A Sibling’s Experience at the Disability Policy Seminar

2014DPS_Sponsors_Color

DPS 2014 sib meet and greet

Siblings at the 2014 DPS Meet and Greet

By Angelica Davila, a family discipline trainee for the Illinois LEND (Leadership Education in Neurodevelopmental Related Disabilities) 

I was part of the Disability Policy Seminar in Washington D.C. this year. Like my fellow LEND trainees, this was my first year attending the conference, as my name badge proudly proclaimed with its “First Timer” ribbon. While the policy seminar did not officially begin until Monday, I arrived on Sunday in order to attend the trainee symposium that evening. This in itself was useful, since it allowed all of us attending to go through mock legislative visits. It was also beneficial meeting trainees from other states. The connections made during the policy seminar were vital, as they not only opened up new perspectives, but also new resources.

A few of the highlights from the week’s seminar included a surprise visit from Senator Tom Harkin  (D – IA) on Monday. Chairman of the Health Education Labor and Pensions Committee, and an avid supporter of the CRPD (Convention on the Rights of Persons with Disabilities), his speech evoked many feelings throughout the crowd. I know it certainly made me feel like I was a part of something bigger. Though this will be his last term, as he is retiring, the overwhelming feeling amongst the crowd was we could keep progressing – because we all have the ability to advocate for people with disabilities.

I also attended the ABLE Act (Achieving a Better Life Experience) concurrent session that day. The ABLE Act aims to assist people with disabilities and their families by allowing tax-free savings accounts to be opened for the individual. The funds in the accounts could be used towards education, housing, and transportation. Additionally, this savings account would not affect the individual’s SSI or Medicaid benefits. Prior to this session, I was not aware of this piece of rising legislation. Should this pass; it would be beneficial to many families including mine.

Tuesday, I kicked off the day by attending the Meet and Greet Breakfast for Siblings hosted by the Sibling Leadership Network (SLN). This is the first year the SLN is a co-sponsor of the Disability Policy Seminar and it shows how the sibling voice and perspective is being valued.  The turnout for the breakfast was amazing and from what I heard bigger than the previous year. Not knowing many other siblings of people with disabilities growing up, this was a one of a kind experience. We shared many similarities and yet each of us was different. We all had different experiences, but having a place to share it all, had a uniting effect. We all essentially had the same goal, which was to be advocates for our own siblings with disabilities and each other.

During the Tuesday luncheon, members of SABE (Self Advocates Becoming Empowered) addressed the seminar’s attendees. Their message was an important one, communicating how this is a place where everyone is welcomed. It was a place where self-advocates were invited to be a part of a bigger team because we could all learn from one another. I had not seen any other place where self-advocates had as much voice as a parent or even a sibling, and especially not a professional in the field of disabilities.

On Wednesday, I attended meetings at Senator Mark Kirk’s (R- IL) office and Senator Dick Durbin’s (D- IL) office with my fellow LEND trainees. It was intimidating at first since it was my first time meeting with any legislator’s staff. Going in with a group was helpful, and I became more comfortable as we each took turns telling our story and thanking both IL senators for the support that they have given the Reauthorization of the CAA (Combating Autism Act). Meeting with the Senate staffers gave me the confidence to want to do it again in the future.

Attending the Disability Policy Seminar in Washington D.C. is an experience that I highly recommend to others. You will be able to connect with other siblings, parents, self-advocates, and professionals that are just as passionate about disability advocacy as you. It’s a place where you can exchange personal stories and also engage with panelists regarding their policy’s information.

The entire experience prepares you for when you finally walk into your senator’s and/or representative’s office to discuss the policy you are promoting, to share your stories, or to even thank them for their support in an issue that is important to you. It strengthens the advocate in you. I know it did for me and now I cannot ignore the role I play as a sibling advocate.

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