http://www.lgtinc.org en-us http://www.lgtinc.org N/A contact@lgtinc.org Sat, 04 Feb 2012 05:56:15 EST 20 http://www.lgtinc.org/articles/236/1/Advocacy-%26-Medicaid-Information-from-Heidi-Moore May 1, 2007   Dearest Advocates:   A few weeks ago I gave a presentation to the Down Syndrome Association of Atlanta that I thought might be helpful to you.  The presentation has years worth of information in it thanks to many people that have worked with me on my advocacy efforts and trying to better understand the system  in order to help my family and thousands of others.    Please remember: I am just an informed parent and not an attorney. If you need legal advice, please contact an attorney. This information should be used for general information only!    In addition, starting the first of the year, I started a consulting business to help families with the Katie Beckett/Deeming Waiver and MRWP application process (as well as education and other advocacy issues for their child)  based on all the experience I have learned in the last 4 yrs of advocating for families and working with DCH/DHR and other non-profit organizations.  If you are interested in this service, please let me know.      In addition this year,  I started working part-time for B&B Care Services, Inc as their Community Relations Manager. For those that don't know- B&B Care Services, they help to provide services to families under the Mental Retardation Waiver Program (MRWP),Independent Care Waiver Program, Community Care Services Program and the SOURCE Program throughout the State of Georgia. Please let me know if you have any questions regarding this company and how I can help you with getting those services via B&B Care Services, Inc.   I must warn you....this is a very long email and you may want to print it out for future reference.   Hope you find this information helpful!   In addition, if you would like to see my previous advocacy email postings, please go to the following website: http://www.lgtinc.org/authors/41/Heidi-J.-Moore?Page=9   United... We WILL Make a Difference! Sincerely, Heidi ============================================ Medicaid Waivers and AdvocacyYour Child Needs YOU! Heidi J. Moore   Parent Advocate for Children and Adults with Disabilities   Proud Mother to Jacob- 7 yrs old with Down syndrome and Jared - 5 yrs old   The material contained in this presentation 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 qualified legal representative.   Agenda •Medicaid - Waivers and Supports. •Tips and Traps. •Networking and Building Alliances. •Advocacy •General Information - Things you should know!   Medicaid  Medicaid is a federal entitlement program of medical assistance for people of low-income who are: •Age 65 and older; •Blind or have other disabilities; •Children; •Pregnant women; •and families with children.   Medicaid Basics •Funding for Medicaid comes from both state and federal dollars. •Each state's Medicaid program is unique. (must be in compliance with federal guidelines.) Medicaid Eligibility •Individual must meet both "categorical" and "financial" requirements. •In Georgia, the following categories of people are eligible for Medicaid: •Parents and children, •Pregnant women and infants, •Children through age 18, and •The aged, blind and disabled   •In Georgia, SSI recipients are  automatically eligible for Medicaid.   What is the Katie Beckett / Deeming Waiver ? •Category for Medicaid eligibility based on the Tax Equity & Fiscal Responsibility Act (TEFRA) 1982. •State's are allowed to make Medicaid available to a child with a disability if: -18yrs old or younger, AND -Meet federal criteria for childhood disability, AND -Meet institutional Level of Care, AND -Can safely be served at home, AND -Cost does not exceed the applicable institutional cost.   What is the KB Waiver criteria based on? •Federal Regulations established general requirements in 42CFR 435.225. -Requires institutional level of care: nursing home, hospital, or intermediate care facility- mental retardation.   1. Intermediate Care Facility - Mental Retardation - 442CFR440.150 & 42CFR483.440 •Requires 24 hour supervision AND active treatment. 2. Hospital Level of Care - 42CFR440.10 •Georgia uses Interqual. 3. Nursing Home LOC - 42CFR440.155 •DHR Rules 290-5-8 & OCGA 31-7-1(1)(b). •Requires 24 hour nursing care.   Background on Katie Beckett-Deeming Waiver for Georgia •KB Waiver was created to waive income limits of parents to establish eligibility for Medicaid in 1982. •This is an optional Medicaid Program for Georgia. •In 2001, the only national study ever conducted concluded that 20 states enrolled approximately 25,000 children in Medicaid through the KB waiver option. Georgia was the second highest ranked State for KB waivers. •Increase in KB Waiver denials since May 2005. No specific disability has been targeted. •Over 6,200 families had the KB waiver before the new guidelines were implemented on 11/15/04. Over 2,400 children have been denied since that time.   How is the Level of Care determined for the KB Waiver? •Initial application made to DFCS. -Clinical detail is sent to and reviewed by Georgia Medical Care Foundation. -If Level of Care is satisfied, DFCS does cost neutrality assessment. •Georgia Medical Care Foundation does clinical review. -A certified Prospective Review Organization. -Co-Medical Directors and nurse reviewers.   What is the Appeal process for KB Waiver? •An  initial administrative appeal can be requested from GMCF. You have 30 calendar days to supply additional information. •A 2nd appeal can be made by requesting a hearing directly from the DCH. (Fair hearing in front of a judge) •As of 1/17/07, DCH is currently conducting fair hearings for January 2006 requests! DCH has limited any patient liability to 3 months, should the hearing not turn out in the parents favor.   Appealing…..Tips & Traps •Tips for Appealing: -In the original denial letter, the parents have 30 Calendar days to appeal. -Resubmit any Medicaid documents that you feel you may have not filled out properly based on the new eligibility criteria. -Prepare a 24 hour Care Plan going into detail about your child's day. Explain everything you do as a parent that goes beyond a "typical" child's duties as a parent. -Have all your doctors, therapists and any other professional that works with  you child submit a letter explaining why your child needs the waiver. -Contact your local State Senator and Representative and send copies of e-mails to the Governor. -Detailed information on the procedural aspects of a fair hearing and instructional video on representing yourself in a hearing without an attorney can be found at: www.osah.ga.gov/   Tips and Traps •Review the eligibility criteria by going to www.communityhealth.state.ga.us or http://dch.georgia.gov/00/channel_title/0,2094,31446711_31946814,00.html   •All applications have new forms which include the following: -Pediatric DMA6(A). -Care Plan (DMA 706). -Cost-Effectiveness Form (DMA 704 which replaced the Deeming waiver Physicians Referral Form). -3rd Party Liability Health Insurance Info. Questionnaire (DMA 285).   Tips and Traps •Fill out all forms out as a "Provider" NOT as a "Parent". •Always send everything to GA Healthcare Partners / DCH by certified mail / return receipt. •#1 Reason for denials is an administrative denial (lack of paperwork and incomplete package). •Submit ALL the forms and supporting documentation in one application. •Put together a Table and Contents and tab each document. •Question #7 on DMA6(A) "Does guardian think the applicant should be institutionalized? Yes or No".  •Don't date the DMA6(A) until submitting the entire application package. (Form only good for 30 days!) •Include a picture of your child. Make it personal!   Home and Community Based Service Waivers •Section 1915c of the Social Security Act allows the federal government to "waive" (ignore) certain Medicaid rules to enable states to cover home and community-based services as an alternative to institutionalization. •These are called Home and Community Based Service Waivers.   Service Waivers "Waive" Medicaid policies that require institutionalization of an individual before non-medical services can be provided.   •This allows states to offer programs that provide additional services to Medicaid eligible individuals in their home and/or community.               Georgia's Service Waiver Programs •CCSP (Community Care Services Program) •ICWP (Independent Care Waiver Program) •CHSS (Community Habilitation Support Services) •MRWP (Mental Retardation Waiver Program)   Community Care Services ProgramThe Community Care Services Waiver (CCSP) is for the elderly with disabling conditions and people with severe physical disabilities who need in-home support services.             