Let's Get Together, Inc.

March 19, 2006

Dearest Advocates:

Today on the front page of the Athens Banner-Herald (including 4 pictures too!)was a FANTASTIC article on the Katie Beckett Waiver situation! This is the type of media coverage we need to continue to have on the issues facing our families........Like I said before, only through educating and building awareness in the community, and working with our legislators and Governor are we going to be able to make a difference in lives of children and adults with disabilities!

Please take a moment to thank the reporter, Lee Shearer, for his in depth coverage of the situation. His email address is: lee.shearer@onlineathens.com. Also, please copy the following people on your thank you's:

courtney.pomeroy@onlineathens.com - Courtney Pomeroy- Feature Editor william.stewart@onlineathens.com - Bill Stewart - News Editor

In addition, I want to personally thank the following families for allowing the media into their lives: The Kitchens, Steed and McMann families!

UNITED....WE WILL MAKE A DIFFERENCE!

Sincerely,

Heidi

=====================================================

Here is the article:

Families fight state to keep aid

Georgia changing its tune on a vital Medical Care Program

Having taught herself to play piano, Merrell Steed, 16, sings a song from Neil Young's "Prairie Wind" album during her nightly jam session with her father, Doss, at their home last week in Franklin County. Merrell, an accomplished pianist, suffers from autism, and her parents depend on an obscure Medicaid program to help with her care.
Caleb Raynor/Staff

Jack Kitchens, 6, lies on his side as sonographer Brianna Hay gives him his annual sonogram at St. Mary's Hospital recently. Jack has a rare metabolic disorder called cystinosis, in which an amino acid called cystine accumulates in cells and can lead to kidney failure.
Caleb Raynor/Staff

Merrell Steed, 16, does her typing excercises at Franklin County High School on Thursday. Despite a difficulty with dexterity, Merrell can type 12 words a minute, which would not have been possible without her occupational therapy.
Caleb Raynor/Staff

Jack Kitchens, 6, sneaks a french fry while his father, Travis, prepares the rest of the meal at their home in Athens recently. The side effects from his cystinosis causes Jack to hydrate constantly, increasing his craving for salty foods. His parents would rather him eat than rely on a feeding device that many children who are diagnosed with the disease must use.
Caleb Raynor/Staff

By Lee Shearer | lee.shearer@onlineathens.com | Story updated at 11:57 PM on Saturday, March 18, 2006

For years, Sharon and Doss Steed have depended on a little-known Georgia Medicaid program called the Katie Beckett waiver, designed, quite literally, to keep families together.

For most of their 16-year-old daughter Merrell's life, it's helped the Franklin County couple pay for the hundreds of thousands of dollars in therapy and treatment needed by Merrell, who suffers from autism. The brain disorder severely affects the teen-ager's ability to communicate and socially interact with other people, and shows up in surprising ways.

Talking is not a strong point, for example, but Merrell, a talented pianist, plays duets with her guitar-playing father and sometimes weeps when she hears Brahms.

Now, thanks to recent changes in state rules, the Steeds may lose the state help that's allowed them to keep them going financially.

For years, workers in the state Department of Human Resources approved the family for help from the Katie Beckett waiver, meant to help families with incomes too high to qualify for Medicaid or PeachCare, state programs which provide no- or low-cost health insurance.

Though the Steeds' private insurance pays for most costs, even a 10 percent co-pay on medical costs like Merrell's is a financial burden enough to sink most family budgets. Born premature in 1989, Merrell also suffered other medical complications as a child. Medical bills in her first year of life alone amounted to $500,000, said Sharon Steed.

The Katie Beckett waiver program, named for the Iowa girl whose parents convinced President Ronald Reagan to authorize Georgia's and 19 similar state programs in 1982, gives financial help up through the age of 18 when a child's disabilities are severe enough to warrant long-term institutional or skilled nursing care. It's called a waiver because normal federal rules for how Medicaid money can be spent were waived -with federal approval - to create it. Funded partly by state and partly by federal dollars, it's available to help families who want to keep their children at home - though the rules say parents must demonstrate that the cost of keeping their child at home is less than the cost of institutionalization.

Two years ago, the state of Georgia changed the rules, however, saying many children whose families were getting the help did not have disabilities severe enough to qualify.

Of about 6,000 families getting aid, by January about 1,600 had been denied continuing coverage in the program, which requires annual renewal, said Heidi Moore, an Alpharetta woman who has become an advocate for the thousands of families who depend on the Katie Beckett waiver.

The Steeds are one of those families denied.

They appealed their first denial, but their appeal also was denied. Now, they're moving toward a formal appeal hearing, which could be costly: Under state rules, the family can be required to pay for all treatments between the second denial and the hearing decision, if it goes against the Steeds.

"They want to know why the parents are upset," said another mother whose application for renewal was denied last year, Melissa McMann of Winder. "Your kid depends on this to stay alive."

Fighting back

State officials last year notified McMann and her husband, Chris, that their son J.C.'s disability, cystic fibrosis, was not severe enough to stay in the program, a ruling that astounds Melissa McMann still, even after her appeals got the decision reversed.

She appealed not just to the private company that makes eligibility decisions under contract to the state, but repeatedly called and e-mailed U.S. Sen Johnny Isakson, R-Ga., and other elected officials..

McMann's son relies on the Katie Beckett waiver to pay for such things as transportation to the doctor. McMann is visually impaired and can't drive J.C., and it would be too costly for the family if Chris McMann had to leave work as frequently as J.C. must go to doctors, she said.

Like many Katie Beckett waiver recipients, what the McMann family gets isn't a lot, about $8,000 last year, she said.

But they're far from rich, and that $8,000 means a lot, she said.

"It's critical for him," McMann said.

One of the effects of cystic fibrosis is that J.C. produces thick mucous, instead of the thinner substance most people's bodies produce in their lungs and stomach. It's a chronic infection, and can turn something that would be an annoyance for many children into a life-threatening condition.

"In his case, a cold turns into pneumonia, which lands us in the hospital," McMann said.

Before the family found out about the Katie Beckett waiver, they couldn't afford to pay for adequate treatment for their son, McMann said.

