An Open Letter to Families who have School Children with Developmental

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