My name is Jacqui Hawkins and I am writing to you as a parent and an advocate for
the developmentally disabled. My family moved to the southwest Florida area in
November of 2004, we moved here from New York, where we were spoiled. The services
that were available to our family were numerous and it was a huge benefit to our
family. We are surely going through withdrawal now. Let me start from the beginning.
My husband and I had tried to do the right thing by his child from a previous relationship,
but mom had a number of issues and even though my husband showed that he was committed,
the courts had a hard time ruling against the mother. Well, mom made it very difficult
for us to be there for her and the child, we backed out of the child's life. Robert
was then 5 years old and while my husband felt as though he had a relationship with
the child, the child was "profoundly" retarded and likely wouldn't have
too much of reaction if my husband didn't see him any longer. In April 2003, we
were notified that the child was in foster care, after being removed from his mother's
custody for severe neglect and possible abuse. (Mom kept the child in a closet
so that she could sleep). We fought the Department of Social Services in New York
for months before finally winning custody of Robert in October of 2003. When Robert
arrived in our home he was 10 years old and as DSS stated, "profoundly"
retarded. Robert wouldn't look at anyone, preferring to participate in self stimulatory
and self injurious behaviors. Robert was on pudding consistency foods (baby food)
and needed to be fed. He couldn't even hold his own cup. Robert also did not walk.
We had been told that this was Robert, he'd always be like this and DSS hoped we
were ready. We refused to accept that. Robert now has real relationships within
our family, not only looking at us, but reaching out for us. He also has real preferences
as to who he relates with. Robert also can eat regular table food with Pediasure
supplements. Robert has difficulty loading his spoon, but can bring the spoon to
his mouth and will hand us the spoon if we are too slow in loading it for him.
He not only drinks from a cup, but lifts it to his mouth and place it back on the
table when through. While he is still very self-stimulatory and self-injurious,
he does walk. An accomplishment that in itself we weren't sure would EVER happen.
When we obtained custody of Robert, I wasn't sure how it would fit into our lifestyle.
My husband and I both worked full time outside the home, I had an additional part
time job and we had 4 other children. (3 children are from my previous marriage
and 1 child, my husband and I had together). At that time, I worked for East End
Disability Associates, Inc in Riverhead, NY as a Program Manager of In-Home Services.
There I was in charge of the residential habilitation program, which served 52 children
and adults with developmental disabilities. I also worked part time for Developmental
Disabilities Institute in the children's residential program. There I worked hands-on
with 11 children with mainly mental retardation and autism/autistic tendencies.
Both employers were very flexible with me so that I could provide the best care
that I could for my stepson. I immediately was in touch with the Office of Mental
Retardation and Developmental Disabilities in NY (OMRDD NYS), Robert was approved
for Medicaid Waiver by 1/15/04. His service coordinator worked for EEDA as well,
so that was very beneficial for both Robert and myself. Robert attended an After
School Therapeutic Recreation Program, Saturday Respite and Overnight Respite.
These services helped us immensely. It allowed me some alone time to regroup, mind
you, I lived and breathed "retarded" folks, it also allowed me and my
husband to provide some time with our other children. It also provided a huge help
in purchasing diapers for Robert. Diapers for a large child are quite expensive.
While we enjoyed what we did in NY and the money that we were making, it just wasn't
enough. We both worked so hard to really enjoy the "fruits" of our labor.
We decided to relocate to Florida where my grandparents and my aunt lived. My grandmother
had alzeihmer's disease and my grandfather and aunt were burning out. My husband
and I looked at the opportunity as a multi faceted benefit. We could help them
with her and they could help us by being there for our children. We had no idea
how difficult it would be to obtain services for Robert. We do make alot less money
here, but I am able to be home a little more, especially since as a new employee
of any company, they'd be alot less understanding and flexible with our needs.
I now work overnight shifts at Shellpoint Retirement Community. We are at our wits
end. We were able to obtain support coordination for Robert, but we have virtually
no contact with her. I've yet to receive his "plan" and I had to explain
to her what HCBS waiver was. Anyway, we have NO supports for Robert and it has
become increasingly more difficult to care for him. He still requires alot of physical
assistance to accomplish any task and constant supervision. We can't even put him
to sleep in his crib anymore because he would wake up with marks or bruises and
we didn't know where they were coming from. We now believe that he is trying to
climb out of his crib. So, he sleeps in a chair in the living room, (my husband
and I do not currently have a bedroom, so that is where we sleep). He is strapped
into the chair, so we know that he can't move about and therefore can't injure himself.
My children are overwhelmed, there are so many things in their new neighborhood
and beyond that they want to explore, but it is such hard work to take Robert with
us, that they haven't been anywhere. Robert not only requires alot of lifting to
get in and out of the car, assistance with dining, he also doesn't like crowds.
My husband and I have accepted that we won't make NY salaries in Florida, but in
the same instance, Robert still needs diapers, etc. that we just can't afford.
I was told that there is a wait list for services like nothing I could imagine,
but yet there was a surplus of money. Truthfully, I am afraid that though we believed
we were doing the right thing by taking this child out of NYS' care, we made a very
wrong decision for our family. We simply do not have enough resources here in Florida
to allow us to continue. We can not move back to NY, there is no way to afford
the cost of living there, so we are stuck. If we don't find adequate resources
here, I am afraid that we will have to seek residential treatment for Robert. It
is a shame because that will cost more money, when we are able to provide Robert
what he needs in our home with appropriate services. But you want to know what
the worst part is, the level of professionalism in Florida, for lack of a better
term, really "sucks". I can't get ANYONE to return my calls and when
I do speak with someone, I'm told, "Someone will get back to you next week."
NEXT WEEK?!?!?!? When I worked for EEDA, I was not allowed to let more than 24
hours to pass without returning a phone call, if I did, I faced disciplinary action.
If a family needed assistance and I couldn't help, I referred them to someone who
could and then followed up myself, to make sure that the person I referred them
to did in fact, assist them. Something is very wrong here and families need help,
NOW! I don't know what else could be done, but I know we can't go on like this
PS-the kicker is, my 2 children from a previous marriage receive medicaid because
my husband is not their father, but Robert who is severely handicapped, can not.
(Robert is diagnosed with Down Syndrome, Autism, a seizure disorder, chronic congestion,
chronic constipation, reflux, microcephaly, failure to thrive, orthopedic problems,
he's nonverbal, and doesn't sleep more than 2-3 hours at a time.)