There are many transitions in life. This Guide focuses on the transition to older adulthood for people with developmental disabilities. It is important to keep in mind that transition to older adulthood is not merely about accessing a variety of programs available to senior citizens. It is above all a planned and conscious evolution to embrace life as it presents itself during the aging process.
From the Ontario Partnership on Aging and Developmental Disabilities
The Advocacy Centre for the Elderly (ACE) is a specialty community legal clinic that was established to provide a range of legal services to low-income seniors in Ontario. The legal services include advice and representation to individual and group clients, public legal education, law reform and community development activities. ACE has been operating since 1984.
Angela Gonzales and Lindsay Wingham-Smith discuss ways to improve collaborative care planning to support people with issues related to aging with a Developmental disability Click here
A BRAND NEW WORLD: ONTARIO’S NEW LONG-TERM CARE HOMES ACT
The Long-Term Care Homes Act, 2007 (LTCHA or the Act) is coming into force in Ontario on July 1, 2010. This legislation replaces the three current pieces of legislation which presently govern long-term care homes: the Charitable Homes Act, the Homes for the Aged and Rest Homes Act and the Nursing Homes Act. Click here
DISCHARGE FROM HOSPITAL TO LONG-TERM CARE: ISSUES IN ONTARIO
Hospitals in Ontario are overcrowded. Thousands of people are on waiting lists for long-term care homes. As a result, people requiring long-term care (LTC) are confronted with a variety of “policies” and “programs” developed to “deal” with these issues despite the legislation governing placement. Click here
TIPS AND TRAPS WHEN CONSIDERING APPLYING FOR LONG-TERM CARE
ACE often provides advice regarding issues related to placement or waiting for placement into long-term care. The following are tips and traps that we believe everyone should be aware of when considering long-term care placement or alternatives. Click here
Long-Term Care: Reframing the Conversation
HOME FIRST” – IS IT RIGHT FOR YOU?
Recent articles have appeared in various publications touting “Home First” programs as the solution to the problem that Alternate Level of Care (ALC) patients face in many hospitals. ALC patients have completed the acute phase of their treatment and are awaiting placement into a long-term care home, but because of long waiting lists remain in hospital. While “Home First” may be beneficial for many seniors, this is not universal. Click here
Brendon D. Pooran, PooranLaw Professional Corporation
Advice in the areas of wills, trusts and estate planning for individuals with disabilities and their families.
Recorded on Monday, October 20, 2014 at the Victoria Village Hub 1527 Victoria Park Ave., 2nd Floor 7:00 – 9:00 pm
Additional Resources
The Advocacy Centre for the Elderly (ACE)
The Advocacy Centre for the Elderly (ACE) is a specialty community legal clinic that was established to provide a range of legal services to low-income seniors in Ontario. The legal services include advice and representation to individual and group clients, public legal education, law reform and community development activities. ACE has been operating since 1984.
A BRAND NEW WORLD: ONTARIO’S NEW LONG-TERM CARE HOMES ACT
The Long-Term Care Homes Act, 2007 (LTCHA or the Act) is coming into force in Ontario on July 1, 2010. This legislation replaces the three current pieces of legislation which presently govern long-term care homes: the Charitable Homes Act, the Homes for the Aged and Rest Homes Act and the Nursing Homes Act. Click here
DISCHARGE FROM HOSPITAL TO LONG-TERM CARE: ISSUES IN ONTARIO
Hospitals in Ontario are overcrowded. Thousands of people are on waiting lists for long-term care homes. As a result, people requiring long-term care (LTC) are confronted with a variety of “policies” and “programs” developed to “deal” with these issues despite the legislation governing placement. Click here
TIPS AND TRAPS WHEN CONSIDERING APPLYING FOR LONG-TERM CARE
ACE often provides advice regarding issues related to placement or waiting for placement into long-term care. The following are tips and traps that we believe everyone should be aware of when considering long-term care placement or alternatives. Click here
HOME FIRST” – IS IT RIGHT FOR YOU?
Recent articles have appeared in various publications touting “Home First” programs as the solution to the problem that Alternate Level of Care (ALC) patients face in many hospitals. ALC patients have completed the acute phase of their treatment and are awaiting placement into a long-term care home, but because of long waiting lists remain in hospital. While “Home First” may be beneficial for many seniors, this is not universal. Click here
Tip sheets and workshop describing the likely changes to their body systems and functioning abilities as someone ages and strategies to help support a person with an intellectual disability exhibiting these changes.
Normal Aging – What we Know and How it Impacts Individuals with a Developmental Disability
Presenter: Brenda Elias, Faculty, Non Profit and Voluntary Sector Management, Ryerson University and Social Foundations of Gerontology, Family & Community Social Services, University of Guelph-Humber
What is Ontario’s Aging in Place Policy?
