April 16, 2007

 

Dearest Advocates:

 

Please find below additional information regarding our advocacy efforts. MANY thanks to those 25 families/kids/providers/concerned citizens (and even a grandma!) that took time out of their busy schedules to come down to the Capitol today to show a unified voice on this issue.......The Aged, Blind and Disabled populations can NOT be in another managed care model!

 

The Senate listened and took this proposal OUT of their version of the 2008 Budget!

 

BUT our advocacy efforts must continue........PLEASE take a moment and call and/or email the below legislators (ESPECIALLY if you are in their District. It means more when you live in their district!!!!!) and the Governor letting them know that managed care does not work in this population of individuals and why. 

 

Please make your stories personal and how it could impact your family. Also thank the Senators for taking it out of their version of the budget and help the our House of Representatives understand better so they will support that final decision with the 08 Budget!

 

To help you with your phone calls and emails, below are some of the facts to the situation..........

 

Facts:

 

Many of our families already have a managed healthcare network! With the Katie Beckett Waiver children alone, 71% of those waivers use Medicaid as SECONDARY INSURANCE and have primary healthcare insurance.  Why would we need to be in ANOTHER managed care situation?

 

For the other Waivers (including MRWP, SOURCE, ICWP, CCSP, etc) - They are already in a managed care model.  

 

There needs to be a lot more thought and input into this option before adding into the budget at the last minute.  No study data is available at this time. We don’t even know how many individuals this could impact!  

 

This plan was not discussed in any public meetings and was NOT recommended by the Appropriation Health Subcommittee and Dept. of Community Health (DCH)!  DCH Commissioner Medows says the plan is premature because the State has less than a year’s experience with the current managed care (CMO) model in place.

 

DCH would have to get a 1115 Waiver from the Federal Medicaid office even if this is approved by the Georgia legislator (which takes time).

 

Given the complexity and needs of this vulnerable population, many who have private health insurance and hold Medicaid as secondary insurance, the cost of coordinating care would be a financial burden to Medicaid and could actually end up costing the State more taxpayer dollars!

Bottom line: Managed care is NOT a good service delivery model for the Age, Blind and Disabled populations and could actually cost the state taxpayers more money.  We need more time to evaluate the options before this radical approach is taken. Please remove this line item from the 2008 Budget!

Thanks in advance for your support.

 

UNITED... WE WILL MAKE A DIFFERENCE!

 

Our advocacy efforts are paying off...keep up the GREAT WORK!

 

Sincerely, Heidi

 

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

 Laura O. Moore

Founder and CEO

Dream House for Medically Fragile Children, Inc.

laura.moore@dreamhouseforkids.net

770-717-7410

Leanne D. Manning

Project & Advocacy Coordinator

leanne.manning@dreamhouseforkids.org

678-462-7789

Heidi J. Moore

heidijmoore@comcast.net

678-357-8200

YOUR VOICE WAS HEARD!!!

Dream House Call to Action Update

United…We are making a difference!!!

Our state leaders heard from you today, your phone calls and emails made the difference and the Senate did not approve the last minute amendment that would implement a managed care program for the Aged, Blind and Disabled Medicaid population in the Atlanta region, which is said to become effective January 1, 2008.

We have one more thing to do…

The House and Senate Committees will now need to work out their differences on this issue,

So we still need to call and email our legislatures,

Especially tomorrow, Tuesday, April 17! 

Please voice your concern about this rush of putting the aged, disabled and blind into care management.  We would like to have the study data used to validate how many aged, blind and disabled people this change would affect made public and given time to review that data; to learn about how much money this change would actually save or cost, both long and short term; and to be able to participate in timely public response before this change is implemented into legislation.

We do not want the state budget balanced upon the health and lives

 of children or elderly folks, disabled, or blind people.

But what can I do that  will make a difference?

1.      Please call and email your state legislature on Tuesday!! You can find your State Senator and Representative by going to www.vote-smart.org and typing in your zipcode.

2.      Please call Governor Sonny Purdue’s office at 404-656-1776, or FAX: 404-657-7332 or email: sperdue@gov.state.ga.us.

