My JP Kennedy Jr. Public Policy Fellowship

February 2015 – February 2016

There is almost a direct relationship between the quality of life that people have and the actions or inactions that take place in public policy, particularly for the disability community.   More specifically, as in my case, public policy for those with an intellectual disability is critical to our wellbeing because this minority was, until quite recently, overlooked and under appreciated by society at large which leads to a lack of legislative support.  In my struggle to realize my full potential, and the potential of many others in the intellectual disability community, I took seriously the position and status granted by my selection to serve as the first fellow with an intellectual disability in order to help better the lives of many. 

My yearlong fellowship consisted of two phases: first, on Capitol Hill; starting in February 2015 with the Ways and Means Committee  https://waysandmeans.house.gov/subcommittee/social-security/ and second at the National Down Syndrome Society (NDSS) http://www.ndss.org/ in Washington DC beginning June 2015.  Both assignments provided me with opportunities to learn, serve, and contribute in meaningful ways.  My desire to be an advocate for people with intellectual disabilities was fulfilled in different ways in each assignment.  This report serves to describe and reflect upon the experiences and lessons learned based on these two assignments as well as several other activities I undertook over the course of this past year, all of which proved to be rewarding, memorable and meaningful.

  1.  Assignment on Capitol Hill:

I started on Capitol Hill in February 2015, and worked with the Ways and Means Committee chaired then by Congressman Paul Ryan; I was assigned to the Social Security Subcommittee where decisions are made on benefits and support to people with disabilities.  I discovered very early during my assignment that working on influencing legislation is a very hard job.  My goal was to make an impact on legislation to improve the lives of people with intellectual disabilities.  I attended a hearing on Social Security and its impact on people with disabilities. Subcommittee Chairman Sam Johnson put forth a set of principles that form a commitment to addressing the Disability Insurance Trust Fund shortfall.  During his opening remarks, he said “This is a commonsense commitment to all Americans.” His remarks and those of others resonated with me and have helped me understand how to articulate the legislative goals that need to be addressed for people with intellectual disabilities.

I was tasked in learning as much as possible about Supplemental Security Income (SSI) and the Supplemental Security Disability Insurance (SSDI).  I shared my observations with the team and I suggested that we need to make changes in that legislation.  The SSI narrative is broadly focused on generic disability after the age of 18.  It assumes financial income and thus the language used does not fit the younger disabled population and those with intellectual disabilities.  By not targeting younger populations, we are missing a key step in the development process of people with intellectual disabilities to set them up for success.  The following are some of the items that need to be addressed.

The language does not distinguish between a physical and intellectual disability.  As a consequence, it is hard to get specific statistics from the Office of Disability Employment Policy. While all disabilities have things in common, we still need to know what is happening with intellectual disabilities, specifically: 

a)      Should there be a scale of severity of the disability as there is a scale with a range of resources that would make people qualified for different types of SSI? How do we make this determination and implement it?   This could be related to the Continuing Disability Review.

b)      How can we ensure employment for people with intellectual disabilities? Work Incentives are critical to reduce the expense of SSI and to give individuals more dignity and self-respect (e.g. PASS and Ticket to Work).

c)      It would also be helpful to create tax incentives for employers to hire people with intellectual disabilities.

All of my coworkers at the Social Security Subcommittee were kind, supportive, and engaged in my work.  I want to highlight the critical role of my supervisor Ted McCann.  He was very helpful in giving me opportunities that went beyond just reading about SSI.  He included me in coalition discussions and related meetings.  I understood that in all matters, a bipartisan approach is needed to get things done and make progress.  He engaged me in building coalitions.  He took the time in his very busy schedule to have one on one dialogue with me to ensure he captured my ideas and explained things to me.  I don’t think that he ever worked with someone like me, with an intellectual disability, and in spite of that I believe that we understood and helped each other very effectively.  We discovered each other’s gift and made the most of our interactions despite the tough schedule and time constraints.  

