Desiree’s Q&A with Amy Sequenzia, Autistic Self-Advocate and Poet
As the conversation develops on the Autism Housing Network, it is imperative that we highlight the voices of autistic adults and others with developmental disabilities. I thought a good way to start off my month of site visits and interviews would be to ask one of my favorite bloggers some questions about her experience in housing and continued support. The following is a Q&A with Amy Sequenzia, autistic self-advocate and poet:
- Q: Please explain a little bit about your current living arrangement and supports.
A: I received HCBS (Medwaiver) funding, which in Florida is not necessarily good. The state does not provide enough community support or allows us real choices. But I am lucky that I have friends who are my life sharing partners. They own a house but it is OUR home. The funding I receive pays for my expenses and my share as a roommate. They support me with all I need. They make sure I can have the life I aspire to and they are happy doing what they do, because that’s what they want for their lives. It is a perfect situation. They respect my choices and goals and I have a pretty good life.Every time the government cuts funding, we have to make adjustments because the other option I would have is living in a group home and doing whatever the staff says, and without any access to my method of communication.Our home is available for more roommates but, again, the state of Florida has rules that make everything very difficult to be accomplished.
- Q: What has been the biggest barrier/s to finding your home? A: Because my friends and I had already decided about our goals, this part was easy. We had done life sharing at another state and the model was the same. Dealing with state agencies and funding is the hard part because, in the case of Florida, they are not open to new initiatives if a person receives HCBS (Home and Community Based Services) funding. Again, my friends are dedicated and they make sure I can have my own choices.Some states – and some people – have a very healthy approach to the idea.
- Q: What were the most important elements when choosing your support service provider and/or staff? Did you have many options?
A:My friends and I met a long time ago, and we had the life sharing experience, so it was easy to decide which supports I would need. Options are hard to find where I currently live and we have to be creative and make things happen in a way that I can at least try to accomplish my goals.
- Q: Many parents fear that there are not enough options and availability of funding for the future support needs of their son/daughter. In response, they have started to create self-sustainable (through microenterprise) and private-pay (for those who have the financial capacity to do so) intentionally planned communities, similar to CoHousing or Eco-Villages. Some are neurodiverse, and others only provide residential options to those on the spectrum or I/DD. There has been criticism by some that these communities are segregating. In your opinion, what makes a person feel ‘segregated’? What advice and/or suggestions would you like to give to these parents?
A: When options are not many, it becomes tempting to settle for less. One of my concerns is that, in the name of safety, closed communities might become unsafe, unseen. I went to a segregated boarding “special” school and I can say that abuse and cover up do happen.The idea of sharing a house, making it a home, is a good one. It does not have to be in a closed community. It can mean several houses spread throughout the town or city or county. Besides, non-disabled people will only be educated if we are living among them. Acceptance. Belonging.
- Q: Do you have any advice for young autistic adults who are transitioning to life on their own?
A: Know your rights and fight for them. Even if you need help, even if you need a lot of help…this is not what defines your worth. You are worthy and valued and as an adult things might seem harder. Sometimes they are. But if you know your rights, you can fight to have the supports you need. Maybe you want to join a self-advocacy group, or create your own activism group. There are lots of very active autistic advocates who are ready to embrace any Autistic who is a proud one.
More information about life sharing:
Intentional Community: http://www.cadmuslife.org/
Service Provider: http://www.skillsofcentralpa.org/public/services/lifesharing.php