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Introduction

Family caregivers of individuals with autism and intellectual and/or developmental disabilities face unique challenges that can affect their mental and physical health. Certain factors can increase or decrease the risk for negative effects, and a number of programs and supports have been shown to be beneficial.

This toolkit is designed to describe current knowledge around the experiences of caregivers of individuals with intellectual and/or developmental disabilities, to identify the importance of supporting caregivers, and to provide caregivers with information, tips, and resources.

This toolkit is divided into the following sections:

  • Description of the various types of challenges that caregivers can experience
  • Risk factors that can increase difficulties for caregivers
  • Protective factors that can help families cope when they are under pressure
  • Tips and resources for developing a support network and increasing protective factors for caregivers and their families
  • Activities to help identify your needs and create a support network

Jonas is a 7-year-old boy with autism. His parents, Kim and Dan, struggle with Jonas’ day-to-day care, particularly because they find his behaviours to be challenging. He often gets upset, and will yell, throw things, and is increasingly becoming aggressive towards Kim and Dan. These behaviours are especially difficult for them when they are outside of the home. They sometimes feel judged by others who don’t know them and don’t understand why Jonas is behaving that way. As a result, they are going out of the home less often, especially as a family.

Setareh is a 35-year-old woman with intellectual disabilities, mobility limitations due to Cerebral Palsy, and minimal verbal communication skills. Her parents, Mohammed and Leila, are finding they have less energy and ability to meet her complex health and care needs. Her 27-year-old brother, Ahmed, is being asked to help their parents with her care more and more. Setareh’s parents and brother are becoming increasingly worried about how her needs will be met in the future.


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Additional Programs and Resources (By Province)

ALBERTA

Autism Society Alberta

  • Their team is here to provide peer support, answer your questions about autism, provide resources and information, and help you navigate the various systems you may be trying to access in Alberta.
  • https://autismalberta.ca
  • 1-877-777-7192
  • info@autismalberta.ca

 

Autism Calgary

 

Autism Society Edmonton

  • OCCASIO is a social-recreational respite program for children and youth on the autism spectrum. The junior group is for children ages 7-12; the senior group is for ages 13-18 (past program participants can choose which age group to stay with). Occasio means “opportunity” in Latin, and although opportunity looks different for each participant, the goal of the program is to provide opportunities for growth. Occasio empowers participants to build relationships with their peers in a safe and supportive environment, while also providing families with easy access to respite support.
  • https://www.autismedmonton.org/programs
  • https://www.autismedmonton.org/programs/#occasio
  • (780) 446-1979
  • occasio@autismedmonton.org

 

Autism Society of the RMWB  (Fort McMurray, AB)

 

Chinook Autism Society

 

Gateway Association

 

Inclusion Alberta

  • Inclusion Alberta is a family-based, non-profit federation that advocates on behalf of children and adults with developmental disabilities and their families. We share a dream, with our partners and allies, where children and adults are valued, participating, and welcomed community members. We are deeply committed to enabling families and individuals to be fully included in community life.
  • https://inclusionalberta.org/what-we-do/inclusive-recreation/
  • (780) 453 5779
  • mail@inclusionalberta.org

 

Children’s Link Society

  • Children’s Link is highly collaborative and partners with many local organizations and service providers related to children and families with disabilities. These partnerships increase Children’s Link’s reach and impact in the sector. Children’s Link also draws from an extensive and up-to-date database of over 1,000 resources structured in a user-friendly format, helping both organizations and families find the right information that is unique to them.
  • https://childrenslink.ca/caring-connections-family-support/
  • (877) 835 1105
  • info@childrenslink.ca

 

Autism Asperger Friendship Society

  • AAFS provides respite care in a social and recreational environment for children, youth and adults on the spectrum of Autism; this includes, but is not limited to, Autism, Aspergers, Pervasive Developmental Disorder, Attention Deficit Hyperactivity Disorder and Non-Verbal Learning Disorder.
  • https://www.aafscalgary.com/aafsprograms
  • (403) 246 7383
  • info@aafscalgary
BRITISH COLUMBIA

Aspire Richmond (formerly Richmond Society for Community Living)

  • Family Respite Program
  • Family Respite Program is intended to provide families and primary caregivers with time for rest and renewal, which can be especially important for those who care for a child or adult with a developmental disability. The Family Respite program works with the family or caregiver to select qualified, paid respite care providers who will spend a few hours or an over-night period with their child or adult with developmental disabilities.
  • (604) 279 7040 
  • info@aspirerichmond.com

 

Autism BC

  • AutismBC Meets – Support Groups
  • AutismBC Meets are peer-to-peer support groups designed to help you build community. Whether you are a parent or caregiver of a newly diagnosed child, managing a child’s ongoing support needs, exploring your evolving role as a caregiver of an adult, seeking connections with other professionals, or discovering your own neurotype, there is an AutismBC Meets group for you.