"We skimped on doctor visits. We took him only when he was sick," she said.

McMann has become a "reluctant activist" after her family's experience, not just because of the denial, but because of the annual time-consuming red-tape ordeal of reapplying and getting the same letters from doctors and compiling other documentation. This year, the family received a letter saying their renewal application would be due barely a month after their appeal was granted.

"The whole thing is insane. There's nothing that makes sense about any of it," McMann said. "The state wants to make it seem like these kids are not seriously ill. The state is sort of making it seem like it's not a big deal."

Off, then on again

Travis and Bette Kitchens of Athens have just gone through almost the same experience as the McManns: Denial, then reinstatement, for their son, Jack. The 6-year-old has a rare metabolic disorder called cystinosis, in which an amino acid called cystine accumulates in cells and can lead to kidney failure.

Jack has to take medicines at precise intervals seven times a day, and checkups can involve long airplane trips, since so few doctors know much about the rare disorder.

Like the other families, the Kitchens' own health insurance pays for most medical expenses, but even the small percent the insurance doesn't cover amounts to big money for the family, so the Katie Beckett waiver is important to them.

"It's the greatest thing for us and for a lot of families. Without it I don't know how we'd get by," said Travis Kitchens, a computer programmer at the University of Georgia's Georgia Center for Continuing Education.

Help is on the way for at least some of the families the state has kicked off the program, thanks perhaps in part to the activism of people like Moore - the advocate - and McMann.

The legislature kicked in $3.6 million to help this year, adding extra funding to take in families who'd been kicked off but not reinstated.

But some may have given up by now, Moore said.

"It certainly has been more of a bureaucratic nightmare than it should have been," said state Rep. Mickey Channell, D-Greensboro, one of the legislature's top experts on health care.

Cuts went too far

Channell, one of the principal authors of the PeachCare program that provides insurance coverage for children whose parents have no insurance, said state administrators went too far in tightening eligibility requirements for the Katie Beckett waiver.

"I don't mean it was overzealous enforcement of the rules," Channell said. "We just think in some ways the department was incorrect."

The state also has relaxed some of the eligibility requirements, though Moore says she's still worried the new rules will keep out children who need and deserve help from the program.

Keeping funding up for the program has been a struggle for the past several years, says Moore, whose family receives help from the Katie Beckett waiver because of her 6-year-old son's Down syndrome.

And though Moore believes Americans are coming to believe disabled people "should and can play a bigger part in our communities, and do have something to give," the struggles over funding are likely to continue in the future, she conceded.

"It all comes back down to money and numbers. It's a numbers game. I think they thought they'd be able to implement this and parents wouldn't fight back. But we did," she said.

The money question won't go away, Channell said.

"There are always more needs, I mean meritorious needs, than money to pay for them," especially as health care consumes more and more of the state budget, he said

"The health care budget has been steadily increasing, not only in real dollars but as a percent of the budget as well," he said. "To some degree, that's of necessity at the expense of certain other things. If one goes up, naturally something else goes down."

Published in the Athens Banner-Herald on 031906

--
Heidi J. Moore
(Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old)

"Help The Children Now, So They Can Help Themselves Later!"

The material contained in this e-mail is for general information only. It
is not intended in any way to provide or offer legal advice. To obtain
legal advice, please consult with your attorney or a qualified legal
representative.

March 8, 2006

Dearest Advocates:

Today in the Gwinnett Daily Post and the Albany Herald local newspapers were articles regarding the Katie Beckett Waiver funding by reporter, Dave Williams.

Please take a moment to thank Dave at both the Gwinnett Daily Post and Albany Herald for his on-going coverage of this issue: dave.williams@albanyherald.com and dave.williams@gwinnettdailypost.com .

In addition, please take a moment and copy the following editors on your thank you's to Dave:

todd.cline@gwinnettdailypost.com

kayread@albanyherald.com

This is the type of media coverage we need on the issues that impact our children....... Like I said before, only through educating and building awareness in the community, working with our legislators and Governor are we going to be able to make a difference AND WE ARE MAKING A DIFFERENCE!

Happy Reading. Sincerely, Heidi

===================================================

From the Gwinnett Daily Post Newspaper:

Beckett parents winners in House budget

03/08/2006 -

By Dave Williams
Staff Writer
dave.williams
@gwinnettdailypost.com

ATLANTA � Georgia families cut off from a Medicaid program for their children with severe disabilities would get their coverage restored under a budget bill the House is expected to pass today.
Lawmakers are expected to set aside $7.6 million for families who have been dropped from the Katie Beckett program because of stricter eligibility requirements being enforced by the state.
�We�re going to take care of these families who were depending on Katie Beckett and lost it,�� Rep. Ben Harbin, R-Evans, chairman of the House Appropriations Committee, said shortly before the panel approved Gov. Sonny Perdue�s $18.7 billion 2007 budget request and sent it to the full House.
The committee also tacked on 3 percent pay raises for about 10,000 state public safety employees, on top of the 2 percent to 4 percent increases Perdue recommended for teachers and state workers.
That means employees of the Georgia Bureau of Investigation and the departments of Corrections, Juvenile Justice, Pardons and Paroles and Public Safety would receive raises of least 5 percent.
And House budget writers made a host of changes to the governor�s proposals in health care spending, including funds to provide community-based services to an additional 2,000 of Georgia�s elderly, mentally retarded and developmentally disabled.
The Katie Beckett coverage would go to more than 1,600 Georgia kids with diseases including Down syndrome and autism whose families have lost coverage since last fall.
That�s when the state Department of Community Health began tightening eligibility on orders from the federal government.
Several weeks ago, Senate Democrats spearheaded an amendment to the 2006 midyear budget earmarking $3.6 million to help those families get through the rest of this fiscal year, which ends on June 30.
House Republican leaders put in another $4 million during subsequent negotiations with their Senate counterparts.
�It�s not going to cover everybody who wants to get in the program,�� Senate President Pro Tempore Eric Johnson, R-Savannah, said Tuesday. �The ones we�re trying to take care of are the ones who did qualify and then the criteria changed.��
But the money would come with strings that have advocates for the Katie Beckett program concerned.
The budget the House will take up today refers to the $7.6 million as �one-time�� funding. It calls for the creation of an independent foundation to handle the program in the future.
Johnson said lawmakers hope the foundation will be able to �leverage�� private contributions to augment what the state provides.
�The state can�t afford to take on the whole Katie Beckett program,�� he said.
Harbin said the �supplemental�� raises for public safety employees would let Georgia catch up with what surrounding states pay their troopers and prison guards.
�We should have been embarrassed,�� he said. �We were way under everyone around us in payroll for these people.��
The additional funds the budget committee earmarked for community-based services would allow the state to serve another 500 elderly Georgians and 1,500 mentally retarded and developmentally disabled � half children and half adults.
The state has been plagued for years with long waiting lists for those services.
Gwinnett County also fared well in the House budget. Lawmakers kept a couple of spending items recommended by the governor and made an addition steered in part toward Gwinnett.
The spending plan includes $2 million in bonds to build the Hamilton Mill branch library and $1 million in startup costs for Georgia Gwinnett College, both part of Perdue�s budget request.
The House even goes one-up on the governor with the library money, suggesting that it be put in the midyear budget instead of being held until fiscal 2007.
House budget writers also added $500,000 for health departments in 10 fast-growing counties � including Gwinnett � that have outstripped the state�s decades-old formula for public health grants.

