coordinated delivery
of attendant services, accessible transportation, housing, and
information and referral to severely disabled people throughout
the state.
This Part should receive substantial funding. Its implemen-
tation should include standards for program administration,
service delivery, and program evaluation. Additional funds
should be available on a challenge basis to be matched with
contributions by the private sector. Services should be provided
to all severely disabled people and their families, regardless of
income and regardless of vocational potential.
To assure the availability of basic support services for
independent living, the state agency designated to administer
this Part should spend no less than 50% of available funds to
purchase services from independent living centers (as meet the
definition of independent living center under Part B) No more
than 10% of available funds can be used for administrative pur-
poses. The remaining funds may be used at the discretion of the
administering agency in any way that assists people with severe
disabilities in reaching goals of independence and productivity
in their own communities.
Congress should amend and fund Title VII, Part B of the
Rehabilitation Act to establish permanent federal and state
funding for the operation of community-based, consumer controlled
independent living centers. Community-based, consumer controlled
independent living centers have effectively assisted persons with
severe disabilities to increase their level of independence. As
defined in Title VII Part B of the Rehabilitation Act, these
centers must have significant involvement of disabled persons in
policy direction and management, and must offer a combination of
independent living services. The standards adopted by the
National Council on the Handicapped in 1983 should be enforced as
a requirement for the distribution of funds. Part B, which funds
E.ii
over 150 of these centers nationwide, should be made a permanent
source of funding for start up of new centers and core support
for established centers. Of the available funds in each state,
80% should be used for core support of established centers which
meet the NCH standards. The remaining funds should be used to
start new independent living centers. These new centersineed not
meet the standards from the start, but must have a plan to do so
within three years to qualify for further federal funding. Funds
should flow directly from the federal level to individual
centers. A mechanism should be established to provide incentives
for states to match federal efforts to provide a permanent
funding source for independent living centers.
Part C focuses on programs which exclusively serve elderly
blind individuals. While the Council recognizes the importance
of developing services for this largely underserved population,
it feels that Part C should be eliminated since services to be
offered under this part could also be obtained under Parts A and
B or other titles of the Rehabilitation Act.
Congress should amend the Social Security Act to eliminate
its current institutional bias and provide for the full spectrum
of community-based independent living services to severely
disabled individuals based on flexible, situationally determined
eligibility criteria. An extraordinary amount of funds are
consumed by nursing homes and other long term institutions which
generally tend to be highly restrictive settings whose primary
function is to maintain the disabled individual. The Council
believes that strictly maintenance-oriented institutional
programming is indefensible and unnecessary. Wherever possible,
institutions should be transitional and should foster indepen-
dence. The majority of available funding should be directed
toward assisting all individuals with severe disabilities to
achieve self-direction and independence to the maximum of their
potential, in the most dignified and least restrictive environ-
ment. Changes are recommended in Titles II, V, XVI, XVIII, XIX,
and XX to enable more funds under the Social Security Act to go
for community-based services for independent living.
Congress should amend the internal revenue code to establish
a tax credit for taxpayers with disabilities who incur unreimbur-
sed expenses directly related to independent living, employment
and efforts to secure employment, including attendant services,
special transpotation, assistive devices and other support ser-
vices. This recommendation is made as a partial means of
removing the disincentives to work which are inherent in the
Social Security system. While certain tax deductions are cur-
rently allowable under a medical categorization, the regulations
are unclear regarding non-medical disability-related services
which enable the individual to work or engage in productive
activity.
E-1ii
I. INTRODUCTION
Community-based services that promote independence for
Americans with disabilities is one of the most promising service
delivery strategies for our nation. Environmental inaccessibi- -
lity, overprotective and restrictive attitudes on the part of
relatives and providers, lack of economic resources, ignorance of
the concepts and techniques of independent living, lack of
community-based support services, and a bias toward institutions
in current service providing systems, however, restrict the
ability of many persons with disabilities to achieve and maintain
maximum independence. Billions of public dollars are currently
being spent on maintaining millions of disabled Americans in
situations of unproductive dependency, situations which impose
artificial limits on the individual's potential for quality of
life and contribution to society. Significant savings will be
realized as America moves toward becoming an accessible society,
and as more severely disabled people become independent, contri- -
buting citizens.
The Council believes that the majority of persons with
disabilities are able to sustain themselves and contribute to
society provided that facilities and services are available to
assist them in overcoming the artificially imposed attitudes and
barriers that unnecessarily restrict and prohibit them from
E-1
attaining their goals for self-sufficiency and independence.
