Representation Agreements Supported Decision Making

WHEN you get right down to it, worrying about the safety and security of ourselves and our family is a priority. How do we gain security and how do we maintain it throughout our lives? These are fundamental questions we all ask ourselves. A good life includes honouring your loved ones’ choices and having them honour yours. This means recognizing individual tastes, preferences, and values. It also means knowing each of us is able to discriminate, to select, and to choose. If you have a loved one living with a disability that severely limits their ability to communicate, you know how determined they can be to express their approval or disapproval.

When children are young, parents or guardians make the important decisions on their behalf. They are responsible for the well being of children. When children reach the often complex and challenging time of adolescence, however, it is necessary to include them in the decisions that will impact their future lives. Sound decision-making practices today will help create a safety net for them as they make the transition from childhood to adulthood. It’s a delicate balancing act faced by families. Keeping the family safe and secure while at the same time respecting their individual choices. This balancing act is tough. Families find it difficult. So do service providers. So do government and its institutions.

Once a child reaches the age of majority parents and guardians are no longer legally able to act on their behalf. If an adult requires assistance to manage their affairs or they are not capable of making their own decisions. This individual will require supported decision making which recognizes and respects their choice-making ability. Most people are capable of making their intentions known. Listening and watching to learn how an individual uniquely communicates allows you to understand how they express themselves, make choices and to show approval or disapproval. All behaviour is a form of communication.

Many people with disabilities are offered few choices in their lives Many people with disabilities are offered few choices in their lives. This can lead to them becoming passive and submissive. But when they are surrounded with people who respect their capacity to make decisions, they are then able to advocate for themselves. This reduces the risk of exploitation, neglect, and abuse. Once an individual’s choice-making ability is recognized they can be supported to make decisions. This may mean, in certain circumstances, speaking or making decisions on their behalf. This type of supported decision-making is formally recognized in British Columbia when an adult creates a Representation Agreement.

There are three broad areas of decision-making that affect you or your loved one’s life: 1. Health/Medical Decisions 2. Financial Decisions 3. Personal Care Decisions, Personal Networks and Representation Agreements are critical to each. They offer further assurance that decisions will be made that protect and enhance the quality of life of your relative.

1. HEALTH/MEDICAL DECISIONS Doctors and hospitals provide emergency medical treatment when it is needed regardless of whether consent can be obtained. Non-emergency health care: Many adults with disabilities enjoy a long-standing relationship with their family doctor. In these situations, the capacity of the person with the disability to give consent is simply not an issue. It has become common practice for the doctor or health care provider to consult with parents or other close family members around health care treatment for the adult with a disability. The medical profession has long recognized relationships of trust and caring. In these situations, supported decision-making is already working. It is best to formalize these relationships by creating or having your loved one create a Representation Agreement. If there is no family involvement or you would prefer someone you trust to help with health care decisions, then it is best to make a Representation Agreement.

2. FINANCIAL DECISIONS There are a number of legal and non-legal options to protect your or the financial assets of your loved one and to ensure good financial decision-making. When your capacity or that of a loved one is in question the best option is the Standard Representation Agreement. When capacity is not in question an Enduring Power of Attorney or Enhanced (Section 9) Representation Agreement works best. These documents also plan for future incapacity. All three are written documents that allow a person to give authority to someone else to make financial decisions on their behalf. When you give this authority to someone else you don’t lose your own authority. They can be revoked at any time by the person who gave the authority. Also note that these legal documents are valid no matter where you live in BC.

Trusts are another option to protect financial assets by ensuring the funds are used to benefit the beneficiary (you or your loved one). Trustees are appointed to manage trust funds on behalf of a beneficiary. In the past, many families considered becoming Committee in order to protect, manage, and invest the financial assets of their adult relative with a disability. Today this is last choice option when there is no network of family, friends and supporters. This procedure has a number of disadvantages: • obtaining Committee involves the courts, is time-consuming and expensive • reporting on the management and expenditure of money is tedious and costly • guidelines to protect and invest the assets may be too conservative for productive money management. The adult can no longer assist with the decision-making process. In the eyes of the law, they are no longer a capable person.

Other approaches used by families to safeguard their family member’s assets include: • establishing a joint bank account • purchasing property in joint title Downside of this arrangement of ownership is that property automatically passes to the surviving joint tenant upon the death of the other joint tenant. As well the assets can be at risk should one of the parties get sued, divorced or become bankrupt

3. PERSONAL CARE DECISIONS This is an area of decision-making that is by far the most elusive because the forces are largely out of our control. Our loved ones will likely be dealing with paid caregivers or service providers and educators for the rest of their lives. These paid staff and professionals make daily decisions which will impact the lives of our relatives. We can’t predict the future of government funding for these critical supports and the repercussions on the quality of programs and services. We are pleased that regulations and policy set standards for service providers. And we acknowledge the value of accreditation and formal evaluation. But we know this doesn’t go far enough. These tend to focus on broad system standards. They don’t address the personal daily circumstances of our loved ones.

Supported decision-making for ourselves or our loved one means: • active participation • views/opinions are sought and considered • ensure individuals are surrounded by caring, knowledgeable, and trustworthy people • individuals needs are the primary consideration and not the needs of staff or the service system • focus put on an individual’s abilities and wishes and all forms of communication are acknowledged • all their choices and options are considered • an individual’s tastes, preferences, motives, and ability to discriminate are taken seriously • an individual’s risks, failures, and mistakes are recognized as learning opportunities.