====================================================

From the Albany Herald Newspaper:

Budget request gets OK

The House Appropriations Committee approved $5 million in bonds to build a nursing/health science building at Darton College.

Dave Williams

ATLANTA � State employees, Darton College and families with disabled children are expected to see more state taxpayer money come their way under the budget set for a vote in the state House today.

Lawmakers are expected to set aside $7.6 million for families who have been dropped from the Katie Beckett program, which gives financial help to certain families with disabled children, because of stricter eligibility requirements being enforced by the state.

"We're going to take care of these families who were depending on Katie Beckett and lost it," Rep. Ben Harbin, R-Evans, chairman of the House Appropriations Committee, said Tuesday before the panel approved Gov. Sonny Perdue's $18.7 billion 2007 budget request and sent it to the full House.

The committee approved $5 million in bonds to build a nursing/health science building on the campus of Darton College.

John Millsaps, a spokesman for the state University System Board of Regents, said the Darton building was not among 13 "minor" capital projects recommended by the governor for next year �projects costing $5 million or less. However, it was on the list of projects the system requested, he said.

The 28,000-square-foot building would allow Darton to consolidate its nursing and allied health programs under one roof. It would include classrooms, labs, faculty offices and a 150-seat meeting room.

The House budget panel also rejected Perdue's recommendation to zero out state funding for the Eufaula, Ala.-based Historic Chattahoochee Commission, which operates over a wide swath of western Georgia and eastern Alabama. In fact, the committee wants to double the agency's current funding to $105,000.

Doug Purcell, the commission's executive director, said Alabama budget writers also are eyeing the commission favorably, agreeing to a significant increase after yanking its funding during the recent economic downturn.

"We hope to be able to expand and get back to some of the things we've been doing in the past," he said.

The committee also tacked on 3-percent pay raises for about 10,000 state public safety employees, on top of the 2-percent to 4-percent increases Perdue recommended for teachers and state workers.

That means employees of the Georgia Bureau of Investigation and the departments of Corrections, Juvenile Justice, Pardons and Paroles and Public Safety would receive raises of least 5 percent.

And House budget writers made a host of changes to the governor's proposals in health-care spending, including funds to provide community-based services to an additional 2,000 of Georgia's elderly, mentally retarded and developmentally disabled.

The Katie Beckett coverage would go to more than 1,600 Georgia kids with diseases including Down syndrome and autism whose families have lost coverage since last fall. That's when the state Department of Community Health began tightening eligibility on orders from the federal government.

Several weeks ago, Senate Democrats spearheaded an amendment to the 2006 midyear budget earmarking $3.6 million to help those families get through the rest of this fiscal year, which ends on June 30.

House Republican leaders put in another $4 million during subsequent negotiations with their Senate counterparts.

"It's not going to cover everybody who wants to get in the program," Senate President Pro Tempore Eric Johnson, R-Savannah, said Tuesday. "The ones we're trying to take care of are the ones who did qualify and then the criteria changed."

But the money would come with strings that have advocates for the Katie Beckett program concerned.

The budget the House will take up today refers to the $7.6 million as "one-time" funding. It calls for the creation of an independent foundation to handle the program in the future.

Johnson said lawmakers hope the foundation will be able to "leverage" private contributions to augment what the state provides.

"The state can't afford to take on the whole Katie Beckett program," he said.

Heidi Moore of Alpharetta, a leading advocate for Katie Beckett parents, said they're worried about getting a foundation up and running.

"My concern is what foundation can step up to the plate and implement this as soon as we need it," she said.

Harbin said the "supplemental" raises for public safety employees would let Georgia catch up with what surrounding states pay their troopers and prison guards.

"We should have been embarrassed," he said. "We were way under everyone around us in payroll for these people."

The additional funds the budget committee earmarked for community-based services would allow the state to serve another 500 elderly Georgians and 1,500 mentally retarded and developmentally disabled half children and half adults.

The state has been plagued for years with long waiting lists for those services.

--
Heidi J. Moore
(Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old)

"Help The Children Now, So They Can Help Themselves Later!"

The material contained in this e-mail is for general information only. It
is not intended in any way to provide or offer legal advice. To obtain
legal advice, please consult with your attorney or a qualified legal
representative.

Dearest Advocates:

Today I received an e-mail from Jessica Harris-the reporter from the Oglethorpe Echo local newspaper saying this......

"I have received so many emails from parents about last week's article in the Oglethorpe Echo on Katie Beckett! I appreciated them all so much, and was so touched by the personal stories that I decided to write my weekly column this week on the response that I received from the parents, and some of the personal stories that were shared with me. I thought you might like to read it, so I attached it to this email. Thanks again for all your help!" Jessica Harris

Thank you to all the families that took the time to write a thank you to Jessica. Obliviously, we are making a difference in educating the community we live of the situation and how it is directly impacting lives. I have received over 20 e-mails from families in that area due to this article alone wanting information on what is happening with the Katie Beckett Waiver! This once again shows us that getting the proper media attention not only helps educate the community but also helps other families that may not have our network of information available...but do now!

