http://www.mrrcmedia.org/bb Parent to parent support forum for general topics. en Wed, 08 Sep 2010 10:19:07 GMT vBulletin 60 http://www.mrrcmedia.org/bb/images/misc/rss.jpg http://www.mrrcmedia.org/bb Tue, 12 Dec 2006 21:09:03 GMT From the National Coalition on Deafblindness: December 12, 2006 Dear Coalition Members, A lot has happened since our last communication. Although... From the National Coalition on Deafblindness:

December 12, 2006

Dear Coalition Members,

A lot has happened since our last communication. Although we did not get our budget request included in the FY 07 congressional budgets, we did begin to develop a network. Many of you contacted your representatives and have started to form a relationship with them. We can build upon that. We have new leadership in Congress and the 2008 budget cycle is upon us. This year we are starting earlier and working harder to get the request for increased funding for deafblind services included in both the House and Senate Appropriation bills for the FY 08 budget. That means that we need your help now.

We have two immediate goals. First, we want each of you to contact your representatives by phone or email and ask them to include the funding request in their short list of requests to the Appropriation Committee. Each congressperson and senator can identify three funding priorities for each budget cycle. We need to get several members of each chamber to include increased funding for deafblind services on their priority list.

Next, we need you to meet with your representatives or their staff to talk about why deafblind funding is so important. You can meet with your representatives or their staff in their home districts. If you are able to come to Washington, DC and would like to have a coalition person join you in a meeting, we plan to schedule meetings during the last week of January and the first week of February.

Please keep us in the loop. Send us copies of any letters you write or email us with updates about phone contacts. If you have a meeting in your district, tell us the name of the person with whom you met. We will follow up. If we all work together we can have a much greater impact.

Your congressperson and senators will submit their requests in February. They need to hear from you now.

The Coalition is trying to increase the amount of federal monies allocated to services for children who are deafblind. Specifically, we are seeking an additional $2 million dollars for the Department of Education's Office of Special Education and Rehabilitative Services (OSERS) to address the resource needs of children who are deafblind and their families. Federal monies support both state and national technical assistance programs that provide crucial support to children, their families and their educational staff.

The additional $2 million dollars will provide approximately:

$1.4 million to the state technical assistance projects
$350,000 to support the family-focused activities of the National Consortium on Deaf-Blindness (NCDB)
$250,000 to strengthen personnel preparation programs

Click here for a sample letter If you have any questions or need more information, please call or email. (617) 972-7768 or betsy.mcginnity@perkins.org

Please contact your representatives today, by phone or email. For contact information for your congressperson and senators, go to our website. http://dbcoalition.org/help.htm

Sincerely,

Betsy L. McGinnity

Campaign Coordinator

National Coalition on Deafblindness

betsy.mcginnity@perkins.org

(617) 972-7768 ]]> General Parent to Parent Support Dennis Gotto http://www.mrrcmedia.org/bb/showthread.php?t=38 Thu, 22 Jun 2006 19:45:10 GMT Hello Everyone! My name is Julie Bowman, and I am the mother of a child with visual impairments. First of all, I want to welcome you to the boards.... Hello Everyone! My name is Julie Bowman, and I am the mother of a child with visual impairments. First of all, I want to welcome you to the boards. I hope that others will join this thread and we can get to know each other. I also hope that I can offer information, advice, or just a shoulder to lean on.

My daughter Mary was diagnosed with visual impairment at 4 months of age. She has suspected ocular albinism as well as cortical visual impairment. For those not familiar with these conditions, the functional result is that Mary's vision is reduced and she also has trouble visually attending (she looks away, rather than at, objects). Mary also has other disabilities, resulting in delays in all areas (gross motor, fine motor, speech -- the whole package!).

Needless to say, I have been through many phases of adjustment (especially since Mary's diagnoses have evolved and changed over her life). I went from shock and disbelief to wanting to "attack" the problem and learn everything I could about visual impairments to meeting other families and getting support and finally to where I am now – enjoying my daughter and living a fairly “normal life.”

Mary is now 2&1/2 and a joy to be around. She has made so much progress in these past 2 years, I can hardly believe it. That doesn't mean that she doesn't still have big challenges ahead, but I know she (and I) will handle them just like we have handled everything else -- one step at a time.


I think the key to our success is connecting with other families. I was fortunate to be able to join a Mothers’ group of absolutely fantastic moms. Besides being great role models, they shared information regarding therapies, support groups, educational options, medical issues, and so much more. For those who don't have a group, we have the wonderful resource of the internet to connect us, and so here we are on these boards. I hope that others will share their stories -- there are many of us going through the same things, and by letting each other know that we are out there, no one feels alone:) ]]> General Parent to Parent Support JBowman http://www.mrrcmedia.org/bb/showthread.php?t=36