http://dev.dadsnational.org/blog Catch up on what D.A.D.S. members have to say... en joemeares@dadsnational.org Copyright 2012 2012-05-03T00:31:00-05:00 http://www.dadsnational.org/blog/ndss_dads_national_able_webinar/ http://www.dadsnational.org/blog/ndss_dads_national_able_webinar/#When:00:31:00Z It’s time to register for the NDSS- D.A.D.S. National ABLE webinar. This is just for fathers! (Grandfathers, uncles, stepfathers, etc. are welcome, too.) WE have a REAL shot of getting this passed in 2012. But---This HAS to be a real ACTION project for all D.A.D.S. groups and members. Tuesday, May 22nd, 7 pm EST. Pretty simple---hit the link and register, https://www2.gotomeeting.com/register/300075618 ---OR---Be prepared to explain to your child why you didn't! If you are not prepared to be involved in getting ABLE passed---you must agree that a $2,000 cap on assets without risk of losing a safety net is fair. Of course you don't believe this---but---you may believe you can't make a difference. You might think you are not qualified to act, call, write or advocate. 2 words: That's CRAP! Certain responsibilities fall on OUR shoulders as fathers. This IS a pretty darn important responsibility. Find out WHAT ABLE is, HOW it can benefit your child, (regardless of age) and WHY this is crucial for the future. And---because we are guys---Here is the link---again! https://www2.gotomeeting.com/register/300075618 2012-05-03T00:31:00-05:00 http://www.dadsnational.org/blog/why_dads_cares_about_policy/ http://www.dadsnational.org/blog/why_dads_cares_about_policy/#When:00:53:00Z "Governments are instituted among Men, deriving their just Powers from the Consent of the Governed." — Thomas Jefferson, the Declaration of Independence Since the Second Continental Congress declared America's independence from Great Britain on July 4, 1776, the United States government has sought to realize the fundamental principle on which our nation was founded: that all people have the right to life, liberty, and the pursuit of happiness. This principle was formalized in 1788 with the ratification of the Constitution. That document — still the supreme law of the United States — became the foundation of a federal government that allowed the several states to act together as one, while protecting the sovereignty of each individual state. In creating this balance, the framers of the Constitution hoped to form what they called "a more perfect union" — a government that would serve all people. ALL people includes individuals with Down syndrome. D.A.D.S. believes advocacy IS a responsibility which naturally falls on the shoulders of fathers. Understanding “the system” is the first step in making a difference and protecting and advancing the civil and legal rights of our children. D.A.D.S. National Policy Initiative I believe this is an accurate statement: “Guys won’t get involved with anything they don’t understand”. As a community, we’ve asked for you to call/write/email/visit your elected representatives and a “script” has been provided. This hasn’t worked to any large degree. I believe this is because we don’t know, or remember, the basics. It’s time to lay a better foundation for a difficult task: advocacy. Our goal is for each D.A.D.S. groups to have a designated “Policy D.A.D.” to lead the challenge of educating its members. D.A.D.S. National is committed to providing the resources and training to each “Policy D.A.D” so their members can learn together and be prepared when there is a “call to action”. As D.A.D.S., WE are responsible and working together, we can have an impact on Public Policy and societal attitudes to change and better the systems in which individuals with Down syndrome and families navigate. We believe this begins with monthly conversations; 10-15 minutes at each meeting, discussing and learning (and re-learning) the basic principles of our legislative system. D.A.D.S. National will provide the policy discussion topics. Public policy priorities are influenced by advocacy. WE are our children’s advocates. To reach our goal, D.A.D.S. National has a National Policy Advisor and we partner with the National Down Syndrome Society (NDSS) Policy Center in Washington DC. The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. To this end, the NDSS National Policy Center strives to protect the rights and remove the barriers of all individuals with Down syndrome. The Policy Center: - Works with Congress and federal agencies to develop and improve laws, regulations and other policies - Trains and educates parents, self-advocates and others to advocate on the local, state and national levels - Organizes and participates in coalitions of national disability organizations - Leads national and statewide Governmental Affairs Committees The legislative and policy priorities of the NDSS National Policy Center span the life experience of individuals with Down syndrome from birth through adulthood and range in issue from healthcare to asset development. These priorities are: - Improving Health Outcomes and Quality of Life for People with Down syndrome - Improving