Kenora Association for Community Living
Policy on
Individual Planning, Support and Funding Approaches Policy
Analysis Paper
November 1 2000
Purpose
The purpose of this paper is to summarize
Association's policy and positions on various topics involved in personal
planning, support and funding.
Background
Association policy in this area began to be
developed in the late Eighties. The resolutions of various discussions were
captured in policy by the Association's Second Service Delivery Principle and
its corollary principles (See Schedule A). While implementation of these
principles is far from complete, there has been no serious challenge of the
rightness of the Association's policy on this issue. As well, the Association
has endorsed the MCSS's former Northern Regional's Individualized Approaches
Project Team's (IAPT) principles (See schedule B). The Individualized
Approaches Project Team's report entitled Shifting Power and Control: Moving
From Programs to Supports, suggests that the principles emerged from
promising practices across the North, from meetings with a range of
stakeholders and from the literature review.
The Policies were re-examined following a
weekend retreat in the mid-nineties along with other policies being
concurrently developed including Residential Options, Life Sharing and Shared
Responsibilities Policies of the Association. Certain policies were enacted at
that time that were summarized in a paper entitled Individual Planning, Support
and Funding Approaches.
In April 1997, the Ministry of Community and
Social Services released its paper entitled Making Services Work for People,
A new framework for children and for people with developmental disabilities.
This paper spoke to many of the issues then being looked at by the Association
and in particular spoke of four shifts in direction of government and nine
goals (See Appendix D)
Individualized Planning
The Association's second service delivery
principle is at the core of individual planning. Acceptance of the second
principle or individual approaches in principle may be a great deal easier,
than achievement into practice. It requires the delivery of flexible supports,
services and training tailored to and for individuals rather than programs
which individuals must fit into. Programs are dismantled in favour of supports,
services and training which are created to support the consumers in making and
acting on choices. The starting point is person-centred planning and the
determination of valued outcomes.
What is Personal
Planning?
What is personal planning? So many definitions abound that one must clarify what one means when one uses the term. The following elements are included in the concept:
Existing KACL Policies
and Endorsements for Personal and Individual planning
2(a). Principle of individualization
The individual must be the focus in the
planning, development and delivery of human services and supports...each person
has the basic human right and the freedom to have his/her capabilities,
interests and needs used as the basis for planning, development and delivery of
services and work, play and worship in their community or neighbourhood.
2(b). Principle of individual case
management and individual program planning
Individual case management and
individual program plans must be prepared in such a way as to ensure that the
individual concerned has opportunities to live a meaningful and satisfying
lifestyle and to interact as an equal in their community with opportunities for
personal growth through education and training.
2(c). Principle of self-determination
and control
Every individual has the right to be as
fully in control of their life as possible. To the degree that individuals have
the ability to choose between alternatives they are responsible for their
actions.
IAPT Principles:
6. Person centred planning must
reflect and respect the desires, strengths, and dreams of the
individual, which are identified by the person and the people the person
has chosen to be part of planning.
A first principle of empowerment is that one
empowers others by giving them a clear understanding of the responsibilities of
the job they assume in making choices. It is not always easy to give up power.
It is also not always easy to accept the responsibility - the price of getting
power. It requires the acceptance of the idea that a person (with or without
assistance) should decide what roads they are to travel and with whom they will
travel. It may or may not be with KACL. It also requires acceptance by the
person, his or her family and friends that they and not KACL are responsible
for the choices they make on their own behalf or on behalf of the person for
whom the choice is made. Parents, families and friends must also accept that
they may not always be in agreement or even share the values of the person whom
they are supporting. What is in the consumer's interest may not be in the
supporter's interest. Choice to the dependent citizen, at times, may require
such other persons, to distinguish between their desires and interests and the
desire and interest of the person they are supporting. Such duty is called a
fiduciary duty.
IATP Principle:
7. Power and control for
deciding plans and directing supports should rest primarily with the
individual, assisted as appropriate by the individual's family and friends
chosen by the person.
8. Access to choices, making
choices, and opportunity to take risks and make mistakes should
be an integral part of planning and supporting individuals.
Why has personal
planning not been extremely effective in the past?
The Association has been involved, at least
since the early Eighties, in a variety of personal planning systems. Initial
efforts were proposed by Government and were characterized by various
deficiencies:
(1) They either
were designed or were interpreted to be rigid mechanical systems. They assumed
that there was one right way of personally planning for every one.
