Inside the Guide

For caregivers, families and service providers
The guide that expedites the search for essential resources for persons with developmental disabilities.

Table of Contents

Overview

Is This Guide for You?

If you are a person with a developmental disability (DD), a caregiver or family member, a service provider – or perhaps a researcher – this Guide is for you.

Remember that you do not have to read every section to benefit from this Guide. The table of contents will help with the directory of information.

The focus of the Guide is to increase awareness of the aging process for persons with a DD (and their caregivers), promote healthy lifestyles and early planning to aid in successful aging and to include related resources.

Welcome to

Aging with a Developmental Disability: Planning for Success!

Before you delve into the new Guide, we would like to provide some background about its development.

This “new” Guide is an updated version of Aging with a Developmental Disability – Transition Guide for Caregivers, which was published in 2005, by the Ontario Partnership on Aging and Developmental Disabilities (OPADD) Transition Task Group, funded by the Ontario Trillium Foundation.

The original 2005 Transition Guide was developed for the use of families and caregivers, and drew on information collected from literature reviews, applied research on transition planning, service provider surveys, planning groups, interviews with caregivers, and the collective experience of the OPADD Transition Task Force. There was good feedback about the Guide from the developmental services, Seniors and Long-Term Care sectors. These sectors observed that the Guide covered more than just transition and requested that it be updated and include additional information.

A number of years ago the Toronto Partnership on Aging and Developmental Disabilities, a committee of OPADD, began an update of the Guide, to further cross-sector planning and provide updates.

Sandy Stemp, Chief Administrative Officer of Reena, and Don Walker, Executive Director of Mary Centre, recognized that dedicated resources were needed to develop the update.

In 2017, Reena and Mary Centre subsequently partnered and received a grant under the former Ministry of Community and Social Services (MCSS) Employment and Modernization Fund to revise and update the 2005 Transition Guide. The goal was to create a hard copy and web-based cross-sectoral (Developmental and Senior Health Services) provincial resource, to:

  • improve timely access for persons with developmental disabilities to health and senior services across the province
  • improve service integration across the sectors, and
  • increase awareness with caregivers and service providers of the importance of early transitional planning.

Consultants and a project manager were brought on board to assist with the project.

A preliminary review of the 2005 Guide determined that many elements were still relevant and should be incorporated in the updated version.

In February 2018, an Advisory Committee was established composed of members who had the knowledge, interest, and experience related to developmental disabilities (DD) and/or senior health, were involved in a range and diversity of services across the sectors, and located in various geographic regions throughout the province. Membership included representation from the Developmental Services Sector, the Ministries of Health and Long-Term Care, the Ministry of Children, Community and Social Services, OPADD, Home and Community Care, Caregivers, and the Kenora Chiefs Advisory.

Stakeholder meetings with 184 participants were held throughout the province to build on knowledge, and to share tools/resources and best practices to inform the development of the Guide. Caregiver and service provider surveys were developed and analyzed to aid in the development. Recent Ontario research on a frailty index and analysis of care plans for frail and pre-frail adults with Intellectual Developmental Disabilities (IDD) were incorporated into the Guide.

During the consultation period, the Guidelines For Supporting Adults With a Developmental Disability When Applying To, Moving Into and Residing In a Long-Term Care Home (2017) were published. The release of these guidelines from the former Ministry of Health and Long-Term Care, and the former MCSS provided an opportunity to incorporate key references into this new Guide, and to consult on ways to support policy directives and guidelines with practical, operational suggestions and tools.

In the development process, it was felt that the target audience of the Guide needed to be expanded to include persons with Developmental Disabilities (DD), as well as their caregivers, families, and service providers.

The Guide, therefore needed to be in plain language, whether in Word, PDF or web version. Feedback from self-advocates, caregivers, and some service providers indicated a strong preference for the hard-copy format for a variety of reasons, including difficulty accessing the Internet in more remote locations, using technology, costs, etc.

Although the focus on the Guide is operational and practical, we made an exception, which you will find in the section on Transition Planning – The Current Context.

Nancy Jokinen, MSW, PhD, and Adjunct Professor, UNBC School of Social Work, was asked to provide an “academic” overview of the current context of transition, the importance of collaboration, and the need to both plan and execute.

Finally, we gratefully acknowledge the leadership of Sandy Stemp and Don Walker in steering this initiative, and look forward to any feedback you care to provide.