 

Autism Support Network

 

Developmental Disabilities Association

  • Family Support Services
  • Family Support Services is designed to provide information and guidance to families of those with developmental disabilities. We also provide caregiver matching for respite care.
  • (604) 273 9778
  • hello@develop.bc.ca

 

The Family Support Institute of BC (FSI)

  • The Family Support Institute of BC (FSI) is continuing to grow this library of support tools and resources for BC families who have a family member with a disability.
  • Family Support Resources

 

Shuswap Children’s Association

 

Kinsight

  • Kinsight staff work together with adults with intellectual disabilities and their family members, on an individual or group basis, to seek information, answer their questions and identify their priorities. People often ask for assistance to explore options that are available to them, and seek guidance around times of change, or transition to a new way of living or stage of life. Kinsight offers home visits, support for meetings, workshops, and referrals to community and professional services.
  • Services & Support
  • (604) 525 9494
  • info@kinsight.org

 

Parent Support Services Society of BC (PSS)

  • All Support Circles follow a similar plan but the details for each meeting vary from one Circle to another. Participants discuss parenting concerns in the supportive setting provided. One of the most important things about Parenting Support Circles is that they respond to the needs expressed by the parents who attend them.

 

Strive

  • Strive Living Society’s Respite Services provide quality relief support to caregivers who need temporary or emergency reprieve. Strive offers temporary and emergency placements for individuals who require care so their caregivers can have some time to themselves. Strive also screens and pre-qualifies workers to go into the individual’s home, allowing the caregiver to leave the home or take a vacation. This service is offered to care providers as well as to funders or families who wish to pay directly for services.
  • Respite Services
  • (604) 936 9944
  • info@striveliving.ca

 

MANITOBA

Asperger Manitoba

  • Asperger Manitoba Inc (AMI) grew out of a support group for parents of adults with Asperger’s Syndrome who recognize the need for increased awareness, understanding and ongoing supports, specific to the needs of adults with Asperger’s Syndrome living and working successfully within the community. Later, AMI expanded its mandate to include children with Asperger’s Syndrome and their families in its mandate. Current activities include a facilitated Peer Support Group for adults with Asperger’s Syndrome and an informal support group for parents of adults with a diagnosis. AMI also provides limited direct support to individuals and their families as well as information sessions to organizations and groups supporting them.
  • https://www.facebook.com/AspergerManitoba/
  • http://www.asperger-manitoba.ca/resources/support-groups/
  • (204) 975 3010
  • info@asperger-manitoba.ca

 

Manitoba Possible

 

Autism Spectrum Disorders Manitoba

  • Explore our Support section to learn more about the types of support groups and organizations available to individuals who have ASD and their families. If you are aware of a Manitoba support group and it is not listed in this section, submit the resource online to have it added to our resource database.
  • https://asdmb.ca/information/support/
  • https://asdmb.ca/contact/
NEW BRUNSWICK

Inclusion NB (New Brunswick Association for Community Living)

  • Family Support Program
  • Inclusion NB offers personalized support and assistance to New Brunswick families who are caring for a child, youth, or adult with an intellectual or developmental disability. We help families, at all stages, navigate complex government and community agency systems, helping everyone have equal opportunity to fully participate in all aspects of life.
  • https://www.inclusionnb.ca/support-and-resources/
  • Toll Free: 1-866-622-2548
  • info@inclusionnb.ca

 

Autism Northwest (formerly known as the Northwest Autism Resource Centre (CRANO))

  • We are dedicated to providing quality services, information, and resources to individuals with autism, their families, and professionals in Northwestern New Brunswick. Our center is committed to offering a wide range of programs and activities to support individuals with autism.
  • https://www.autismeno.com/
  • Maillet Center, local 157
  • 12, avenue Ben-Martin, Saint-Basile, NB E7C 1E4
  • 506 580 1080
  • autism.no@gmail.com

