Tuesday, August 7, 2007

The Problems I've Experienced in Florida

I want to make everyone aware of the problems here in Florida for children
with disabilities. I am a stepparent of a child with profound disabilities.
Almost 4 years ago, my stepson was in foster care after having been removed
from his mother's custody for abuse and neglect. His mother also
"neglected" to notify the state of NY when they removed the child that while
his father did not have contact with the child for almost 10 years (HER
choice - the finest example of parental alienation), he DID pay child
support faithfully AND had a HUGE interest in being a part of the child's
life (yes, he did file petition after petition, but all mom got was a slap
on the wrist and empty threats, while dad was reminded that he was a
"scofflaw" because he had a suspended license due to unpaid traffic
tickets), so this child sat in the foster care system for over a year.
Somehow they were able to find him, not to tell him that his son was in
foster care and give him the opportunity to care for his child, but to
request $1500 a month in child support to keep him there. We immediately
began "the hunt" to retrieve his child............Child Protective Services
gave us a hard way to go. But in the end, his child came home with us. We
continued to live in NY for a little over a year ( we had lived in NY all
our lives) and we decided that in order to better provide for our family, we
needed to find a "more affordable" place to live. While in NY, this child
received medicaid waiver in less than 45 days, went to a therapeutic after
school program every day, had a Saturday respite program, overnight respite
once a month, automatic delivery of diapers, gloves and chux, all his
equipment needs were met without MUCH delay, brand new equipment. I guess
you could say that we had it "good" and in that aspect we did. However, I
worked 3 jobs at one time and my husband worked long hours at one. I didn't
have anytime to spend with my family, let alone "dates" with my husband, as
a result, we were fighting constantly and truthfully on the verge of
divorce. We decided to take our family to Florida, this was not an
uneducated decision, I looked into EVERYTHING, including the available
services for a child like our child. I contacted the local Department of
Children and Families and found out that yes, they did have medicaid waiver
and that yes, they did have services similiar to what we received in NY, I
even received a "provider listing"................the odd thing that I
noticed was that it was all "privatized", no real agencies to provide the
services, but private citizens who gave their "business" a name. I should
have been alerted immediately, but hey, as long as he had access to the
medicaid waiver, than I'd work to find the right providers for him. I
already knew that I wasn't going to be able to find employment similar to
the job I had in NY. I worked as a manager of residential habilitation
programs serving children and adults with developmental disabilities and
with "privatized" services, there wouldn't be a need for the job that I did,
but I always enjoyed being "hands on", I didn't need to be the manager, I
was okay with the idea of becoming a "privatized" provider of residential
habilitation. We moved to Florida in November 2004. Almost immediately, I
should have known that we were going to have problems, of the 5 employers
that offered my husband a job when we returned, none of them were willing to
hire him now that he was here. I also quickly realized that there weren't
ANY services for a child like ours, I called EVERYONE that I could to secure
SOMETHING, I was offered a few hours of respite on a Saturday, which I
jumped on, until that program disappeared, too. We met with our support
coordinator who was brand new and knew NOTHING about medicaid waiver, I
filled out her paperwork for her and told her what waiver was. She soon
disappeared too. Eventually, I was told that we had a wait list of over 5
YEARS for medicaid waiver...........despite filling out a crisis tool. I
had such anxiety and depression; for on one hand, I only needed to work one
job and my husband and I actually began to like each other again, I had more
time to spend with my children and more money in my pocket to do "little
things" with them, but on the other hand, I had a child with profound
disabilities that was no longer receiving ANY services, it wasn't just
medicaid waiver and the services that THEY provided, but health care in the
area where I live is severely lacking, which means that I travel to Tampa
and Miami to go to some of his specialist appointments, Both Tampa and
Miami are over 2 hours away. Schooling isn't any better, the child went
from OT, PT and Speech 2-3 times a week, to one hour a month for OT and PT
and 30 minutes of Speech each week. These services are severely lacking and
I'm told that our child's problems are "medical not educational", they
recommended outside therapy, we've been on the wait list for months. So
there, the level of frustration is high. And now, I read articles like the
one below........it describes the state's solution to a huge problem for the
APD. Less money means less services for the individual already on waiver,
which in turn means that my child will be on the waitlist alot longer than
originally thought. No access to diapers, new equipment (which is
desperately needed), and services. Diapers cost on average $75.00 a month
with shipping, equipment costs thousands of dollars and services are
available if I want to pay out of pocket for them ($8. an hour), This
doesn't include the cost of gas (which is OVER $3. a gallon in SW FL), to
get to and from the medical appointments hundreds of miles away. Never mind
that both my other child and I both see specialists on a regular basis, at
the cost of $45. per visit and our medication costs over $100 a month and
that is WITH insurance. Move, you say? With the amount of money that we
spend on the things I've mentioned (don't even get me started on the cost of
water, in a state SURROUNDED by it), we don't have money to get out of here.
Our new support coordinator's suggestion? Put the child in foster care....................

1 comment:

Waiver News said...

I'm so sorry about what you are going through.

From reading your post, it sounds like your child is still on the waiting list and has a GR coordinator.

You might be able to get some informaiton here---

That is where the support coordinators go for information, since it is lacking all around.