Education Opportunities for People with Down syndrome - Increasing Opportunities for Adults with Down syndrome - Creating an Economic Future for Individuals with Down syndrome Our challenge to each D.A.D.S. group: Designate a “Policy D.A.D.” All this individual needs is a willingness to learn and share what he learns. D.A.D.S National is committed to providing all the needed tools and resources. Imagine the aggregate increase in knowledge (and comfort level) when Policy becomes a part of the culture of each D.A.D.S. group. It is OUR responsibility! To find out more about the D.A.D.S. National Policy Initiative, contact our National Policy Advisor, Darin Yoder, or 315 372 9611 In your service, Joe Meares Chair, D.A.D.S. National 317 523 5888 2012-02-16T00:53:00-05:00 http://www.dadsnational.org/blog/a_little_headway_we_hope_so/ http://www.dadsnational.org/blog/a_little_headway_we_hope_so/#When:00:40:00Z In the July issue of GQ, the magazine named Boston as the Worst-Dressed city in the US. But, they couldn't just leave it at that. Instead, they thought it was necessary to describe the city's style like this: "Boston suffers from a kind of Style Down Syndrome, where a little extra ends up ruining everything." Once again, our kids get placed as a objects of ridicule in the media. Once again, no one producing this article thought enough about those it hurts to stop it from being printed. Luckily, Dads out there are watching out for our kids. Brad from California, the father of a child with Down syndrome, wrote to GQ and pointed out how hurtful this statement is. He stressed that after all our kids have to go through (surgeries, therapies) - they don't need mean-spirited setbacks from others. GQ actually answered with an apology and edited the reference to Down syndrome out of the online version of the article. We can hope that the apology was sincere and that Brad (and I'm sure there were others as well) made some headway towards understanding in the GQ office. However, his subsequent reply back reminding the editors that much damage has been done in the printed copies of the magazine and suggesting that GQ goes the extra mile and issue a printed apology with a PSA has so far gone unanswered. Let's all take this as a reminder that these kinds of statements still happen too often - and we have to be ones to bring about change. 2011-08-03T00:40:00-05:00 http://www.dadsnational.org/blog/happy_fathers_day/ http://www.dadsnational.org/blog/happy_fathers_day/#When:12:18:00Z Just in time for Father's Day, the first issue of the D.A.D.S. National Digest has been published. Click here to read and sign up for future issues. 2011-06-19T12:18:00-05:00 http://www.dadsnational.org/blog/check_out_down_syndrome_footprint/ http://www.dadsnational.org/blog/check_out_down_syndrome_footprint/#When:21:03:00Z Down Syndrome Footprint is an organization that is committed to creating greater awareness, empowerment, and employment opportunities for all individuals with Down syndrome. They also sell items that are either made or packaged by a person with Down syndrome. The D.A.D.S. "Shop" page will now have a link to the Down Syndrome Footprint store. If you jump there from the D.A.D.S. web page and buy something, a portion of the proceeds will go to D.A.D.S.! For more information on Down Syndrome Footprint, please see: http://www.downsyndromefootprint.org/home 2011-04-22T21:03:00-05:00 http://www.dadsnational.org/blog/dads_national_news/ http://www.dadsnational.org/blog/dads_national_news/#When:01:19:00Z New Gear Check out the new gear added to the D.A.D.S. National store, http://www.dadsnational.org/shop/. There is NEW tab for SPECIAL REQUESTS. Specific brands have been asked for and have been added AND we’ve added “moms-D.A.D.S. gear”. Also, many items are now available in dads AND kids sizes. New hats, new camp shirts for summer, D.A.D.S. coolers in both 6 pack and 12 pack sizes, D.A.D.S. “Man bags” and more golf shirt and dress shirt selections have been added. If there are specific items or brands you‘d like to see in the store, let me know. Also, PLEASE share your thoughts after you look at the new items. NEW D.A.D.S. GROUPS past 90 days. DSAW D.A.D.S. (Milwaukee and Fox Cities, WI) DSANV D.A.D.S. (Northern Virginia/DC) TDSN D.A.D.S. (Raleigh/Durham/Chapel Hill, NC) D.A.D.S. Syracuse, NY DSAH D.A.D.S. (Houston, TX MDS D.A.D.S. (Michiana IN/MI) NADS D.A.D.S. (Chicagoland, IL) FCDSN D.A.D.S. (Rochester, NY) And----those starting in the very near future: DSAWM D.A.D.S. (Grand Rapids, MI) March DSACO D.A.D.S. (Oklahoma City, OK) March DSAJ D.A.D.S. (Jacksonville. FL) TBA DSAM D.A.D.S (Minnesota) April DSAGNO D.A.D.S. (New Orleans, LA) TBA---But, pretty much when Caption Kirby Lacour tells me the Redfish are running! Also---a SHOUT OUT to: DSAC D.A.D.S. (Charlotte, NC) and DSAGR D.A.D.S. (Richmond, VA) Both have a new strategic plan and vision for their D.A.D.S. group and are poised to kick butt! ON THE ROAD AGAIN……….. D.A.D.S. or fatherhood workshops presented by D.A.D.S. National are scheduled at the following conferences: DSAIA Ds Leadership