Tag Archives: planning

The Caregiver’s Notebook – A Review and Giveaway

The Caregiver's Notebook on The Road We've SharedThis year, we’ve been talking a lot about the joys and responsibilities of caregiving for adults who have Down syndrome.  We all need a little help every now and then, and I’ve been extremely grateful for the way people have come together on The Road to support each other.  One thing I’ve become aware of from talking to others is my own need to put more of our daily routine and important information in writing.

If something were to happen to me, would others be able to continue my son’s care with minimal disruption for him?  

We all know how important predictability can be for those we love.  But how do we get started?  I’ve recently been given the opportunity to review a new tool called “The Caregiver’s Notebook – An Organizational Tool and Support to Help You Care for Others” by Jolene Philo.  If you’re anything like me, (and a daunting task leads to procrastination) you’ll love this!  I’ve put this book at the top of my New Year’s resolution list of “to-do’s.”

One of the great things about this book is that it’s divided into sections, each with instructions and inspirational stories that get you motivated. It lets you choose what part to tackle first.  For us, Josh’s medicines and recent lab results are important right now.  The sections for “Medications” and “Medical Information” will have top priority.

Continue reading The Caregiver’s Notebook – A Review and Giveaway

Issue Monday – Aging with Down Syndrome

By Stephanie Holland *Revised 10/13/15

One of the reasons we decided to create a separate community was our realization that parents and caregivers of adults have specific needs for information.  We’re past the stage of schools and education.  We’re lucky to be living in a time when the life expectancy of people who have Down syndrome has doubled since our children were born.  While this is wonderful news, it also presents unique needs for information and care giving.  The problem is that some of this information is not readily available, and some may not even be written yet.

We need to create some of this knowledge by sharing our experiences with each other and learning as we go.


Aging with Down syndrome on The Road We've Shared

Photo credit: Down syndrome New South Wales

One of the first issues we tackled here on The Road was that of legal guardianship of adults who have an intellectual disability.  In the past, it was assumed that all parents would petition the courts and receive guardianship of their children once they reached 18.  There are many reasons this was the norm, and it was thought that it was the only way to keep our loved once safe from being taken advantage of.  Today, the laws are changing and different options that allow parents specific control over things like medical decision making and finances can be pursued without taking away all of an individual’s civil rights.  Each family needs to make their own decision as to which avenue to take.  We at The Road are always looking for information that we can share and ways we can discuss the pro’s and con’s together. A webinar about guardianship and options to it is in the works so stay tuned.

Some of our posts on the issue include:
Becoming an adult in the eyes of the law ~~~ By Karen Gregoire- 1/4/14
The joys of guardianship paperwork – By Mardra Sikora – 1/15/14
Oncoming traffic – By Mardra Sikora – 1/23/14
And the archived version of our very first “radio show” that was a two-hour conversation on guardianship.

You can find several resources on the subject of planning, including our list of Guardianship Information By State, and some “Special Needs Planning Resources” on our “Resources” page.

Life Expectancy for people with Down syndrome has increased dramatically in recent decades

 * While these statistics are encouraging, we have since discovered that they only apply to Caucasians. For people of color, the increase is not as dramatic and the life expectancy is about 1/2 of what is being reported.
Racial disparities in Down syndrome

For more information on racial disparities in the Down syndrome community, see our posts on that topic.

Medical Issues

People who have Down syndrome have many of the same health issues as the rest of us.  The aging process can start earlier and progress more rapidly though.

We’ve collected a list of adult Down syndrome medical clinics and follow all of the news on the link between Alzheimer’s and Ds.

In November, we’ll be focusing on health concerns for aging adults.

Until then, you may want to check out the NDSS page on “Aging Matters” here.

Creating History

As a community, we can reach out and share our stories, helping caregivers deal with current events in our lives and creating resources for future generations.  We’re in a unique place and our voices can help others.  We hope you’ll join us and feel free to let us know how we can help you and your family navigate the glorious stage of adulthood.

Letter of Intent

Legal issues on The Road We've Shared
Since this month’s topic is legal issues, I wanted to start looking at what I’ve heard experts say is the most important “first step” in planning for the future – the Letter of Intent (LOI).

From what I’ve read (I’m no lawyer) the LOI is NOT a legally binding document, but it is a way for parents to let their wishes be known.  It’s also a tool to help other caregivers understand your loved one’s habits and routines.

It’s important to create – and update.

Continue reading Letter of Intent