CHARGE: Re: The Idea of a CHARGE waiver

[Guest guest]

Hey guys,

Just wondering if any family here has ever tried campaigning for a

CHARGE specific waiver. Here in PA when I was working on Campaign to

End the Waiting List I learned of some waivers developed for an

individual with specific needs. It was a few years ago but I remember

talking with someone who had a child who was profound in their needs.

The care needed was intense to care for their child. By getting support

from their legistrator and senator they acually established a waiver

named after their child. In the future any child needing simalar level

of care could aply for this specific waiver.

With CHARGE being rare and so complex in medical needs area I'm

wondering if a CHARGE specific waiver could be persued.

I can't wait for July to get here. If anyone wants to email me directly

for brainstorming I would be willing help look into the possibilities.

I still have allot of contacts that may be of some help.

mom to (31)

[Guest guest]

that sounds a good ideas

>

> Hey guys,

>

> Just wondering if any family here has ever tried campaigning for a

> CHARGE specific waiver. Here in PA when I was working on Campaign to

> End the Waiting List I learned of some waivers developed for an

> individual with specific needs. It was a few years ago but I remember

> talking with someone who had a child who was profound in their needs.

> The care needed was intense to care for their child. By getting support

> from their legistrator and senator they acually established a waiver

> named after their child. In the future any child needing simalar level

> of care could aply for this specific waiver.

>

> With CHARGE being rare and so complex in medical needs area I'm

> wondering if a CHARGE specific waiver could be persued.

>

> I can't wait for July to get here. If anyone wants to email me directly

> for brainstorming I would be willing help look into the possibilities.

> I still have allot of contacts that may be of some help.

>

> mom to (31)

>

>

>

[Guest guest]

I love the thought of that. My son here in Indiana is on a Developmental

Disabilities Waiver (DD Waiver), and I think one that is more specific would be

so much better. It could address the needs that are not currently being met.

Mom to ph () 24 yr

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email to everyone. Find out more about what's free from AOL at

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[Guest guest]

In my advocacy work this past year, this topic has come up as many folks

attempt or desire a diagnosis-specific waiver or program. I think it makes

better sense to add the lacking services to the existing programs - whether

they are for DD or medically-fragile. Diagnosis-specific just leads to more

division in the disability community. If we want a better life for our

kids, we need to come together as one community and advocate for the best

for all of us.

Consider the kids who have no diagnosis. They would not fit in any

dx-specific program. So we need the programs to be based on need, not on

label. We need to expand programs to cover all needs - not create new

programs that only cover certain people.

My 2 cents.

Michele W

Aubrie's mom

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Crickmore7@...

Sent: Friday, March 09, 2007 5:02 AM

To: CHARGE

Subject: Re: CHARGE: Re: The Idea of a CHARGE waiver

I love the thought of that. My son here in Indiana is on a Developmental

Disabilities Waiver (DD Waiver), and I think one that is more specific would

be

so much better. It could address the needs that are not currently being met.

Mom to ph () 24 yr

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol. <http://www.aol.com.> com.

[Guest guest]

I agree with . I think having Dx-specific waivers would divide the

special needs community, when we really need to be uniting together to advocate

to improve the system for everyone. And I also agree with what you are saying

about the kids without a diagnosis. I know of one such child, who is obviously

special-needs and I think more in need of services than my son is. If I were

that mother, I wouldn't feel very good about seeing a child less needy than my

own getting a waiver just because they had a certain diagnosis.

In Washington State, specific diagnoses are being removed from the

qualification for DDD. In order to be eligible for DDD services (i.e. be on the

waiting list for services) the only diagnoses that are listed now is straight

autisim (not a spectrum disorder), mental retardation (IQ <69 or 65--can't

remember exactly), or a unspecified neurological condition that manifests as

mental retardation. Downs was on the list as a separate category, but it has

been removed.

The way the system is set up now, the most needy clients are getting services.

But there are a ton of still needy and deserving of services stuck on long

waiting lists that do not receive any services...and may not ever. It's not a

good situation. More money needs to be allocated to DDD.

What I have been advocating for is to expand on a program in our state that is

already in place--the Children's Health Insurance Program (CHIP). CHIP is set

up right now so that if a family exceeds the income limits to qualify for

medical coupons, they can pay into the system if their income is <150% of the

poverty level. What I have proposed is to raise those income limits for special

needs families, and allow us to buy in to the system too, with monthly premiums

and copays set on a sliding scale based on income. And to make sure the coupon

that you get includes outpatient therapy. I think that this would help

alleviate some of the client load on the DDD system (I know Evan wouldn't be on

the list if this was available).