(2) They were
either designed or were interpreted to emphasize the negative, weaknesses of
consumers or to place emphasis on needs and deficiencies.
(3) Often they
were based on assumed standard desirable traits or characteristics rather than
on dreams, desires or aspirations of consumers.
(4) They were
tailored to a professional staff rather than for use by consumers, families and
personal support networks.
(5) Families had
considerable difficulty distinguishing within themselves between the dreams,
desires and aspirations, or pain of other members of the family and the wants,
dreams, desires and pain of the person who is the subject of the personal plan.
Such planning systems were at times perceived
as useless, or worse - a negative and depressing experience for all concerned.
With the adoption of the Association's
mission statement and service delivery principles, Government systems were
rejected and the Association staff looked for new and innovative approaches to
planning and have had mixed success. Problems that continue to exist at least
at some points throughout the organization include:
Lack of consumer
involvement or consumer commitment to any process
Little involvement
from families. Many families do not know their children like they think they
do. They do not appreciate or value the planning process.
Planning dominated
by staff. Lack of commitment from staff. Lack of knowledge of consumers.
Planning not grounded in the consumer involved. Planning based on staff's
perceptions of what the consumer needed, rather than what the consumer desired.
Planning systems tend to create dependencies rather than enriching growth and
development opportunities.
Insufficient
supervision of staff around planning. Without profound commitment to
empowerment or supervision, some staff has turned every system devised to date
into a rigid, mechanical system. Such staff is insensitive to what a personal
and vulnerable process, personal planning is.
Poor
follow-through from planning, to achievement and review.
Role of various players in planning
Various players have been identified in the
process of planning and supporting individuals: consumer, parent and siblings
and personal support network including friends close acquaintances and lovers.
Some are referred to in the Association's principle of family and community
involvement:
3(a). Principle of Family and Community
Involvement
Ensuring the right of all persons with
special needs to participate in all aspects of living, learning, working and
playing is a shared responsibility among parents, siblings, friends and the
association (including its paid staff and volunteers). All must be encouraged
to be actively involved in the life of such persons.
Consumer
The one for whom planning is done. It is this
person and not staff or family that we are planning for. Sometimes
implementation of planning and supports for the consumer require extensive work
to be done in helping other family members in planning for themselves. In a personal
plan, "the plan", is the plan of the individual and not the
Association's plan for its support for the individual.
Parent and Adult Siblings
Parents play the most crucial role in their
children's life. They represent continuity. They most likely reflect many
values that the child has absorbed early in life. They are the most vigilant
personal advocates. They provide the greatest support, yet at other times, the
greatest obstacle to free choice.
Many siblings, especially as the parents grow
older, take on many of the parent's role. All siblings do not participate
equally and some are totally uninvolved.
Various issues in the area of individualized
supports concern the relationship of the consumer to his or her family and the
role that the family may play in it. Many parents and siblings have little
current involvement in their child's day-to-day life. In certain instances this
may be due to parents moving away from the community or it may be due to the
child's separation from the family as a result of years of
institutionalization. In other circumstances Parents are unable or unwilling to
recognize that their dreams, aspirations and desires as well as nightmares, are
not the same as their children (sometimes referred to as "boundary
problems"). They may be stuck in the past. They are often, as one parent
described herself, an OPSNP: over protective sticky nose parent. Conflict,
vocal as well suppressed may exist between parent and child. People First
recommend that individual funding projects should ensure that parents with
disabled children who are adults respect their son or daughter's choices.
People First have begun to provide an education role in this area. An advocate
from Advocacy Ontario may also play a role in conflict between consumer and
parent.
Additional issues arise with life sharing and
co-lifesharing. Life sharing is an example where staff is replaced by some one
who wants to share their life with the individual concerned. Co-lifesharing
takes place where one person lives with more than one independent family unit.
Both are, at times, rejected as a possibility by the families and associations
for the following reasons:
1. Some families
may doubt that the requisite degree of accountability is present in the
life-sharing arrangement.
2. Some families
may not be prepared to rock the boat or adopt the risk inherent in disrupting
the status quo.
3. Some families
may doubt that one life sharer can provide the range of support as can
professional staff.