3. Contact Lt. Gov. Casey Cagle’s office at 404-656-5109 or email him at: http://ltgov.georgia.gov/00/article/0,2086,2199618_2208307_11792200,00.html  

4. Contact Senator Jack Hill at 404-656-5038 or jack.hill@senate.ga.gov

5. Contact Senator Tommie Williams at 404-656-0089 or tommie.williams@senate.ga.gov or tommie@tommiewilliams.com

6. Contact Senator Eric Johnson at 404-656-5109 or  eric.johnson@senate.ga.gov or ejohnson56@comcast.net 

7. Representative Ben Harbin at 404-463-2247 or  ben.harbin@house.ga.gov

8. Rep. Jerry Keen 404-656-5052 jlkeen@bellsouth.net

9. Rep. Mark Burkhalter 404-656-5072 or  mark.burkhalter@house.ga.gov

Dream House for Medically Fragile Children, Inc. provides education, skills training, and assistance with healthcare equipment acquisition and resource referrals, so that kinship, foster, and adoptive families can care for medically fragile children in their own 'dream home'.

###

 

April 14, 2007

 

Dearest Advocates:

 

URGENT! Please see below a call to action regarding the latest proposal to place the Aged, Blind and Disabled populations to a managed care program.  I realize that this is late notice. Things are moving VERY quickly but we all need to get involved now! 

 

We are asking anyone that can to come to the Capitol this Monday, April 16th at 10:30am and hand deliver your message to the necessary Senators.  The plan at this point is to meet at the front stairs of the Capitol on Washington Street side (where we had our Healthcare for Kids Rally in November) and organize from there. If you have any questions about this call to action, please contact Leanne Manning  at leanne.manning@dreamhouseforkids.org.

 

If you can't participate on Monday, please make your phone calls and emails!  Senators that need to hear from us including the following:

 

 

 

April 8, 2007

 

Dearest Advocates:

 

Thought you might be interested in the below articles in the Effingham Herald Newspaper. As I stated before, we need to see more articles in the media on what the real issues are and the need for additional supports for our children and adults with disabilities to succeed in life and in the community they live!

 

Here is the link for the third part of the series:

 

 

Please take a moment to thank Ralna Pearson rpearson@effinghamherald.net the reporter that wrote a three part series on the movement of moving individuals with disabilities from the institutions and into homes in the community.

 

Also- Many thanks to Lynnette Bragg for opening her heart and life into the media to help them better understand the needs of individuals with disabilities. Her advocacy efforts over the years is amazing and she continues to not only help her son, but thousands of others.  Lynnette started B&B Care Services in 1999. B&B provides supports for the elderly and individuals with disabilities in their homes and community. Currently, B&B is one of two Medicaid service providers that accept MRWP waiver in the Metro Atlanta area. 

 

I personally believe in this company and what it wants to become for our children in the future.  FYI.....In late January, I accepted a part time position as Community Relations Manager to help in the growth, development and support of families in the Metro Atlanta area for B&B Care Services.

 

Happy Reading! Heidi

---------------------------------------------------------------------

Here is the Second part of the series (that is no longer on the Effingham Heralds's website):

 

At home, at last  

By Ralna Pearson

This is the second in a series that will  examine the movement to move
mentally challenged individuals  out of institutions and into homes in the
community. 

Lying in his recliner with a big smile on his face and  watching “Wheel of
Fortune,” Scott Bragg is as content as can  be.

“He's truly the king of his own castle, said his  mother, Lynette Bragg.
His days begin with breakfast  and he’ll tell you what that will be. Then he
progresses into  a television marathon that mainly centers on the CBS network.
It’s “Good Morning America” then “Regis & Kelly” in the  morning, followed
by the “Price is Right,” WTOCs News at  Noon” and soap operas his
caregivers got him into.

In  the afternoons, it’s the evening news, “Jeopardy” and the 
aforementioned big wheel game show.

“Used to be and  so metimes now he’ll guess ‘em and we couldn’t figure out
how  he could do it till we realized they were reruns,” Bragg  laughed.

He has the channel turned to see his other  favorite show, “Judge Mathis,”
because of all the drama that  takes place on it.

“He likes the excitement,” said his  caregiver, Jerri Sutton.

“It gets monotonous around  here; we change it to the good stuff.”

His grandfather  and caregiver Homer Wells added, “He likes a fuss.”