Under ideal circumstances, persons with disabilities will see
that their needs are met through their own self-sufficiency,
relatives, friends, or private, state, and local sources of
assistance. Federal programs should be designed to fill the void
for those who are so severely disabled that they cannot help
themselves or who can help themselves but have no viable
alternative source of assistance when it is needed.
Independent living is defined in the National Policy for
Persons with Disabilities (1983) as control over one's life based
on the choice of acceptable options that minimize reliance on
others in making decisions and in performing everyday activities.
This includes managing one's affairs, participating in the day
to-day life of the community in a manner of one's own choosing,
fulfilling a range of social roles including productive work, and
making decisions that lead to self-determination and the minimi- -
zation of non-productive physical and psychological dependence
upon others. The type of independence defined here implies an
optimally responsible and productive exercise of the power of
choice. It implies that each disabled person, regardless of his
or her mental or physical ability, should be encouraged and
assisted to achieve maximum levels of quality of life, indepen- -
dence and productivity in the least restrictive environment and
with due respect for cultural or subcultural affiliation. Inde- -
pendent living is intended to apply to persons with all types of
disabilities.
In order to live independently, disabled persons require a
wide range of support services according to their disability
E 2
type. Persons with severe physical disabilities usually require
assistance with personal care, domestic tasks, transportation,
equipment maintenance, and modifications of home and work place
for architectural accessibility. Those with sensory disabilities
additionally require assistance with communication and expression
as provided by readers and interpreters. Persons with mental
impairments who wish to live independently may require some
degree of supervision and assistance with cognitive tasks. All
can benefit from information and referral about these types of
services and service providers, training in independent living
skills, assistance in gaining mobility in the community, and
individual advocacy. All who have extraordinary medical and
personal care expenses require private and/or public resources to
help cover such expenses. Those who are unable to or unsuccess
ful in finding employment usually require income maintenance
support and financial assistance with daily living expenses.
Services for independent living include any type of
assistance, formal or informal, which is available to people with
disabilities who are trying to increase control of their life,
productivity, and participation in the community. Generally,
these services are delivered by community-based organizations
which are privately or publicanly funded. However, services
rendered by residential institutions can also be considered
independent living services if they assist residents to achieve
these goals. In this sense, what has traditionally been referred
to as the continuum of long-term care services could be consi- -
dered independent living services if they meet this criterion of
E 3
assisting residents to reach their independent living goals.
Who are the people who could use community-based independent
living support services? It can safely be assumed that almost
all persons residing in private and government operated institu-
tions, regardless of the severity of their disability, could
benefit in some way from independent living support services.
For a large percentage, it could mean being able to live in the
community in a residence and lifestyle of their own choice and
with the opportunity to realize their potential for productive
contributions to society. For those with the most severe disabi-
lities, it could mean receiving life support and enrichment
services in a dignified and humane manner which maximized their
quality of life. It can also be assumed that services for inde-
pendent living could benefit those who have been rejected by or
failed in the vocational rehabilitation system. These population
estimates should also include the uncounted millions of disabled
persons who live in rural areas and have little access to service
providers of any kind, or who reside with families or in small
group settings yet are maintained in an institution-like environ- -
ment with restrictions on their ability to control their lives
and reach their productive potential.
How many people are there who could use independent living
support services? In 1981, approximately 2,138,970 disabled
persons were served in 38,975 residential facilities at a cost to
the federal and state government of $22.8 billion. These figures
are comprised of the following:
/
o 499,169 persons with mental illness who were served in 277
state hospitals for $4.5 billion (Goldman, Gattozzi, & Taube,
E-4
1981),
o 243,669 persons with mental retardation who were served in
15,633 residential facilities for $5.9 billion (Smith, 1984),
o 1,396,132 elderly and physically disabled persons who
resided in 23,065 nursing homes (Sirrocco, 1983) and other long-
term care facilities at a cost to Medicaid of $12.4 billion
(National Study Group on State Medicaid Strategies, 1983).
In 1984, state vocational rehabilitation agencies closed
131,572 cases which had not reached their rehabilitation goals.
Out o'f almost 600,000 applicants, 245,435 were rejected as ineli- -
gible. Another 48,372 applicants were placed in the category of
extended evaluation, that is, they were not rejected, but were
not yet found to be eligible or ineligible for vocational rehabi- -
litation services. Although there may be some overlap between
these figures and those above, based on the number of persons who
sought disability-related services, a very conservative estimate
of the total number of persons who could extensively use indepen-
dent living support services is more than 2.5 million.