Serving as a fellow on a committee puts certain restrictions on direct advocacy.  In fact, there are a range of people with disabilities who visit the Ways and Means Committee to voice their concerns.  The toughest learning curve while working on the Social Security Subcommittee was to discover that I could not be an active voice for people with disabilities as my new role was to listen to the requirements of the groups who visited the Hill.  This change from my usual speaking role to a listening one was hard.  I have visited Senators and Representatives for many years advocating with Special Olympics International (SOI) during Capitol Hill Day and with NDSS during the Buddy Walk on Washington.  At those sessions, I spoke about our needs and hopefully made a positive impression to gain the support needed.  Now I understand how much it matters to visit and communicate with our members of Congress and alert them about our needs on a regular basis.  They are so busy with so many other constituents who visit them that we need to make sure that the message and the asks of our legislators are concise and actionable.  Doing the leg work and making it hard for our legislators to say no to our asks is critical and self-advocates need to always be involved in those interactions.

One of the highlights of my assignment on Capitol Hill was the casual conversations that I had on a daily basis.  Having a badge and an account as a staff member gave me unique opportunities for acknowledgement as a fully integrated employee.  Just by being physically present every day in the hallways of Congress, walking in and out of the buildings as a staffer was a testimonial about individuals with intellectual disabilities.   Often people would ask me where I worked.  These unplanned meetings were quite impactful as they offered me an opportunity to engage in the conversation about people with intellectual disabilities and assert our human and civil rights. I was a reminder to those around me that people with intellectual disabilities do not have to hide and we are citizens that matter.   I think those encounters raised the level of awareness of people with intellectual disabilities and affirmed that we have a role to play. We matter to both Republicans and Democrats.  Our cause is truly bipartisan.

At the end of my assignment, I authored a blog post:  Reflections by a Joseph P. Kennedy Jr. Foundation Fellow  ( http://waysandmeans.house.gov/reflections-by-a-joseph-p-kennedy-jr-foundation-fellow/)

  1.  Assignment with NDSS:

At NDSS, I served in the National Advocacy and Public Policy Center in Washington, DC. , focusing on key issues as they relate to health, research, education, outreach, government affairs, and employment.  I was included in staff meetings and I was able to communicate with all of the departments, those on site in DC, others in New York and staff working remotely. 

I experienced the unique challenges that non-profit organizations face with a small staff working multiple competing tasks while supporting a large membership at the same time.  In fact, NDSS is the largest nonprofit in the United States dedicated to advocating for people with Down syndrome and their families.

My time at NDSS was a great opportunity to delve into programs unique to Down syndrome and see first-hand how they relate to other disability groups.  I was involved in various tasks especially with the staff that works closely with the Congressional Task Force on Down syndrome.  The Task Force was established in May 2015, and is an expansion of the Congressional Down Syndrome Caucus originally formed in 2008.  It is made up of US Representative and US Senators who seek to educate other members of Congress and their staff about Down syndrome issues.  The Caucus was instrumental in passing the Achieving a Better Life Experience (ABLE) Act, and the hope is that the Task Force will continue and promote new legislative activities and public policies that enhance the quality of life for those with Down syndrome.   I enjoyed many visits to Capitol Hill, recruiting new members to the Task Force.  I attended various events with NDSS staff and saw first-hand the work that occurs behind the scenes to raise awareness and gain commitments to support the needs of those with Down syndrome and their families. 

While I was involved in all aspects of the organization’s work, including clerical work, most of my time at the NDSS was dedicated to engaging in the mission.  I would like to highlight some of the specific efforts I worked on that yielded successful deliverables:

 a) I prepared and delivered a 101 webinar about the NDSS Buddy Walk on Washington and how to prepare to meet with Congressional members in support of specific NDSS needs,  

b) I prepared and delivered a webinar on how to include self-advocates to serve on the Board of Directors of each state affiliate,

c) I provided testimony to the Advisory Committee on Increasing Competitive Integrated Employment of Individuals with Disabilities (ACICIEID),