In addition, I should be receiving the new eligibility criteria any day now from the Dept. of Community Health....I know this is a frustrating time.... Hang in there!

Heidi

=====================================================

Here is the article for your review:

Column on Katie Beckett Response

By Jessica Harris

Staff Writer - Oglethorpe Echo Newspaper

jharris@oglethorpeecho.com

Since I began working at the Echo last August, I have received responses to articles I�ve written on occasion. Usually they consist of a phone call or seeing a person face-to-face who thanks me for writing the article and getting the word out about whatever event they�re having or issue they�re facing.

Sometimes I even receive a negative response, although this has only happened once or twice, thankfully. These are typically unjustified and short-lived. Until recently, however, I have not received response to an article that has touched me and truly made me glad that I was able to be a part of something in some small way just by making it known to the public.

This past week, I wrote an article that appeared on the front page concerning the Katie Beckett Medicaid Waiver. Thousands of families across the state have depended on this waiver to help them care for their children with chronic, lifelong diseases that require large amounts of medication, treatments, doctor and hospital visits, and procedures. These needs add up to astronomical bills that primary insurance cannot cover.

These families had been relying on the Katie Beckett Waiver as their secondary insurance to pay for many of the medical bills incurred. Once the government began enforcing the criteria to determine who received the waiver too strictly, children began being denied left and right for coverage that they desperately needed.

The day after my article appeared in the paper, I came to work and opened my email to discover I had over thirty emails from parents of special needs children. These parents had all received an email with my article attached from Heidi Moore, who is spearheading the grassroots advocacy movement to have the criteria for Katie Beckett changed to include the children that were once receiving the coverage.

Every single email thanked me profusely for publicizing the issue and making everyone aware of the situations these parents are facing. What truly touched me about the emails, though, were the personal stories so many parents shared with me about their children. Their pride and love for their child was evident in their words, and their desire to do everything they could to insure the health of their child was palpable.

Dawn Shepherd, mother of four-year-old Garrison, said, �My husband and I have not slept through a night in four years due to our son�s cerebral palsy and seizure disorder. Most families that live with the kind of physical, emotional, and financial stress that we have end up in bankruptcy or divorce even with Katie Beckett�s help. We cannot push these families over the edge. They need glue to help them stay together. For us, it is God and the Katie Beckett waiver that help us get through.�

Karen Beauvais of Acworth, GA agreed with Shepherd�s consensus about the financial strain of a special needs child: �We have a son with Autism. Our self-pay insurance has gone up in price past our mortgage payment. Our son requires weekly therapy and thousands in out-of-pocket care for metabolic issues. If not for his Katie Beckett speech therapy he would never be talking today. Autism strikes 1 in 166 children and has been on the rise. We have literally emptied our savings to help him.�

Almost all of the parents that emailed me stressed the fact that they were taxpaying, voting, middle-income citizens that were only asking the government to help them help their children have the best life they could considering their situations. Jay Ulrich, father of a ten-year-old with moderate Cerebral Palsy, said, �We did not seek to live off the government, or anyone else. My wife and I are middle class, hard workers, trying to teach our son independence now, so that society doesn't have to care for him later. But without Katie Beckett, he will not receive all the therapy he requires, the medication he needs, and the support items, without nearly bankrupting us. We work hard and didn't want to use Medicaid, but at some point we were forced to swallow our pride and do what we must.�

Several parents I heard from had already received an initial letter of denial and had appealed that decision. Their appeals were under review, and they were simply waiting to hear whether they would be denied for good or would actually receive the coverage they originally had. Allison Valdes of Alpharetta has a four-year-old with Cerebral Palsy and a seizure disorder. She has appealed the first denial she received and is waiting to hear the results.

She said, �I've only asked for assistance for Reagan with his therapies that our
insurance doesn't cover, not everything I could claim with our Katie Beckett coverage. We
don't abuse the system and only ask for what we really need so that there will be funds for everyone that needs help. If the politicians making these decisions to cut funding for this program would come out and see first-hand how their decisions are affecting families, not
just some numbers they see on a �report,� they would feel very differently about their decisions.�

Chance and Ann McColl are one of the parents who have received their final denial for Katie Beckett this month. Ann said, �Our eight-year-old daughter, Faith, has Mitochondrial Disease. We are devastated that we have lost this wonderful coverage. We aren�t sure what we will do when our 20 visits run out and our daughter is no longer able to receive the therapy she needs so desperately. We just can�t afford the $240 per therapy three times a week on top of all her medication and hospital bills.�

Another parent with a child with Cystic Fibrosis did not find out that their Medicaid coverage was canceled until they went to a pre-op appointment and were told that their Medicaid was being denied. It is blatantly obvious that something must be done within the system to make sure that these children do not �fall through the cracks� and go without the coverage they so desperately need.

Changes are currently being made to the Katie Beckett criteria that will hopefully reinstate many of the children that have been denied and make it possible for others to receive the proper care needed. Until then, all the families can do is continue writing letters, visiting legislators, praying, and waiting.

--
Heidi J. Moore
(Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old)

"Help The Children Now, So They Can Help Themselves Later!"

The material contained in this e-mail is for general information only. It
is not intended in any way to provide or offer legal advice. To obtain
legal advice, please consult with your attorney or a qualified legal
representative.

February 22, 2006

Dearest Advocates:

I was notified today that the local newspaper, Oglethorpe Echo had an article on the Katie Beckett Waiver situation in this week's edition and it was on the front page- main headline! Please take a moment to thank the reporter, Jessica Harris, for her in depth coverage of the situation. Her email address is: jharris@oglethorpeecho.com.

This is the type of media coverage we need to continue to have on the issue....... Like I said before, only through educating and building awareness in the community, and working with our legislators and Governor are we going to be able to make a difference in this difficult time for disability issues in Georgia!

Hope to have the eligibility criteria very soon from DCH.