To apply:  CCSP Intake Unit (Atlanta Regional Commission)  (404) 463-3244 www.agewiseconnection.com             Eligibility: Must have a functional impairment. • Require nursing home level of care • Medicaid eligible • Any age             May include cost share which is determined by individual's monthly income Resource limit.  Individual may have up to $2,000 in resources.              Provides Adult Day Health • Personal Support Services • Out of Home respite care • Home delivered meals • Home delivered services, e.g. nursing, PT, OT, ST • Alternative Living Services • Emergency response services   Independent Care Waiver Program The ICWP is for adults between ages 21 and 64, with physical disabilities or traumatic brain injury.   •Individuals must be able to direct their own care. Must be at risk of nursing home or hospital placement.   •Services include: case management, companion services, including homemaker services, personal support services, environmental modification, skilled nursing, specialized medical equipment and supplies, personal emergency response systems,  counseling, occupational therapy, adult day services, respite care,  physical therapy, and speech therapy.   Community Habilitation Support Services   §        This waiver program was created to serve individuals in institutional settings to facilitate their move back into the community. §        Individuals are not being added to this program. §        Individuals must be Medicaid eligible; have mental retardation since birth or before age 18, or another developmental disability since birth or before age 22, which requires services similar to those needed by people with mental retardation. §        Services are residential supports, day habilitation and supported employment.     Mental Retardation Waiver ProgramThe MRWP provides a wide array of community based services to individuals with developmental disabilities.   To be eligible for an MRWP, an individual must: •be Medicaid eligible; •Have mental retardation or another developmental disability which requires services similar to those needed by people with mental retardation; •Be at risk for going into an institution for people with mental retardation if unable to get the services you need in the community. The MRWP is available to all ages.   MRWP Services •Natural Support Enhancements •Respite Care •Specialized Services •Medical Equipment •Personal Support •Day Support •Day Habilitation •Supported Employment •Home Modifications •Support Coordination •Residential Training and Supervision   Support Coordination •Support coordination is a separate State contract- it does not use an individual's waiver money. •Support Coordination is for those on the Short Term Planning List and for those enrolled in the program. •The regional office contracts for support coordination.   MRWP +The largest service waiver program in Georgia.             +The largest waiting list for services (over 6,000 people statewide)   +Georgia has had this waiver since 1989.   MHDDAD Regional Offices Region 1: (706) 802-5272 or toll-free 1-800-646-7221.   Region 2: (706) 792-7733 or toll-free 1-866-380-4835.   Region 3: (770) 414-3052. Clayton, Cherokee, Cobb, DeKalb, Douglas, Fayette, Fulton, Gwinnett, Henry and Rockdale   Region 4: (229) 225-5099.   Region 5: (912) 303-1670 or toll-free 1-800-348-3503.   NOW Waiver will likely replace MRWP on 7/07 •Behavioral support up to $2,460 max a year •Community access •Community Guide services up to $ 2000 max a year •Community living support •Community residential •Dental services for adults up to $ 500 a year •Environmental accessibility adaptations up to $ 10,000 lifetime •Financial support services •Natural support training and individual directed goods and services •Professional therapeutic services up to $ 1800 a year •Respite •Specialized medical equipment and supplies •Support coordination •Transportation up to $ 2800 a year •Vehicle adaptation up to $ 6,240 max lifetime cap   Medicaid Covered Services •GAPP (Georgia Pediatric Program) •SOURCE (Service Options Using Resources in Community Environments)   The above are services (not waivers) covered under Medicaid.   Things to Know…. For those who already have a waiver •Individuals who have a Medicaid waiver are entitled to ALL the necessary services provided in that waiver program. •Waivers can be used anywhere in the state of Georgia but cannot be transferred out-of-state.   For those who are waiting for a waiver. •Parents and family members need to advocate for services.    Networking & Building Alliances •Contact Governor's Council on Developmental Disabilities (GCDD) via e-mail (vmsuber@dhr.state.ga.us) regarding being placed on their "Moving Forward" e-mail update during the legislative session. •Contact your State Senator and Representative's by going to www.vote-smart.org and inputting your zip code.  They need to hear from you about your situation and how it impacts your family. •Contact Governor Perdue:  Georgia.Governor@gov.state.ga.us .   Networking & Building Alliances •Stress when talking to your legislators that the majority of the our families are hardworking, middle class, tax paying, voting citizens that have never asked from anything from the State until they had a child with a disability.   •Atlanta Alliance on Developmental Disabilities (AADD) is also involved in advocating for the disability waiting list. http://www.unlockthewaitinglists.com/   •Work with the media to get the message out and to help educate the general population of our concerns and abilities of our children (given the right resources)!   Networking   •Get Involved! Advocating is the key to success in getting the services we need for our children. Send on e-mail to : heidijmoore@comcast.net if you would like to be placed on my advocacy distribution list. (over 2,500+ members)   •My goal: Make the issues easy to understand and explain to advocates what they can do to influence change in this State.   •Additional information can be found at: -www.kidshealthcarega.org -http://www.lgtinc.org/authors/41/Heidi-J.-Moore   •Effective February 2007, Heidi now provides fee based consultation services for the Medicaid application process for the Katie Beckett Waiver and MRWP and other advocacy issues including education, healthcare and general information.  Please contact her for additional information.   More Helpful Website Information •GCDD guide to waivers :   http://www.openminds.com/indres/111306gawaivers.pdf •Summary of GA Medicaid waivers  :  http://www.unlockthewaitinglists.com/pdf/summaryofwaivers.pdf •Medicaid's Main ICF-MR page:          http://www.cms.hhs.gov/medicaid/icfmr/default.asp •Parent to Parent of GA KB Waiver Information: http://www.parenttoparentofga.org/roadmap/insurance/insurancedeemingcover.htm •Unlock The Waiting Lists website : •http://www.unlockthewaitinglists.com/  •ICF-MR level care and "persons with related conditions":             http://www.healthlaw.org/library.cfm?fa=download&resourceID=61843&appView=folder&print •Great site to find current lawsuits in other states re: disabilities: http://www.healthlaw.org/ •When you see a code w/  "CFR" go here to look it up.  Most healthcare is in title 42.  Medicaid's definitions are listed here.             http://www.gpoaccess.gov/cfr/retrieve.html •An appeals decision re: 24 active care vs. 24 supervision.  This is the court's breakdown of the fed regs and how they interpreted them.           http://www.state.in.us/judiciary/opinions/previous/archive/02280101.nhv.html •Autism Handbook http://www.usd.edu/cd/autism/Autism%20Handbook.pdf                                                                          Update : Strengthening Families of Children with Disabilities (SFCD)- KB Waiver Foundation. •In April 2006, the legislature approved $7.6 million to go towards families that have been denied from the KB waiver. •A foundation was formed to manage this process. (Community Foundation of Greater Atlanta-CFGA) •Eligibility: Families that were denied the Katie Beckett Waiver from Oct 2005 - to date. •One time prepaid debit card will be paid in the amount of $2,600/child expires March 31, 2007. •Funds are being set aside to address the long-term needs of medically fragile children and their families •Currently, DHR is finalizing the Advisory Committee members. •Contacts: Lita Ugarte- Program Officer- CGGA (404) 688-5525 and Brian Dowd with DHR bddowd@dhr.ga.gov 404-657-3592..   Advocacy Issues Therapy Issues- -Starting Sept. 1, 2006, Prior Authorizations are needed for more than 8 units/month for ST, PT, OT. -Starting Nov. 1, 2006, CHOA no longer accepts outpatients for therapy. -HB 549 - Defines "Medically Necessary Services" and being prescribed by Physician not defined by DCH. Also changes process and need for prior authorizations. Currently awaiting Governor's signature!   