Florida Medicaid Waiver question

[SonicGuy]

Does anyone happen to live in Florida and know anything about the medicaid waiver programs?
I've been offered a new position in West Palm Beach area and am having difficulty getting information of the Florida programs. We have two DD who are both disabled and the programs we have here in Texas are "cadillac" quality programs. Any insight would be GREATLY appreciated!

 

[lucigo]

I hope someone else has a different answer for you but from what I have experienced, the med waiver is something you sign up for and then never hear from again. There is a 30 something year waiting list for services. Our children will all be grown before their turn comes up. The reason you get on the list is to show the state how many people need help, and in the hopes that someday more money will be given to the program. I have heard that they have emergency funds for things like car seats and it might be that people with low income qualify for more than the rest of us. I do know of one family receiving ABA through med waiver who qualified through some type of emergency funding.

 

[dclfun]

As the above poster mentioned, the wait list for services is long, with most people losing hope that they'll ever be accepted and move off the waiting list. Florida is one of the worst states for disabled people of any age- there just aren't any funds and our governor keeps cutting the few there are. Funds are only for children, so if you're an adult, there's ZERO assistance. Last year funding for people currently on the waiver program was cut, esp. for in-home care. Sorry, but moving to Florida isn't a good idea if you need assistance.---Kathy

 

[SueM in MN]

I don't know anything personally about services in Florida, but the things I have heard have are the same as has been posted already.
One of the things we were always concerned about when moving anywhere was what the services might be, including school services.
In addition to waiver programs, I have not heard anything good about school services for people with disabilities in Florida either.

PS - I am going to move this thread to the disABILITIES Community Board where it will be perfectly on topic.

 

[SonicGuy]

Yeah I understand. We felt frustrated with the 6 year wait when we moved to Texas. Our concern really is not for medicaid, as we have good insurance and at least where we live in Dallas none of the Doctors take it anyway. We are more concerned about the respite care that we are able to get that gives my wife some help with two disabled children at home - DD17 and DD4 (who is severly disabled) as well as the fact that we just had a new baby 3 weeks ago.

Trying to find information from anyone there has been like trying to call up the White House and ask about state secrets!

So if anyone knows anyone who gets respite care please chime in. It may be called different things in different states, but here in Texas it basically is a budget that allows us to hire someone to come in a few hours a day so as to give my wife a break - usually a nap! I wish politicians would wake up to the financial and emotional burden that is placed on parents with these special angels. 50 years ago they would just have gone and lived in a state home somewhere - at a cost 50 fold to what it would cost to help families take care of them in the comforts of their own homes. I feel so blessed that I have good insurance coverage and make a good income that I can do what I can, but I often wonder about those that don't!

 

[SueM in MN]

So if anyone knows anyone who gets respite care please chime in. It may be called different things in different states, but here in Texas it basically is a budget that allows us to hire someone to come in a few hours a day so as to give my wife a break - usually a nap!

In most states, that is also part of the waiver program.
In Minnesota, my DD is an adult, so she is qualified for Medicaid (at least in Minnesota) and does get Personal Care Attendant services covered. There are some waiver programs that cover things like respite care, but even in Minnesota, getting a place on the waiver programs means a long wait for positions to open up - it often means that a number of people have gone off of the waiver program, either by going into a nursing home or group home or people have gone off the waiver program by death.

 

[CPT Tripss]

You might want to visit hcbs.org and roam around there - you might come up with some solid info or contacts. Also, google for the state chapter of the specific disability advocacy group that applies to your situation.
I have done some waiver research and I must echo the comments of other posters. Florida's government website is not set up well for searching for real information - and the phone system is voicemail h***.
I also would say that waiiting lists in many states will real mess up continuity of care. when will sommeone sue the states and feds under the "portability" part of HIPPA.
Sadly, if you have good services in TX, you might be stuck.

 

[SonicGuy]

Thats really our quagmire. We moved to Texas 7 years ago from Idaho, where DD had medicaid waiver, no problem. We came to Texas with no idea it would be a 6 year wait, but we survived. We now have three kids - 2 disabled as I mentioned, and the third is too young to know (only 3 weeks old). I hate to become someone who puts their lives on hold for a government program. The job opportunity is a significant amount of money with amazing growth prospects. I just don't know how to find that balance. The more money will allow me to provide better for the girls when I'm not around some day - a thought I know we all think about. But I also know that work it is for my amazing wife. I don't want to end up having to put her into a home!

You know, you'd think that our kiddos and our families go through enough every day that we should not have to feel like we are stuck in one particular state and can't move to a better opportunity because our kids' benefits may not transfer or be as good.

