Independent Living Indicators (ILI) for
evaluating policies and actions
developed under the philosophy of
Independent Living
January 2008
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
Authors1:
Antonio Centeno
Manuel Lobato
Javier Romañach
CopyRight
This information is free. You can redistribute it and/or
modify it under the terms of the GNU General Public
License as published by the Free Software Foundation,
either version 2 of the License, or (at your option) any
later version.
Note:
This document must be always distributed with an Excel
© spread sheet (ILI.xls) that enables the fast and
efficient use of the Independent Living Indicators to
evaluate Independent Living projects.
1 The authors greatly thank corrections and contributions of Gregory corners, Mariola wheel, Vicente
Valero, Carmen Morales, Jose Antonio Nóvoa and Luis Miguel Bascones, all members of the Independent
Living Forum.
Page 2 / 35
TABLE OF CONTENTS
INTRODUCTION ....................................................................................................................... 5
1. THE NEED FOR AN OBJECTIVE INDICATOR ........................................................... 5
2. THE RIGHT TO LIVE AN INDEPENDENT LIFE ........................................................ 6
3. BASIC PRINCIPLES TO ACHIEVE INDEPENDENT LIVING ...................................7
3.1 Independent Living and human rights .............................................................................................. 7
3.2 The principles in the Spanish legal system ....................................................................................... 7
3.2.1. Discrimination ................................................................................................................................ 8
3.2.2. Equal opportunities ..................................................................................................................... 10
3.2.3. Law for the promotion of personal autonomy and care for people in a situation of dependency:
bad principles, bad tools ........................................................................................................................ 11
4. SPECIFIC INDEPENDENT LIVING PRINCIPLES .................................................... 12
5. CLAIMS OF THE INDEPENDENT LIVING FORUM ................................................ 13
6. LIST OF PRINCIPLES AND DEMANDS..................................................................... 14
6.1 Principles ....................................................................................................................................... 14
6.2 Demands ........................................................................................................................................ 15
7. THE CONCEPTS NEEDED FOR AN INDEPENDENT LIVING PROJECT............ 16
7.1 Participation in the Community Life ............................................................................................... 17
7.1.1. Definition ..................................................................................................................................... 17
7.1.2. Justification .................................................................................................................................. 17
7.1.3. Indicators: .................................................................................................................................... 17
7.1.4. Supported principles and demands ............................................................................................. 18
7.2 To Prevent and compensate the deficits of citizenship................................................................... 18
7.2.1. Definition ..................................................................................................................................... 18
7.2.2. Justification: ................................................................................................................................. 18
7.2.3. Indicators ..................................................................................................................................... 19
7.2.4. Supported principles and demands ............................................................................................. 20
7.3 Person centered ............................................................................................................................. 20
7.3.1. Definition: .................................................................................................................................... 20
7.3.2. Justification: ................................................................................................................................. 20
7.3.3. Indicators: .................................................................................................................................... 21
7.3.4. Supported principles and demands ............................................................................................. 22
8. PRIORITIZATION, WEIGHTING AND EVALUATION OF INDICATORS ......... 22
8.1 Indicators ....................................................................................................................................... 22
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
8.2 Types of indicators and their values ............................................................................................... 24
8.3 Indicators Weighting ...................................................................................................................... 27
8.4 Justification of the weighting ......................................................................................................... 28
9. INDEPENDENT LIVING INDICATOR ....................................................................... 29
10.
THE TOOL..................................................................................................................... 29
10.1 Basic structure ............................................................................................................................. 30
10.2 Use of this tool ............................................................................................................................. 34
11.
BIBLIOGRAPHY .......................................................................................................... 34
Page 4 / 35
Introduction
In recent months, is observed the landing of legal measures, initiatives and
projects based on the philosophy of Independent Living in Spain2.
The first experience in this line was held in San Sebastian in 2004 and was
followed by pilot projects in Madrid (July 2006), Barcelona (November 2006),
Andalucia (March 2007), Cataluña (April 2007) and Galicia (October 2007).
Several initiatives are emerging, like in Valencia, and others to come. In
addition, throughout the year 2007 is expected the development of article 19 of
law 39/2006, of 14 December, of Promotion Of Personal Autonomy And Care
For People In A Situation Of Dependency, which establishes the Personal
Assistance as a subjective right, and is expected, in 2008, the recognition of the
figure of the Personal Assistant and the gradual extension of the so-called
National System For Autonomy And Attention To The Dependency.
To ensure that these projects and initiatives will serve de facto to accomplish
the objectives of equal opportunities and elimination of discrimination, which are
pursued by the philosophy of Independent Living, is essential the development
of indicators that allow us to evaluate them objectively.
This document is the first proposal of concepts and indicators that enables the
citizens, politicians and professionals of this sector to dispassionately evaluate
in which measure some of the social policies and their concrete actions, in this
case Independent Living projects, approach us to the objectives established in
the Spanish legislation by the Law 51/2003, of 2 December on Equal
Opportunities, Non-Discrimination And Universal Accessibility For People With
Disabilities.
1. The need for an objective indicator
The need for an objective indicator arises from several circumstances:
1. The philosophy of independent living, despite its simplicity, is a profound
change in the way of carrying out social policies, completely different
from the traditional one, based on a medical-rehabilitation model; still in
force. The inertia of the past often makes difficult to adopt new ways of
thinking. Therefore, this indicator can be helpful to all persons and
institutions interested in the concept of Independent Living, even though
they lack the necessary experience to assess or evaluate initiatives and
activities in this area.
2. The people involved in the movement of Independent Living, even those
that have launched projects based on it, have doubts regarding the
2
The elaboration of this document is based in precepts contained in the Spanish Constitution and the
principle of 'civil dialogue' (article 2. Principles. LAW 51 of December 2, 2003, on equal opportunities, nondiscrimination and universal access of people with disabilities) and in articles 1 and 2 of the "Declaration
on the Right and Responsibility of Individuals, Groups and Organs of Society to Promote and Protect
Universally Recognized Human Rights and Fundamental Freedoms" of the UN (1998)": "Everyone has the
right, individually and in association with others, to promote and to strive for the protection and realization
of human rights and fundamental freedoms at the national and international levels."(article 1)." Each State
has a prime responsibility and duty to protect, promote and implement all human rights and fundamental
freedoms, inter alia , by adopting such steps as may be necessary to create all conditions necessary in the
social, economic, political and other fields, as well as the legal guarantees required to ensure that all
persons under its jurisdiction, individually and in association with others, are able to enjoy all those rights
and freedoms in practice." (article 2).
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
extension and intensity of the implementation of the fundamental
principles of Independent Living.
3. In Spain, the Independent Living philosophy has arrived very recently
and poses a new and innovative vision to understand the functional
diversity (disability). Many entities have got into the "truck of modernity"
which stands for the Independent Living, releasing proposals and
projects that, however, don’t do more than put the new label and keep
the old principles. This document can help detect this type of "cheats".
4. Part of the spirit that inspires the Law Of Promotion Of Personal
Autonomy And Care For People In A Situation Of Dependency (LEPA) 3
is corresponding very timidly with the philosophy of Independent Living.
This document can help public administrations to develop those aspects
in the best possible way.
2. The right to live an independent life
Given that the Independent Living movement started with force very recently in
Spain, at the end of 2001, there is a deep ignorance about their roots, their
support and their scope.
However, the right to develop policies based on this philosophy is reflected in
article 19 of the U. N. Convention on the rights of persons with disabilities,
