2008 AUCD Trainees at the Disability Policy Seminar

February 5, 2008

AUCD Trainees at DPS 08

Over 70 AUCD trainees attended the 2008 Disability Policy Seminar in Washington, DC, where they learned about current policy issues, heard from legislative experts, met people from around the country with and without disabilities, and networked with trainees from other AUCD member centers. Read more about the event here.


Aieya Jean-Francois, WIHD LEND, New York

Aieya at the 2008 DPS
Aeia and WIHD LEND trainees visit the Hill

During our meeting, we thanked Senator Clinton for introducing, along with Wayne Allard (R-CO), the Expanding the Promise for Individuals with Autism Act (S. 937). This bill authorizes funding for demonstration and state planning projects to expand on services and supports for children and adults, grants to expand post-diagnosis care and minimize delays in getting services, and interdisciplinary training for people who diagnose and treat people with autism.

I do look forward to maintaining some of the contacts that I have made and hope to attend next year's seminar. I also look forward to keeping abreast of the issues that affect the disability community in the interest of occupational therapy and all that we have to offer as well as gain as a result.

Populations who are vulnerable need people to advocate for them and it would be remiss of me as a professional, to simply work in the field of OT and not have my voice heard which would represent those who I help. I have long been associated with the developmentally disabled population, having grown up with disabled individuals and having worked with them. I also see the literature which shows this group of people having the least amount of representation. In using the word 'representation', I mean there are medical issues that go unnoticed and unaddressed, there are abuses that take place which are unreported, and there are people who don't get to interact socially; as a result, these people tend to have a poorer quality of life as compared to their able bodied/ non-disabled counterparts.

Thanks for hearing my voice!


Sheryl White, WIHD LEND, New York

Nisonger OH LEND trainees on the Hill

Nisonger OH LEND members and friends on the Hill:
L-R, back: Marie Crawford (Parent trainee), Erin Enright (2nd year trainee), Sen. Sherrod Brown (Ohio) and Benjamin (OH parent adovcate)
L-R, front: Michelle Self (Parent advocate), Joan Thompson (Arc Ohio parent advocate), Amy Hess (LEND staff)

As a future occupational therapist, attending the 2008 Disability Policy Seminar was a great opportunity for me to learn to advocate for issues of critical importance to people I will be serving as a health care professional. I was educated about the increasing need for change in disability policy relating to issues such as housing, direct support services, employment, and Medicaid. I came to a better understanding about the ADA Restoration Act, critical legislation because the courts have not been living up to the original intent of the Americans with Disabilities Act. As a result, the courts deny people with disabilities what should be their due. The conference was an excellent forum that helped me to comprehend the complexity and full purpose of legislation beneficial to people with disabilities and their families. The reauthorization of the Developmental Disabilities Act is an example, which provides funding for State Grant Programs like Councils on Developmental Disabilities, Protection and Self Advocacy Systems, University Centers for Excellence (UCEDDs), Family Support, and Projects of National Significance. What I found most inspiring was meeting and speaking with so many people who came to advocate for themselves, along with their families, not hindered by their particular disability but empowered to seek what they want and need.


Samantha Marsh, Former LEND Trainee, Virginia Commonwealth University

10 Things I Learned from the Disability Policy Seminar

  1. Ways that I can be more active in my political advocacy
  2. Capitol Hill Staffers really do seem to want to hear what is going on in their respective communities
  3. Champions for a cause can and do make a difference
  4. Interesting court facts that are leading to the ADA restoration movement
  5. Medicaid cuts and rules are limiting important services to individuals with disabilities
  6. Important programs like LEND are funded through departments that are in turn tied to federal and state budgets
  7. You can make a difference by not only being more involved but by being aware of legislative and political actions that are happening
  8. You can become an intelligent voter and citizen by knowing the issues and where candidates stand
  9. Great networking opportunities are present at functions like the Disability Policy Seminar
  10. LEND programs offer a multitude of experiences for people interested in the field of Disability Policy

E. Yudman, WIHD LEND, New York

I was hesitant about applying to attend the 2008 Disability Policy Conference because I knew I would have midterms that week. However, attending the conference was one of the best decisions that I have ever made. I did not know what to expect. It was overwhelming at first. So much information. So many people. I was surrounded around dedicated people also interested in advocacy; it was invigorating to be with so many great people who were as passionate, or more, as me about disability policy. I could feel an excitement all around that was certainly contagious. How could it not be? I learned a great deal at the conference, not just from the presenters, but also from each individual that I met. Each person I met had a unique perspective. I think I learned the most during mealtime discussions with the new people I met at the conference. The conference inspired me to pursue advocacy and I hope I can attend next year.

L. Severson, WIHD LEND, New York

Lessons in Washington, DC.

The DPS was an outstanding and remarkable experience that was vitalizing and overwhelming at the same time. Who knew there could be so many people supporting the same cause through so many programs, agencies, and themselves? The Disability Policy Seminar of 2008 in Washington, DC, was an eye opener and a tremendous lesson in perseverance, community, and networking. From Northern Maine, to Florida, California, and Washington, people traveled through obstacles to join together in Washington, DC, in support of innovative, positive, inclusive, and empowering systems for individuals with disabilities.

Many individuals with disabilities overcame greater obstacles, even to the naked eye, in order to share their values and opinions, perhaps only by being present. It occurred to me as I sat Monday during lunch beside a man who needed assistance with eating, that policy is not just about enacting great and inclusive laws. Policy is about educating the people who make national decisions; educating through experience and presence, perhaps because they have never experienced what it means to be humble and compassionate at meal time.