conference, Dallas, TX, February Oklahoma Ds state conference, Oklahoma City, OK, March Tennessee Ds state conference, Nashville, TN, May Florida Ds state conference, Orlando, FL, July NDSC National Convention, San Antonio, TX, August (We’re submitting and RFP to facilitate TWO workshops, a D.A.D.S 101 and 201 for existing D.A.DS. groups.) BUILDING THE CONNECTION With each of the D.A.D.S. groups listed above, you’ll see the reference to the local Ds family support group of which they are a part. D.A.D.S. National encourages ALL D.A.D.S. groups to build the connection directly to your family group with your list serves, Facebook pages, recruitment efforts and all communication.This is crucial in sending the right message to new or perspective members that D.A.D.S. IS NOT separate from the family group. Ex: The D.A.D.S. group in Orlando, FL is DSACF D.A.D.S. IF this group were simply called D.A.D.S.-Orlando, some confusion is created and the question comes up: IS this group supported by DSACF, the local family group. This confusion is not just with perspective new fathers or perspective new sponsors and donors, but----within the family support group. Building this constant connection with the supporting group—IS PARAMOUNT. About ½ of the Down syndrome support groups with a D.A.D.S. program have signed and returned the new D.A.D.S. Terms of Usage agreement which protects the D.A.D.S. “brand”, the integrity of the D.A.D.S. program and protects the local family support group and their D.A.D.S. group. This is a work in progress; so, please contact me if your group hasn’t yet received the agreement. LIST SERVE REVISION Since D.A.D.S. began, this list serve has had two functions; the DSI D.A.D.S. local Indianapolis communication vehicle AND the D.A.D.S. National online conduit. Because men aren’t so smart----I’ve been told this is confusing. Over the next 60 days, there will be a separation and the goal is to revitalize the D.A.D.S. National list serve with chapter updates and more---relevant dialogue. (and----fun, entertaining stories!) CHAPTER MAP UPDATES We want to make sure our website chapter map is updated with current information. PLEASE check the list of chapters, http://www.dadsnational.org/chapters/ and send any updates and revisions to: johngoodrich@dadsnational.org Please use this format: Local DSA__________________________________ Website____________________________________ Phone_____________________________________ Email_____________________________________ Area Served________________________________ D.A.D.S. leader______________________________ Email______________________________________ Phone______________________________________ Facebook or list serve info_____________________ BUDDY WALK ON WASHINGTON—D.A.D.S. Policy Leader In November, over 200 fathers registered for the largest attended electronic training session ever in the Ds movement; the NDSS D.A.D.S. Policy 101 webinar. Last week in Washington, many Buddy Walk on Washington attendees were D.A.D.S. members who were a part of the webinar. IT’S WORKING! D.A.D.S. National encourages EVERY D.A.D.S. chapter to have a designated Policy Leader and we will help with the strategies to implement this position. Contact Jeff Huffman, jeffhuffman@dadsnational.org for help! The ABLE bill will be reintroduced within a few weeks and it is crucial that we get as many members of the House and Senate to co sponsor. Look for more information and a call to ACTION soon. ________________________________________________________________________ “The attitude of the father becomes the attitude of the family”! I BELIEVE THIS and have witnessed the benefits to families and individuals with Down syndrome once the father is involved and gets “ownership” through Dads Appreciating Down Syndrome. “To assist and Support, through Fellowship and Action, the fathers and families of individuals with Down syndrome” D.A.D.S. works when the mission is met by accomplishing the goals through Support, Fellowship and Action. MANY new support documents to help D.A.D.S. chapters have been developed over the past 6 months. Please contact me to make sure you have EVERY resource. Best regards, D.A.D.S National joemeares@dadsnational.org 2011-02-21T01:19:00-05:00 http://www.dadsnational.org/blog/dads_and_policy/ http://www.dadsnational.org/blog/dads_and_policy/#When:00:54:00Z “The attitude of the father becomes the attitude of the family” I’m fortunate to have the opportunity to speak with many D.A.D.S groups and in fatherhood workshops. I always begin with the words above. It’s time for D.A.D.S. groups and fathers of individuals with Down syndrome to better develop an attitude towards advocacy and to better understand Policy and how we can make a difference. Our attitude will become contagious in our family and our local Ds community. What is Public Policy and Advocacy? Public policy can be generally defined as the course of action (or inaction) taken by the government with regard to a particular issue. Shaping public policy is a multifaceted process that involves the interplay of numerous individuals and interest