4. Families are
threatened by the life sharer - that the life sharer will replace the family as
his or her primary emotional support. This may not be an unrealistic
expectation. Such life sharer is not unlike a spouse or very close friendship.
It is reasonable to expect that emotional attachments will continue to grow and
develop with continued co-living arrangement. The family must choose between
the higher quality of life that their loved one will enjoy and their feelings
of lost dependency.
5. Some families
do not appreciate their children's gifts as much as others and find it too
difficult to believe that anyone would wish to live with their child except to
exploit the child. Therefore, they believe they are acting in the best interest
of their child by depriving him or her of this opportunity.
6. Some family
members treat Association staff as their support group and may feel that the
life sharer may not meet their needs in a similar fashion.
7. Some families
have become dependent on the additional income brought in by the child (FBA)
and do not believe they can adapt with lesser income.
In all such cases, the association's staff
must play the role of wise counsel, helping both the individual consumer and
family to see the situation clearly and to make the decision with which they
are comfortable. The situation cannot be forced. If the consumer has capacity,
he or she may decide with whom they wish to share their lives. It is highly
desirable to have the family's concurrence.
Friends, Close Acquaintances and Lovers
(Personal Support Network)
Friends and personal supporters beyond the
family can and do play an increasing role from school age on. For
non-handicapped persons at some point they replace parent and family as primary
personal supports, advocates and confidants. The same pattern appears to be the
case where "handicapped" children are integrated in the mainstream.
Many writers have commented that the only handicap is the absence of
relationships. (Forrest, Pearpoint, Pearske). Friends and siblings are often
the most effective advocates for consumers in issues involving overprotective
parents.
The Committed Champion
A role that has recently been identified
through the Association's experience has been dubbed the committed champion
(Beth Mount). This person may be a parent, a family member, friend or staff who
takes a particular interest in propelling a person through the system, thus
securing the best possible situation for that person. While such person either
knows the system or quickly comes to know it, their main interest is changing
the system or making the existing system work for their person.
Staff
Staffs are paid supporters. In exchange for
money, they provide various services for the person or system. Staff may also
play other roles, as parents, friends, committed champions etc. The fact such
persons are also staff, should not distract from the alternative role they
play. It is highly desirable that the various roles, played by the same person,
be recognized for what they are. For example, as staff their responsibility to
the person may be to help the person attract other friends. As unpaid friends,
off duty, they may share their time together without primary job duty as
community connectors at stake. Further, a parent is always a parent. Thus
staff-parents, not withstanding that they may have gained certain expertise
from their job as staff, serve their own children as parents and not as staff.
The argument for including staff (as staff)
in planning is that they must be involved in the implementation stage. The
argument for their exclusion is that they monopolize the planning process and
act in their own interest. The tentative view is that they should be invited to
attend on a voluntary, non- paid basis but only a key person such as a
supervisor or paid staff facilitator should attend in paid capacity.
Should planning for services be delivered
by other than those who provide support services? Who pays for planning when a
fixed point of access is not established?
Service Brokerage
Service brokers are one idea that has evolved
to advise consumers as to available services and supports available within a
community. People First have strongly recommended that the personal planner and
service broker not be attached to existing associations or agencies who provide
services. Nor do they believe that board members or staff from service provider
associations or agencies should be allowed to sit on the community board that
oversees personal planners and service brokerage. Including service broker and
services delivery in one agency is perceived to be an unacceptable conflict of
interest.
The conflict is obvious. Yet, having both the
planner of services and the provider of services is not an unusual concept in
business and other service areas. Dollars go to or are spent on behalf of a
consumer. The individual or “someone else” may manage such dollars. The
person should be free to choose one association or agency to provide one
service, such as planning and go to another for another service, or choose one
to provide both.
Individual
Supports
Once person-centred planning is completed,
necessary personal supports are identified and secured within financial, human
and other resource constraints. An important component in the individual
receiving the individualized planning, supports and delivery of service, and
successfully realizing a meaningful and satisfying lifestyle, is the choice of
service provider, the "committed champion" and personal and community
support networks.
Individualized supports consider the issue of
delivery model of services or the method by which services and supports are
delivered to consumers.
People First have identified four main issues
to think about when putting together a system that supports people with
developmental disabilities:
1) People must
have choice
2) People have the
right to make mistakes
If a person makes
a decision that others feel is not the right one, this does not mean that he or
she should not follow through with it. We all learn by our mistakes, and what
others may feel is a mistake may, in fact, be the right choice.