At  3 years old, Scott, now 32, was diagnosed with mental  retardation.

“We always knew he was never like other  children,” his mother said.

He also suffers from autism  and five seizure disorders. Throughout his life,
he has broken  several bones, so he does not walk.

Bragg, a registered  nurse and advocate for those with disabilities, was
confronted  with the challenge of caring for a child with n eeds her rural 
Georgia
community did not provide services for.

“We  know intense therapies can make a difference early on, where  Scott did
not have the benefit of early on,” she said. 

However, she did have the support of a loving family  to help with Scott’s
care. Her parents, Shirley and Homer  Wells, kept him during the week while she
and her husband had  him on the weekends.

“He would kinda swap back and  forth,” Bragg said.

Group home a new  home
In 1984 Bragg and her father experienced some  health problems, and she was
forced to place Scott in a group  home near Atlanta until they got better.

For one year  while at the home, Scott would come home for 10 days and spend 
three weeks at the home. His family called him every  night.

While there, Scott attended school. He also  picked up some lessons outside
of the curriculum. < BR>
“One  thing he learned at the group home is how to fight,” shared  Bragg.

He returned home fighting and screaming. His  family had to re-teach him how
to use his words  instead.

Yet the most powerful thing he brought back  was unforgiveness.

For four years, Scott did not show  any affection toward his mom, refusing
even to sit beside her  because he blamed her for placing him in the  facility.

Bragg said that if she and her family had  been able to get in-home support
for Scott, they would not  have had to place him in the group home.

Today,  however, all is well.

Scott lives in his own home  right beside his parents’ house. He requires
care 24 hours a  day, which his grandfather provides in part. The renowned 
research plant pathologist retired so that he could care for  Scott full-time.

In addition, Scott has a caregiver w ho  comes every day to help care for him
who is paid through  Medicaid’s Mental Retardation Waiver Program. And the
Braggs  provide some of his care directly or through private  care.

Truly king of the castle
At  his home one afternoon Scott demonstrated that he really is  the king of
his castle.

“If he ain’t happy, ain’t  nobody happy,” noted Sutton, who has been caring
for Scott for  six years.

“What does Miss Jerri do?” Bragg asked her  son.

“Sleep,” he innocently replied in a deep, husky  voice as everyone burst out
in laughter.
“He’s telling the  truth,” Sutton answered back with a smile.

Scott’s  family has been active in caring for him all his life, but his 
biggest cheerleader was his late younger brother,  Matthew.

“He was his brother’s strongest advocate,”  shared Bragg.

Despite being eight years younger,  Matth ew taught his brother how to talk,
play and have  relationships. He even encouraged his parents to open B&B  Care
Services, Inc. to help provide needed services to Scott  and others with
special needs.

They started the company  in 1999 and today it is in 111 Georgia counties. It
provides  supports to the elderly and those with disabilities in their 
homes. And if they lack a home environment, the company helps  them find one.

In February 2001 two days before his  18th birthday, Matthew was killed right
down the road from his  home in a car accident. Three months later, Bragg’s
mother  died.

“Scott had a double whammy there with losing both  of them within a short
span of time,” Bragg said. “He lost his  two strongest advocates there and the
rest of us had to kick  it up a notch ... or two or three notches.”

Matthew’s  death also spurred the Bra g gs into ad vocacy work for disabled 
Georgians.

“We had gotten comfortable in knowing that  Matthew would make sure that
Scott was cared for,” Bragg said.  “And the day that (Matthew’s death) happened,
we realized that  we had to jack up our efforts in helping Georgia provide a 
system that would support Scott.”

Providing for  his future
In addition to the care they provide  now to their son, Bragg and her husband
also have planned for  when Scott no longer has them to rely upon.

Within the  same week Matthew was killed they met with attorneys and 
established a supplemental needs trust for Scott, which allows  money and
property to
be placed in a trust.

The Braggs  have named seven individuals to implement it. They will help 
Scott make decisions about where he lives, who provides his  supports and how
the
resources will be used to con ti nu e his&nbs p; lifestyle, according to Bragg.

Some of the trustees  are family, while others are friends. They are
educators,  financial officers, nurses and social workers.

Anyone  can establish a supplemental needs trust for their loved one. 

