Re: ARC/Advocacy Inc. Lawsuit regarding waitlists for services

[Guest guest]

TO throw a kink in this discussion. If you are your child's guardian you can't be his attendant through CLASS. So once your child is 18, if you are his guardian, you can't be employed through CLASS to work for him.

I don't know about HCS but I assume it is the same. So basically, if your child is involved enough for you to need to be his guardian, you can't be hired to be his caregiver. Seems kind of backwards to me to but I know that is how it is

-----Original Message-----From: Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ] On Behalf Of mum592001Sent: Tuesday, September 23, 2008 11:07 PMTo: Texas-Autism-Advocacy Subject: Re: ARC/Advocacy Inc. Lawsuit regarding waitlists for services

Good question, why can't parent's be the Care provider for theirindividuals for when they are under 18 y/o? A parent can be by the Care provide once the individual becomes anadult at 18 y/o.This is how I am able to be my son's Care Provider once my son hadturn 18 y/o, under an agency. Now remember should you go through CDS, a parent is unable to be theCare provider no matter what age as you are the employer now. Sorry you are not having a good experience with CLASS on servicesbeing implemented. My son will no longer be under the CLASS program which ends of thismonth, he will now enter the HCS program and I will be his Care provider, entering another arena. Under the CLASS program, I finally found several GOOD therapist towork with my son, you name it ST, Recreational therapist, musictherapist, massage therapist, respite, etc. some of them he isreceiving already but the others have been waiting for an approval andit is a no go now, which I could them your way. I was pushing for some of the funds to also be used for ABA andtechnology as some of the MHMR places have found a way to do this inother cities.My hours were going to increase due to him being withdrawal fromschool as he suffers from underlying medical issues and PCS was goingto fill in the gap hours that the other agency did not cover. All was going good here FINALLY, but now it is the next hurdle withthe HCS program. I did utilized my pay for his special diet, some of the interventionswhich were not covered by the CLASS Program. Pay is pretty low whenyou are the Care provider but anything helps when you go this route.Here is another headache, when your child is under 21 y/o receivingthe traditional Medicaid, take advantage of the dental servicesbecause once they reach 21 y/o, Medicaid will no longer pay for dentalservices. When an individual is under the CLASS program, they will notqualify for the Star Plus Program. If under the HCS program, this will only allow $1,000 for dental only. If an individual needs to be sedated, this is not enough to cover thegeneral anesthesia method. Some dental office which I have confrontedwill not even accept private health insurance for when one needs toget sedated. It is joining "when we can" to these DADS council meetings. Calendar Year 2008 Meeting DatesThis where many of us have join forces with Community Now.http://groups.yahoo.com/group/Community_Now/Noewaithttp://groups.yahoo.com/group/NOEWAIT/Irma--- In Texas-Autism-Advocacy , " M. Guppy" wrote:>> Excuse my venting, but my Guppy-Gills are once again flaring...> �> Why in the hell is it ok for a parent of a child OVER 21 to be theattendant care provider, but it's NOT for the parent of a child UNDER21 to do the same?> �> I need to work to help pay for things needs. His diet food,his supplements, etc. I can't work because I don't have attendantcare.� I don't have attendant care because the agency can't provide itand I can't find anyone either.� I can't use daycare because theywon't take him.> �> Why can't, if the agency cannot provide the attendant care for thehours they put on that piece of paper, the parent be "hired" to "work"those hours - using the money earned to pay for those things neededfor the care of the child -- which is why the parent needs to work inmost situations!�� > �> How is that not a discrimination lawsuit that if the child is over21 it's ok -- but not if the child is under 21 - IF the agency cannotprovide a trained, qualified, person to do the work the parent doesfor free!> �> So instead, parents like me, and I have heard from many like me, whoneed to work, can't, and there is no benefit to the system.� At leastif we could work those few hours - that is tax money back into thesystem, etc.> �> I just don't get it!> �> �> Sincerely,> M. Guppy> > > M. Guppy> My autism journey�isn't about waiting for the storm to pass, it'sabout learning to dance in the rain....� > Texas Autism Advocacy:� www.TexasAutismAdvocacy.org> "There are some aspects of a person's life that we have no right tocompromise.� We cannot negotiate the size of an institution.� No oneshould live in one.� We cannot debate who should get an inclusiveeducation.� Everyone should.� We cannot determine who does and whodoes not get the right to make their own choices and forge their ownfutures.� All must."