Other Advocacy Issues:   •Administrative Service Organization (ASO) coming in 2007 for all disability waivers. •SB 10 Voucher program for children with IEP's. Waiting Governor's signature. •Get involved and monitor your child's Medicaid card. -www.ghp.georgia.gov and request a password from GA Health Partnership to be able to track Medicaid charges to your child's account. -This is very important in order to verify and report problems. You can report a complaint via the website as well. -Only through education, accountability and communication are we going to be able to make a difference in the process.   Be Prepared, Advocate, and Win…… YOUR Child Depends on YOU! --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. Heidi J. Moore Tue, 01 May 2007 00:00:00 EDT http://www.lgtinc.org/articles/229/1/URGENT%3A-Managed-Care--Continued-Advocacy-Needed-By-YOU%21 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  ==================================================== THIS STATEMENT ISSUED BY:  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'. ###   --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. Heidi J. Moore Wed, 18 Apr 2007 00:00:00 EDT http://www.lgtinc.org/articles/228/1/URGENT%3A-Please-Forward%3A-Call-to-Action-for-Monday--April-16-at-10%3A30am 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:   1. Jack Hill, Chair of Appropriations jack.hill@senate.ga.gov, 404-656-5038   2. Greg Goggans, Vice Chair, appropriations, Health  drgg@alltel.net  or greg.goggans@senate.ga.gov  404-463-5263   3. Tommy Williams, Appropriations, tommie.williams@senate.ga.gov or tommie@tommiewilliams.com 404-656-0089   4. Casey Cagle, Lt. Governor, go to the following website to contact him: http://ltgov.georgia.gov/00/article/0,2086,2199618_2208307_11792200,00.html   or 404- 656-5030   5. Eric Johnson, Senate 1, President Pro-Tem, eric.johnson@senate.ga.gov or ejohnson56@comcast.net 404-656-5109   6. Also please contact your individual State Senator for your own district by going to www.vote-smart.org and typing in your zip code.      7. AND Contact Governor Perdue at sperdue@gov.state.ga.us, or 404-656-1776, Fax:404-657-7332.   Thanks in advance for your support in this matter.   YOUR child's Medicaid may depend on it!  Sincerely, Heidi    --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.   -------------- Forwarded Message: -------------- From: "Leanne Manning" Subject: Please Forward: Call to Action for Monday! Date: Sat, 14 Apr 2007 14:38:19 +0000 THIS STATEMENT ISSUED BY:  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 Heidi J. Moore heidijmoore@comcast.net 678-357-8200 Dream House Call to Action! But what can I do that  will make a difference? Meet us on the Capitol this Monday, April 16 at 10:30am! Our state leaders need to hear from you personally:  Write a letter to our state leaders with your concerns, and let's personally deliver our message! Don't balance the budget upon the health of children or elderly folks, disabled, or blind people. It is very concerning that the House Budget includes a 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. There needs to be a lot more thought and input into this option before adding into the budget at the last minute, resulting in: ·       No study data to validate how many aged, blind and disabled people this change would affect. ·       No study data to show how much money this change would actually save. ·       No chance for timely public response; and no options for those affected to learn of the impact of this decision and act in timely response. This last minute item surprised DCH, Medicaid, providers, patients, our top state leaders, and the taxpayers of Georgia, this legislation would implement managed care for the most disabled populations in our state, a model of care that has not proven to be successful across the country.  Instead, the current system which is based on disease management is the most effective for the patient and the payer.  Current state employee health coverage does not provide the same services that PeachCare offers, yet state workers who earn within the income bracket for Peach Care are not allowed to apply for Peach Care. State employees, if they meet the same criteria as non-state employees, should have health care benefits equivalent to those of Peach Care.  How can this be paid for? ·       Not by cutting Peach Care benefits; ·       Not by taking the most disabled and placing them in "managed care" which has a proven failure record for individuals that face complicated or multi-diagnosis'; Don't balance the budget upon the health of children or elderly folks, disabled, or blind people! What kind of message is conveyed by lowering the standards of health care in Georgia? What will happen to people in nursing homes? Would managed care interfere with the implementation of the MRWP/NOW waiver? How will the impact of reduced health care services affect and increase the burden placed upon schools for already overstrained special education services? If a decision is made to 'dump' the most complicated of patients on top of a system that is already ineffective and losing doctors and providers, what kind of care are any of our most vulnerable citizens going to get? Would this change really save 30-40 million dollars by putting elderly, disabled and blind people, individuals in Medicaid waivers like Katie Beckett, Children's Medical Services, into managed care?  Or, would the real cost be the lives and health wasted by lack of coordinated care? 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 prove to be a financial burden to Medicaid. Problems with the current 'care maintenance' system have resulted in many providers opting out of Medicaid.  These families need home and community based services, requiring a robust provider network with appropriate compensation for their services. Dept. of Community Health and the House and Senate Budget offices have a lot of concerns about the ability to implement this change, and they would need an 1115 waiver to do this.  We have been advised to contact the Senate with these concerns.  The budget will go to the Senate floor by Tuesday, and then it will go to conference committee to work out the differences. Bottom line: Managed care is NOT a good service delivery model for the Age, Blind and Disabled populations and can actually cost the state taxpayers more money.  We need more time to evaluate the options before this radical approach is taken. But what can I do that  will make a difference? Meet us on the Capitol this Monday, April 16 at 10:30am! Our state leaders need to hear from you personally:  Write a letter to our state leaders with your concerns, and let's personally deliver our message! 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'. ### Heidi J. Moore Wed, 18 Apr 2007 00:00:00 EDT http://www.lgtinc.org/articles/226/1/Articles-from-Effingham-Herald-Newspaper 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:   http://www.effinghamherald.net/display.php?id=9937   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  homeIn 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 castleAt  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 futureIn 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. Heidi J. Moore Wed, 18 Apr 2007 00:00:00 EDT http://www.lgtinc.org/articles/224/1/NMML-Sports-Complex-Update--Advocacy-Needed March 8, 2007   Dearest Advocates:   As many of you know, I sent out an email a few days ago expressing concerns about Alpharetta City Council's continued partnership/support with North Metro Miracle League (NMML) and the construction of the Sports Court at North Park.   First of all, I want to personally thank all the families and friends that attended the City Council meeting on Monday and sent e-mails of support.  We packed the court room (estimates are over 100+)!  The Mayor even commented on receiving over 300+ at the meeting!  I think this shows the communities concern with the issues.  It was obvious from that Council meeting that more needs to be done to "help" educate our elected officials on the needs of individuals with disabilities and their families and the support of the entire community!   The city continues to talk in vague terms about a "process" that needs to be completed (citizens survey, assessment,etc) to prepare a "master plan".  Unfortunately, NMML (and the City thru Block Grants) has $47,000 to possibly lose due to the lack of support in a timely matter to support the final construction phase of the Sports Complex.    Facts:   The partnership between NMML and the city is a win/win situation. Good business decisions. In past, the City invested 10% (via Community Development Block Grants) of the cost of the Sports Complex and now is worth over $2.0 million (rate of return on investment of 900%)!  