This paper presents an overview of community-based indepen- -
dent living for persons with severe physical and mental disabili-
ties. It includes a brief history of the independent living
movement and a brief analysis of the trend toward community-based
services for persons with disabilities. An explanation of rele- -
vant legislation is given, followed by a program description and
presentation of the cost and impact of existing services. The
paper concludes with recommendations for actions by the federal
government which could improve opportunities for all disabled
E. 5
persons to live independently.
II. BACKGROUND
( Add introduction)
A. Independent living for persons with severe disabilities uc/lc
Historically, there have been serious deficiencies in dis -
ability-related service delivery systems due to the narrowness of
traditional approaches. Prior to the independent living move- -
ment, traditional services for persons with severe disabilities
had emphasized medical recovery and employability as the major
indicators of success. This narrow focus relegated a large
population of persons with disabilities to the limited life
options of institutional placement or extensive dependence on
family care because their potential for recovery or employment
and their ability to live independently in the community either
were not recognized or were grossly underestimated by the rehabi- -
litation and social service systems. In response to the inherent
injustice of this situation, independent living training and
support services began to be delivered by traditional providers
and new entities called independent living programs.
Conceptually, "independent living program" is generic the
most broadly defined term relating to organizations working with
disabled individuals who wish to live independently. Several
different kinds of independent living programs exist. They
differ from one another in at least six primary areas: the
service setting may range from residential to non-residential;
the service delivery method may range from direct to indirect, or
a combination of both; the service delivery style may range from
professional to consumer; the vocational emphasis may range from
E. 6
primary to incidental; the goal orientation may range from tran- -
sitional to on-going; and the disability-type served may range
from single to many. The features of the independent living
program are determined by the needs of the consumers served, the
availability of existing community resources, the physical and
social make-up of the community, and the goals of the program
itself. Custodial care facilities and primary medical care faci-
lities are specifically excluded from the definition of an inde- -
pendent living program.
The development of independent living centers and the
independent living movement began about 15 years ago. The
movement was initiated primarily by young adults with physical
disabilities who sought to broaden the approaches and services
available to them SO that they might acquire the knowledge,
skills, confidence, and assistance they needed in order to parti- -
cipate more fully in society. The practice of delivering inde- -
pendent living support services to disabled persons by disabled
persons combined with advocacy for community accessibility had
its start in Berkeley in the early 1970's. The Berkeley Center
for Independent Living (Zukas, 1975) and the Boston Center for
Independent Living (Fay, 1977) became models for the delivery of
these services.
The philosophical foundations of the independent living
movement and its impact on individuals and community life as
demonstrated by these early programs were documented by Pflueger
(1977) and DeJong (1979). DeJong set out three major proposi-
tions that underlie the philosophical context of the community- -
based independent living movement:
E. 7
O Consumer Sovereignty - -disabled persons, the actual
]
consumers of the services, not professionals, are the best
judges of their own interests. They should ultimately
determine how services should be organized on their behalf.
o Self-Reliance--disabled persons must rely primarily on
their own resources and ingenuity to acquire the rights and
benefits to which they are entitled.
o Political and Economic Rights--disabled persons are
]
entitled to participate fully and freely in the political
and economic life of the community.
The centers for independent living in Berkeley and Boston
established the model upon which independent living legislation
is based. This model has been defined by Frieden et al. ( 1979)
as a community-based, non-profit, non-residential program which
is controlled by the disabled consumers it serves, provides
directly or coordinates indirectly through referral those
services which assist severely disabled individuals to increase
personal self-determination and to minimize unnecessary depen- -
dence upon others. The minimum set of services that are provided
by an independent living center are housing assistance; referral
of attendants, readers, and/or interpreters; peer counseling,
financial and legal advocacy; and community awareness and barrier
removal programs. Other services that are either provided or
coordinated by independent living centers include transportation
provision or registry, peer counseling, advocacy or political
action, independent living skills training, equipment maintenance
and repair, and social-recreational services.
Examples of some other approaches to the concept of indepen-
dent living are seen in Cooperative Living (Stock and Cole,
1977), New Options (Cole et al., 1979), and programs in Illinois
(Jeffers, 1978), New England (Driscoll et al , 1978),
E - 8
Massachusetts (Bartels, 1978), California (Brown, 1978), and
Houston (Frieden, 1978). The various program models are
described by Frieden et al. (1979, 1981) and the Institute for
Information Studies (1979).