 

Autism Connections

  • At Autism Connections, our mission is to empower individuals with autism by providing tailored support and resources. We believe that every person deserves the opportunity to thrive and reach their full potential.
  • https://autismconnections.ca/resources
  • admin@autismconnections.ca
  • 1666 Lincoln Road, Fredericton, New Brunswick E3B 8J6, Canada
  • (506) 450-6025
NEWFOUNDLAND & LABRADOR

Autism Society Newfoundland and Labrador (ASNL)

  • The CONNECTIONS COMMUNITY is an in-person & virtual autistic-led group that provides individuals with the opportunity to meet others with similar interests and lived experience. Together the group hosts discussions on various topics, as well as decides where they would like to meet and what activity they would like to take part in.
  • Where: You can attend either virtually or in-person at the centre in St. John’s. Meet locations change monthly.
    • Note: This is not a Support Group, however, the group does provide some comfort and understanding. CONNECTIONS is about having safe and positive social connections with others.
  • https://asnl.ca/support/
  • Elaine Dobbin Centre for Autism, 70 Clinch Crescent St. John’s, NL
  • Phone: 709-722-2803
  • info@asnl.ca

 

CareGivers NL

  • For nearly 30 years CareGivers has been one of Newfoundland and Labrador’s largest, and first accredited homecare agency, helping individuals and families throughout the island-portion of the province remain independent and fulfilled through strong client, caregiver relationships.
  • https://caregiversnl.com/
  • 1-855-432-7865
  • hello@caregiversnl.com

 

Inclusion Canada Newfoundland and Labrador

 

Easter Seals NL

  • Easter Seals Newfoundland and Labrador offers over 20 programs and services that help persons with disabilities, ranging from camps, recreational activities, to creative expression through music, dance and art, family events, to employment and educational disability awareness programs. These programs successfully assist those with disabilities in achieving new heights year after year. This includes everything from increased physical ability and self-esteem, to securing meaningful employment.
  • 206 Mount Scio Road St. John’s, NL A1B 4L5
  • Phone: (709) 754-1399
  • Toll-free: 1 (877) 754-1399
  • info@eastersealsnl.ca
NORTHWEST TERRITORIES

Government of the Northwest Territories

 

Inclusion NWT

 

YWCA NWT FAMILY RESOURCE CENTRE

NOVA SCOTIA

Acadia University SMILE Program

 

Autism Nova Scotia

  • A community-based organization that fosters understanding, acceptance, and collaborative approaches for those with Autism Spectrum Disorders throughout Nova Scotia.
  • https://www.autismnovascotia.ca/
  • (877) 544 4495
  • (902) 446 4995 (in Halifax)
  • info@autismns.ca

 

Cape Breton Community Respite

 

Caregivers Nova Scotia

  • Offers information, support and educational workshops to families and friends who are giving care to someone with a physical or mental health condition, chronic illness, or who is frail or elderly. All programs and services are free.
  • tthp://caregiversns.org/
  • (877) 488 7390

 

Autism Bedford Sackville

  • You are invited to join us for an in person evening of discussion and support.
    It will be a relaxed atmosphere, stress-free and without judgment. These meetings are free and open to parents/ caregivers of persons living with Autism.
    We usually meet on the first Tuesday of every month from 7-9pm.
    Meeting will be held at ANS Bedford office, Suntower Bedford, 3rd floor, Boardroom.
  • https://www.autismnovascotia.ca/chapter/bedford-sackville/
  • 1658 Bedford Hwy,
  • Bedford, NS B4A 2B6
  • bedfordsackville@autismns.ca

 

Northern Region Respite Services

  • Regional respite coordinator for Northern Nova Scotia
  • http://respitens.ca/
  • Darean McCormick – dmccormick@autismns.ca
  • 902-446-4995 ext.24 (office)
  • 782-414-5592 (cell)
  • 5945 Spring Garden Road
  • Halifax, NS. B3H 1Y4
NUNAVUT

The Government of Nunavut

 

Health and Wellness – Iqaluit Tukisigiarvik Centre

 

Kamatsiaqut Helpline

ONTARIO

York Support Services Network

 

