My name is Kathy Bunce. I have three wonderful children, two sons who are successful and active in sports and their community. They have much to offer our family and one day, the world. My daughter, Samantha, the eldest, is friendly, happy and active as well. She also has significant global developmental disabilities, across all areas. Samantha too, has much to offer the world.
Samantha attends Summit Educational Resources, a school for children with complex developmental disabilities and autism. She is 17 years old, non-verbal, and has a 1:1 aide for safety. She is delightful, yet still a child, intellectually like 3 year old, with uncontrolled seizures and needing help with eating, dressing, toileting, medication and other personal care.
At 14 months old, our developmental pediatrician doubted that therapy would help. We disagreed. Now she no longer hits her head on the walls and floors when she is frustrated. She can walk and run, and has a few words to tell us what she needs. She has friends and relationships with people beyond her family, and is safe and happy. She meets people wherever she goes. She has much to give the world.
We are grateful for respite that enable us to work, attend activities with our sons, and occasionally go out to dinner like other families. Sadly, families now wait for up to 6 years for respite. There isn’t enough funding to meet the need.
Without a diagnosis, we do not know what her future holds. Only 12% of individuals with disabilities are working in NYS and Day programs are disappearing.
Samantha is not toilet trained, cannot say her name, cannot dress herself.
Who will give her a job?
How will she spend her day?
Will she be safe? Will she be happy? Will she have friends?
Will her life be meaningful?
Currently more than 12,000 people throughout NYS are waiting for a home, 1000 are from WNY. Where will they go? There are no homes staffed to meet the high behavior needs of kids like Samantha and her classmates. Families are exhausted, and I am concerned that NYS has forgotten about them.
I am here today to advocate for them… those who cannot self-advocate, who are behavioral and grossly underserved, and who need your help most of all.
NYS spends $52 Billion dollars Medicaid services. Surely we can do better. We need to change our systems, re-prioritize, create more flexibility and fewer one-size-fits all programs. Most are unsustainable, and individualized, at the expense of social interaction, impossible to achieve economies of scale.
Underfunded respite and family support programs will lead to more children being abandoned. Afterschool care is critical to working families. Crisis services and on-call behavior teams will reduce the number of children becoming homeless and living in hospitals. This is happening today.
We need more creative options, and my written testimony outlines a few ideas that I would like to share. By serving groups instead of individuals, families can get a break, re-energize, or attend to family needs, and individuals will have opportunities to find their own relationships.
I am here to advocate for my daughter, Samantha, and for her friends at Summit who have autism and complex disabilities.
I am here to ask you if we are doing enough… I ask myself this question every day.
When you are making critical funding decisions, please remember Samantha and her friends. They depend on you to help keep them safe and offer them the same quality of life you want for your children.
Thank you for the opportunity to share my thoughts with you today.