See you tomorrow at Disability Day.

Sincerely, Heidi

=====================================================

Here is a copy of the article for your review:

Katie Beckett program important to many

By Jessica Harris

Staff Writer

jharris@oglethorpeecho.com

Imagine being a person with a middle-class income having a child born with a lifelong, crippling disease or disability. Imagine that child needing treatments twice a week that cost $7,000 a piece. Imagine countless surgeries that cost as much as $250,000 each time. Now imagine only having primary insurance coverage whose lifetime maximum is met within a year or two.

That is the situation that thousands of parents in the state are facing right now. Until last year, these parents were able to receive Medicaid coverage as their secondary insurance through the Katie Beckett Waiver program, which was established in 1982. This waiver allowed parents of special needs children with permanent disabilities to receive care at home instead of being institutionalized, and receive coverage even though they make too much money to normally qualify for Medicaid.

Katie Beckett has been so important in the lives of families with special needs children because the monthly co-pays for doctor�s appointments, hospital visits, and prescription medicine alone can run in the thousands. In addition, there are countless out-of-pocket expenses every month that nothing will cover, not even Medicaid.

Heidi Moore, mother of six-year-old Jacob, who has Down Syndrome, said that her son has had ten surgeries and 29 procedures in his young life, and without Katie Beckett as their secondary insurance, her family would have gone bankrupt the first year of his life. Their out-of-pocket expenses each month run over $1,000, and the surgeries and procedures are astronomical.

The problems began last year when the state realized that it was not properly enforcing the criteria for those receiving the waiver. To correct the problem, the state actually enforced the guidelines too strictly and began denying children that had been receiving Medicaid and obviously needed the coverage. Families are required to reapply and qualify for coverage every year, and there have been over 1,600 denials since May 2005.

Moore knows of countless families whose children have been denied unjustly. One particular example is a young girl that is on a feeding tube, is blind and deaf, has cerebral palsy, and is in a wheelchair among other things, and yet she was denied when her family reapplied under the newly enforced guidelines. Her family later appealed the decision and was accepted, but as Moore said, �She should not have been denied to begin with.�

Now, through the work of parent groups such as Moore�s Grassroots Advocacy, the state is reviewing its criteria for receiving the Katie Beckett waiver and plans to make changes to allow more children back under the coverage that they need. However, until those criteria are announced, the families have no way of knowing who will be accepted, and they will continue to struggle from day to day to provide for their children with special needs.

On January 19, over 130 parents and advocates went to the state Capitol for the Katie Beckett Waiver Public Hearing. Several parents presented their stories and information to the legislators to request changes to the current system. A little over a week ago, the State Senate passed an amendment to allow for an additional $3.6 million to the Supplemental 2006 budget for families that do not qualify for the waiver under the criteria that have been changed.

This amendment will now have to go to the House for approval, and it only applies through June 30, 2006. Although Moore said she was very excited about the news of the amendment, �there are still a multitude of issues that need to be resolved involving the eligibility criteria and those serving on the application committee. It�s hard enough to raise a special needs child without having to deal with insurmountable medical bills, and this is truly a dire situation for the families affected.�

Nikki Johnson-Duffell is the mother of Wright, who is four years old and was born with a chromosomal deletion. He has been receiving Medicaid through the Katie Beckett waiver since he was six months old. Duffell has already sent in Wright�s application to again receiving Medicaid this year, but has yet to hear back. She said, �I am praying that his re-application will be approved. I can�t imagine how we will continue to provide him the level of care he needs without Katie Beckett.�

Kimberly Frey, mother of Ellie, is one of the parents in the area who has not had a good experience with the waiver. Ellie has been in the ECHO recently due to the family�s need for financial support from the community. Ellie needs a kidney transplant within a year, and the Frey family has no insurance.

After nine months of applying and waiting, Frey received word that Ellie had been accepted to receive the Katie Beckett waiver. Then, Duffell called Frey to inform her that the criteria guidelines had been changed, and both their children were in danger of losing their coverage because the children are not �wheelchair-bound� and do not need a nurse at their side 24/7. Frey discovered a few weeks later that Ellie had indeed been taken off Medicaid and moved to PeachCare for Kids without any notice. Frey has since called to inquire about the waiver and why Ellie was taken off, and she has not received any information about anything.

Katie Beckett was designed to support families and children with special needs in order to build success in the future. Moore said that she and all the other advocates only ask that the state help their children achieve success by providing them with the financial help they need. She encourages all families with special needs children to contact their State Senators and Representatives and inform them of their situation.

Moore stresses that the majority of waiver families are �hardworking, middle class, taxpaying, voting citizens that never asked anything from the state until they had a child with a disability.� For more information on Katie Beckett and the advocacy program, contact Moore at heidijmoore@comcast.net.

--
Heidi J. Moore
(Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old)

"Help The Children Now, So They Can Help Themselves Later!"

The material contained in this e-mail is for general information only. It
is not intended in any way to provide or offer legal advice. To obtain
legal advice, please consult with your attorney or a qualified legal
representative.

Dearest Advocates:

AJC had another great article on front page of the Metro section today. Please take a moment and thank the AJC reporter, Patricia Guthrie for her on-going coverage of the Katie Beckett Waiver situation (pguthrie@ajc.com). Also take a moment to write the editor to let him know how much we appreciate the AJC�s on-going coverage of this important issue (letters@ajc.com).

This type of media coverage is what we needed....... Like I said before, most of our families are hard working middle income, tax paying, voting citizens that need a little help from the State for their special needs children. Only through educating and building awareness in the community, working with our legislators and Governor are we going to be able to make a difference in this difficult time for the Katie Beckett Waiver children/families.

Sincerely, Heidi

Here is the article:

Restoration of kids' Medicaid funds up in air

By PATRICIA GUTHRIE
The Atlanta Journal-Constitution
Published on: 02/20/06

Lawmakers and state officials still are trying to figure out how to help special needs children dropped from a state Medicaid program.

The state Senate last week included $3.6 million in the current year's state budget to help children cut from the so-called Katie Beckett Medicaid waiver program. The budget now goes to a committee of House and Senate members who will work out the differences between the two versions of the budget.

