Ask an Expert: Joanne Taylor Answers Your Questions on Personal Planning

Joanne Taylor is the Executive Director of the Nidus Personal Planning Resource Centre, a non-government, charitable organization that assists the public with personal planning. She is also the Registrar of the online Personal Planning Registry, a centralized repository for personal planning documents. Joanne credits much of her practical expertise on personal planning to her father, John Taylor, who had Parkinson’s disease (PD).

What is personal planning?

Personal planning refers to the formal, legal arrangements you make in case you need assistance during your lifetime due to an illness, injury or disability.

Personal planning involves four aspects of your life: health, personal, legal and financial. It addresses issues that arise when you are alive, whereas estate planning deals with matters that arise after your death, such as settling your estate.

You may have heard about ‘advance care planning.’ This term is typically used by the health care system, and applies to the health care aspect of personal planning.

When should an individual begin to plan?

It is never too early to plan. Shortly after his PD diagnosis in 2004, my father made a Representation Agreement Section 9 (RA9) through Nidus. A couple of years later, he revoked (cancelled) earlier versions of both his will and his Enduring Power of Attorney and made new documents to better reflect his wishes and values. His actions reminded me to update my own personal planning and estate planning documents.

What are the benefits of planning in advance?

I can personally attest that personal planning can save time and help ease the burden of already challenging situations. For example, since I was named in my father’s RA9 (a representation agreement), I was able to help him communicate with UBC Movement Disorder Parkinson’s Clinic staff. This became particularly important as his speaking voice became quieter and more difficult to understand.

Again, personal planning does not only apply to healthcare. Since I was named in my father’s Enduring Power of Attorney (EPA), I was able to use this document in 2012 to take care of my father’s finances at the bank, as well as redirect his mail when he moved.

I have experienced how personal planning can improve communication within a family and quality of life for the individual. On a professional level, through Nidus, I see how personal planning has benefits for people in various types of situations, whether they are managing Parkinson’s or other conditions.

What types of planning documents are available in British Columbia?

There are two paths for personal planning in BC. The paths relate to the mental capability of the adult at the time they are making their documents. There are different documents available, depending on the path.

Most of us are on the future path. This means we understand the nature of what the planning documents cover and the effect of authorizing someone to help us. Like my father and I, you want to make your legal documents while you are considered capable. Nidus has information and some forms on the website – go to www.nidus.ca and choose the I’m Planning on the Future Path option. Adults on the future path will make two key legal documents to cover all life areas. They will make a Representation Agreement Section 9 (RA9) to cover health and personal care matters. An Enduring Power of Attorney (EPA) is the most comprehensive document for financial and legal affairs. Some adults on the future path may make a Representation Agreement Section 7 for only routine financial and legal affairs (RA7 F+L) instead of an EPA, but it does not cover as much as the EPA. Please note that an RA9 does not cover any finances and an EPA does not cover health or personal care decision making.

In BC, we have Advance Directive (AD) legislation that gives legal force to health care instructions. You must be mentally capable to make an AD. An AD has limited use on its own as it is impossible to predict the future – particularly with chronic conditions such as PD. You must also be very careful about what you put in writing because you do not know how it will be interpreted. If you make an AD or write out any wishes in a living will, give it to your representative to apply in the circumstances you intended.

There are other options on the future path such as consent to organ or body donation. You can find information on the Nidus website at www.nidus.ca under Information and End-of-Life Planning.

Some adults put off their planning for too long such that they are in a position where they need assistance in their life, but their mental capability is now in question. In this case, they may not be capable to make documents on the future path. We say these adults are on the need help today path.

Adults on the need help today path may make a Representation Agreement Section 7 (RA7) as it has a different view of mental capability than the RA9 or EPA. An RA7 is a legal document. It covers minor and major health care, personal care, legal affairs and routine finances. Only BC has the RA7 for adults whose mental capability is in question. In other provinces and countries, these adults are subject to guardianship and lose their civil rights – effectively becoming a ‘non-person’. Nidus has more information and forms on the website – go to www.nidus.ca and click on the Caring for an Older Adult Who Needs Help Now heading.

What steps can I take in personal planning?

1. Determine which personal planning path applies to you – the future path or the need help today path. It is important to prepare the document(s) that fit/fits your path.
2. Identify your support system. Do you have friends or family members that you trust to respect your wishes?
3. Discuss roles and duties related to your planning documents with your support system.
4. Create the relevant legal documents.
5. You may choose to register your completed documents with the Personal Planning Registry. This is a secure online service for storing your information and decisions online, while ensuring that they will become available to those who need access down the road.
6. Distribute your documents to the relevant individuals or groups – and ensure that both you and others keep them safe!
7. Review your documents and discuss your current wishes with those you named at least once a year.

Do you have any personal planning tips that may be particularly useful for people with Parkinson’s?

I highly recommend using local resources available to you. My father and I are grateful to Parkinson Society British Columbia for helping us learn about the disease, resources and coping strategies. He also attended the Coquitlam Support Group. Personally, I am very excited by the Society’s education on communication and swallowing as those issues were very confusing to our family at the time. Through discussions with my father, I learned more about what was important to him, which helped me in my role as his representative.

A family doctor and neurologist are also very important sources of information about Parkinson’s and its expected progression, including its impact on reasoning, memory and mood. I highly recommend having in-depth conversations with your health care team about the benefits, risks and interactions of Parkinson’s medications with any other types of medications you may be taking.

My father and I gave a copy of the RA9 to his family doctor and neurologist. We would discuss any issues before an appointment, and I would make notes of symptoms to report and questions to ask. Each time, I made a copy of the notes for my father and for me or my brother. Whoever went with my father to his appointments would then be prepared to bring up issues and write down answers and advice. After the appointment we reviewed the notes and made sure to keep others in the loop. This may be a good approach for others to adopt, if it suits their needs.

Quick tips:

• Do not put wording in your Representation Agreement or Enduring Power of Attorney to say that it will come into effect later. The documents may be needed at various times. They need to be in effect when signed.
• Be careful – often, although it may be helpful to include specific instructions or wishes for your family, this information is not helpful to include in the legal document itself. In this case, you can write any additional information on a separate page, which can be updated as your condition progresses.
• Have ongoing conversations – Nidus provides the Values and Beliefs Discussion Guide as a resource. Go to www.nidus.ca – click Get Help, then Discussion Tools.

What is Nidus? Who is behind it?

Nidus (Latin for nest: a symbol of support and safety) was established in 1995 by citizens and community groups to be a resource on Representation Agreements and personal planning. It is a leader and trusted resource on personal planning in BC and internationally. We collaborate with health care and legal professionals, and with government, but we are independent. As a non-profit charity our mandate is to serve the public.

Nidus grew out of a grass-roots legal reform to create health care consent legislation, as well as the Representation Agreement Act (RA Act) to provide new planning tools. The RA Act gives British Columbians a legal way to plan for health and personal care matters. It also offers a legal alternative to adult guardianship.

The idea of a centralized registry for personal planning documents came out of the law reform. It is something the public wanted. The BC government decided not to set up a registry service, but they encourage the public to use the Nidus Personal Planning Registry.

You will find lots of information, Representation Agreement forms and access to the Registry at the Nidus website www.nidus.ca. Nidus provides personal help by appointment and you can book online at the website – select book now in the right sidebar.

This content was published in the Fall 2016 edition of our quarterly magazine, Viewpoints. The content was accurate as of this publication date.