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Practical Insights for Busy Caregivers

Children with special needs who age out of the system

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June 18, 2018, by Paul Cavanagh, caregiverexchange.ca

In May, CBC’s The National produced a 9-minute video called Caring for Tor: An intimate look at the life of a young caregiver. It focuses on Stephane Alexis, a 24-year old man, who has put his goals and aspirations on hold to help his parents care for his younger brother Torence, who has cerebral palsy. The video paints a sensitive portrait of what happens to families when a child with special needs “ages out” of the system. It also highlights the difficult position in which Stephane finds himself as a young caregiver.
 
The issue of “aging out” of the system also recently received attention on CBC Radio’s White Coat Black Art. In a podcast entitled Cake and Balloons and Goodbye: Gilly’s Story, show host Dr. Brian Goldman spends a day with Gilly, a teen with autism and developmental delay. Gilly is on the cusp of aging out of the programs that support her, and her parents are struggling to figure out how the family will manage when that happens. The radio program also hosted a town hall meeting on the issue. 
 
In Ontario, dedicated service planning coordinators are available to connect children and youth with multiple and/or complex special needs and their familiesto the multiple services they need (across sectors), as early as possible, and monitor their needs and progress through a single coordinated service plan. The Ontario Ministry of Children and Youth Services website provides links to agencies responsible for coordinating services in different parts of the province.
 
Types of services available include the following:
 
  • Child care and schools
  • Children and youth mental health
  • Community support resources, employment, skills and training
  • Cultural services
  • Developmental services
  • Diagnosis and exceptionalities
  • Entertainment, recreation and sports
  • Funding, financial and housing supports
  • Health, therapy, medical equipment and travel
  • Indigenous services
  • Parents, caregivers, peer and respite supports
  • Youth services
 
(Thehealthline.ca recently helped to develop a Special Needs Strategy website for Elgin, Huron, London, Middlesex, Oxford, and Perth that helps families find these services more easily, as well as other relevant information.)
 
Unfortunately, the same level of support isn’t available in the adult system. This puts added stress on many families who are forced to pick up the slack. Some describe the experience of aging out of the children and youth system as “falling off a cliff.”