The Sports Complex has added value to the City and allowed all its citizens to benefit from this facility to date. Sports Court Delay……  If the City does not make timely decisions now, NMML will loose this opportunity for Alpharetta to have a Sports Court that everyone can benefit from? I agree that a needs assessment is a good tool because it will show how many families support additional programming opportunities for the disability community. But, unfortunately we don't have the time to wait.  Even the Alpharetta Youth Softball Association (AYSA) is in support of this proposal and sees the benefit. Our families need sports programming options. NMML goal is to provide programming that offers a variety of more appropriate challenges for children and adults with disabilities. Baseball is not a "one size fits all" answer to the multitude of challenges the NMML athletes face.  We are very appreciative of the work so far but we need to do more.  A choice of sports programming will allow parents and coaches to find the right match between a person's disability and an adapted sports program that will maximize the improvement in that persons physical, social and coping skills. The multi-use Sports Court may be used by children and adults of all ability levels but it will specifically fill the need for the disability community that is currently drastically underserved.   Action Items Needed By YOU:   A. Please take a moment if you have not already done so and send an email to Alpharetta City Council with the following message points:   + Appreciation of the City partnering with NMML and continuing that relationships in the future. It's a win/win!   +Question the Council on: What are the timeframes for completing the citizen's survey and needs assessment? (The Council still has not given us any timeframes of the process and only talked in the general terms. We need answers!)   + Overall- need for more sports programming opportunities in the community for individuals with disabilities.   + Please make your e-mail/ phone calls are personal. Explain the impact this has on your family.   The following is a link to contact information for the Alpharetta City Council and Mayor: http://www.alpharetta.ga.us/index.php?p=29.   Please copy John (jettjock@mindspring.com) (ED for NMML) or myself (heidijmoore@comcast.net) on your emails.   B.  If you are an Alpharetta Resident, please participate in the Citizens Survey when you receive it in the mail.  I received mine yesterday. Specifically, Question D9: "Do you or any member your family have a disability? And Question D10: "Do you think Alpharetta meets the needs of people with disabilities?"  THEY NEED TO HEAR FROM US!!!!   In addition, Revue and News Newspaper had an article in today's newspaper entitled "Miracle League told to wait -City Council sticks to process before giving OK to Sport Court for disabled residents". To view that article go to:   http://www.northfulton.com/1editorialbody.lasso?-token.folder=2007-03-01&-token.story=154705.112113&-token.subpub=   Also send an email to the reporter, Bob Pepalis, bob@northfulton.com thanking him for the coverage of the situation and why it is so important to the disability community.  The article did not totally represent the facts to the situation and NMML plans on writing a letter to help clarify the true issues.      (Heidi's Comments:......NMML has been communicating well with the Council on this issue, unfortunately, the Council has not done a good job communicating within itself! )   There was also an article on Page 2 of the Alpharetta Neighbor yesterday. Unfortunately, it is not on there website www.neighbornewspapers.com.  The reporter, Amber Summers did a great job explaining the concerns of the community on this issue. Please take a moment and thank them for their coverage of the situation: nfulton@neighbornewspapers.com.   Even if you don't live in Alpharetta, NMML works with families all over the Metro Atlanta area and needs your help.  Thanks in advance for your help in this matter. UNITED…. WE WILL MAKE A DIFFERENCE!   Sincerely, Heidi   For more information on NMML go to: www.nmml.net . It truly is a wonderful organization that has helped an entire community with the acceptance of individuals with disabilities and seeing our children for their abilities NOT disabilities!   --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. Heidi J. Moore Fri, 09 Mar 2007 00:00:00 EST http://www.lgtinc.org/articles/223/1/Advocacy-and-Information March 6, 2007   Dearest Advocates:   Thought you might be interested in the below information. Only with getting involved attending events, filling out survey's, communicating our concerns…………….are we going to continue to have our voices heard for our children!  YOU are your child's #1 advocate.  Hope you find this information useful.  Sincerely, Heidi =====================================================    The following is a message from David Tolleson with the City of Roswell:   Special Populations Awareness Month in Roswell: Advocacy Opportunity:  7:30 PM, Monday, March 19th, in front of Roswell's City Council.  At that time, the Mayor will be proclaiming that April will again be Special Populations Awareness Month.  There will be a brief video presentation about the Inclusion Task Force's past successes in Roswell, including information about how far we still need to go.  We're asking to double the budget of our ADA Task Force this year and the presence of many families helps us make progress slowly, but surely.  There will be a reception with sn ack-type foods after the presentation, probably around 7:45. Due to the March date, the Task Force suggested wearing something green as a sign of solidarity (shirt/scarf/whatever).   (Heidi Comments: I realize this is a school night but it always helps for the City to see the faces of the children.  You don't have to be a resident of Roswell to show your support at this event.  The timing of this event is critical since they are going into budget season. )    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!   ===================================================   --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. Heidi J. Moore Tue, 06 Mar 2007 00:00:00 EST http://www.lgtinc.org/articles/222/1/Advocacy-Needed-By-YOU%21 March 2, 2007   Dearest Advocates:   Earlier this week I sent an email out regarding the need for family participation at an upcoming Alpharetta City Council meeting.  I wanted to clarify the reason why we are asking to speak to the Council……   Our goal is to help educate the Council on the needs of its residents/community/tax-payers/businesses and to continue to support the partnership the City has with North Metro Miracle League (NMML). This is also includes the completion of the Sport Court in our existing Sports Complex.   The Council needs to understand us and listen to our concerns and SEE the critical mass of people being concerned about the issue.....Individuals with disabilities need access to programming in the community!   PLEASE take this opportunity to show your support and attend this meeting (see specifics below).  We plan on having the following list of speakers that represent various segments of the disability population.   Tina D'versa - Chairperson for NMML - Overview why we are here. Heidi Moore - Parent / Resident- younger children. Cindy Smith - Parent / Resident - older children. TBD - Youth Volunteers "Buddies" Maureen Wales - Adaptive PE teacher and programming. Al Nash - President of N. Fulton Chamber of Commerce Mark Johnson - Resident - wrap-up   If you can't attend this important meeting , send a e-mail message to the Mayor and City Council.  Tell them what the NMML and a completed Adapted Sports Complex means to you, your family and/or group and our community.  Following is a link to contact information http://www.alpharetta.ga.us/index.php?p=29. Please copy John (jettjock@mindspring.com)  or myself (heidijmoore@comcast.net) on your emails.   Hope to see you there. Sincerely, Heidi   ================================================   February 26, 2007   Dearest Advocates:   PLEASE READ   Unfortunately due to some political issues, funding for a Sports Court for children and adults with disabilities is at risk AND WE NEED YOUR HELP! Even if you don't live in north metro Atlanta, this should be everyone's concern.   Proper funding for programs for children and adults with disabilities is necessary.   North Metro Miracle League (www.nmml.net) is a fantastic organization that has been instrumental in helping our children participate in sports in North Atlanta (as well as many other programs not involving sports).  They have been able to secure federal funding for a Sports Court but due to some political issues from the Alpharetta City Council (ACC).NMML may not be able to build this complex.  ACC is not convinced that the land utilization for this complex is best for North Park.   This is about more than just a Sports Court, it is about an opportunity to politely educate ACC for the need of  access to adaptive programming for children and adults with disabilities in Georgia.  