Marie Pennacchio RN, MBA, WIHD LEND, New York

As a 2007/08 LEND fellow at WIHD, I had the opportunity to be one of the 70+ fellows across the states who attended the 2008 Disability Policy Seminar in Washington, DC, March 2nd through 4th. It was an experience that I will carry with me in my professional and daily life, forever. Although many of the complex issues contained within the DD Act, Education laws, and the Combating Autism Act presented over two of the days were new to me, they were among 13 hotbeds of issues highly knowledgeable to our communities with disabilities. Trained in perseverance and possessing unparalleled compensating skills, these individuals and communities were a presence heard and felt. Some individuals wore corrective lenses, others signed, some used support devices to ambulate, others deftly maneuvered wheelchairs. As I listened to their questions for policy makers solidly rooted in their personal experiences with disabilities, my admiration for these individuals blossomed. Self advocating is not only empowering to individuals with disabilities, but it is necessary in order to affect true changes in this country.

I concluded my trip along with the 4 LEND fellows from my program with visits to the Capitol that Tuesday. As a Family Specialist within the LEND program, I was eager to meet with elected officials. Using the training I received two days earlier, I educated and shared personal success stories to reinforce the importance of continued and increased support for Early Intervention, Family Training, and an increase in LEND programs and funding.

Interdisciplinary brainstorming, goal development, and action plans were core ingredients in our family's personal success stories with our child. I am passionate about this model which is also the core of LEND, proud to have been a LEND fellow this past year, and appreciative of the opportunity to have participated in the '08 Disability Conference.


Rochester, NY LEND trainees:
Jennifer Donato
Kimberly Johnson
Kimberly Yunker
Hemant Kalia
Laurie Bausch
Megan Glaspie

We all thoroughly enjoyed attending the 2008 Disability Policy Seminar! The experience increased our knowledge of disability policy and how we can go about affecting policy. The policy update sessions were extremely helpful, as well as the discussions about lobbying and how to make an impact on the legislators. The initial update session was a lot of information, but provided a great base for the remainder of the conference. The break out sessions provided much more in-depth and concentrated information on specific areas of interest. These provided us with supporting information to assist with increasing understanding of each of the issues.

Going to the Hill itself was an overwhelming and exciting experience. We were able to meet with staff in Senator Clinton, Rep. Slaughter, Rep. Reynolds, and Rep. Walsh's offices. The staff were all welcoming and open to hearing what we had to say at all of the offices. We spoke with the staff about the Medicaid moratoriums, the autism bill, the legislation supporting AUCD and LEND programs, and thanked them for anything they were currently supporting. We left information sheets at each office for all of the different topics that were covered. We also stopped into Senator Schumer's office, but were unable to meet with any staff members. We left information for him to review on all of the topic areas. All of our experiences with the legislators' offices were positive. We were able to meet with several staffers, and were able to ask for support for the different issues we discussed. The Hill was a great experience, and we all left feeling good about our contacts.

The experiences we had with AUCD while we were in Washington, DC, were all wonderful as well. We enjoyed the reception, as it was a great opportunity to meet other LEND trainees and AUCD staff. We all very much enjoyed having the opportunity to go out for dinner on the second night with other LEND trainees. This was a great opportunity to network, and have some fun together as well.

The conference had an effect on all of us. For me, the conference strongly influenced my desire to increase my involvement with policy, both locally, and nationally. Thank you again for all that you did for the LEND trainees that were present at the conference. It was a great event!


Melissa Renzi, Waisman Center LEND, Wisconsin

The 2008 Disability Policy Seminar provided me with a great deal of new information about national disability issues. I gained a lot of new experience from my trip to Capitol Hill that contributed to my leadership goals.

The conference opened with a plenary session that offered some pragmatic yet inspirational messages. The speaker emphasized the importance of "laying the groundwork" for the next Congress in a bipartisan manner. That is, much of the advocacy done now may not have an immediate effect, but will help to pave the way for future decision-making provided that advocates continue to contact their legislators. Furthermore, he stressed that disability is not a partisan issue. Disabilities affect all people, and thus, should be framed this way in order to achieve bipartisan support and improve political feasibility.

On Sunday evening, we attended the AUCD trainee reception and then had dinner afterwards with two former LEND trainees, Crystal Pariseau and Aaron Bishop. Speaking to Crystal and Aaron offered some insight as to just how completing the LEND program contributes to our leadership development. Both Aaron and Crystal appeared to be great models of inspiration of what types of leadership opportunities exist for former trainees.

On Tuesday, I met with both senators' staff members regarding housing issues. I was really nervous even though I had done legislative advocacy before with state legislators. Our group noted that throughout the DPS there seemed to be minimal discussion about the opposition for the policies we were going to present, and I think my lack of extensive knowledge factored into my anxiousness. When I have made visits in other circumstances, I was very familiar with my issue and even more familiar with the opposition. I think this is essential to conducting policy visits. Moreover, it is critical becoming an effective policy advocate.

Nonetheless, my policy visits went fairly well. In my first visit with Senator Kohl's office, I believe I was able to communicate the message clearly. My second visit went a little less smoothly, but the staff people were both receptive. While I do not feel as though I developed the necessary confidence for these visits, I definitely gained a valuable lesson in how to proceed with future visits. I learned that I have to really know an issue "inside and out" in order to speak articulately and candidly in contentious situations.

Overall, my experience was dynamic and brought me a few steps closer to my goals. As I mentioned in our LEND seminar, the organization of the conference was amazing to me. The wealth of information, powerful speakers, and networking opportunities really demonstrated to me how an otherwise very vulnerable group of people can actually have power in the system. Though it may seem relatively small, collective voices are actually quite powerful.