Institute for Disability Studies
Family Health Notes
November 7, 2012
Inside this issue:
1) National Institutes of Health Establishes Down Syndrome Patient Registry
2) Disability.gov Launches “What’s Your Connection?” Campaign
3) MSPTI Webinar – Bridge to Independence – Nov. 9, 10 a.m.
4) MSPTI Webinar - Journey to Independence: Understanding Transition – Dec. 12, 10 a.m.
5) New iPad Videos Added to Results Matter Video Library
6) Are You an Arc Angel?
1) National Institutes of Health Establishes Down Syndrome Patient Registry
A new Down syndrome patient registry will facilitate contacts and information sharing among families, patients, researchers and parent groups. The National Institutes of Health (NIH) has awarded a contract to PatientCrossroads to operate the registry. The company has created patient-centric registries for muscular dystrophy and many rare disorders. For more information, visit http://www.nih.gov/news/health/oct2012/nichd-26.htm.
2) Disability.gov Launches “What’s Your Connection?” Campaign
The Disability.gov website has launched "What's Your Connection?" to commemorate the site's 10th anniversary. The initiative emphasizes that disability is a natural part of the human experience and focuses on the integral role people with disabilities play in American society. Disability.gov is managed by the U.S. Department of Labor's Office of Disability Employment Policy in collaboration with 21 federal agency partners. People nationwide can participate in the campaign by submitting a captioned photograph or video that answers the question "What's your connection to disability?" Submissions will be accepted through July 31, 2013. More information, including rules and requirements, is available at https://www.disability.gov/home/newsroom/what's_your_connection.
For the news release, visit http://www.dol.gov/opa/media/press/odep/ODEP20122184.htm#.UJQH9m_A8sd.
3) MSPTI Webinar – Bridge to Independence – Nov. 9, 10 a.m.
Learn more about Bridge to Independence, Mississippi's Money Follows the Person (MFP) initiative. MFP is a federal demonstration grant to enhance community-living options for individuals with disabilities and to help states rebalance their long-term care systems. People with disabilities often turn to nursing homes or other residential care facilities when they cannot access the support services they need to live in the community. Tamatha Byars, operations analyst for Bridge to Independence, will make this hour-long MSPTI presentation on Fri., Nov. 9 at 10 a.m. To register, go to https://www2.gotomeeting.com/register/333827490.
4) MSPTI Webinar - Journey to Independence: Understanding Transition – Dec. 12, 10 a.m.
The MSPTI webinar Journey to Independence: Understanding Transition and Self-Advocacy will be presented by Cindy Singletary, independent living specialist for LIFE of MS from the Gulf Coast on Wed., Dec. 12, at 10 a.m. Cindy will lead attendees through the common transitions of youth with disabilities and discuss preparing and possible resources for the different stages. To register, go to https://www2.gotomeeting.com/register/275525778.
5) New iPad Videos Added to Results Matter Video Library
Results Matter, a program of the Colorado Department of Education, has posted the following two new videos to the iPads in Early Childhood section of the Results Matter Video Library. They are Using iPads to Enhance Preschool Speech and Language Services, and Ricky, Lilly, and Emiliano Play with an iPad. These clips are available for viewing and may be downloaded at no cost for use in educational and professional development activities. For more information, visit http://www.cde.state.co.us/resultsmatter/RMVideoSeries_iPadsInEarlyChildhood.htm#top.
6) Are You an Arc Angel?
Be an Arc angel. Earn you wings this year by making the season special for someone with an intellectual or related developmental disability. An Arc angel is an individual, business, civic organization, or church group who anonymously provide holiday cheer to an individual with an intellectual or related developmental disability. Often at this time of year, people think of children, but there are so many adults living in community settings who have no family or limited resources. The Arc of Mississippi is collecting names from service providers of individuals who might otherwise not receive any holiday presents. Arc angels are provided with the name(s), gift ideas and sizes of people living in group homes and other community settings. Angels are asked to spend at least $25, purchase and wrap the presents and bring them to The Arc office by Dec. 3. For more information or to receive a gift recipient’s name and gift suggestions, please call The Arc office in Jackson at 601.982.1180 or 1.800.717.1180. Names will be available Nov. 1.
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~~~~~~~~~~~~~~~~~~Family Health Notes~~~~~~~~~~~~~~~~~~
Family Health Notes is sponsored by the Institute for Disability Studies (IDS), Mississippi’s University Center for Excellence in Developmental Disabilities (UCEDD) at The University of Southern Mississippi. IDS provides university training, community service activities, research and information that promote the independence, productivity, and community inclusion of individuals with disabilities and their families. For more information about IDS, visit www.usm/edu/ids or call 1.888.671.0051 (TTY). To make a tax-deductible gift to IDS, visit www.usm.edu/ids/supportus.html.
The Family-to-Family Health Information and Education Center (F2F) is a family-focused, family managed resource center that empowers families of Mississippi children with special health care needs to be partners in the decisions made concerning the health of their children. F2F is funded by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (GR#H84MC07948).
The Mississippi Integrated Community Systems (MICS) for Children and Youth with Special Health Care Needs project is working to create a seamless system of family-centered, community-based, culturally competent services and supports for children and youth with special health care needs (CYSHCN). MICS is funded by the Maternal and Child Bureau of the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (GR#D70MC12841).
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