Psychosocial aspects of aging
Critical importance of social networks for maintaining health and wellbeing as we age
Some of the common concerns around nutrition and eating as they relate to aging and some strategies that can be used to help maintain the nutritional level of those we support.
The Role of the Care Provider in the Prevention of Foot Complications
The focus of this article is about maintaining foot health and the caregiver’s role in preventing foot complications. Read more
Palliative Care
Palliative care can be separated into three stages. These stages enable the caregiver to plan and work with expected outcomes. In each of these stages symptom management is required, the following pages cover the most common symptoms. Material written by Aakilah Ade, Certified Hospice and Palliative Care Consultant.
Good health is important to all of us. When you are healthy, you can go out with friends and family, do sports, go to school, or work better. People with developmental disabilities are more likely to have illnesses like diabetes, asthma or heart disease than people without a disability.
This video explains how healthy people with developmental disabilities in Ontario are, and what kind of healthcare they get. Not everyone is as healthy as they could be, and not everyone is getting the healthcare that they need.
Caption: A Talk About Health, by Health Care Access Research and Developmental Disabilities (H-CARDD), CAMH, 2015 [20 minutes]
Going to the Doctor
The more the doctor knows about you, the more they can help make the visit better for you. Use the “About My Health” form to write down information about you, your medication, and your health before you go see the doctor. You can fill it out yourself or ask someone to help you. Give this form to your doctor or nurse at the start of any healthcare visit. Get the “About My Health” form at the Surrey Place website.
Sometimes it is difficult to remember everything that the doctor said. Ask your doctor or someone who comes with you to the doctor’s office to fill out the “About My Healthcare Visit” form. Write what you need to do after the healthcare visit. Get the “About My Healthcare Visit” form at the Surrey Place website.
Even if you don’t feel sick, it is still important to see your doctor once every year for a check-up. In this video Andrew explains what happens at a healthcare visit and how you can prepare.
Caption: Going to the Doctor, by Health Care Assess Research and Developmental Disabilities (H-CARDD), CAMH, 2016 [5:30 minutes]
Getting a blood test
Sometimes the doctor needs to know more about your health and will ask you to get a blood test at a health lab. This video shows you what exactly happens when going for a blood test.
What happens when you go to get bloodwork done, by Surrey Place, 2019, [3:00 minutes
Getting a Blood Test, by Health Care Access Research and Developmental Disabilities (H-CARDD), CAMH, 2016 [4:30 minutes]
Going to the hospital
When you go to the hospital or emergency room, people will ask you many questions. Bring the “About My Health” form to have all your information ready for the doctors and nurses.
This video explains what happens when you go to the emergency department.
Caption: What to expert wen you go to the ER, by CAMH, 2014 [3:10 minutes]
Find more tips on how to prepare for a visit to the emergency department in this checklist.
Prepare a crisis plan with your family or staff for future emergencies.
Health problems you should check for regularly
Sometimes you don’t notice when you are sick. At a check-up you can ask for tests to see if you are healthy. Some important health problems to check for are: cancer, diabetes, pap test. Here are some otherthings to know about health.
When you are just not feeling happy
Mental health is about how you feel and what you think. Sometimes you do not feel sick in your body, but you just don’t feel happy or enjoy doing activities anymore, or you worry a lot. Listen to a conversation with Special Olympics athletes about what you can do when you don’t feel happy and how you can help others who feel that way. There are 4 videos in this series.
We all like to have someone in our corner in difficult situations. Staff can make a big difference in supporting people with developmental disabilities in their health. Learn how to prepare together for a visit to the doctor.
Caption: Everybody Wins: Preparing for a Healthcare Visit. By, Health Care Access Research and Developmental Disabilities and Vita Community Living, 2019 [7:06 minutes]
During the healthcare visit support workers can help with communication. In this video you see how to use the About My Health and My Healthcare Visit forms to share important information with the doctor. Julie also shares how a few accommodations can really be a game changer for her healthcare visit.
Caption: The Game Changer: The Doctor Visit, by Health Care Access Research and Developmental Disabilities and Vita Community Living, 2019 [7:55 minutes]
Support staff can also help track common health issues like bowel movements, sleep and weight using monitoring charts. Download health monitoring charts.
For a complete healthcare toolkit for direct support professionals, visit the website Nuts and Bolts of Health Care. The toolkit includes, videos, tools and newsletters with practical tips on primary and emergency care.
More information
Community Networks of Specialized Care (CNSC): this network links specialized services across Ontario, improves services delivery and builds capacity in the community. The team includes Health Care Facilitators across Ontario. This website has information for service providers and direct support professionals Read more.
Developmental Disabilities Primary Care Program (DDPCP): this program develops guidelines, resources and tools for health care providers and caregivers to improve the health of people with developmental disabilities. Read more.