3) People have the
right to take control of their life (This is often called personal
empowerment).
4) The system must
be consumer directed instead of just having consumer involvement.
Family members as Service providers?
This issue has arisen with increasing
frequently in recent years. To the Association's knowledge, every Provincial
government has policies, guidelines or "strong bias" which preclude
provincial funding to be use to hire near relative to provide supports that are
specifically directed to disabilities.
The Ontario Ministry of Community and Social
Services who provide the funding have such strong bias and have indicated them
to the Association. A challenge of such a position has been brought before the
BC Human Rights commission.
Quite apart from MCSS direction issues have
been raised internal to the Association:
Would funding to hire family members as
employees increase or decrease the quality of life of the individual? Would it
increase or decrease the number of persons involved in the life of the
consumer. Does the transfer of cash cheapen such relationships and actually
continue to support surrounding consumers with "paid staff"? Will
paying family members to support their children, increase the likelihood of
their children being segregated or increase the likelihood of their staying in
the community? Will paying family members divert funding that would otherwise
be available to others or save more expensive services? Should a different
level of funding be paid to family members than to strangers? These issues have
not been conclusively resolved to date and the Association has taken no broad
policy position. It has adopted a policy for each funding program:
It is inappropriate for a service
provider, either an association or a family member, to hire or contract with a
family member to carry out duties for remuneration under individualized living
funding programs. For the purposes
of this policy family means persons related by kinship as recognized in law but
limited to: spouses, parents, siblings, grandparents, children, grandchildren,
aunts, uncles and cousins, and including step-parents, step siblings and
"in laws" where there has been a settled intention to treat the
individual as a member of the family.
Are generic services necessarily superior
to services provided by specialized agencies such as KACL?
For financial reasons for all future service,
staffs is taught to,
(1) Look to the
individual to become independent in living, learning, working and playing in
the community.
(2) Where support
is necessary and possible, family and friends will be asked to provide
necessary support,
(3) Next, the
volunteer community,
(4) Next, generic
service agencies,
(5) Finally
specialized services.
There is a current notion that generic
services will prevent staff created dependencies and segregated services. They
may. Unfortunately, presently, often when generic services providers are used,
individuals merely get specialized segregated programs. Such segregated
programs provided by generic agencies are not as superior as programs with an
inclusion bias delivered by specialized agencies.
Guardians, Trustees and Next of Kin
There is a great deal of misunderstanding as
to KACL's responsibilities and role in providing planning and support services.
KACL is not a guardian, a trustee or next of kin. KACL does not bear a
responsibility to assume any more responsibility to provide planning and
supports than that which they undertake to provide. (They are responsible for
keeping their promises). In order to clarify this fact to itself and others, in
the future, an effort will be made to reduce understandings to writing. For
example, see sample memorandum of agreements in schedule D.
Definitions in this area abound. John Lord
(1994) suggests that there are three types of government funding:
* Program
funding primarily geared to group services. Our present lifesharing
arrangements are funded under this scheme of funding.
* Individualized
funding, primarily involving the transfer of funds to the control of an
agency for an individual. Funds pass from Government Ministry to an agency who
provides services or spends money for a specific consumer. Locally in Kenora,
this is called indirect individual funding.
* Direct funding,
primarily involving the transfer of funds to the control of the
individual/family. Funds pass from a Government ministry such as the Ministry
of Community and Social Services or Health to the consumer or family who then
use the funds to purchase services from a service provider (such as KACL) or
person employed for such purposes. The push for direct funding originally came
from the parent movement and is particularly associated with the Province of
British Columbia. As well, individual funding is also associated with efforts
to secure funding to allow an individual to leave institutions.
Subsidized support, services, or training,
are supports, services, or training, which are, at least partly, paid for or
supported by the service provider or its funding agency (MCSS and MOH).
Subsidized support, services or training are an ultimate cost to the public
purse. Examples of fully subsidized services or training include providing
community support workers, paid circle of friends, facilitators and workshop
training provided to non-staff participants.
User fees consist of any payment or partial
payment made by a consumer in exchange for a support, services or training.
