EXPLANATORY NOTE

The Bill amends the Regulated Health Professions Act, 1991 to require that the Minister ensure that up-to-date, evidence based information relating to Down syndrome is made available to members and to the public. The Act is further amended to require that members share this information with expectant parent or parents when they communicate a prenatal diagnosis of Down syndrome and that they refrain from recommending any further testing or treatment in relation to the diagnosis of Down syndrome for a 48-hour period unless explicitly requested or unless the member is of the opinion that the performance of the testing or treatment is necessary during the 48-hour period.

Bill 225 2020

An Act to amend the Regulated Health Professions Act, 1991 respecting the provision of information respecting Down syndrome by regulated health professionals

Preamble

Persons with Down syndrome and their families have historically faced discrimination and have been victims of eugenics.

The discrimination faced by persons with Down syndrome continues to persist in the province of Ontario. This discrimination impacts how persons with Down syndrome access services of the provincial government, including those provided within the health care system. Such discrimination results in inequitable treatment and the exclusion of persons with Down syndrome, often limiting their full participation in the economic, social and cultural aspects of our province.

Discrimination often begins with the prenatal diagnoses of Down syndrome, when families are provided outdated, incorrect or biased information based on antiquated models of disability. This information impacts how families understand the life expectancy, life outcomes, cognitive or physical abilities, as well as psychosocial outcomes of persons with Down syndrome.

Misinformation regarding a diagnosis of Down syndrome reinforces negative stereotypes and can cause undue stress and hardship for families.

Therefore, Her Majesty, by and with the advice and consent of the Legislative Assembly of the Province of Ontario, enacts as follows:

1 Section 3 of the Regulated Health Professions Act, 1991 is amended by adding the following subsections:

Information relating to Down syndrome

(2)  Without limiting the generality of subsection (1), it is also the duty of the Minister to ensure that up-to-date, evidence based written information relating to Down syndrome is made available to members and to the public, which must include the following information:

   1.  Information about life expectancy, cognitive and physical development, education outcomes and psychosocial outcomes of persons with Down syndrome.

   2.  Information about resources for families who have a family member with Down syndrome.

   3.  Information about resources and supports available from community organizations across the province that are developed or approved by the Ministry of the Minister.

Review of information

(3)  Before making any information available to members and to the public, the Minister shall ensure that consultations take place on the content of the information with,

  (a)  members with particular expertise in Down syndrome; and

  (b)  organizations representing or advocating for persons with Down syndrome.

Languages

(4)  The information shall be made publicly available in both English and French, as well as in any other languages that the Minister considers appropriate.

2 The heading before section 27 of the Act is amended by adding “and Responsibilities” at the end.

3 The Act is amended by adding the following section:

Information about Down syndrome

29.2  (1)  When communicating a prenatal diagnosis of Down syndrome, a member shall provide to the expectant parent or parents the written information relating to Down syndrome made available by the Minister under section 3.

Waiting period

(2)  After providing the information under subsection (1), the member shall not, until 48 hours have elapsed since the information was provided, recommend any further testing or any treatment in relation to the diagnosis of Down syndrome unless explicitly requested by the expectant parent or parents or unless the member is of the opinion that it is necessary to perform the testing or treatment during the 48-hour period.

Same

(3)  The member shall inform the expectant parent or parents of the 48-hour waiting period described in subsection (2) and, unless the member is of the opinion that it is necessary to perform testing or treatment during the 48-hour period, indicate to the expectant parent or parents that they may wish to wait out the 48-hour period before requesting any further testing or any treatment in relation to the diagnosis of Down syndrome.

Commencement

4 (1)  Subject to subsection (2), this Act comes into force on the day it receives Royal Assent.

(2)  Sections 2 and 3 come into force six months after the day this Act receives Royal Assent.

Short title

5 The short title of this Act is the Harvey and Gurvir’s Law (Provision of Information Respecting Down Syndrome), 2020.