x-sender: governor.haley@sc.lmhostediq.com x-receiver: governor.haley@sc.lmhostediq.com Received: from mail pickup service by sc.lmhostediq.com with Microsoft SMTPSVC; Sun, 8 Jan 2017 00:08:26 -0500 thread-index: AdJpbT6Qn7XM2Nx/RHO/YqMH+LoP/Q== Thread-Topic: Response via eform 100002 - Help with a State Agency From: To: Subject: Response via eform 100002 - Help with a State Agency Date: Sun, 8 Jan 2017 00:08:26 -0500 Message-ID: <883B2208D60F4E5D86FBB70FF5BB9DE1@IQ12> MIME-Version: 1.0 Content-Type: text/plain; charset="iso-8859-1" Content-Transfer-Encoding: 7bit X-Mailer: Microsoft CDO for Windows 2000 Content-Class: urn:content-classes:message Importance: normal Priority: normal X-MimeOLE: Produced By Microsoft MimeOLE V6.1.7601.23573 X-OriginalArrivalTime: 08 Jan 2017 05:08:26.0936 (UTC) FILETIME=[3E935380:01D2696D] WORKFLOW 344 mrs. Diana Hall Mother 1989 Pierce St. Daniel Island SC 29492 dedevries@gmail.com 8437259695 Hi- I wanted to touch base with you about the upcoming meeting with Pete Liggett and Lara Sheehi regarding SC Medicaid changes for Applied Behavioral Analysis. I am the mother of a sweet 5 year old boy. A boy with high functioning autism, speech delay and sensory processing dysfunction. Our day to day life is much the unexpected as my son's tantrums and social anxieties are unpredictable and sudden. The one therapy that has helped him the most is ABA or Applied Behavioral Analysis. ABA therapy is the gold standard for autism and I believe that we can change these children for the better with the help of Medicaid. I have struggled to get a full course of consistent therapy for my son. It has been interrupted by a waitlist for SC Medicaid, followed by providers denying me services due to the low reimbursement rates of Medicaid for ABA. (The providers said they could not accept the low rates the interim SC Medicaid approval for ABA offered and I had to wait until a second private insurance would pay for ABA services to start). Finally, the wait took even longer as I was waitlisted by several ABA companies who simply put did not have enough staff to provide therapy for my son. The private insurance proved a battle as well as they offered high copays ($80) a session and lengthy time periods for the ABA providers to become in network. Not to mention any instance our employer changed insurances, I would have to disrupt services to verify benefits simply because SC Medicaid would not reimburse the provider enough to cover their costs. My son was diagnosed with Autism at 3 years 2 months and it took us until he was 4 years 8 months to get ABA services through SC Medicaid. Every company I called in South Carolina had a waitlist. We moved away for a year for my husband's medical training and lived in Virginia. I was able to get Medicaid within a month, an attendant to help my nonverbal son learn to have someone other than his mother change his diapers and get him dressed, respite care for those days when he tantrumed for three days straight, all within a short 2 months. Virginia Medicaid funded one on one ABA family training by a BCBA for me to learn how to help my son's massive tantrums. In one short year, through the state Medicaid programs in Virginia my son changed. He went from speaking one word sentences to FULL sentences chalked full of amazing ideas. His tantrum behavior was analyzed through ABA and by an intensive three month Medicaid funded ABA programmed it went from self injurious and almost needing institutionalizing to us being able to talk him down from a tantrum. Miracles happened in our family's life and in his. I almost lost my child to autism but the state of Virginia and their Medicaid program which cooperated with their providers SAVED him. In SC we have many children with autism that need help and the answer is ABA therapy. It's not enough to provide Medicaid funded ABA at a low compensation because of a law. We need SC Medicaid to actually help these children by taking care of its ABA providers. It came to my attention some of the changes coming to SC Medicaid and I am concerned for my son and the possible interruption of services. Such an interruption would cause him to regress. Often when I say that people don't know what it entails, let me explain. My son is in a small private school in a regular classroom, attending a full day of school with an ABA behavioral technician as his shadow (or I call helper for when he can't form words or doesn't know how to interact socially and bites his shirt in anxiety). On a good day he comes home and plays in his fort in the backyard, interacts with his little brother and continues his ABA therapy to help with defiant behaviors and tantrums. A regression is when he loses his words, drools down his shirt, is fleeting and hard to keep in one place, defecates in his clothing, is dangerous to himself and others, harmful to his 2 year old brother, he recluses to his room and refuses to leave, screams at loud or everyday noises, wakes all hours of the night, throws various objects at me, hits, bites, kicks, destroys property and it goes on. Basically behavior that would send him back to his previous special education classroom, frequent counseling visits, and threats of the police coming to take him to the hospital. I should mention that a regression comes on quick. It happens as quickly as in him missing ABA services during Christmas break sending us back to the developmental pediatrician and him into a two hour tantrum whenever he is asked to do something other than what his brain thinks he must do. He said without his helpers he does not know what to do at school. The first thing I learned about autism is that my perceptions are not the same as his. A busy classroom full of choices is overwhelming and loud to him, causing his functions to shut down. It's really sad to watch and thankfully I we have had the tools to help him through it but I couldn't say that over a year ago before intensive parent training through VA Medicaid funded ABA. I'm concerned for my son and other children who can't afford to be on their parent's private insurances to pay for their ABA. These changes will bring on interruptions in services much less more delays and more waitlists. Please help our children. I am very concerned with the changes being proposed to SC Medicaid providers for ABA therapies. One important quality of a ABA company to me is that the company has a low turnover rate with their Behavioral Technicians. I understand many of them are in school to further their training. A sign of a good company is that they allow for this training as the technician is working directly under higher trained registered Behavioral technicians, Line therapists and Board Certified Behavioral analyst. The new change requiring the behavior technicians to be registered will rob the BT's of the opportunity to learn hands on as they further their training. I think of this time similar to a medical student who really starts to understand their training as they reach residency and have hands on clinical time. The Behavioral technicians need hands on clinical time while they become registered. Requiring them to get registered before working will keep many from being able to get the training while getting registered. You were in college once. Its hard and not everyone has support. Please reconsider this, the behavioral technicians could obtain their registration within the first 6 months of work instead of it being mandated before work begins. Furthermore, with a shortage of BCBA's South Carolina needs Behavioral technicians to be able to seek further training while working. We need good technicians who want to pursue their training to become BCBA's. Please do not hinder their aspirations of helping our children. We ABA mothers need good technicians and good standards but these new stipulations will create less Behavioral technicians as they can't afford to get registered without working. There are too many waiting lists among providers of ABA therapy for the State to create more lost time in our children's lives. Please reconsider your position. Sincerely, Diana Hall 1989 Pierce St. Daniel Island, SC 29492 843-725-9695 64.20.28.22