Expense recovery is the recovery or partial recovery of expenses paid out on behalf
of a consumer. User fees and expense recovery reduce the costs of supports,
services and training to the public purse. Examples of user fees and partially
subsidized services provided by or funded through KACL include, nursery fees,
and respite care fees. Examples of expense recovery include, fees charged to
external participants of workshops paid for by KACL, gas or mileage paid to
KACL staff to drive consumers locally and out-of-town which is collected from
consumers.
All people in Ontario are entitled to an
equal assurance of life opportunities in a society based on fairness, shared
responsibility, and personal dignity for all. Society has a responsibility for
the well-being of all its members. The support that society provides is not to
be understood as a gift or privilege, nor as charity to the disadvantage.
Rather it represents a right to which all members of society are entitled.
It must also be recognized that total
independence of the system may not be possible for some people. A new system
more oriented toward providing supports and services that will help recipients
participate in education and training and get jobs must not ignore those people
for whom such activities may not be appropriate. Some people who are ill or
disabled may not be able to work, but they may become more involved in
community life, if given the opportunity. The system must be prepared to
support people who are in need in a way that respects their individual dignity
and recognizes society's collective responsibility for the well-being of all
its members.
Individuals have a responsibility to
become, with support where necessary, as self-reliant as possible and to
contribute to community life. We see the obligation of the individual to take
responsibility for his or her own life as the other side of the coin of mutual
responsibility. If the whole of society has a responsibility for individual
well-being, then individually, there must be a responsibility for society as a
whole. That translates into each person making her or his unique contribution
to society's social and economic well-being.
Individuals have a responsibility to
contribute to society to the extent that they are able.
Funding required to support persons requiring
assistance above the amount they can raise for themselves may be divided
between basic needs and disability related needs. Basic needs are currently
provided under Social Assistance Legislation as is called GWA (General Welfare
Assistance) or FBA (Family Benefit Assistance). Such amounts are intended to
cover shelter allowance (rent and basic utilities), clothing, food and basic
survival needs. Such funding is also called "Assistance Provision"
and "demand side funding".
Disability related needs go beyond basic
needs to cover personal supports. Personal supports needs are services required
by virtue of the disability.
Attendant services
that provide assistance with the activities of daily living including personal
hygiene, grooming;
Homemaking
services that help with daily tasks such as home maintenance and cleaning,
laundry, ironing, meal preparation, budgeting, shopping and banking;
Short-term respite
to relieve paid caregivers in case of vacations and emergencies;
Services that
support the process of consumer participation, acceptance and inclusion in
society or the ability to gain employment;
Relationship building;
Recreation and leisure;
Self esteem.
The Association may enter into agreements with an individual client
and/or their family or personal support network, which would flow monies from
the Association directly to the party in order to self administer the
achievement of the identified outcomes.
The consumer must have a person centred
plan consistent with the Association's policy.
The consumer must enter into a contract
with the Association that outlines expected outcomes, cost accountabilities,
etc
The longest term of any contract will be
one year.
The Association may enter contractual
agreements with clients only if funding is available and the expected outcomes
can reasonably be met.
Maximum funding per consumer $50-$1000 per
month Negotiable with each placement option.
Consumer may also apply for Special
Services at Home Funding. Amounts approved by the Association are in addition
to those of Special Services at Home.
Basic needs are provided under an entitlement
regime (ODSP or GWA), which provides conditions for entitlement and guidelines
or standards to decide level of entitlement.
Presently disability related need services
are provided under a resource base regime. Whether services or supports are
provided by way of programs or by individual approaches or funded directly or
indirectly, their availability is decided by allocation of available resources,
with little or no direction from MCSS and MOH. There is no absolute legal right
to entitlement or standard of entitlement to which an individual consumer can
lay claim. If someone is not happy with the level of services they are receiving
from one agency their existing recourse is to complain internally to the
association, to MCSS or MOH and if unsuccessful, attempt to receive superior
services elsewhere. Many families are not clear on this point and assume that
KACL bears a legal (as distinct from a moral or political) duty to provide
complete coverage of disability related needs services. KACL should move
towards clarifying it's role and responsibilities in providing
disability-related services and supports to consumers and families. Such
clarification should be reduced in written "memorandums of
understanding" wherever possible.
At times what is a basic need and what is a
disability related need may be difficult to determine. In line with the philosophy of the
association, wherever an expense would exist whether the individual was handicapped
or not, the Association treats the expense as a basic living expense. It does so because it believes such basic
support should be considered an entitlement – not dependent on the resources
available to a particular service provider.
