Transition to Adult Care: Caregiver Resource Guide

• 1. Getting Started

  About My Health Worksheet 

  Worksheet for adults with intellectual/developmental disabilities (and caregivers) to record health, communication, and personal-support information for providers. 

  https://ddprimarycare.surreyplace.ca/wp-content/uploads/2021/03/5.1-About-My-Health-new.pdf 

  • Bring a completed copy to adult appointments. 
  • Update after major changes (medications, equipment, supports). 

  Advance Care Planning & SDM (Substitute Decision Maker) 

  Identify who can make health decisions when an individual is unable; Ontario guidance on SDM roles. 

  https://advancecareplanningontario.ca/substitue-decision-makers/who-is-my-sdm 

  • Confirm SDM(s) and discuss values/goals. 
  • Document preferences and share with the care team. 

  Guardianship & Decision-Making Supports

  Legal arrangement authorizing a substitute decision-maker to make financial/personal-care decisions for an adult found mentally incapable; includes alternatives and capacity overview. 

  Ontario Guardianship | Tutelle* 
  Alternatives (PooranLaw) 
  Video discussing capacity and guardianship 

  • Explore supported decision-making before guardianship. 
  • Seek legal advice for complex situations. 

  Medical Terminology Abbreviations 

  Quick reference to common medical abbreviations used in healthcare. 

  https://medicscenter.com/wp-content/uploads/2017/08/termabbrev.pdf 

• 2. Common Abbreviations
  • ACSD – Assistance for Children with Severe Disabilities 
  • ADP – Assistive Devices Program 
  • CDB – Canada Disability Benefit 
  • CCKO – Complex Care for Kids Ontario 
  • CNSC – Community Networks of Specialized Care 
  • DTC – Disability Tax Credit 
  • DSO – Developmental Services Ontario 
  • HCC – Health Care Connect 
  • MCCSS – Ministry of Children, Community and Social Services 
  • OHAH – Ontario Health at Home 
  • ODSP – Ontario Disability Support Program 
  • OPGT – Ontario Public Guardian and Trustee 
  • RDSP – Registered Disability Savings Plan 
  • RESP – Registered Education Savings Plan 
  • SDM – Substitute Decision Maker 
• 3. Health & Community Services

  Health Care Connect (HCC) 

  Ontario program that helps people without a family doctor/nurse practitioner find one. 

  Find a doctor or nurse practitioner | Trouver un médecin ou une infirmière praticienne*

  • Register online; have health card ready. 
  • Request providers experienced in complex care. 

  Ontario Health at Home (OHAH)  

  Provides home and community care services. 

  Ontario Health atHome | Santé à domicile Ontario* 

  • Request nursing, therapies, respite, and care coordination. 
  • Share the About My Health worksheet with the care coordinator. 

  Ministry of Children, Community and Social Services (MCCSS) 

  Ontario ministry delivering programs and supports for well-being, safety, and inclusion. 

  Ministry of Children, Community and Social Services  | Ministère des Services à l’enfance et des Services sociaux et communautaires* 

  Community Networks of Specialized Care (CNSC)

  Supports adults with developmental disabilities and complex needs through coordinated services. 

  Community Networks of Specialized Care | Réseaux Communautaires de Soins Spécialisés* 

  Developmental Services Ontario (DSO)

  Access point for adult developmental services; application required for MCCSS-funded support. 

  English DSO | French SOPDI* 

  • Apply early (as early as 16yrs) 
  • Prepare diagnostic records, ID, and assessments. 
  • Ask about respite, community participation, supported living. 

  Complex Care for Kids Ontario (CCKO) 

  Supports coordinated care for children with medical complexity; provides transition tools. 

  CCKO Youth Transition to Adult Care Toolkit 

  • Use the checklist to track tasks across health, education, and community. 
  • Share with care team to coordinate responsibilities. 

  Pediatric Palliative Care Resource Hub

  Practical, clinically relevant tools designed to strengthen care delivery for children and families across Canada. 

  Resource Hub | Centre de ressources*

• 4. Financial & Legal Supports

  Assistance for Children with Severe Disabilities (ACSD) 

  Financial support for families caring for a child with severe disabilities. 

  Assistance for Children with Severe Disabilities Program (ACSD) | Programme d’aide à l’égard d’enfants qui ont un handicap grave (AEHG)*

  • Check eligibility and required documentation. 
  • Coordinate with ODSP planning as youth approaches adulthood. 

  Assistive Devices Program (ADP)

  Helps cover costs of assistive devices for Ontario residents. 

  Assistive Devices Program | Programme d’appareils et accessoires fonctionnels*

  • Ask clinician for vendor forms and device authorizations. 
  • Keep receipts and approvals. 

  Ontario Disability Support Program (ODSP)  

  Provides income and employment support for people with disabilities. 

  Ontario Disability Support Program | Programme ontarien de soutien aux personnes handicapées*

  • Apply early; prepare medical and financial documentation. 
  • Discuss impacts on RDSP/Henson Trust with a planner or lawyer. 
  • Explore employment supports when appropriate. 

