Studies, Foundations, Advocacy and breakthroughs

Down Home Ranch is a community of opportunity for our Ranchers and their families. But we can’t do it alone. There are times when we need answers and resources to help us find our way. This page will help to serve that need.

There are innumerable IDD Resources regarding intellectual and developmental disabilities, many of which we will include on this website.

We include links here to some of the most cutting-edge research in IDD, organizations that create new opportunities for people with disabilities and their families and resources for parents and caregivers. Please help us develop this list. If you know of an organization or have some information that should be included here, please email us at [email protected] and let us know. We want to continue to provide our friends, our families and our Ranchers with every opportunity. Thank you.

Saving Those We Love: A Message of Utmost Urgency

resources-pierce
Dr. Jon Pierce-Shimomura, Associate Professor of Neuroscience, University of Texas
The clock is ticking for our Ranchers with Down syndrome. Right now they are young adults, but all will probably develop Alzheimer’s in their lives if they live past early middle age. Dr. Jon Pierce-Shimomura, Associate Professor of Neuroscience at the University of Texas-Austin, is the father of a son with Down syndrome. Jon is performing cutting-edge research on the functional implications of the extra 21st chromosome that causes Down syndrome. This research will lead to interventions to overcome the limitations of Down syndrome and block the development of Alzheimer’s in people with (and without) the condition. Jon’s work is fascinating and holds great hope for the future of those we love, but its continuance depends on Jon’s ability to secure funding for it. Those of us who love people with Down syndrome owe it to them to help out in any way we can—through direct contributions, securing help from others, and lobbying for more research dollars to go to Down syndrome, which is sadly underfunded relative to other disabilities. Please email us today at [email protected] and join with us in support of the “Down Syndrome Research Project.”

Research and University Programs

ID Resource scientific experts
Doctors Mike Harpold, Jerry Horton and William Mobley at the Los Angeles Down Syndrome Society Gathering at the Hollywood Bowl.

 

Down Syndrome Organizations in Texas

Families Speaking Up: http://www.familiesspeakingup.com/

Down Syndrome Education International:    International Site    USA Conferences

DSResearch, Inc. (Down Syndrome Research Online Advocacy Group)
Down Syndrome On-Line

Down Syndrome Research Foundation (Canada)
Down Syndrome Research Foundation (United Kingdom)
Down Syndrome Research Center – Stanford University School of Medicine

Down Syndrome Research and Treatment Foundation
Linda Crnic Institute, University of Colorado
Supported by Global Down Syndrome Foundation

Jérôme Lejeune Foundation implements and supports research programs designed to develop treatments for Down syndrome (trisomy 21) and other intellectual disabilities of genetic origin.

The Foundation’s Mission:  Harnessing the expertise and experience of each of the institutions that have gradually arisen and grown up around it, the Jérôme Lejeune Foundation today provides a platform of excellence supporting the key players in the optimised pursuance of its objectives: conducting research to eventually find a treatment for genetic intelligence disorders, caring for and supporting the patients afflicted by these illnesses, defending them by providing information, and awareness arousal, and, if necessary, by appealing to public opinion and the government.   (For a more personal connection, read Judy’s blog post about the time she met Jérôme Lejeune.)

Health & Wellness

Professional Journals and Articles

Wehmeyer, Michael L. and James R. Patton, editors (2002) Pro-Ed (Austin, TX), Social Constructions of Mental Retardation: Impersonal Histories and the Hope for Personal Futures. Mental Retardation in the 21st Century, pages 379-393.

Horton, Jerry, Ph.D., and Judy, Brain Injury Professional, vol. 12, issue 1, 2015, Reflections on the Lives of Persons with Cognitive Disabilities in an Era of Declining Resources and Rising Expectations

 Wolfensberger, W. (2010). How to Comport Ourselves in an Era of Shrinking Resources. Intellectual and Developmental Disabilities: A Journal of Policy, Practices, and Perspectives, Vol. 48, No. 2, pages 147-162.

NPR, September 23, 2008: Fragile X – Drugs Hint At Potential Reversal Of Autism

Books

Etmanski, Al. (2004) Planned Lifetime Advocacy Network, Vancouver, BC, Canada,  A Good Life for You and Your Relative with a Disability.

Chicoine, Brian, MD and Dennis McGuire, Ph.D. (2010), Woodbine House (Bethesda, MD), The Guide to Good Health for Teens & Adults with Down Syndrome.

Evans, Darryl, The Lives of Mentally Retarded People

McGuire, Dennis, Ph.D. and Brian Chicoine, MD (2006), Woodbine House (Bethesda, MD), Mental Wellness in Adults with Down Syndrome: A Guide to Emotional and Behavioral Strengths and Challenges.

Medlen, Joan E. Buthrie, R.D, L.D. (2002) , Woodbine House (Bethesda, MD), The Down Syndrome Nutrition Handbook: A Guide to Promoting Healthy Lifestyles

Check out Woodbine Press, which specializes in special education and special needs topics.

Future Planning

These resources will help you start thinking about how to plan for the future of your child with special needs.

PLAN: Planned Lifetime Advocacy Network works with families to create a good life for people with disabilities, through a a network of caring relationships, a sound financial plan, supported decision-making, and a place to call home. Also see their sister organization, Plan Institute for Caring Citizenship which provides training, consultation and research related to leadership development, personal network facilitation, and caring citizenship.
Making Sure the Kids Are All Right , The Wall Street Journal, March 14, 2011, page R7
“For parents of children with special needs, financial planning can be especially complicated—and especially important.”WrightsLaw: Special Needs: Planning for the Future: Information and Articles About Future Planning and Special Needs Trusts.

 Post-Secondary Education Programs: Colleges and Vocational

Consortium for Post-Secondary Education for Individuals with Developmental Disabilities

Service Organizations

 

Leisure Time: Sports, Travel, and Other Recreation

Government Agencies

Texas Department of Aging and Disabilities (DADS)

Support groups and advocacy

These organizations offer publications, education, conferences, networking forums, and advocacy for individuals with intellectual and developmental disabilities and their parents, families, and extended circle of care-givers.