Friday, 5:25 p.m. E.S.T.: This will probably be my last post from Washington due to the fact that our Internet service will expire tonight and I saw no need in paying an extra day when we are leaving early tomorrow.
Today was jam packed with workshops, seminars and meetings covering a host of issues. I attended the Leadership Institute which was a 2 hour training session covering a lot of the things we need for NEMDSS. I am excited to have this knowledge now and look forward to sharing it with you all when we return. I also attended the public relations session which I found helpful as well. NDSS is currently instituting a new awareness program for our families. We will have the opportunity to share our personal stories and pictures to be added to their website in a story book type format. From those submissions, NDSS will select some of the stories to use in their "National" advertising. FUN, FUN, FUN!!!
To close out the day, I went to 2 separate sessions/workshops on the Buddy Walk program. There will be some changes regarding the BW and how we register it with NDSS, including a commitment to send a donation to NDSS. This will have no effect on us whatsoever, as we are already doing that. I was appalled to find out; however, that many affiliates don't. Only 95 of the 275 Buddy Walks last year made a financial donation to NDSS. Pretty Sad!!!!! I received a lot of praise on behalf of our group for our commitment to supporting NDSS and for the "Live Feed" that we had last year of the walk. Thanks once again to Michaela and guy Hornbuckle for that!
Michelle went to a meeting on establishing and maintaining a prenatal outreach program. She said it was very informational. Her second session consisted of the "nuts and bolts" of working with hospitals. We can definitely use that. She then came with me to the Buddy Walk sessions.
Tomorrow, we have still more sessions to attend before leaving out. I will post about them as soon as I am able to - may be when we get back to MS. Our flight departs from Reagan National Airport at 4:35 tomorrow afternoon taking us to Detroit, where we will spend the night with Michelle's grandparents. We will finally get back home Sunday night! Yeah, we are missing our kiddos!!!
Thank you to all of our NEMDSS families - especially our board members for all that you do. I can tell you, we have an awesome group. So many people representing a number of larger and older affiliates here are envious of our growth, our commitment and how much we do for the Ds community. I have heard several horror stories while I have been here regarding some of our sister groups. So again, thank you from the bottom of my heart for all you have done and continue to do for NEMDSS, our children and the NE MS Region.
Friday, February 27, 2009
Thursday, February 26, 2009
It is Thursday, 6:30 p.m. EST and we have just returned to the hotel from a very long day of advocating for our cause on Capitol Hill. Seems like we have walked 20 miles; but if we get the support we have asked for, it will all be worth it.
We kicked off the day with a breakfast reception for the Down Syndrome Caucus. Some of our lawmakers stopped by, including Congressman Patrick Kennedy of Rhode Island and Congresswoman Cathy McMorris Rodgers of Washington State. Kennedy and Rogers are both co-chairs of the caucus along with Congressman Pete Sessions of Texas and Congresswoman Eleanor Holmes Norton of Washington D.C. Both Rodgers and Kennedy spoke to us and explained the importance of what we are here to do from a member of Congress' point of view. An interesting side note on three of the 4 co-chairs that will explain why they are so very passionate about Down syndrome. Rodgers has a two year old living with Ds; Sessions has a 6 year old son living with Ds and Norton is the proud mother of a 31 year old living with Down syndrome. As for Kennedy, he has always been an outspoken advocate for people with disabilities and has done some great work to promote positive changes for our families.
As for our personal meetings, we met first with Congressman Gregg Harper of MS. We were asked by the staff from NDSS to go by there to speak with him although he is outside of our region since no one else had scheduled an appointment with him. He has a son with Fragile X and is very supportive of any Bills that would help in any way. Next up was a meeting with Congressman Travis Childers of MS First District. We were extremely impressed by his interest in what we were there for and what we had to say. He mentioned several friends of his who live with Ds and even shared some personal stories about his past experiences with them. He was very knowledgeable of Ds and pledged his support to our cause. This meeting was by far the best meeting we had all day as far as content covered and reception by the congressman.
We then went over to the Senate side and met with staffers from Sen. Thad Cochran's office. They were very receptive of our visit and assured us that they would get with the senator and explain our needs and what we would like for him to do. Cochran is the ranking Republican on Appropriations so he can be a huge help in advancing the two Bills I mentioned in the previous post. To finish our visit to Capitol Hill, we met with the staff in Sen. Roger Wicker's office. They too promised to forward our information on to the senator and assured us that they would be in contact with us in the coming days to let us know the senator's thoughts on the information we dropped off.
Following our last meeting, Michelle and I walked the grounds of the U.S. Capitol and took several pictures. We also got some great shots of the Library of Congress and the US Supreme Court. We are having a great time here and feel like we are making a positive impact on the Ds community, at home and abroad. Tomorrow, we will start our workshops and training seminars before finishing up on Saturday. I will have a post tomorrow on how the workshops go.
