Julie H. California

Advocacy for Autistic Adults

A letter from a sister of an autistic adult urging the next President to address the lack of quality care and support for millions of developmentally disabled Americans.

Dear Future President,

One night in November of 2014, my family received a telephone call from the Los Angeles Police Department. The officer asked if we knew a female disabled adult, and my father, hearing screams in the background, panickedly told the officer that, yes, he has a daughter, Gina, who is severely autistic. The officer then informed by father that he had found my sister alone on the side of a freeway, confused, screaming and sobbing in distress. Gina, who lives in a group home and has extremely limited verbal skills, miraculously was able to tell the police officer our family’s home phone number, which was drilled into her by my parents when she was a child. Although we are forever indebted to the police officer who saved my sister’s life, to think of what could have happened to her, and how scared Gina must have been haunts my family and me to this day. It was one of the worst experiences of our lives.

As the facts of this incident unraveled, we learned that my sister, despite supposedly being in the care of trained, competent caretakers, was somehow able to wander out the door and walk approximately half of a mile to the freeway. The most egregious part of this story is not even that the caretakers did not notice that Gina was gone, it is that when they did notice, they did not call the authorities, preferring to search for her themselves in the neighborhood. And, if they had found her, undoubtedly no one would have ever have known.

Yet, these very same caretakers who put my sister’s life in danger are still in charge of her today. This freeway incident is the worst of many other terrible occurrences under their supervision.

The state agency that outsources my sister’s care is the Regional Center. Regional Centers are contracted with the Department of Developmental Services in the state of California. Despite the fact that the Regional Center’s mandate is to "provide supports and services for citizens with developmental disabilities”, when told of the freeway caper, the Regional Center’s position is that they are not responsible for the actions or inactions of their vendors. Then who is? My sister’s vendor is being paid huge sums of taxpayer money -- well into five figures -- monthly, while the state, who gives them that money, just looks the other way. The staff are poorly trained and barely supervised, and there is absolutely no accountability for their actions.

You, the reader, might ask, why don’t we, her family, just move Gina to another home? The answer is that homes don’t exist. My parents have made it their primary cause to find my sister quality and competent care, but homes are incredibly difficult to find, especially for someone who is severely afflicted by her disability as my sister.

So, despite the money coming straight out of the pockets of hardworking Americans, Gina is still unsafe and poorly cared for because there are no alternatives. Please, Mr. or Madam President, establish a system that provides quality support for people like my sister with trained, dedicated staff and establish an accountability system to ensure that they actually are receiving the care that they deserve.

Another possible solution to this issue is to establish safe centers for people with developmental disabilities. I urge you to consider reopening developmental centers -- but not in the way that they used to be where people were locked up and forgotten about. We must make developmental centers that are large, friendly campuses that have dormitories, cafeterias, gyms, and other activities such as yoga, cooking, art, and, most importantly, with people who are trained, dedicated, and supervised.

Mr. or Madam President, I worry for the safety and happiness of my sister. She is one of the millions of adult disabled Americans who have grown out of the school system and are left with nearly no quality options of support or care. Many of these people are forced to spend the rest of their lives with nothing to do and no one taking care of them. Just because developmentally disabled people cannot speak for themselves and give a voice to this issue does not mean that these injustices are not occurring. We must be their voice. We must ensure that they have the quality of life that ALL Americans -- regardless of one’s capabilities -- deserve.

I urge you to make this issue a priority. Thank you for reading, and I wish you all the best in your presidency.


Julie Hartman 

Marlborough School

AP World History Period B

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