“Tamir is a proud and caring team of participants, families, volunteers and staff dedicated to assisting people with developmental and other disabilities live with dignity and respect through opportunities for personal growth and community involvement.”
Ben (not his real name) is a 20-year-old Jewish young man with autism. He is full of life, very affectionate and loves being in on the action. Ben’s charm is irresistible and his attachment to Jewish ritual and activity is very strong. He looks forward to Shabbat and loves to reads his Passover and Chanukah books all year long. He likes associated crafts and music. Two highlights he looks forward to each year are singing “Dayenu” at Passover and lighting the candles at Chanukah. At last year’s Tamir Chanukah celebration, he proudly led the Tamir Neshama Choir in the singing of “O Canada.”
Ben has a rare seizure disorder that has been classified as a catastrophic condition by Health Canada. He needs to be monitored for seizures 24/7. There is a strong likelihood of potentially life threatening seizure activity when he is ill. Ben needs help with most activities of daily living and may suffer behavioural outbursts as a result of frustration.
Ben’s parents are worn out from the constant demands of his daily care, the relentless monitoring of his health and the support required with respect to his behavioural challenges. While Tamir provides outreach services to Ben and his parents, it is not enough. Ben requires more care, and his parents are losing their capacity to cope. They are at the breaking point.
Recently, there have been several reports and discussions on how the Ontario government provides residential support to developmentally disabled individuals. In August, the Ombudsman of Ontario issued a report, “Nowhere to turn,” which was an investigation into responses to situations of crisis involving adults with developmental disabilities. The Ombudsman issued 60 recommendations to help prevent and reduce the incidence of crisis and to develop capacity to respond more appropriately and cost effectively to people in urgent situations – including the need for housing and support.
In November, the “Ontario Today” program on CBC radio had a call-in show on the topic of “Housing for Adults with Developmental Disabilities.” The program discussed the extremely long waiting times for services and the lack of suitable housing options for this population. The lines were jammed with calls from families telling their stories, each one more compelling and heart-breaking than the next.
The government faces significant pressure to respond to the critical needs of these families and it is incumbent upon organizations such as Tamir, and our community, to work with government to find solutions.
We need to partner with a variety of stakeholders, both public and private, to create new affordable housing and support opportunities for individuals and families in desperate need. We need collaborative service models to provide efficient, cost-effective services, including more respite options for families, and to create a variety of housing and support options, particularly for individuals who are aging and others such as Ben with complex care needs.
Tamir’s Chanukah party will be held this year at Kehillat Beth Israel on Thursday, December 22 at 6 pm. Ben is excited with anticipation, and we welcome each and every one of you to join us.
As we celebrate this joyous occasion, may the lights of Chanukah shine brightly on Ben, his parents, and all families with people with developmental disabilities in need of our community’s assistance and support.