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Lindsey Nebeker Addresses the IACC

April 14, 2011 4 comments

This post reflects the remarks Lindsey Nebeker made at the April 11 meeting of the Interangency Autism Coordinating Committee (IACC).  Lindsey and her brother both share an autism diagnosis.


Members of the Committee: I would like to thank you for providing the opportunity for me to share my testimony with you today.

My name is Lindsey Nebeker, and I am personally representing myself as an individual with autism.

Let us open an additional conversation into the topic of safety.

As I have shared in my past comments to the Committee, I have a younger brother, James, who also has autism. Although he and I share the same diagnosis, our experiences growing up and where we have ended up sets us far apart.  Due to the severity of James’ condition, his needs for services have been far greater.  In 2000, at the age of 16, James was placed in a group home under the care of full-time staff, due to my parents’ aging and limitations regarding their strength to care for him.

As of now, in his current residential placement, James appears in good physical health and my family trusts that he is being treated well by his caretakers.

So what would lead me to still be concerned?

When my parents die, I will become my brother’s legal guardian.  I will be holding the responsibility of ensuring his care, his safety, and his well-being.  As a woman in my 20s, I am already planning how he will be spending the rest of his life.  I am anticipating the possibility of his government funding being cut, and the possibility of him being placed somewhere else.

James’ home is nearly 2000 miles away.  This makes it extremely difficult for me to be able to monitor what goes on in his home or how his days are spent …  and it goes beyond his tendencies to wander.

Safety does not just refer to protecting the adult while outside the home.  Safety also refers to how an adult is treated inside the home.

The New York Times recently published an article on a yearlong investigation into more than 2,000 state-run homes in New York.  During the investigation, The Times retrieved a long list of accounts of sexual abuse, physical abuse, discrimination, and other dehumanizing behavior: around 13,000 allegations of abuse in 2009 alone.  Times that by 50 for each of the 50 states, and you have a possibility of 650,000 incidents (give or take) of abuse to adults with developmental disabilities (including autism) across the United States in 2009.  Fewer than 5% of those incidents got reported to law enforcement.

In most of these cases, “Employees who sexually abused, beat or taunted residents were rarely fired, even after repeated offenses, and in many cases, were simply transferred to other group homes run by the state.” (New York Times)

It would not be surprising to hear if a high percentage of these incidents involved individuals who do not speak or has a difficulty in communicating.  As one of the law enforcement officials admits during an interview: “It’s a hard road without a confession by the defendant.” (New York Times)

In spite of the incidents, there are many caretakers who have passionate hearts, perform the best that they can, and treat their adult clients with respect.  They are often underpaid for their efforts and their service.  However, many can still benefit from effective training protocols and learn better approaches to respecting the needs of adult clients with autism and other developmental disabilities.

How can research help this issue?  Two ways:

First, research can help determine what training is most effective and what needs to be done to establish stricter requirements for the employees who work in state-run and private-run residential programs.  Residential programs can also train employees on the importance of integrating community and inclusion-based activities as an essential tool in living a full productive life for individuals with disabilities.  A list of specific areas of focus are provided in the written copy of my statement provided to the Committee.

Second, research can help the individuals with limited or no language skills communicate more effectively, so in the event they do run into a violation of their personal safety, they will know how to communicate it to loved ones, law enforcement or other authority.  Effective communication is also a crucial component in building self-determination.

Until there are additional breakthroughs made in effective communication methods, James (who is still unable to speak or use a communication device) is not able to tell my parents nor myself what has occurred during his day, how his staff treats him, or if his rights are violated.  While we have no reason to believe that James is in any kind of current danger, it is an issue that will always concern us as long as he lives.

——–

I would like to close with the following thought:

If there is one thing that unites us as a community, it is this: providing the best for our individuals with autism, and ensuring their happiness.

Ideally, research that is dedicated to ensuring a successful transition for adults with autism into the community will replace the need for institutions and group homes.  But for now, we must find a way to ensure the adults living in these residential programs their safety, their sense of purpose, and sense of belonging.

There is no reason, given the right accommodations and support, that every individual can’t participate in being a citizen: the thing that defines us as people who have a role in society.  As an individual living with autism, I can testify to that.

What connects my brother, myself and all of us is that we are human.  And as humans, we have the capability to recognize when we are of worth and when we feel belonged.  The least we can ask is our basic human rights: to be treated with dignity and respect.  But it is nearly impossible for a person to know their own self-worth when that person is not surrounded by others who can teach that person their rights to dignity, respect, and self-worth; to ensure the thousands of adults in residential placement a full quality of life.

So I encourage you, as we continue our conversation on many important issues, regardless of the issue, that you continue to remember your influence and your roles as members of the Committee, and the potential you hold for initiating and providing those who will become adults and those who are already adults one step closer to achieving what could very well be the most important basic human right:  the right to have a voice … a voice which holds the key to full inclusion in the human race.

Lindsey Nebeker

April 11, 2011

Read a recap of the April 11 IACC meeting.

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