{"id":6,"date":"2019-02-14T19:34:04","date_gmt":"2019-02-14T19:34:04","guid":{"rendered":"http:\/\/project.journalism.ryerson.ca\/leftbehind\/?page_id=6"},"modified":"2019-07-05T17:56:54","modified_gmt":"2019-07-05T17:56:54","slug":"homepage","status":"publish","type":"page","link":"https:\/\/grad.journalism.torontomu.ca\/jordanagoldman\/","title":{"rendered":"The Waiting Game"},"content":{"rendered":"

[vc_row full_width=”stretch_row_content_no_spaces” css=”.vc_custom_1551813309798{margin-top: -70px !important;padding-top: -50px !important;}”][vc_column][rev_slider_vc alias=”Title”][\/vc_column][\/vc_row][vc_row el_id=”digital-divide”][vc_column][vc_column_text]Anita remembers the day her mother died like it was yesterday. Although it has been five years, the memory remains etched in her brain. With an unwavering tone, Anita tells her story.<\/p>\n

It was about 8 a.m. on a school day. Knowing that the bus would be there in 20 minutes, then-13-year-old felt anxious lying in bed, waiting for her aunt or nurse to help her get ready as they do every morning. Anita was born with\u00a0cerebral palsy<\/a>\u00a0affecting her legs, and sometimes her hands and speech, and requires 24-hour care. When her mother was diagnosed with cancer, her aunt uprooted her life in the Caribbean, leaving behind her children, to care for Anita.<\/p>\n

Finally, the bedroom door opened. She knew her mother was very sick, but hearing the words was like a stab to her gut.<\/p>\n

\u201cI just remember myself kind of like falling back on the bed and screaming a little bit,\u201d Anita says. \u201cI didn\u2019t really start crying until after the funeral because that\u2019s when my whole family came to my house, and I\u2019m thinking \u2018Okay, everyone else is here, but where\u2019s my mom?\u2019\u201d<\/p>\n

While Anita\u2019s aunt is willing to disrupt her life to provide full-time care for her, she often mentions that she would like to return to be with her family. Anita\u2019s father is in a Toronto rehab for alcohol addiction.<\/p>\n

On the second floor at the Bloor location of <\/span>Safehaven Project for Community Living<\/span><\/a>, Anita looks at home \u2014 confident, sometimes shy \u2014 but with a presence that says: notice me. Perhaps her outgoing personality stems from the care she has received for about six years at Safehaven, a recreational and leisure program that provides a break for children with disabilities and their families. While Safehaven has given Anita and her aunt time to relax, it has also given Anita a sense of belonging and community. <\/span><\/p>\n

\u201cI was kind of scared coming here at first, this is my first time being away from home,\u201d\u00a0Anita remembers. Now, she considers it a gift.<\/p>\n

\u201cMeeting the other kids was like a blessing because I\u2019ve never really had a perspective on different disability before,\u201d Anita says. \u201cThese people have different machines and they operate different and it\u2019s kind of cool to watch because it gives me a perspective on how other people live.\u201d<\/p>\n

This will all end in a few months.<\/p>\n

At age 18, Anita is already well into her transition to the adult system. This year, when she turns 19, she will not be able to seek respite at Safehaven anymore. Best case scenario would be if she were already on a waitlist for adult respite, which often is into the thousands. However, Anita is not well-informed about her transition, and so does not know whether she is on a waitlist yet.<\/p>\n

There are no respite services specifically for young adults. Instead she will be lumped together with individuals of all ages including geriatric patients. She will not be able to continue seeing her lifelong doctors at The Hospital for Sick Children (SickKids), and funding for life\u2019s necessities will drastically decrease.<\/p>\n

Becoming an adult for many means voting, legal drinking, and independence. For individuals like Anita and her family, the onset of adulthood is a point of crisis where families are thrust into a new, confusing system with long waitlists, lack of specialty-trained and available healthcare providers, and pleas for funding.[\/vc_column_text][\/vc_column][\/vc_row][vc_row][vc_column][vc_custom_heading text=”The System” use_theme_fonts=”yes”][\/vc_column][\/vc_row][vc_row full_width=”stretch_row”][vc_column][vc_column_text]About 6.2 million Canadian have one or more disabilities, including developmental as well as physical challenges,\u00a0according to data from Statistics Canada, 2017. More than 540,000 youths between the ages of 15 and 24 have one or more disabilities,\u00a0with\u00a0cerebral palsy<\/a>\u00a0being the most common physical disability among children. One out of every 400 individuals in Canada have been diagnosed with\u00a0cerebral palsy<\/a>.<\/p>\n

However, there is an absence of data on changes in life expectancy or specific numbers tracking each disability. Statistics Canada conducts the \u201cCanadian Survey on Disabilities<\/a>\u201d every five years, but it does not touch on life expectancy, or include children younger than 15 years.<\/p>\n

Despite a lack of numbers, those who provide support and care for children with disabilities are concerned that, thanks to medical advancements, more children are aging into early adulthood and beyond. As it stands now, systems in place for disabled adults are not at all ready to adequately support this new and increasing population who may need physical, cognitive or social supports \u2014 or a range of these.<\/p>\n

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