Keep Martha in VT!
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*** Please read 10/7/17 Update at BOTTOM of this page. I've been advocating for years, now Martha is out of state and deteriorating. Scroll down to bottom for update.
Please help Martha stay home!! I'm Martha's mom. Martha is 16 years old and has autism. She is a smart, capable, sweet, hard working and complicated young lady. She wants to be a farmer when she grows up. I started a home-based business growing vegetables and raising chickens, so she could do just that (Martha Grows,llc). I also founded a non-profit organization that will provide opportunities for others with autism (Martha's Barn, Inc.) I have been preparing for Martha's future everyday. Every. Single. Day. I have not stopped advocating for her since the day she was diagnosed at age 2, and I will never stop, as she doesn't have the voice to do it on her own. I have worked tirelessly advocating for Martha's care and education her entire life. That's why I started a business for her to work at and a program for her and others to be involved in, once they 'age out' of high school services. I'm planning on bridging that cliff for Martha and her peers. I love our community and Vermont and I want to keep that an integral part of who Martha is, my little farmer. What I HAD NOT prepared for, was the day I would be told VT cannot fund what Martha needs to remain home. Martha's needs are complicated and require a skilled team. Her educational, psychiatric and therapeutic needs are complex, as well, but she is in a wonderful program, right here in our community, and supported by a team of doctors. The missing piece is that her program can't stop when school ends. Our home life is tumultuous, to say the least. Martha struggles daily to stay safe. She has needed a 'continuum of care' for years, and now, I am desperately advocating for one, as our other option is sending her out of state, giving her to DCF custody or to another family to care for. This is unacceptable. I have applied for an out of state residential school placement for Martha, with her team's support, as we know, time is running out for her. I have been pushed to that point. Her needs are great. I am being told her VT plan lacks a 'system' to fund it. What? Isn't it better to fix the system than to send Martha away? Martha's IEP team and I have created a cost effective solution to keep Martha home and learning in her current community environment and in her current school placement. We have extended her current services to created a 'full day and supported overnight' to meet her level of need. Our solution is to build Martha more living space, to meet her safety needs, paired with the services and educational supports she has already here in our community. This will allow her a therapeutic environment to learn and sustain life skills, provide overnight space for staff but most crucially, the safety modifications to allow medication changes, which can't happen currently, unless she were to spend months in and out of psychiatric hospitals, none appropriate for her exist in VT. Both the Agency of Education and the Agency of Human Services are failing Martha. And they are failing others with this level of need. The state of Vermont is afraid to set a precedent, that is the underlying reason that Martha's crisis is not being funded. How can sending Martha out of state be justified? It can't be. Vermont can do this. We CAN meet the needs of our most vulnerable, in a cost effective way, but not if the AOE and AHS don't work together. I hope VT builds residential schools and programs that provide state of the art care and education for our kids. Our kids are vulnerable, they need to be close to home. VT needs to keep VT dollars in VT, filling this need at home, keeping our families together, especially the 'Marthas'. We need to create this wheel. Why don't we have more options for our severely autistic children? We have the means, the resources and we certainly have the need. I hope the future includes a system to support the 'Marthas' in our state. It is fiscally irresponsible to keep sending our kids away. Here is the crux of the problem, as I understand it: VT's ACT 264 PLAN and The SYSTEM OF CARE PLAN FOR DEVELOPMENTAL DISABILITIES (the governing documents for Martha and the Marthas of VT) were created with the mission "to make Vermont the best state in which to grow old or to live with a disability; with dignity, respect and independence" and "that human services and public education work together, with parents, to coordinate services for better outcomes for children and families..." But they don't work together well. And our children don't have options. Act 264 can't help families, if VT lacks any infrastructure. Where does Martha fit in? Do I have to give her up to DCF custody to get her needs met? I'm confused. She won't be growing old here if she has to leave VT? Is this mission meant for the people with disabilities less severe than hers? Does her level of need fit into this plan? WHY are the most vulnerable VTers leaving VT? I am told there is 'no system to fund her home accommodations but there is a system to fund out of state residential'. I was told that when I called the Governor's hotline 2 weeks ago. I appreciate that option of out of state, I really do. But her needs can be met here (I have the ACT 264 and IEP notes to show that). If her plan can't be funded, than Martha has to move to MA, for many years, as she can't come back to VT with nothing in place for her? Is this Vermont's intention? I hope not. In the meantime, this is what Martha needs to avoid out of state residential placement... an addition off of her bedroom, approximately 500 square feet, as determined by her Psychiatrist and IEP team. It is much more cost effective than many years of out of state residential. Her IEP team and Act 264 notes reflect that we have been able to solve this issue, saving Martha and saving money. But the current system is not set up to support our children at home. This requires 'out of the box' thinking to save my daughter from leaving VT. I think VT can fix this problem. We should have a 'continuum of options' for our children, ranging from Least Restrictive to Residential. VT does not have a Residential Treatment School in VT. When Brandon Training School closed 20 years ago, VT changed its mission to include all VTers in their communities. What happens to the children who need the same amount of school based treatment to also keep their children safe and learning at home? These VT vulnerable children are leaving for out of state residential placements, that's what happens to them, and these numbers are increasing. Please provide a continuum of options in VT so that our families don't have to be separated, for all Vermont children, not just Martha. Currently, I am trying to amend Bill H.859 to include the needs of my daughter and others like her, so that may get their needs met in VT. We could access all of our VT resources and build our infrastructure from within our own state, I am hoping. I appreciate you reading this petition. Please sign, please share with everyone you can, I need as many signatures as possible to help my daughter. Please help Martha stay home. Time is running out for her. Thank you from the bottom of my heart, Kathleen Burke Kourebanas (Martha's mom) Essex, VT
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