[Guest guest]

Can they possibly screw parents any harder?

Forget I asked that, I'm sure they can......... and will........

M. GuppyMy autism journey isn't about waiting for the storm to pass, it's about learning to dance in the rain.... Texas Autism Advocacy: www.TexasAutismAdvocacy.org

"There are some aspects of a person's life that we have no right to compromise. We cannot negotiate the size of an institution. No one should live in one. We cannot debate who should get an inclusive education. Everyone should. We cannot determine who does and who does not get the right to make their own choices and forge their own futures. All must."

Subject: RE: Re: ARC/Advocacy Inc. Lawsuit regarding waitlists for servicesTo: Texas-Autism-Advocacy Date: Tuesday, September 23, 2008, 11:15 PM

TO throw a kink in this discussion. If you are your child's guardian you can't be his attendant through CLASS. So once your child is 18, if you are his guardian, you can't be employed through CLASS to work for him.

I don't know about HCS but I assume it is the same. So basically, if your child is involved enough for you to need to be his guardian, you can't be hired to be his caregiver. Seems kind of backwards to me to but I know that is how it is

[Texas-Autism- Advocacy] Re: ARC/Advocacy Inc. Lawsuit regarding waitlists for services

Good question, why can't parent's be the Care provider for theirindividuals for when they are under 18 y/o? A parent can be by the Care provide once the individual becomes anadult at 18 y/o.This is how I am able to be my son's Care Provider once my son hadturn 18 y/o, under an agency. Now remember should you go through CDS, a parent is unable to be theCare provider no matter what age as you are the employer now. Sorry you are not having a good experience with CLASS on servicesbeing implemented. My son will no longer be under the CLASS program which ends of thismonth, he will now enter the HCS program and I will be his Care provider, entering another arena. Under the CLASS program, I finally found several GOOD therapist towork with my son, you name it ST, Recreational therapist, musictherapist, massage therapist, respite, etc. some of them he isreceiving already

but the others have been waiting for an approval andit is a no go now, which I could them your way. I was pushing for some of the funds to also be used for ABA andtechnology as some of the MHMR places have found a way to do this inother cities.My hours were going to increase due to him being withdrawal fromschool as he suffers from underlying medical issues and PCS was goingto fill in the gap hours that the other agency did not cover. All was going good here FINALLY, but now it is the next hurdle withthe HCS program. I did utilized my pay for his special diet, some of the interventionswhich were not covered by the CLASS Program. Pay is pretty low whenyou are the Care provider but anything helps when you go this route.Here is another headache, when your child is under 21 y/o receivingthe traditional Medicaid, take advantage of the dental servicesbecause once they reach 21 y/o, Medicaid will

no longer pay for dentalservices. When an individual is under the CLASS program, they will notqualify for the Star Plus Program. If under the HCS program, this will only allow $1,000 for dental only. If an individual needs to be sedated, this is not enough to cover thegeneral anesthesia method. Some dental office which I have confrontedwill not even accept private health insurance for when one needs toget sedated. It is joining "when we can" to these DADS council meetings. Calendar Year 2008 Meeting DatesThis where many of us have join forces with Community Now.http://groups. yahoo.com/ group/Community_ Now/Noewaithttp://groups. yahoo.com/ group/NOEWAIT/Irma>> Excuse my venting, but my Guppy-Gills are once again flaring...> �> Why in the hell is it ok for a parent of a child OVER 21 to be theattendant care provider, but it's NOT for the parent of a child UNDER21 to do the same?> �> I need to work to help pay for things needs. His diet food,his supplements, etc. I can't work because I don't have attendantcare.� I don't have attendant care because the agency can't provide itand I can't find anyone either.� I can't use daycare because theywon't take him.> �> Why can't, if the agency cannot provide the attendant care for thehours they put on that piece of paper, the parent be "hired" to "work"those hours -