Sunbeam Developmental Resource Centre

  • We offer a range of professional and support services to individuals of all ages with a developmental disability and/or an autism spectrum disorder (ASD) We assist individuals and their caregivers in accessing community services and supports
  • https://www.sdrc.ca/ontario-autism-program-oap/
  • (519) 741-1121

 

Community Living North Halton

  • Community Living North Halton is offering Foundational Family Services which supports capacity building for families to support their child’s learning and development. The services that will be offered are outlined below. Services are available to all families in the Ontario Autism Program at any time and are based on a family’s changing needs over time. Services will be offered in a variety of ways including virtual support and services are available to families at no cost.
  • https://clnh.on.ca/services-support/
  • 905.878.2337
  • info@clnh.on.ca

 

Kerry’s Place Autism Services

  • We are Canada’s largest service provider to families with children, adolescents, and adults, with Autism Spectrum Disorder Through the Ontario Autism Program, we provide children and youth – and their families – a menu of timely, evidence-based services needed to achieve their goals at home, at school, and within their communities. This initiative serves individuals with ASD up to age 18, delivering skill-building groups, individual consultation, parent training and coaching, system navigation and family support.
  • https://kerrysplace.org/autism-services-ontario/ontario-autism-program/
  • 905-841-6611
  • 1-833-775-3779
  • info@kerrysplace.org

 

Canopy Support Services

  • The new needs-based Ontario Autism Program (OAP) includes a broad range of services that offer more supports designed to meet the individual needs of your family and child or youth.  Foundational Family Services are available to all families registered in the OAP as part of the new needs-based program.  Foundational Family Services are offered at no cost to the family, and aim to provide tools to work with your child or youth, and to participate in their ongoing learning and development.
  • https://www.canopysupport.ca/autism-services/#foundational
  • 705 876 9245
  • info@canopysupport.ca

 

Counselling Services of Belleville and District

  • Counselling Services of Belleville and District is a non-profit community based resource agency responding to the need for assessment, counselling, advocacy and support. We strive to enhance the effectiveness and well-being of persons of all ages, families and the community.
  • http://www.csbd.on.ca/
  • (613) 966-7413
  • csbd@csbd.on.ca

 

Strides Toronto

 

Surrey Place

  • Early and ongoing supports and services can enhance long-term outcomes for children and youth with autism. Our Autism Services offers helpful opportunities to thrive at home, school and in their community. We use a comprehensive clinical approach to help children and youth develop skills in a range of areas
  • https://www.surreyplace.ca/services/autism-services/
  • (833) 575 5437

 

Bethesda Children’s Services

 

Lansdowne Children’s Centre

  • Our Autism Services are part of the wide range of programs and services that Lansdowne offers to support children & youth with developmental, physical and communication disorders. These include Speech-Language Therapy, Occupational Therapy, Physiotherapy, Social Work, Service Coordination, Medical Staff, Respite, Recreation, and Early Intervention programs that support them at the centre and in the community, home, and school environments. Collaboration with other services provided to your child or youth will assist in meeting his/her needs.
  • https://www.lansdownecentre.ca/autism
  • (519) 753 3153
  • info@lansdownecc.com

 

Thames Valley Children’s Centre + John McGivney Children’s Centre

  • Foundational Family Services are a broad range of services and supports designed to help parents and caregivers learn how to support their child or youth with autism. Through coaching sessions, education workshops, and visual and written resources, you will learn new strategies to help you refine the great things you are already doing to support your child. These services give you more tools to work with your child or youth with autism and participate in their ongoing learning and development.
  • https://www.tvcc.on.ca/program/foundational-family-services
  • 519.685.8700
  • info@tvcc.on.ca

 

Leaps and Bounds

  • Our Respite Service is accessible for children, adolescents and adults with a wide variety of needs throughout Ontario. Programs are designed on an individual basis in collaboration with families or care providers. The goal is to teach and integrate positive learned skills in day to day living. Respite Services can be accessed for day, evening, and overnight hours, throughout the year. Our unique service allows children the enriched experience of learning skills in and one to tone therapeutic setting. These skills are then generalized to their peers and other adults in the appropriate integrated community program.
  • https://www.leapsandboundsservices.com/services/respite/
  • (905) 508-6543
  • deanna@leapsandboundsservices.com

 

Grandview Kids

 

