National Down Syndrome Society

Transcription

1 National Down Syndrome Society Nobody can do it alone. Having consumers, parents and other advocates working together with a key legislator or two is the only way to pass a bill. Legislators help with the process, and the stakeholders provide the passion. The Honorable State Representative Judy Ann Buffmire from Salt Lake City Utah State Legislature since 1992

2 About NDSS NDSS has worked since 1979 to promote the value, acceptance and inclusion of people with Down syndrome. NDSS envisions a world in which all people with Down syndrome have the opportunity to enhance their quality of life, realize their life aspirations, and become valued members of welcoming communities. NDSS focuses on four areas of programming to further our mission: Advocacy Community Support National Buddy Walk Public Awareness

3 What Does NDSS Do in DC?

4 Works with Congress and federal agencies to develop and improve laws, regulations and other policies Trains and educates parents, selfadvocates and others to advocate on the local, state and national levels Organizes and participates in coalitions of national disability organizations Leads national DS advocacy program 4

5 NDSS Legislative Agenda The legislative and policy priorities span the life experience of individuals with Down syndrome from birth through adulthood and range in issue from healthcare to asset development These priorities have been shaped by self-advocates, families, affiliate leaders and others under the direction of the NDSS Board of Directors and the National Governmental Affairs Committee (NGAC) Creating and Economic Future for Individuals with Ds Improving Health Outcomes and Quality of Life for People with Ds Increasing Opportunities for Adults with Ds Improving Education Opportunities for People with Ds 5

6 Advocacy is telling your story Lobbying both locally and nationally is very important because the legislators are the policy makers and they have the power to put our ideas into laws. When they meet with all of us, especially if we come from their home district, they are able to interact with us personally and remember what our issues and concerns are. We were received with enthusiasm and respect as we presented our concerns to them. I felt they were grateful to be more educated on our priority bills. -John Anton, Haverhill MA 6

7 and linking it to an issue or cause (i.e., awareness, education, legislation, etc.) 7

8 NDSS Advocacy Program DS Government Affairs Committees NDSS DS-Ambassadors (50 states) 8

9 NDSS Federal & State Advocacy NDSS DS-Ambassador Program NDSS GAC Program

10 NDSS DS-Ambassador Program Serve as volunteers committed to taking part in the democratic process and serve as liaisons between the NDSS, your state, and affiliate Focus on deepening relationships with Congressional delegations (federal elected officials) Serve as an ambassador of NDSS by providing us with input, feedback, and NDSS programs, initiatives, and our legislative agenda Work with the NDSS on special assignments to advance our mutually exclusive advocacy interests before elected officials 10

11 Overall NDSS DS-Ambassador Program Goals & Objectives Strengthen and organize the Down syndrome community grassroots network across the US Be more effective on Capitol Hill by building relationships in Washington, DC with Members of Congress and staff (voters count!) Engage more affiliates and advocates to provide valued input and feedback to NDSS on our advocacy efforts, programs, and key initiatives Encourage more advocates and self-advocates to become advocates for the Down syndrome community Grow the DS-Ambassador to 535 by 2014 (one for every single Member of Congress) think about what we can do as the Down syndrome community! 11

12 DS-Ambassadors are asked to commit 1-2 hours per month to the program NDSS DS-Ambassador Time Commitment DS-Ambassadors will meet by conference call/webinar every other month All conference calls and webinars will be recorded DS-Ambassador Assignments will be given during the conference calls/webinars for the off month and wont take longer than 1-2 hours While it s not an obligation, DS-Ambassadors are also encouraged to attend the annual Buddy Walk on Washington in Washington, DC where you have the opportunity to meet your legislators and advocate with NDSS From time to time, NDSS will ask our DS-Ambassadors to weigh in on NDSS programmatic and initiatives to garner feedback from across the country 12

13 Buddy Walk on Washington An annual two-day advocacy experience that brings the Ds community together to advocate for public policies that impact the lives of people with Down syndrome and their families Advocates come face to face with Members of Congress and their staff on Capitol Hill to advance education, research and healthcare for people with Down syndrome Attendees will participate in at lest two webinars and an interactive advocacy training, attend a celebration and advocacy awards dinner and spend a day on Capitol Hill The experience is perfectly suited for self-advocates, family members, professionals, affiliate leaders and members and anyone else who wants to make a difference for people with Down syndrome 13

14 NDSS GAC Program What Ds-GACs do? Focus on developments and setting priorities in state legislatures Work in collaboration with the NDSS Policy Center to promote and pass state legislation and to influence the design of regulation and other policy DS Model Legislation Work with state disability organizations and coalitions on key issues and priorities Participate in conference calls every other month led by Policy Center with all GAC- Co-Chairs to discuss pressing federal and state policy issues and priorities, opportunity to discuss best practices GAC State Network DS Coalition of California (DSCCA) COLORADO (CO GAC) Florida Coalition for the Education of Individuals with Developmental Disabilities (FL CEIDD) Indiana DS Center for Public Policy LaGADS Maryland Down syndrome Advocacy Coalition MA Down Syndrome Congress Legislative Action Committee MISSOURI (MO GAC) NEBRASKA (NE GAC) OKLAHOMA (OK GAC) NEW JERSEY (NJ GAC) Ohio DS Advocacy Network (ODAN) DS Policy Network of Tennessee (DSPNT) Texas Down Syndrome Advocacy Coalition (TDSAC) Virginia Down Syndrome Alliance (VDSA) 14