using the money earned to pay for those things neededfor the care of the child -- which is why the parent needs to work inmost situations!�� > �> How is that not a discrimination lawsuit that if the child is over21 it's ok -- but not if the child is under 21 - IF the agency cannotprovide a trained, qualified, person to do the work the parent doesfor free!> �> So instead, parents like me, and I have heard from many like me, whoneed to work, can't, and there is no benefit to the system.� At leastif we could work those few hours - that is tax money back into thesystem, etc.> �> I just don't get it!> �> �> Sincerely,> M. Guppy> > > M. Guppy> My autism journey�isn't about waiting for the storm to pass, it'sabout learning to dance in the rain....� >

Texas Autism Advocacy:� www.TexasAutismAdvo cacy.org> "There are some aspects of a person's life that we have no right tocompromise.� We cannot negotiate the size of an institution.� No oneshould live in one.� We cannot debate who should get an inclusiveeducation.� Everyone should.� We cannot determine who does and whodoes not get the right to make their own choices and forge their ownfutures.� All must."

[Guest guest]

I attended a hearing yesterday testifying on behalf of myself and the

ARC of Texas regarding the FY 2010/2011 DADS budget.

I explained that HCS and CLASS can exclude many individuals with

autism due to the nature of their disability. The ARC is requesting a

new autism waiver or modifying the existing waivers to meet the needs

of individuals with autism. We also requested that the HHSC

recommnedations in the state autism plan be implemented.

DADS had 10 eceptional items in their budget (sort of a wish list

that they would like to seee funded). One of the exceptional items

referred to improving the pay rate direct care providers.

here is the pdf of their budget:

http://www.hhsc.state.tx.us/news/presentations/LAR_2010_2011.pdf

Please send letters to the house and senate HHSC budget committees,

the Governor's office, the leutinent governor's office to fund DADS

exceptional items and implement the HHSC recommendations in the

updated march 2008 state plan for autism.

http://www.dads.state.tx.us/autism/stateplan/2007_StatePlanForAutismUp

date.pdf

Nagla

>

> and all,

>

>

>

> That has been our same issue exactly here in the DFW area. The

CLASS program

> is designed for people with PHYSICAL disabilities, not for those

with

> autism. I have a friend who waited over a YEAR for home

modifications (which

> are provided for) because the home mod she wanted was a FENCE for

her

> backyard to keep her child from running. Because that was out of the

> ordinary for the type of home modifications that CLASS is used to

providing,

> it took an entire year and a litany of approvals before they could

get the

> fence. Ridiculous!

>

>

>

> I am currently the attendant for my over 21 child on CLASS because

I can't

> find anyone qualified who ALSO will work for the fairly low wage

they allow

> us to pay, even on CDS (Consumer Directed Services.where you hire

your own

> people and the agency does the payroll and taxes). When we tried to

actually

> use a DSA (Direct Services Agency), they only sent us 2 people to

work IN A

> YEAR as attendants, and the two they sent didn't have a clue what

to do with

> my children.they only knew how to do basic nursing care and clean

house. I

> wanted someone to work with my children to help teach and practice

skills.

> They said they didn't do that! And when I asked the agency why they

never

> sent anyone to the house for us to interview to hire as regular

attendants,

> they flat out told me " none of our workers want to work with kids

with

> autism " . Gee, thanks a lot!

>

>

>

> This is yet another system that needs MAJOR changes. The agencies

that are

> supposed to administer CLASS and HCS are not listening to what OUR

> population needs for our loved ones. We have to find a way to make

them

> listen. Any ideas?

>

>

>

> nna

>

[Guest guest]

Could the over/under 21 issue be stemming from the legal

age? Could they be thinking over 21 makes their own decisions and under

21 the parent has control? That’s the only thing I can think of,

but we’re not to that age yet.

