Losing My Freedom without Advanced Home Health Aides

It may sound like breaking news to you, but to the disability community, it is no surprise that the creation of Advanced Home Health Aides (AHHA!) would dramatically increase the independence and freedom of people with disabilities who are being forced into institutions because they are not able or willing to self-direct attendant services. This is not a new discovery. We have been working hard to support the full integration of people with disabilities into the community for a very long time and we are extremely close to achieving this huge civil rights victory in New York State. The only thing in the way is the NYS Senate and without their support, people with disabilities will continue to be institutionalized.
Some of you already know my story, I have told it many times before. When I was 15 years old, I was forced into a nursing facility. I fought long and hard for many years to gain the independence I have today. After being denied several times for attendant services that would support my freedom, I was finally approved and able to leave the nursing facility when I turned 21 years old. But what you may not know is I fear every single day I will end up being institutionalized once again.
I am currently receiving Consumer Directed Personal Assistance services (CDPAS). As a consumer of CDPAS, I am able to hire, train, supervise, and fire my own attendants. This works perfect for me in my life today because I am willing and able to self-direct this service. My attendants support me in everything that I do. They help me with all of my medicines including some tasks that normally a nurse would only be allowed to perform. With the right training, my attendants are pretty much allowed to help me with anything I need medically.

But here’s a reality I am forced to face: I have a progressive disability called Spinal Muscular Atrophy. As I get older, I will become weaker and I will significantly need more support than I have today. In the 24 years I have been alive, I have already lost many functions. This is only going to continue for me. I will most likely no longer be able to feed myself, drive my wheelchair, or even breathe on my own. I will probably also not be able to move or speak one day. These changes will undoubtedly be hard for me to adjust to but it most definitely is not something I fear.

My involvement as an activist in the disability community has taught me to love my disability. It has taught me that there is nothing wrong with having a disability. It has taught me that there is no disability hierarchy; a disability is no greater or worse than any other disability. My greatest fear is that I will continue to be oppressed and forced back into an institution when I am no longer able to advocate for myself.

It is extremely important for me to know that when I lose these functions, I will not also lose my freedom and independence. Without the creation of AHHA, I do not feel confident about this. I have lived in a nursing home (I use the terms ‘lived’ and ‘home’ loosely) and I know for a fact this is a place people are being forced into. Institutions are NOT homes. They are prisons. People with disabilities are being abused, raped, and forgotten in these places. You don’t get to live your own life. You’re treated as a criminal. This is wrong. It is wrong to imprison people just because they have a disability. Having a disability is a beautiful thing and it is most certainly not a crime. It is time that we recognize it is a civil right for people with disabilities to live in their own homes, and without AHHA, we will never accomplish this.