A Msg from Georgia’s Office of Developmental Disabilities

26 Apr

For your information and distribution:

 

An Open Letter to Families who have School Children with Developmental Disabilities, from Steve Hall, Georgia State Director of the Office of Developmental Disabilities

 

Beyond this date, April 25, 2006, please widely distribute to families that have children of any age with developmental disabilities in Georgia’s public schools. This memo should be given to parents.  It contains important information for families to think about and to begin planning for when their son or daughter becomes an adult.

 

Significant and rather magnificent changes are coming that will have great impact on people with developmental disabilities.  The State Office of Developmental Disabilities is writing new Medicaid Waivers that will give each person an individual budget of financial resources based on his or her exact needs.  These resources must only be used to purchase services or supports of significant benefit.  But let me back up a bit, introduce myself, and the reason I am writing this letter to you.  I would like to explain what a Medicaid Waiver is and why it is important to you.

 

            I am Steve Hall and I am the Georgia State Director of the Office of Developmental Disabilities.  I lead a team of folks that are dedicated to the health, safety, well-being, and the realization of a meaningful life for everyone in Georgia that has developmental disabilities.  Over the past several months we spoke at dozens of public forums and conferences statewide about the coming new Medicaid Waivers for Developmental Disabilities.  At those meetings, time and time again, families of children who currently attend public school in Georgia would come to me and say, “Steve, this is so important.  Few families are even aware of what you are talking about.”  Sometimes special education teachers said the same thing.  Medicaid Waivers are how States “waive” or change the federal Medicaid rules in a manner to better serve their citizens with developmental disabilities.  Before there were Medicaid Waivers, most of these federal Medicaid funds were used by each state to run their government institutions.  A more proper name for the Medicaid Waivers is Home and Community Based Services (HCBS) Waivers. 

 

            What happens to your children, teenagers, and young adults during their public school years is very important to me and the citizens of Georgia.  What happens in school makes all the difference in the world.  I have been a school teacher, school administrator, have taught teachers going back to the university for their masters degrees, and have worked as an executive leader for almost two decades.  Based on these experiences, I must share three best practices with you that I learned along the way:

1.                  Good Special Education greatly reduces the need for supports and the taxpayer cost of supports throughout the person’s life.  Good Special Education supports the student in the regular classroom.  Good Special Education provides community-based instruction outside of the classroom to better prepare the child for an adult life in the community.

 

2.                  The best special education services occur in the regular kindergarten classroom, elementary classroom, middle school classroom, junior high classroom, and high school classrooms that are located where the other children in your neighborhood are in class.

 

3.                  For most children with developmental disabilities, the Individual Education Plan (IEP) should be written to include non-school building instruction in work and other community environments during the school day, beginning by at least age 14. 

 

Georgia’s new Home and Community Based Medicaid Waivers are prepared to support children and adults to live, work, and participate in full community life alongside other citizens who do not have developmental disabilities.  “Places for them,” day centers, sheltered workshops, and taxpayer dollars staying with the government to run institutions are being replaced and closed all around the United States, including Georgia.  Instead of facilities, buildings, and other “for the disabled only” programs, taxpayers are investing in people with developmental disabilities themselves and want professionals to provide the services and supports in the real life of the community with everyone else.

 

      Employment is very important.  Over 200,000 people with developmental disabilities, who professionals and parents thought could never hold a real job, are employed throughout the United States through a practice known as Supported Employment. In the past, our own fears and lack of knowledge was the greatest barrier to people having a real job and becoming taxpayers.  In addition to meaningful productive work, membership in clubs, groups, churches, and associations is just as important.  Parents do not live forever.  This is why I have written this letter to you.  People with disabilities need to be valued members of their community so they are not solely relying upon their parents for resources, safety, companionship, and love.

 

      Our children will be successful throughout their adult lives to the extent that we as parents recognize the importance of their living alongside others who are different from themselves—not just people who have similar disabilities, not just people who are paid to be with them, and not just family members who already love them.  I want you to remember that your son or daughter did not do anything wrong.  People who have never done anything wrong are not put in special places just for them or excluded in any other way from the workplaces, groups, or places where all the rest of us live, work, and enjoy ourselves.  Special centers, special classes only for others who have such disabilities, and any program that takes our children away from the other children, do not result in people spending the rest of their lives with the rest of us in the real world.  All citizens with disabilities, including those men, women, and children with the most significant disabilities, should develop relationships with other citizens and be a valued member of the real world.