15 NDSS Legislative Agenda For Persons with Down Syndrome Across the Lifespan The legislative and policy priorities span the life experience of individuals with Down syndrome from birth through adulthood and range in issue from healthcare to asset development These priorities have been shaped by self-advocates, families, affiliate leaders and others under the direction of the NDSS Board of Directors and the National Governmental Affairs Committee (NGAC) Creating and Economic Future for Individuals with Ds Improving Health Outcomes and Quality of Life for People with Ds Increasing Opportunities for Adults with Ds Improving Education Opportunities for People with Ds 15

16 What are we working on now? Economic Future Advocating for the passage of the ABLE Act Adult Opportunities Advocating for the TEAM Act Research/Healthcare Advocating for increased research funding for Down syndrome at the NIH and other federal agencies Educational campaign on prenatal testing for Down syndrome Advocating for the passage of the 21 Act package Education Influencing the ESEA Reauthorization process Preparing for the IDEA reauthorization process Advocating for appropriations for postsecondary programs Promoting federal and state restraints and seclusion legislation 16

17 ABLE Act ABLE: a New Tool for Individuals and Families Similar to Section 529 education savings plans for their college-bound children That is easier to establish and less costly than typical special needs trusts That will allow their adult children with disabilities to manage their own (or some of their own) funds Individuals with disabilities have been seeking a way to save that allows self-management of funds Traditional special needs trusts have not worked for all The ABLE Act is intended to offer another tool for individuals and families to consider in their planning

18 ABLE Act Congressional Background The bill has overwhelming bipartisan, bicameral support Bill is led by a bipartisan, bicameral set of Congressional champions, including: Senator Robert Casey, Jr., (D-PA) and Senator Richard Burr (R-NC) Congressman Ander Crenshaw (R- FL), Congressman Chris Van Hollen (D-MD), and Congresswoman Cathy McMorris Rodgers (R-WA) The bill has been scored 18

19 Setting the Stage Have you seen this? A Bill Becomes a Law Do you know that you have 2 Senators and 1 Representative in Congress? Do you know NDSS advocates for you in our nation s Capitol and the Buddy Walk program supports it? New Era of Social Media 19

20 What is advocacy? Advocates Build relationships with others Plead the cause on behalf of others / are persuasive Give information to legislators, elected officials, and decision-makers in the hope that leaders will be influenced to support those viewpoints Identify problems that need to be addressed, contact legislators, and encourage them to guide the bill through the legislative process

21 Step 1: Know how decisions are made/ bills become law A bill is simply an idea that someone or a group of people would like to see become a law

22 Do your homework online by reviewing their website: Step 2: Get acquainted with your Elected Officials Political Life Who is this person as a representative? Geographic and demographic area they represent? Term in office? Platform? Major issues and concerns? Voting record? Committee assignments? Staff members? Personal Life Who is this person? Spouse? Children? Relate this information to our issues Do your homework in person by meeting your representative to introduce yourself and build relationships Building relationships! Invite reps to DS events Engage self-advocates

23 Step 3: Know & Study the Issue(s) Study NDSS website, legislative websites, etc. What has been tried before? What are both sides of the issue? Talk to others Who is affected by the issue or the solution? Where do your advocates stand? Develop your pitch or elevator speech Connect it to the representative s life Connect it to your personal story

24 Step 4: Decide your method for advocacy , fax, or letter Telephone call Social media In-person meeting

25 Send hand written notes Communicate in multiple ways Include these parts in your one-page letter Your name, address, and telephone number , Fax, or Letter The issue that concerns you (Why and how it affects you?) Refer to the bill number Action that you want the representative to take Other ideas to remember Keep it short, focused, positive, polite, business-like Avoid educational jargon Proof your letter and write well Don t go overboard with your passion and zeal

26 Phone calls are quick and effective Telephone Calls Your previous nurtured relationship with your representative will pay dividends Include these parts in your phone conversation Ask to speak to the representative or staffer Probably will speak to receptionist or aide, who is tallying constituents votes for and against an issue Your name, address, and telephone number The issue that concerns you (Why and how it affects you?) Refer to the bill number The action that you want the representative to take

27 Most representatives have an active social media presence Social media is an effective way to reach a large group of people Follow similar rules to and phone contact Focus on the issue Include information for follow-up Two-way communication Let others know how they can learn more Present a balanced view Social Media

28 Here s some examples Blog! Tie the message to an advocacy goal/message, then share it! Follow Your Elected Officials and tell them what you want! ABLE Act 28

29 In-Person Meeting Visit with your elected officials at his/her home office home office, town hall meetings, community functions Consider inviting them to attend Buddy Walks, Local events, etc. Schedule an appointment and inform the office about the reason for requesting the meeting Most meetings last 15 to 20 minutes Before the meeting Dress professionally Arrive on time Greet the receptionist Sign the guest book and include a short message about the issue Ask to speak to the representative or the aide in charge of the key issues Identify yourself as a constituent.

30 In-Person Meeting (Cont.) During the meeting Introduce yourself and exchange business cards State the issue that concerns you (Why and how it affects you?) Refer to the bill number Be prepared to educate the representative Speak from personal experience when possible Prepare a one-page letter to guide your discussion State the action that you want the representative to take... Make the Ask Thank the representative or staffer After the meeting Follow up with a phone call, , or letter thanking the representative for meeting with you Offer another personal visit for more information Address additional concerns or provide more information

31 Step 5: Join a Coalition or Group! Reasons to join a group Amplifies your voice Power in # s! Keeps you informed via websites and social media Ways to join a group NDSS Others

32 How Can You Make a Difference! Follow NDSS on Facebook, Twitter, Pinterest Subscribe to our NDSS e-newsletter (click here) Subscribe to our NDSS Advocacy Alerts (click here) Attend the Buddy Walk on Washington Help Us Start a GAC Become an NDSS DS-Ambassador

33 Contact Me! Sara Hart Weir Vice President, Advocacy & Affiliate Relations National Down Syndrome Society 33