Bragg strongly encourages families to consider doing  so. Likewise, she
advises families to make sure their disabled  relative has a legal guardian with
their best interest at  heart and not the state.

She is Scott’s legal guardian  and in the event of her passing, her husband
or grandfather  will petition the court for guardianship to make sure that a 
loved one maintains guardianship.

“It’s very important  to protect people,” Bragg advised.

In the meantime,  Scott spends his days happily and freely thanks to the 
sacrifices and hard work his family has put forth to make that  possible.
--
Heidi J. Moore
(Proud Mother to Jacob - 7 years old with Down syndrome & Jared - 5 years old)

For more information about how you can get involved regarding advocating for children, please visit us at www.kidshealthcarega.org

"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 6, 2007

 

Dearest Advocates:

 

Educational Seminar for Special Needs Families

 

SPECIAL NEEDS CONFERENCE -- Kennesaw, GA - - On Saturday, March 31 from 10:00 a.m. - 12:30 p.m. at NorthStar Church in Acworth/ Kennesaw, Ga.

This educational event is designed for parents and families of special needs children, as well as anyone interested in learning more about Autistic Spectrum Disorders (ADHD, ADD, Aspergers Syndrome, Autism, Pervasive Developmental Disorder, Non Verbal Learning Disorder and more).

The conference will feature an expert physician panel, including:

Amy Thornhill Pakula, MD - Dr. Pakula is a Neurodevelopmental Pediatrician and Director of Developmental Pediatric Clinics at the Marcus Institute. She specializes in early identification of, intervention for, developmental and behavioral problems in children during infancy and the pre-school years.

Cobb County Schools Parent Mentors - The parent mentors can help educate on what the school system has to offer special needs children.

Stephanie Pretti, OTR/L - Ms. Pretti, Occupational Therapist, Children's Healthcare of Atlanta Rehabilitation Services. 

Deborah Matthews McCormick, MS., NCC, LPC - Mrs. McCormick is a licensed counselor with experience in helping both children and their families.

The panel will discuss the diagnosis, treatment (pharmacologic and non-pharmacologic), education and expected outcomes for children and will conduct a question and answer segment with parents and families.

Online reservations are available at northstarchurch.org.  Paper registration forms may be printed online. Please contact Jeff Hardin at 678-427-5380 or Tricia Levy at 404-245-2870 for more details.

There is no cost for the seminar, and childcare is available by reservation only. 

NorthStar Church is located at 3413 Blue Springs Road, Kennesaw, GA 30144.  Office phone is (770) 420-9808.  Directions to NorthStar Church’s campus and offices can be found at www.northstarchurch.org/directions.shtml. =================================================

The following is a message from Stephanie Moss, Part C Coordinator, Babies Can't Wait.  

We need to hear from you!  The Babies Can't Wait program, Georgia’s early intervention system for infants and toddlers (birth to three) with disabilities and their families, needs your input to help improve our services for Georgia’s children and families.  
 
As part of this process we are conducting an online survey of our stakeholders, including families, service providers, our own staff, and our community partners, both public and private.
 
Our time frame is extremely tight.  The online survey will be available only Monday, March 5, 2007 through Friday, March 16, 2007 http://s urveybcw.caresolutions.com
 
Because of your work on the front lines, your input and assistance is critical.  We are asking you to participate in the survey yourself as well as help get the word out and encourage others in your community – families, service providers, LICCs, school officials, child advocates, etc. – to participate.  Attached is a flyer you can email,  copy and distribute.  
 
Please be assured that all survey responses will remain anonymous – an independent consulting firm will collect and analyze the data and provide the BCW with summary reports.

Thank you in advance for your participation and your help in getting others to participate!

 

(Heidi’s Comments: Even if your child is out of the BCW program, please take a moment to fill out this survey. BCW needs to hear from EVERYONE in order to continue to provide services to families from birth to 3 yrs old.)

 

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

The following is a message from Susanna Mitchell with the Governor's Council on Developmental Disabilities:

 

Please visit http://www.surveymonkey.com/s.asp?u=181193386114 to complete a brief survey on Disability Day at the Capitol 2007.  The survey will be available until Friday, March 9. 

 

Thank you everyone who already completed the survey.  We appreciate your feedback!

 

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