Special services in different states

[Kaylie]

I am looking for anyone who has tried to recieve services thru their county or state and how many with medically fragile children have been turned away. How many of you feel that there are gaps in the system.how many think the federal giv, needs to step up.

[babyhugger]

All of the above, I believe!

Dawna

[mistymitcheson]

I think the gov. needs to step up and stop giving us (families with special needs children) the run around!!!

Misty

[Kaylie]

Hi,
I totally agree, it seemd so sad that the goverment doesnt want to help the children and their families, when they look to cut benefitd thats the first place they look, i sure wish that we could change that.I want to be someone who can help change things,but i am just not a real political person, i dont understand or know enough about the system and its eveil ways, but i sure am learning. My daughter and myself started out middle income, we are about in the totally poor zone, one and half years later. and now i see that they are looking to take money from other places for the katrina issues, so it seems like once again the children and their families will suffer more, i even saw that eventually SSI will have issues too.this is just way out of control.i wish that we could all wave a majic wand and help everyone.
Kathy

[Presley's Mom]

Kaylie,

here is a copy of an article that my husband wrote to our local newspaper. We have gotten alot of responce out of this. Maybe you could write your local paper. Just remember...Dont give up!!!!

September 1, 2005

“Hold your breath, and hope you never need State Funded Assistance”

I must begin by pointing out the fact that my letter to the editor may come across with a tad bit of frustration and disappointment. However, I feel the need to exercise my constitutional rights and inform the everyday, tax paying citizen of how OUR state agencies go about in helping people in a time of need.

My wife and I are tax paying citizens of Mississippi County and the state of Arkansas. We have always worked, paid taxes, and worked toward building a future for our children and ourselves.

We have never had to bend our knee to ask for any type of government assistance. We’ve always made the best of what we had, and always helped anyone in need the best that we could.

My wife and I were blessed with a beautiful daughter in January of this year. Our daughter was home with us for almost three weeks when she became critically ill.

Our daughter was airlifted to LeBonheur Children’s Medical Center in Memphis, where she remained in ICU for almost three months.

During this time the company I was working for, unexpectedly closed the doors and went out of business. My wife, whom at the time was on maternity leave, could not return to her job because she stayed by our new born daughter’s side as she laid in the hospital struggling for her life.

As the weeks and months passed our daughter improved enough to return home. She returned home with a tracheotomy and a feeding tube. We were so very happy to have her home, but the care she would require would be unimaginable.

That being the case my wife cannot return to work. She cares for our daughter 24/7, and I must say she does an outstanding job.

Our daughter was diagnosed with Cerebral Palsy caused from a viral infection called encephalitis. It is an infection that causes the brain to swell, and in turn, causes brain damage.

I am not complaining about our daughter’s condition, she is a true blessing in our lives. But I do have some information that I would like to share with the public that I feel is a sad, but true infrastructure of our state assistance programs that are suppose to be set up to help people in a time of need, not kick them when there down.

At this time we have been denied social security and disability for our daughter. Although my wife and I are both out of work, I have been sending out resumes’, putting in applications and doing all I can to seek employment.

We have applied for different types of programs that our daughter should qualify for, but as before we were denied. We have been denied any type of nursing services to help with our daughter and the special needs that she requires.

We have had to research, on our own, programs the state has set up for children just like our daughter. We have applied and reapplied more times than I can count.

The paper work that we have filled out is enough to sink a battle ship. We have spent many long hours and days filling out paper work, only to be denied over and over.

The doctor’s records clearly indicate that our daughter’s condition deems her a candidate for these programs. But for some reason the red tape continues to grow and grow as though it symbolizes a huge “stop sign”.

We have had no guidance on programs or services that we could possibly be eligible for. It seems the state personnel; that oversee these state funded programs don’t see a need to educate people on the many different services and assistance that are available for legitimate cases.

I feel like unless you know the system and have used the system; you are just on your own to find out what is out there to help in a time of need.

I know there are some very good people that work in these state offices, and I know that this system was put in place in good faith. But I wish that real, honest, tax paying citizens could see how inefficient and backwards this system, over all, really is.

We aren’t asking anyone for anything, we just want to be informed of any services, programs, or resources that we feel our daughter is entitled to, just like anyone else.

We are not familiar with “working the system” because we have always worked, and fortunately, not had to apply for any assistance.

I feel ashamed for these agencies in our state. I feel ashamed for all of them, from the Governor all the way down.

I am going to start action to get someone to listen to me. If I have to write every legislature, every senator, or whatever it takes, I am going to try my best to see that good, honest people don’t have to play pin the tail on the donkey to get help from an organization that we the tax payers, pay their salaries.

Todd Phipps

[cbissell]

Good article Todd and I feel your frustration. What is really confusing is that each state is different, so you really have to learn how the system works in your state. Here in MA, you would be assigned a case manager to help you navigate the system. Not sure if having the feds take over is the answer to this very complicated problem. Yes, there are gaps. And yes, it's all about politics, but I will refrain from elaborating as I don't want to get into a political debate on this board. I do expect services and "the system" in general to get worse with the growing federal deficit.

[cariaad]

It's really frustrating here in OKlahoma. There is a Network of paents (Oklahoma Family Network) that is organizing mentor parents to help guide new parents thru all the red tape, find competent doctors and schools, and just deal with their "new lives" in general. It is a great support but of course we cant do nearly enough. We have found that there are Dept of Human Service personel who have NO IDEA what programs are available ot how to qualify or access them. Its really sad, but we are working to make changes. I would vot on "all of the above" on the poll. Deb

[cbissell]

Deb, absolutely parent-to-parent networking is so helpful for information as well as moral support. Sounds like a good program but sadly programs like this tend to come and go. Do try to stay involved:-)

Another thing that is frustrating is that not only is every state different, but the different state agencies don't work well together. One thing is for sure, no one will come knocking at your door to tell you what help is available, you have to get out and find it. Often other parents are your best resource.

[Melisande]

As far as I'm concerned, Missouri programs, except for our First Steps (early intervention) are useless. For some odd reason, they have implemented "service coordinators." They are some sort of case manager for specific systems. Funny thing is, there are no services to coordinate! Definitely an oxymoron. They spend more money on administration of "services" than they do on services! Basically, we get nothing but "service coordination" which consists of a person calling and coming out once a year and asking us how things are going and if we need anything. Thank God we haven't needed anything yet, because they don't have anything to provide! Yikes! http://www.tracheostomy.com/iB_html/non-cgi/emoticons/mad.gif

[Kaylie]

Hi,
It seems to me that the whole system needs a complete overload.I think most of the states are lacking what they really need to give families of special needs the support and services they deserve and qualify for,but what i see happens especially is either noone knows the program exist and ask you,who told you about that or were did you see that from, and so on and so forth,i see some people not wanting to do their job responsible enough,because they actually may have to work, instead of being able to chi chat or stuff their faces with donuts and coffee.Our local SS sucks bad, they act like they are giving you something that came right from their pockets and how rude can that be.Its true if u dont know the system, then you are not going to get help, thats the plain trueth,and unfortunately not many of us know the system,but i do know if these same individuals had this situation were they had a child born with special needs who was medically fragile, they would be the first to get in line for everything and anything, and those are who bother me the most. Life just gets harder and harder.I think we all need to have someone speak with us for our children everywhere,someone who willlisten way up the ladder of political status. I wish i paid more attention to politics than i did, because it is like Cindy said, you have to know your state.