d) I conducted an interview about the ABLE Act with the President of NDSS and the Vice President of Advocacy & Public Policy posted on NDSS Facebook,

 e) Together with others, I recruited new Congressional members to sign up for the Down syndrome Congressional Task Force.  However, (more Senators are still needed),

f) I led the effort on employment activities and wrote a resource guide to encourage employers to hire people with intellectual disabilities and specifically adults with Down syndrome.   Employment is critical in giving adults with intellectual disability dignity and respect.  It is more than just a pay check.  I want to thank Vanessa Quick and Jay O Bhargava for their guidance in writing and completing the employment guide entitled “Valued, Able & Ready to Work – Employing individuals with Down syndrome”.http://www.ndss.org/DSWORKS/NDSS-Employment-Resources/Resources-for-Employers/

 I hope that my contributions will strengthen our cause and have a positive impact on the lives of people across our nation (those with and those without disabilities).  I would like to see inclusion, dignity, respect and equal rights as the norm and not the exception; in fact it’s what I said in a meeting where I spoke about competitive employment on behalf of NDSS with the Department of Labor.

I want to thank all of the NDSS staff; they were supportive and happy to have a person with Down syndrome working closely with them.  I want to especially thank President Sara Hart Weir, her assistant Kandi Pickard, Vanessa Quick, and Ginny Sessions Siller; they all worked more closely with me and took the time to engage me in meaningful projects.  In addition to the staff, I also had great mentors who supported me in my specific activities; these were young interns with interest and/or experience in the Disability Community.  Camille Franco, Jay O Bhargava, and Emily Ford were all instrumental in making my fellowship a success.   I am grateful for the candid interactions we had visiting Congressional members, working on public awareness and outreach, and representing NDSS by attending health conferences and disability meetings.   

  1. Related Activities

The Fellowship also offered me opportunities to continue and expand my advocacy activities with Special Olympics and other disability organizations who requested that I participate in specific events.  At most events, I also delivered keynote speeches.  I will just briefly mention those events and will elaborate a little more on the Special Olympics World Games since I am a Sargent Shriver International Global Messenger (IGM).

a)      Special Olympics World Summer Games 2015:  The World Games in Los Angeles were a thrilling experience.  I had key speaking roles during the Opening and Closing Ceremonies in the LA Coliseum with thousands of athletes, volunteers, staff and fans from all over the world.  I also gave the thank you speech to families from over 165 countries on Family Day with the Shriver family, Vanessa Williams and the Mayor of Los Angeles, CA.   I also had opportunities for interviews with the media and interactions with people from all over the world. The Special Olympics World Games are a milestone in our movement.  They showcase us to the world as capable people.  The vision of Eunice Kennedy Shriver, founder of Special Olympics, is to use sports as the playing field to bring people together and see what makes us more alike than different. So as an IGM, I continue this vision of Eunice and Sargent Shriver.  I will continue to work hard to make our movement stronger and have an impact on the lives of people across our nation and all over the world.  Special Olympics is more than winning and getting medals and awards.  Special Olympics is a movement that fosters inclusion and respect.  It is what Tim Shriver calls “The Dignity Revolution” to change the way the world perceives people with intellectual disabilities and for all of us to discover what matters most. 

b)      Other Special Olympics events:  In preparation for the World Games, I participated in the IGM training, spoke at the Bank of America Leadership Conference (Bank of America was the sponsor of the IGM training); and interviewed with ESPN and VOA.  I was also the keynote speaker for two Special Olympics Virginia (SOVA) events: the Knights of Columbus Polar Plunge, and at the Torch Run.  In addition I briefed the SOVA Board Members on my World Games IGM experience and my JP Kennedy Jr. Fellowship.  I also participated twice in SOI Capitol Hill Day (CHD) in 2015 and in 2016.  I was a team member working on the strategic planning for CHD with the Global Development and Government Relations team.  

