Jan 21, 2022
Brenda Agnew is accompanied to today’s episode by Teresa, another warrior mom who Brenda met a number of years ago. Teresa is a mom to twins Jessica and Alex, who are now 18 years old. They discuss the particular phase when children with special needs transition to adulthood. Teresa shares how having more knowledge helped her in her role as a parent and an advocate for her children dealing with a complicated and confusing system.
Key Takeaways:
[4:43] Teresa talks about her twins, Jessica and Alex.
[8:23] There is a different time for every parent to make certain life choices.
[11:20] Full inclusion does not work for everybody.
[15:55] Special education needs students to help with transitioning to what will come after.
[17:16] Teresa’s children are in 13th grade.
[18:03] Teresa shares how her children transitioned to high school.
[22:38] Brenda talks about a case where transitioning failed.
[23:42] Teresa shares one of the best reasons she has been advocating for so long.
[25:47] ACSD (Assistance for Children with Severe Disabilities) flips to ODSP (Ontario Disability Support Program) as well as Special Services at Home flips to Passport Funding.
[29:51] Determining the level of disability is important for this transition.
[31:03] Brenda shares why she does not want a Psycho-Educational assessment done on her son at this point in his life.
[32:40] Teresa shares her experience of an 8hs assessment through the computer.
[34:20] Teresa talks about the exceptions.
[36:16] ODSP gives a maximum of $1100 a month.
[37:01] They do not cover therapy after 18 years old or 21 if they are still studying.
[40:27] If you manage to transition your child into adult care, is the adult support system the same as in a pediatric setting?
[43:16] Our healthcare system is reactive, everything preventive is out on the patient.
[46:29] Brenda talks about how she deals with her son’s gastrointestinal issues and her fears in regards to the help he will receive after turning 18 years old.
[50:35] Teresa will also become the caregiver for her mother.
[51:15] There is a 3-4 year waitlist for the DSO Passport Funding.
[58:06] Teresa would very much like to change the system while she is going through the process.
[1:01:52] Teresa and Brenda agree that the reality is that their children will do better at home than institutionalized.
Mentioned in this episode:
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