groups collaborating to influence legislators to vote in a particular way. These individuals and groups use a variety of tactics and tools to advance their aims, including advocating their positions publicly, attempting to educate supporters and opponents, and mobilizing allies on a particular issue. As it relates to Public Policy, Advocacy can be defined as attempting to influence through education, lobbying, or political pressure. Advocacy groups often attempt to educate the general public as well as legislators about the nature of problems, what legislation is needed to address problems, and the funding required. Public policy priorities are influenced by advocacy. YOU are your child’s advocate! In the Down syndrome community, these initiatives are led by the National Down Syndrome Society Policy Center in Washington DC. The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome. To this end, the NDSS National Policy Center strives to protect the rights and remove the barriers of all individuals with Down syndrome. The policy center: • Works with Congress and federal agencies to develop and improve laws, regulations and other policies • Trains and educates parents, self-advocates and others to advocate on the local, state and national levels • Organizes and participates in coalitions of national disability organizations • Leads national and statewide Governmental Affairs Committees The legislative and policy priorities of the NDSS National Policy Center span the life experience of individuals with Down syndrome from birth through adulthood and range in issue from healthcare to asset development. These priorities are: • Raise expectations and improve outcomes for people Down syndrome in the prenatal period through age five • Provide a first-class education for children with Down syndrome • Create an economic future for adults with Down syndrome • Develop treatments and therapies to improve the quality of life of people with Down syndrome BUT---the Policy Center does not vote, YOU DO. The Policy Center does not have an elected representative; YOU DO. The Policy Center helps our elected representatives in Washington understand initiatives that affect our community, BUT---it takes our collective voices to generate movement. The Policy Center is not known in your state capital. BUT---you can be and your D.A.D.S. group should be. D.A.D.S. National is making Policy a priority. Functionally, it’s a natural fit and it should be a key ACTION piece for every D.A.D.S. group and the Policy Center a recipient of each D.A.D.S. groups fund raising efforts. Our first step is the NDSS/D.A.D.S. Policy 101 for MEN Webinar, Tuesday, November 23rd, Noon, EST. To register, use this link: https://www2.gotomeeting.com/register/585560338 This is not just for members of a D.A.D.S. group, but, for ALL fathers. Please take 90 minutes to become a better advocate for your child. You’ll learn the basics and find out how you can make a difference and about legislation that will benefit your child and our community. Your child deserves a strong advocate. That advocate should be you! I’ll be looking for you on November 23rd Joe Meares Dads Appreciating Down Syndrome joemeares@dadsnational.org 2010-10-13T00:54:00-05:00 http://www.dadsnational.org/blog/webinar_2010_11_23/ http://www.dadsnational.org/blog/webinar_2010_11_23/#When:20:45:01Z This month, we are proud to host a special ‘fathers only’ session with guest speakers from Dads Appreciating Down Syndrome (D.A.D.S.), Joe Meares, Steve Beck and Tom Milvert. The mission of D.A.D.S. is to assist and support, through fellowship and action, the father and families of individuals with Down syndrome. Whether you are involved in a local chapter of Dads Appreciating Down Syndrome or not, fathers especially should look for opportunities to advocate and take action for our children. Therefore, it is important to understand the basics of advocacy and public policy, and it’s not as difficult as you think! This webinar will define advocacy and policy in simple terms. You will learn how policy affects your child, why your voice must be heard and how you can take action. “It is time fathers in general and D.A.D.S. in particular takes an active role in policy. Dads Appreciating Down Syndrome works because it embraces support, fellowship and action. There is not a more important action component than protecting and advancing the rights of our children. It’s time fathers get off the bench and get in the game! It’s what our community needs and what our children deserve!”