c)      Speaking events at schools in Fairfax County, VA:  I spoke at Oakton High School with Best Buddies/Special Olympics Swim team; and at Flint Hill School (FHS).   As a result of those events, a FHS student is doing an internship with Special Olympics Northern Virginia and many of the students are volunteering at athletic events and signing on the R-Word Pledge Campaign.

d)     Down Syndrome Associations events:  I was the keynote speaker at the World Down Syndrome Day (WDSD) 3/21/2015 in Lexington, KY.  I participated in a workshop for families and celebrated WDSD with media interviews and local events. In January 2016, I was the keynote speaker for the Down Syndrome Association of Greater Richmond at their conference entitled, “From PossAbilities to Practical Applications” in which 350 teachers, educators, other professionals and families participated.

e)      Media activities:  Jordan Allot from In Altum Production asked to interview me and later produced “The Advocate, David Egan (a Moment of Hope)” in partnership with Moments.org and American Values (https://www.youtube.com/watch?v=tT0Yp9YnYlc) (www.davideganadvocacy.com/)  Also, together with a friend with Down syndrome, I was interviewed by Amanda Lukoff with Thorough Productions.  She is creating a documentary about the –R-Word­-(http://www.therwordfilm.com/ ). Rob Snow www.standupfordowns.org interviewed me for his Stand Up For Downs Low Down pod cast.  The Office of Science Policy, Analysis, and Communications within the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) featured me in a spotlight story (http://www.nichd.nih.gov/news/resources/spotlight/Pages/103015-DavidEganQA.aspx). I was also interviewed in the NIH  DS-Connect: The Down Syndrome Registry video (https://dsconnect.nih.gov/)

f)       Community Activities: In July, I participated in the 25th Anniversary of the Americans with Disabilities Act (ADA) celebration at the White House. I also was highlighted in the ADA@25 publication as one of 25 successful people with a disability.  I participated inthe National Disability InstituteEconomic Advancement and Financial Inclusion Summit.  I was keynote speaker at Race4Respect in DC with Soeren Palumbo, co-founder of Spread the Word to End the Word.  I gave the keynote speech at Special Religious Education and Development (SPRED) in Newport News. In addition, I made a video for Delegate Keam and Senator Peterson legislators in support of the IDD waiver in Virginia. ((https://www.youtube.com/watch?v=7beox_2Rp3U)

4.      Reflections and Plans for the Future:

First and foremost, I am honored and grateful to the Joseph P. Kennedy Jr. Foundation and all of those who recommended me (Representative Cathy McMorris Rodgers, Dr. Karen Summar, Dr. Ralph Shrader, Dr. Tim Shriver, and Ms. Sara Hart Weir) and CBRE management for giving me a one year leave without pay that afforded me the opportunity to serve at the Ways and Means Committee and at NDSS.  Because of this role, I was able to experience, and better understand, both sides of public policy from formulation to practice on the organizational front lines.  My goal for the future is to continue to advocate for people with intellectual disabilities utilizing the knowledge and skills acquired from my fellowship.   I learned a lot about public policy, legislation and non-profit organizations.  My goal for the upcoming years is to continue and expand my advocacy. 

I am currently back at my previous position as a clerk with CBRE at the Booz Allen Hamilton Distribution Center in McLean, VA.  I am hoping that I can get CBRE, an international company, and others, to engage with me in disability awareness in the US and across the world.

I would like to help in bringing the next generation of self-advocates and legislative staffers to work together.  We need both the legislature and the non-profit organizations to promote the social needs and benefits accrued from including people with intellectual disabilities at all levels in the society. I am going to continue working with the Down Syndrome Congressional Task Force recruiting more supporters and members.

I also want to share my experience with a variety of audiences and inspire others.  I will continue to seek opportunities to make a difference not only in our local communities but also worldwide.   I want to ensure that no person with a disability is forgotten.  We in the US are privileged to follow in the spirit of the Kennedy family, particularly Eunice Kennedy Shriver.  I will strive to keep the spirit going wherever and whenever opportunities present themselves to influence decision makers to include and support people with disabilities in their decision making. My dream is to make a difference across the globe.  “Once a fellow, always a fellow”, and perhaps even an international fellow.   

