>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, because those are the only children being moved to waiver.
>Now, can anyone tell me how is a family like ours is supposed to
>Sick solution: Disabled kids pay for fraud
> fgrimm@MiamiHerald.com
>Someone had to be punished for the agency's wasteful and arrogant ways.
>Money, by the millions, disappeared into a bureaucratic black hole. The
>current deficit of $105 million is expected to be followed by a $155
>million shortfall next fiscal year. And no one running Florida's Agency for
>Persons with Disabilities could quite explain why.
>The agency culture was about as open as the old East Germany. John Hall,
>executive director of the Florida ARC (Association for Retarded Citizens)
>said his advocacy group had to sue before APD relinquished a death grip on
>public information.
>The Legislature had demanded that APD adopt some modern managed care and
>accounting practices. To no avail.
>It was all too much. Waste. Lousy management. Inexplicable accounting.
>Snooty attitude.
>Someone had to pay. And the Florida Legislature has decided just who.
>Lawmakers took their frustrations out on Floridians with Down syndrome,
>with autism, with spina bifida, with cerebral palsy, and other
>disabilities. Someone has to pay for the sins of the APD.
>The 16 percent cut in appropriations will mean some special punishment for
>the parents of disabled children who depend on money funneled through the
>agency to fund home healthcare services. ''If you have 10 hours of home
>care cut to five, that means parents working eight-hour jobs will have to
>quit their jobs and stay home and take care of their kids,'' said Michael
>Messer, president of ARC's South Florida chapter.
>''It's just not right,'' he said Monday evening. Not that anyone in
>Tallahassee was listening.
>It's too early to be precise about how much the budget cuts will affect
>those now getting home services, but it's a near-certainty that the
>disabled Floridians on the waiting list for help are out of luck. Some
>15,000 are now on the list. The cuts, of course, will coincide with an
>increase in the ever-growing number of disabled folks in need of the
>services. The waiting list will only grow more formidable.
>But someone has to be punished.
>The logic behind the cuts in the APD's budget seems all the more mysterious
>considering that for every 45 cents the state spends on care for these
>disabled folks, the federal government pitches in another 55 cents. ''It's
>like every dollar we don't spend, we lose another dollar,'' said Messer,
>his voice wavering between bewilderment and anger. The home care system
>itself saves the state money by eliminating the very expensive alternative
>of housing the disabled in state institutions.
>Gov. Charlie Crist inherited the APD mess from Jeb Bush, who severed the
>agency from the Department of Children and Families three years ago and
>created an organization with a lean, mean, minimalist bureaucracy that
>would pay private contractors to provide most of the home services. But the
>APD staff proved far too lean to manage a $700 million budget. It
>hemorrhaged money.
>Crist told reporters, ``My heart goes out to the disabled and the most
>vulnerable among us. I want to support those who need the help, but I don't
>want to support fraud.''
>No one wants to support fraud. But the crackdown on APD coming out of
>Tallahassee doesn't target fraudulent or incompetent or arrogant
>Instead, kids with profound disabilities and wretched hardships will feel
>the wrath. But, hey, someone has to pay.

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