Residential Options for Ontarians with PWS

 

Journey to Belonging is Ontario’s vision for developmental services where people with developmental disabilities fully belong in their communities and are supported to live the lives they choose.

 

We are working on ways to address the unique needs of the PWS population and to proactively plan for future success.

 

We believe that innovations and learnings from past and current housing initiatives, best practices from PWS residential settings and service providers in Ontario and other jurisdictions, and proactive service provider and community engagement, education and planning can be applied to create positive, successful community-based solutions for our adults with PWS.

 

We are Stronger Together!

 

Activating, Engaging and Leading: A Collaborative Path to Housing for People with PWS – November 30, 2022 OPWSA Conference Presentation

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Supportive Housing for People with PWS: Residential Options Working Group Report - October 20, 2018 OPWSA Conference Presentation

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We welcome your input and involvement. Please contact Cathy Mallove, Chair, OPWSA Residential Options Family Support Network, cmallove@gmail.com, 416-822-5169 to join our Residential Options Family Support Network mailing list and to share…

• Your ideas or suggestions on ways OPWSA can support you related to housing

• How you’d like to be involved and help our efforts, such as reaching out to local service providers in your area, supporting political advocacy, participating in future engagement workshops, fundraising, arranging get-togethers for our adult children…all and any ideas welcomed! 

• Suggested resources and contacts for this web page

 

        

What Can Parents Do? Activate!

 

Get Informed and Stay Connected

 

There are many organizations and resources to learn from:

 

• Developmental Services Ontario

  • DSO Housing Toolkit

  • Connect with your DSO Housing Navigator

  • Sign up for DSO updates and webinars

  • Follow DSO on Facebook

• Steps to Independence Guidebook

• P4P Planning Network

• Plan Institute Safe and Secure Guidebook 

• Canadian Centre for Caregiving Excellence

 

Develop Your Vision and Plan

• Join a DSO or P4P Housing Workshop / Webinar

• Start having the conversation with your family member with PWS

• Develop your vision and Person Directed Plan

• Build a support circle (with help from an Independent Facilitator)

 

Plan and Prepare

• Financial Planning and Funding

  • ODSP

  • Passport Funding (through local DSO)

  • RDSP

  • Disability Tax Credit

  • Home and Community Care Supports

• Estate Planning

  • Inspiring Possibilities Guidebook

  • Consult a lawyer familiar with sheltered trusts, capacity for decision making, or other legal items

  • Microboards Ontario

 

Build Your Network – We are Stronger Together

• Some helpful organizations and newsletters

  • Community Living Ontario and Community Living Toronto

  • Families for a Secure Future

  • Microboards Ontario

• Connect to PWS families and communities

  • National Canadian Organization:

    • Foundation for Prader-Willi Research Canada

  • Provincial Organizations:

    • British Columbia Prader-Willi Syndrome Association

    • Saskatchewan Prader-Willi Network

    • Association Prader-Willi Québec

  • International Prader-Willi Syndrome Associations:

    • IPWSO

    • PWSA USA

    • Foundation for Prader-Willi Research

  • Facebook and Instagram: search "Prader-Willi Syndrome" or #PWS to find postings

• Connect to other special needs networks

  • Special Olympics

  • School / Programs

  • Local Communities

  • Faith-based communities

 

Some Helpful Links and Resources

• Community Living Ontario Innovations in Housing for People who have an Intellectual Disability: Spotlighting nine models that support greater independence and choice

• Ontario Developmental Services Housing Task Force: Report on 18 Innovative Housing Projects

• Individualized Funding Coalition for Ontario:  Now Is The Time: Key Principles and Core Elements to Bring About Effective Individualized Funding Mechanisms

 

Energize and Advocate

• Introduce yourself to your local DSO housing navigators

• Identify agencies/service providers in your area for OPWSA introduction

• Identify potential like-minded families to partner with

• Identify potential housing opportunities – developers, homes, apartments

• Join the OPWSA Residential Options Working Group! Contact Cathy Mallove at cmallove@gmail.com or 416-822-5169

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Data From the Global PWS Registry

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The purpose of the Global PWS Registry is to develop a comprehensive database of individuals with PWS to better understand the full spectrum of PWS characteristics, to expedite the completion of clinical trials, and to determine areas of needed research and treatments to improve the lives of those affected by PWS.

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Below is an infographic on data from the Global PWS Registry exploring where individuals with PWS are living, as well as family satisfaction with the current living situation.