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Andrew and Ben – identical twins – two very different lives

“Democracy does not guarantee equality of conditions – it only guarantees equality of opportunity.”
I am the mother of twenty three year old identical twins. Benjamin graduated from college with honors and is currently employed in China. Andrew’s condition is not equal. He is a person with autism who lives at home with his parents. To date, Andrew’s opportunities have been given to him in the form of public programs.

At 18 months, Andrew was diagnosed with autism and entered an early intervention program through the public schools. This was our families’ first experience with the public programs the disabled. Once enrolled, Andrew was given the opportunity to learn, to grow socially and eventually to gain community and job skills.

In 2007, our family relocated to Delaware. In his last years of public education, Andrew was able to focus on skills helping him transition to work. He volunteered at our local hospital working in the pharmacy were he performed jobs such as separating serrated sheets of unit doses of pills and cutting labels, tasks that “normal” employees of the pharmacy found tedious. In 2010, the pharmacy provided Andrew with the most valuable opportunity of his life. Andrew was hired as a Pharmacy Assistant in a 20 hour a week benefitted position. Andrew is proud to go work each day and enjoys the independence it affords him. He understands he makes his own money. This summer Andrew took a beach vacation paying for himself, his sister and her son. This made him very proud.

Although he is happy at work, Andrew’s skills at self determination are limited by his disability. He does not understand what it took to get job nor does he understand what he needs to do to keep this job. If left to self- determine, he would be at home surfing the internet and watching Disney movies on TV. At work, he requires supervision due to lack of social and/or intuitive judgement skills. The opportunity for Andrew to work is again the result of a public program that provides funding for supervision. Without this, he would be sitting at home.

We have one more opportunity that Andrew has yet to realize and our most challenging so date. This is the opportunity to live in a group home which is the option that we see as best meeting Andrew’s needs. Andrew expresses frequently that he wants to be independent of his parents. The need for independence is the sign of a well adjusted person, with or without disabilities. Finding a house is easy. Finding people to support him in that house is not. Complicating this is the fact that he has a stable life in an upper middle class family. This means the chances of him receiving the funding will probably not happen until we die. For Andrew, this is too late. My husband and I are in a position to offer him some financial support. However, we would not be able to sustain this support over his life time. As the public system stands today, it is all or nothing. Staffing is either completely paid for through public programs or not at all. I hope for the opportunity of a hybrid system allowing families like us to contribute to this support as we are able.

Andrew has been blessed with many opportunities through public programs, opportunities that he would have missed without them. Although Andrew and Benjamin do not have the same equality of condition, they have so far had equal but different opportunities. We hope and pray that this equality continues throughout Andrew’s life and are willing to fight and advocate so that they will.

Permanent link to this article: http://www.familiesspeakingup.com/2013/01/01/andrew-and-ben-identical-twins-two-very-different-lives/

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