adopted on 6 December 2006 and signed by the Government of Spain, along
with other 80 countries, on March 30 2007: "Article 19. Right to live
independently and be included in the community"
Also in the Spanish legislation, in the Law 51/2003 of 2 of December On Equal
Opportunities, Non-Discrimination And Universal Accessibility Of Persons With
Disabilities (LIONDAU), specifies that one of the principles of this law is the
principle of Independent Living: "(Article 2.a) Principles." Independent living."
Therefore, when talking about initiatives in the field of Independent Living, we
are talking about respecting the Human Rights of disabled persons and to
develop policies in line with the Spanish legislation.
3
For example, in the text of the ACT 39/2006 its provided that:
Article 3. Guiding Principles of the Act.
The guiding principles of this Act are as follows:
e) Assessment of people’s needs, according to equity criteria in order to guarantee actual equality.
f) Personalised care, paying special attention to the situation of those that require greater positive
action as a consequence of suffering a higher degree of discrimination or less equal opportunities.
i) The dependent persons shall remain, wherever possible, in the setting in which they live.
Article 4. Rights and duties of the dependent persons.
2. Similarly, the dependent persons shall enjoy all of the rights that are set out in standing legislation, and
especially the following:
a) To enjoy the fundamental human rights and liberties, with full respect for their dignity and
intimacy.
e) To participate in the formulation and application of the policies that affect their wellbeing, either
on an individual basis or by means of association.
k) To equal opportunities, non-discrimination and universal accessibility, in any of the spheres of
implementation and application of this Act.
Page 6 / 35
3. Basic principles to achieve independent living
Policies and initiatives developed under the philosophy of Independent Living
are based on two pillars: on a general and basic principles set out and defined
both in the UN Convention, and in the LIONDAU, and on some specific
demands developed by the Independent Living movement. These demands
consists in more practical and practicable elements in order to ensure the
compliance of the basic principles in a way defined by the people with functional
diversity.
Let's first analyze the general principles:
3.1 Independent Living and human rights
The Independent Living Model and its modern development, the diversity
model4, presumes that the people with functional diversity are people with the
same dignity and, therefore, their life should be valued as equal to other
citizens’ life, so this group have to be recognized to have the same rights (and
obligations) as other citizens.
The Support of this conception lies mainly in the Human Rights system and
specifically in the U. N. Convention on the rights of persons with disabilities,
aproved on 6th December 2006 and signed by the Government of Spain, along
with other 80 countries on March 30th, 2007.
The principles of the Convention are specified in article 3 thereof:
" Article 3. General principles
(a) Respect for inherent dignity, individual autonomy including the freedom to
make one’s own choices, and independence of persons;
(b) Non-discrimination;
(c) Full and effective participation and inclusion in society;
(d) Respect for difference and acceptance of persons with disabilities as part of
human diversity and humanity;
(e) Equality of opportunity;
(f) Accessibility;
(g) Equality between men and women;
(h) Respect for the evolving capacities of children with disabilities and respect
for the right of children with disabilities to preserve their identities.
3.2 The principles in the Spanish legal system
Focusing on the Gordian core provided by the United Nations we can see that,
in essence it was already formally referred in the Spanish legislative system, in
the provisions of the Law 51/2003 of 2nd December on equal opportunities,
non-discrimination and universal accessibility of persons with disabilities
(LIONDAU) .
4
PALACIOS, A., ROMAÑACH, J. «El modelo de la diversidad. La Bioética y los Derechos Humanos como
herramientas para alcanzar la plena dignidad en la diversidad funcional». Ediciones Diversitas - AIES.
2006. Available in Web:
http://www.asoc-ies.org/diversitas/docs/modelo%20diversidad.pdf
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
This Act focuses on eradicating the permanent discrimination suffered by
this group of people and taking the appropriate measures to ensure their equal
opportunities, giving preponderant importance to accessibility.
Both principles, non-discrimination and equal opportunities, are often confused
as being the same, but are in fact complementary and is needed the
accomplishment of both to achieve an independent life.
3.2.1. Discrimination
A person with functional diversity is permanently discriminated, regardless of
their diversity. To give some examples: the absence of subtitles discriminates
the person with hearing diversity, educational systems discriminates people with
intellectual diversity, the absence of information systems and acoustic guidance
discriminates persons with visual diversity, the labour systems discriminates
persons with mental diversity, the steps discriminates the majority of people
with physical diversity, etc.
Eradicating discrimination is not an easy task and requires actions of the
society, which are slow to be established, as can be testified by other
discriminated groups like women or homosexuals, since most of the
discriminatory elements are part of the mentality of the people that make up a
society.
In the LIONDAU, these measures are established in articles 6 and 7.
"Article 6. Measures against discrimination .
1. Measures against discrimination are defined as those whose purpose is to
prevent or correct the fact that a person who is disabled is being directly or
indirectly treated less favorably than another person who is not, in an analogous
or comparable situation.
2. It shall be considered that indirect discrimination exists whenever a legal or
regulatory provision, a conventional or contractual clause, an individual
agreement, a unilateral decision, a criterion or practice, or an environment,
product or service, which is apparently neutral, may cause a specific
disadvantage to a person compared to others as a result of a disability, provided
that, objectively viewed, they were not created for some legitimate purpose and
the means for achieving that purpose are not adequate and necessary.
Article 7. Content of anti-discrimination measures.
Measures against discrimination may consist of prohibiting discriminatory
behaviors and harassment, accessibility requirements and requirements to
eliminate obstacles and make adjustments within reason.
For these purposes, the above terms are defined as follows:
a) Harassment: All behavior related with the disability of a person, the objective
or results of which are to attack the person’s dignity or create an intimidating,
hostile, degrading, humiliating or offensive environment.
b) Accessibility Requirements: The requirements that must be met by
environments, products and services, as well as the conditions of nondiscrimination in rules, criteria and practices, in accordance with the principles
of universal accessibility in design for all.
Page 8 / 35
c) Adjustment Within Reason: The measures for adaptation of the physical,
social and attitudinal environment to the specific needs of people with
disabilities that, in an effective and practical manner and without placing a
disproportionate burden, facilitate the accessibility to or participation by a
person with a disability under equal conditions to all other people.
In order to determine whether a burden is or is not proportionate, the costs of
the measures shall be taken into account, as well as the discriminatory effects
entailed for people with disabilities if it is not adopted, the structure and
characteristics of the person, entity or organization that must be put into
practice and the possibility of having to obtain official financing or any other
aid.
For this purpose, the competent bodies of the Public Administration may create
a public aid system to contribute to paying the costs which result from the
requirement to make adjustments within reason.
Any discrepancies between the person who requests the adjustment within
reason and the required party shall be settled through the arbitration system
foreseen under Article 17, of this law, without prejudice to the protection of the
Administration or court, as appropriate in each given case."
As can be seen, to eradicate discrimination requires a large and complex set of
actions, not all of them simple.
What is more simple is to determine if an Act, policy, action or omission is
directly or indirectly discriminatory.
For example, if a person with physical diversity cannot travel by train, on any
train, at any time, because the train is not accesible, that person is being
discriminated compared to the rest of the citizenry. Is it conceivable today not to
allow anybody, from another group traditionally discriminated against as a
woman, to travel on any train, for the simple fact of being different?
Given that there are discriminated groups that have had many more years
of struggle for their rights, such as women, that progress can be used to help on
the detection of discrimination. So, the key question to find out whether exists or
not discrimination could be: what would happen if that fact, action or omission
had happened to a woman by the simple fact of being a woman?
Following the example of the train, although all trains were accessible and
anyone could travel at any time, there are people who may need to travel
accompanied because of its diversity, as persons in constant need of support or
persons with visual diversity, just to give a few examples. To travel, they must
pay for two tickets instead of one, in inequality of opportunities with the rest of
the citizenry when it comes to travel.
Therefore, it would not be enough to have a train without barriers, intended for
all, non-discriminatory, to ensure equal opportunities for a person with functional
diversity.
The same thing would happen with a fully accessible environment as an
adapted bathroom, it wouldn't be enough to ensure equality of opportunities for
people who, because of their diversity, requires assistance of another person to
go to the bathroom.
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
Therefore, in the case of people with functional diversity, we must go beyond
the absence of discrimination and ensure equal opportunities.
3.2.2. Equal opportunities
In the Spanish legal system, the vulneration of the equality of opportunities for
people with functional diversity is expressed in the LIONDAU:
"Article 4. Violation of the right to equal opportunities.
A disabled person’s right to equal opportunities shall be regarded as violated
when direct or indirect discrimination occurs, or there is harassment, failure to
fulfill the accessibility requirements and make adjustments within reason, as well
as the failure to carry out the legally established positive action measures."
As you can see, to have equal opportunities depends on four fundamental
concepts:

Absence of discrimination, direct or indirect

Harassments

Accessibility

Positive action measures
So, it is not enough that there is no discrimination, but it is also required an
accessible environment and the existence of positive actions5.
The question that now arises is: who must guarantee that
opportunities? The answer appears in article 5 of the own LIONDAU:
equal
"Article 5. Guarantees of the right to equal opportunities.
In order to guarantee the right to equal opportunities of people with disabilities,
the public powers shall establish measures to fight discrimination, as well as
positive action measures."
Public authorities will establish such measures (anti-discrimination and positive
actions) and, therefore, will avoid further discriminatory measures for people
with functional diversity, although already exists gaps in the compliance of this
article, and by extension of this law6.
The measures provided in the LEPA, should have been part of the positive
action measures of public administrations to ensure equality of opportunities for
persons with functional diversities who live in a situation of "inDependence", but
this was not the approach chosen by the Spanish Government, so now is in the
hands of the autonomous regions governments to adopt measures of this kind,
through Independent Living programs aimed to eradicate discrimination and to
guarantee equality of opportunity for people with functional diversity in an
effective way.
5
Harassment is less relevant for the purpose of this document, although we should not forget that many of
the proposals emanating from the independent living philosophy have proven to be very useful to combat
it.
6
As it is the case of the co-payment depending on income in the LEPA. In this case, people with functional
diversity living in a situation of "inDependence" are forced to contribute to the payment of the services or
benefits because they are different to the rest, since payment depending on income is already done via
direct taxes. This discriminatory measure has been adopted by the Spanish Government in the year 2006.
Page 10 / 35
These two principles: equality of opportunities and non-discrimination, that
basically supports the philosophy and Independent Living projects, but there are
some other principles that are specific of this philosophy.
3.2.3. Law for the promotion of personal autonomy and care for
people in a situation of dependency: bad principles, bad tools
It is obvious that the enactment of the LEPA has been an important milestone in
the landscape of social policy in the Spanish State.This law responds to a
insistent demand of society and to the need to "approve" a pending subject
which, for one reason or another, has been left to the end of a political process
that began with the end of the dictatorship and the construction of a democratic
society and laws, more than 30 years ago. Therefore, there are social reasons
(blatant and persistent social demand and a large historic debt owed to more
than three million of our citizens discriminated because of their functional
diversity), as well as legal reasons (a strong legislative framework at the
national and international level), that should have made the LEPA to be not only
a mere system of reorganisation and cataloguing of social products and
services and their financing, more similar to a law for the promotion of
employment and social marketing, than to a tool for the effective fight against
the systematic, permanent discrimination of our collective.
It is true that, after an arduous process of negotiation, the LEPA recognizes the
subjective right to the benefits and services established on this law, the
principles on which it is based prevents the generation of tools at the disposal of
the citizens of our country in accordance with the legal framework (at national
and international level). These principles can be summarized as follows:
1. The ideology that lies behind the term "basic activities of daily life" which
is only refered to the activities of personal care, hygiene and household,
ignoring others that today are fundamental in Western technological
societies, such as the leisure, the enjoyment of leisure time, personal
relationships, etc., this ideology place us at the level of creatures who
only aspire to mere survival. This ideological principle promotes the
"farmerization" of people with functional diversity.
a. It explains that the vast majority of the offered services are caring
services (daycare and nursing centres, homecaring services).
b. It explains the absence of the concept of Independent Living as an
inspiring element of the law, ignoring the provisions of other
regulations (UN Convention, LIONDAU).
c. It explains the excessive delay in the formal and official
recognition of the figure of the personal assistant7.
d. It explains that the LEPA excludes from the economic provision for
personal assistance activities of relationship, personal and with
the environment, as important, or even more, than the basic
activities.
7
In fact, to date January 7, 2008, one year after entering into force the LEPA, it has not been recognized
yet, by the General Administration of the State, the figure of the Personal Assistant.
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
e. Explains the inconsistency of the LEPA with European directives
in the field of social services (European Commission, economic
and Social Committee).
2. Ignores the social responsibility in the social phenomenon of the
functional diversity, which generates discrimination, and situates the
‘problem’ in the person.
a. It explains that the concept of normalization mentioned in the
LIONDAU is almost absent because of an overwhelming majority
of institutionalized services, which are in themselves exceptional
and anti-normalizers.
b. Explains the penalty faced by people with functional diversity
having to co-pay the services depending on their income, causing
a violation of equal opportunities and discourages the access to
the labour market of people with functional diversity.
c. It explains that is avoided the incorporation into the law an
authentic system of provision of technical and accessibility to
housing aids, leaving things as they are.
d. It explains that people with functional diversity are, if they are
lucky, heard, without providing them resources to defend their
personal life projects and needs involved.
4. Specific Independent Living principles
The Independent Living philosophy has a specific mention in the two documents
mentioned above: the UN Convention and the LIONDAU. Their own principles
had been also defined in several documents, from which we take as a reference
the Manifest of the Independent Living Forum .
The Independent Living philosophy is one of the basic principles of
the LIONDAU, as established in article 2:
"Article 2. Principles .
This law is inspired by the principles of an independent life, normalization,
universal accessibility, design for all, civil dialogue and the multi-disciplinary
nature of policies regarding disability."
And establishes in its article 2.a what, for the purposes of that Act, is
understood as Independent Living:
" a) Independent Life: A situation in which the disabled person exercises the
power to make decisions about his or her own existence and actively
participates in the life of his or her community, in accordance with the right to
free development of personality."
In addition, the UN Convention, has an article that talks specifically about
independent living:
“Article 19. Living independently and being included in the community.
States Parties to the present Convention recognize the equal right of all persons
with disabilities to live in the community, with choices equal to others, and shall
take effective and appropriate measures to facilitate full enjoyment by persons
with disabilities of this right and their full inclusion and participation in the
Page 12 / 35
community, including by ensuring that:
(a) Persons with disabilities have the opportunity to choose their place of
residence and where and with whom they live on an equal basis with others
and are not obliged to live in a particular living arrangement;
(b) Persons with disabilities have access to a range of in-home, residential and
other community support services, including personal assistance necessary
to support living and inclusion in the community, and to prevent isolation
or segregation from the community;
(c) Community services and facilities for the general population are available
on an equal basis to persons with disabilities and are responsive to their
needs.”
Turning now to the principles defined in the Independent Living movement itself,
established in Spain by the Manifesto of Independent Living Forum, we find:
"The basic principles of the Independent Living philosophy are: human and civil
rights, self-determination, self-help, the possibility to exercise power,
responsibility over their own lifes and actions and the right to take risks."
5. Claims of the Independent Living Forum
In addition to the principles on which to base the analysis, there are also the
demands of Independent Living Forum, expressed in its manifesto8:
"1. Our voice to be listened in all discussions on topics that affect our lives,
especially on the issue of bioethics. Special emphasis has to be put on persons with
cognitive deficiencies or mental illness, in the sense that other people watch over
their interests and make decisions for them.
2. The model of Independent Living as the inspiration of all initiatives and
services for people with functional diversity. Similarly, resources and services,
public or private, must be managed, as far as possible, by people with functional
diversity and, without exception, it must be given the ability to influence and
control them.
3. The conditions necessary so that we can be able to direct our lives and take
care of ourselves. To do so, it should be ensured the accessibility and must be
established a true system of provision of technical aids, non-existent today, which
ensures people with functional diversity to get devices or necessary adaptations.
4 Services of personal assistance really useful for us and where we can select,
train and pay our personal assistants and that provides the necessary funds so that
no person who needs it could be deprived of it for economic reasons.
5. The education in equal opportunities as a fundamental tool so that we can
develop ourselves and live in an environment designed by and for persons without
functional diversity.
6. The right to sexuality and to raise a family."
8
Are exposed only the claims, the remaining contents of the manifest is already reflected in the previous
documents documents.
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
On the basis of all these arguments, we are ready to deal with the definition of
the criteria that determine whether a particular project follows the philosophy of
Independent Living and compare it with other similar projects.
6. List of principles and demands
Bearing in mind the analyzed concepts so far, we can arrange a table to
summarize the principles on which any initiative of Independent Living should
be based on and what has been already sued in public documents by the
movement itself, so that can be articulated in a more practice way in the next
chapter, already thinking of some way of measuring the degree of fulfilment of
the different projects of Independent Living and to make available an indicator
that allows to measure them:
6.1 Principles
Abbreviated concept
Principle
UN
LIONDAU
FVI
manifesto
Dignity
Inherent dignity, same value of life