If ACC is not going to provide services to the community, they should support the efforts of NMML (like they have done in the past). Private / Public partnerships are wonderful ways to develop the necessary programs needed for our children. It is a win/win situation.   Alpharetta City Council needs to see our families/concerned tax payers understand, care and want fair funding opportunities and programming for our children!   Please Attend!   Details:   Alpharetta City Council Meeting Monday, March 5 at 7:30 pm Alpharetta City Hall 2 South Main Street, Alpharetta, GA 30004 (parking is to the south of city hall building) 678-297-6000   Families and Children are welcome. (Bring your friends and neighbors. We need critical mass)   Please RSVP John McLaughlin (NMML Executive Director) at jettjock@mindspring.com or 770-777-7044 of your attendance ASAP.   Thanks for support in this very important matter. See you there!   Sincerely,   Heidi     --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. Heidi J. Moore Tue, 06 Mar 2007 00:00:00 EST http://www.lgtinc.org/articles/220/1/Newsweek-Magazine-and-AJC-Articles January 26, 2007   Dearest Advocates:   There are a number of articles that I thought you might be interested in:   Newsweek Magazine:   Newsweek Magazine had an article this week on the new guidelines issued by the American College of Obstetricians and Gynecologists (ACOG) on the recommendation that all pregnant women, regardless of age, be offered genetic counseling and testing for Down syndrome.  Unfortunately, 85 percent of pregnancies in which Down syndrome is diagnosed end in abortion.    As you can imagine, this is a very controversial issue……On a personal note: I think my son, Jacob, is a true blessing in this world (note: I found out at 20 weeks of pregnancy that Jacob was diagnosed with Down syndrome, a severe heart condition and excess water on the brain and may not live thru pregnancy). My husband and I truly believe that God gave us our precious Jacob for a reason and that we were "chosen".  I can honestly say that Jacob (only 7 yrs old) has had more of a positive impact in this world than most people do in a lifetime.  I do think society would be a better place if more people had love, compassion and determination like my son.    Here is the web link to the article:   http://www.msnbc.msn.com/id/16720750/site/newsweek/   If you would like to write to the reporter, George F. Will, he can be reached at webeditors@newsweek.com (also copy Letters to the Editor letters@newsweek.com ).   =============================================================   Also in today's Atlanta Journal- Constitution Newspaper the following articles:   Vouchers for special-needs students proposed By KEVIN DUFFY   http://www.ajc.com/news/content/metro/legis07/stories/2007/01/25/0126metlegvoucher.html   State's mental hospitals under reviewDHR chief responds to newspaper articlesBy ANDY MILLER jamiller@ajc.com and ALAN JUDD   http://www.ajc.com/health/content/health/stories/2007/01/25/0126meshmenta.html   And another previous article about the situation in AJC: http://www.ajc.com/health/content/health/stories/2007/01/04/0107meshabout.html   Happy Reading! Heidi   --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. Heidi J. Moore Tue, 30 Jan 2007 00:00:00 EST http://www.lgtinc.org/articles/204/1/Healthcare-For-Kids-Rally---Quick-Tips%21 October 30, 2006   Dearest Advocates:   Kids around the State of Georgia need your help. On November 4, 2006, Children along with parents, providers, and concerned citizens will rally and raise their voices at Georgia's State Capitol.   We will have a peaceful, fun-filled Rally for the kids, and share our concerns about the recent changes in Georgia's health care programs that have stopped or inhibited the care of Georgia's most vulnerable citizens: our children.     The Healthcare for Kids Rally is an effort to unite parents and those who love and care for our children, together as one, to tell Georgia's leaders that health care for children in our state is a priority. The Rally will encourage our leaders to ensure:   ·          Eligibility of all children in state health care programs: PeachCare for Kids, Babies Can't Wait, Children's Disability Waivers (including the Katie Beckett Waiver), and Medicaid   ·          Full adherence to the Early Periodic Screening Diagnosis & Treatment (EPSDT) Federal Requirements   ·          Granting children access to medicine, doctors, therapy, provider networks, durable medical equipment/medically necessary supplies                     ·          Transitional health care for those in the 18-21 age group   ·          Rectifying the burdensome application, appeal and claims process in all areas of the system   Quick Tips for the Healthcare for Kids Rally Saturday, November 4 at 9:30am at the GA State Capitol!   1. Rally Signs. If you plan on making signs at home, here are some suggestions (No Candidates names or references to politicians, please!!!)  We are a bi-partisan Rally and will not have any signs that have candidate's names on them. Please respect this decision. In addition, you may want to consider putting pictures of our children on the signs.  This puts a "face" to the situation.   From the Capitol Police: No signs can have sticks or handles on them due to safety and visibility issues.   Here are a few Rally Sign suggestions you may want to consider: We value our children! Don't you? Who will save Medicaid? Evaluate Medicaid, NOT Terminate! Ignoring Medicaid Crisis is like Institutionalizing our Kids Medicaid Crisis Is Costing More than $580 Million! Children are Investments, Not Liabilities! $580 Million Surplus but No Healthcare for Kids? Make Kids' Health a Priority in Georgia! First Priority: Georgia's Kids! Wise Medicaid Programs= Wise Kids! 2. Please try to wear RED the day of the event to reflect the emergency state of children's healthcare in Georgia   3. If possible, please try to carpool or take Marta. Parking garages/lot locations can be found on our website: www.kidshealthcarega.org   4. If you would like to make a donation to help defray the costs associated with the rally, please go to our website, www.kidshealthcarega.org. We're volunteers working with virtually no budget and your monetary donations help us pay for basic supplies.    5. We are expecting a large turn out of participates at the Rally.  Please allow yourself enough time to arrive, park, and sign-in. The Rally will start at 9:30AM SHARP. The "Kids on the Block" Puppet Show will start at 9:10am. Washington Street will be closed in order to allow for the high volume of participates expected for the Rally!   6. We are expecting a lot of media attention so don't be surprised to see them there the day of the event.   7. We have invited every legislator in Georgia to attend but we need your help.  Please take a moment and invite them as well.  If you don't know who your state senator or representative is go to the following website and input your 9-digit zip code (which can be found on your junk mail): www.vote-smart.org. Also, please let me know if you get confirmation that they will be attending. We are going to publicly acknowledge every legislator that comes out to support our effort but they will not be allowed to speak due to the nature of the Rally being bi-partisan.   8. Finally…We need to show our strength in numbers by attending the Rally. Please don't assume that someone else will go on your behalf.  This is an election year and we need to unite our voices as one to make sure our message is heard….Healthcare must be a priority for our children and the providers that service them!   Thanks in advance for everyone's support. Look forward to seeing at one of the largest grassroots advocacy efforts this state has ever seen!   United… WE WILL MAKE A DIFFERENCE!   Sincerely, Heidi J. Moore Rally Coordinator Healthcare for Kids Rally   For additional information regarding the Healthcare For Kids Rally, please go to our website: www.kidshealthcarega.org.   Heidi J. Moore Tue, 31 Oct 2006 00:00:00 EST http://www.lgtinc.org/articles/202/1/Media-Attention-Regarding-Healthcare-for-kids-in-GA%21 October 19, 2006   Dearest Advocates:   There has been a lot of media attention given to the healthcare issues in this State regarding children in the last few days!  Please see the list below of those articles.  At this time, I do not have time to give you all the contacts of the reporters that wrote these articles but if you could send them all a thank you about educating the community on the issues our children face regarding healthcare or what type of articles you would like to see in the future…..that would be great!   Unfortunately, since this is an election year…..Things are starting to get "heated" BUT the bottom line issue is we want to work with our elected officials on "real" solutions to the Medicaid problems we have been experiencing as parents, providers, and concerned taxpaying citizens of Georgia.   