(mom to Evan, 20 months old in 1 week!)

Michele Westmaas wrote:

In my advocacy work this past year, this topic has come up as many

folks

attempt or desire a diagnosis-specific waiver or program. I think it makes

better sense to add the lacking services to the existing programs - whether

they are for DD or medically-fragile. Diagnosis-specific just leads to more

division in the disability community. If we want a better life for our

kids, we need to come together as one community and advocate for the best

for all of us.

Consider the kids who have no diagnosis. They would not fit in any

dx-specific program. So we need the programs to be based on need, not on

label. We need to expand programs to cover all needs - not create new

programs that only cover certain people.

My 2 cents.

Michele W

Aubrie's mom

_____

From: CHARGE [mailto:CHARGE ] On Behalf Of

Crickmore7@...

Sent: Friday, March 09, 2007 5:02 AM

To: CHARGE

Subject: Re: CHARGE: Re: The Idea of a CHARGE waiver

I love the thought of that. My son here in Indiana is on a Developmental

Disabilities Waiver (DD Waiver), and I think one that is more specific would

be

so much better. It could address the needs that are not currently being met.

Mom to ph () 24 yr

<BR><BR><BR>**************************************<BR> AOL now offers free

email to everyone. Find out more about what's free from AOL at

http://www.aol. <http://www.aol.com.> com.

[Guest guest]

-

The same is true in IL. There are some good services/programs set up. But

they are so severely underfunded that only those in crisis get any help.

The rest are left to manage on their own until they are in the greatest

crisis. Not a good situation for anybody.

Michele W

[Guest guest]

Oh , I agree with you, Michele and - this is so difficult. It seems

incredible that the system makes it so difficult to meet needs - sometimes the

system seems like an oxymoron to its own stated purpose. I hope, long and pray

for a system where everyone should simply receive what they need - but somehow

sadly we are still so far from that. It makes me so much more than just sad. I

know for us in the beginning was very " lucky " - because of his hearing

loss he " automatically " qualified for an IEP (deep gratitude to Deaf rights

advocates). I would have thought other things would be as easy a " shoe-in " but

I have come to learn that is not so. Also, was on oxygen in the NICU

(deep gratitude to preemie and cerebral palsy advocates) - that enables several

agencies to step right in without me asking - attention and services for which

families of infants not on oxygen have to struggle to receive. We received

services easily in two areas that had been paved by advocates that came before

us. It's a big issue - society's priorities and resources...... I think of the

ridiculous hoops our young adults have to go through to prove their needs, and

how they are sometimes " punished " by the system for being capable or

resourceful...and then after all that, the often meager resources they are

handed. Let me not become overwhelmed by migrating from the inequities of

waivers to the inequities of education and the inequities of medical insurance

in general.... .I am reminded of a scripture Amy has on her website for Might

Max....

" His disciples asked him, " Rabbi " , who sinned, this man or his parents, that he

was born blind? "

Neither this man nor his parents sinned, said Jesus, but this happened so that

the work of God might be displayed in his life. " ( 9:2-3 )

We and our children are this work - let us be inspired, empowered and creative.

Who, more than mom like you, could better identify where the system falls short?

And though the goal is always the highest and greatest good for all, the fact

seems to be " the squeaky wheel gets the grease, " - at least the first round of

it ) When I look at the different disorders and diseases that are able to

achieve funding and awareness - all that starts with an internal campaign from

those most intimate with the cause.....and often a " symbol " . More guidelines

can mean more bureaucracy - yet without guidelines, how can we guarantee that

our needs will be seen and met? I find I am overwhelmed when trying to think of

a better, different or new way.... when I look closer, I become enmeshed in the

good intentions that seem to be present, and the many incredible servants of the

system whose hearts are so golden....and my lack of understanding how to create

a new model, so I start thinking within the system, and my gut says the answer

probably isn't ultimately in that direction.....

Perhaps if I state my desire as a goal the universe will rush to meet me. " Our

children's needs are met with abundance, willingness and respect. Supports are

generously provided supporting them to achieve the fullness of their being. " So

say I. So say us all....

Here's to better answers asap!

Holding all of our children cherished and precious, as they always are-

Yuka

Crickmore7@...

Sent: Friday, March 09, 2007 5:02 AM

To: CHARGE

Subject: Re: CHARGE: Re: The Idea of a CHARGE waiver

I love the thought of that. My son here in Indiana is on a Developmental

Disabilities Waiver (DD Waiver), and I think one that is more specific would

be

so much better. It could address the needs that are not currently being met.

Mom to ph () 24 yr