Self-determination
Independence and freedom to make
decisions



Non-discrimination
Non-discrimination. Full
status
citizenship



Community life
Participation and full and effective
inclusion in society



Right to live independently



Diversity
Acceptance of people with functional
diversity as part of the diversity and
human condition

Equal opportunities
Absence
of
direct
or
indirect
discrimination, of any failure to comply
with the accessibility requirements and
with the reasonable adjustments, as
well as the positive actions legally
established



Accessibility
Accessibility to the entire environment,
housing and the necessary technology



Gender
Equality between men and women

Children
Respect to the faculties of children,
facilitating
individual
process
of
development and their specific identity

Independent living
Table 1. Principles of independent living
Page 14 / 35




6.2 Demands
Abbreviated concept
Demand
UN
LIONDAU
FVI
manifesto
Public voice
Participation in public debates



Political voice
The policies should be based on principles
of independent living



Co-decision
Determination of the PIA9 (needs and
supports) by the person with functional
diversity, being essential the mutual
agreement in cases of discrepancy with the
administrations and/or the acceptance of
an independent arbitration system.
10


Self management
Resources and services managed by own
people with functional diversity.
11

Personal Assistance
Assistance personnel. Freedom to be able
to select, direct hire / dismiss the own
personal assistants (PAs)
12

Peer Support
(emancipation)
Training for the emancipation process
carried out by people with actual
experience in IL
Control of Resources
(direct payment)
Direct control of resources, especially
economic ones (direct payment in its
different forms), by the person with
functional diversity user of personal
assistance. This requires, for consistency,
the customization of resources, i.e.,
benefits and services according to the
needs of each individual in intensity and
budget
PAs training
training of personal assistants. Freedom to
choose the training of each PA, including
the training carried out by the Workleader
based on his own life experience
Technical aids
System of Provision of technical aids,
which ensures that people with functional
diversity have devices or adaptations
needed


13





9
Individual Attention Program (PIA), using the terminology of the LEPA. In the terminology used in the
environment of the Spanish independent living movement would be "Individual Plan of IL" (PIVI).
10
For your interest, see article 12, paragraphs 4 and 5 of the UN Convention on the rights of persons with
disabilities.
11
This demand is not explicitly in the LIONDAU but emerges from his spirit. The LIONDAU pursues that
people with functional diversity have power of decision about its own existence and actively participate in
the life of their community, in accordance with the right to the free development of personality (article
2. Principles). The concept of free development of the personality is crucial, and in this right it’s framed the
demand that the resources and services will be managed and controlled by the person with functional
diversity. How could the right to the free development of personality be ensured without having control
over those resources that are basic, fundamental and essential to the existence of people with functional
diversity?
12
Personal assistance, within the framework of the LIONDAU, is established in its article 9: "Content of
positive action measures". This is of great importance because it is legally recognized that personal
assistance is a positive action for non-discrimination and equal opportunities.
13
Idem to the footnote number 11.
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
Housing
Provision of affordable housing, with cost
depending on the level of disposable
income

Weighted adequacy
income
Ensure enough income bearing in mind the
extraordinary expense that entails a
discriminatory
environment
(including
products and services)

Family
Right to sexuality and to raise a family



Table 2. Demands of the Independent Living collective
7. The concepts needed for an Independent Living
project
After the analysis and compilation of principles and demands needed to ensure
that any social policy conforms to the Independent Living philosophy, we
continue below making an analysis and relocation of concepts, so that
beginning on the current reality, widely discriminatory, and through Independent
Living projects, it can be adjusted to achieve full citizenship for all people with
functional diversity.
In the Spain of the year 2007, as evidenced by the LEPA and its regulatory
development, policies on functional diversity are made in a way that:

Do not guarantee full participation in community life and still forces
people with functional diversity to choose between living with their
families or in an institution

Extend the historical citizenship debt

Are based in the "coffee for all" principle rather than providing solutions
focused on the person.
With the goal of eradicating those mistakes, we are going to define now each of
the three fundamental changes that must be pursued by Independent
Living projects :