In 1978, Congress authorized direct support of independent
living programs as part of the discretionary programs of the
Rehabilitation Services Administration (RSA). The Rehabilitation
Act of 1973 was amended to add Title VII--Comprehensive Services
for Independent Living. As expressed in the legislation, Title
VII was intended to assist in development of community-based
service centers to provide information and referral, transporta-
tion, attendent care, peer counseling, skills training, and other
services. The goal was to facilitate the integration of severely
disabled adults into the mainstream of community social and
economic life, i.e., to decrease their dependence and increase
their self-determination and ability to be productive,
contributing members of society.
Title VII authorization drew upon the program development
experience of early independent living centers and led to the
substantial growth of independent living centers across the
country. Using an approach that is philosophically and opera-
tionally different from those of more traditional service
systems, the independent living centers actively developed and
implemented needed programs to facilitate increased independence
for the people they sought to serve.
In short, the impetus and strength of the independent living
movement resulted in a viable service alternative that:
1.
E-9
emphasized consumer sovereignty, self-reliance, and economic and
political rights; 2. resisted approaches that put the onus of the
problem on the consumer and left decisions about service in the
hands of the professional; and 3. resisted the use of assessment
systems that were experienced as paternalistic. The hallmark of
the independent living movement is advocacy for change, on both
the individual and community level.
As a policy issue, independent living has only recently been
examined (Galvin, 1980; Siegman, 1980; Dalrymple & Richards,
1984). In 1983, the concepts of independent living were
incorporated throughout the construction of the National Policy
for Persons with Disabilities by the National Council on the
Handicapped. This was the first policy document to actively
apply the concepts of independent living to all disability groups
and call for an independent living orientation in the provision
of all human services.
Very little has been written about independent living for
populations underrepresented in programs funded under Title VII.
Katz (1965), Braddock (1978) and Sigelman and Parham (1981)
looked at independent living and mentally retarded persons.
Other populations examined include persons who are deaf (Petal,
1980), elderly (Williams, 1981), and learning disabled (Brown,
1982), and who live in rural areas (Richards et al., 1984;
Richards, in press). For persons with mental impairments the key
focus has been movement from large institutions to smaller
community-based settings. A discussion of this parallel trend to
the independent living movement follows.
E. 10
B. Independent living for persons with mental retardation
The needs and potential of persons with mental retardation
have been thoroughly researched and documented. The system for
providing these persons with services is the most extensive and
well funded in the field of disability. It consists of an intri- -
cate continuum of living arrangements, including multipurpose
long-term care institutions, special purpose institutions, inter-
mediate care institutions, a range of group homes and boarding
homes for sheltered care, foster homes, and private homes
(Braddock, 1978). However, only a portion of this system could
qualify as independent living support services according to the
above definition.
Sigelman and Parham ( 1981) site the decrease in public
residential facility populations and the increase in the number
of smaller and more homelike community residential facilities as
a move toward independent living support services for persons
with mental retardation. They claim that the only common
denominator of these facilities is the provision of a place to
live and supervision; otherwise they differ widely in size,
auspices, training goals, level of funding, and so on. In a
national survey, O'Connor (1976) was able to identify 611 commu- -
nity residential facilities for developmentally disabled persons,
most only recently opened. Using a somewhat less restrictive
definition of a community residential facility-excluding only
family care and foster care arrangements, facilities not licensed
or contracted as mental retardation service providers, and apart
ment programs with no live-in - staff, a more recent national
E-11
survey uncovered 4,427 community-based residential facilities
serving a total population of 76,250 (Bruininks, Hauber, Kudla,
1980). Over half of the facilities had opened between January
1973 and the time of the survey in June 1977.
Clearly, then the deinstitutionalizatio movement has made
rapid progress, and community residential facilities today
represent a major option for many retarded persons who could not
easily live on their own. According to the survey of Bruininks
et al. (1980), approximately a third of the residents came to
their facilities from institutions, but almost as many (32.4%)
came from the ir natural homes. The remainder had entered their
community residential facilities from other residential settings.
These findings indicate that such facilities are also meeting
needs among persons who, while never institutionalized, require
more training and support than their own families can provide,
especially when they reach adulthood.
About 62 percent of the residents of community residential
facilities are 22 years old or older (Bruininks, Hauber, and
Kudla, 1980), and the vast majority are in some productive
activity in their communities. According to O'Connor's 1976
survey of community residential facilities, about nine percent of
the residents were competitively employed; 48 percent were in
workshops or training programs; 31 percent were in school; and
eight percent were in some other major day activity. Only four
percent were without such major activities. These individuals,
then are active in the community and yet display widely
different degreees of competency. Moreover, residents are
drawing on the whole range of services available in the
E-12