But officials with the state Department of Community Health, which administers the program, said it's too soon to say how they would use the money.

The department dropped hundreds of families from the program for disabled and medically fragile children after it tightened its eligibility rules in November 2004to match the federal government's.

Upset parents flooded lawmakers and the governor's office with complaints, saying their children were suffering because they couldn't afford the therapy and medication that previously had been covered.

The Katie Beckett waiver acts as supplemental insurance so families can care for severely ill and disabled children at home.

The $38 million program once covered about 6,000 children. An estimated 1,600 have been dropped or are appealing decisions.

Officials with the Department of Community Health say they are re-evaluating the eligibility rules to allow some children back into the program.

"There have been some changes to the criteria in interpretation with regard to autism and cystic fibrosis," said Julie Kerlin, department spokeswoman. Eligibility requirements also changed for some children born premature.

The changes don't mean that all children with those conditions are eligible, Kerlin said, because they still must meet many other requirements.

Additional money from the Legislature would allow the department to help more children, but officials aren't sure how many.

"We're grateful for the support, but we just have to figure out how to most efficiently use" the new funding, said Pat Nobbie of the Governor's Council on Developmental Disabilities, a federally funded advocacy group.

Numerous suggestions have been made for reinstating families, but a final decision isn't expected for weeks, Nobbie said.

Find this article at:
http://www.ajc.com/metro/content/metro/stories/0220metlegwaiver.html

--
Heidi J. Moore
(Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old)

"Help The Children Now, So They Can Help Themselves Later!"

The material contained in this e-mail is for general information only. It
is not intended in any way to provide or offer legal advice. To obtain
legal advice, please consult with your attorney or a qualified legal
representative.

July 19, 2006

Dearest Advocates:

As many of you have been aware, there has been a lot going on recently regarding proposed therapy changes and CMO problems in this State. A Dept. of Community Health (DCH) Board Meeting was held last week to discuss these concerns. I want to personally thank all the families and therapists that took time out of their busy schedule to testify. Based on responses of individuals that attended.....the DCH Board did listen to our concerns but we need to do more in order to impact change now!

PLEASE GET INVOLVED for our children�s future! Here is what I need for you to do:

Parents:

1. WE NEED YOU! DCH needs to hear from the families that will be affected by this change! (They just can't hear from the providers/therapists). Eventually, Medicaid will not be worth the paper it is written on.....if we can't find providers to perform the services necessary for our children!

Please send an e-mail to the entire DCH Board by going to the following website:

http://services.georgia.gov/esp/survey.do?surveyId=2330

(I recommend you type your comments in a Word document and then cut and paste into the form above. For those that don�t know how to cut and paste text�.All you have to do is highlight the text, push the �Control� button and �C�, then go into the above form and paste the information by pushing the �Control� button and �V�. Hope this helps. At least you can spell check your text in Word.)

Also: Please also send the same information to Dr. Rhonda Medows (rmedows@dch.state.ga.us). Dr. Medows is the Commissioner for DCH. We need to make sure the proper people understand and act on our concerns. If they don�t know there is a problem�.how can they fix it?

Here are some of the items that YOU can discuss in your e-mail:

1. Please stress that this is just an increase in paperwork for providers/therapists with very little value.

2. Stress that we are already going through major reviews for eligibility criteria for the programs, why do we need more paperwork? One of the questions on the DMA-6A form is if we receive 5 therapies/week��now they are stating that if you have that�.you will need prior authorizations. (Does this make sense?)

3. If we continue to increase the paperwork, cut rates, etc, we will no longer have therapists to provide the services to our children.

4. This is not a �cut� in therapy. It is a round about way to increase the paperwork, thus, making this more likely that therapists will not accept Medicaid children. This is a cost savings �tactic� from DCH. DCH says this is not a cut in services��.They say if the proper paperwork is in place, your child will receive the services!

5. Let them know that it is getting harder and harder to find providers!

6. Parents should NOT be made responsible for keeping track of the proposed 16 units of combined therapy (PT/ST/OT). This should NEVER be implemented and is too hard to keep track of.

7. For CMO children: IEP�s are not a reflection of the child�s entire day nor what the child needs in his/her community and home environment. Many times schools are VERY limited on how much therapy they will give you in that setting (even if the child needs more).

8. We want to understand the cost savings they are projecting to implement this new system at what expense to children/therapists/families.

Therapists:

1. See items # 1-8 above.

2. Also- if you are a therapist that is considering not accepting Medicaid due to these change (or have already decided to no longer accept Medicaid) - please state this in your e-mail. DCH needs to hear that we are reducing the number of providers in this State.....therefore, making it more difficult for families to find services that are provided by Medicaid!

3. If you are not already involved, please consider getting involved with your PT/ST/OT organization. Also consider getting involved with the Trialliance. They have been very involved in helping communicate and negotiate these issues with DCH.

Here is a summary of the 7/13/06 DCH Board meeting for your review (many thanks to Donna for giving me much of this information since I was unable to attend):

1. Prior Authorization changes: The Board definitely heard our concerns and assured us that they do not want children to have a �break� in services while they wait for a prior approval. Concerns continue with the proposed 16 units of combined therapy stating that this would be a huge burden for parents to keep track of. We need to make sure this is NOT implemented.

2. Medical Necessity: Who determines medical necessity for therapy will be an issue. Unfortunately, we will not know how this is going to pan out until they start making decisions related to prior approvals.

3. CMO re: IEP�s. Dr. Medows was surprised to hear that children were still being denied services because they should be getting these from the school. She stated that this was not to occur, although therapists received a new letter from Wellcare on Friday still requesting information regarding treatment in the schools.

4. CMO contract and payment delays DCH is aware of all of these issues. If a clean claim is not paid in 14 days, they should be paying therapist�s 15% interest.

5. Savings proposed by these measures: The Board asked Mark Trail how much he was going to save by instituting this model for therapy and he couldn�t say. The Trialliance had already asked him this question two months ago and he does not have a �plan� on where the 65 million dollars in cuts is going to come from. (Please note: therapy is a VERY SMALL part of the Medicaid budget and that the department should be looking at areas where there could be significant savings.)