Health Care Access Research and Developmental Disabilities (H-CARDD): this is a research program investigating the health status and health service use of adults with intellectual and developmental disabilities in Ontario. On this website you will find research information and many clinical tools and health care resources for patients, caregivers, and health care providers. Read more.
Palliative Pain and Symptom Management
Presenter: Tracey Human, RN, Palliative Pain Symptom Management Consultation Service for Toronto
Considerations for intellectual and physical disability communities of practice – palliative care, hospice, collaborative care planning.
Comfort Care is an essential part of medical care at the end of life. It is care that helps or soothes a person who is dying. The goal is to prevent or relieve suffering as much as possible while respecting the dying person’s wishes. Seven Oaks Long Term Care Home has developed a Comfort Care Basket program. The Comfort Care Basket is for the resident who is currently receiving comfort care support, their family and friends in hope that it will make their time together as comfortable as possible. This guide details how to create a Comfort Care Basket, ideas about what you can do to provide comfort care and specific protocols for various cultural and religious beliefs. Read more »
As Death Approaches: A Guide to Symptoms and Comfort
Death comes differently for every person, and your loved ones death will be unique. However, there are changes that are commonly part of this final phase of life. You may see these in your loved one. This handout explains some of these changes and gives ideas about what you can do to provide care and comfort. This information may help you anticipate the changes you may see in your loved one and to go forward with more peace and confidence. Read more »
Palliative and End of Life Care Glossary
A glossary of palliative and end of life terms and definitions Read more »
Different cultural beliefs at time of death
Living in a society represented by many cultures and religious beliefs means that memorable events can be celebrated differently. In this section we look at the different religious beliefs surrounding death & dying and what funeral or burial rituals may be undertaken. Read more »
Health Booklets
The My Health Booklets are a series of health education booklets produced by Surrey Place Centre and funded by the Ontario Government, Ministry of Children, Community and Social Services. The purpose for the series is to offer guidance to people with developmental disabilities in a clear and simple manner. The series consists of eight booklets now available online, with subjects ranging from general health issues to more specific health topics.
Using emergency services: What clients with developmental disabilities should expect
Jillian Carlyle of the CAMH Dual Diagnosis Service talks about what clients and families should expect and prepare for when going the emergency department. Play video
In Case of Emergency, Please Read: Ideas and Strategies for Supporting People with Developmental Disabilities Receiving Emergency Care
This article offers some practical tips about how to make emergency visits as good as they can be, and also outlines some steps we can all take to reduce the likelihood of having to go to the hospital in the first place. read more
Strategies for caring for people with developmental disabilities in medical settings
Useful strategies to improve communications and gather more comprehensive information on people with developmental disabilities who come to medical settings requiring medical support.
Toronto Central Health Integration Network (LHIN) Overview: Who We Are
After the presentation Kim gives a description about her role as a care coordinator for client’s that receive services/supports through TC LHIN and how this intersects with the developmental sector services/supports. Play video
Hurry Up and Wait Your Turn: How to win at the waiting game
The waiting room can be a very difficult and often chaotic environment for anyone. Below are some helpful tips and tricks to help win the waiting game. It is important to remember that the way one can support a person during a doctor’s visit will depend on their individual needs and preferences. Read more
Scoop on Poop
Being regular, particularly in adulthood, is an “irregular” conversation starter. It is one of those topics that seem too “private” or perhaps too “stinky” to discuss in public. But the reality is that how we feel each day is closely tied to our bowels. Read more
Not Skirting the Issue: Discovering Ways to End Poor Health Care for Women with Developmental Disabilities
Women with developmental disabilities are less likely than other women in Ontario to have a pap smear which is how doctors screen for cervical cancer. They are also less likely to get a mammogram to detect breast cancer. Why does this matter? If we have health problems and they aren’t detected early, small problems can become big ones, and can even lead to death. Every woman has a right to get health care early before problems become too serious. Read more
Movember and Men’s Health: What You Should Know!
