Information is power! The challenge is to find trustworthy information that is up-to-date (and to find the time to read it!). Here are a few of our favourite links for caregivers (some also have sections for professionals) and a brief description of each. We encourage you to browse… and share… these are all excellent links.

Please also contact us if you find other resources that you think are worth posting here.

There are two sections here:

a) General links of interest

These are all sites from the USA, which has a very different health care system compared to Canada. They also have a much larger population than Canada, including children with medical complexity. While the financial and legal information is site-specific, the general recommendations are useful for families, no matter where they live.

Complex Child
This is a monthly online magazine written by parents for parents. Susan Agrawal founded this resource in 2008. Not available in French.

There are many practical suggestions that could only come from someone who has lived “in similar shoes”. As always, you should seek the opinions of your child’s healthcare team for advice that is specific to your child. You can easily subscribe to the free monthly magazine; there are no commercial advertisements. There is a great section in the archives on coping and strategies for empowerment.

Don’t forget to look at these other sections from the archives:

  • “10 Tips for getting out of the house with a ton of equipment” and
  • “14 Tips for getting the best medical care during hospital stays”

The Center for Children with Special Needs
This is a site built by the Seattle Children’s Hospital in Washington, USA and although it was written mainly for families living in Washington, there are excellent resources here that are worth a look. Not available in French.

See these sections:

  • “Getting started after a new diagnosis” (videos of other parents offering advice and observations)
  • “For parents and caregivers”
  • “Care organizer”

Medical Home Partnerships Project
This website was created by the Washington State Medical Home Partnerships Project and has a wide range of information and downloadable materials for families, physicians and other providers. Not available in French.

In the section for families, there are practical tips provided for:

  • “Partnering with providers”
  • “Taking care of your family”
  • “Coordinating your child’s care”
  • “Organizing your paperwork”

Family Voices
This is a national site from the USA that focuses on parental empowerment and advocacy. Not available in French. Under the tab “Our work”, there are practical, printable resources on:

  • “Caring for your child”
  • “Advocating for your child”

b) Links for families in Quebec and Canada

One of the many reasons that we created this website was to better serve the needs of Canadian families caring for children with medical complexity. Health care in Canada varies by province and by region. Contact us to share high quality resources in your region, so that other families can benefit from the information.

Resources here include:

Financial aid resources

Child disability benefits (Canada)
This is a program which provides a tax-free financial benefit from the Government of Canada. It is meant for children who have a severe and prolonged impairment in physical or mental functions. There is an application form, with portions to be completed by the parents and another part which must be filled by a healthcare professional.

Child disability benefits (Quebec)
In Quebec, there are 3 levels of financial assistance for children with medical complexity, depending upon the severity of their functional impairments.

  1. The “child assistance payment” is for all children under the age of 18.
    In order to receive one of the following supplements, families must already be registered for the “child assistance payment”.
  2. There is a “supplement for handicapped children” which is meant for children with significant impairment; there is a form that must be filled by the parent and a healthcare professional.
  3. Lastly, there is a “supplement for handicapped children with exceptional care needs” which is meant for children with prolonged impairments causing severe multiple disabilities.

Guide de gestion révisé du programme d’aides matérielles pour les fonctions d’élimination pour les personnes ayant une déficience (MSSS-2019)
(not available in English)

This program is designed to meet the essential needs of people with disabilities requiring specialized or non-specialized equipment for urinary, intestinal and tracheostomy functions.

Online resources directory
A link to a directory of online resources developed by the Social Work department at the Montreal Children’s Hospital. A wide variety of resources; see:

  • Respite services
  • Income, debt and welfare assistance

Provincial homecare programs

NPHVA
This provincial organization supports non-invasive and invasive ventilation for both adults and children in the province of Quebec. They were key partners in the development of the Respiratory Care practices.

Programme Ministériel d’alimentation entérale
A link to Quebec’s provincial enteral feeding program. Information for families and healthcare providers. We collaborated together in the development of the Enteral nutrition care practices.

Family support programs

Children’s Wish
Children’s Wish is a national charity which seeks to grant wishes to children with life-threatening illness. Find more details here and information on how to apply for a wish.

Le Phare/The Lighthouse
Le Phare/The Lighthouse is a non-profit organization which seeks to brighten the lives of seriously ill children through a variety of services, including respite care.

Le Centre Philou
The Centre Philou offers 24/7 respite services, a developmental program and family support to children and young people with multiple disabilities in Quebec aged 0 to 29, as well as to their families, in complement with public services. All this in a warm and respectful environment for their condition.

L’étoile de Pacho
(not available in English)
This is a network of volunteers in the Montreal region who support families with high needs children. They offer a variety of services, including home visits, support groups and help resolving specific problems (for example, in obtaining services).

Parents jusqu’au bout
This is the website of parent-founded advocacy group. It started with a few parents who were determined to find better resources for their children with high care needs. The group name literally means “at the end of our rope”. They successfully lobbied the government of Quebec to provide improved funding for children with exceptional needs. See the information on this program here.

Respite services in the Montreal region

Check back later for updates here.

Respite services in other regions of Quebec

Check back later for updates here.