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bjbjD When Aaron was a baby for his first 3 years, there was no financial mechanism
for him to be cared for at home. And so our health insurance would pay 80% of his care
costs but since his medical bills were about ten thousand dollars a month at that time
we didn t have any way to pay those bills. And you know we could either well, I shouldn
t say that what we had to do in Minnesota We could either place Aaron in a foster home
and his bills would be covered or we could live at a poverty level and meet the federal
poverty standard and keep him at home. So that s what we did. Doug worked at a grocery
store and I stayed home with the kids and if we earned less than twenty five hundred
dollars a month gross we could qualify for medical assistance for Aaron. And so we decided
to do that because that was the only option and it was really horrible because we weren
t used to the little things you have to do to stay on medical assistance like after the
1st Christmas, the financial worker said well what did you get for Christmas and we said
well we got this and that and then grandpa sent us a check and this and that and she
s like, well write that down because we re gonna have to subtract, or add that to your
income this month. So that month we didn t get his financial assistance because we had
to put the Christmas presents on the list of income. And it was just this carefulm careful
was of life because when your kid is sick and you have to go to the hospital for say
five days and you have to pay for parking and lodging and meals, you can t do that when
your whole income is already earmarked for (train noise). When your whole income is already
earmarked for your rent and your phone bill and your heating bill, then you re stuck.
And at that time Minnesota had an option to take on TAFRA which would be a medical assistance
program based on a child s disability rather than the parents income. And so I did my first
advocacy work by going to the capital and just telling our story about how we had to
keep our income at poverty level in order to keep Aaron at home and what a difference
TAFRA would make. And surprisingly, even though the federal government subsidized TAFRA in
the states that chose it, I think there was only 8 states that actually chose to take
TAFRA and maybe 10 yrs later I met some parents of kids with disabilities whose states had
not taken the TAFRA option and they still were living at poverty standard to keep their
kids at home so I m very grateful that Minnesota decided to do that. urn:schemas-microsoft-com:office:smarttags
State urn:schemas-microsoft-com:office:smarttags place It was called Heritage House Owner Normal
Owner Microsoft Office Word Microsoft, Inc It was called Heritage House Title Microsoft
Office Word Document MSWordDoc Word.Document.8