We kicked off the day with a breakfast reception for the Down Syndrome Caucus. Some of our lawmakers stopped by, including Congressman Patrick Kennedy of Rhode Island and Congresswoman Cathy McMorris Rodgers of Washington State. Kennedy and Rogers are both co-chairs of the caucus along with Congressman Pete Sessions of Texas and Congresswoman Eleanor Holmes Norton of Washington D.C. Both Rodgers and Kennedy spoke to us and explained the importance of what we are here to do from a member of Congress' point of view. An interesting side note on three of the 4 co-chairs that will explain why they are so very passionate about Down syndrome. Rodgers has a two year old living with Ds; Sessions has a 6 year old son living with Ds and Norton is the proud mother of a 31 year old living with Down syndrome. As for Kennedy, he has always been an outspoken advocate for people with disabilities and has done some great work to promote positive changes for our families.
As for our personal meetings, we met first with Congressman Gregg Harper of MS. We were asked by the staff from NDSS to go by there to speak with him although he is outside of our region since no one else had scheduled an appointment with him. He has a son with Fragile X and is very supportive of any Bills that would help in any way. Next up was a meeting with Congressman Travis Childers of MS First District. We were extremely impressed by his interest in what we were there for and what we had to say. He mentioned several friends of his who live with Ds and even shared some personal stories about his past experiences with them. He was very knowledgeable of Ds and pledged his support to our cause. This meeting was by far the best meeting we had all day as far as content covered and reception by the congressman.
We then went over to the Senate side and met with staffers from Sen. Thad Cochran's office. They were very receptive of our visit and assured us that they would get with the senator and explain our needs and what we would like for him to do. Cochran is the ranking Republican on Appropriations so he can be a huge help in advancing the two Bills I mentioned in the previous post. To finish our visit to Capitol Hill, we met with the staff in Sen. Roger Wicker's office. They too promised to forward our information on to the senator and assured us that they would be in contact with us in the coming days to let us know the senator's thoughts on the information we dropped off.
Following our last meeting, Michelle and I walked the grounds of the U.S. Capitol and took several pictures. We also got some great shots of the Library of Congress and the US Supreme Court. We are having a great time here and feel like we are making a positive impact on the Ds community, at home and abroad. Tomorrow, we will start our workshops and training seminars before finishing up on Saturday. I will have a post tomorrow on how the workshops go.
Wednesday, February 25, 2009
Hello Everyone. It is 12:17 here and we have just wrapped up a very long and exhausting day. To start things off, we had a 50 minute delay in Tupelo this morning because of the weather. That made us late getting into Memphis so we also missed our connecting flight to DC. Instead, we had to fly into Detroit and from there - into Reagan National Airport in Washington, D.C. We arrived 4 hours later than we had originally expected.
There are more than 300 people representing 84 affiliates here at this conference. It was fun reconnecting with Jawanda Mast, the former E.D. of DSAM. She is actively involved with this conference as she and her family now live in the Kansas City area where Affiliates in Action is based.
So, other than traveling and meeting new friends, I am sure you want to hear what we did on behalf of our children. There was a training meeting this evening that helped prepare us for our visit to Capitol Hill. We will be getting up in 6 hours, walk 5 blocks, get on the Metro subway and travel over to the Hill. At 8:30 we will attend a breakfast reception in honor of the Down Syndrome Congressional Caucus. Our meetings with Senators Cochran and Wicker and US Rep Childers will follow the reception.
In these meetings, we will ask our leaders to do two things:
1. To improve the quality and availability of information about Down syndrome by signing the McMorris Rodgers letter to the House and Senate Labor-HHS-Education Appropriations Subcommittees in support of funding to implement the Kennedy-Brownback Act (Prenatally and Postnatally Diagnosed Conditions Awareness Act). This piece of legislation was approved unanimously in the previous Congress, but did not include funding. Well, as all of you know, without the necessary funding, the bill is only a shell and is useless. They are being asked to commit $5M per year for 5 years.
This Bill seeks to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options. It offers referrals to support services such as hotlines, web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The goal is to create a sensitive and coherent process for delivering information about the diagnosis across the variety of medical professionals and technicians, who often provide conflicting and inaccurate information.
2. To create financial savings accounts for individuals with Down syndrome. To do this, we will ask our leaders to co-sponsor the ABLE Act (Achieving a Better Life Experience Act). This Bill is actually scheduled to come to the floor for discussion and a possible vote while we are on Capitol Hill, so maybe the collective efforts of all the advocates from the AIA Conference will be effective in passing this piece of legislation on Thursday afternoon.
