Guiding Principles

The following principles were developed in consultation sessions and in collaboration with the Advisory Committee. The principles were designed to serve as a guideline for developing the new Guide, with its greater emphasis on early planning and collaborative partnerships. These principles are also a helpful point of reference when thinking through issues that arise with aging, with person-centred decision making, and when developing care and transition plans for people with developmental disabilities (DD).

In addition to Principle #6 – keeping language and formatting as simple as possible – we have included sections directly related to these principles throughout the Guide. As well, there is a companion piece on partnership frameworks which links to Principles #4 and #5, which is included in a later section on Service Provider Considerations.

1. Champion Early Planning

• Proactive planning and taking a preventative approach is key to avoiding a crisis as people with DD age.
• Planning is a reflection of timelines and needs in an individual’s life, so the process should be thoughtful, considering integrated and person-centred care
• Transition should be gradual to ensure quality of life and best outcomes
• Ensure that families prepare backup plans from youth to seniors, identifying risk factors
• Hold “value-based conversations” regarding a person’s history, values, and preference

2. Advocate for Diversity and Inclusion

• Diversity and inclusion are based on a foundation of respect for all people. We all benefit when we deliver services that meet the diverse social, cultural, and linguistic needs of patients/clients. Inclusion of families is also an important part of a holistic approach service. Inclusion also means taking into account geographic challenges and reducing obstacles to barrier-free access whenever possible.
• Inclusion also means integrating those with DD into the senior population as a whole. Providers must work to support and educate the general aging population, as well as staff, family and residents in LTC settings regarding DD, to overcome fears and stigmas, e.g. , the misperception that all people aging with developmental disabilities have responsive behaviours.

3. Apply a Person- and Family-Centred Approach

• One’s first concern should be to “do no harm” to the person. A key ethical consideration when making planning decisions, is that the person’s well-being is the primary consideration
• Demonstrate respect for the person’s rights and decision-making, and for the concept of individual choice
• Build transition plans that are unique to the person’s current wishes and lifestyle, with the goal of avoiding institutionalization as long as the person is safe
• Keep the person close to their community to retain their supports, relationships, and circle of care.
• Consider the circle of care that matters most to the person, and appreciate that there may be a difference and importance between the person who knows the person e.g. client best, and/or who provides support to the person, vs. the formal decision maker.
• Address quality of life in decision-making– ensuring the person is matched properly to where they are going.
• Ensure that critical information and behaviour plans are carried forward when a person with DD moves into a LTC setting, in order to preserve stability, consistency and supports.

4. Commit to Integrated Care (Supports/Services/Processes)

• Strive towards the use of an integrated and coordinated care plan – with joint access to common tools to facilitate and guide the process of incorporating records from different sectors where appropriate, and in the identification of legal and practical operational considerations
• Clarify roles and processes so that services are not fragmented, and minimize duplication
• Bridge and facilitate the transition process
• Identify paths and processes along the “continuum of care” in health and social services e.g., how to make an initial referral, who to consult if a person is getting close, if you are making an inappropriate referral, questions to ask
• Be flexible and creative.

5. Collaborate and Value Partner Relationships

• It is important to recognize families, persons/clients/patients, direct caregivers, and staff as partners – as well as Ministry and organizational partnerships.
• Collaboration towards a common vision and care planning will require individual partners from all sectors to bring their available resources “to the table.”
• Problem solve together with other community resources to maximize programs and relationships outside of the home.
• Foster ongoing and early communication to help manage change in the transition planning process
• Commit to cross-sectoral training for staff, to enhance capacity and competency.

6. “Keep It Simple”

• Ensure that the guide is easy to use for families and caregivers, as well as providers.
• Use plain language, visual aids where possible, and avoid “jargon”.
• Include a section for acronyms.
• Include practical tools, checklists and examples of best practices.

Summary

Now that you have some background about the Guide, and the principles that have informed its development, the next sections will briefly outline:

• The Purpose of the Guide
• Key Contents in the Guide, and
• How to Use the Guide