Happy Reading………….   http://www.macon.com/mld/macon/news/local/15790395.htm   http://www.ajc.com/metro/content/metro/election06/electionpage.html     http://www.gwinnettdailypost.com/index.php?s=&url_channel_id=32&url_subchannel_id=&url_article_id=20607&change_well_id=2   http://www.valdostadailytimes.com/homepage/local_story_289000529.html   Summary from yesterday's TV media coverage: WXIA 11 Alive News Atlanta Taylor Promises to Restore Program http://www.11alive.com/news/news_article.aspx?storyid=86266   WGCL CBS 46 Atlanta Gubernatorial Candidates' Response to Georgia's Medicaid Children Reporter Wendy Saltzman continues coverage of the Georgia Medicaid issues effects on our Children Featured Videos Section of http://www.cbs46.com       In addition, please understand coordinating this rally is a full time job right now and I may not be able to get to everyone's individual questions until after November 4th. Please be patient as I do want to help as many families as possible but the Rally has to be my focus at this time.  Thanks again for all your on-going support to this important issue in our state……..Kid's healthcare must be a priority in Georgia!   United…WE WILL MAKE A DIFFERENCE!   Sincerely,   Heidi    Please join us for the Healthcare for Kids Rally to be held on November 4, 2006 at 9:30am at the GA State Capitol. For more info., please go to: www.kidshealthcarega.org   --Heidi J. Moore (Proud Mother to Jacob - 6 years old with Down syndrome & Jared - 5 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. Heidi J. Moore Tue, 31 Oct 2006 00:00:00 EST http://www.lgtinc.org/articles/198/1/Barbra-Streisand-Tells-Heckler-to-%26%2339%3BShut-the-F------Up%26%2339%3B FOXNEWS.COM HOME > FOXLIFE Barbra Streisand Tells Heckler to 'Shut the (Expletive) Up' Tuesday, October 10, 2006 E-MAIL STORYPRINTER FRIENDLY VERSION  Oct. 9: Barbra Streisand performs at Madison Square Garden in New York. AP AP NEW YORK -  Comedians are used to hecklers - but not Barbra Streisand, who swore at a guy who didn't like the President Bush impersonator she brought out for a sketch during her concert at New York City's Madison Square Garden. A few people in the crowd jeered at the skit - which portrayed the president as a bumbling idiot - and told Streisand to stick to singing. The well-known liberal told them, "Come on, be polite." But one heckler wouldn't let up and Streisand let him have it. She told him to "Shut the (expletive) up!" The crowd applauded wildly. Streisand added, "Shut up if you can't take a joke!" With that one F-word, the jeers ended. Streisand later apologized to the audience for using the F-word and delivered a message of tolerance. As for the Bush impersonator, Streisand pointed out that "the artist's role is to disturb." There were a few other spontaneous moments, such as when one fan shouted out, "Marry me, and I'm gay!" to which Streisand, a gay icon, replied: "There are gay people here?" Streisand has recently return to touring after a 12-year absence. Monday night's show was the third stop of a 20-city jaunt across the nation - a virtual lovefest between the ultimate diva and an adoring, sold-out, celebrity-dotted crowd. Alan Weinrib Tue, 24 Oct 2006 00:00:00 EDT http://www.lgtinc.org/articles/175/1/CBS-46-Investigative-Rpt--Sept.-28-at-11%3A00pm-on-Medicaid-situation%21 September 27, 2006   Dearest Advocates:   I just wanted to remind you that CBS 46 News will be airing their Investigative Report on the Medicaid situation on Thursday, September 28th at 11:00pm.  CBS has been working very hard on this piece and is airing promotional "teasers" throughout the week leading up to the report.    PLEASE take a minute after the show airs and thank the reporter, Wendy Salzman at Wendy.Saltzman@CBS46.com for her coverage of this important issue in our State......Healthcare has to be a priority for our children!  Also- please copy the station as well on your e-mail cbs46news@cbs46.com and the news director at rick.erbach@cbs46.com or you can call them at 404.327.3144.    CBS needs to hear from us and how appreciative we are of dealing with these important issues our children face and the providers that service them. If they get enough response, they have enough coverage to continue to air additional segments! Only through building community awareness of the situation (and working with the media), are we going to impact change in this state!     The bottom line is..... children are not getting the services they need and can't find providers to provide those services due to the bureaucracy of paperwork Medicaid has developed in order to cut costs!   The system is in a crisis and we are not going to take it anymore.  Hope to see you at the Rally- November 4th 9:30am at GA State Capitol.  I will be sending out additional information as the time gets closer and we are going to have a website and press releases as well for those interested very soon.......Stay tuned!   United... WE WILL MAKE A DIFFERENCE!   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. Heidi J. Moore Wed, 27 Sep 2006 00:00:00 EDT http://www.lgtinc.org/articles/174/1/Cherokee-Tribune--Great-Article September 7, 2006   Dearest Advocates:   Below is a wonderful article written in the Sunday section of the Cherokee Tribune.  Please take a minute and thank the reporter, Sarah Alexander at salexander@cherokeetribune.com for her coverage of this important issue for children with disabilities.  (also thanks to Susan L. for opening up her heart and child to the media to help educate everyone in the community the importance of inclusion!) Once again....Early intervention is the key to success for our children......Enjoy! Sincerely, Heidi   ========================================= Interest increasing in special education preschoolBy Sarah E. Alexander Cherokee Tribune Staff Writer Susan Lumpkin of Ball Ground has an ultimate goal for her 4-year-old daughter, Zana: Self-independence. Mrs. Lumpkin's daughter, who has Down syndrome, is one of a growing number of special needs students participating in the Cherokee County School District's preschool special needs intervention program. Zana started the program last year and now is in a preschool inclusion class at the Ralph Bunche Center in Canton. "I've seen some progress in her ability to follow directions and to stay on task," Mrs. Lumpkin said. "I think it will better prepare her to enter kindergarten next year." More preschool-aged students with special needs are enrolling in the district. During the 1995-1996 school year, the district received 164 referrals for preschool and 161 were evaluated. During the last school year, the district received 418 referrals and 359 were evaluated. Debra Farist, lead preschool facilitator for the district, said she thinks more students are in the program because of better early identification and more knowledge about the students' needs. "We expand every year," she said. "We're usually adding a class or more every year." Ms. Farist said there are 135 children with special needs in the preschool special needs intervention program at the Ralph Bunche Center, First Baptist Woodstock, Bascomb Methodist Church and Arnold Mill, Boston, Hasty, Holly Springs, Johnston, Sixes and Woodstock elementary schools. "Our children come in as they turn 3, so of course we have children coming in every three weeks," she said. Ms. Farist said she thinks the district has improved its ability to identify students' special needs before they enter kindergarten. "That's the whole point of the program - is the earlier we get the child the more likely they are to be able to be in a typical classroom. That's our goal: for every child that comes in is for them to be able to be in a typical classroom in kindergarten with whatever modifications and support they need," she said. "Everybody doesn't always meet that goal, but- last year and the year before last like 96 percent, 97 percent of children were in a typical setting for most of the day that came from our program." Sherry Green, district supervisor of special education, said she is very proud of the program's success. "Early intervention is critical for students to achieve. The research certainly suggests that the earlier we get the child in an intervention program that the more successful that child is going to be moving forward in school," she said. "It is certainly a strength in the school district and something that we're very proud of." Ralph Bunche Center Administrator Dr. Mary Ursits said the school has included students with special needs in class before, but this is the first year they have had a special education teacher in a classroom for half-days with a Head Start teacher. "Inclusion helps many students with special needs," she said. "The inclusion situation gives many students with special needs the opportunity to have age-appropriate peer role models." salexander@cherokeetribune.com Copyright © 2006 Cherokee Tribune. All rights reserved. All other trademarks and Registered trademarks are property of their respective owners.   --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. Heidi J. Moore Fri, 22 Sep 2006 00:00:00 EDT http://www.lgtinc.org/articles/172/1/CBS-46-Coverage-of-Medicaid-Situation-and-Rally-Update September 18, 2006   Dearest Advocates:   As many of you may be aware, there has been alot of work going on with Atlanta CBS 46 and providers and parents regarding this Medicaid situation in the State.  I truly appreciate CBS wanting to show the true impact on our children and providers due to bad decisions made right now by Dept. of Community Health.    I talked to the reporter today and she said the story is still scheduled to air on Thursday September 28th at 11pm. She said these dates are always subject to change because they are still trying to get some of the final elements for the story.  Last Friday, she was finally able to sit down with Mark Trail to get an interview.  CBS 46 News is planning to run promotions to preview the September 28th story. That means hopefully a lot of people will watch!  They may also do follow-up stories during November ratings period.  So stay turned!   I'll send another e-mail out when the time gets closer to airing but wanted you all to be aware that we are continuing to get TV coverage of the issues our families and providers face due to bad decisions. Ultimately, our children are not getting the services they deserve and need.   I do think having the Healthcare for Kids rally at the Capitol is going to get everyone's attention to this matter. We have a team of over 40 volunteers working on this Rally.  I am convinced the time is now to unite our voices as one and express our concerns with the entire Medicaid system (including CMO's, BCW, Disability Waivers, etc)   The bottom line is..... children are not getting the services they need and can't find providers to provide those services due to the bureaucracy of paperwork Medicaid has developed in order to cut costs!   The system is in a crisis and we are not going to take it anymore.  Hope to see you at the Rally- November 4th 9:30am at GA State Capitol.  I will be sending out the flyer later this week for everyone to distribute. Hope to see you there.   It is going to be an event YOU will not want to miss!   United... WE WILL MAKE A DIFFERENCE!   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. Heidi J. Moore Fri, 22 Sep 2006 00:00:00 EDT http://www.lgtinc.org/articles/170/1/Healthcare-for-Kids-Rally-Flyer-and-Other-Information--Please-Distribute%21 September 19, 2006   Dearest Advocates:   Please find attached the "official" flyer for our upcoming Healthcare for Kids Rally to be held on November 4th at 9:30am at Georgia State Capitol.    The time has come for us to unite our voices to be heard....HEALTHCARE must be a priority for our children! This rally is being put together for everyone that has been impacted or has a vested interest in the Medicaid system (which includes the following: parents, providers, and concerned tax paying, voting citizens of Georgia....Therefore, everyone is impacted by this issue in the State of GA!)   At the rally, we will be discussing the following issues: + Eligibility + Access to care and provider networks. + Early Periodic Screening Diagnosis & Treatment Federal Requirements. + Burdensome Application, Appeal and Claims Process.   We encourage children to attend and plan on having some entertainment for them as well. It is going to be a family friendly event! We need to put a face to the children being impacted by poor decisions.   The color theme is RED.  Please try to wear red the day of the event.    We recommend that you either car pool with other families or take Marta. There is parking available but it might be easier to come together as a group!    We currently have a wonderful volunteer group of over 40 concerned citizens wanting to make a difference and change in the direction of Medicaid!  I am amazed at how many people are actively wanting to get involved.  If you would like to volunteer (still looking for people the day of the event to help with set-up/clean-up): please send Leanne Manning (leanne_d@bellsouth.net ), my administrative assistant for the Rally, an e-mail with the following information: Name, e-mail, phone numbers, where you live, and if you are a parent, provider,etc.   Also- if you know of a organization and/or person that would like to donate to the Rally, please let us know.  North Metro Miracle League (NMML) has graciously offered to be an administrator of funds for the Rally! Please see the attached flyer for further information. Thanks in advance for your help in this matter.    This is going to be the event of the year for Healthcare in this State....... Let's show our support!   Feel free to distribute this flyer to anyone you think would like to attend and post at therapy clinic's doctor offices,etc. WE need to get the word out about this event. The more people that show up the better........   We are voting citizens and need answers to the healthcare crisis in Georgia!   UNITED... WE WILL MAKE A DIFFERENCE!   Additional information can be found on our website: www.kidshealthcarega.org  Hope to see you there!   Sincerely, Heidi J. Moore Healthcare for Kid's Rally Coordinator   --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. Heidi J. Moore Tue, 19 Sep 2006 00:00:00 EDT http://www.lgtinc.org/articles/169/1/More-Media-Attention-to-Therapy-and-Healthcare September 16, 2006   Dearest Advocates:   I just wanted to let you know that our advocacy efforts are continuing to paying off....   NBC WALB from Albany aired on September 15th  a segment regarding the therapy changes in prior approvals and other healthcare issues that will impact our children's access to healtcare in this State!  Here is the actual news segment and you can even view the video at the following address:   http://www.walb.com/Global/story.asp?s=5414040   Please take a moment and thank the reporter, Alicia Eakin   aeakin@walb.com for taking interest in the story and also send an email to  news@walb.com?subject=Medicaid/AE .   It takes a lot of energy and time in order to have these segments aired.  I also want to thank Stephanie H. for being willing to go on camera and state what a lot of parents are experiencing and continue to educate the community on the issues our providers are experiencing with Medicaid right now as well! Thanks to Missy for letting me know about the coverage as well!   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!    I hope you can see that we are continuing to get attention on this matter!  This is exactly why having a Healthcare for Kids Rally on November 4th 9:30am at the GA State Capitol is so important (before the election on November 7th).  It's going to be a major event! More information will be sent out soon including the flyer for the event.    Thanks in advance for writing your thank you's.  If you see media attention in your area, please let me know so we can make sure everyone knows what's going on throughout the State and be able to express our thanks as well.....   Keep up the great work.  UNITED... WE WILL MAKE A DIFFERENCE!   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. Heidi J. Moore Sat, 16 Sep 2006 00:00:00 EDT http://www.lgtinc.org/articles/166/1/URGENT%3ASave-That-Date%3A-Children%26%2339%3Bs-Healthcare-Rally%21-11%7B47%7D4%7B47%7D06-at-9%3A30am September 1, 2006   Dearest Advocates:   The time has come for EVERYONE to get involved.......    We are planning a Children's Healthcare Rally at the State Capitol on Saturday, November 4th at 9:30am.  More information will be following but I wanted to make sure you SAVE THAT DATE!   We all need to speak up and have our voices heard for our children and the providers that service them.  This is an election year and we need to make sure the State understands OUR priorities must include healthcare for our children.   The Children's Healthcare Rally will involve some of the following issues:   1. Eligibility Issues for disability waivers (including the Katie Beckett Waiver). 2. Access to a viable provider network (including therapy!) 3. CMO concerns. 4. BCW Concerns. 5. Overall, administrative paperwork problems in the system!   As you can see, we will be advocating for all children with and without disabilities that require healthcare from the State.   The issue is...... all children need healthcare (which includes having service providers to perform those services!).   If you are interesting in getting involved, donating time, or money in helping make this be the most effective rally to get the lawmakers attention....please send me a BRIEF e-mail stating the following:   1. What you think you do to help the cause? 