Monitoring Services provided under
individualized and direct funding.
Accountability is a big problem. In program
funding, KACL chooses who may or may not provide services, or at the very
least, at an Association level, retains a right of veto. The Association may,
as a policy decision, choose not to choose, leaving to the consumer, family or
support circle, the right to choose on the principle that they know the
consumer the best? If the Association does not choose the service provider,
they should not be held accountable for what they do not control.
The Association will monitor the contract
implementation with the client in terms prescribed in the contract.
Where individualized funding is involve
(as opposed to direct funding),
KACL may refuse
to accept a service provider who is considered satisfactory to the citizen, or
the citizen's family but not considered satisfactory to KACL.
KACL may refuse
people who will not endorse our service delivery principles.
KACL has the
right to discontinue funding for persons who abuse it or who refuse to make
reasonable efforts at achieving stated goals or who fail to achieve reasonable
goals.
If KACL chooses to provide services to
persons who have secured direct funding from the Ministry, it is free to
provide conditions upon which the services will be provided, provided such
conditions do not conflict with Human Rights legislation and other provincial
or federal laws.
Proponents of direct funding argue that
accountability is not a problem when direct funding is used since the consumer
and family can leave the service provider if they are not satisfied with the
services. Hence, the most direct form of accountability is present.
Multiple Service Providers
A prerequisite for individualized approaches
working is the ability of the consumer or his network to find a service
provider willing to provide the supports required. At a practical level, this
will not be possible unless there are alternatives to draw services from.
Societal and Organizational Changes
Required to Support Individual Approaches
Several books of late have emphasized that we
live, think and are controlled through institutions. The word
"institutions" and "deinstitutionalization" for KACL has
often referred to what Erving Goffman calls "total institutions"
(Goffman 1961):
A total
institution may be defined as a place of residence and work where a large
number of like-situated individuals, cut off from the wider society for an
appreciable period of time, together lead a closed, formally administered round
of life.
In this paper, the word
"institution" will be used in the sense employed by William Levin
(1988),
Sets of rules that
establish how group members agree to accomplish universal issues of survival,
such as procreation, socialization and care of the young or distribution of
power.
The institutions that develop around these
universal issues rarely deal with just one but rather tend to have multiple
functions. Thus, we have families, government, economic, educational and
religious institutions that cover many functions. Of particular interest to
this paper is the concept of institutions that have been called "mediating
structures". Mediating structures have been defined as those institutions
standing between the individual in his private life and the large institutions
of public life. These include family, neighbourhoods, churches, service clubs,
voluntary associations and volunteers.
Various writers have suggested that
government services should be provided by mediating structures for various
reasons:
To encourage democratic pluralism (Berger
1977)
To decrease inefficient governmental
monopolies
To encourage community
To increase effectiveness
How can the Association increase its efforts
and successes in working with mediating structures such as support networks,
neighbourhoods, community groups etc.?
Keeping track of funding to individuals
What about other funding provided directly by
Government to individuals or through other associations indirectly to
individuals? How does government or individual associations know? Consumers or
their support circle must be required to declare what additional supports they
are receive so that KACL can determine that there is not duplication of
funding.
Staff roles (Draft)
Individualized approaches and/or funding will
require role changes for Staff. Staff
roles required, include:
Service brokers or case managers.
Personal support service workers
Attendant care
Community
connectors
Educators
Supervisors - Supervise above workers
Directors or co-ordinators of supervisors
Behavioural
consultants or expertise co-ordinators - "Knowledge Worker" who
oversee the personal planning (facilitators) and quality of the support
services offered or who provide expertise internally or to outside service
providers (e.g. augmentative communication, vocational specialist)
"Social Worker" - to work with
parents
Administrators -
hate them if you must but you cannot live without them. Administration may also
be farmed out to others agencies or individuals on a purchaser of service or
percentage of expenses administered basis.
An early and most obvious conclusion dawn
form the association’s work with lifesharing is the necessary role of the
knowledge worker. The future will demand less attendant care workers staff as
attendant care work is assumed by life sharers or family. Simultaneously the
number as well as the skill and competency of the knowledge worker will
increase as adjunct support to these individuals.