-Joe Meares, Founding Member, D.A.D.S. To register and reserve your seat in the webinar, go to: https://www2.gotomeeting.com/register/585560338 Slides from the presentation will be posted to http://www.ndss.org. During the webinar there will be time for Q and A and open discussion. Please feel free to submit questions to NDSS in advance. To submit a question, or suggest a topic for a future webinar, please email NDSS at bfinkelstein@ndss.org. Please share this information; the webinar is open to all fathers. Joe Meares is a Founding member of D.A.D.S. and President of DSAIA. Joe is from Indianapolis, Indiana and is married, with 4 daughters. His 12 year old daughter has Down syndrome. Stephen Beck Serves on the Board of Directors of the Down Syndrome Association of Northern Virginia where he is currently is co-chair of the Advocacy and Awareness Committee. He also serves on the NDSS Board of Directors and the Steering Committee for the formation of the AIA Trade Association. He and his wife Catherine have two daughters, Mariae Rose and Natalie Elaine. Tom Milvert is a proud dad of a 10 year daughter with Down syndrome. When he is not at work he enjoys community volunteer activities and is very active in the local Down syndrome group in Columbus, Indiana. He especially enjoys working on public policy issues related to education and employment for individuals with Down syndrome. Tom also serves on the board of Down Syndrome Indiana and is the chair of the Indiana statewide governmental affairs committee. 2010-10-10T20:45:01-05:00 http://www.dadsnational.org/blog/story_time/ http://www.dadsnational.org/blog/story_time/#When:00:27:00Z I used to post stories with a lot more frequency---but, as we all know----life gets in the way. This story starts 5 days ago, sending my oldest child off to college for her freshman year. She is not the most independent of my children and the transition has a few---uh---issues. Not with separation anxiety as much as helplessness. I get calls each day which begin “how do I……..” followed by something (in my mind) equal to “tie my shoes”. I HOPE these are just excuses to talk, but---I do need her to understand IF I don’t answer IMMEDIATELY---it may mean I’m engaged with---work---and calling 4 times in a row isn’t a productive strategy. The second component of the story is yesterday. One of those days you just want to say---“I’M TAKING A MULLIGAN”! First, there was the 2 hours I spent playing “Veronica Mars, Teenage Girl Detective” in the case of the missing 6th grade kid’s backpack. I retraced every step---home, the dry cleaner, the convenience store and school---with no luck. (It was eventually found at school) Two hours behind from that point, things didn’t get better. Nothing specific, but---just one of those days you spend dodging flying monkey wrenches. Just before 6pm, I barely get to after school daycare on time to pick up Peyton. Ms. Jennifer, the director, asks to speak with me privately. This is never good news and as much as I’m always looking for inclusion and acceptance for my child---these are usually good opportunities to play the Ds card! It seems Peyton was telling a group of kids all about--------------sex! My first thought is—why didn’t this happen when her mother picks her up. My idiotic question was: “Was she talking about Cooper?” (Her “boyfriend) Ms Jennifer looks at me as if I’d lost my mind and I quickly saw the ridiculousness of my question. I covered with, “Well---I just want to know she is monogamous in her imagination”! Luckily---it was after 6 and Ms Jennifer was more interested in leaving work than discussing my parenting weaknesses. Peyton and I left and 1 block away from school is our church. I pulled in the lot, told her to get out and I’d pick her up when she’s 18. OK---that was just a fantasy. We talked—with my STERN warning that, “Your mother will……………………….” I decided to take out my frustrations on the yard……and a wheel fell off my lawnmower. I gave up that project for the day. Checked my phone—and returned the call(S) from the college student and worked through her problem(S) from the past 3 hours. Eventually---I ended up on my couch, chores complete---or failed—and was ready to relax, pray and look for Biblical instruction. My laptop made a sound indicating an incoming Skype video call. My first thought was it was my college freshman with an “emergency”. It WAS a college freshman—just not my freshman. Wils, 19, attends the University of Northern Florida. He Skyped to say hello and to tell me how much he LOVES school, about his classes, his roommates, his new skills with laundry, his parties and to say he missed me. While I was talking with Wils, I got my wife’s attention so she could hear/see this conversation. When Wils and I said good-bye---I told Cheri, “THIS is a typical kid’s college experience. YOUR child needs help”! (IF you need help connecting the irony dots---the kid I referred to as typical---has Down syndrome; the kid that “needs help”---does not!) I had the opportunity to attend Wils final IEP meeting in May and was present in July when Wils got the news he was accepted at UNF. It was a moving experience to Skype with Wils and to continue to share in his excitement and achievements. Yesterday was truly a GREAT day! 2010-09-10T00:27:00-05:00 http://www.dadsnational.org/blog/2010_golf_outing_update/ http://www.dadsnational.org/blog/2010_golf_outing_update/#When:01:29:00Z The 2010 DADS Golf outing now has over 310 golfers and cannot accept any more applications, but we still would be appreciative of any sponsors! For more information,please see: http://www.dadsnational.org/golf 2010-06-02T01:29:00-05:00