I’m Caring for Someone with a Developmental Disability
A developmental disability can impact a person’s life in many ways, including intellectual abilities, daily living skills, language or communication skills, learning and physical abilities. Caregiving or supporting someone with a developmental disability is often lifelong in nature and the caregiving experience varies widely depending on the needs of the person being supported.
Supporting a person with a Developmental Disability
The experience of caregivers or those supporting someone with a developmental disability can vary depending on the strengths and needs of the individual. While a developmental disability impacts how a person lives their daily life, there are resources, tools and supports to help you and them enjoy a full and meaningful life. These supports can help,
- strengthen your loved one’s communication and/or advocacy skills,
- build a circle of supportive relationships with people who they trust and who care about them,
- explore their interests and passions,
- as well as grow their independence, build a healthy lifestyle and become well connected to their community.
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Get connected to services as early as possible
In some cases, the services are free and in other cases there may be a fee for service. Please check with the service provider.
Under 18 years of age:
- Early screening and assessment is important and contributes to early intervention services that can help children who need support with physical, cognitive, social, adaptive, or emotional development. Ontario Association for Infant and Child Development has resources about early intervention
- Reach out to your family doctor or local health provider for early diagnosis and to get connected to services and supports for your child or youth. Click here if you need help finding a family doctor
- Find a service navigator to help connect you to the services you need:
- https://www.surreyplace.ca/services/ Toronto, Greater Toronto Area & Northern Ontario
- https://www.autismontario.com/
- Learn about resources and tools for you and the person you care for at https://www.surreyplace.ca/resources/ and ConnectABILITITY.ca
- Ask your healthcare provider for more information on how specialized therapists like occupational, physiotherapists and speech-language therapists can help you.
Over 18 years of age:
- If you are a caregiver to a youth 18 years or older or an adult living with a developmental disability, contact Developmental Services Ontario (DSO) your access point for adult developmental services. You can contact DSO at 16 years of age to begin the application process.
- Based on a referral by Developmental Services Ontario Community Networks of Care provides coordinated care plans for adults who have developmental disabilities with complex care needs.
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Financial Assistance and Community Supports
Learn more about financial supports for caregivers on the OCO website here.
There are different funding opportunities and programs depending on the age of the person you support/care for.
For individuals under 18 years
- Learn about financial assistance available to families of children 0-17 years with a developmental disability at Surrey Place
- Learn about funding and respite options here
- Find out if you qualify for Special Services at Home ( SSAH) – Surrey Place tip sheet
- Find out about financial assistance for children with severe disabilities here
For individuals 18 years and older
- If you are a caregiver to a person 18 years or older living with a developmental disability, contact Developmental Services Ontario your access point for adult developmental services and Passport (financial support)
- Ontario Disability Support Program (ODSP), adults with a formal diagnosis are entitled to receive ODSP
- To learn about home and community support services available to people of all ages in Ontario who require care in their home, at school or in the community click here.
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Consider Transitions & Planning for the Future
- For caregivers and parents of children with disabilities Easter Seals Kids At School has information and resources about school and learning plans such as Individual Education Plans (IEP), Identification Placement and Review Committee (IPRC) and transition planning.
- Transition in care – Healthcare Transitions Tools – Surrey Place
- Resources – Learn about ways to support the person you care for during various transition points https://www.surreyplace.ca/resources/transition-resources-for-high-school-post-secondary-and-beyond/
- Transition toolkit- Partners for Planning Network
- Partners for Planning Network offers a variety of webinars and resources to help individuals achieve their goals and plan for the future.
- Early Planning Toolkit – https://www.planningnetwork.ca/resources/early-planning-toolkit-overview
- Transitioning to High School – https://www.planningnetwork.ca/resources/transitioning-to-highschool-toolkit-overview
- Beyond Graduation Toolkit – https://www..ca/resources/planning-for-a-good-life-beyond-graduation-toolkit-overview
- Aging with a Developmental Disability – Planning for Success
- Family Support Network for Employment
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Tips for Caregivers
The experience of supporting an individual with developmental disability can vary widely. Below are a few ways that caregivers can connect to peers and find supports and resources to meet their unique needs.
Connect with your peers
- Partners for Planning Network offers a map of Family Support Networks across Ontario
- Family Alliance Ontario has Family Support Networks across Ontario
- Learn more about OCO’s Peer Support programs.
Get support at home
- Learn about respite services in your community
Get connected to the support you need
- Call the Ontario Caregiver Helpline 1-833-416-2273 for information and referrals to connect you to the support you need for you or the person you care for in your community.
- Join one of our programs
- Watch for symptoms of caregiver stress such as sleep problems, headache, irritability, and withdrawal. Adequate sleep, exercise, and proper nutrition can all help to reduce your stress. Learn about your mental health and caregiving
Resources to help you in your caregiving role
- Partners for Planning Network has webinars and newsletters, resources to find support networks, plan for the future, estate planning and more.
- ConnectABILITY for resources, tools, community hub and activities
- Use The About My Health form developed by the Developmental Disabilities Primary Care Program at Surrey Place. Fill this out so you can share important information with new health care providers. Having this information ready can help appointments run more smoothly.
- Use The My Health Care Visit form developed by the Developmental Disabilities Primary Care Program at Surrey Place. This form can be filled out during a health care visit to help you understand what was discussed during the appointment and any information you will need to know for follow-up.
- The I am a Caregiver toolkit includes important information for the new or seasoned caregiver. This information was created by caregivers, for caregivers.
- Caregiver 101 e-learning 45 +min. Learn about caregiver roles, conflicts, caregiver burnout and what to expect
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Additional Resources
- See also I’m caring for someone with autism
- Visit Partners for Planning Network for resources to find support networks, plan for the future, estate planning and more.
- Health Care Access Research and Developmental Disability
- Siblings Canada
- Holland Bloorview Kids Rehabilitation Hospital
- Canada FASD Research Network offers resources to support caregivers in their role.
- Call 211 or visit www.211.ca for free and confidential information about Canadian health and community services available in your area
Not sure where to start? Call our 24/7 helpline or talk to us in our live chat to find resources in your community.
Sources:
Primary care of adults with intellectual and developmental disabilities
William.F. Sullivan et al. Canadian Family Physician Apr 2018, 64 (4) 254-279;
https://www.cfp.ca/content/64/4/254
https://www.nichd.nih.gov/health/topics/idds/conditioninfo
https://www.mayinstitute.org/autism-aba/developmental-disabilities.html
https://braininstitute.ca/research-data-sharing/neurodevelopmental-disorders
https://www.cdc.gov/ncbddd/developmentaldisabilities/facts.html
https://www.caregiver.org/caring-adults-cognitive-and-memory-impairment