Basically, this Bill will allow our children to hold regular jobs and get paid a normal wage without any fear of losing their benefits through medicaid, etc. To be implemented effectively, this will require Congress to enact separate appropriations of $10M a year for the model demonstration projects for students with intellectual disabilities and $1.5M for the coordinating center.
Those are only the top 2 topics that we have decided to carry to our local lawmakers. Other subjects we discussed in the conference were: 1) Providing students with disabilities with a quality higher education; 2) Develop a National Down Syndrome Patient Registry; and 3) Expand Medicaid Home and Community Based Services.
I look forward to sharing with all of you about all of these subjects more in depth soon after we get back; but for now, I am calling it a night - uh morning - so that I can be effective in my efforts on Capitol Hill.
Side Note: I still have the flu bug, but not nearly as bad as it was. The meds are working.
There are more than 300 people representing 84 affiliates here at this conference. It was fun reconnecting with Jawanda Mast, the former E.D. of DSAM. She is actively involved with this conference as she and her family now live in the Kansas City area where Affiliates in Action is based.
So, other than traveling and meeting new friends, I am sure you want to hear what we did on behalf of our children. There was a training meeting this evening that helped prepare us for our visit to Capitol Hill. We will be getting up in 6 hours, walk 5 blocks, get on the Metro subway and travel over to the Hill. At 8:30 we will attend a breakfast reception in honor of the Down Syndrome Congressional Caucus. Our meetings with Senators Cochran and Wicker and US Rep Childers will follow the reception.
In these meetings, we will ask our leaders to do two things:
1. To improve the quality and availability of information about Down syndrome by signing the McMorris Rodgers letter to the House and Senate Labor-HHS-Education Appropriations Subcommittees in support of funding to implement the Kennedy-Brownback Act (Prenatally and Postnatally Diagnosed Conditions Awareness Act). This piece of legislation was approved unanimously in the previous Congress, but did not include funding. Well, as all of you know, without the necessary funding, the bill is only a shell and is useless. They are being asked to commit $5M per year for 5 years.
This Bill seeks to ensure that pregnant women receiving a positive prenatal test result and parents receiving a postnatal diagnosis will receive up-to-date, scientific information about life expectancy, clinical course, intellectual and functional development, and prenatal and postnatal treatment options. It offers referrals to support services such as hotlines, web sites, information clearinghouses, adoption registries, and parent support networks and programs specific to Down syndrome and other prenatally diagnosed conditions. The goal is to create a sensitive and coherent process for delivering information about the diagnosis across the variety of medical professionals and technicians, who often provide conflicting and inaccurate information.
2. To create financial savings accounts for individuals with Down syndrome. To do this, we will ask our leaders to co-sponsor the ABLE Act (Achieving a Better Life Experience Act). This Bill is actually scheduled to come to the floor for discussion and a possible vote while we are on Capitol Hill, so maybe the collective efforts of all the advocates from the AIA Conference will be effective in passing this piece of legislation on Thursday afternoon.
Basically, this Bill will allow our children to hold regular jobs and get paid a normal wage without any fear of losing their benefits through medicaid, etc. To be implemented effectively, this will require Congress to enact separate appropriations of $10M a year for the model demonstration projects for students with intellectual disabilities and $1.5M for the coordinating center.
Those are only the top 2 topics that we have decided to carry to our local lawmakers. Other subjects we discussed in the conference were: 1) Providing students with disabilities with a quality higher education; 2) Develop a National Down Syndrome Patient Registry; and 3) Expand Medicaid Home and Community Based Services.
I look forward to sharing with all of you about all of these subjects more in depth soon after we get back; but for now, I am calling it a night - uh morning - so that I can be effective in my efforts on Capitol Hill.
Side Note: I still have the flu bug, but not nearly as bad as it was. The meds are working.
Friday, February 20, 2009
Getting Ready For DC
Welcome to the new blog site for the Northeast Mississippi Down Syndrome Society. It is our prayer that through this blog site that many of you will learn more about Down syndrome and how you can help our organization raise awareness of Down syndrome in your communities. Our children are a gift from our Creator and we hope that you will be blessed by them as they continue to grow and become contributors in society.
Michelle and I are counting down the days for our very first Down syndrome conference, to be held in Washington DC on Wednesday through Saturday of next week. It is sposored by Affiliates in Action based out of Kansas City, KS. Here is our schedule for the coming days. On Wednesday morning at 6:51 a.m., we will board a flight to Washington from the Tupelo airport. We will arrive in Washington at 11:30. That afternoon, we will attend the opening ceremonies of the conference and sit through a meeting that will cover the work that the legistature is doing on behalf of the thousands of individuals who are living with Down syndrome. This meeting is to prepare us for our day on Capitol Hill the next day.
