First, congratulations on the birth of your baby!

Whenever you feel ready, here are a few suggestions:

Connect with Baskets of Love Down Syndrome Support Society, a BC nonprofit that delivers welcome baskets to families of new babies who have Down syndrome.

Join British Columbia Parents of Individuals with Down Syndrome, a private Facebook support group for parents and guardians. This is a great place to connect with other parents and find out about other groups and events both province-wide and in your area.

Check our Quick Links page for a list of regional BC Down syndrome societies and other helpful resources.

If you are looking for individual advocacy support, there are several organizations that may be able to help:

Family Support Institute is a nonprofit that supports families of individuals with disabilities and can offer support for advocacy and navigating the school, health and social support systems in BC.

Inclusion BC provides free advocacy support to families of children and youth with diverse learning needs, adults with intellectual disabilities and their families.

If you are looking for support regarding a possible human rights complaint, please contact the Community Legal Assistance Society.

Down syndrome BC was formed to be a collective voice of parents, guardians, self-advocates and caregivers living in British Columbia that will engage with healthcare providers, educators, community leaders and policymakers to create changes in our province to improve the health and wellbeing of individuals with Down syndrome, and their families and support groups. This means that our activities are focused on change at a collective, systemic or provincial level, not at the individual level. However, we still want to hear from you about the obstacles you are facing. We need to know what issues exist in the community as that helps inform our collective advocacy messaging.

Members can join DSBC committees, vote for board members at the Annual General Meeting, and run for board positions themselves. Members will receive emails from DSBC about our latest actions, and about opportunities to provide feedback or participate in meetings, surveys and other advocacy events.

But most importantly, by becoming a member you are adding to the power of our message; The more members we have, the more forceful our collective voice will be!

Membership is free and you can sign up here.

For families:

There are several regional Down syndrome societies which offer a range of supports and services. Find them listed on our Quick Links.

Down Syndrome Resource Foundation is a great local resource, providing intervention and education services, employment support and informational resources to families in the BC Down syndrome community.

Family Support Institute is a nonprofit that supports families of individuals with disabilities and can offer support for advocacy and navigating the school, health and social support systems in BC.

British Columbia Parents of Individuals with Down syndrome is a private Facebook group for parents and guardians to connect with families in BC!

For kids:

The Infant Development Program and Aboriginal Infant Development Program serve children from birth to three years old who are at risk for, or who already have a delay in development. Your healthcare provider may refer you or can self-refer!

Supported Child Development and Aboriginal Supported Child Development are community-based programs that offer a range of consulting and support services to children, families and child care centres so that children with extra support needs can participate in fully inclusive child care settings.

Early Intervention Therapies (PT, OT, SLP) may be available to your child through Child Development Centres, typically up to age 5. To find your nearest CDC, you can ask your healthcare provider or contact your local Ministry of Children and Family Development office. You can also try an internet search using the name of your nearest city and the words “child development centre”! Even if your child is over 5, you can still contact your CDC to find out about local programs, therapists and resources and some CDCs do continue services beyond the age of 5. Unfortunately there are currently no government-funded intervention therapy support programs for school-aged kids with Down syndrome, and families with kids aged 5 and up usually have very limited access unless they can pay privately (out-of-pocket, insurance, charity or bursary, etc). Children with additional diagnoses (autism, medical complexity, or high level of dependence in the tasks of daily living) can access Autism Funding and/or the At Home Program, both of which offer funding allowances for intervention therapies. Please note that the support framework for Children and Youth with Support Needs (CYSN) is changing, you can learn more here.

For adults:

CLBC offers a range of supports including employment, community inclusion and residential supports. You can find your local CLBC office here.

FSI’s WayFinders offers facilitation of person-centered planning and visioning to set the direction toward a full, inclusive life.

A Person with Disabilities (PWD) may be eligible for Disability assistance, which can provide financial or health support.

Your child with Down syndrome should attend whichever school you choose!

For most families, this means their child will attend their local catchment public school, but you can also pursue cross boundary enrolment, independent school, Online Learning or Homeschooling options. The learning supports available to your child may depend on which school district and which specific school your child attends. Please contact your local school district and school(s) directly to find out about their supports. You can search a list of BC public and private, online and in person schools by district name or number here.

On the topic of inclusion, we echo the recommendations of DSi’s International Guidelines for the Education of Learners with Down Syndrome: Learners with Down syndrome should be placed in mainstream classes appropriate to their age. Students should be withdrawn from those settings as infrequently as possible.

Other inclusive education supports:

BCEdAccess is a volunteer-run inclusive education advocacy organization here in BC. There is lots of helpful information on their website and they also have a private online Facebook group where you can connect with families of children with a variety of disabilities about their experiences in the BC school system.

Family Support Institute offers support to families navigating and advocating within BC systems, including the education system.

Inclusion BC provides advocacy support to families of children and youth with diverse learning needs.

We really appreciate it when educators make an effort to understand the unique learning considerations of their students with Down syndrome!

Down Syndrome Resource Foundation is a fantastic local resource. If you have a specific question, DSRF staff are the experts! Check out DSRF’s Down Syndrome Academy - there are live classes coming up this October: Supporting Learners with Down Syndrome in Inclusive Classrooms. We encourage you to attend!

We also encourage you to review Down Syndrome International’s International Guidelines for the Education of Learners with Down Syndrome and the Canadian Down Syndrome Society's Education Hub for lots of useful information!

Diagnosis

Please consult Down Syndrome Diagnosis Network’s Prenatal and Postnatal diagnosis guidelines. Looking for more inspiration on what to say? Watch DSDN’s video A Diagnosis Can Go Well

Children

Please consult the American Academy of Pediatrics 2022 Clinical Report Health Supervision for Children and Adolescents With Down Syndrome

Adults

Please consult Global Down Syndrome Foundation’s Medical Care Guidelines for Adults with Down Syndrome

The 2018 Canadian consensus guidelines on primary care for adults with Intellectual and Developmental Disabilities and H-CARDD’s Implementing Health Checks for Adults with Developmental Disabilities: A Toolkit for Primary Care Providers are also useful resources.

DSBC recommends the use of the National Task Group on Intellectual Disabilities and Dementia Practices’ Early Detection Screening Tool (NTG-EDSD) for people aged 40 and over who have Down syndrome