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OBSERVATIONS ABOUT EXISTING GROUP HOME OPTIONS AND WHY I FEEL THAT MY SON DESERVES BETTER

BuildingABetterGroupHome.org was created to address the dearth of acceptable placements for developmentally disabled autistic persons. My son, Jackson, has autism, ADHD combination which means that he is hyperactive and inattentive and is mild to moderately mentally retarded. As a parent, I did not want Jackson living at home until the end of my life. I did not want to thrust the responsibility on his siblings. I felt it was imperative that he have a life separate and apart from his family so when his father and I pass away, he will already have his own home and an independent existence. My hope is that he will be able to sustain a happy, independent life as an adult.

As a young teen, I had Jackson placed in a group home for approximately eight months and moved him to a different placement for approximately one year. I then brought him home where he has lived continuously thereafter. I observed that the lack of qualified staff was the largest issue. Staff was paid the minimum wage, were independent contractors, getting no benefits, vacation or sick time or health insurance. The turnover rate was high. When staff gained experience, got to know the routines of the home and residents, they quit for higher paying jobs.

In both homes, no one prepared healthy food. Processed frozen food products were heated for meals. Frozen or canned vegetables were substituted for fresh. Fruit rolls from a box were served in lieu of fresh fruit. In neither home was there any person who knew how to cook.

Jack had a very sedentary life in both houses. An activity had to be free or inexpensive so as not to cut into the profit margin. Walking around the block or to the shopping mall or Walmart constituted an outing. For the most part, he sat and watched television or played on his computer. On the alternate weekends when we did not pick him up for a home visit, I was informed that he sat in the living room waiting…just in case we unexpectedly showed up.

It has been four years since he left the last group home and absolutely every time he is informed that he is going somewhere, he verbalizes his day’s schedule before he leaves that house to confirm that he will always return “to Jack’s home.”

My concern for Jackson’s future is no different from that of any other parent in the same position- and there are a lot of parents in this position. According to the Center for Disease Control (CDC), the numbers of persons diagnosed with autism has increased 119.4%. In 2000, the ratio of prevalence of autistic individuals was 1 in 150; the latest CDC ratio in 2014 is 1 in 68. Approximately, 1% of the world’s population or more than 3.5 million Americans are on the autism spectrum. Autism is the fastest growing developmentally disability in the United States. Obviously, not all autistic persons will need to live in a group home but many will. Every parent wants the best for their child and the goal of this nonprofit is to create a happy, loving, stable, healthy and active home for my child but also to create a transferable model to pave the way for the creation of a similar home for yours.