Participation in community life

To Prevent and to compensate the deficits of citizenship

To Focus the actions on the person
For each expected change, further on are specified the indicators that should be
used, so that can be established checkpoints that helps to measure the
contribution of each action of the Independent Living projects to generate these
three changes.
The horizon of these changes is to comply with the basic and specific principles
of the Independent Living philosophy.
For each change, it is also provided a box with the principles and demands
supported. These principles and demands are those that were presented in
tables 1 and 2 (pages 15, 16 and 17) and that arise from an in-depth analysis of
the three documents (UN, LIONDAU and manifesto of the FVI) on which we
have been based for the preparation of this document. The purpose of these
Page 16 / 35
boxes is to highlight the benefits provided by the social changes that we are
proposing.
7.1 Participation in the Community Life
7.1.1. Definition
Independent Living projects should provide tools to the people with functional
diversity (PFD) so that they can ACTIVELY participate in the
community where they live or where they undertake activities, according to the
parameters that determine the own PFD and in keeping with his individual and
personal life plan.
7.1.2. Justification
The project must be consistent with the social principles in which it is
immersed. In general, modern societies guarantee citizens access to
products, goods and services so they can make decisions, fundamental to
enable them to develop personally, socially and laborly, in freedom.
People who are not discriminated by their functional diversity are not isolated in
their homes or parked at residences, instead of this, the society, through
education, leisure and work, adopts measures that ensure their members a
place in their community.
7.1.3. Indicators:
This change has to be achieved by making Independent Living projects to
ensure that:
1. Personal assistance (PA) hours have to be aimed at the
realization of all kinds of activities not only to the "basic activities
of daily living" (BADL). The Activities are determined and delimited by
the criterion of being the usual from any citizen belonging to the
community that the PFD belongs.
2. Personal assistance (PA) hours have to be those needed by the
PFD so, a priori, must not exist any limitation on the number of hours
per day destined for personal assistance (see also footnote 15 on
page 26).
3. Are opened to any PFD, regardless of their life project. It is the
responsibility of individuals, including people with functional diversity,
to choose the orientation given to their life projects. Personal
assistance is a basic tool for the personal development of some PFD
and should not depend on life projects that are considered best for
other person apart from the own PFD. We Must not deny personal
assistance to anyone if they do not study or work or, in general, to
require a particular life project.
4. Support actions to obtain a home must be taken. This tool can be
materialized in actions to influence housing policies in the
environment where the project is located, or practical support
measures in the searching for housing.
5. Support actions to achieve technical aids. This tool can be
materialized in actions to influence the policies of the technical aids
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
provision services in the environment where the project is located, or
through practical measures of support in finding and obtaining of
technical aids.
7.1.4. Supported principles and demands
Self-determination
Non-discrimination
Community life
Independent
living
Equal opportunities
Children
Public voice
Political voice
Self management
Personal assistance
Resources
managementt
(direct payment)
PAs training
peer Support
(emancipation)
Technical aids
Housing
Family
7.2 To Prevent and compensate the deficits of citizenship
7.2.1. Definition
The Independent Living projects must take measures to prevent and
compensate the effects of the medical-rehabilitation model that still influences
policies and social services aimed at people with functional diversity.
7.2.2. Justification:
The Medical-rehabilitation model centers the object of its activity in the PFD,
through their diagnosis. As a result, the "active" players in the system are the
profesionals through the institutions (including the family). This causes many
PFD to be 'passive', which has led in many cases to deficits in personal
development that places the PFD, when it comes to decision making, in a clear
"disadvantage" and "dependency" respect to the rest of our fellow citizens
without functional diversity, which is translated into a deficit of citizenship.
On the other hand, the system acts making the PFD responsible of the situation
and ignoring its own responsibility (as is recognized in the LIONDAU 14). This
responsibility is derived from the fact that the dependency is produced by a
physical and ideological environment which discriminates, because of its
design, the PFD, ostensibly reducing its level of citizenship, caused by the
indifferent performance of public administrations.
One consequence of this responsabilization towards the people, is that the
system forces the PFDs to participate in the costs of the tools they need (goods
or services) by applying different principles than to the rest of the citizens,
despite the fact that the environment is discriminatory, environment created by
the society and whose design rules are responsibility of public administrations.
14
See LAW 51 of December 2, 2003, on equal opportunities, non-discrimination and universal access of
people with disabilities, in its explanatory statement: "nowadays, it is known that the disadvantages
suffered by a person with a disability originate from their personal difficulties, but also and above all from
the limiting obstacles and conditions which, in society itself, having been conceived to fit the pattern of the
average person, impede full participation by these citizens".
Page 18 / 35
This loss of economic resources of the PFD limits their opportunities for social
participation on equal terms, so that its status as a citizens, compared to the
rest, is restricted.
7.2.3. Indicators
This change of concept has to lead the Independent Living projects to meet the
following conditions:
1. To be opened to the participation of all people with functional
diversity, any kind of it (physical, sensorial, psychic or mental). They
should be based on the idea that the PFD is a citizen with full rights and
this rights are not determined depending on the functional diversity. In
the absence of moral autonomy, as in the case of children, or in some
cases of intellectual or mental functional diversity, the management of
personal assistance will fall on fathers, mothers, guardians appointed by
the judge, or a person chosen by the PFD.
2. To be opened to the participation of all the PFD without taking their
age into account. The children and the older person are also full-right
citizens. Personal assistance services, as well as any others that could
be implemented, must be adapted to their activities and life plans, from
an individual point of view.
3. To offer training in the philosophy of diversity and independent
living. Often, the PFD are hostages of the medical-rehabilitator
speech. This discourse turns them into passive individuals, with a diffuse
identity and ignorant of the rights which they are entitled with, and a
tendency to delegate into others the fight for their rights. Training in
topics related to the concept of citizenship, diversity, dignity and rights, is
a powerful tool to create or restore the skills and abilities to take and hold
the place that corresponds to them in our community. This training also
has to include the rights of the personal assistants. Users of personal
assistance must know and defend the labour rights of their assistants
(security and hygiene, social insurance, collective agreements, etc.).
4. To provide opportunities and resources for peer support and peer
consulting. The own people with functional diversity experienced in IL,
are in the best disposition to understand and, therefore, to help others to
begin the road of independent life. An Independent Living project has to
be based on the experience of the PFD, whether they are included into
the project or external to it. The support (Optional) or the consulting
(formal and remunerated) provided by PFD must be the counterpoint to
the predominance of the professionals in the medical model, which does
not mean that they can not participate, but that they have to leave
leadership to the PFD. The existence of peer consulting is, also, a
guarantee of quality to make that the determination of hours and the
personal assistance management be adequate and accurate and to
avoid fraud.
5. The freedom that provides personal assistance should not be
financially assumed by the person with functional diversity.
Although it may seem strange, is not a question of economical nature but
of equal opportunities. If the resources needed to obtain freedom and
equality that others enjoy "costs money", the person is placed in a
starting point that is not equal to the rest of the people. The goal is
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
reaching the point where the PFD are in comparable conditions to the
rest of the community. From there, will be the responsibility of the PFD,
their interests and subjective ambitions, that will determine the course of
their lives. Starting from a situation in which, to be free, the economic
capacity of the person is undermined, it has the consequence of a clear
inequality of conditions and opportunities.
6. Must be balanced the economical benefits in order to compensate
the extraordinary expense that involves a discriminatory
environment. Even once covered the most "obvious" extraordinary
expenses which involves functional diversity (personal assistance and
technical aids), many PFD are still subject to a permanent economic
suffocation, since "ordinary" expenditure, that also have other citizens,
are much higher. This is because the access to goods and services
(transport, accommodation, clothing, food,...) is restricted by the lack of
accessibility and universal design, dramatically decreasing the PFD
options, which often are doomed to the most expensive in the
market. This tool can be materialized in actions aimed to influence the
policies of economic benefits of this nature in the environment where the
project is located, or through practical measures of support in searching
for obtaining this type of economic benefits.
7.2.4. Supported principles and demands
Dignity
Self-determination
Community life
Independent
living
Equal opportunities
Children
Public voice
Political voice
Self management
Personal assistance
Control of
Resources (direct
payment)
PAs training
peer Support
(emancipation)
Balanced adequacy
income
Non-discrimination
(age, type of
diversity)
7.3 Person centered
7.3.1. Definition:
Independent Living projects are mere instruments at the service of the
PFD, they are not goals in themselves. The PFDs must be owners of their
lives in the same way (no more, no less) than the rest of their peers without
diversity. Therefore, it has to be ensured that they must and they can make
decisions and that the control of projects, services, and organization are
in hands of the PFDs.
7.3.2. Justification:
There is a tendency to take care and protect the PFDs. Even in initiatives
developed by the collective itself, there is a classification between those who
are "able" and those who are not. It is very common to disallow that the
decision of "being able" or "wanting to" can be taken by the own person, but
by those who have assigned themselves that capacity. In terms of personal
development this behaviour is devastating. The responsability is a learned
Page 20 / 35
ability which involves the risk of making mistakes and the obligation to
assume the consequences.
7.3.3. Indicators:
This concept has to lead the Independent Living projects to meet the
following conditions:
1. The entity that manages and coordinates (offices of
independent living, cooperatives or any other formula), if any,
must be led by people with actual experience in IL. This does
not imply that there are no people without functional diversity
working or collaborating. This is a condition which is consistent
with the concept of Independent Living and with what happens in
other areas of society (women, gays).
2. The person who coordinates the services has to be user of
them. This is especially relevant in the case of personal
assistance services, because that allows understanding and,
therefore, managing situations that others might consider
irrelevant or incomprehensible.
3. Control of Resources (direct payment). The PFD should be free
to choose the provider that administratively manage his individual
budget and, above all, to decide how and when it is used this
budget. In particular, must always be the PFD decision the
selection, training, direction, organization and hiring/dismissal of
their PA's. The payment of the benefit has to be received by the
PDF or, when appropriate, by the father, mother, mediator or any
other figure. Must exist alternatives to this modality, as it may be
the case of cooperatives of users. Anyway, the truly important
thing is to make sure that the person with functional diversity is
recognized in fact to have the control over his personal
assistance in any case. Direct payment has to be considered
more than a question of economic management, which also it is,
but a control tool that allows decision and management over
personal assistance, basically.
4. Codecision: self-determination of the needs and the needed
supports. The PFD Should be recognized as the best (if not the
only) expert on his assistance needs and on what resources are
most suitable to meet these needs. In particular, must be the own
PFD which determines how many hours of PA needs,
subsequently establishing a process of co-decision with the
administration. The arguments of both parties to clarify the
appropriate number will be based on the principles and demands
that must collect any Independent Living project, in any case one
of the parties may make the final decision in the absence of an
agreement with the other party.
5. Participation mechanisms. In addition to the direct presence of
people with functional diversity in the control and management,
must exist mechanisms for users of the services to actively
participate in them. This is to minimize the delegation in others of
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
the responsibilities of the users themselves. A project of
Independent Living is not a project of someones for another
ones. The own users of services should participate in them.
7.3.4. Supported principles and demands
Self-determination
Non-discrimination
Community life
Independent
living
Equal opportunities
Self-management
Control of
Resources (direct
payment)
peer Support
(emancipation)
PAs training
Codecision
8. Prioritization, weighting and evaluation of indicators
If an independent life project does not manage services of personal assistance
to children or elderly people, or if only manages personal assistance for persons
with visual functional diversity, can not be catalogued as "independent life"?.
Logically this should not be so. However, there are indicators that, if not
present, increase the distance of a project or initiative to an ideal "independent
living" project. Not all indicators are of equal significance. Thus, in the absence
of Control of Resources (direct payment) and an amount of hours enough for
the person, drastically diminish its ability to decide about his life and to live in
equal opportunities, while the fact that mechanisms are not adopted to achieve
technical aids may be less relevant, if such a mechanism is already covered by
other means (health systems, traditional associations, etc.). Therefore, some
indicators must have a weight greater than others.
On the other hand, these indicators should have different values, depending on
how close they are from the ideal value that should have every indicator.
Two things concerning the indicators should therefore be defined:

Set different types of indicators, and the value that can be taken respect
to the ideal value, defined as 100 for each of them.

Prioritize and give a relative weight to indicators, based on its importance
to guarantee the principles and demands exposed previously.
8.1 Indicators
First let's see again the summary list of indicators and let’s put a short name to
each indicator, to work with them with more comfort in the rest of the document:
Page 22 / 35
Indicator
Short name
The PA hours have to be aimed at the
realization of all kinds of activities
Community life
personal assistance (PA) hours have to be
that the PFD will need
Enough hours
Be opened to any PFD, regardless of their
life project
Life project
are taken Support actions to obtain a
house.
Housing
are taken Support actions to achieve
technical aids.
Technical aids
Be opened to the participation of all the
people with functional diversity
Transversality
Be opened to the participation of all the
PFD without taking their age into account.
Age
Offer training in diversity philosophy and
Independent Living philosophy.
Training
Provide opportunities and resources for
support and consulting among peers.
Peer support
Freedom that provides personal assistance
should not be economically assumed by
the person with functional diversity.
No co-payment
Economic benefits must be weighed to
compensate the extraordinary expense
which
involves
a
discriminatory
environment
Financial benefit
The entity that manages and coordinates
(offices of independent living, cooperatives
or any other formula), if any, must be led by
people with actual experience in IL.
Coordinated by PFD
The person who coordinates the services
has to be user of them.
Participant Coordinator
Control of resources (direct payment).
Co-decision: Self-determination of needs
and the necessary support.
Participation mechanisms.
Table 3. Short names of the indicators
Control of resources
Codecision
Participation
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
8.2 Types of indicators and their values
We are based on the idea that the maximum value that can have a certain
indicator is 100 points. However, when you try to give values to the indicators,
can be seen straight away that there are different types of them by giving them
a value relative to its ideal or maximum value.

Proportional - indicators If the ideal or maximum number of hours of
personal assistance that provides an independent life project is 24, and
we assign to that number of hours the value of 100, the indicator takes a
value of 50 if the maximum number is 12 or 66 if the maximum number of
hours is 16. This type of proportional indicators varies between many
possible values.

