Replies to This Discussion

Permalink Reply by Tanya Fleming on July 7, 2008 at 12:14pm

You have to make a request through medicaid and they will send someone out to meet your family and find out your needs. Or else you can check with any home health company and they should be able to guide you too.

• ▶ Reply

Permalink Reply by Samantha Dearing on July 7, 2008 at 1:17pm

It really depends on the state you live in for how much help is out there. You can go to your states web page and research it from there. We live in Texas. texas is horrible when it comes to disability services. i think we rank 49th in services offered. My son is on a medicaid waiver. It took almost 5yrs on the waiting list before our name came to the top for it.

--Samantha

• ▶ Reply

Permalink Reply by Susana Arroyo on July 7, 2008 at 8:19pm

Hello everyone!
I am a little lost, what do you guys mean with waivers?
what type of help or aid do they offer? is it the same as social security?
If anyone could explain this to me, it would be greatly appreciated
Thanks =]

• ▶ Reply

Permalink Reply by Karen Barnett on July 8, 2008 at 12:36am

The way I understand it is a waiver is a program offered through medicaid for chilldren with disabilities or special needs. It is not direct medicaid. Families that have higher incomes or private insurance that don't qualify for medicaid are eligible for these waiver programs. In my state it is Children's Special Health Care Services. It is called the Katie Beckett program in some other states and then yet other states offer similiar waivers under other names. Every state is different and I know some don't have them at all (Illinois I believe is one). We have to pay a monthly fee for the waiver we are in and the fee is based on our income and # of dependents.

I have not found any resources through the state of MI. to help with housing modifications and I have looked extensively. I have heard of others getting help for modifications through these waiver programs in other states. Just gotta dig. They sure don't come looking for you!

• ▶ Reply

Permalink Reply by Bains on July 8, 2008 at 5:38pm

Thank you all. Once I find out what it is and how much help if any it offers, I will share what I learned.

• ▶ Reply

Permalink Reply by Ivy Scherbarth on September 4, 2008 at 9:12pm

My burning question with these programs is whether or not they ease the transition into adulthood. If our son is going to need a helper dog, say, or an aide at school, will he need to be "in the system" already or suffer a multi-year wait? I'm just not sure where to turn for straight answers since our school district PT program social workers are baffled by our family even asking the question of whether the legal mumbo jumbo is worth it. Most people around here just gratefully accept the money whether they need or not.

I know that my brother-in-law, who is mentally handicapped, had to jump through about a million legal hoops and wait for many years to get into his current group home. What's the story for DMD *men*?

• ▶ Reply

Permalink Reply by Lori Ware on September 6, 2008 at 11:08pm

Hi,
As far as school goes, your son would qualify for some type of early steps program through the school system. I would call your local school district and tell them your son has DMD and see what they say. After he gets in school, he will need an IEP, Individualized Education Plan..what is on it is up to you and your school. As far as other services, what state are you in? I am sure there is someone here who has fought the system and can tell you where to go.
Good luck.
Lori

Ivy Scherbarth said:

My burning question with these programs is whether or not they ease the transition into adulthood. If our son is going to need a helper dog, say, or an aide at school, will he need to be "in the system" already or suffer a multi-year wait? I'm just not sure where to turn for straight answers since our school district PT program social workers are baffled by our family even asking the question of whether the legal mumbo jumbo is worth it. Most people around here just gratefully accept the money whether they need or not.

I know that my brother-in-law, who is mentally handicapped, had to jump through about a million legal hoops and wait for many years to get into his current group home. What's the story for DMD *men*?

• ▶ Reply

Permalink Reply by Kristi Powell on September 7, 2008 at 9:07pm

We had medicaid TEFRA in Arkansas, which was mentioned earlier as the Katie Beckett progam. My son was on this even before we knew of his diagnosis due to the developmental delays. We have sinced moved and just to point out, there are differences in the same " medicaid waivers" accross the states. In AR, we qualified regardless of income and had a slight fee to pay due but in TN, they go more by income and if you don't have any outstanding medical bills totaling 2000.00, then you don't qualify. Stupid i know, so therefore we do not qualify in TN. Well, at least that is my understanding. We have excellent insurance for now. I was also told that IF we did qualify, we would be put on a list that is forever and a day. So, none the less we are ok for now, but when things change....YIKES!

• ▶ Reply

▶ Reply to Discussion