Andreas has Friends in the Community and Proudly Votes in Every Election!
June 19, 2017
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My 43 year old son Andreas is an American citizen, born abroad in Taiwan. I brought him back to this country when he was 10, seeking good special education and medical care. He has Angelman Syndrome (AS) (definitely a pre-existing condition), caused by a mutation in a very small piece of his genetic code. This means that he has high support needs and can't be left unsupervised. He requires help with most areas of daily living -- dressing, going to the toilet, bathing, preparing food, and particularly communication. People with AS can't speak, although their comprehension can be very good. When he was 15, we discovered he could read, and with support and encouragement, he can type his thoughts. Since he can communicate his ideas, he is his own guardian, although I have Power of Attorney for medical care. At that time I was caring for him as a single parent and attempting to work full time - something that proved to be impossible. Then Andreas became one of the first children in Vermont to get a Medicaid Waiver to provide funding for his care. When he became an adult, he transitioned seamlessly into community services. He has friends in the community, and he proudly votes in every election!
Andreas' life, especially since he got his dedicated direct support provider, Jason, has been exemplary. Jason has been with him for 12 years now, and has said that he will be there for the rest of Andreas' life. There is no greater gift for a family than knowing the future is secure. That security, though, depends on the continuing availability of funding under Medicaid for long-term care. The current worries have had an impact on families, even before anything goes away. Within this year, two fathers of adult sons and daughters with Angelman Syndrome have killed their children and then themselves--one just two days before Father's Day. There is no greater fear than thinking of a son or daughter alone, without adequate care, stability, and love.
Susan Yuan is the 74 year old mother to Andreas, a 43 year old adult with Angelman Syndrome living in Vermont.