References
Berger, Peter L. and Richard John Neuhaus
(1977) To Empower People, The Role of Mediating Structures in Public Policy,
Washington: American Enterprise Institute for Public Policy Research, 1977
Goffman, Erving (1961) Asylums, New
York: Double Day, 1961
Individualized Approaches Project Team (1994)
Shifting Power and Control: Moving From Programs to Supports, The
Individualized Approaches Project, Toronto: MCSS, 1994
Levin, William C. (1988) Sociological
Ideas, Concepts and Applications (2nd Edition), Belmont, California:
Wadsworth, Inc. 1988
Lord, John (1994) Individualized
Approaches Project, Working Paper, Unpublished Papers, Northern Region
Individual Approaches Project
Roeher Institute, The G. Allan (1991) The
Power to Choose, An Examination of Service Brokerage and Individualized Funding
as Implemented by Community Living Society, Toronto: The G. Allan Roeher
Institute, 1991
Roeher Institute, The G. Allan (1993) Direct
Dollars, A Study of Individualized Funding in Canada, Toronto: The G. Allan
Roeher Institute, 1993
Schedule
A
2. Everyone is deserving of respect as
individuals.
Corollary principles:
2(a). Principle of individualization
The individual must be the focus in the
planning, development and delivery of human services and supports...each person
has the basic human right and the freedom to have his/her capabilities,
interests and needs used as the basis for planning, development and delivery of
services and work, play and worship in their community or neighbourhood.
2(b). Principle of individual case management
and individual program planning
Individual case management and individual
program plans must be prepared in such a way as to ensure that the individual
concerned has opportunities to live a meaningful and satisfying lifestyle and
to interact as an equal in their community with opportunities for personal
growth through education and training.
2(c). Principle of self-determination and
control
Every individual has the right to be as fully
in control of their life as possible. To the degree that individuals have the
ability to choose between alternatives they are responsible for their actions.
2(d). Principle of promotion of client
autonomy and rights
A human service agency should extend and
support appropriate autonomy for its clients to enable them to exercise their
rights and autonomy responsibly and adaptively.
Schedule
B
Northern Regional's Individualized
Approaches Project Team's (IAPT) Principles
Principles of Fundamental Rights
1. Citizenship must be the basis of an
individualized approach in two respects: the legal rights of citizenship
accorded to all Canadian citizens, and the spirit of citizenship, which involves
membership in community.
2. Individualized approaches should be
available to all citizens with a developmental disability who may require
support, regardless of age, level of disability, or place of dwelling.
Principles of Inclusion, Relationships and
Community
3. Presence and participation
in community life should be central purposes of individual approaches,
including access to the information, resources and relationships offered by
communities.
4. Personal relationships and networks
should be nurtured as part of the development and implementation of
individualized approaches.
5. People who facilitate the
development and implementation of individualized approaches must have an
unwavering commitment to the individual; facilitation also requires
independence and understanding.
Principles of Power and Control
6. Person centred planning must
reflect and respect the desires, strengths, and dreams of the
individual, which are identified by the person and the people the person
has chosen to be part of planning.
7. Power and control for
deciding plans and directing supports should rest primarily with the
individual, assisted as appropriate by the individual's family and friends
chosen by the person.
8. Access to choices, making choices,
and opportunity to take risks and make mistakes should be an
integral part of planning and supporting individuals.
9. Individualized support should be
provided in a flexible manner, based on the person centred plan and the
support needs of the individual.
10. People's options should not be
limited by existing support arrangements or agency providers.
11. Funding resources that are made
available to an individual should be managed by the person and their network or
by a "designated" person or agency.
Appendix C
Making Services Work for People
Four Shifts
|
From: |
|
To: |
|
Services that respond to entrenched problems |
> |
Services that anticipate problems, respond earlier and reduce the need for future services |
|
Services organized by agency |
> |
Services organized to respond to the needs of individuals and families |
|
Changes through growth in funding |
> |
Changes through better services delivery for individuals and families within existing resources |
|
Government responsibility |
> |
Shared responsibilities |
Nine Goals
1. Individuals and families throughout
Ontario will have access to a consistent range of core services for children's
and developmental services.
2. Those most in need will receive essential
supports.
3. Families and individuals will receive
supports earlier.
4. Families and individuals will receive
services that respond to their needs.
5. Families and individuals will receive
services that respond to their needs.
6. Families and individuals will be served by
local systems that make the best use of resources.