Please take a minute to write your e-mails��UNITED�.WE WILL MAKE A DIFFERENCE!

That�s all I know for now. I will not have access to e-mail from July 20-23 (due to attending the National Down Syndrome Congress convention here in Atlanta). PLEASE do not e-mail your questions; this is all I know right now.

Keep you posted.

Sincerely,

Heidi

--
Heidi J. Moore
(Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old)

"Help The Children Now, So They Can Help Themselves Later!"

The material contained in this e-mail is for general information only. It
is not intended in any way to provide or offer legal advice. To obtain
legal advice, please consult with your attorney or a qualified legal
representative.

July 20, 2006

Dearest Advocates:

This is hot off the press...................FROM: the Dept. of Human Resources (DHR), the frequently asked questions for the transitional funding for the Katie Beckett Waiver! I'm VERY excited that DHR took such a positive step to actively communicate with the families that may be effected by this funding and even gave us a direct contact if questions come up!

I hope you can see that our advocating is paying off and DHR is listening and trying to make changes in their communication style. I know we still have a long way to go, but this is a step in the right direction.

If you have any questions regarding the below information, PLEASE contact Brian Dowd at DHR. He will be able to assist you. I was able to give the team that put this together my feedback prior to issuance. I realize that there are going to be families that were denied from May 05- Sept. 05 that will not receive this assistance. I was not aware of the October 05 begin date for assistance until months later. Hopefully, those families will be able to receive assistance after the Foundation is up and running.....

Hope you find this information helpful.

Sincerely,

Heidi

======================================================

DHR - FAQ

Transitional Funding for Katie Beckett Waiver (HB 1026)

Q: What is this transitional funding related to the Katie Becket Waiver?

A: During the 2005-2006 Legislative Session, $7.6 million dollars were allocated to help transition children and families who were removed from the Katie Beckett Waiver as of October 2005 or after as a result of re-alignment with the federal Katie Beckett (TEFRA) eligibility criteria.

This one-time allocation of funds is intended to help families purchase some limited assistance. Additionally, a portion of the funds is intended to provide resources for the establishment of a foundation to raise funds for assistance to families with children with disabilities.

Q: Who is eligible to receive the funding allocated by the Legislature?

A: Any child that was receiving services from the Katie Beckett Waiver program and was denied October 2005 or after due to a Level of Care (LOC) decision.

Q: What is Level of Care?

A: Level of care is one of the factors that determine whether a child is eligible for Katie Beckett Medicaid. Level of care for Katie Beckett Medicaid requires that the child need institutional (level of) care, such as a nursing home, if community-based care is not available.

Q: Who determined which children would be eligible for the transitional funding?

A: The Georgia Legislature determined who would be eligible, indicated by the language written in House Bill 1026 signed by Governor Perdue May 8, 2006.

�Add funds for the Katie Beckett waiver for families who don�t meet the new criteria used starting October 2005. This funding will be the sole funding for those families as they are not going to be eligible for Federal matching funds.� � Georgia HB 1026

Q: Who decided on the October 2005 date?

A: The Georgia Legislature determined the start date for eligibility in House Bill 1026 signed by Governor Perdue May 8, 2006.

�Add funds for the Katie Beckett waiver for families who don�t meet the new criteria used starting October 2005. This funding will be the sole funding for those families as they are not going to be eligible for Federal matching funds.� - Georgia HB 1026

NOTE: To view the full text, go to http://www.legis.state.ga.us/, select �Legislation�, and search for HB 1026.

Q: How can I find out if my child is eligible to receive the assistance provided by the transitional funding?

A: All children who were removed from the Katie Beckett Waiver after October 2005 will be screened by DHR-DFCS for eligibility. Parents will receive an option letter in the mail if their child is deemed eligible.

Q: How can parents check on their child�s eligibility for this assistance if they did not receive an option letter?

A: Parents who think they should have received an option letter and did not should contact Brian Dowd at 404-657-3592 or by email at bddowd@dhr.state.ga.us

Q: Will new applicants after October 2005 be eligible to receive the assistance?

A: No. New applicants who were denied after October 2005 are not eligible. Only children who had previously been receiving Katie Beckett and whose cases were closed after October 2005 are eligible.

Q: What about those cases closed prior to October 2005?

A: Children whose cases were closed prior to 10/05 are not eligible for the transitional funding.

Q: How will the assistance be provided to families?

A: Assistance will be provided after receipt of a signed election form that is included with the option letter indicating that the family wishes to participate and receive the transitional funding. A card will be issued to the family that is similar to a prepaid debit card. Instructions will be included with the card when mailed.

Q: When will families be able to use the card to access this assistance?

A: As soon as they receive the card.

Q: How much assistance will be provided?

A: A one-time amount of $2600.00 will be allotted for each eligible child.

Q: How much assistance will be provided if there are multiple eligible children in the same family?

A: Each child will receive $2,600, so a family that has 2 eligible children, for example, will receive a total funding of $5,200.

Q: What about eligible children that need more than $2600?

A: The limit per eligible child is $2,600 for this one-time financial assistance.

Q: What are the restrictions on the use of this assistance?

A: The funding can be used for any medically necessary service. In addition, the funding can be used to purchase respite care from participating non-Medicaid providers.

Q: What is meant by medically necessary service?

A: Specific billing instructions and guidelines will be provided with the card. The card will be able to be used for medical supplies, pharmacies, hearing aids, optical needs, and dental needs. It will be able to be used at hospitals, doctor�s offices, and medical labs.

Q: How is payment made to service providers that do not accept a debit card?

A: Paper claims can be submitted for medically necessary services. Instructions for reimbursement will be mailed with the card.

Q: Can I be reimbursed for service or equipment I�ve already paid for?

A: Yes. Services are covered retroactive to 4/1/06. So, a paper claim will need to be made with corresponding insurance explanation of benefits (EOB).

Q: What is the present status of this funding?

A: As of July 14^th 2006, 981 option letters have been mailed out to all children deemed eligible from the months of October 2005 to April 2006. Option letters for children eligible from May 2006 will be mailed out by 7/19/06. A computer generated report of children eligible from June 2006 is currently being produced.

