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From time to time, the Waterloo Region Family Network (WRFN) is asked to distribute information on behalf of third parties. WRFN provides general information to self-advocates and families of children with special needs. The information provided on this website is not a recommendation, referral or endorsement of any resource, therapeutic method, or service provider. WRFN is not responsible for any information or services provided by third parties. You are urged to use independent judgment when considering any resource.

 


 

COVID-19 Disability Survey – Very Different than others

Researchers at the Centre for Chronic Disease Prevention and Management at UBC Okanagan have teamed up with Ontario-based Abilities Centre to launch a national COVID-19 disability survey. 

 

So, what makes this survey different from everyone else’s survey happening right now? The disability community will have access to the information from these surveys. This survey is not a snapshot in time, or used for any purposes other than to identify the needs of our community. The information collected will help develop meaningful advocacy, strategies and actions that will work towards meeting these needs. This survey will address needs over the long term, and questions will be informed directly by our disability community.

 

All Canadians who have a disability, or have a child or family member living with a disability in their household, are asked to share their unique experiences and concerns while navigating COVID-19. The survey is fully accessible. 

 

The information collected from the survey will directly impact policymakers, businesses and organizations across Canada as they develop accessible and inclusive policies, processes and services. 

 

To participate in the COVID-19 Disability Survey, visit abilitiescentre.org/disabilitysurvey

 

For more information, contact: disabilitysurvey@abilitiescentre.org or call 1 866 639 1858. 

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The Pandemic Canadian Autism Needs Assessment Survey Report

The Pandemic Canadian Autism Needs Assessment Survey and attached report was developed from a partnership between Autism Speaks Canada, the McMaster Autism Research Team (MacART) and the Canadian Autism Spectrum Disorder Alliance (CASDA). This partnership was built on a strong history of successful collaborations, and common guiding principles.

 

By coming together, we hope to achieve 3 shared goals:

  • To provide a mechanism (the survey) for Autistic people and their families to share their experiences of how they have been impacted by the COVID-19 pandemic.
  • To inform service organizations of what services and supports are most needed and helpful for Autistic people and families during this time.
  • To inform government of the need for increased supports for the autism community in response to the COVID-19 pandemic and future emergency situations.

Our survey was the first survey of the COVID-19 pandemic capturing the unique impact on the autism community in Canada. We are proud to have had 1,066 Canadians take part with 21% of respondents identifying as autistic.

 

Overall respondents shared:

  • Mental health implication of the pandemic
  • Impacts on their daily lives
  • Information about accessing supports and services

  

We are grateful to the dedicated participants of the respondents and for their input during these unprecedented times as we strive to amplify their voices.

 

Read the report here.

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Survey on Family perspectives about partnership with teachers in a time of Covid 19

Since March of this year, families have had the challenge of providing education at home in a time of a pandemic. For families who have children with disabilities, this has been an even more challenging time, with many families seeing their regular, IEP-mandated supports stopped or dramatically changed. Families may have also seen differences in interactions with teachers and other school personnel. Now, as students begin to return to school in the fall, it is critically important for families to share their needs to support their child with a disability to be successful.

 

Researchers from Queen’s University have partnered with the Family Alliance of Ontario to develop a short online survey (approx. 20 minutes to complete) to gather family perspectives about partnership with teachers in a time of COVID-19. They are looking for volunteers to participate in this survey – you are eligible if you are a caregiver of a child with a disability who is in the Ontario K-12 public school system.

 

In order to capture experiences that will occur as students resume school in various formats this month, we have extended the window to complete this survey until September 30, 2020. Results will then be compiled and shared with families and school stakeholders (school boards and the provincial government) to help inform and improve partnership with families in the 2020/2021 school year.

 

In appreciation of your time, you will be entered into a draw to win one of thirty $15 Amazon.ca gift certificates.

 

Click on this link to learn more and participate.  https://gmucehd.az1.qualtrics.com/jfe/form/SV_6PhSPzCtXdiCeFL

 

For more information about the survey, contact Heather Aldersey: hma@queensu.ca

 

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Children & Youth Planning Table data release.