Indicators with specific values -There are indicators that only take
specific values. Thus, for example, the indicator Control of resources
(direct payment) will take the value of 100 if the user can choose
between receiving directly payment to hire himself their PA's, or receiving
an individualized budget to hire them through a cooperative of users or
similar. It will take a lower value if it remains in control but the user
cannot choose how to hire their PA's, and another much lower if he/she
don't have control over the personal assistance. The values that are
assigned to each option are subjective and are decided in this same
document, depending on the discretion of the authors. In this case, the
three possible values are (100, 75, 0). These indicators, which can only
have specific values are called indicators of specific values (ordinal
measurement scale).

Binary indicators - there are indicators that can only have a value: true
or false. For example, it is true that an independent life project is
coordinated by a PFD user of PA or not. This type of indicators will be
called binary indicators, and its value will be 100 if they are true and 0 if
it is false.
Let’s move on to determine the type of indicator that corresponds to each of the
fifteen in the list, and to make a proposal about how to calculate them or what
specific values can they take.
Page 24 / 35
Short name
Indicator
type
Possible values or way of calculation
100 – Work, studies, leisure, other activities
Community
life
Specific
values
75 – Only three of the four concepts
50 – Only two of the four concepts
25 – Only one of the four concepts
100 – 24 hours or more
Enough
hours15
Proportional
Life project
Binary
Housing
Binary
Technical
aids
Specific
values
(Nh/30) x 100 – being Nh the maximum
number of hours
100 – Does not require a particular life project
0 – Requires a particular life project
100 – True
0 – False
100 – All kinds of technical aids
30 – Only some technical aids
0 – Without technical aids program
100 – Physical, mental, intellectual, visual
and hearing diversity.
Specific
Transversality
values
80 – Only four of the five diversities.
60 – Only three of the five diversities.
40 – Only two of the five diversities.
20 – Only one of the five diversities.
100 – No age limit
Age
Specific
values
50 – Just above age of majority
0 – With more age restrictions
100 – Given by participants in the project
Training
Peer support
15
Specific
values
Specific
50 – Given by PFD's with experience in IL
that does not participate in the project
0 – Without training or given by people
without experience in IL
100 – Peer support and consulting
Even when the indicator 'enough hours', theoretically, should not be limited, we have
considered a practical limit of 30 hours, that will help us when performing calculations. Even
though very few people are going to need 30 hours of attendance, if that cases may occur in
which, for one reason or another, for a certain number of hours required the presence of 2 or 3
personal assistants at the same time. Therefore, the actual number of hours can be more than
24. The concept of 'hours' handled in this document refers to hours of personal assistance
rather than ‘time hours’.
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
values
75 – Only peer consulting
40 – Only peer support
0 – None
100 – No co-payment
No copayment
Proportional
Economical
benefit
Binary
Coordinated
by PFD
Binary
Participant
Coordinator
Binary
2 Points are subtracted for each 1% of copayment established
100 – True
0 – False
100 – True
0 – False
100 – True
0 – False
100 – Free choice to hire directly or through
cooperative/entity
Control of
resources
Specific
values
50 – Forced hiring mode, can be decided the
selection, training, organization and
hiring/dismissal of PA's
25 – Forced hiring mode, and with some
restriction in the selection, training,
organization and hiring/dismissal of PA's
0 - Forced hiring mode, Without user control
Codecision
Participation
Binary
Specific
values
100 – True
0 – False
100 – Clear, accurate and effective means of
participation of the users in the IL project
40 – Participation of users but with limitations
0 – No means of participation
Table 4. Types and range of indicators
Page 26 / 35
8.3 Indicators Weighting
As mentioned previously, not all the indicators have the same relevance, and
should not weigh the same when pondering how much a project of independent
living is close to the ideal IL project.
To establish these weights must be taken into account how much such
indicators support compliance with principles and demands, how much they
contribute to the three proposed fundamental changes and, inevitably, what
indicates the experience about the relevance of the weight of
each indicator. The result, which is proposed below, can be refined in the future,
as the experience in projects of independent living and its impact on the lives of
the PFD will grow.
First we establish its perceived priority:
Short name
Priority
Community life
2
Enough hours
1
Life project
12
Housing
15
Technical aids
16
Transversality
11
Age
10
Training
4
Peer support
5
No co-payment
6
Economical benefit
14
Coordinated by PFD
9
Participant Coordinator
8
Control of resources
3
Codecision
7
Participation
13
Table 5. Priority of indicators
Once priorities have been established, it’s perceived that the six early indicators
are more focused on supporting basic principles, more important and easier to
prioritize, while the rest are more oriented to meet demands of an importance
not so high, also they can’t be prioritized among themselves.
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
Bearing in mind the foregoing, below they are sorted, by assigning them a
specific weight based on that order and on if they support principles or
demands:
Priority
Short name
Specific weight
or weight
1.
Enough hours
150% (1.5)
2.
Community life
150% (1.5)
3.
Control of resources
100% (1.0)
4.
Training
100% (1.0)
5.
Peer support
100% (1.0)
6.
No co-payment
60% (0.60)
7.
Codecision
50% (0.50)
8.
Participant Coordinator
50% (0.50)
9.
Coordinated by PFD
40% (0.40)
10.
Age
40% (0.40)
11.
Transversality
40% (0.40)
12.
Life project
40% (0.40)
13.
Participation
40% (0.40)
14.
Economical benefit
10% (0.10)
15.
Housing
10% (0.10)
16.
Technical aids
10% (0.10)
Table 6. Weighting of indicators
8.4 Justification of the weighting
In spite of looking for objective valuation elements, such as support to principles
or demands, or the contribution of the support for the three proposed changes,
in every prioritization is introduced a subjective element.
However, is clear that the ultimate goal is equal opportunities, which implies that
a person with functional diversity can bring, to the extent that their moral
autonomy permittes, a life similar to the rest of the people.
To achieve this goal, the hours of personal assistance must remain as much as
needed by the PFD, depending on their life projects, which is usually linked to
their age, and that the rest of the citizenry develop by living in community.
This idea should be applicable to all types of diversity, because if not its violated
the principle of non-discrimination and, for the same reason, to people of all
ages.
Page 28 / 35
In addition, given that the rest of the citizenry has control of his own life after a
certain age, should be promoted the control, depending on the age and
diversity, what is achieved through the control of resources (direct payment).
On the other hand, if exists a co-payment, the person is being made
responsible for its difference since, in addition to paying his taxes like the rest of
the citizens, he is forced to repay for their difference, in a clear act of
discrimination and contrary to the principle of equal opportunities.
The other indicators serve as a support to the above, but do not contribute so
strongly to the upkeep of the principles, equality of opportunities and nondiscrimination and therefore are weighted in a lower value, the same for all of
them.
Separate comment deserves housing, weighted adequacy income (economic
benefit) and technical aids, although they are essential to be able to lead an
independent life in equal opportunities, they are not direct responsibility of an
independent life project because, at least in Spain, they must be provided (and
in some cases it’s true) by housing, pension, health or social services
policies. However, and waiting for these policies to reach all PFD, their
indicators are weighted with lower value than the previous ones.
9. Independent living indicator
The final indicator of an independent life project is obtained by following these
steps:
1. Assign a value to each indicator individually, using for this purpose the
concepts provided in table 4. "Types and range of indicators", thus
obtaining the Valued Individual Indicator (Vii) .