2. Contact information including: name, phone numbers, e-mail address. 3. Where you live? 4. Are you a parent, provider, friend, concerned citizen, etc?   A rally committee is being put together to help make this a successful event.  Thanks in advance for wanting to participate!   Let's show our strength in numbers....OUR VOTE COUNTS!    UNITED... WE WILL MAKE A DIFFERENCE!   Hope to see you there! More detailed information will be following shortly.    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. Heidi J. Moore Fri, 01 Sep 2006 00:00:00 EDT http://www.lgtinc.org/articles/162/1/CNN-Headline-News-and-Our-Jacob%21 Dear Family and Friends and individuals that want to see Jacob succeed in life:   I have exciting news........I was contacted by CNN Headline News two weeks ago about them wanting to do a consumer educational story on Down syndrome! They ended up coming out to our house last week and video taping Jacob in music therapy (many thanks to Jennifer, his Music therapists for being willing to participate on such late notice), crafts with the kids and an interview with me.   Here is the detailed information on when the show will air and where you can see it on the web.  The story will air on CNN Headline News on Monday, August 21.  It will air once an hour, from 1-6pm, at around 7-8 minutes past the hour (provided there is no breaking news).  It will also be fed out to CNN affiliates (around 800-1,000) the same day.  On Tuesday, August 22, the story will appear on http://www.cnn.com/2006/HEALTH/05/26/health.minute/index.html (Health Minute segment).  I really hope we continue to see stories like this in the media.....CNN asked me what was my goal for Jacob. I said " My goals are like any other parent. For Jacob to live a happy, healthy productive life and that I hope society sees my son for his abilities, not disabilities.  It's not that Jacob can't learn, he just learns differently and at his own pace! He is an amazing boy that happens to have an extra chromosome!".   Thanks again to everyone that has been on the "Jacob Team" for many years. We are all seeing the hard work paying off in his accomplishments!   Please take a moment after the segment airs next week and thank CNN for continuing to cover issues that are important to the disability world. (CNN was fantastic to work with on this project and really tried to understand the issues associated with families that have children with Down syndrome).  Building awareness is half the battle to acceptance in society and building a brighter future for our children!   You can send a quick thank you to the following general CNN feedback website: http://www.cnn.com/feedback/forms/form1.html?33   And here is the reporter, Judy Fortin contact info as well: http://www.cnn.com/feedback/forms/form4b.html?21   Let's keep up the positive media for children with disabilities!    I'm so proud of Jacob and how well he did in the interview!  Hope you enjoy! 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. Heidi J. Moore Mon, 14 Aug 2006 00:00:00 EDT http://www.lgtinc.org/articles/91/1/%26%2339%3BPond-Scum%26%2339%3B---Who-Is-It%3F While having a bowl of "gypsy stew" at the Dragon Room the other day, I was struck by the words that came out of my friend's mouth - "We were called 'pond scum'!"   Now, just what the hell is 'pond scum'?   I know what each word is defined as in the dictionary; but, what in the name of disability do those two seemingly benign words mean when put together in a phrase?   Well, I took it to mean something that feeds off the life of others. And, I thought, this can't be a very good disability slur. We know that we feed off of others and its been going on for thousands of years, else we wouldn't be here today.   No, the more I gargled this toxic phrase in the pond of my mind, I thought that this is one of those 'double-edged' phrases that seemingly points in our direction. But how can that be when a little dissection provides another slimy thought - there are a lot of folks connected to our world that are my 'pond scum'.   My 'pond scum' are the socially conscious, well heeled educated crew that feed off the disability community; they take their nourishment from our blood.   Who are these folks? We all know them by their "I know what's best for you" knowledge and their ability to know this without ever having the experience of disability, other than on the feeding edge. They always have the right answers, because they have been around the pond for years, watching, observing and making a very good living off the 'scum'. Oh, and they are always so politically correct and blatantly interested in disability from an arms length.   Typically, my 'pond scum' know how to turn the right words and phrases that please the legislators and policy makers; and, more importantly, they look just like the folks they communicate with on 'our' behalf. So, when it comes time for getting a picture of disability, who do the legislators and policy makers turn to?   The same tired, but true, spokespeople for the disabled; those same people that make their daily bread off us and expect us to be grateful for their efforts at delivering us from evil! Sadly, a lot of these folks run our independent living centers too.   But I digress; back to my 'pond scum'.   Do we get called to testify? Do we get notified of cooperative grants, get research grants? Do we get asked to discuss policy implications, make presentations? Do we get asked to make speeches on disability-related issues? Do we get opportunities for employment? Are we appointed to high-level, window-dressing positions directly related to disability?   Do we have the experience to cover the above questions? Or, more appropriately, do the answers we have to offer and the experiences we have lived fit into 'pond' of disability that has been managed by the 'scum' for years?   A slippery "YES" to all the questions, but "NO" to the expected answers, from the bottom of the pond.   Do we get called to testify? Yes, but…generally our responses do not fit the shoes that legislators and policy makers walk in. Example: we know people want choice in the management of long term services (translated - control over how the money is spent); it sounds good, but it don't sell in the legislative world, despite the changes in funding allocations to home and community based services over the years - it's still 75% for the 'lock 'em ups' and 25% for the 'freedom livers'. And just why is this so? Well, not being privy to the 'caviar-filled rooms' of Congress - both Federal and State - my only logical answer is that we don't have the money to buy votes (otherwise known as campaign contributions) and can't describe our votes well enough to cast 'em in our best interests.   Grants? Why would I want to give grants to the very people I want to research? Hell, we're just not smart enough to break into the ivory halls and towers of the institutions of higher learning. They still know what's best for the unwashed rabble. And, why would we want to research ourselves; don't we know who we are?   Well, we do get involved in some of the discussions on policy implications, but generally our view of policy implications doesn't "jive" with the "controllers of the currency" (loosely translated as - service providers, disability cottage industry, bureaucrats, legislators, paid lobbyists). We usually talk about and promote choice and freedom living in the community and that's a little too much for the "controllers of the currency" to handle - especially when it comes to ensuring our 'health and safety'.   As for speeches, generally what's wanted is some type of "Jerry Lewis" figure (THAT USES PATERNALISTIC PITY) to draw a crowd, and then relay to us what we already know. And, we're always willing to pay to hear someone, other than one of us, 'cause "they know what's best"!   Employment?! What a joke on us! It costs too much to employ us - both in the world of education to get folks prepared, the health insurance, the job accommodations and the physical environment; and, the sticky environment of "attitude toward disability". Just what do these 'semi-sapiens' have to offer?   High-level appointments go back to money. We don't have any, so what can we offer. And, too damn many changes, real changes, to the way business is currently done would have to be adjusted - government contracts, employment attitudes, transportation, building accessibility, access to information - what we would want, they don't. Just remember back to Justin Dart and his "setting fire" to RSA with his unscripted Congressional testimony - how quickly he was handed his "cap in hand" and shoved out the door.   But, don't ever forget the "pond scum" motto - ADAPT OR PERISH! We're still here, so it's time to ADAPT! Jim Parker Mon, 27 Mar 2006 00:00:00 EST