Tonya

From:

Texas-Autism-Advocacy [mailto:Texas-Autism-Advocacy ]

On Behalf Of M. Guppy

Sent: Tuesday, September 23, 2008 11:18 AM

To: Texas-Autism-Advocacy

Subject: Re: Re: ARC/Advocacy Inc. Lawsuit

regarding waitlists for services

Agreed...

But another point -- if the parent of a " child "

over 21 can be the attendant care provider, how is that different than a

parent doing that for a child under 21 under the same circumstances?

How is that not discrimination?

If the parent of a child over 21 doing that has to do the

paperwork and accountability to the Case Management Agency - why would that

have to be any different for a parent of a child under 21?

The amount of control doesn't change whether it's the

parent or a stranger - if they are both subject to the Case Management rules

and regulations.

What does change - is the level of care. It gets

better if the parent is doing it.

M. Guppy

My

autism journey isn't about waiting for the storm to pass, it's about

learning to dance in the rain....

Texas Autism Advocacy: www.TexasAutismAdvocacy.org

" There are some aspects of a person's life that we have

no right to compromise. We cannot negotiate the size of an

institution. No one should live in one. We cannot debate who

should get an inclusive education. Everyone should. We cannot

determine who does and who does not get the right to make their own choices

and forge their own futures. All must. "

From: mom2boysplano

Subject: Re: ARC/Advocacy Inc. Lawsuit regarding

waitlists for services

To: Texas-Autism-Advocacy

Date: Tuesday, September 23, 2008, 11:10 AM

Very well said. There is no

one better-qualified or more certain to

ensure the best interest of a child is met, than the parent of that

child. Unfortunately, our state manufactures and relies on excuses to

maintain control of the process (aka the money) by cutting parents out

of it. Very much applies to our public school system exclusively

controlling the provision of FAPE to special needs students.

> >

> > " There is a belief that the legislature has added 2,000 or so

> > incremental slots each the last two sessions... "

> >

> > What does it mean to add slots? I assume it means to fund them, so

> > 2,000 are removed from the list every year that otherwise would not

> > have been? And if this is the case, then only about 200 are being

> > funded on CLASS each year without the incremental slots funded via

> > legislative action? In a state the size of Texas? And according to

> > 's experience, even that paltry amount is woefully

> underfunded.

> >

> > It seems like funding more slots via the legislature is not

> > accomplishing anything. If the DADS is setting such unreasonable

> > hourly rates for the providers, then how can anyone expect there to

> be

> > a decent pool of providers available to provide these services when

> > your number does come up? If I were a legislator the last thing I'd

> > want to do is throw more money at a problem with severe regulatory

> > problems and inherent flaws that must be fixed first (kind of like

> > throwing more money into the state institutions. ) I'm really glad

> > Nagla mentioned that this issue is going to be addressed

internally.

> > If done right, that waiting list will probably triple or quadruple.

> > Which I'm sure is huge incentive not to do it at all. It will

expose

> > Texas on the national map of disability services to be even more

> > deficient that it already is.

> >

> > I agree wholeheartedly that our Texas governmental agencies don't

> do a

> > darn thing unless they are sued into it. Clearly, though, sometimes

> > even that is an exercise in futility and monumental waste of funds

> and

> > effort. Our IDEA case is living proof of that.

> >

> > We've had some great laws passed through some incredible effort on

> the

> > part of advocates and elected officials. I'd like to see those laws

> > actually put to work for us. HB 1919 is a huge victory, but not

> > subject to federally-regulated plans under ERISA which most seem to

> be

> > and is too restrictive in age (but it's a great start and we've got

> to

> > start somewhere.) We just got a request from our insurance

company's

> > collection agency TO REIMBURSE THEM for speech therapy they

> > " mistakenly " covered, and at only 60% of $35 per session

after a

> > $3,000 deductible. What kind of a sick joke is that?

> >

> > Then there is the IDEA - Not monitored, not enforced, zero

> > accountability. Our Texas IDS's are taking full advantage of the

> > free-for-all.

