: Aggressive Behavior/getting services

[Guest guest]

The trouble with Waiting LISTS is that they imply that there is a numeric

order. There isn't. Think of it more like a cattle pen. The cow that

waves its horns, makes a break for the gate, moos loudest, gets service

first. i do know that finding out the rules in your state and using the

telephone as Becky did is very helpful. I asked every person who I had

contact with what the next step was, who had to make a dcision, etc. Then I

called within the time line given. After we were accepted, I called EVERY

MONTH. We were put in the Urgent class (must be like crisis) which means

within a year. The only thing between us and the $$$ was EMERGENCY - which

means TODAY>

I am not sure what we did when we moved to GA to get Elie accepted on a

waiver list . Persistence must have helped because within a year a partial

support waiver and within 2 years, a full residential waiver. One of the

factors was our 'health crisis' in that my dh has had several surgeries,

our age, Elie's need for 24/7 supervision, our house (when the intake people

came, they saw that we were totally fenced, with alarms on doors, at the end

a cul de sac, at the bottom of a l9ong hill, 3/4 mile from a main road,

etc. All aimed at keeping Elie safe. Elie had no health issues, but SAFETY

is huge.

The 2 factors on Medicaid is HEALTH AND SAFETY>

>

>

> Hi Becky,

> good work on your part! This happens with our waiver here in Florida as

> well which now has an I don't even know how many years waiting list. They

> definitely will take a family that is in crisis if you scream loudly enough.

> Sadly it has to come to that. Most parents don't even know there is such a

> thing as a crisis waiver that moves you up the list down here.

> I pray that you get some rest and enough peace to figure out your next

> move.

> Sherry

>

>

> ,

>

> Sounds like you are going through what we have been for about 1-2 years

> now. Dylan is 15, non verbal, type 1 diabetes, down syndrome & autism. He

> became agreeressive and violent in the last two years, started slow, grew to

> be a problem we couldn't manage. We also have a three year old son and

> became very concerned for the safety of everyone in our house...even our

> dog, who went to live with my parents for a while b/c Dylan was

> hitting/hurting him. Honestly, we were very close to the point of out of

> home placement and I begged for about a month trying to get Dylan placed at

> Central Wisconsin Center, a " state " hospital who would keep him for 1-3

> months to do a med detox & evaluate behaviors & make recommendations.

> Problem was you could only get your child there if the county paid a $10,000

> deductible, which, of course, they weren't willing to pay and the center

> wouldn't accept private insurance or medical assistance.

>

> Basically everyone (social services, school, other parents) told me you

> won't get any help unless you call the police. Well that sucks and I wasn't

> about to do it. We kept getting promised respite care, but there were no

> providers in our county that could handle the diabetes part of it. I finally

> started making phone calls every single day to our county case worker and

> the state (the children's waiver office - Dylan didn't have waiver at that

> point). Finally got their attention, got a meeting scheduled to see what

> " my " problem was. Had every person that I could possible have there in our

> support (parents, my sister & her husband, school nurse, teacher, school

> psych, my in-laws, my cousin). The meeting ended up not being as productive

> as I had hoped, but was a starting point and I got their attention & let

> them know we weren't going away or backing down, we needed help.

>

> Finally the person at our state waiver office called back and said it

> sounded like we had a " crisis situation " which, I guess, are the magic buzz

> words. Heck yes we had a crisis situation, for the last year or so. State

> contacted our county and got us " bumped up " on the waiting list (of course

> County gave me the sob story about how others have been waiting longer than

> me & those people won't like that we jumped in line - OH WELL! I know

> parents of kids younger than Dylan who have the waiver so I know we were

> passed by plenty of times too). And it's rediculous that we have to wait 15

> years to get on a children's waiver so we can get a few years use out of it.

> I also indicated that we were at the point where we couldn't care for him in

> our home anymore.....which helped things along. So, what we ended up getting

> through the waiver & all of this to help us is the following:

>

> Behavior analyst - observing at school, at home, offering suggestions in

> dealing with his behavior. Almost kind of like a super nanny

> experience....but on a different level.

>

> New psychiatrist - who actually prescribed a medication that HELPED!!!!

> Dylan actually is attemtping to communicate his frustrations (pointing,

> leading us to something) instead of lashing out physically. THIS IS HUGE! I

> believe, that the med., in combination with the suggestions from the

> behavior analyst have made a lot of different.

>

> RESPITE - Dylan was approved for 4 days a month at a neurobehavioral

> specialty hospital 45 minutes from our home. They handle his behaviors,

> diabetes & the whole nine yards & I know he is safe there. He just had his

> first weekend there this last weekend. I am hoping 4 days a month will give

> us the break we need to recharge and plug through the rest of the month

> without losing it.

>

> We are also waiting to hear from Kennedy Krieger - filled out the paperwork

> to get an appt with Dr. Capone & have oodles of med tests done to rule out

> other things. It's a drive 1/2 way across the country, but we feel like we

> have no other choice.

>

> I hope and pray that this will help us becasue I am so afraid of what our

> next step would need to be if it gets back to violence. I fear the future. I

> keep trying to remind myself that we haven't failed........but it's so hard

> not to think that way.

>

> I know I probably didn't have any helpful info. for you.....but my advice

> is keep hounding the county/state for something....phone calls everyday.

> It's cheaper for them to get you on a waiver or some type of respite care

> than it is for them to have to care for your child because you can't.

>

> Hang in there - I totally understand where you are right now.

>

> Becky

> mom to Dylan, 15, DS/Autism, Type 1 Diabetes, ADHD & a whole bunch of other

> labels that it's just way too depressing to list!

>

>