Check out this timely child and youth well-being data released by the Children and Youth Planning Table Youth Impact Survey – Data Briefs surrounding mental and emotional health and belonging are now available.

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UofW User-focused study of robot interaction methods

The University of Waterloo is conducting as online study regarding a robot that facilitiates play between children regardless of special phyiscal needs. 

To get more information, click here.

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Transitional Care Study

The Centre of Family Medicine, Mobiliy Clinic and McMaster University are conducting a study for transitional youth with physical disabilities in Kitchener-Waterloo.

 

Youth individuals with special healthcare needs often lose the quality of care they received as children once they turn 18 years old and must transition to the adult healthcare system.

This study will assess the need for a local program that would aim to help youth individuals with physical disability make the transfer from specialized pediatric care to adult care.

 

Click here for study advertisment.

Click here for transitional alumnus consent.

Click here for youth & caregiver consent.

Click here for youth under 16 years old consent.

 

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Microboards

Information Gathering from those who have a Microboard, Aroha or Self-Directed Support Organization

Microboards Ontario provides leadership in the development of Microboards through education, advocacy and support to people and communities across Ontario. Our vision is that any person within Ontario who wants a Microboard is supported to have one.  

Currently, we are interested in finding out as much as we can about the experience of people with disabilities, their families and/or loved ones who have already established their own supportive not-for profit organization. This type of organization may be referred to as a Microboard, Aroha or Self-Directed Support Organization.

If you know someone in Ontario who has already created a Microboard, Aroha or Self-Directed Support Organization please pass this survey along by sending the link.

https://www.surveymonkey.com/r/?sm=qKW2b52U0sxY66hyAem8mHncEyFIlbZzAOAmpjz3ICo_3D

Note: This survey is completely anonymous. The data that we collect will inform our understanding and therefore Microboards Ontario’s strategic direction over the next few years.

If you are interested in having contact with Microboards Ontario for information and /or if you would like to share your story and insights with MBO, please contact us by emailing our Provincial Consultant, Judith McGill at jlmcgill11@gmail.com or calling at (416) 997-3311

Visit our website at www.microboardsontario.com.

 

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Nursing Care for People with Developmental Disabilities

It is based on a review of literature and was supported by a Faculty of Health Minor Research Grant.  

 

The project is a collaboration between the Office of Women's Mental Health Research in Mental Health (Dr. Nazilla Khanlou, Chair) and Nursing at the Centre for Addiction & Mental Health (Dr. Rani Srivastava, Chief of Nursing and Professional Practice at CAMH). 

Citation information:  Khanlou N, Khan A, Vazquez LM, Srivastava R, & Karunakaran A. (2019) 

Information Sheet 13: Nursing Care for People with Developmental Disabilities. Toronto: York University.  Available url:  https://nkhanlou.info.yorku.ca/files/2019/11/Final-Info-Sheet-Nursing-NKhanlou-Nov-2019.pdf

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Cognitive Behavioural Therapy workshop for postpartum depression

Not feeling yourself after having a baby? Since birth have you...

  • been sad and tearful?
  • felt overwhelmed or unable to concentrate?
  • lost interest of pleasure?
  • felt hopeless, frustrated, or angry?
  • fely anxious?
  • had difficulties connecting to your baby?

Our Place Family Resource and Early Years Centre is hosting a free one-day Cognitive Behavioural Therapy (CBT) workshop for postpartum depression. The workshops will be delivered by Dr. Ryan Van Lieshout, MD, PhD.


You may be eligible to participate in the workshop if you are 18 years of age or older and have given birth within the past 12 months.

 

The workshops are part of a study conducted by McMaster University.

 

To register for the workshop or to receive more information please contact the study coordinators, Meena Rangan and Haley Layton kw1daycbt@gmail.com.

 

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Better Nights, Better Days - Sleep Study

Development, implementation, and evaluation of an internet-based behavioural sleep intervention study for children, ages 4-10, with Attention Deficit/Hyperactivity Disorder (ADHD), Autism Spectrum Disorder (ASD), Cerebral Palsy (CP), and Fetal Alcohol Spectrum Disorder (FASD).


Learn more about this opportunity here.

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