Representation agreements: supported decision-making Representation agreements enable adults to get decision-making support without having to go to court or be declared incapable. A representation agreement belongs to the person who creates it, whether that is you or your loved one. It is a legal document signed by the person whose wishes are represented. It gives legal authority to representatives, chosen by you or your loved one, allowing them to help manage your or your loved one’s affairs.

There are two types of representation agreements: standard (section 7) and enhanced (section 9). the standard agreement covers routine financial, health, and personal care authorities and is more than adequate to provide support for most decisions. The Representation Agreement Act recognizes all forms of communication, verbal and non-verbal, and assumes you or your loved one are able to make a representation agreement unless someone is able to prove you or they can’t. This means there are no specific requirements regarding capacity that stand in the way of creating a standard representation agreement.

It is a good idea to be transparent and thorough when you assist your loved one in creating a representation agreement. Should it ever be challenged, two important factors in determining capability include: • the existence of a trusting relationship between the adult and their representative(s) • evidence the adult demonstrates choices and preferences and can express feelings of approval and disapproval.

Standard representation agreements cover: • personal care: maintaining diet, exercise, living arrangements; respecting spiritual, religious or cultural traditions; arranging home support, caring for pets • routine management of financial affairs: banking, applying for and dealing with benefits, insuring or selling motor vehicles, managing existing loans and insurance, dealing with income tax, making or disposing of investments, and so on • major health care: undergoing surgery, general anesthetic, kidney dialysis, chemotherapy • minor health care: having medical examinations, immunizations, medications.

The Standard (Section 7) Representation Agreement does not require a lawyer or a notary, although you can retain a lawyer if you wish. Otherwise, you can prepare the Agreement with your supporters (or with your loved one). If you reside within your first nation community your social development or health department will be able to assist you with this. The Nidus Personal Planning Resource Centre provides a self-help kit and will assist you through the process of developing a representation agreement http://www.nidus.ca

THE BENEFITS OF REPRESENTATION AGREEMENTS A representation agreement can be adapted to suit your exact circumstances. Representation agreements are accessible to all adults. They have been developed for individuals regardless of the nature and extent of their disability and vulnerability or how they communicate. Representation agreements: •look at you or your loved one as an individual rather than a disability •strengthens your or your loved one voice and ensures that your or your loved one views, values, and beliefs are front and center •provide a test of capability that reflects your or your loved one ability. In comparison, the test of capability to sign personal planning documents like an Enduring Power of Attorney means everyone has to understand their affairs as well as what happens when they give someone authority over their affairs.

acknowledge that there are other ways of “knowing” things acknowledge that there are other ways of “knowing” things. For example, social capability is the ability to relate to others and convey trust. Representation agreements acknowledge this. Representation agreements also consider trusting relationships when determining capability. They: give status to friends, family members, and members of personal networks. Many of us don’t realize that when our sons and daughters turn 19, we are no longer their legal guardians. create a vehicle for formalizing existing relationships and forming a network of support create the means for a working partnership among caregivers, professionals, government workers, friends, family members, and ourselves or our loved one provide us with peace of mind.

Basic facts about Representation Agreements: anyone over the age of 19 years can make a Representation Agreement even if they cannot currently manage their affairs or sign a traditional contract Representation Agreements authorize people to assist your relative in managing their affairs without your relative losing their own decision-making rights everyone is assumed to be capable of signing a Representation Agreement all forms of communication are accepted, verbal and non-verbal to prevent abuse and exploitation of an adult who creates a Representation Agreement, a number of safeguards are available: all agreements must be witnessed a monitor must be appointed for routine management of financial affairs or at least two representatives must act jointly for finances representatives must sign a certificate to certify they agree to follow their duties as set out in the Representation Agreement Act the actions of representatives may be challenged, and the Office of Public Guardian and Trustee has the authority to investigate complaints.

Choosing a guardian for children under the age of 19 It is difficult to discuss who should take care of our children under the age of 19 should we die unexpectedly. This decision is magnified when your loved one lives with a disability. Monitoring is a natural extension of our parenting skills. While we are alive, we can engage with service providers on behalf of our children. We know how important it is to maintain a relationship with them. We have a good idea of how much work this requires and how much time it takes. If there is a concern, we can do something about it. But how and who do we choose to continue to provide this for our loved one when we are gone. Unfortunately, it does happen leaving the surviving children, remaining family, and friends in legal limbo. The courts become involved and a judge makes a custody order. You cannot assume grandparents, godparents or other choices you think are obvious will automatically be given responsibility. More than 40 per cent of Canadian parents have not legally appointed a guardian for their children.

NOTE Contrary to popular belief, you cannot appoint a guardian for your adult children in your Will. You must add a guardianship clause to your Will. One of the toughest decisions faced by parents is determining who to appoint as legal guardian of our minor children. Here are some suggestions to assist you in choosing a guardian:

list your parental values, your aspirations for your children, as well as any religious, financial or cultural concerns; choose the person who comes closest to your parenting style and who would guide your children the way you intend to guide them. A child’s aunt or uncle is a common trusted choice, followed by close family friends. Trust in that person’s judgment is paramount; try to select someone close to your age rather than someone of your parent’s generation. Your parents may be excellent grandparents but they may not be able to manage another set of children, especially through the teenage years; becoming a guardian adds additional financial as well as emotional responsibilities. In recognition of this, some parents take out a life insurance policy naming the guardian as beneficiary; parents of other children with disabilities are a good source of advice. Because of their common bond, parents often choose each other as guardians.