 

A New Challenge and Opportunity on Capitol Hill

My dream has always been to do something special for those of us with intellectual disabilities. As President Kennedy said, “Do not ask what your country can do for you, but what you can do for your country.” I see my new role as a JP Kennedy Fellow as part of what I can do. 

New Position

In February, I started a new job on Capitol Hill.  I am the first ever Fellow with an intellectual disability selected by the JP Kennedy Foundation Board of Trustees. I’m now working on the Hill with the Ways and Means Committee staff. 

My first day on the job got delayed with a snowstorm, and for the past two weeks, it has been a tough commute with delays and cold weather. In contrast, the welcoming attitude of the staff has been warm and inclusive.

I’ve already attended a hearing on Social Security and its impact on people with disabilities. My job is to learn as much as I can about policy and legislation in Congress and support the Committee to the best of my abilities.

Early Beginnings

At age 37, I am well-prepared for this job. Early in my life, 35 years ago, I was also the first child to be mainstreamed at the Waisman Early Childhood Program (WECP), the first preschool center at the University of Wisconsin in Madison. The program is a model for meeting the needs of a developmentally diverse group of young children.

Up to one-third of the enrolled children have a special education need because of a developmental delay or disability. When I attended the program, I was one of two kids with disabilities -- one with Autism and me with Down syndrome.

We had the best teachers and researchers. The center is affiliated with the researchers and clinicians who work on topics related to human development, developmental disabilities, and finding educational approaches to give children a jump-start in life. They were certainly successful with me, getting me started on the right foot with social and communication skills. We need more programs like the WECP across the country. 

My fellowship would have not been possible without the help of many who took me seriously early on in my life:  my family, siblings, friends, teachers, and mentors. They all believed in me and taught me to be self-sufficient and independent.

Special Olympics

My interest in human rights, justice, and equality became even stronger when I joined Special Olympics. I believe in the opportunity for each person to reach his full potential.

Eunice Shriver, the sister of Joseph P. Kennedy, founded the Special Olympics Movement because she believed in us, those with intellectual and developmental disabilities. In one of her speeches at the World Games in Indiana she said, “The right to play, you have earned it. The right to have a job, you have earned it. The right to live in any neighborhood, you have earned it….” She transformed the way the world perceives people with intellectual disabilities. Her son Timothy Shriver followed in her footsteps and is leading a global movement to change hearts and open minds of people all over the world.

I am proud and excited about being selected as a Shriver International Global Messenger spreading the message of hope and determination that athletes showcase in local, national, and international sports. This summer is another opportunity for global competition at the Special Olympics World Games in Los Angeles. Join us in Unified Games and celebrate the capabilities of those among us with intellectual and developmental disabilities. We showcase courage and sportsmanship with our oath:  “Let me win. But if I cannot win, let me be brave in the attempt.” People with intellectual disabilities do not want pity; we want respect, inclusion, and the opportunity to reach our full potential like any other human. 

Looking to the Future

This year, I am dedicated to supporting the Ways and Means Committee with the attitude and resolve that Eunice Shriver had. I want to cut through partisanship and aim to find ways for people like me to be contributing members of our society. I hope to open doors for others to follow.

Special Olympics Athletic Leadership Program

Dave Lenox, VP of Athlete Leadership Programs (ALP) at Special Olympics Inc (SOI), asked me last year at the SOI international Regional Director’s meeting to suggest measurable interventions to reinvigorate ALP.

What is ALP?

If you search the SOI website for ALP, it states that the goal is to “allow athletes to explore opportunities for greater participation in our movement beyond sports training and competition: as coaches, officials, team captains, spokespeople, and Board and committee members.  These roles give athletes a voice in shaping the Special Olympics Movement, and a chance to spread the word about the transformations Special Olympics can bring to individuals and families. The Athlete Leadership Programs also provide a way for athletes to showcase talents and interests that may have gone unnoticed.