While men in general can have health problems that they often ignore because they don’t like to talk about their health and how they are feeling, having a disability makes it even harder. Read more
Medication, Education and Advocacy: Improving How People With Developmental Disabilities Use Medication
Medication use is very common for individuals with developmental disabilities. But medications can also lead to problems when you struggle with how to report whether a medication helps or not, or when others aren’t alert to the impact of the side effects. Read more
Building Sensory Gardens, Rooms & Kits: Enhance well-being, develop coping skills and reduce challenging behaviour, through Sensory Engagement
When considering the issue of quality of life for people with developmental disabilities, and particularly with those who have challenging behaviour, it is important to consider the role of sensory engagement in a holistic biopsychosocial approach. Read more
Neurodevelopmental Disabilities
Let’s Talk: An Open Dialogue on Vulnerability in Toronto Series:
Through collaboration and coordination, the Community Network of Specialized Care works to build efficient and effective cross-sectorial specialized service systems that support people with a developmental disability and mental health challenges (dual diagnosis) and/or challenging behaviour. Read more
Autism & 90-90-90: Reaching for the Goal
Presenting preliminary findings on ACT’s “ASD & HIV Prevention Needs Assessment” survey and explaining the impact the autism spectrum has on negotiating safer sex, accessing services, and community connection. Play video
Community Networks of Specialized Care
The purpose of the Community Networks of Specialized Care is to enhance service to adults with a developmental disability who need specialized care for co-existing mental health and or/ behavioural issues in Ontario. There are 4 networks: Northern Region, Southern Region, Eastern Region and Central Region. http://www.community-networks.ca
Collaborative Planning for Complex Individuals
Cognitive Impairment related to Narcotic Use
Excerpt from “Neurodevelopmental Disabilities” (Let’s Talk: An Open Dialogue on Vulnerability in Toronto Series)
Presenter: Lisa Orsi, Centre for Addiction and Mental Health (CAMH)
Progress in Disparities of People with Developmental Disabilities In Health Care
Excerpt from “Neurodevelopmental Disabilities” (Let’s Talk: An Open Dialogue on Vulnerability in Toronto Series)
Presenters: Angie Gonzales and Aamir Khan, Community Network of Specialized Care.
Primary Health Care of Adults with Developmental Disabilities Guidelines
The Developmental Disabilities Primary Care Initiative has brought together clinicians with expertise in the care of adults with developmental disabilities (DD) to improve primary care and quality of life for adults with developmental disabilities (DD). Primary Health Care of Adults with Developmental Disabilities Guidelines
With leadership and coordination from Surrey Place Centre, and funding from the Ontario Ministry of Children, Community and Social Services, the Ontario Ministry of Health and Long-Term Care, and Surrey Place Centre Foundation, Guidelines and Tools have been developed to help primary care providers to follow best practices in the care of these patients. These guidelines and tools are utilized in the Training Course for primary care providers that are offered on a yearly basis.
Health and longevity is related to lifestyle and predisposition to certain health conditions. Aging well depends on maintaining one’s health by making healthy choices. This checklist can help to identify aspects of the individual’s lifestyle that may result in health problems and those that promote good health. After completing the checklist, a good next step is to develop a plan for helping the person adjust their lifestyle choices wherever possible.
Checklist on Lifestyle
Do the person’s eating habits reflect awareness of and adherence to the Canada Food Guide? (For more information on the Canada Food Guide go to https://food-guide.canada.ca/en/
YES
NO
If not, what areas need to be changed?
What is the person’s weight and height? Is this a concern? How does it compare to the norm?
What does the person do for exercise? Is it done regularly? If not what are the possible physical activities the person may wish to start?
Walking
Golfing (without a ride-on cart)
Yard and garden work
Propelling a wheelchair (“wheeling”)
Cycling
Skating
Continuous swimming
Tennis
Dancing
Gardening
Mopping the floor
Yard work
Vacuuming
Stretching exercises
T’ai Chi
Golf
Bowling
Yoga
Curling
Dance
Heavy yard work (e.g. cutting/piling wood
Raking and carrying leaves
Lifting and carrying groceries
Climbing stairs
Exercises (e.g. abdominal curls/push-ups
Wearing a backpack to carry groceries or other items
Weight/strength-training routines
Living Situation
Where does the person live?
Central location close to amenities and services
Good location close to some amenities and services
Poor location, difficult to get to amenities and services
What are the risk factors associated with his/her place of residence?
Air pollution
Checklist for Health
Illness/injuries since last exam
Ear trouble or deafness
Hay fever-Asthma-Sinusitis
Head injuries
Heart disease
Palpitations
Shortness of breath
Jaundice
Haemorrhoids
Venereal disease
Tropical diseases
Back injuries / back problems
Foot troubles
Bleeding disorders
Use alcohol to excess
Allergies
Presence of Diabetes
Thyroid (especially in the case of Down Syndrome
Eye trouble
Nose or throat trouble
Headaches
Fainting spells—convulsions
Rheumatic fever
Lung disease or chronic cough
Indigestion
Rupture
Kidney and/or bladder trouble
Varicose veins
Skin disease
Broken bones
Rheumatism or joint trouble
Nervous disorders
Operations
Drug allergies
Diabetes management plan in place
ECG
For Women:
Breast Examination
Gynecological Examination (including pap smear)
For Men:
Prostate Examination
Medications:
Name / Dosage / Purpose
Sourced from “Transition Guide For Caregivers”, The Ontario Partnership on Aging and Developmental Disabilities http://www.opadd.on.ca
