Tomorrow, I return to the Capitol for very
personal reasons. I didn’t get involved last session when they were discussing
CFCO. I mean I did make some statement on Facebook but, like all the legislators
were reading my Facebook- plus I have said if you feel strongly about something
send an email or pick up the phone or get involved. DO SOMETHING. So tomorrow,
I am going to the capitol with my friend Ruth to take a stand for my family. I
wanted to share with you so that if you feel so inclined you could email or
tell your legislators to please vote yes. I think anytime you are going to
share your story- while it’s important to have some rawness – you should also
be prepared. So I am sharing with my blogging community.
We are on the infamous waiver
waiting list we are #1230 (I think). We have been on the waitlist since 2008-
(yes, it predates me meeting my family-if you haven't read my blog on our adoption click here). I think I will call tomorrow and ask
so I can tell everyone our exact #. I am sassy like that. Anyways, to all my friends
who have no idea what the hell I am talking about: Community First Choice Option (CFCO) would help
thousands (approximately 3,000) of people (including my Lauren) with
disabilities (like autism) in Arkansas access home & community-based supports.
Here is what I found online (You can click here to read more): The Affordable Care Act establishes Community First Choice (CFC) under Section 1915(k) of the Social Security Act
as a new Medicaid state plan option that allows states to provide statewide
home and community-based attendant services and supports to individuals who
would otherwise require an institutional level of care. CFCO is an opportunity
for Arkansas to take advantage of enhanced federal funding for community-based
services for the elderly and people with disabilities. It will allow them
to receive the services they need to stay in their own homes, rather than be
required to go to an institution or nursing home.
I’m going to make this real for you right now: Our family
could no longer take care of Maddie so we had to the heart wrenching decision
to place her in a nursing home. If we would have had the Community First Option
we would have care in our home to help with Maddie. But, we didn’t and God has
literally carried us through this process. My husband and I are blessed to work
somewhere that supports us taking care of our kids. I had to take a lot of time
off work to care for my kids. Most folks are not that lucky. Honestly if Maddie
was home- I would have had to stay home. My job allows me to work around “Lauren’s”
schedule in the summer- again we have very limited options for summer care. We
do A-Camp from 8:30-11:30 in the summer 4 days a week. So, we leave Cabot at
7:50 arrive at Camp Aldersgate around 8:30 then I go to work in NLR till 11
then I drive back to pick up Lauren. Yeah, I am lucky my job allows me to be
flexible. I also know that I am limited on jobs that would be that flexible. My
husband leaves early each day so he can be home to get Lauren off the bus at 3:30.
There is barely enough options/funding to provide afterschool care for all the "regular" children much less for
a child as a severe as Lauren. I know I have rambled about a very small piece of why
Community First Choice is important to us- thank you for listening. I won’t share our struggles with
insurance for Lauren to receive speech therapy, have I mention that she is
nonverbal? There are number of reasons
how CFC would provide a better life for families like ours.
John and I do “fear” of what life for Lauren will look like as
adult. It’s going to be different and I hope people still care about her. I
have the same hope that my friends and family will join us in supporting CFC.
If the church people truly wants to serve the “least of
these” – whom Jesus urged the Church to make a priority, are they not the
disabled or special needs too?
Thanks for reading and becoming more educated on a topic that the Bensen family is passionate about- we are all about making a difference in the lives of all children.
