Resources for Individuals with a Developmental Disability who are Aging
Health Related Resources
Surrey Place – Ontario Ministry of Health Developmental Disabilities Primary Care Program: People with intellectual and developmental disabilities (IDD) have different and often more complex health needs than other patients do. Thes guidelines on the primary care of adults with IDD aim to help family physicians and other providers of primary care to make informed decisions with their patients and the patients’ caregivers. The focus is on health issues that are specific to adults with IDD. These tend to be overlooked because they can vary from what is encountered in other patients.
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Surrey Place Physical Health Guidelines
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Surrey Place Mental Health Guidelines
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National Task Group on Intellectual Disabilities and Dementia Practices (NTG): The NTG is a not-for-profit organization charged with ensuring that the interests of adults with intellectual and developmental disabilities who are affected by Alzheimer’s disease and other causes of dementia - as well as their families and friends – are taken into account. The NTG WEBSITE has a wealth of resources and information including a specially designed Dementia Screening Tool. Although based in the USA, NGT has Canada specific education and training.
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Advance Care Planning Resources:
Advance care planning is personal planning for your health care. It helps prepare others if you are unable to speak for yourself. Advance care planning means that family, friends and care providers know what your values are, what a good day looks like for you, what brings you joy and what brings your life meaning. Knowing your personal values, and their importance, will inform decisions related to your health care. Advanced Care Planning may also involve naming a substitute decision maker, a trusted friend or family member, who can make decisions for you if you are not able to. Even if you have a representation agreement, you should also have an Advanced Care Plan. This FRASER HEALTH WEBPAGE explains Advanced Care Planning and has links to resources. Fraser Health as also created an excellent Advanced Care Planning Plain Language Workbook.
How Best To Support Adults With Intellectual And Developmental Disabilities (IDD) Who Are Frail: Physical frailty is one of the main reasons that people are unable to age in place. People with IDD may become frail sooner than the general population and their lifelong vulnerabilities can make assessing frailty more difficult. Multidimensional Assessment of Providers and Systems (MAPS) is coordinating and conducting research in this area. They have also created some educational materials. Find more information about their work at https://www.mapsresearch.ca/projects/aging/
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CLBC Resources for Individuals who are Aging
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CLBC Strategy on Ageing – May 2013: Created after extensive community consultation, this document sets out how CLBC plans to respond to the challenge and opportunity of supporting aging adults with IDD. The Strategy looks at the 8 domains in the Quality of Life Framework. For each domain it examines the challenges and the difference CLBC wants to make. https://www.communitylivingbc.ca/wp-content/uploads/2018/02/CLBC-Strategy-on-Aging.pdf
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Looking Forward to the Future - 2017: This book tells the stories of 14 individuals who are supported by CLBC and are aging. Each story celebrates the individual and their unique achievements. The stories also personalize the issues that individuals with IDD face as they age. For example Bruce's story discusses how his network gathered to help him grieve his mother's death.
https://www.communitylivingbc.ca/wp-content/uploads/Looking-Forward-To-The-Future.pdf
Aging with a Developmental Disability - 2017: This is a guide to be used for those doing planning with individuals who are aging. I covers the 8 domains in the Quality of Life Framework. For each domain the guide has information on the changes that come with aging as well as resources and information about how to plan for those changes.
https://www.communitylivingbc.ca/wp-content/uploads/Planning-with-Aging-Adults.pdf
Report from the Roundtable on Aging: Between 2020 and 2022 CLBC gathered data on the individuals it serves to forecast the number of older individuals CLBC will serve in the future. As well CLBC did "roundtable" consultations with stake holders including self advocates. This report includes the gathered data and also recommendations for CLBC, including how CLBC will work with partners such as service providers and families.
https://www.communitylivingbc.ca/wp-content/uploads/CLBC_Report_Aging_Forum_April_2022.pdf
Tool for CLBC Staff: This is a guide for CLBC staff who are working with individuals who are aging. CLBC has some requirements for staff which are outlined such as "check ins" when individuals are aged 55 and 63. The guide has suggestions for planning conversations. Particularly useful are the resources for financial planning and fall prevention.
https://www.communitylivingbc.ca/wp-content/uploads/Planning-with-Aging-Adults.pdf
Aware Share Care: Aware Share Care is a website developed by CLBC to provide information, resources, and tools to support health care for adults aging with developmental disabilities. While it is worth visiting, the site does not have the comprehensive health information that is available on the Surrey Place website. https://awaresharecare.ca/
Other Resources
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BC CEO Network Late Life Planning Guide: This guide is available to service providers who should be able to share relevant content with families and individuals, but has not been released to the public. It has detailed information on topics such as palliative care, hospice care and planning funerals. The BC CEO Network's website is https://bcceonetwork.ca/
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Nidus: Nidus provides information to British Columbians about personal planning, specializing in Representation Agreements and also operates a centralized Registry for personal planning documents. They have information about Representation Agreements that is specific to individuals with IDD. This is important for individuals who are aging as they may need to create new representation agreements. This often happens when aging parents are no longer appropriate representatives. The Nidus Website is https://www.nidus.ca/ The Nidus Youtube Channel has videos specifically about Representation Agreements for people with IDD.