 

      Disability World is not the real world.  When children begin their educational lives in rooms and other places separate from children of the same age, they start down a path that most often ends as an adult existing outside of where everyone else in society lives, works, and plays.  An adult with a developmental disability who is a part of, not apart from, society is the result when children are alongside the other children that they will spend their adult lives with right from the start.

 

      I hope this letter is helpful.  I do not expect you to agree with everything that I have said and it is you, as your child’s parent, who will always know what is best.  If you agree with what I have said, then many others agree with you, and if you disagree with me, then you  have plenty of company also. 

 

      The purpose of this letter is to share my knowledge and experiences that when children with disabilities are educated alongside children who do not have disabilities, and it is done right, then the outcomes as an adult are better.  Less support is needed when they become an adult.  People live longer.  They are happier.

 

      You are welcome to copy, email, and share this with others.  I am looking forward to working on behalf of your son or daughter throughout his or her adult life.  Please let me know what you think about what I have said, whether you agree or disagree.  Your opinion matters to me.

 

                                                                  Sincerely,

 

 

                                                       Stephen R. Hall, Ph.D., Director

                                             Georgia Office of Developmental Disabilities

                                                            srhall1@dhr.state.ga.us

 

 

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8 Responses to “A Msg from Georgia’s Office of Developmental Disabilities”

  1. Christie Wilcox May 5, 2006 at 1:16 pm #

    “Disability World” as you so curtly refer to it ,may not to be a real world to you,But for those of us who live in it daily it is all too real .If things could be wrapped up all in a pretty little bow by placing children like my daughter in a regular class or at a job then there would be no need for your agency.Many children like mine will never be able to care for themselves in any manner and by pushing for” Inclusion At All Costs”,you cut families like mine off at the knees.If you think it is so easy I invite you to find daycares that will readily accept a severely disabled child so the parent can work.Better yet…just try to see how many churches will go out of their way to include our kids in vacation Bible school.Even in the Bible belt the door in not always open .If it is you will find someone who has a disabled family member holding it open.As parents of disabled kids..the only way we get information is from each other..and by doing away with all the “disability only”programs you sever our lifeline….People don’t give it much thought when it is not their reality.Those of us who LIVE in Disability World..not thoe that just visit but can go home when they choose need help…real help to live in the world that is real to us,not to just fit into what others see as best for us………………….Thank you .Christie Wilcox(Shelby’s mom 24/7.Byron,GA..Disability USA)

  2. Dick May 6, 2006 at 10:50 am #

    I agree with you in a lot of ways, Christie, and am currently mulling over exending and expanding on this letter in a future post. But I thought it was interesting, anyway, and reflects the thinking at the state level. Thanks for stopping by!
    dick

  3. Sherry in Georgia January 25, 2007 at 11:09 am #

    Mr. Hall has seen a lot of people with disabilities doing things we could not even imagine. My entire life has been in the disability world. My brother lost his sight at an early age from glaucoma; yet my mother would not allow him to be separated from his peers in the regular education classroom. He received specialized training at a center for the blind, but all his education took place in a classroom with his peers.

    He went on to receive his bachelor’s, and now works for a state agency, is Vice President of his local Federation for the Blind, has a wife and two daughters, and more friends than I.

    I now have two children of my own with disabilities and would have it no other way for them. I think in all of this “mother knows best”. There was a point in which I would not have put my son in a regular education classroom – not because he didn’t deserve or want to be there, but because I didn’t think school personnel were trained enough to support his needs.

    Mr. Hall was just trying to get us to see that in even those with what most would call “profound” disabilties would have unlimited potential if we accept, embrace and educate them.

  4. Dick January 26, 2007 at 8:24 am #

    I agree with you in many ways, Sherry. I do think though, that many students need a place where they can go during the day to be themselves, whatever that means, without having to constantly struggle to “fit in.” I agree that getting people trained up is job #1 as that is going to make or break an inclusion experience.