Firefly

  • PHYSICAL, EMOTIONAL, DEVELOPMENTAL, AND COMMUNITY SERVICES
  • As a multi-service agency, FIREFLY is an active participant in supporting and strengthening the health and well-being of children, youth and families, and communities across Northwestern Ontario.
    FIREFLY services focus on responding to the diverse and often critical needs of families and communities by utilizing a wide range of physical, emotional, developmental and community services.
  • https://www.fireflynw.ca/
  • (800) 465 7203
  • info@fireflynw.ca

 

Lumenus

  • Respite Services provides parents/guardians/caregivers with a break and youth and adults with a developmental disability with socialization opportunities, as well as opportunities to learn and enjoy recreational activities. This program is for youth and adults with a developmental disability and/or mental health challenges (who may or may not have physical challenges) who live at home and require support in their home, school and/or community.
  • https://lumenus.ca/programs-and-services/respite-services/
  • (416) 222 1153
  • info@lumenus.ca

 

Alamguin Highlands Community Living

  • Respite Services provides a period of rest and support to families. Services are available to both adults and children. We also offer various training opportunities to Respite Providers and parents.
  • http://www.ahcl.org/respite/
  • (705) 384-5384
  • admin@ahcl.org

 

Haldimand-Norfolk REACH

  • Respite Services offers families and individuals the opportunity to acquire planned periods of relief through several different programs offered through Developmental Services at REACH.  Respite is very individual in nature and is designed to be unique to meet the different needs of children, families and individuals who require support.
  • https://www.hnreach.on.ca/services/parents-caregivers/
  • (519) 587 2441
  • info@hnreach.on.ca
PRINCE EDWARD ISLAND

Autism Society of Prince Edward Island (ASPEI)

 

Prince Edward Island Association for Community Living (PEIACL)

  • The Prince Edward Island Association for Community Living (PEIACL) is a family-based association empowering people with intellectual disabilities and their families to lead the way in advancing inclusion in their own lives and in their communities. We do this by sharing information, fostering leadership for inclusion, facilitating networking, connecting people and opportunities and promoting rights and values in keeping with the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD).
  • https://peiacl.org/supporting-families/
  • 40 Enman Crescent Room 273
  • Royalty Centre
  • Charlottetown, PEC1E 1E6
  • 902-439-4607
  • familysupport@peiacl.org

 

The Stars for Life Foundation for Autism

QUEBEC

Autisme Montréal

 

La Maison de l’autisme

  • The Autism Center offers a variety of services, including free workshops for parents, classes for adults and adolescents with ASD, as well as private consultations and self-help interventions
  • https://en.lamaisondelautisme.ca/
  • (514) 625 3258

 

Le petit répit

SASKATCHEWAN

Autism Services of Saskatoon

  • Family and AIP & MHWT Programs, scheduled four times a year, offer resources for adults, youth & children with Autism Spectrum Disorder and their families.
  • https://autismservices.ca/services/family-programs/
  • 209 Fairmont Drive
  • Saskatoon, SK, S7M 5B8
  • (306) 665 7013

 

Autism Resource Centre

YUKON

Offered at Autism Yukon

    Contact

    Caregiver Skills Training Program

    • (facilitated by our Project Coordinator, starting in early 2022 but registration is open now) 

    PEERS

    • PEERS is an evidence-based, social skills intervention program for motivated adults who are interested in learning ways to help them make and keep friends. During each group session, young adults are taught important skills and are given the opportunity to practice these skills in session during socialization activities.

    Launch Into Life

    • The Launch Program helps families prepare for and respond to key life transitions, and to guide the journey from adolescence to adulthood.  Families will create an individualized Transition Plan with their teen or young adult and be provided with valuable information to help their teen/young adult succeed. 

 

Community Programs/Camps:

 

Camp Raven

  • LDAY hosts day camps for children with learning difficulties during the summer vacation and March break. Each camp is led by skilled counsellors who work with the campers to create a fun, safe and non-threatening environment. Camp is a space that is inclusive, welcoming, and geared towards ensuring the participants have a great week! At LDAY, we want everyone to be able to reach their maximum potential, and camp has been striving to accomplish this goal for over 30 years.
  • https://ldayukon.com/camps
  • (867) 668 5167
  • office@ldayukon.com

 

Easter Seals Camp


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