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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.

 


 

Virtual Health Care for Patients with Developmental Disabilities

What is working well?

What needs to be improved?

 

During Covid-19 there has been a huge increase in the delivery of virtual primary care. We are conducting interviews (online or by phone) to learn what is working well and what needs to be improved to support high quality care for patients with developmental disabililites.

 

We want to talk to...

  1. Adults with developmental disabilities (18+)
  2. Family members/caregivers
  3. Direct support professionals/support staff
  4. Primary care providers

Interested or want to learn more?

Contact Avra Selick at avra.selick@camh.ca or 416-535-8501 ex30127

 

*Small honorarium will be provided to all participants.

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Health Care Access Research & Developmental Disabilities Newsletter

Click here to read the March 2021 HCARDD Newsletter.

Topics include:

  • Doctors Answer Self-Advocates Questions about the Covid Vaccine
  • Protecting People with Disabilities:TELUS talks
  • If We Don't Count, They Don't Count
  • IDD: Get to Know Me-Perspectives on the Pandemic
  • IDD: Get to Know Me-IDD on the Frontlines
  • Developmental Disabilities in Ontario's Criminal Justice and Forensic Mental Health Systems
  • Virtual Health Care for Patients with Developmental Disabilities
  • The Welling and Mental Health Care Experiences of Adults with Intelluctal & Developmental Disabilities during Covid-19
  • Mental Health during Covid-19: A virtual course for family caregivers
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The Myth of Economies of Scale in Developmental Services

It is commonly believed that large congregated residential facilities for people who have developmental disabilities are less expensive to operate than group homes or supported independing living.

 

Yet information from the United States shows that, even for people with high support needs, large congregated facilities are in fact more costly than small group homes or supported independent living. Furthermore, smaller settings have been shown to support a higher quality of life amoung residents.

 

Read more about the myths of economies of scale in developmental services here.

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Research: Adapting Anxiety Intervention for Youth with Autism for Rapid Response to Covid

We are currently studying whether a group therapy program called Facing Your Fears (FYF), will help to reduce anxeity in children and youth with ASD. FYF is a modified cognitive behavioural therapy program for children and youth with ASD experiencing significant anxiety symptoms. We will provide everything virtually so that anyone can participate in this study from home.

 

This study is for children & teens between 8-13yrs old.

 

For more details, click here.

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Caregivers and Challenges with Special Education Needs

A graduate student from Conrad School of Business & Entrepreneurship (University of Waterloo) is doing a study to understand the challenges faced by people providing the frontline care for children with these special education needs. This includes parents, educators, occupational, speech & language therapists, social workers, doctors and behavioural clinicans. The research seeks to find the common pinch points faced by these frontline caregivers, especially now during the Covid-19 pandemic.

 

Participation in the study will consist of a short 10-30 minutes interview at a mutually agreed upon date and time. Interviews will be conducted over the phone. Questions will be focused on your experience finding or providing support for children with Special Education Needs.

 

If you are interested in more details about this research project and would like to participate, please click here for more details OR email May Alonge at malonge@uwaterloo.ca OR call at 1-825-882-1305.

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Autism Research Centre is researching a group virtual anxiety intervention for children and teens with Autism

We are currently studying whether a group therapy program called Facing Your Fears will help to reduce anxiety in children and youth with Autism Spectrum Disorder. 

For more information or get invovled, click here.

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The Autistic Voices Project

Are you an Autistic Adult whose job or job search has been impacted by Covid-19? 

Consider participating in this project about your employment experiences during Covid-19. Click here for more details or if you are interested in learning more, please contact vtomas@casda.ca.

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Housing for All Strategy

A Human Rights Based Strategy to Address Homelessness and Housing

Responding to public concern over homelessness and housing affordability expressed by the public in the Strategic Plan Environics Survey Council directed an Affordable Housing Strategy be completed by 2020 in collaboration with the Region of Waterloo community groups and development industry. Housing For All is the City of Kitchener's comprehensive strategy to realize the right to housing and help make housing affordable using the tools and resources available to a local municipality.

Click here to read the Housing For All Strategy report.

 

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Research Project

My name is Tetyana Ali, I am graduate student from Wilfrid Laurier University in the department of Kinesiology and Physical Education. I am currently exploring the lived experiences of caregivers and service providers of developmental disability in Ontario. I am also exploring disability policy and caregiver policy and how it affects caregivers in Ontario.

To achieve this, I hope to conduct one-on-one semi-structured interviews with primary informal caregivers, as well as executive directors of disability organizations/networks. If this is something you are interested in participating in, please let me know!

Due to the pandemic, the interviews will be conducted online via Microsoft Teams or over the telephone. The interviews may take between 60-90 minutes to complete.

 

Executive Director Criteria:

  • Currently employed by an organization that provides supports for individuals with developmental disabilities (ages 4-25)
  • Must have experience working with individuals with developmental disabilities for at least 12 months

 

Caregiver Criteria:

  • Caregivers of children/young adults with developmental disabilities
  • Could range anywhere from ASD, Down syndrome, cerebral palsy, Spina bifida, FASD, muscular dystrophy, intellectual disabilities, anything that has to with development can be included!
  • Caregivers must be primary
  • Those who are responsible for majority of care duties
  • Currently live or have lived with their care recipient within the last 12 months
  • Must have lived with the care recipient for at least a year
  • Caregiver must be informal
  • Unpaid for the care they provide
  • The caregiver must live within Ontario

Progression of the study and approximate time commitment:

  • Fill out a background questionnaire (approx. 5-10 min)
  • Fill out an informed consent form (approx. 5-10 min)
  • One-on-one semi-structured interview (approx. 60-90 min) over either MicrosoftTeams or over the telephone
  • All you need for MicrosoftTeams is google chrome and a webcam, I will send over more instructions if you choose to participate
  • If you allow it, the interview will be audio-recorded. This will allow me to transcribe the interview afterward for my analysis. I will be the only one to have access to this recording
  • You may still participate in the study if you decline audio-recording
  • Transcription check: after about 2 weeks' time I will send over a transcript of your interview for you to look over (approx. 10-15 min)
  • Here you will be able to change, add, or remove any information from the interview that you would like. I will not keep anything you wish to remove
  • Analysis check (OPTIONAL) around March 2021, I will send over the findings to you, if you wish you will be able to review these and give your opinion as well

For Research poster, click here.

 

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Racial Trauma & Healing

Are you a therapy client or therapist that self identifies as a person of colour?

Would you like to discuss your experiences in a research study?

 

Very little is known about the experiences of people of colour in psychotherapy practices in Canada. In this qualitative study, we will explore the experiences of therapy clients & therapist (RP & MSW) who identify as people of colour.

 

For more details on the study, click here.

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