    Like any parent, I have mixed feelings about “Disability World.” Sometimes, at our house, it really IS a lot more real than whatever world most people live in.

    dick

  5. Samantha Kluglein March 1, 2007 at 7:41 pm #

    Dr. Hall intervened on behalf of my daughter before she was forced by the Community Health program to go to a group home. My daugther is severely handicapped and at 22 years of age functions on the level of a 1 month old with multiple medical needs and organ system involvements. She was a resident of the Nursing Home Center in Milledgeville until the Governor and his Task Force decided to reinterpret the Olmstead Act in an effort to redirect medicaid funding from state facilities to community programs whether or not the patients were appropriate candidates and whether or not the families wanted to do so. They closed the Nursing Home Center and crammed medically fragile children into another building at Central State with adult patients with various levels of disability, some who are violent. The Olmstead Act arose from a lawsuit in the 60’s filed on behalf of two adult schizophrenic women that did not wish to live in an institution. The Supreme Court ruled they had the right to determine their own living conditions to the extent possible and to live in the least restrictive environment. Sally Carter, former Director of the Georgia Office of Developmental Disabilities and now a consultant to the State of Georgia, is leading the band wagon on reinventing history. Apparently, Ms. Carter is dictating to the Governor and state employees that all Georgia State facility residents will go to the community eventually regardless of whether they can be served appropriately or not. The program was instituted for children under 21, but Ms. Carter and Georgia’s Regional Boards do not feel bound by that fact either, rationalizing my daughter was under 21 when the program was initiated. They went so far as to apply for a Medicaid Waiver to take my daughter’s funding to community based care although they are not her guardian, broke the law, and then falsely stated they had the authority to do so. My daughter was removed from the program after I contacted Dr. Hall; I am grateful for his judgment and action in a division that seems to be adrift without a rudder. Only a week later, Ms. Carter is stating my daughter’s removal from the program is a alternate interpretation of the Olmstead Act and is only for the time being. Ms. Carter is misinformed, overstepping and not providing value for the consultancy dollars she is receiving. She is creating chaos. I welcome conversation with and would like to hear from the state official responsible for her contract.

  6. Dick March 2, 2007 at 1:37 pm #

    Thank you for sharing this! Ms. Carter and Dr. Hall are speaking the exact same language as is the people on the federal level. People like your daughter (and my students) don’t seem to exist in the minds of the people making decisions and mostly trying to save a buck or two. They come along as sort of an afterthought, and then everyone has to scramble to somehow fit into some narrow category or fit into the entire herd. Some individuals *do* need more extensive care and sometimes that might be in a special healthcare facility. You might have a case for some sort of lawsuit that might result in correcting this new interpretation of the Olmstead Act that seems to be harming as many people as helping them.

    D.

  7. Isha hollman May 18, 2007 at 2:30 pm #

    I am in need of some assistance with caring for my Daughter Essence Hollman. We are currently on the short term waiting list for the waiver and I’m not sure how long the wait is, however we have been on it for over a year now. I am a single mother of 2 lovely girls, my oldest is 17 years old and she is an honor student at Norcross HS, however she is going through some growing pains, which makes life hard for everyone, and then there’s Essence my 14 year old angel that has Aicardi Syndrome and CP. Essence was born with this genetic disorder that causes her to have seizures and many other neurological problems. Essence will be 14 yrs old tomorrow and is still functioning at the 6 month old level, she is completely dependent on someone for care. She is wheelchair bound and is getting pretty big, which makes it very hard for me to transport her from her chair to the bed or other equipment. Essence has had many problems with her hips because she has never walked so her hips were not developed properly. She has had 3 surgeries on her hips and then one of the providers let Essence fall and now she is having more problems with her hips. I am trying to do my best here with dealing with my situation; however Essence does not sleep at night due to the issues with her hips and being uncomfortable, which makes for a long night. I am currently working and have been working since I had Essence, I pay my taxes and I would like to receive some assistance with purchasing diapers, in home support, medical supplies and some RESPITE…. I moment to breath and regroup from the never ending days.

    If you could please help out a working single mother who makes too much too receive benefits, but not enough to financial provide all medical and physical support for my child who has no one but me who she completely depends on. I would not be sending you this message if I did not need the help, however I love my baby and the thought of putting her in a institution brings tears to my eyes because I know that she nor I would be able to live with that decision. I just ask that my angel gets to stay at home with services she needs.

    Sincerely yours,

    Isha Hollman

  8. shirley worthy January 15, 2009 at 11:47 pm #

    where would I find info on the role of a Developmental Disabilities Professional in Georgia?

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