Thread by @MrsMarambio

On Thursday I was told this was a stunt. Let me make this clear. This is not a stunt. This is desperation. I have no other option. I don’t want to be here. We are going to have this conversation about goddamn systemic barriers. This is urgent. This is a crisis. #onpoli /1

We have tried to do it privately, advocating as politicians say you should “just reach out. We are here to help”. We don’t need an iPad. We don’t need sensory toys. We need access to healthcare and community services. One size does not fit all. /2

Programs like the OAP are extensions of healthcare. They are programs that are doorways to other healthcare (like surgery and emergency care), education, daycare, before and after school programs, sports, all the things a family takes for granted./3

Families would not be screaming from the rooftops & lawn at Queen’s Park if we had equitable access to the services, healthcare, childcare and summer camps and other things that Ontarians and Canadians take for granted that make being able to contribute to society possible. /4

Let me summarize where I have asked for help. Not because my child is hard work. Because we need more help than my skills as a parent are capable of. I have done everything this government and medical and community professionals expect of parents. /5

This thread I wrote in Jan 2020 explains it well. Keep in mind wait lists aren’t 24 + mths anymore. Now 50,000 families wait. Up fm 23,000. Don’t tell a family or an individual “all you have to do is ask for help”. It is insulting & absolute BS. /6

https://mobile.twitter.com/MrsMarambio/status/1223012835657162758

Let’s summarize where I have asked for help.
Sick Kids- Developmental Pediatrician
Halton Region - Developmental Consultant
Sick Kids -Psychologist (or Psych?)
Sick Kids - Developmental Pediatrician
Family Doctor
Family Pediatrician
Erin Oak Kids -SLP
Sick Kids -clinic team /7

Sick Kids - feeding clinic
McMaster - feeding clinic
Private OT
Every pediatrician at Sick Kids for annual check up.
Employer Insurance Program
Ontario ACSD. Denied.
SSAH. Applied 2018. Received 2020. Can’t use for healthcare, services, therapy.
OHIP+ /8

Ministry of Health re no OHIP+
Trillium Drug Program.
ASD diagnosis being looked at. I have medical emergency and almost die from sepsis.
Family takes two years to recover from trauma.
Trauma psychologist - Reach Out Centre for Kids. Name goes on OAP waitlist July 2017. /9

Sick Kids- clinic team
Social Worker - CAS Halton
Sick Kids- Pediatrician
St. Mike’s - Dietician & Pediatrician
Erin Oak Kids - intake follow up.
Kerry’s Place - consultant
Autism Ontario - info line
Family Pediatrician
Ontario Ombudsman’s Office/10

Provincial Progressive Conservative MPP x5 or 6.
Minister Todd Smith - was told in hallway at Queen’s Park “I hope you get a cheque”.
Parliamentary Assistant for MCCSS x a lot. & junior staffers
The other Parliamentary Assistant /11

Federal MP
Town of Oakville Council. Motion passed.
Town Mayor and councillor
Halton Regional Council. Motion passed.
Halton Support Services
School
Holland Bloorview
Sick Kids - surgeon
Former Ontario Child Advocate
Ministry of Children, Community,Social Services /12

Sick Kids- Social worker
Intake - Reach Out Center for Kids
Ministry of Children, Community, Social Services x 5
Sick Kids - compliance and risk assessment team. Request for letter from doctor denied.
Ministry of Children, Community, Social Services /13

Interrupting my thread. My mom is calling to check-in.
❤️

Halton Support Services -Service Coordinator
Sick Kids-Social Worker
Ministry of Children, Community, Social Services
Ministry of Children, Community, Social Services
Sick Kids-Manager, patient care
When you see an org listed multiple times that’s us going back & forth/14

Ministry of Children, Community, Social Services
Ministry of Children, Community, Social Services
Erin Oak Kids - Supervisor
Erin Oak Kids - OT
Clinic team - Sick Kids
Sick Kids - Family legal Health program
Service Coordinator - HSS
Clinic staff - Sick Kids /15

Need to rest my fingers and eyes. Will come back to this list soon. I’m typing out an 8 page spreadsheet list of all the places I have advocated. So SOMEONE tell me HOW I am supposed to ask for help. What is the RIGHT way? /16

Someone brought me a hot breakfast. Further tweet thread interruption.

EOK- OT, assigned to school
EOK - Supervisor
OT
EOK-OT
HSS
HSS
Intake -EOK re if paperwork received
Paeds Team - Sick Kids
LHIN- Manager
Psychologist - ROCK
EOK- supervisor
Holland Bloorview - OT (out of catchment area)
Coordinator - Sick Kids
Doctor- Holland Bloorview /17

LHIN - OT
EOK- supervisor
EOK -OT
Nurse, service coordinator -Sick Kids
LHIN - OT
LHIN - OT
HSS
SLP - Sick Kids
Cold call Humber River Hospital
EOK, supervisor
EOK, supervisor
HSS
Service coordinator- Sick Kids
HSS
Nurse - Sick Kids
Service coordinator - Sick Kids
HSS /18

There are still 3.5 more single space pages on my spreadsheet. This is the asking for help. That’s all we do is talk. No help.
Still typing. Other than Erin Oak Kids (connected by MCCSS) all this is me. My advocacy. My cold calling. Hello advocacy fatigue.

What I haven’t included on this list is the mental, physical, emotional toll this has on a person.

I haven’t listed the weekends I have spent in bed fm the trauma of this experience. Giving my heart, head & mind a break from this dehumanizing experience. You say ask for help.

I have experienced near death. Saw the pearly gates and was saved by a critical care team (pre Covid). Thank you HCW’s for all that you do! That was easier than this. These systemic barriers.

My son is not hard work, fighting the system is hard work.

Oops forgot to number those last few.

Nurse-Sick Kids
Doctor-Holland Bloorview
EOK-Supervisor
Doctor-Holland Bloorview re study
Old family trauma psychologist x 3 for mental support
Nurse & coordinator - Sick Kids x 4
Dietician- St.Mike’s
HSS x 2
EOK- supervisor
/19

Family paediatrician x 2
Coordinator - Sick Kids
Family paediatrician
EOK - supervisor set meeting /20

EOK - supervisor. Meeting to confirm after three months of back and forth initiated by MCCSS our request for help is denied. I ask they help direct us and advocate elsewhere. Am told “that is outside our responsibility”./21

HSS - re being denied
Clinic team lead (doctor) - Sick Kids
Family Paediatrician
-After 7+ yrs nutritional formula covered. Next step, how do I recoup cost?
Coordinator- Sick Kids x 2
Doctor- Holland Bloorview re info needed. Still outside catchment area.
MCCSS
HSS x 2
/22

Clinic team lead -Sick Kids
Team doctor - Sick Kidsx 2
Old psychologist - pep talk and general venting
MCCSS
MCCSS
HSS
Nurse, Sick Kids
HSS x 6
Social worker, Sick Kids
*Case conference meeting including us and 7 orgs and individuals to strategize options.* June 2021 /23

Getting there. 1 page left.
HSS
Old family psychologist
Coordinator, Sick Kids
HSS
Coordinator,Sick Kids
Coordinate meeting re ACSD denial- Sick Kids
HSS X 2
Meeting re ACSD
HSS x2
MCCSS
MCCSS
HSS- coordinator has moved on,new coordinator assigned.
Coordinator,Sick Kids/24

HSS x 2
Completely forgot to list service resolution denial. That happened. Fun times.
You get the gist of it.
How else do I ask for help?
We are shuffled. Forgotten. Commiserated. Tell me “how it’s done.”/fin