 

[Schmeck]

Sadly, that's become the reality for so many families, with or without disabled children - moving out of one state means losing a lot of benefits. I know if my husband accepts a job within the same company that he works for, but in a different state, we lose a lot of our health care coverage, as it was written into his contract that way.

Another problem is that the costs of health care have increased so much that the states are actually going into so much debt to cover services - at least here in MA we are. Don't move to MA if you want top notch services, that's for sure! We're down to the bare bones, and pretty soon the bones will have some chips in them. Taxpayers just can't handle any more. We're called Taxachusetts for a reason, LOL!

Could you hire a part time helper for your wife with your increase in salary, until services kick in?

 

[Forevryoung]

Could you hire a part time helper for your wife with your increase in salary, until services kick in?

I was going to suggest something similar- as a college student I know I was willing to help out (and had/have a lot of experience with special needs kids) for a few hours a week when asked. I was paid around $10 an hour and I worked 2 times a week for 2 hours after school- just enough to help get homework done, bath time over with, dinner was able to be started if not completed (and ready to be put on the table when I left...)

Knowing that I was going to be there from 4-6pm Tuesdays and Thursdays was a HUGE help.

Check your local college's special education and related services departments (speech therapy, occupational therapy...) see if they know anyone who would be able to help out

 

[0hmyheck]

I placed an ad at the local college and have several qualified respondents. If you can afford to pay private just to get good help, it is truly worth it.

Good luck

 

[LauraVV]

Does anyone happen to live in Florida and know anything about the medicaid waiver programs?
I've been offered a new position in West Palm Beach area and am having difficulty getting information of the Florida programs.

You can find information about medicaid programs by googling "home community medicaid waiver." I found the following by adding FL to the search

http://www.doh.state.fl.us/Workforce/BrainSC/Medicaid/medicaidhome.html

 

[Ms_Butterfly]

Check on the county health insurance. I don't know what it covers and all, but certainly lots of doc appointments (I know somebody on it who doesn't have a dime and she goes to a lot of doc appointments, several each month at least).

 

[SonicGuy]

Thanks for all of the great ideas. Sometimes I think it just helps to vent. I can afford, and will most likely have to, pay OOP for someone to help my wife. It's just really nice here because we get 45 hours per week for one DD and 36 hours per week for the other. They don't pay the best - one program pays $8.50 per hour and the other $10.50 - but we are able to hire family and friends and can work completely around everyone's needs. It really is great. It is also nice after years and years and years of paying in LOTS of taxes to finally be able to get some of it back out. I work very hard to support the needs of my special kiddos (as we all do). It would just be nice if those that appropriate our tax dollars would understand that.

I hate to even think about not taking the opportunity because of a service program, but like it or not, it has to factor in. I also keep thinking that when we got to Texas everyone told us there were no programs but when we finally got on, they've been great.

 

[Talking Hands]

You will be able to put your special needs kids in school when you move here. Bring a copy of your current IEP as that has to be followed until one is put in place. Yes there are teachers here that have been caught sbusing kids but for the most part the ESE teachers I have worked with have been terrific. (I'm a sub)
There has been only one I have had problems with (gaves me the creeps) and she finally retired. She didn't like having paras in her classroom because she was mistreating the kids. Principal realized and gave her 2 paras so one was always in the room with her so she was constantly under observation.

 

[RACHELSMOM1]

We have our daughter on the med waiver wait list, which is 72 months. The guidelines are so narrow, she had to apply twice to get on the list. Even with a disability and a dx of down syndrome, that does not qualify her. We had to have IQ tests done. I was so thankful when we finally got our letter stating she was on the wait list. Now we just wait, and wait, and wait.....

 

[Ali]

If the disability is an autism diagnosis or a dual sensory impairment contact the CARD center. Google CARD center and see what you find. It is the center for autism and related disabilities. There are "case workers" who will help you navigate the system, give you information, and tell you when workshops are held. My son was added to the med waiver list in 2003 - have never heard anything. I was told that if you call on a daily or weekly basis your case file is pulled every time and stays on the top of the pile and has the potential to get funding quicker. The squeaky wheel gets the grease.

I will tell you that respite care is very infrequent and when you actually get it there is a very limited amount of time and then it is hard to find the people to work for a low amount of money to do this job. I know people who have to provide all the transportation for this 2 hour respite caregivers.

Florida is challenging when it comes to providing money for disabled people of all ages. And it is getting very expensive to live here because insurance companies don't want to ofer insurance on houses any longer, property taxes are going up, bankrupcies are at an al time high and property values are going down. If you work in a service industry or the medical industry you can get a job - otherwise it is hard.

I would think twice about moving here unless the amount of money is more than double what you are getting now and future guarantees are strong. Good luck.


I am a pre-k teacher of children with disabilities and a mom to an ASD kid. Your milage may vary