> >

> > A ten year waiting list for community services, referred to as

> > " interest " lists by DADS, and no mention of any wait

whatsoever on

> > their website and FAQ section.

> >

> > By far the most state institutions of any state in the country.

> >

> > Yes, Texas, I'd say we have a problem, and it's not getting any

> better

> > playing by the same old set of good old boy rules.

> >

> >

> >

>

[Guest guest]

Hey, we could always start a write-in campaign!! (Not real sure I’m

joking here!!!)

Tonya

From:

Texas-Autism-Advocacy

[mailto:Texas-Autism-Advocacy ] On Behalf Of Dr.

Graham-Garza

Sent: Tuesday, September 23, 2008 12:56 PM

To: Texas-Autism-Advocacy

Subject: Re: ARC/Advocacy Inc. Lawsuit regarding

waitlists for services

Oh don't

tease me.... can you imagine what would life would be like for our kids

as adults if that were true?!?!

-----

Original Message -----

From: M. Guppy

To: Texas-Autism-Advocacy

Sent: Tuesday, September

23, 2008 10:04 AM

Subject: Re:

ARC/Advocacy Inc. Lawsuit regarding waitlists for services

Singleton for

Governor of Texas!!!!!!!!!!!!!!!!!!!!!!!

M. Guppy

My

autism journey isn't about waiting for the storm to pass, it's about

learning to dance in the rain....

Texas Autism Advocacy: www.TexasAutismAdvocacy.org

" There are some aspects of a person's life that we have

no right to compromise. We cannot negotiate the size of an

institution. No one should live in one. We cannot debate who

should get an inclusive education. Everyone should. We cannot

determine who does and who does not get the right to make their own choices

and forge their own futures. All must. "

From: Singleton

Subject: ARC/Advocacy Inc. Lawsuit regarding waitlists

for services

To: " Autism List " <Texas-Autism-Advocacy >

Date: Monday, September 22, 2008, 9:54 PM

Well, as usually happens, the

plaintiffs named in the lawsuits all came off the list within 6 months of

testifying, and their children began to receive services. . . . .but

nothing much else happened. The squeaky wheels were oiled, and life

went on as usual.

In other words, despite the cries of

“frivolous” lawsuits, and curses at those most terrible of

creatures—the trial lawyer--the state of Texas has repeatedly shown,

in case after case, time and time again, same as it ever was, (did I say

repeadtedly? ???) the state of Texas will only provide services when

it is forced to do so by a lawsuit.

That’s what happened with the

prison system.

That’s what happened with the MR

system back in ’85.

That’s what happened with the

school funding system when it created Robin Hood.

This happened 4 years ago when Texas was ordered to go back and fix Robin

Hood.

That’s what is happening with

the state school system.

That’s what happening with the

youth correctional system.

And more importantly the PEOPLE of

Texas are willing to accept and RE-ELECT leaders who do this TIME AND TIME

again.

Of course, no one ever put it better

than good ole Molly Ivins. . .

“State governments have four

basic area of responsibility: roads, schools, prisons, and what

Governor Allan Shivers used to call ‘your eleemosynary institutions’.

In Texas three of the four were so bad they’d been declared

unconstitutional. The schools, the prisons, and the state homes for

the mentally retarded and mentally ill were all under court order. On

top of that, the state faced a huge deficit and clearly needed to restructure

its entire tax system, an utterly regressive, jerry-built, patched-up

fiscal disaster area designed to encourage ‘a healthy bidness

climate.’ So what was the big issue in the [Governor’s]

primary? The death penalty.?”

Molly Ivins, Molly Ivins Can’t Say That; 1991

So what questions are YOU asking the

state candidates who are asking for your vote????

S.

++++++++++++ +++++++++ +++++++++

+++++++++ +++++++++ +++

Can anyone let me know what the outcome was of

this lawsuit filed back in 2002?