  Disability Tax Credit (DTC)

  Federal tax credit for people with disabilities or their caregivers. 

  Disability tax credit (DTC) | Crédit d’impôt pour personnes handicapées (CIPH)*

  • Speak with a physician about Form T2201 completion. 
  • Consider DTC eligibility when opening an RDSP. 

  Registered Disability Savings Plan (RDSP)

  Long-term savings plan for people with disabilities. 

  What is a registered disability savings plan (RDSP) | Qu’est-ce qu’un régime enregistré d’épargne-invalidité (REEI)*

  • Confirm DTC eligibility first. 
  • Ask about grants/bonds and approved institutions. 

  Registered Education Savings Plan (RESP)

  Tax-sheltered education savings account. 

  Registered Education Savings Plan (RESP) | Régime enregistré d’épargne-études (REEE)*

  • Coordinate RESP with RDSP considerations if relevant. 
  • Check disability-related education supports. 

  Canada Disability Benefit (CDB)

  Federal benefit for working-age persons with disabilities. 

  About the Canada Disability Benefit program | À propos du programme de la Prestation canadienne pour les personnes handicapées*

  Understanding the Canada Disability Benefit and the Application Process 

  • Track federal updates and timelines. 
  • Review interactions with provincial supports. 

  Benefits Wayfinder 

  Tool to help people identify federal and provincial benefits. 

  Find Government Benefits in Canada | Trouvez des prestations gouvernementales au Canada* 

  • Search by province and personal situation. 
  • Use alongside ODSP/ADP/RDSP planning. 

  Ontario Public Guardian and Trustee (OPGT) 

  Supports adults who need help making financial or personal care decisions. 

  Ministry of the Attorney General  | Ministère du Procureur général* 

  The Henson Trust 

  A trust that protects assets for people with disabilities without affecting ODSP eligibility. 

  • Consult a lawyer for creation and coordination. 
  • Inform family and SDM of trustee details. 

  Planning Network 

  Supports people with a developmental disability and families to plan for the future; free online hub. Available in multiple languages. 

  P4P Planning Network | Ressources en français* 

  • Use webcasts to learn about RDSP, trusts, and benefits. 
  • Start early and revisit at major transitions. 
• 5. Respite & Day Programs (18+)

  Ottawa Foyers Partage 

  DSO-referred respite program on a timeshare model; one bed available for two-week periods a few times per year; staffed solely by Developmental Service Workers (DSWs). 

  https://www.ottawafoyerspartage.org/ 

  Rosemount R.E.C.C – Respite. Education. Community. Connection 

  Multipurpose facility in Ottawa providing expanded day-services, supported-living apartments and community-hub support for adults with special needs. 

  https://www.partnersinparenting.ca/about-4 

  Sonshine: RAYS Day Program 

  Camps and respite programs for children and adults with developmental or physical disabilities—accepting all medical needs. 

  https://sonshinefamilies.ca/services/r-a-y-s-day-program/ 

  The Ottawa Rotary Home 

  Not-for-profit provider supporting children, youth and adults with disabilities via supported living, community nursing, and respite stays. 

  https://rotaryhome.ca/ 

• 6. Advocacy & Peer Support

  Courageous Parents Network 

  Orients, equips and empowers families caring for a child with a serious medical condition. 

  https://courageousparentsnetwork.org/ 

  Transition to Adult Care Hub – Children’s Healthcare Canada 

  Helps youth with special health needs transition from pediatric to adult systems. 

  https://www.childrenshealthcarecanada.ca/en/networks-hubs/transition-to-adult-care-hub/ 

  Ontario Caregiver Organization 

  One-stop source of information, services and peer support for caregivers. 

  Ontario Caregiver | L’Organisme de soutien aux aidants naturels de l’Ontario* 

• 7. Quebec Services / Services du Québec

  CISSS de l’Outaouais – Intellectual Disability & Autism Spectrum Disorders (ID-ASD) 

  A regional Outaouais service offering assessment, support, respite, and coordination of services for people with intellectual disabilities and autism through a central access point.

  Un service régional de l’Outaouais offrant de l’évaluation, du soutien, du répit et la coordination des services pour les personnes ayant une déficience intellectuelle ou un trouble du spectre de l’autisme, par l’entremise d’un guichet d’accès central. 

  Déficience intellectuelle et troubles du spectre de l’autisme (DI, TSA) – CISSS de l’Outaouais* 

  • Contact the Guichet d’accès to request services and discuss available supports. 
  • Have diagnostic or medical documents ready. 
  • Ask about age-specific DI-TSA and socioprofessional programs. 
  • Communiquez avec le guichet d’accès pour faire une demande de services et discuter des soutiens offerts. 
  • Ayez les documents diagnostiques ou médicaux à portée de main. 
  • Informez-vous sur les programmes DI-TSA selon l’âge et les services socioprofessionnels. 

