Our son Andrew is four years old and has Down syndrome. He lives with his parents David and Penny, his Brother Jon (9) and Sister Madison (6). All three of our children have labels. Jon has Auditory Processing Disorder, Madison has Apraxia (a neurological disorder causing speech and motor delay) and Andrew has Down syndrome. We want all of our children to love learning and not struggle in school. Our goal is to help them to be everything they were made to be; to live independently, be able to support themselves and have meaningful, healthy, happy lives. We are dedicated to these goals for all of our children.
When Andrew was born with Down syndrome we began a journey full of obstacles and setbacks. To be able to realize our goals and dreams for him he needs constant support. Support in the classroom in the form of inclusion classes, special education, summer school, social skills classes and individual speech, occupational, physical and music therapy. Support in the home with respite care, because we cannot get a babysitter due to his disability, and private sessions of speech, occupational, physical and music therapy as well as aquatics. As Andrew gets older, he will need ongoing support so that he can get a job and live independently. Andrew has a very good shot at a pretty normal life if we can provide the support now that will enable him to gain the skills he needs for the future.
I have seen the difference therapy has made in our son and our other children. We are excited to see the progress and love of learning he has. We are excited to see what he can do when given the chance to excel. It has always been a fight to get these services and to pay for them. Up to this point he has been able to have private therapy (speech and physical therapy twice per week, occupational, music and aquatic therapy once a week). He has had the Deeming waiver since he was 2 and that has helped tremendously. I know he would not have the excellent prognosis he has without the therapy provided by Medicaid.
This year has been very challenging for us. My husband was laid off and we were fortunate to have HIPP benefits to keep our insurance so Andrew’s therapy could continue unaffected. He has the deeming waiver but the benefits have been cut so severely that our primary insurance was covering most of the cost. When my husband got a new job, we were informed that the insurance does not cover Andrew because developmental delay, like Down syndrome, is not a covered benefit. Now, none of our children will be able to get the much-needed therapy (a minimum of 11 therapies per week) they need to continue to develop and gain life skills to make them independent adults. Needless to say all other activities have been cut so we can do at least a minimum amount of therapy. This leaves us no option but to choose between our kids who gets therapy and who doesn’t. Could you make that choice? Who gets a shot at life and who doesn’t?
I have always thought that it was amazing that we have to fight every step of the way to get benefits and services for this amazing child who loves freely and works harder than anyone to gain life skills and language. Having to complete the deeming waiver every year is so wasteful of everyone’s time and energy. His prognosis is not going to change, it will improve slowly over time but he will ALWAYS need assistance. I would love for Georgia to save the paperwork and administrative costs associated with these waivers by reviewing these cases every five years or so or even to give them the support for life as other states do. As parents of children with special needs we are already under amazing stress and yet we are expected to drop everything and run around trying to get medical records and prescriptions and copies of hospital records every year. Andrew has twelve specialists along with five different therapists (and he is very healthy). It takes weeks and a lot of organization to get all the paperwork together so he can keep his Deeming Waiver.
I ask you to please cut the paperwork and administrative costs and put that money to work with actual services that can make a difference. You can reduce my workload and the states by making a change that is just good common sense.
When Andrew started school we came up against so many obstacles I wanted to bang my head against the wall. Each year it is a fight to get enough therapy and support for him to be able to learn effectively. We start at least one year ahead doing the research to determine who we need on our side at the school and to make sure the IEP will be what it needs to be to get the service for the next year. Having to consult with support groups of other moms who have already lived the rollercoaster of public education, advocates and special needs lawyers to make sure we are educated enough to know what to ask for takes tremendous amounts of time and diligence. It is exhausting. I would love to think that it will get easier but the reality is that to be an effective voice for your child you have to be LOUD and you have to be PERSISTENT. I wish there was a way to get services based on the actual need of the child instead of what is available in your area. In our county all speech is done as group therapy so he does not get individual attention. You can see the problem with Medicaid cutting speech therapy across the board and the schools doing it in a group that can include children from 3 to 5 years old with differing levels of ability.
In addition to these cuts, we have a school year that is 30 days shorter this year! Thirty days without any services at all is an incredible amount of time that a child who learns by repetition to be without these services. Most of the special needs pre-K teachers with experience in our schools were forced to find other jobs because they could not take the pay cut. Now we have first year teachers in these classes! They have never taught before but are expected to teach in an inclusion class. Because our home school does not have an inclusion class for Andrew, and I refuse to put him in special education full time just because the service he needs are not available there, I am researching which schools offer the services that are most appropriate for Andrew.
Our Andrew is awesome! He brings so much to our family and everyone around him. He works harder than most of us and never complains. He loves everyone unconditionally and brings so much joy to those around him. Give him a chance at a good productive life.