2. Multiply the value of each indicator by the weighting factor indicated in
table 6. Weighting of indicators, thus obtaining the Weighted Individual
Indicator (Wii) .
3. Add all the weighted values of each indicator, thus obtaining the NonHomogeneous Indicator Of The Independent Living Project
(NHIPIL).
4. Knowing that the ideal maximum total value of a project of independent
living is 990, divide the non-homogeneous indicator of the independent
living project by 990, thus obtaining an Independent Living Indicator
(ILI), that indicates a percentage of proximity to the ideal project.
5. If the above steps are repeated with various projects of independent
living, you will be able to compare one initiatives with anothers.
Note that Valued Individual Indicators (Viis) are very useful, since they can
be used to detect the weaknesses of a given project.
10. The tool
As already stated above, the objective of this document is to determine those
key indicators that determine the degree of proximity of a project of independent
living to one that the authors considered "ideal". Also a global indicator is
obtained, the independent living indicator (ILI), which is intended to be a
summary of the above.
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
To assist in this process, it has been designed a small calculation tool that helps
to determine the values, This tool is located in the Excel file "Spreadsheet
annexed to the document independent living indicators" which must always
accompany this document.
The general aspect of this tool is as follows:
Illustration 1. Overall appearance of the spreadsheet
10.1 Basic structure
There are basically two types of cells. Some, shaded in grey, generate values
automatically, requires no data entry, others, do not allow user access to
them. The ones with white background require user input. When you click on
these latest a window is unfolded, with information of the kind of data that is
required, as shown in the previous image.
The excel file contains, in addition to the calculation tool, other information that
facilitates the entry of data: A table with a summary of the "Types and values of
the indicators", and another table with "Information on indicators". These sheets
are accessed by clicking on the bottom of the worksheet. This information has
been placed here to avoid having to read this document as a reminder.
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Illustration 2. Tabs to open the other sheets
In turn, there are two values that are "special": the co-paying percentage and
the average maximum number of hours of personal assistance per day. These
two values are entered in the first place, that’s why they are found at the
beginning of the worksheet:
Illustration 3. Two preliminary data that have to enter
In the event presented in graphic 2, the user inputs a co-payment percentage of
0% and the maximum daily hours that allows the IL project in question is 10.
Putting in these data, two of the indexes handled, takes a value based on a
formula:
Illustration 4. Values adopted by the indicators Valued Individual Indicator (Vii) and
Weighted Individual Indicator (Wii)
Then we ask for the name of the project that is being evaluated, i.e., to replace
the name "Project X" included by default by the proper and complete name.
It’s been attempted to make easier the introduction of data. When you click with
the left button of the mouse on a cell with white background, a window appears
with information about the data that must be entered and, in addition, appears
to the right of the cell a small square with an arrow which, when you click on it,
displays a list with all possible values supported in that cell. By selecting the
desired value, it is inserted into the cell. Data can also be manually entered in
the cell. In this case you have the risk of entering a value not allowed or
erroneous. When this occurs an error message is displayed.
Illustration 5. Entering a not allowed value
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
If you put 0 in the maximum hours, it comes out an error message and the
introduction of this data is not allowed. It makes no sense that a project of
independent living has 0 hours of daily personal attendance.
Illustration 6. Example of error message
Let's look at an example. If we click with the left mouse button on the cell
relative to the "Transversality" indicator, appears an information box (as seen in
illustration 7) and an arrow that displays a list with the values 100, 80, 60, 40
and 20. By selecting 20, this value is entered in the cell.
Illustration 7. information window and list of data
In this way we will introduce the needed data to fill every cell. As we complete
the worksheet, the cells corresponding to the Non-Homogeneous Indicator Of
The Project of Independent Living (NHIPIL) and the independent living indicator
(ILI) changes their values.
Page 32 / 35
Let's look at an example of full calculation worksheet:
Illustration 8. Sample calculation sheet filled in
In this case, we see that the overall evaluation of the project is 56,92%, i.e.,
despite having an acceptable daily number of personal assistance hours and a
co-paying rate relatively low (15%), still exists a 43%, approximately, to become
an ideal project. This is because the independent living indicator (ILI) pretends
to have a globalizing character, and looks at the project from a perspective that
goes beyond a simple supply of hours of personal assistance and the money for
it. Training, transversality, participation, co-determination and other factors must
Independent Living Indicators (ILI) for evaluating policies and actions developed under the IL philosophy
also be present and play a role in the evaluation of an independent living
project.
10.2 Use of this tool
It is intended, as stated above, to hava a tool that allows to dispassionately
evaluate an independent living project, and indirectly, to have a tool that helps
to remember important aspects in the design phase of projects or services, both
public and private initiative. For this purpose, a few indicators have been
defined, that in their maximum values determine an ‘ideal’ project. Not to reach
"perfection", i.e., a 100% ILI, doesn't mean that the project is bad or useless,
means that there are aspects of it that might require an improvement or revision
in the future.
Anyway, there are aspects that the authors have tried to avoid: the possibility of
playing with the numbers to obtain a high ILI, putting emphasis on less relevant
aspects and "being mean" in most fundamental aspects. In this, an important
role is played by the weighting, i.e. multiply valued Individual indicator (Vii) by a
number (weighting index) to have certain values to give them more
"importance" in the calculation of the ILI and that others, had less, giving as a
result the different weighted individual indicators (Wii). Example of this are the
indicators "Enough hours" and "Community life", to ensure them to acquire
greater weight, they are multiplied by 1.5, or "Housing" and "Technical aids",
multiplied by 0.1 to reduce his influence.
During the creation of the tool, however, it was estimated that this was not
enough. So we decided to "compensate" the Vii of the indicators 'Enough hours'
and 'no co-payment", before calculating the weighted Individual indicator
(Wii). It could be said that there is a double weighting in these two cases.
However, it should not be forgotten that this is a proposal that will have to be
tested and, we hope, it will open a process of reflection and new proposals that
would substantially improve this initial work.
11. Bibliography

«Declaration on the Right and Responsibility of Individuals, Groups and
Organs of Society to Promote and Protect Universally Recognized
Human Rights and Fundamental Freedoms». (1999). Document
A/RES/53/144 from United Nations (UN).

«Convention on the Rights of Persons with Disabilities and its Optional
Protocol». (2006). United Nations (UN).

«LAW 51 of December 2, 2003, on equal opportunities, nondiscrimination and universal access of people with disabilities». (2003).

«ACT 39/2006, of 14th December, on the Promotion of Personal
Autonomy and Care for Dependent Persons». (2006).

«Manifiesto del Foro
Independiente. (2002).

«ECEPA National Policy Model for Personal Assistance». European
Center for Excellence on Personal Assistance. (2004).
Page 34 / 35
de
Vida
Independiente».
Foro
de
Vida

LOBATO M., ROMAÑACH J. (2005). «Diversidad funcional, nuevo
término para la lucha por la dignidad en la diversidad del ser humano».
Foro de Vida Independiente.

PALACIOS A., ROMAÑACH J. (2006). «El modelo de la diversidad. La
Bioética y los Derechos Humanos como herramientas para alcanzar la
plena dignidad en la diversidad funcional». Ediciones Diversitas - AIES.