  My Future Belongs to Me – Youth Transition Fair (CISSS de l’Outaouais) 

  Transition fair connecting youth and families with health, education, employment, and community supports.

  Salon de transition mettant en lien les jeunes et leurs familles avec des services en santé, en éducation, en emploi et des ressources communautaires. 

  Mon avenir m’appartient – salon pour les jeunes en transition vers la vie adulte* 

  • Attend early to explore adult services and ask questions. 
  • Assistez tôt afin d’explorer les services pour adultes et de poser vos questions. 

  Office des personnes handicapées du Québec (OPHQ) 

  Provincial organization supporting inclusion, services, and financial programs for persons with disabilities.

  Organisme provincial qui soutient l’inclusion, l’accès aux services et les programmes d’aide financière pour les personnes handicapées. 

  Accueil – Office des personnes handicapées du Québec* 

  • Contact OPHQ for guidance on adult services and financial supports. 
  • Communiquez avec l’OPHQ pour obtenir de l’information et de l’accompagnement concernant les services pour adultes et les aides financières. 

  Service Québec 

  Single access point for Quebec government services including income support and employment programs.

  Guichet d’accès unique aux services gouvernementaux du Québec, incluant le soutien du revenu et les programmes d’emploi. 

  Services Québec | Gouvernement du Québec* 

  • Use to apply for identification documents and benefits. 
  • Utilisez ce service pour faire une demande de documents d’identification et de prestations. 

  Programme de soutien aux proches aidants (PSPA) 

  Provides psychosocial support, respite, and guidance to caregivers of individuals with complex needs.

  Offre du soutien psychosocial, du répit et de l’accompagnement aux proches aidants de personnes ayant des besoins complexes. 

  Caregiver | Government of Quebec* 

  • Ask CLSC about caregiver eligibility and respite options. 
  • Informez-vous auprès du CLSC sur l’admissibilité comme proche aidant et les options de répit. 

  Centre Philou (Respite) 

  A Quebec organization offering overnight respite stays and support for children and young adults (0–29) with multiple disabilities and their families.

  Un organisme québécois offrant des séjours de répit avec hébergement et du soutien aux enfants et jeunes adultes (0–29 ans) ayant des déficiences multiples et à leurs familles. 

  Centre Philou* 

  • Contact Centre Philou to ask about admission criteria and waitlist. 
  • Prepare medical and care info before applying. 
  • Communiquez avec le Centre Philou pour connaître les critères d’admission et les listes d’attente. 
  • Préparez les informations médicales et de soins avant de faire une demande. 

  Le Phare – Enfants et Familles 

  A Québec pediatric palliative care organization offering free respite, family support, symptom management, and bereavement services.

  Un organisme québécois de soins palliatifs pédiatriques offrant gratuitement du répit, du soutien aux familles, la gestion des symptômes et du soutien au deuil. 

  Le Phare, Enfants et Familles* 

  • Check eligibility criteria (child must meet pediatric palliative care criteria). 
  • Reach out for volunteer in-home respite or respite stays. 
  • Vérifiez les critères d’admissibilité. 
  • Informez-vous sur le répit à domicile offert par des bénévoles ou les séjours de répit. 

  Centre de Ressourcement pour la Famille de l’Outaouais (CRFO) 

  A non-profit Outaouais organization offering family respite stays in a nature-based setting.

  Un organisme à but non lucratif de l’Outaouais offrant des séjours de répit familial en milieu naturel. 

  Répit | Centre de Ressourcement pour la Famille de l’Outaouais* 

  • Call or email to ask about dates available for family respite stays. 
  • Inquire about age groups served and what the stay includes. 
  • Communiquez par téléphone ou par courriel pour connaître les dates disponibles pour les séjours de répit familial. 
  • Informez-vous sur les groupes d’âge desservis et le contenu du séjour. 

  Association Répit Communautaire (ARC) 

  A Gatineau community organization providing family respite services at a dedicated respite house.

  Un organisme communautaire de Gatineau offrant des services de répit familial dans une maison de répit dédiée. 

  Visio présentation | organisme-arc* 

  • Contact ARC to reserve a respite session (calendar, schedule, costs). 
  • Ask who the services are for (age, support needs). 
  • Communiquez avec l’ARC pour réserver une période de répit (calendrier, horaires, coûts). 
  • Renseignez-vous sur les personnes admissibles (âge, besoins de soutien). 
• 8. Caregiver Transition Checklist

  CCKO-Youth-Transition-Caregiver_Youth-Checklist_-Final_Feb222022-Fillable.pdf 

  • Start planning before age 18—begin discussions with care team and school. 
  • Gather medical summaries, equipment lists, and communication preferences. 
  • Confirm eligibility and apply for adult supports. 
  • Clarify decision-making and document plans. 
  • Line up a primary care provider and community services. 
  • Explore respite and day programs. 
  • Connect with peer support and advocacy groups.