I just called DADS to check on the status. Currently the waitlist for

CLASS is 22,790 and is estimated to be running 7-8 years. We signed up

3 and a half years ago in 2/2005 and there are still 16,000 ahead of

us, which would suggest they are moving at a rate of about 2,200 a year,

or over ten years, post lawsuit. Wouldn't this still put Texas dead

last? Would love to see some figures on these waitlists nationally, if

anyone has a source.

" Here in America we are descended

in blood and in spirit

from revolutionists and rebels - men

and women

who dare to dissent from accepted

doctrine.

As their heirs, may we never confuse

honest

dissent with disloyal subversion.

"

Dwight D. Eisenhower

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outgoing message.

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6:39 AM

[Guest guest]

In addition to for Governor - we really need to elect a President who has a child with autism -- the kind of autism where the child can scale an 8 foot fence and be 2 blocks away in a blink of an eye...

Can you imagine the secret service trying to keep up with such a child?

LOL

M. GuppyMy autism journey isn't about waiting for the storm to pass, it's about learning to dance in the rain.... Texas Autism Advocacy: www.TexasAutismAdvocacy.org

"There are some aspects of a person's life that we have no right to compromise. We cannot negotiate the size of an institution. No one should live in one. We cannot debate who should get an inclusive education. Everyone should. We cannot determine who does and who does not get the right to make their own choices and forge their own futures. All must."

From: Singleton <chatmom@kadenastrat egies.com>Subject: [Texas-Autism- Advocacy] ARC/Advocacy Inc. Lawsuit regarding waitlists for servicesTo: "Autism List" <Texas-Autism- Advocacy@ yahoogroups. com>Date: Monday, September 22, 2008, 9:54 PM

Well, as usually happens, the plaintiffs named in the lawsuits all came off the list within 6 months of testifying, and their children began to receive services. . . . .but nothing much else happened. The squeaky wheels were oiled, and life went on as usual.

In other words, despite the cries of “frivolous” lawsuits, and curses at those most terrible of creatures—the trial lawyer--the state of Texas has repeatedly shown, in case after case, time and time again, same as it ever was, (did I say repeadtedly? ???) the state of Texas will only provide services when it is forced to do so by a lawsuit. That’s what happened with the prison system. That’s what happened with the MR system back in ’85. That’s what happened with the school funding system when it created Robin Hood.This happened 4 years ago when Texas was ordered to go back and fix Robin Hood. That’s what is happening with the state school system. That’s what happening with the youth correctional system. And more importantly the PEOPLE of Texas are willing to accept and RE-ELECT leaders who do this TIME AND TIME again.

Of course, no one ever put it better than good ole Molly Ivins. . .

“State governments have four basic area of responsibility: roads, schools, prisons, and what Governor Allan Shivers used to call ‘your eleemosynary institutions’. In Texas three of the four were so bad they’d been declared unconstitutional. The schools, the prisons, and the state homes for the mentally retarded and mentally ill were all under court order. On top of that, the state faced a huge deficit and clearly needed to restructure its entire tax system, an utterly regressive, jerry-built, patched-up fiscal disaster area designed to encourage ‘a healthy bidness climate.’ So what was the big issue in the [Governor’s] primary? The death penalty.?”Molly Ivins, Molly Ivins Can’t Say That; 1991 So what questions are YOU asking the state candidates who are asking for your vote???? S. ++++++++++++ +++++++++ +++++++++ +++++++++ +++++++++ +++ Can anyone let me know what the outcome was of this lawsuit filed back in 2002? I just called DADS to check on the status. Currently the waitlist forCLASS is 22,790 and is estimated to be running 7-8 years. We signed up3 and a half years ago in 2/2005 and there are still 16,000 ahead ofus, which would suggest they are moving at a rate of about 2,200 a year,or over ten years, post lawsuit. Wouldn't this still put Texas deadlast? Would love to see some figures on these waitlists nationally, if anyone has a source.

"Here in America we are descended in blood and in spirit

from revolutionists and rebels - men and women

who dare to dissent from accepted doctrine.

As their heirs, may we never confuse honest

dissent with disloyal subversion. "Dwight D. Eisenhower

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