7. Local systems will have lower
administration costs.
8. Families and individuals will receive
services that lead to less reliance on government -funded services.
9. Families and individuals will receive a
coordinated set of services funded by the Ministry of Community and Social
Services and other funders when necessary.
Schedule
D
Memorandum
of Understanding
Between
Kenora
Association for Community Living (KACL)
And
Carson
Consumer (Carson)
And
Patricia
and Paul Parents (Patricia and Paul)
And
Suzy
Server (Suzy)
1.
The Kenora Association
for Community Living (KACL) is an incorporated association of members who have
as their mission statement and goal,
To ensure that all
people with special needs have the opportunity to live a meaningful and
satisfying lifestyle and interact as equals in their community by providing
continuing opportunities for personal growth through education, training,
support, advocacy and an informed public
and a set of service delivery principles
found in schedule A of this memorandum.
2.
Carson Consumer
(Carson), a resident of Kenora is desirous of living in the Community in a
state of respect and dignity and has requested certain funding from KACL to do
so.
3.
Patricia and Paul Parents
Parent (Patricia and Paul) are parents of Carson Consumer and are also desirous
of having him live in the Community in a state of respect and dignity. They
accept the Principles of Service Delivery adhered to by KACL and have agreed to
assist Carson to manage his personal moneys to permit him to live in the
community.
4.
Suzy Server is a person
that Patricia and Paul have engaged to provide certain services.
5.
It is necessary to plan
for Carson's support needs, keeping in mind his personal vision for his future.
The growth and development of this positive personal vision requires that
Carson has a support circle that nurtures and keeps the personal vision, first
and foremost in planning appropriate support, and that he has opportunities to
make choices about lifestyle. The members of the support circle who are the
most intimately committed to assisting him fulfil his own vision, must carry
that image of the future as a sacred trust. Patricia and Paul Parents commit
themselves to building a support circle for Carson that will keep Carson's
personal vision to the forefront.
6.
Suzy Server will provide
the following personal supports services and care required by Carson to permit
him to live a meaningful and satisfying lifestyle in the community:
1.
Attendant care training
and services which provide assistance with the activities of daily living
including personal hygiene, grooming (an average of 6 hours per week provided
alone or with other individuals where appropriate;
2.
Homemaking training and
services that help with daily tasks such as home maintenance and cleaning,
laundry, ironing, meal preparation, budgeting, shopping and banking (an average
of 4 hours per week provided alone or with other individuals);
3.
Services which support
the process of consumer participation, acceptance and inclusion in society or
the ability to gain employment (an average of 4 hours per week provided alone
or with other individuals);
4.
Relationship building
5.
Recreation and leisure
6.
Self esteem
7.
Subject to the Ministry
of Community and Social services funding KACL will fund Patricia and Paul up to
the sum of 1000 based at the rate of $10.00 per hours of service.
8.
Patricia and Paul accept
responsibility to continuously move Carson toward his personal vision as it
grows and evolves. The expectation that supports provided result in growth and
development may mean that support priorities shift, decrease or disappear over
time. Patricia and Paul recognize that it is their responsibility to provide
attendant care at other hours in the week. They accept an obligation to move
Carson toward greater community independence (interdependence), and away from
relying on KACL to provide support.
9.
Carson, Patricia and
Paul accepts the responsibility of KACL, as long as it is the relevant funding
agency and the APSW employed by KACL to assure a minimal standard of care and
proper utilization of financial resources and will assist KACL in fulfilling
their responsibilities.
10. This agreement
may be terminated by Notice,
1.
Immediately by Carson,
2.
Immediately by the
Patricia and Paul,
3.
Upon 30 days notice by
KACL.
11. Carson and Patricia and Paul accept that the services
provided by this agreement is provided in lieu of all attendant care funding,
other than specialized service assistance by KACL (e.g. augmentative communication
or other training provided by KACL, or specific funding for training,
specifically approved by KACL) and agree to notify KACL if they should be come
entitled to alternative support services.
12. Any parties shall review this agreement upon 30 days
notice, and failing agreement by the parties within 30 days, may be
unilaterally altered by KACL upon 30 days notice.
Signed by the respective parties or their
duly authorized agents,
Kenora Association for Community Living
------------------------------------------
Carson Consumer
------------------
Paul and Patricia Parent
----------------------
Suzy Server
------------