Q: Does acceptance of this funding prohibit application for Medicaid benefits?

A: Acceptance of this funding in no way prohibits an individual�s right to make application for any benefits. If the child receiving this interim assistance becomes eligible for Medicaid the interim assistance will be cancelled.

Q: How does receipt of this assistance impact the hearing process?

A: If you are in the process of appeal and have continued your Medicaid benefits pending the appeal you are not currently eligible for the transitional funding.

If you have not continued benefits pending the appeal�s outcome you will receive an option letter to participate. If the hearing decision is in your favor and your Medicaid is reinstated, you will no longer be eligible for the funding. If your hearing decision is not in your favor and your Medicaid is closed, you will receive an option letter, funds permitting.

Q: I have heard that part of the transitional funding is being used to set up a foundation. What is the status of this foundation?

A: Planning for the foundation will begin in July 2006 with an anticipated completion date in spring 2007.

Q: What is the �foundation�?

A: A condition of the transitional funding requires DHR to provide resources for the establishment of an independent, community-based foundation to administer special assistance benefits to families of children with disabilities.

Q: Who will be involved in planning and developing the foundation?

A: The foundation development team will include families of children with disabilities, advocacy groups, Georgia legislators, as well as representatives from the Department of Community Health and DHR.

Q: Has the Community Foundation of Atlanta been selected as the home for the foundation?

A: No. DHR has contracted with The Community Foundation to provide technical assistance to the development team. Stakeholders on the development team will make decisions about the organizational home of the foundation.

Q: How much of the supplemental funding is being used to set up a foundation?

A: $2.4 million. This funding will be used to capitalize the foundation and ensure its ability to administer some financial benefit to families after the interim assistance has expired.

Q: Who will be eligible to receive assistance from the foundation once it�s established?

A: The foundation, under the guidance of the development team, will establish its own eligibility requirements.

Q: How can I apply for assistance from the foundation or get on the waiting list?

A: Currently, there is no application process or waiting list for the foundation. Once established, the foundation will create their application process.

--
Heidi J. Moore
(Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old)

"Help The Children Now, So They Can Help Themselves Later!"

The material contained in this e-mail is for general information only. It
is not intended in any way to provide or offer legal advice. To obtain
legal advice, please consult with your attorney or a qualified legal
representative.

July 26, 2006

Dearest Advocates:

I just wanted to let you know that our advocacy efforts are paying off....

As for as we know, Fox 5 will be airing tonight on their 10:00pm news a segment regarding the proposed therapy changes in prior approvals and other issues that will impact our children with disabilities in this State!

I hope you can see that we are continuing to get attention on this matter, as well as, the CMO situation! Keep up your letter writing to the Dept. of Community Health's Board......It's working!

Please take a moment and thank the reporter, Lisa Crane lisa.crane@foxtv.com for taking interest in the story and also send an email to feedback5@foxtv.com.

It takes a lot of energy and time in order to have these segments aired. I also want to thank Betsy for being willing to go on camera to state what a lot of therapists are experiencing and continue to educate the community on the issues our providers are experiencing with Medicaid right now (as well as parents!).

Only through building awareness of the situation (and in this case: working with the media), are we going to impact change in the State of Georgia!

Thanks in advance for writing your thank you's. Keep you posted.

Heidi

--
Heidi J. Moore
(Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 4 years old)

"Help The Children Now, So They Can Help Themselves Later!"

The material contained in this e-mail is for general information only. It
is not intended in any way to provide or offer legal advice. To obtain
legal advice, please consult with your attorney or a qualified legal
representative.

July 27, 2006

Dearest Advocates:

We need to step up our advocacy efforts with Dept of Community Health (DCH) now as timing is VERY sensitive. Based on my latest information, DCH is still planning on implementing the prior authorizations for therapy Sept. 1st (which means therapists will need to start submitting paperwork as soon as August 1st in order for children to continue services). OUR Legislators need to hear from US now on all the DCH proposed administrative changes, as well as, existing problems in the Medicaid system (CMO and BCW)!

There have been recent reports of a $580 million surplus, so we need to ask our Legislators and the Governor.....WHY is DCH trying to add more paperwork, when our children have already demonstrated the need for services (or we would not have qualified to begin with based on the more stringent eligibility criteria implemented in the last year)?

Due to the increase in paperwork, more and more providers are NOT accepting Medicaid. WE have to STOP the trend before it's too late .

Medicaid is not going to be worth the paper it's written on if we can't find providers for the services our children need in order to become active, productive, tax paying citizens in society. Like I said last night on FOX news, Therapy needs to be viewed as an investment in our children's future!

1. Please go to the following website (www.vote-smart.org) and in put your 5 digit zip code plus 4 digits (you can get that information from junk mail you receive if you don't know it) to find out who your State Senator/Representative is. Send a quick e-mail or call them and let them know how important these issues are to you personally.

2. Also: Contact Governor Sonny Perdue Georgia.Governor@gov.state.ga.us (He just needs to hear from us�..).

3. If you haven't already, Please take a moment and thank the reporter, Lisa Crane (lisa.crane@foxtv.com ) for taking interest in the story and also send an email to feedback5@foxtv.com . I was very impressed with the amount of depth FOX went into the story and how newsanchor Russ Spencer even endorsed how this proposal doesn't make sense to the children! THANKS to everyone that has already contacted FOX.

Also- please give FOX feedback and suggestions on other top ics they can air on in the future. (Note: I realize that the segment that aired last night was on the prior authorizations for therapy but I also took the opportunity to give the reporter information on the CMO situation. I know many of you also have concerns about what is happening in Babies Can't Wait and service coordinators positions. The only way they are going to know what stories to do is if they hear from US!).

We all need to get involved to help promote awareness of issues impacting children with disabilities!

I went ahead and copied my previous e-mail below to refresh your memory of the issues...............Hope this helps.

We are starting to get people's attention but need to keep up the effort.
Thanks in advance for your efforts. UNITED.... WE WILL MAKE A DIFFERENCE!

Sincerely, Heidi
==================================================