My ALP Experience

I am one of the lucky ones who experienced the ALP rewards. I started my advocacy path by being a spokesperson spreading the message of respect, acceptance, and inclusion internationally.  I had the opportunity to participate in two Global Athlete Congress events (Netherlands in 2000; Morocco in 2010).  I also volunteered twice at the World Games (Raleigh, North Carolina in 1999; Athens, Greece in 2011). I even spoke at the United Nations. These opportunities allowed me to experience the thrill of a global movement where athletes can contribute and shine. 

Special Olympics also provided me with leadership opportunities in Washington DC. They asked me to testify about my employment at a Senate Health Education Labor Pension (HELP) Committee Hearing chaired by Senator Harkin.  I was also invited to the White House to attend the signing of the Rosa Law and the ADA celebration.  I used the occasion to challenge the panel and ask if intellectual disability issues were included in the president’s agenda.

As an athlete, I was able to use the power of sports (swimming, basketball, soccer, and softball) to set goals, reach them, and feel the joy of victory.  I also had opportunities to mentor younger athletes to help prepare the next generation. 

Moving ALP Forward

During our meeting, on October 23rd in 2013 with the regional directors who came from around the world, we came to a consensus that athletes can and should take on leadership roles. We have a place around the decision-making table, and we believe that we can help shape the SOI trajectory.  We need to reinvigorate ALP. 

Problem Definition

One of the problems that we face is that society does not generally respect or value people with intellectual disabilities.  We do not matter in their eyes; they do not see us as having meaningful contributions.  At the same time, while our parents, siblings, teachers, coaches, mentors, health professionals, and others in our society support us, they do not share our life experiences. In fact, only we, the athletes and self-advocates, have an INSIDE understanding of what it means to have a disability. 

Next Steps

We, the athletes, have a voice; we can make contributions, and we have special gifts. We want to be equals in involvement and commitment. We are one of you and not one among you and as we have stated in the “Nothing about us without us” where we tell our stories.  We want to make the lives of people with intellectual disabilities more meaningful and give each person the opportunity to share their voice and to be a fully accepted citizen.  Let’s make inclusion, dignity, and respect the norm rather than the exception.  

If we are included in the planning, discussion, and actions, we will be able to create the changes that we want to see in the world.  While most athletes may not be the best choice to plan budgets, resources, programs and staffing, we are essential in successful networking, outreach, interventions and outcomes.

Our supporters are surprised at first when we serve on a Board, but overtime, they begin to believe in us and value the contributions that we make. We do not want to be tokens, but rather active participants.  We may need some mentoring and guidance, but we can engage and take the various organizations even further.

We do not want to limit the ALP to Global Messenger training and speaking roles.  We want more ACTION in other ways. Instead of measuring the number of people in attendance at training sessions, let’s measure impact. Let’s create stories that change the way people think of us. Let’s tell stories about athletic events that were led by self-advocates, impact on new legislation and individuals successful in competitive jobs.  Let’s help athletes volunteer, coach, and act as leaders. 

Some suggestions were to build Input Councils for athletes to express their views and voice their needs.  Unified Sports is a good model for Unified ALPS.  As athletes, we can help build partnerships and alliances in our communities by extending the reach of Special Olympics to other organizations.  I would like to suggest that we extend Unified Sports to the ALP. It bridges the divide between the outside world and the athletes.  It enriches both the individual with and without disabilities.

We could also start unified leadership projects specific to each region. I am involved in Unified Sports, as well as unified advocacy. I speak at schools with my brother to present a unified perspective on how Special Olympics has changed our lives. I have benefited from that unified experience with my siblings. 

Call to Action

We need to think of actions that will take the ALP further. I ask each one of you to dream with me about the possibilities. What outcomes do we expect from the ALP? What interventions can help us get there? There is more that can be done in all regions of the world. What should we be doing to reinvigorate and strengthen those programs?

I look forward to reading your comments below and continuing the conversation here.