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. Once, 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 had a strong bias and have indicated them to the Association. A challenge of such a position was s8uccesfully brought before the BC Human Rights commission.

The Association has taken some tentative positions and have identified some important issues that should be identified in each particular case.

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.

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?

A different level of funding should be paid to family members than to strangers reflecting only the extra ordinary expenses of supporting a relative? What are the extraordinary expenses?

Executive Director shall have discretion to approve individualized funding for individuals serving family members. The Executive Director shall inform the Board of such approvals at the next Board meeting.

Are generic services necessarily superior to services provided by specialized agencies such as KACL?

For financial reasons for all future service, staff 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.

Individual Funding

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.

Form of Funding

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.

Basis for Amount of funding

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 should 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 $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.

The issue of Entitlement vs. Resource Base Regime: Basic or Disability Related Needs

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