A novice on Waivers will comment

[Guest guest]

Hey Y'all,

The subject is waivers.

States and the Federal government have funded programs that provide

for children with special needs, like our RSS kids.

In Virginia, there is a waiver called the E & D waiver.

Translation, the elderly and disabled waiver. Primarily, it's a

tool used by social workers and doctors to get medical help for

individuals in their homes. This waiver is used mostly for people

not quite ready to go into a nursing home situation. I know,

because I use to apply for this waiver for my clients. One of the

many hats I've worn is that of a medical social worker who's primary

duty was helping people find beds in nursing homes. Whew! Talk

about paper work.

Anyway, in Virginia, kids with rss can qualify for this waiver

because of all the eating, and hypo-g, and skeletal issues which

face our kids on a daily basis. In a nutshell, what you are doing

as a parent is keeping your child out of a skilled nursing

situation. The waiver will provide for in home nursing care for

your child called " Respite Hours. " Thus, primary care givers can

get a break.

WHat you need to know, at least in Virgina, is that if you can get

the waiver, than you can get medicaid. It's a loophole in the

system. Don't apply for money first if you are the average car

owner with a mortgage (that's what excluded us initially). Apply

for SERVICES FIRST. So, if you qualify for the waiver, then you

qualify for medicaid. If you apply for medicaid first, and get

denied, you will have to get a congressman to write a letter before

you can get your local Social Services to talk to you again. Seen

it happen to many times!!!!!

There are other waivers out there. When he was younger, One social

worker wanted to put Connor on a MR waiver. However, Connor isn't

mentally retarded. Needs more care than the average kid, but

certainly not developmentally delayed in any way. However, RSS

babies on g-tubes and vents do qualify for this type of service. I

think this wavier only lasts for five years. Someone correct me if

I'm wrong. You may be dropped down to another waiver in time. You

need to get familiar with what your state provides. RSS kids are

tricky. They don't fall under clear, defined guidelines due to the

rarity of the syndrome. Cebral Palsey - no problem. Mentarl

Retardation, no problem. Rare genetic disorder which creates drop

dead gorgeous human beings who don't like eat to and have short

limbs, not so easy. My social worker has been making phone calls

for over a year before she finally found the right person to talk

to. We had the head of services in Richmond (the capital) say that

Connor qualified but we couldn't get our local health dept. to asses

him because he wasn't M.R.D.D. or cebral palsey. In fact, it was

only today, the health dept. nurse and social worker (not my regular

one) came to my house and did the Uniform Assesment tool on Connor

to determine qualification. I was glad to inform them that of the

seven cases of RSS in the state of VA, I knew of two who were

already on this waiver (Thank You Alison !!!) Hence,

precedent set, they can't deny him for being the only one. Once he

gets the waiver, we apply for medicaid. They have to reply 45 days

from the time that his waiver is granted. Thus we will get

secondary insurance for Connor. AFter Medicaid, you apply for SSI.

This is also known as disability income. Once again, a tricky spot,

but if you are accepted in one program it can open doors to others.

Persistence and Patience are needed when navigating the muddy waters

of our beloved Social Services dept. Find a passionate Social

worker who advocates for children. Make phone calls. pester. Be

diligent. No doesn't always mean no. It's just not yet. By pass

it all and write your local congressman describing your situation.

They have the power to overide the system and get you on the service

list.

Most states have Early Intervention programs which cover kids from 0-

3. See if you can get these services first because then you have an

individual who knows the system and advocates for you.

Find out if there are any other rss kids in your state and see if

they are getting similar services.

These are the stategies that helped our family. I love my social

worker. I made her 5 lbs of my gourmet fudge for Christmas. I

think she ate it all becaue I've been seeing her at the Y a whole

lot more than I use too <wink>.

Hope that helps!

Mom to Graham 7 ADD; Cameron 4; Connor 2 IUGR, RSS, Asymmetry,

Kyphosis, Periactin, Prevacid, Zantac, GH in February