On Thursday, we will commute over to Capitol Hill for a day of meetings and fun. At 8:30, we will attend a legislative breakfast where we will meet various legislators in our nation's capitol. This breakfast reception is to honor the work they are doing for our cause. Beginning at 10 a.m., various meetings will begin around Capitol Hill to advocate for individuals living with Down syndrome. Michelle and I have meetings scheduled with U.S. Representative Travis Childers, U.S. Senator Roger Wicker and U.S. Senator Thad Cochran. We look forward to sitting down with them to discuss the needs and expectations we have as a Down syndrome community and how they can help us meet them.
Following the meetings at the Capitol building, we will return to our hotel, The Doubletree to mix and mingle with other conference attendees. There is a AIA Idol contest that night for attendees. There will be a karaoke contest with opportunities to win some very nice prizes. I can't gurantee that we will be participants in the contest, but we look forward to watching the others though as they sing their way into our hearts.
On Friday, there will be multiple worshops going on throughout the day covering numerour topics as they relate to Down syndrome. Michelle and I look forward to these workshops. They will cover topics such as education, sibling issues, support group issues like creating and maintaining an efficient board of directors, publicity, outreach, advocacy, fundraisers, etc. Other topics include workforce transitioning, Buddy Walk training, leadership training, healthcare, among others. These workshops will continue on Saturday morning. At noon on Saturday, we will attend the closing ceremonies of the 2009 AIA Conference.
Our flight leaves Washington at 3:30 on Saturday and we will head home. Following a 24 hour layover in Detroit, MI where we will get in a short visit with Michelle's grandparents, we will return to Tupelo Sunday night around 8:30 p.m. It is our intentions to carry the laptop and update this blog throughout the conference, so check back here to see what we are doing in DC. We would also encourage any questions or comments you may have for us too. Especially before the conference, we would like to know what issues you are most interested in so that we can try to get them covered at the conference. Until next Wednesday, thank you once again for getting involved in a great cause, that of raising awareness of Down syndrome in Northeast Mississippi.
Michelle and I are counting down the days for our very first Down syndrome conference, to be held in Washington DC on Wednesday through Saturday of next week. It is sposored by Affiliates in Action based out of Kansas City, KS. Here is our schedule for the coming days. On Wednesday morning at 6:51 a.m., we will board a flight to Washington from the Tupelo airport. We will arrive in Washington at 11:30. That afternoon, we will attend the opening ceremonies of the conference and sit through a meeting that will cover the work that the legistature is doing on behalf of the thousands of individuals who are living with Down syndrome. This meeting is to prepare us for our day on Capitol Hill the next day.
On Thursday, we will commute over to Capitol Hill for a day of meetings and fun. At 8:30, we will attend a legislative breakfast where we will meet various legislators in our nation's capitol. This breakfast reception is to honor the work they are doing for our cause. Beginning at 10 a.m., various meetings will begin around Capitol Hill to advocate for individuals living with Down syndrome. Michelle and I have meetings scheduled with U.S. Representative Travis Childers, U.S. Senator Roger Wicker and U.S. Senator Thad Cochran. We look forward to sitting down with them to discuss the needs and expectations we have as a Down syndrome community and how they can help us meet them.
Following the meetings at the Capitol building, we will return to our hotel, The Doubletree to mix and mingle with other conference attendees. There is a AIA Idol contest that night for attendees. There will be a karaoke contest with opportunities to win some very nice prizes. I can't gurantee that we will be participants in the contest, but we look forward to watching the others though as they sing their way into our hearts.
On Friday, there will be multiple worshops going on throughout the day covering numerour topics as they relate to Down syndrome. Michelle and I look forward to these workshops. They will cover topics such as education, sibling issues, support group issues like creating and maintaining an efficient board of directors, publicity, outreach, advocacy, fundraisers, etc. Other topics include workforce transitioning, Buddy Walk training, leadership training, healthcare, among others. These workshops will continue on Saturday morning. At noon on Saturday, we will attend the closing ceremonies of the 2009 AIA Conference.
Our flight leaves Washington at 3:30 on Saturday and we will head home. Following a 24 hour layover in Detroit, MI where we will get in a short visit with Michelle's grandparents, we will return to Tupelo Sunday night around 8:30 p.m. It is our intentions to carry the laptop and update this blog throughout the conference, so check back here to see what we are doing in DC. We would also encourage any questions or comments you may have for us too. Especially before the conference, we would like to know what issues you are most interested in so that we can try to get them covered at the conference. Until next Wednesday, thank you once again for getting involved in a great cause, that of raising awareness of Down syndrome in Northeast Mississippi.
Thursday, February 19, 2009
Affiliates In Action Conference
Executive Director, Scott Knight, and Michelle Knight are representing NEMDSS at the Down Syndrome Affiliates In Action Conference in Washington, D.C. They will be blogging highlights and information during the conference. Please feel free to read, respond and ask questions. Thank you. NEMDSS
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